Chadwick Boseman was a black actor who lived in America, after graduating from university, he began his acting career in theatre before transitioning to the big screen where he portrayed many memorable roles throughout the years as well as winning multiple awards for his various movies and characters he played.
Sadly, in August 2020, the world was shocked with the news that Chadwick Boseman sadly passed away in his sleep at home after a long and private 4-year battle with colon cancer. Even after his passing, Chadwick is still being remembered for the impact that he made on people and the films that he was in.
What did he do?
Chadwick in his many inspirational roles as Jackie Robinson (left) T’Challa/Black Panther (Middle) James Brown (RIght) and Thurgood Marshell (Right)
His first major role was as a series regular on Persons Unknown before landing his breakthrough performance as baseball player Jackie Robinson in 42. He continued to portray historical figures in other biographical movies such as singer James Brown in Get on Up and Thurgood Marshall in Marshall.
When Chadwick was diagnosed with cancer in 2016, he continued acting while keeping his illness a secret, the movies and TV show that he had a leading role in that was released after his passing paid tribute to him at the end of the credits. He also received an Academy Award nomination and a Golden Globe Award for Best Actor for the last movie he was in.
His time in Marvel as Black Panther
Chadwick as T’Challa in Black Panther (2018)
One of his most notable and rememberable roles in his career was in the Marvel Cinematic Universe where he played T’Challa AKA Black Panther from 2016 – 2021. He has appeared in four Marvel movies including his own standalone movie and appearing in the Disney Plus series “What if” where he voiced an alternate version of T’Challa one year after his passing.
His standalone MCU movie Black Panther was worldly praised for being the first Marvel movie to have an entire black cast and director as well as Chadwick’s impactful portrayal as T’Challa which ended up with Black Panther becoming one of the best films in the Marvel Cinematic Universe and being nominated for an Academy Award for Best Picture.
How he was remembered after his passing
A portrait of Chadwick that was released after his passing
His fans, family, friends and all his cast mates paid tribute to him. A show was made about his life and work called Chadwick Boseman: A Tribute for a King, he was honored with a moment of silence in the fifth game between the Los Angeles Lakers and the Portland Trail Blazers and Lewis Hamilton dedicated his win in the 2020 Belgian Grand Prix to Chadwick
His death also caused a massive shift in Marvel as he was going to star in the next Black Panther movie, however, Marvel decided to not recast the role as he had a major impact on the world as the character. Next month, Marvel is releasing Black Panther: Wakanda Forever which will serve as a tribute to Chadwick as well as developing the world of Wakanda.
How he had impacted the world and the Black Community
Chadwick with one of his many awards
Chadwick supported various charities such as cancer charities and advocated for children’s charities with the Jackie Robinson Foundation. In April 2020, he donated $4.2 million in personal protective equipment to hospitals fighting COVID-19 in black communities. His old university renamed its College of Fine Arts in honour of his inspirational legacy.
After his performance in Black Panther, Chadwick earned a spot on the 2018 Time 100 as one of the world’s most influential people. Many people praised him for how he became a culture hero for people in the African American and black communities and for how Black Panther raised the bar for racial equality and representation on screen.
Overall, Chadwick Boseman’s career will always be seen as an amazing legacy that changed the film industry for the better and will be remembered for generations to come for his flawless and inspirational acting in all the films and shows he was in as well how he brought back the attention of black history to the world.
ATLAS aims to bring about positive change for people with additional needs and disabilities. A priority for us as ATLAS members is to actively tackle ableism, stigma, and discrimination in the work that they do. An essential part of this includes raising awareness around the power of language, especially the language used to define disability.
When talking about language, it is important to understand the power of language itself. How language shapes society, culture, the way we see groups of people and even how we see ourselves.
Language can, and does, shape and influence our reality. In this report, we focus on how language can spread ableism, stigma and discrimination.
Aiming to increase the use of language that people with additional needs and disabilities use to self-describe and identify in personal and professional settings.
How this chapter works
We felt that presenting just a list of words would not be enough to help professionals, services and the public understand the importance of language in their everyday lives.
Guide to the rating system
When we were discussing in group sessions how to indicate whether words should not be used, should be used with caution or are okay to use, we initially discussed using a traffic light system. However, it was found that some words can be more (or less) appropriate in different situations.
Therefore, in this report we categorise words using an adapted RAG (Red, Amber, Green) rating system: red words, red-orange words, orange words, orange-green words, or green words. ATLAS recommendations for each of these categories are listed in Table 1.
“The point of orange is that if the disabled person uses it themselves, that’s one thing, but if you use if for them it’s not ok. Ask first”
-ATLAS member
Please remember that this guide should not be used to overwrite the lived experiences of others. We would always encourage professionals to communicate with the people they work with and use the language that they self-identify and describe themselves with, even if that differs from the language suggestions we provided here. If in doubt, ask.
Category
ATLAS Recommendation
Red
We recommend that red words are not used because they are harmful and may be offensive. We believe these words spread ableism, stigma, and discrimination
Red-Orange
We recommend that red-orange words are not used to talk about all young people with additional needs and disabilities. However, some individuals may prefer this language, or the word may be deeply entrenched into a system that will need time to adapt its language.
Orange
We recommend that orange words are not used without the permission of the young person(s) with additional needs and disabilities that you are talking to or about.
Orange-Green
We recommend that you are careful when using these words as whether or not they are appropriate to used may vary depending on the person or group you are talking or referring to. A majority of people may have no problem with these words, however there will be people who prefer to self-describe differently.
Green
We would like to encourage you to use green words. These words are used by us ATLAS members to self describe and identify.
Table 1- ATLAS language recommendations for each word category.
Preferred Terminology Examples
1. Use the term Additional Needs and Disabilities instead of Special Educational Needs and Disabilities (SEND)
“We don’t like to be called special.”
-ATLAS Member
“[Special] is a euphemism. The way that it works with euphemisms is that they’ll put a euphemism on a term that is regarded badly by society. But unless you change the underlying attitude then the new word will just become a bad word in itself.”
-ATLAS Member
During ATLAS sessions we discussed how people wouldn’t be able to immediately stop using some of the acronyms with the word “special” because the term “special” is used nationally for young people with additional needs and disabilities. This includes the acronyms SEND (Special Educational Needs and Disabilities), SEN (Special Educational Needs) and SENCo (Special Educational Needs Co-ordinator).
Therefore, we have allocated a red-orange rating: it is ok to use for now, however we would like to encourage professionals to start moving away from terms that contain the euphemism ‘special’.
SEND, SEN, and SENCo are red-orange terms.
Not only do these acronyms include the word special, but they also relate someone’s needs directly to an educational setting. We want these terms changed to remove the ‘educational’ component from the descriptor.
“It is not just in school but out in society.”
-ATLAS Member
Additional needs and disabilities is a green term.
Instead, we would like the term additional needs and disabilities to be used. We also recommend asking the young people that you work with what words they would like to replace these terms.
2. Use the term Specialist Schools instead of Special Schools.
“I tend to use the term specialist when talking about schools instead of special. They are targeted for a specific thing, so they are specialist, not special.”
-ATLAS Member
The term special school is used to describe a school that is for children or young people with additional needs and disabilities.
Special school(s) is a red term.
Specialist school(S) is a green term.
3. Do not use descriptive terms like high or low functioning.
Descriptive terms are words or phrases that are used to further define a diagnosis. During ATLAS we raised that these words are often used to place people with additional needs and disabilities onto a linear scale.
“No-one is in a box, no-one is linear.”
-ATLAS Member
There are two examples in particular that ATLAS recommends people stop using and that is high and low functioning or cognitive functioning.
The terms high or low functioning are rated as red.
“People find high functioning and low functioning very offensive.”
-ATLAS Member
The term low cognitive functioning is rated as red.
“I would say I would be called low functioning. It separates disabled people. I’d say it would make people feel different and not in a good way. You’re making another minority.”
-ATLAS Member
Disability is fluid and therefore viewing the needs of disabled people in a linear way does not reflect reality. Having such a restrictive label attached to us can be very limiting in the way we are then treated. As disabled people we can have different abilities to cope at different times, however we can end up being defined by how we were able to cope in a specific moment and/or environment during an assessment. This means that the assessment results may not be applicable to our lived experience as a whole and is not always reflective of how we may respond in a different situation.
“They always think I’m needy or that I don’t need any adaptions, when I’m in the middle and have a spiky profile.”
-ATLAS Member
“A spiky profile is so so so common in neurodivergency as well. That being, having different levels of support needs in different areas.”
-ATLAS Member
“Everyone around me assumes that I am not able to do things. Whereas I can’t do some things some days, but I can other days. Phone calls are difficult for me because I am a selective mute. In person I can write a note.”
-ATLAS Member
“Some people at my Uni use high or low support needs instead.”
-ATLAS Member
4. Use the word Disability.
Disability is a word that is widely accepted by the disabled community as the word that the community identifies with and wishes to be used to describe them. In ATLAS we identified the following reasons why young people might not use the word disability to self-describe and identify:
Due to ableism, stigma and discrimination, some of us felt differently about the word disability.
In ATLAS we also recognised that until society is more inclusive, the needs of disabled people will be seen as additional to the ‘norm’. Therefore, ATLAS felt that at this point in time, they could not categorise the word disability as a green word.
Disability is a green-orange word.
When professionals are working directly with young people with additional needs and disabilities, ATLAS would like them to ask those young people how they self-describe and identify, then use that language.
Importantly, when you are talking about or to the community as a whole or are referring to additional needs and disabilities in general, you must include the word disability, so that you are not excluding people or promoting stigma and discrimination through omission.
“Some people have reclaimed ‘disabled’ – some people have reclaimed, some not.”
-ATLAS Member
“Everyone identifies with Disability differently. Some Deaf and Blind people don’t consider themselves disabled. But for me I am chronically ill, so it doesn’t matter where you put me, I’m still in pain all the time.”
-ATLAS Member
Remember,
“Disability is not a bad word.”
-ATLAS Member
ATLAS would like to see a future where people are not uncomfortable or afraid to identify as disabled.
I often feel that once you have the diagnosis you aren’t helped to discover what things are related to autism or not, which makes it hard to accept or understand yourself.
Watching Paige’s videos has allowed me to go “oh, maybe that’s why I do this” and “its not just me” which goes a long way in actually understanding your feelings and feeling more at peace.
Paige has autism and anxiety and spreads awareness on social media. She does a lot of stuff about autism in girls. Which I found is something that I’ve struggled a bit with because sometimes I don’t feel like I fit in. I haven’t really told anyone, but I worry that people won’t believe me saying that I have autism because I don’t feel that I fit in some of the stereotypes of autism and everything that I’ve read and seen online.
I haven’t seen anything that really reflects what it’s like for me. I don’t know just feel a bit less alone with Paige’s content, just from seeing that other people may be struggling with the same kind of things.
I think that having some influencers with different diagnosis’ that young people can relate to is so important and would really help a lot of people.
Below I have listed some of Paige’s content that helped me.
Autism traits in girls
Paige Layle YouTube video on 10 Autism Traits in Girls (:
You probably know a bit about what autism means, but here’s a quick recap.
Autistic people all struggle with communication, socialising, and flexible thinking. Many of us also have problems with sensory processing, self-regulation, and “meltdowns” or other catastrophic reactions.
It’s a “spectrum” condition, which means that different people are affected differently. Some of us can live fairly independently, and others can’t. Some can drive but not catch the bus, others can catch the bus but not drive. A popular phrase is “if you’ve met one autistic person, you’ve met one autistic person”. Very few things apply to all of us.
It’s a lifelong condition and in most cases, we don’t know what causes it. It’s likely to be partly, but not completely, genetics.
There are around 700,000 autistic people in the UK and about 12,000 in Surrey.
Here’s my attempt at an autism acceptance month blog post. It’s in the second person because that’s the easiest way for me to write, and it’s not perfect because I’ve learned that it’s much cooler to do things imperfectly than to not do them at all.
April was Autism Acceptance Month.
You used to think that if you ever wanted to not be autistic anymore, you’d just not tell people. You didn’t have to be autistic if you didn’t want to be.
You’ve now come to the conclusion that’s not how it works. Your common sense and life skills are slowly improving as you work on them, but you’ll always be obviously different.
And you need to accept that so that you can learn ways to cope and to change the world around you to be more okay. So you can live.
It goes something like this:
You have to go upstairs.
To begin with, in the back corner of the library, you need to type a number into a keypad next to a door, then push the door open and step inside.
First, you notice the warm wind hitting your face. Then it’s the overpowering smells. Next is the clutter and the obstacles, followed by the buzzing and echoing and kitchen and machinery noises. The harsh lighting isn’t helping.
You now need to make it through the corridor and type a different number into a keypad on the other side.
You can’t shut your eyes because the obstacles change multiple times a day. You can’t put your hands over your ears because you need to type in the number. You also can’t go back if you panic too much because the first door locks behind you and requires a code again. The only thing you can do to make it better is to hold your breath.
If you make it through the second door, you’ll notice the loudest, most painful and overpowering buzzing noise in the building. If you’re lucky, the smell won’t have travelled too much into here – either way, you have to breathe now. The lights are distracting and bright and different. One of the circular lights on the wall, about halfway up the stairs, is where the buzzing noise is coming from – it’s easy to spot because it’s a different colour from the rest. The square lights are mesmerising and unreachable.
The next problem is of course the stairs. There’s nothing between you and the ground except a small railing, and it’s terrifying and dizzying and you’re terrified you’ll die. You also have to walk right next to the loud light, and almost within touching distance of the square lights.
I usually just get the lift, even though it’s much slower.
But if you’ve made it up the stairs, you’ve made it through the worst. There’s still another keypad and some automatic lights to contend with, but that’s nothing compared to everything else.
Hot chocolate is upstairs, and so is Solar your weighted sloth. Your best work friend is probably hotdesking in the office, and you can see the town square from the windows. Upstairs will be okay.
Or this:
It’s 9:00. You’ve turned on the lights and computers on your way in, and you’re drinking your hot chocolate and playing Animal Crossing. The library doesn’t open for another half an hour, but you’re in a shared building and plenty is going on already.
It’s 09:20. Your colleague’s not here yet. No biggie: they don’t start for another 10 minutes. They’re probably fine. Normal people aren’t an hour early to work. And you don’t start until 10, so really it’s not your business. You might put the money in the tills and do a quick walk-round check to make things easier for them.
It’s 09:25. They’re not here yet. This is normal and okay. You move your things to be not visible from the public area and go sit in the office and stay calm because they’ll be here.
It’s 09:27. They’re not here, which is fine because they still have 3 minutes, and you’re not going to panic.
It’s 09:28. You check the timetable to make sure it’s the right day and the right branch and the right staff and the right time. It is. Of course it is. It’s fine.
It’s 09:29. You will not cry. Everything will be fine. They’ll be here. You’ve pretty much forgotten Animal Crossing at this point in favour of calm grounding exercises. Your eyes are stinging with the tears you said you wouldn’t cry.
It’s 09:29:30. What if they’re dead? But you can’t think that! Because they’re probably fine! They’re always fine! Everything is fine! Normal people don’t panic! You’re not panicking!
It‘s 09:29:45. The library opens in 15 seconds. What are you going to do? Probably open the library. But you start at 10 and know you won’t be paid for the extra half-hour because you shouldn’t be here, and what if there’s a bus pass and what if you have to close again immediately and be sent to another branch and what if they’re lost or dead or injured or maybe they’re panicking!
It’s 09:30. You open the library. You do not cry or panic. One of the regulars comments “You on your tod again today?”. Yes. Yes, you are. No one has an urgent problem, so you stand by the window looking out for your colleague.
At 09:31 you phone the big branch to ask if everything’s alright and if your colleague’s called in sick. They haven’t. The big branch is busy and they don’t have time for this right now. Your colleague must have gotten in trouble on their way to work. Some kind of accident or injury or something. They’re probably dead. Maybe you shouldn’t have opened the library. Maybe you should do the book drop. Maybe you’ll be lone working all day. Should you tweet that you’re closing for lunch?
At 09:32:18 your colleague arrives. “Traffic”.
…at 10:00 you officially start work, so by 09:57 you manage to convince yourself you’ll be okay.
You’ll be okay.
Or even this…
You can’t think through noises.
You can’t figure out how to use your phone.
It’s too loud.
Everything is too loud.
Your head is on the ground and the floor is hard and cold and you’re trying to think.
You remember you’re not supposed to bite the inside of your cheek, so you bite your tongue instead.
The floor isn’t cold enough.
You need to feel more pressure maybe.
You can’t breathe.
You hug yourself and scrunch up your eyes and you can’t think.
You can’t think.
…
You bite through the inside of your cheek.
…
An hour later there are noises and people and you need them to stop and you can’t talk.
You can’t talk.
You need a cup of water and your sunglasses and ear defenders and lip balm and weighted mammoth.
You can’t understand what they’re saying.
…
You need them to not be touching you!
…
You need them to stop touching you!
You can’t think through people touching you.
…
Water.
Ear defenders.
Monty the mammoth.
Be calm.
…
You sit calmly. You do your grounding exercises. You hold your mammoth. You drink your water. You will be okay.
…
You’re sorry. It was all too much. You don’t want it to happen again. You’ll say something before it happens next time. There won’t be a next time. You’re fine. This is rare. You’re doing well.
(There will be a next time).
The reason you have a day off in between every workday is because autism is exhausting.
It’s exhausting even without getting into the fact that other people are different and alien and don’t make any sense.
But the library is one of the good parts.
For £10.35 an hour (£9.50 on weekends), you run a library and you are happy.
You’d happily pay £10.35 an hour for the joy of it, but that’s possibly because you’re still not great at budgeting.
You have thousands of books. They’re your books.
You unpacked them and stamped them and gave them homes on your shelves, and you allow anyone to borrow them as long as they promise to bring them back in three weeks.
You help people with the computers.
You show them the simplest way to print a returns label, and offer them some children’s scissors and sticky tape so they can post their parcel on the way home.
You tell them that if their phone usually remembers their password for them, they can find it by going to Settings and then Passwords.
You help people travel the world with flight tickets and covid passes. People complain to you that “everything’s online these days,” but you think it’s sort of cool because that means you can help with everything.
You make bus passes.
“Smile as if you’re about to get on a bus!” is one of your catchphrases.
You’re a fountain of bus knowledge. You know about the secret buses on Saturdays, which companies let you use your pass before 9.30, and the best places to make connections.
You run amazing events.
You have about as much patience as the children, so you have a great instinct for when to abridge a book or song at Rhymetime. Your current favourite book is Superworm, and you skip over the entire plot in favour of just reading about how great the worm is.
The regular kids think Wiggly Woo is a snail song, The Wheels on the Bus is about dinosaurs, and Sleeping Bunnies can be sung about any animal, including snakes. Their grown-ups can now predict the punchline to every new joke you invent, and you know which ones to look to for help when you lose count in Five Little Ducks.
You even make library cards and amaze people with the services we have to offer.
“Children’s books can be reserved for free on a child’s library card, which means that if there’s a book you want to read but we don’t have it here, then if another library in Surrey or Essex or half of London has it, we can bring it here for you to borrow as if it was one of our books!”
You also make sure everyone gets a sticker for joining, and a sticker for using the self-service machine for the first time.
Libraries and chocolate milk are two of your favourite things in the world, and from your perspective, sitting in your library drinking chocolate milk means you grew up to be happy. You didn’t become an astronaut with several PhDs, and you don’t live in Paris with four pet rabbits, but you have libraries and chocolate milk and you’re happy.
You know now that you possibly can’t fix the whole world, but you can work in a library.
Things are good.
Things are good.
One of my favourite ever library moments was when I was running Lego Club in Slough Library, and a couple of the parents of the kids who came from the local special school asked if I was autistic. We then had a great and open conversation, and one said that it was amazing having me run the club, because I gave them hope that their kids would grow up to be like me.
Honestly, at that moment I rather hoped their kids would grow up to struggle much less than me.
But that was more than two years ago now. Life’s got easier since then. I’ve grown to accept my autism, and I have more support to help me cope with the world. Things are good.
I’m only an expert on myself. Even then I don’t always have the greatest insight, so I’m not quite ready to give tips on how to fix the world to make things easier for all autistic people.
One thing I dislike is when people with autism or learning disabilities are referred to as “individuals”. Or “the individual”. We don’t use that word when referring to anyone else, and it comes across as othering. However, there is a lot of disagreement between autistic people and those around them about language, so my preferences won’t reflect everyone.
My favourite thing a professional working with me has ever done is my current community nurse rephrasing questions if I say I don’t know the answer, even when he knows I should know. If it’s a question I’m not expecting, I can’t always find the right thoughts and turn them into words. Especially not while everyone’s looking at me. That’s why it’s also really useful to be able to have a friend or carer with me during appointments – they can often find the words I can’t.
Here are some of my favourite non-fiction autism books:
When you want a simple, easy-to-read metaphorical explanation:
F1 is the biggest racing series in the world and is slowly becoming one of the world’s biggest global sports. They race globally every year and are known as the “pinnacle of motorsport”.
Ten teams race two cars and two drivers across 23 races (as of the 2022 season) around the world every year to determine the World Driver’s Championship.
In recent times, F1 has shown support to people of colour, from different ethnic backgrounds, and people from the LGBTQ+ community.
What F1 and its teams and drivers doing to support the LGBTQ+ community?
“We Race as One” campaign
In July 2020, F1 introduced the “We Race as One” campaign, which was used to spread awareness to the COVID-19 pandemic, and also it brings attention to the fight against inequality to ethnic groups and the LGBTQ+ community.
The logo consisted of a rainbow which was the colours of all the 10 teams on the F1 grid, which matched with the name “We Race as One”. These logos are placed predominantly on the F1 tracks, and it is also placed on some of the cars and driver race suits.
Sir Lewis Hamilton
Lewis Hamilton will go down as a racing legend, with 7 world champion titles, and more than 100 race wins.
But he will also go down as a legend for the work he has done for minority groups. He is very vocal about supporting minority groups, including the LGBTQ+ community.
In 2021, Lewis wore a helmet with the colours of the LGBTQ+ rainbow flag in 3 countries with very strong prejudice and laws against LGBTQ+ rights.
“[For the LGBTQ+ community] there’s prison time, death penalty and restrictions from people for being themselves, and I don’t believe in that.”
Lewis said, before the 2021 Saudi Arabian Grand Prix.
Lewis wearing his world famous pride helmet, after winning the 2021 Saudi Arabian Grand Prix.
The helmet read “We Stand Together” on the back of the helmet. He faced major backlash for this from locals and some officials, but still went ahead with it anyway in Qatar, Saudi Arabia, and Abu Dhabi.
“I will wear that helmet again here and in the next race [in Abu Dhabi] because it is an issue. If anyone wants to take time to read what the law is for the LGBT+ community, it is pretty terrifying. There are changes that need to be made.”
Sebastian Vettel
Another driver who is very vocal about LGBTQ+ rights is German 4-time world champion Sebastian Vettel.
“I often get the question ‘Why is this important to you?’ This is not important to me, this is important to all of us.”
Sebastian said, after being asked why he chooses to speak up on social and environmental issues.
Before the 2021 Hungarian Grand Prix, he was wearing a shirt and mask in the colours of the LGBTQ+ flag with the words “Same Love” written on the shirt.
Sebastian wearing the “Same Love” shirt before the 2021 Hungarian Grand Prix
He received criticism for this as Hungary is a country with very strong anti LGBTQ+ laws in place, and just 24 days before the race, the Hungarian government released more anti-LGBTQ+ laws, which targeted content which features homosexuality.
He also was the first F1 driver to feature on the cover of Attitude Magazine, as an ally to the LGBT community.
Attitude Magazine, with Sebastian Vettel on the front cover.
Abbie Eaton
Abbie Eaton is a racer who currently races in W Series, which is a formula series exclusively for women. She is known as the test driver on Amazon’s The Grand Tour, which starred Jeremy Clarkson, Richard Hammond, and James May.
She would drive the latest cars around the Grand Tour test track, and she also featured in other episodes. She is also an ambassador for Racing Pride, she hopes by doing this she can break stereotypes in motorsport.
Racing Pride is a positive movement about breaking down stereotypes and it creates an opportunity to show that the sport we love can be a welcoming environment for LGBTQ+ people like myself. I am very happy to be playing my part in that.
Abbie speaking about joining Racing Pride
The Power of Celebrity Voices
Both these drivers also use their strong media presence to get these messages across. Lewis expresses his messages to his 28 million Instagram followers, and he sometimes may include messages in post-race interviews.
Lewis Hamilton’s Instagram account
Sebastian does not use social media, but he uses other methods, such as custom helmet designs, and other forms of publicity stunts to show his support, such as wearing shirts and speaking on this to tv channels.
For example, he featured on BBC Question Time, where he spoke on climate change and other world matters.
Sebastian Vettel on BBC’S Question Time
In the past, racing drivers were not as free to share their opinions, on track or off track, but in more recent times, thanks to the dawn of social media, drivers can now feel freer to post their opinions on Instagram, and they feel free to speak about them on track, which is seen by millions of people.
Sebastian and Lewis are also not the only drivers to share their voice, other drivers also wear shirts with special messages on them during pre-race celebrations.
7 drivers, including Lewis and Sebastian wearing “End Racism” shirts before the 2020 Austrian GP.
Racing Pride
Racing Pride is a movement which was made to promote LGBTQ+ inclusivity in motorsport.
They were formed in 2019, and they intend to make “significant and lasting change” to motorsport.”
The community comprises of drivers, team members and track marshals from the LGBTQ+ community.
They work with Formula drivers from the LGBTQ+ community, including Abbie Eaton.
They have also worked with Aston Martin F1, Alpine F1 Team and Sebastian Vettel.
Pride 2022, find out what F1 are doing this Pride Month
One way F1 teams and drivers have been showing support is by adding special touches to the liveries of the race cars, and race suits and helmets.
In June 2022, in time for Pride Month, F1 teams have made changes to their liveries in support of the LGBTQ+ community.
Mercedes AMG F1 Team are racing with the “Pride Edition” version of their three-pointed star for the month of June, which is placed on the front of the Mercedes W13 car, and on the helmets of Lewis Hamilton and George Russell.
The Mercedes W13, adorning the special Mercedes “Pride Star”Lewis Hamilton and George Russell, sporting their 2022 helmets, which will also wear the Mercedes Pride Star for the month of June.
“Let’s use it for the rest of the year.!”
Lewis said on Instagram, after revealing the Mercedes Pride Star on his helmet.
Alpine F1 Team are also working with Racing Pride, and they have also placed the Pride Flag on their cars, above the engine cover.
The Alpine A522 car, wearing a Pride Flag above the engine cover
McLaren F1 Team have also put a rainbow on their famous speed mark logo, which is placed on their MCL36 car, alongside working with Mind, supporting LGBTQ+ people’s mental health.
The special McLaren Pride Speedmark, sitting on the bodywork of the MCL36.
Scuderia Ferrari, one of the oldest F1 teams, also have the “essereFerrari” (meaning Spirit of Ferrari) in Pride Colours, which features on the front wing of the F1-75 car, and the helmets of both drivers, Charles Leclerc, and Carlos Sainz.
The front wing of the F1-75, with the #essereFerarri in Pride colours.
Looking into the future
F1 themselves do not have any openly gay drivers, but this is not something they are against.
“Perhaps it wouldn’t have been the case in the past, but now I think a gay Formula One driver would be welcomed, and rightly so,”
Sebastian Vettel, speaking in Attitude Magazine
There is plenty of young talent in the younger Formulas who are looking to join F1 in the future, and with all the work that Racing Pride have done for the motorsport world, and these powerful voices in the F1 community, we can surely be ready to see members join soon.
F1 does have many openly gay team members in the garage working for the teams, who work on the cars making sure they can be as fast as possible for the drivers who drive them.
On Wednesday 29th June, ATLAS is taking part in consultation about the SEND and Alternative Provision Green Paper alongside the Council for Disabled Children. All young people who take part will receive a £15 voucher for their time and expertise!
If you are a young person with additional needs and disabilities living in Surrey (UK) and want to be involved, get in touch with us through social media or email us: ATLAS@surreycc.gov.uk
What is the SEND and Alternative Provision Green Paper?
The SEND and Alternative Provision Green Paper is a Review into the SEND system that the Department for Education made in 2019, they did this to understand why the system was struggling, despite the potential and vision of the Children and Families Act 2014 as it was becoming financially unsustainable and wasn’t always resulting in positive outcomes. In March 2022 the Review was published as a Green Paper paving the way for change.
Green Papers are consultation documents produced by the Government that looks at several key areas in the system that need change and make proposals for that change. These include national standards, role of schools, education, health and care plans, accountability, and support. The aim of the Green Paper is to allow people both inside and outside Parliament to give the department feedback on its policy or legislative proposals.
What is the SEND Review?
The SEND Review looks at ways to make sure that the SEND system is reliable, high quality and united across education, health, and care. It also makes sure that money is being spent fairly, efficiently, and effectively as well as making sure that the support available to children and young people is sustainable in the future. This is being led by the Department for Education, working closely with other government departments / partners in education, health, and social care.
What is their next step?
A consultation phase will be taking place where a group of stakeholders will have an opportunity to review and reflect on the proposals, giving families frustrated by the existing, complicated, and bureaucratic system of support the opportunity to shape how a new system will work in the future and give them confidence that their local school will meet their children’s needs so they can achieve their full potential.
3 key challenges facing the SEND and alternative provision system.
Navigating the SEND system and alternative systems is not a positive experience for too many children, young people and their families.
Outcomes for children and young people with SEND systems or in alternative ones are consistently worse.
Despite the continuing investment, the system is not financially sustainable.
Detailed proposals in the SEND and alternative provision green paper include:
The consultation will be looking at the following proposals:
Setting new national standards across education, health and care to build on the foundations created through the Children and Families Act 2014, for a higher performing SEND system.
A simplified EHCP through plans to make them more flexible, supporting parents to make informed choices with a list of appropriate placements tailored to their child’s needs meaning less time spent researching for the right school.
Councils to introduce ‘local inclusion plans’ that bring together early years, schools and post-16 education with health and care services, improving oversight and transparency through the publication of new ‘local inclusion dashboards’ to make roles and responsibilities of all partners within the system clearer for parents and young people, helping to make better outcomes.
A new national framework for councils to match national standards and offer clarity on the level of support expected and put the system on financial stability in the future, changing the culture and practice in mainstream education to be more inclusive and better at identifying and supporting needs, including earlier intervention and improved support.
Improving workforce training through the introduction of a new SENCo NPQ for school SENCos and increasing the number of staff with an accredited level 3 qualification in early years settings.
A reformed and integrated role for alternative provision (AP), with a new delivery model in every local area focused on early intervention. AP will form an integral part of local SEND systems with improvements to settings and more funding stability.
Modern Family is an American family sitcom / mockumentary which revolves around three different types of families (The Dunphys, The Pritchetts and the Tucker-Pritchetts) who are all interconnected to each other through Jay Pritchett, the patriarch (Grandfather/Father) of the family. The show was incredibly popular, and it ran for 11 seasons from 2009 until 2020.
Throughout the series, the show tackled a lot of themes either relating to the family or to real life issues in the world around them such as love, bullying, age differences, family values. However, in this blog, we will be focusing on the theme of LGBTQ+ due to two of the main characters, Mitch and Cam, being a gay couple in the series.
How Mitch and Cam are presented in the show.
Mitch and Cam are main characters in Modern Family as well as being an LGBTQ couple, they appeared in nearly every episode throughout the show’s run as well as being a part of major storylines that either involved their family, the LGBTQ community, or a mixture of both worlds due to them getting married in Season 5 with their loving and supportive family by their side.
When we were first introduced to them in the first episode, they adopted a Vietnamese girl called Lily who they raised and deeply loved and the family fell in love with her when they introduced her in the first episode. In Season 3, they attempted to adopt another baby but sadly didn’t succeed, however by Season 11, they decided to adopt a baby boy after their adoption profile was reactivated.
A major storyline around Mitch and Cam started in the first episode of season 5 after it was revealed that California has legalised gay marriage, Mitch and Cam proposed to each other by the end of the first episode even though a few members of the family were helping both out with their own separate proposals.
Throughout Season 5, a few of the episodes built up the hype for Mitch and Cam’s wedding such as one episode introducing a new LGBTQ character to help with designing the wedding, those episodes all finally led up to the finale where Mitch and Cam finally get married in front of their friends and family even though there were many mishaps along the way.
How Jay’s views of the LGBTQ community change over the series
Jay was presented as a traditional old white American when the series began, and it was mentioned that Mitch had to come out to him three times due to him not understanding why his son is gay which led to their relationship becoming strained. Even though he becomes closer to them, there were moments that his old ideals got the better of him.
An example of this was in an episode of season one where Jay introduced Cam as his son’s friend which made Mitch mad at him and pointed out that Jay’s friend might be gay. This prompted Jay to become supportive and comforts his friend, even though this was revealed to be a way of Mitch getting back at his dad, it shows how he deeply supports Mitch.
Another moment where Jay’s old ideals backfired heavily on him was when he couldn’t get his head around Mitch and Cam’s wedding and claims that he didn’t want it to be a massive spectacle in the episode before the season 5 finale which caused a massive rift between him and Mitch.
However, in the finale, Jay realised the errors of his ways and redeemed himself to show his love and appreciation for the wedding as well as Mitch and Cam by not only providing his golf club as a venue to the wedding, but he also walked Mitch down the aisle.
Even though he never said it, it is shown how he loves them deeply at certain points in the show by helping with the renovation of their burned down kitchen, bonding with Cam over football, and interacting with their LGBTQ friends. But in the finale of Modern Family, he announces that he loves Cam like another son to him as well as Mitch. The show explored this personal growth from homophobia to acceptance and understanding.
What themes around LGBTQ were shown in Modern Family?
Modern Family never shied away from tackling stereotypical topics in a few of the episodes as well as addressing real life issues that’s been happening in some of the episodes in the series or throughout the things that they say or mention.
Mitch never acted like a stereotypical gay person and his actor, Jesse Tyler Ferguson, is also gay and could therefore bring his lived experiences into the role. Cam did sometimes act flamboyantly in the earlier seasons, however both characters have their own individual aspirations such as Mitch being a lawyer and Cam having various careers before settling in as a openly gay football coach.
There were a few instances where there were some homophobic phrases or references to homophobia in the show, some examples comes from the first ever episode of the show when Mitch presumed someone called them “Cream Puffs” while the person was actually were commenting on the cream puffs that they were eating. Another example came from an episode where Hayley suggested that Alex was a lesbian though this wasn’t true. This was a powerful way for the show to address real life issues of discrimination in the LGBTQ+ community through comedy.
Did Modern Family impact the media / the world with their LGBTQ Representation?
Throughout its 11 year run, Modern Family inspired other TV shows to either bring in more LGBTQ characters due to Modern Family having a few number of LGBTQ supporting characters as well as having Mitch and Cam as their main characters.
The show also made other TV channels make sure that they had a better and positive portrayal to their own LGBTQ couples or main /supporting supporting characters without causing any offense to them.
Conclusion
In summary, Modern Family did represent the LGBTQ+ community to a high standard throughout the show’s run and made Mitch and Cam one of the most iconic couples in the media due to their stories and relationship throughout Modern Family. They also employed a gay actor to play a gay man which is important not only for representation but in ensuring the characters and stories are realistic.
Billie Eilish is a well-known international pop icon and lives in America, she has released two albums and an EP, she is also a seven-time Grammy Award winner, and she lives every day with Tourette Syndrome.
What is Tourette’s Syndrome?
Tourette’s is a nervous system disorder that presents with repetitive and uncontrolled movements (liking blinking or shoulder shrugging) or sounds. These are called “tics”. The condition is often present from childhood, but can be diagnosed later in life.
Billie shared that she’s had Tourette’s her “whole life”.
Billie Eilish and Tourette’s
While Billie has spoken openly about her experience with Tourette Syndrome, she hasn’t gone into too much detail.
Billie also hasn’t spoken about what her tics are, only that “certain things” can increase the intensity or trigger episodes.
Unfortunately, fans made YouTube videos of her tics which include her shrugging her shoulders, blinking rapidly, and looking upward. As a result, Billie shared her diagnosis through Instagram:
“I would love to get this straight so everyone can stop acting goofy… I have diagnosed Tourette’s … My Tourette’s makes easy things a lot harder. Certain things increase and/or trigger the intensity of the tics. But it’s something I grew up with and am used to … suppressing them only makes things worse after the moment is over“
Extract from Billie’s post on Instagram revealing her Tourette’s diagnosis
Billie has talked more about living with Tourette Syndrome in an interview with Ellen DeGeneres in 2019. She said on Ellen that she hadn’t spoken publicly about her condition before because she didn’t want her condition to define her. However, she now feels more positively about sharing her diagnosis:
“I think I also really learned that a lot of my fans have it, which made me feel kind of more at home with saying it, and also I felt like there was a connection there”.
That’s not the only interview Billie has done about Tourette’s. She gave fans insight into what her episodes are like while speaking in another interview one month prior:
“The internet hasn’t really seen the bad ones [tics], because I’m really good at suppressing them. The thing is, the longer you suppress them, the worse they get afterwards.”
Billie also talked a bit about her Tourette’s in a much recent interview this year with David Letterman on his Netflix show: My Next Guest Needs No Introduction. She shared how people react to her tics and how certain things sets the tics off, such as the lights.
“The most common way people react is they laugh. Because they think I’m trying to be funny. They think I’m doing a funny move. And so they go, like, “Ha!” And I’m always left incredibly offended by that, or they go “What?” and then I go, “I have Tourettes”“
She also talks about how other artists have shared with her that they also have Tourette’s:
“So many people have it that you would never know, a couple artists came forward and said, “I’ve always had Tourettes.” I’m not gonna out them, they don’t wanna talk about it. But that was actually really interesting to me, because I was like “You do?” Like, “What?”
Picture taken of Billie on stage in the 02 by Joshua Buxton
On Saturday 11th June, one of our apprentices, Joshua Buxton, went to see Billie Eilish at the O2 in London, here is what he had to say about his experience:
“Billie’s concert on Saturday was the best concert I have ever been to, it was amazing seeing Billie in real life for the first time and singing along to all of my favourite songs as well. She also interacted with everyone in the audience as well as making sure that everyone was safe and enjoying themselves during the show, I had a great time and I cannot wait for the next concert!”
On Saturday 23rd of April we had a lovely day out to Bockett’s Farm as a way of celebrating National Pet Month. During our visit we discussed the importance of assistance animals for people with additional needs and disabilities as well as how animals has helped them.
At the farm we were allocated our own spacious barn where we had lunch and ATLAS were given yummy Easter eggs that had kindly been donated from ADP and Enterprise. Our barn could also be us as a safe space if needed. We were able to do lots of fun activities with the animals. Firstly, we walked around the farm where we saw horses, ponies, Shetland ponies and Giant Poitou Donkeys at the stable which was a fan favourite among ATLAS members as many of them didn’t want to leave theses friendly animals. We also went to the Animal Discovery Barn where we meet fluffy sheep’s, goats, llamas, pigs, and cows up close; lots of pictures were taken of these cute animals. After lunch we went on another farm walk where we discovered llamas and Swedish Fallow deer grazing peacefully in their paddocks. Then we went over to Little Hoppington were we met cute furry little friends which included rabbits, degu, pigs, and rats. During this time, we were able to have our animal encounter where we could pet pretty rabbits, a happy chicken, and a fun guinea pig. Since so many pictures were taken of the animals, we had a mini photography and video competition where the winner was able to buy something in the gift shop which was full of fun things to choose form. ATLAS members really enjoyed the trip as many of them find animals a personal comfort and relaxing to spend time with, some talked about their pets who help them to feel calm. 😊
If you would like more information or to join ATLAS, please email us at: ATLAS@surreycc.gov.uk where you join in fun on opportunities such as our trips.
Alternatively, you can message us on social media:
One of the ATLAS members petting a adorable black rabbit ATLAS member petting a sweet black rabbitATLAS member petting a sweet black rabbitA photo of two friendly goats
Epilepsy is a condition that causes seizures this is due to an imbalance in brain chemistry so messages that travel between nerve cells or neurons become scrambled. A seizure is a burst of uncontrolled electrical brain activity between the brain cells common symptoms of this are stiffening or jerking of muscles, confusion, loss of consciousness, unusual thoughts or sensations.
Here are the most common types of seizures in individuals with autism:
Generalised tonic-clonic seizures sometimes called generalised onset motor seizures– it affects both halves of the brain and causes both stiffening of muscles and twitching or jerking.
Focal Onset Aware Seizures- they start in one area of the brain and may cause loss of awareness, or the person remain fully aware during the episode. This is the most common type of seizure for those who have epilepsy.
Febrile seizures- this type of seizure happens to children aged 3 months to 6 years and they occur when the child has a high fever. This may be either a general or focal seizure. Sometimes this may lead up to the development of epilepsy.
Is there a link between autism and epilepsy?
Yes
20-40% of people with autism have epilepsy. Autistic people are more likely to develop epilepsy compared to those who are neurotypical and people with epilepsy are more likely to be autistic than those without. The risk of developing seizures increases as person gets older in life.
One theory suggests that the overlap in conditions may be because they share common biological mechanisms such as too much excitation brain which may stem from too little inhibition (an imbalance of the two). However, many experts remain sceptical about this theory despite the data to support this claim from a study published in 2003.
Other disorders related to involve seizures also involve seizures these include Landau-Kleffner Syndrome, Rett Syndrome, Angelman Syndrome and Tuberous sclerosis complex and Fragile X and many other syndromes.
Potential signs to look out for
It can be difficult to recognize seizure activity when the person is autistic this may be because of communication barriers and the overlap in symptoms of the two. Cognitive delay, impaired social interaction, aggression and irritable behaviour can be seen in children with epilepsy but also if in those who are autistic as well which makes it confusing to find the cause.
However, there are some red flags to note for seizure which may be useful:
Staring episodes (could be a sign of absence or atypical absence seizures)
Stiffening (could be a sign of tonic seizures)
Rhythmic shaking or twitching (could be a sign of focal aware/simple partial seizures)
Loss of attention (could be assign of absence or focal impaired awareness/complex seizures)
Atypical absence seizure– Starts in both sides of the brain and is unusual or different compared to typical absence seizures.
Absence seizures– Starts in both sides of the brain and causes a short period of “blanking out” or staring into spaces.
Focal onset impaired awareness seizure– Begins in one side of the brain and the person has a change in their level of awareness during some or all of the seizure.
Tips for managing epilepsy.
Know that it could happen– making sure friends, family and carers are aware the possibility of epilepsy developing in someone with autism.
Get a personalised plan– creating a plan with doctors can help family and healthcare professionals to manage the seizures.
Regular medication– it’s important to medication as instructed if prescribed.
Identify triggers-not everyone has triggers before a seizure but common signs to look out for is being overtired, missing meals and forgetting to take epilepsy medication. Keeping a diary of seizures can help to see if there are any triggers.
Avoid heavy drinking– heavy drinking can cause seizures and make medication less effective.
Regular reviews– this is important as it can see if your treatment plan is going well. If you find doctors appointment there are many adaptions in place to make this experience less stressful like asking if there is a quiet room or asking to book the first or last appointment of the day, so you don’t have to wait too long for example.
Safety checks– a safety check can help to identify and lower the risks before someone with epilepsy does an activity.
Side effects of anti-epileptic drugs (AEDs)
AEDs are the most common used treatment for epilepsy and can be quite effective as they can help to control seizures in around 7 out of 10 people. However, side effects are common when starting the treatment and may pass in a few days or weeks or may not appear for a few weeks.
Some common side effects of AEDs include:
A lack of energy
Agitation
Headaches
Drowsiness
Uncontrollable shaking (tremors)
Unwanted hair growth or hair loss
Swollen gums
Rashes – this could a sign of a serious reaction so you should contact your GP or specialist.
Disclaimer- The medical information presented here is just information, not medical advice and should be used for educational purposes. If medical advice is needed you should consult your GP or any other appropriate medical professional.
Tom Stoltman after winning WSM 2022Tom Stoltman after winning WSM (world’s strongest man) 2021
Who is Tom Stoltman?:
Tom Stoltman is the current worlds strongest man after winning the competition in May 2022. He is also the:
2021 Worlds Strongest man
World record holder for the heaviest Atlas stone ever lifted (286kg!),
A two-time back-to-back winner of Britain’s strongest man,
A two-time winner of Scotland’s strongest man along with many other incredible podiums such as 3rd in worlds ultimate strongman and 2nd in the 2021 giants live finals.
Tom was diagnosed with autism when he was 8 years old and has spoken about his own struggles inside and outside of school. He has mentioned being bullied and worrying about what people would think if they found out he was autistic.
Tom and, his brother, Luke Stoltman competing and cheering each other on
Tom’s Autism – in his own words.
“I kept autism hidden”
“I didn’t want my mates to laugh at me”
However, he mentions that after telling his friends and others about his autism he felt a tremendous amount of relief after being accepted and supported by them. His friends made sure that he knew they accepted him for who he was and that it didn’t change a thing about their friendship which is truly phenomenal.
Luke Stoltman (Tom’s brother) has also talked about Tom’s experiences and growing up with him when he was younger. Referencing times that Tom would really struggle, he says,
“if mum went out shopping, he (Tom) wouldn’t stop crying till she came back” and that “he wouldn’t go anywhere by himself”
Tom has said that he found it difficult when something didn’t go as planned, as he would become fearful and potentially breakdown. This also wasn’t helped when others would say that it didn’t matter, as this just made him feel very different to his friends and others.
Tom saw a great change in his life when he was first invited to go the gym by his older brother Luke as this was the start of an incredible ongoing career in the internationally competitive arena of ‘strongman’ for both. Tom found comfort in pushing himself in the gym as he mentioned he didn’t get along with the more traditional side of school such as maths and English, but he truly thrived when it came to Physical education and many other sports.
Tom, and his brother, Luke Stoltman after Toms win at World’s strongest man 2021
What he has done for the awareness of autism–
Tom Stoltman has gone on many podcasts, interviews and has personally made videos on him and his brothers YouTube channel. Some of these are linked below. He has been quoted saying phenomenal things such as:
“Autism is my secret weapon” and that it should be
“Used as a superpower”, he has also talked about how that just because he is labelled that it doesn’t make him different. He strives to be an example to other autistic children and show them that they too will achieve incredible things.
Sensory Processing Disorder (SPD) is an additional need and disability that affects how your brain processes your senses. It can affect all of the senses, sometimes all at once or sometimes individually.
How does SPD affect me?
It takes a while to process information and the things I do in day-to-day life. It can take me longer to do things because I am thinking about it constantly.
Some examples of things that are difficult:
Sound
It’s a struggle to find things that are not too loud.
Fire alarms are a very fast and loud sound that really hurts my ears. Ear defenders can help block out the sound – they are not for listening to music!
Touch
Some textures can be overwhelming.
I don’t like people to touch me without asking me beforehand unless it is an emergency.
Sight
Sunlight can be too bright!
Flashing lights can make it difficult for me to see and I can find that they are sensory overloading.
Smoke (Fire) – can’t see where you are going/irritates the eyes and makes them itchy.
Taste
I don’t like lumpy mash! How food feels in my mouth is really important. It can change over time what textures I like and those I don’t: I used to not like nuts but now I do!
I don’t drink squash at all now, I try to cut it out. Water on its own is good.
Smell
Nail varnish, petrol, and cigarettes are smells that are too strong. If they come close to me, I need to get away.
Other
Crowds can be claustrophobic as there is not much room: there is so many people around that you can’t move around properly.
New places and new people because there is lots of new information I have to process!
Even though I find some sensory experiences difficult, I also use sensory experiences to help myself and keep myself calm. Some things that I enjoy:
Sound
Classical Disney music, normally piano music because I find it a quiet, mindful sort of sound.
Nature sounds, especially quiet song birds.
Touch
Squishy Fidget toys and cuddly soft toys are very comforting, ground me, and help me to feel secure. Cuddly toys are really helpful when you need to go to sleep.
Blankets are really useful too. I like blankets to be smooth and soft to touch, dark blue in colour. I like blue when I am trying to sleep.
I like it when people I trust and know tuck me into bed, link arms with me, or sometimes give me a hug!
Petting my dog, Honey, can help me calm down quickly. Lots of people find pets helpful!
Sight
I like looking up at the stars in the sky at night. Which also helps me go to sleep because it is dark.
Taste
Soft and smooth textures – like when you are eating yoghurt.
Smell
The smell of homemade food, for example cauliflower cheese as well as chips. It is really comforting!
Temperature
I prefer cold temperatures, for example in sensory rooms where they are often normal to cold temperatures with a heater if you need it.
How you can support someone with SPD?
If they are struggling, you can:
Take them to a quiet room.
Help them find their fidget toys, or provide them with some.
Play some music that they enjoy.
Offer them a glass of water.
If they need you to, repeat information.
Do not judge them.
Do not stare at them.
Be patient and understanding.
Call their support person if they become non-verbal or give them something to write on.
Mythbusters are a group of eighteen ambassadors who are using their platforms to tackle the stigma and lack of awareness around learning disabilities.
One of the ambassadors Jessica Jane who is a Paralympic champion and campaigner wants more people to know that just because a person does not look like they have a disability, does not mean that they don’t.
Who is ATLAS and what do they do?
ATLAS (Accept, Teach, Listen, Access, Support) is a participation group run by the User Voice and Participation team also does similar work as Mencap, by empowering children and young people (Their parents and carers involved too) with additional needs and disabilities to share their opinions about the services they use.
This is what some of their objectives are:
To raise our voices on important topics from the perspective of young people with additional needs and disabilities, living in Surrey (UK)
To provide feedback on and co-produce Surrey services for young people with additional needs and disabilities
To create a safe space for young people with additional needs and disabilities to share their experiences confidentially
If you want to read their other objectives, as well as other information about ATLAS, go on to this link:
ATLAS sessions take place (Virtual and in person) on the first and third Wednesdays of each month, the location of the sessions is in Epsom and Woking.
Atlas Ambassadors
ATLAS also has ambassadors, these ambassadors help by raising the voices of all the ATLAS members and supporting with how the groups are run.
If you want to know more information about the groups, then go on to this link:
In order to achieve their objects, ATLAS have made selected a couple of areas that need to be prioritised, these are some of the areas that they have made a priority:
Ableism, Stigma and Discrimination
‘Able-Bodied’ should not be the goal
Power of language and attitudes
Media Representation
Need for co-production and professionals with lived experience
Self-description
Autism
Acceptance
Awareness
Emergency services
Helping professionals to understand how to work with autistic people -Co-morbidity with mental health
If you want to read about other areas that ATLAS have made a priority, then go on to this link:
Action cards are themes and topics that young people raise as important issues that need immediate action.
An action card is raised when four or more young people share similar feedback or think that it should be raised on a specific topic.
The UVP team then step in and share what the young people have said to the relevant services, and in return receive a response from them within two months.
Action cards can only be closed with the consent of children and young people.
If you would like further information about Mencap and ATLAS, then you can follow them on social media, their social media will be listed down below.
Stephen Hawking was an English theoretical physicist (a scientist who uses maths, calculations, chemistry, and biology), cosmologist (a scientist who studies the universe) and author. He was also the director of research at the Centre for Theoretical Cosmology and the Professor of Mathematics at the University of Cambridge.
His life work includes the origins and structure of the universe, the discovery that black holes emits radiation as well as being an energetic supporter of quantum mechanics. Also, Stephen achieved profitable success with discussing his theories and cosmology in general.
Over the years, he wrote/co-wrote a total of 15 books. A few of the most noteworthy books that he wrote are A Brief History of Time, The Universe in a Nutshell, A Briefer History of Time, and The Grand Design.
What was his disability?
Stephen in front of a blackboard.
Even though he was born with no disabilities, in 1963, Stephen was diagnosed with an early-onset slow-progressing form of motor neurone disease which is known as amyotrophic lateral sclerosis (ALS) however, in the USA it is referred as Lou Gehrig’s disease. He had a life expectancy of 2 years, but he lived with the disease until he passed away in 2018.
The disease gradually paralysed him over the decades due to the nerves that controlled his muscles shutting down that led him to lose his mobility and had to use a wheelchair. After the loss of his speech, he communicated through a speech-generating device originally through use of a handheld switch and eventually by using a single cheek muscle.
How did the media accurately portray his life and disability?
Stephen Hawking in The Big Bang Theory (Left), The Simpsons (Middle) and Little Britain (Right)
Stephen had guest appearances on TV shows such as The Simpsons, Star Trek: The Next Generation, Futurama, and The Big Bang Theory. In 1992, a documentary about his life was released which was called A Brief History of Time.
He also hosted and narrated Genius, a six-part television series which tackled scientific questions that have been asked throughout history. Stephen was also featured in another biographical documentary film called Hawking in 2013.
Benedict Cumberbatch as Stephen Hawking in Hawking (2004)
He had two autobiographical movies about his life, the first one was called Hawking which premiered in the UK in April 2004 on BBC1, it had Benedict Cumberbatch playing him and focused on his early life as a PhD student at Cambridge University and the onset of motor neuron disease.
It was nominated for Best Single Drama in the BAFTA TV Awards in 2005. Benedict’s portrayal of Stephen Hawking was the first portrayal of the physicist on screen, and he won the Golden Nymph for Best Performance by an Actor in a TV Film / miniseries and received his first nomination for a BAFTA TV Award for Best Actor.
Eddie Redmayne as Stephen Hawking in The Theory of Everything (2015)
The second autobiographical movie about Stephen Hawking’s life was called The Theory of Everything which was released on January 1st, 2015 in the UK. This time Eddie Redmayne was cast to play Stephen Hawking. The film focused on his early life and school days, his marriage to Jane Wilde, the progression of his ALS and his scientific triumphs.
The film received a lot of praise and positive reviews as well as receiving multiple awards and nominations. Most of the praise went to Eddie’s portrayal of Stephen as he spent months researching all of Stephen’s interviews as well as his accent and speech patterns to accurately portray him.
Was he an inspiration to the disabled community?
Stephan’s quote about disability.
Even though it took him a while to accept his disability, he started to accept the mantle of role model for people with additional needs and disabilities in the 1990s by lecturing and participating in various fundraising activities. He also signed the Charter for the Third Millennium on Disability with eleven other humanitarians.
In August 2012, Stephen narrated the “Enlightenment” segment of the 2012 Summer Paralympics opening ceremony in London. In 2014 he accepted the Ice Bucket Challenge to promote ALS/MND awareness and raise contributions for research. His children volunteered to accept the challenge on his behalf as he was advised not to have ice poured over him.
As an autistic student who is about to sit their GCSEs, I find it an incredibly daunting time for many reasons- the workload, fear of failure and finding ways to revise. That’s why I’m going to share with you some tips that will make your life a bit easier.
Self care
Your mental health should always be your top priority. Period. Although it may not seem like it now, school is actually such a small part of our lives. Yes, it’s important to try your best in school to get the grades you need and deserve. However, in order to fully function and do that, we need to prioritise ourselves. Especially for people with autism, we need a sensory break from the senses around us. Have a nap. Do some skincare. Watch a TV series. Whatever it is, you deserve a break!
Revising little and often
There often is a misconception that you need to revise for hours and hours on end to get those desired grades. Actually, it has been proven that your brain can absorb information more efficiently if you revise in small consistent increments. Try out the pomodoro method- a video is linked below that explains it in more detail:
Find revision methods that work for YOU
We are always told that specific revision methods are supposed to be the holy grail for exam success- but do they work for everyone? Some people prefer to revise in a more hands on way and others prefer to make flashcards. Find methods that engage you and get the information to sink in. Some good revision strategies are using Quizlet or Anki flashcards and blurting. A video for blurting is here: https://youtu.be/GPRj1ZhG2Uw Both of these methods consist of active recall where you retrieve information from your brain. You can adapt these methods to be quizzes which you can test yourself with which can motivate you more to revise!
These exams don’t define you as a person!!
This time can be so pressuring for so many of us and we can sometimes think that these grades will determine our whole lives ahead of us and that we won’t make it into our chosen paths. The number or letter that we get on a piece of paper doesn’t determine our worth as a person, it’s actually far from it. It doesn’t show how kind or thoughtful we are. Whether you don’t get the grades you hope for or get better than you expect, you’re still an extraordinary human being. Remember that.
Know that whatever you’re feeling is valid
I’m here to let you know that however you may be feeling is completely valid. It’s completely okay to be feeling stressed, anxious or overwhelmed. In fact, it shows that you’re willing to do well and succeed. Use those feelings and channel them as power and motivation to get yourself to where you want to be. Your hard work will pay off and your future self will seriously thank you for it when you open that exam paper in the summer 🙂
Picture of the book Wonder (left) and Poster of the movie adaptation (right)
Wonder was published in 2012 and it was written by R.J. Palacio. Wonder tells the story of 10-year-old Auggie Pullman, a boy with facial differences and his experiences dealing with the condition as he adapts to regular school life. It comes with ups and downs that involves different forms of bullying.
However, there are also brighter aspects as the book also explores other themes such as friendship and compassion as well as Auggie’s journey and self-confidence throughout the book.
The book was popular enough with readers to receive three additional books that relates to the story called Auggie and Me, 365 of Wonder and We’re all Wonders. The novel also gained a film adaptation that was produced by Lionsgate.
The film adaptation of Wonder was released on November 17th, 2017. It received positive reviews from critics and audiences, with many praising the actor’s portrayal of the characters that were in the book including Jacob Tremblay who played Auggie in the movie.
How was Auggie’s disability presented in the novel / movie?
Auggie (played by Jacob Tremblay) in the film.
The disability that Auggie has in the novel and movie is called Treacher Collins syndrome. This is a rare genetic condition that affects the way a child’s face develops, especially the cheekbones, jaws, ears, and eyelids.
The book was inspired by a real-life encounter that the author’s son had with a child who had a similar disability to the one that Auggie has in the novel. This encounter as well as a song called “Wonder” inspired the author to write the book hoping that it could illustrate a valuable lesson.
Even though the movie was received well by viewers, there were heavy criticisms mainly from the disabled community about casting a non-disabled actor to play Auggie in the movie. He was made to look disfigured with extensive makeup and had to fake a speech impediment.
Jacob Tremblay did reach out to children with craniofacial differences to accurately portray their experiences, however the critics condemned the director for not trying hard enough to find an actual disabled actor to play Auggie.
How were certain topics tackled throughout the novel and movie?
From Left to Right: Jacob Tremblay as “Auggie,” Elle McKinnon as “Charlotte” and Noah Jupe as “Jack Will” in Wonder.
A major aspect that is presented in the novel and movie is that even though Wonder begins from Auggie’s point of view. However it soon switches to the perspectives of his classmates, his sister, her boyfriend, his best friend, and others.
The author did this as she wanted the reader to see how all the character’s voices converge to portray a community as it struggles with differences, as well as showing the true nature of empathy, compassion, acceptance, friendship, and kindness.
My final thoughts on Wonder
Even though the film is criticised for not trying to cast an actual disabled actor to play the role of Auggie which indirectly made the film less realistic, the story itself was really well written and won the hearts of everyone who has read the book and watched the film.
Rose Alying Ellis is a British actress who was born deaf and mostly relies on sign language, however she often performs using Sign-supported English to reflect her own communication style and make it clear for audiences to understand her. She first gained an interest in acting after taking part in a filming weekend that was run by the National Deaf Children’s Society. It was on that weekend that she met a deaf film director that would kickstart her entire acting career.
Rose first acting role in a 25-minute movie called “The End” that was an award-winning short movie. She took part in several stage productions and in a music video by the Vamps as well as being a part of other short films. Rose also had minor roles in certain TV shows such as Casualty before finally landing her big role in EastEnders as Frankie Bridge in 2020 and becoming the first deaf celebrity to be on Strictly Come Dancing and becoming the winner in 2021.
Her time on EastEnders
Rose as Frankie Bridge
EastEnders announced that Rose would be joining the cast as Frankie Bridge back in February 2020 and she wouldn’t make her on screen debut until a few months later. On the 18th of May, she was introduced as Ben Mitchell’s friend after he was diagnosed with deafness after the “Boat Crash” Storyline. She became a series regular while taking part in a few storylines in EastEnders over the past 2 years as well as getting a job at the Prince Albert Bar. She recently took a break from the show to focus on Strictly, however it was announced that she will return in the beginning of 2022.
The producers and writers of EastEnders were proud to create the soap’s first deaf character. They wanted to see more representation of deafness in the media and the use of sign language in scenes marks the first time it was used in any Soap Operas by an actual deaf actress. EastEnders also received a lot of praise with featuring a story on hearing loss and introducing a new deaf character. Rose also talked about her excitement with joining the cast and having her character being portrayed as a positive, upbeat person who embraces the deaf community and raises awareness for the deaf people in the UK and British Sign Language as well as being the first deaf character on the soap.
Her time on Strictly Come Dancing
Rose and Giovanni after winning Strictly Come Dancing 2021
On the 19th series of Strictly Come Dancing, Rose was one of the 15 celebrities that was confirmed to be taking part this year. This marked the first time that a Deaf Celebrity was on Strictly or on any other major shows such as I’m a Celebrity or Britain’s Got Talent. Rose won the hearts of the entire world and eventually went on to become the champions alongside her partner Giovanni Pernice. In an interview that she did before the show began, she said “I have a hearing aid, so I pick up some of the music and I can hear the beat. I can hear someone singing, but I can’t identify exact words. I also feel the vibrations” which made people believe that she will do well on the show.
During Rose’s time on Strictly Come Dancing, she rose more awareness to the deaf community as well as having some memorable moments such as scoring 40 points for their tango in week 6 which was the earliest “perfect score” in the show’s history. But in week 8, their Couple’s Choice dance featured a period of silence, this was included as a tribute to the deaf community, that same dance also won the TV Moment of the Year at the Heats Unmissable Awards.
How did she bring more awareness to the deaf community?
Since Rose won Strictly, she has raised more awareness of the deaf community helped to increase the number of people wanting to learn sign language: google searches for BSL have gone up by 448%. This would be beneficial as even learning a little bit of sign language can allow a hearing person to make a difference to the deaf community and help them understand one another. As well as that, she also shown how deaf people can do anything that they wanted to do.
Action Cards are themes and topics that you as young people raise as important issues that need action!
When 4 or more young people raise similar feedback or decide that an action card should be raised on a particular topic, an Action Card is raised.
The User Voice and Participation (UVP) Team then have 2 months to raise the voices of the young people and get a response from the relevant services to feedback for review.
Action Cards are only closed with the consent of children and young people.
This year, we are dividing Action Cards into National and Local Action Cards. We have done this so that we can categorise each action card and know which Action Cards relate to services specifically in Surrey and those that relate to the whole of the UK.
What is a Local Action Card?
A local action card relate to topics young people would like to stop, start or change in Surrey specifically.
What is a National Action Card?
A national action card is similar to the local action cards however it can relate to various different services around the UK.
What will we be doing this Year?
Going into 2022 we have a total:
3 Local Action Cards
6 National & Local Action Cards
4 Local Question Cards
1 National Question Card.
Local Action Cards:
Action Card 176:
As young people with additional needs and disabilities, ATLAS would like Special Schools to be renamed Specialist Schools, because Special is a euphemism for disability.
“Euphemisms are put on terms that are regarded badly by society.”
“I tend to use the term specialist when talking about schools instead of special. They are targeted for a specific thing, so they are specialist, not special.”
ATLAS Call for Action is: “Surrey Special Schools” to be renamed “Surrey Specialist Schools.”
Action Card 180:
As young people with additional needs and disabilities, we would like more information pre-and-post-16 transition including mental health support and what accommodation provision is available in Surrey for all young people with additional needs and disabilities, so that we know what options are available to us when we make decisions about our accommodation.
ATLAS Call for Action is: A booklet to be created for all young people in Surrey going through post 16 transition. The booklet will include post 16 information including mental health support and accommodation options.
Action Card 181:
As young people with additional needs and disabilities, we would like more information on what transport provision is available in Surrey for all young people with additional needs and disabilities trying to access education, work, and social activities, so that we can plan our routes and make sure that the choices we make during post-16 transition are accessible to us.
ATLAS Call for Action is: A webpage to be created to provide all travel options available for young people in Surrey.
Question Cards:
Question Card 18:
As young people in Surrey with Additional Needs and Disabilities, we want to know if there are any ‘Buddy Schemes’ during post 16 transition, so that we feel supported by peers and are able to build positive relationships.
Question Card 26:
As young people in Surrey with additional needs and disabilities, we would like to know whether there are protections in place to prevent letters containing private information from not sent to our parental homes, where there are safeguarding concerns. So that we feel comfortable knowing our thoughts and feelings are being contained.
Question Card 30:
As young people with Additional Needs and Disabilities in Surrey, we would like to know if there is a link between Additional Needs and Disabilities with dental hygiene/problems, and if so, what support is there?
Question Card 37:
Is there a Crisis Text Line for young people with selective mutism/non-verbal?
The User Voice and Participation Team are really looking forward to supporting ATLAS’ action and question cards. We are also looking forward for what new action and question cards 2022 will bring!
One of our ATLAS members has shared their experiences about building friendships.
how ATLAS has helped me to build my confidence to make new friends.
I have struggled with friendships since I was 3 years old, this is due to my autism, anxiety learning difficulties and sensory issues to name a few. I found it very lonely and found it hard to fit in and make the right friends and to keep healthy relationships.
Going to ATLAS has made me trust and gain more confidence for myself. I have learned to make new friends and learned how to keep them.
I now have a lot of good friends to hang out with, we sometimes break up but then we make up again if we can and want to
I can make friends independently now. I used to have support to help me make new friends and to keep them. I remember that break ups and friendships get better, they get better for everyone.
One of our ATLAS members shared their experience with bullying
I got badly bullied through secondary school, which led to all of my frustration to do lots of bad behaviour to other people and myself. The bullying would not stop because the staff were rubbish about it. The bullying made me very anxious, it made my anxiety really bad. I found it very hard to trust people even my friends because I did not want them to start bullying me as well as other people.
Bullying does improve if you tell the right people who you trust. I trust my therapist and so I told her about the bullying, she was very helpful to me. Always remember to stand up to the bullies.
The bullies picked on me because I was different and had my own struggles. What I say to the bullies is that if you don’t have anything nice to say don’t say anything at all. I also say can you please give me my own space and then I walk away from them and ignore the bullies.
Remember that you are much stronger than the bullies, don’t listen to them, they are just jealous of you and what you have. The bullies want to get a reaction so don’t give them one.
I was a baby when I was adopted. I was fostered to start with, but when I was 6 months old, I was adopted. I was a happy child and was given all the things a normal child would have been given in life. I enjoyed going to church and nursery and I felt happy in myself. I was diagnosed with autism at a young age, so from that I have always felt I was a bit different and I found it difficult to form friendships.
When I was 8 my birth mum died, and that led to my mum telling me I was adopted. At the time I did not understand, it did not make much sense to me, and I thought my mum and dad were my real parents.
Secondary school
When I got a bit older and went to secondary school, I began to realise that I came from another family. This started to impact on my mental health, and I used to imagine I was living with my mum again. I did not behave very well in school and I used to cry a lot as I did not understand why I was adopted. It caused a lot of negative feelings such as confusion, anger, upset, and anxiety. It also gave me a lot of stress, and this was on top of the other issues I was experiencing through my autism. I felt so alone and thought that I was the only member of my family to be given away.
My anxiety got bad and eventually I was given a social worker who I went to for meetings to discuss what had caused me to be adopted. They told me my mum had found it very hard to look after my sister and brother and when I came along, she could not manage.
I started to look up to see if I could find my birth mum and dad and brother and sister. I found out that my dad only stayed around for a short time, and my brother and sisters’ father was not very nice to them, so they were also adopted out but together. I had the option to see them however I chose not to see them as it caused a lot of stress to me.
Social services
Unfortunately, social services did not hold lots of information about my family, but what they had went into a life story which they started to do with me. Because of COVID, it took a bit of time.
The social worker eventually came to my house and gave me my life story so I could take time to look at it and understand. However, I still have not managed to start, as I have mixed feelings on how it is going to make me feel.
“..it does get better.”
I was told my situation when I was very young and had a lack of understanding, and I thought the childhood trauma would destroy me. It did cause me a lot of anxiety trying to figure it out but as time has gone on, I have got stronger and able to cope more with things that are thrown my way. I have begun to feel better about myself and wanted to share with other people it does get better.
Families are not always about blood, its about the care and time they take to make you feel good about yourself. I am really happy I was adopted out to the family I have, I feel more special and loved, and glad they chose me.
I would, however, love to meet up with my brother and sister who are several years older than me and this is something I would like to happen.
The Learners’ Single Point of Access (L-SPA) offers help and support to children and young people within Surrey who have a problem, concern or needs about their development or progress. L-SPA offers help to anyone to the age of 25.
What the L-SPA does
L-SPA assures they will give children and young people the right support or intervention at the right time so they can help you meet your learning developmental milestones. The L-SPA provides you access to information and advice from a team of professionals from education, health and social care; aiming to answer your call within 20 seconds. The L-SPA will not replace any existing referrals to services for children. If you have existing support or help from another service, the L-SPA will support and help alongside.
How to access the L-SPA
The L-SPA is a phone service that runs from 9am to 5am, Monday to Sunday all year round except on bank holidays. You can call the L-SPA on 0300 200 1015. Alternatively, you can go to their website and fill out a form as a parent, practitioner or as a child or young person. If you are not accessing any learning services other then L-SPA, the L-SPA can help you to get support from another service.
As young people with additional needs and disabilities, we would like more information on what study support is available in Surrey for all young people with additional needs and disabilities, so that we know what options are available to us when we make decisions about our education.
Support available
Following from your Action Card, we asked the Preparing For Adulthood Team at Surrey County Council what support colleges in Surrey offer. This is what we found out!
Nescot College
Nescot College offers a wide range of expert support, from specialised help with student finance to mentoring and professional counselling for personal, social or family problems.
All the services are free and available to anyone. To get this support you will be assessed at college after talking to your tutor.
When you join Nescot you can visit their website to apply for the support that applies to you. Or you can talk to your tutor or staff at Nescot and ask how to apply, or if they can help you apply.
For more information, visit their student services webpages:
Brooklands College offers help from staff such as, progression mentor, your tutor, the counsellor, a member of the safeguarding team. They can also give you ways to help yourself or they can signpost you to services that can offer help and support. When you join the Brooklands college you can visit their website and see how to apply for the support that applies for you. Or you can talk to you tutor or staff at Brooklands and ask how to apply or if they can help you apply.
For more information, check on Brookland’s webpages on student support:
East Surrey College offers additional support that’s offered to students who have a learning difficulty or disability. If you have a statement of additional needs, a learning difficulty assessment or an EHCP, you will need to provide any of these to get support from the college. The college provide access to assistive technology for exams, dyslexia and dyscalculia and will provide or recommend strategies to enable you to make independent progress in learning. The college has specialist staff to support those with hearing or visual impairments, as well as speech and language needs. Students needing more support will often be allocated a specific Learning Support Assistant to work with them ensuring consistency throughout the college day. There is also an Autistic Spectrum Support Group every 2 weeks, where students can socialise and try out new activities.
For more information, check on East Surrey colleges webpages on support for students:
Farnborough College has dedicated additional learning support such as, learning support workers, specialist tutors and key workers. Staff at the college work to create a range of support programmes for specific learning difficulties including dyslexia, dyspraxia, and dyscalculia. The support offer can provide 1-1 support, study and assignment workshops, exam access arrangements and assistive technology and equipment support. The college also helps with language and communication needs, whether its producing speech, understanding and using language or having specific communication difficulties.
For more information, check on Farnborough’s webpages on additional learning support:
The SEND local offer aims to bring together useful information between education, health and social care within their website. You can find information, advice, guidance and a range of local service’s who provide children and young people with Special Educational Needs and Disabilities (SEND).
For more information, check on SEND Local Offer webpages on the support they offer:
Meltdown – a response to an overwhelming situation that includes signs of distress.
Shutdown – where a person may withdraw from the people and environment around them. They may need their own space and time to process.
My Meltdowns
I don’t like meltdowns because when I used to have really big, long and bad meltdowns I used to say a lot of mean things, tell lies, say horrible things to others and myself.
Meltdowns make me look like I am refusing to do something or am reluctant to do something when I’m not – I’m in a meltdown.
I used to run off and hide, but I don’t do that anymore unless it is for a fun activity where people aren’t going to get worried. I used to also climb up trees and bushes to hide from people when I was having a meltdown, or hide underneath something, but I don’t do this anymore. I now cover my face with my hands, people understand I’m not hiding to be rude, I just need some alone time.
I don’t like to make people worried.
I like to walk, jog or run-in safe areas when I am having a meltdown to feel safe – I still do this.
Recently I have been having less meltdowns than I used to, which are also smaller than they used to be. I have been having a lot of shutdowns recently.
My Shutdowns
I have had a lot of shutdowns in the evenings since I finished college for summer holidays. In the last 7 weeks I have had a shutdown almost everyday.
During the summer holidays I have been going to a lot of clubs, and I have been having a lot of 10 to 40 minutes shutdowns at the clubs that I have been attending in the mornings and the afternoons. Sometimes I feel sorry for the staff who try to help me, but I also worry that they may call someone over and make it an incident.
A lot of people ask me if I am okay when I am having a shutdown, but I am not always able to answer, especially when I am really anxious. There have been a lot of transitions lately that are really busy and loud, which have not helped my anxiety. Some mornings I am too anxious to go into clubs and the staff I have good relationships with have to help me enter the site.
Some days I cry a lot when I am really anxious. People might worry because I might not seem like myself and then ask me a lot of questions at once about how I am and how I have been. Sometimes it can be overwhelming to talk about these things; sometimes I’m not ready to talk about it. When this happens, they might get into my personal space. I worry if people who don’t get tested regularly for Covid-19, get into my personal space.
Sometimes the behaviours of other children and young people at clubs and activities can cause me to be really anxious. Especially bad or violent behaviour.
When I am tired, I find things harder to do and possibly more overwhelming. This can make me cry and I don’t always immediately know what it is that has led to the problem.
How I manage overwhelming situations
Some of the ways I notice that I am becoming overwhelmed is when:
There are loud noises
There is a difficult situation
I see someone breaking the law or doing something dangerous
I get too hot
I am stressed
Some of the ways I look after myself when I am overwhelmed:
We found sharing our self-care tips and tricks with each other really helpful, especially during Covid. During the pandemic it has been even more important to think about how we are spending our time, as we’ve not been able to do our everyday ‘normal’ stuff, like socialising.
We hope that others find our thoughts and discussions around maintaining your mental health and wellbeing helpful!
The Importance of Self-Care
It has and continues to be important that you keep yourself active (however YOU define active), your mind active, and do things that you enjoy whilst staying safe. This can include any hobbies that you have like reading, drawing, listening to or making music, going out for a walk: anything at all that you think will help you.
It is also important to make sure that you are eating and drinking enough water every day as that has a massive benefit to improving your mental health and wellbeing.
Tips and Tricks
We’re all different for what we find helpful. Here are some of the activities ATLAS members use for self-care:
Keep in touch with your friends because you don’t do much [during a pandemic].
Call someone everyday – video call not just phone call or texting. Because if I don’t socialise for a while, I will forget how to socialise.
Meditation and listening to music.
Click and collect libraries.
Making time for your hobbies
Weighted blankets help a lot. Weight toys, weighted lap pad and weighted jacket.
Baths and Showering.
I have been trying to explore working with my senses. A lot of time with myself, music really helps because it is hard not hearing people’s voices. Without sound I will get tinnitus or hallucinate.
White noises are also really good, especially with Autism I find big changes in volume different, so having noise all the time helps when people call me.
Keeping bin by the bed.
Using a bed desk if you can’t get out of bed so you are changing your work environment and home environment.
I try and make sure I have a main event every day. I think it is an ADHD thing – I can’t do something when I am waiting for something planned.
Routines!
Routines
We find that routines help to structure out our day-to-day life and activities. Here are some of the areas we use routines to help us with:
Eat healthy meals.
Meal plans.
Have a timetable.
Have a sleep routine.
Similar sleep / wake up times.
Light exercise.
Having alarms / reminders.
Post-it notes.
Put reminders on phone.
Write in a diary.
Try and have different places in the house for different activities.
Everyday, do something that you enjoy.
Have structure in school / work.
Have a time in the day where you step away from screens.
Make exercise fun – put on music and dance or play a game that includes exercise like a virtual reality game (e.g. Wii Fit).
Writing plans.
Listen to music.
We find that routines are really helpful; they give us the information on what we want or need to be doing and when, as well as helping us to manage our time.
Importantly, routines help us to be more independent, reduce anxiety, and some of us have found it has also helped us build more confidence in ourselves!
Self-Care During Self-Care!
When developing routines, we feel it is important that you:
Don’t pressure yourself.
Take little breaks.
Tell people close to you what you need, or how you feel.
Do you have any tips and tricks you would like to share? Please comment below!
This film is about non-verbal autism and is based on the book The Reason I Jump written by Naoki Higashida when he was 13 years old. Naoki is now 28 years old and will be 29 in exactly 28 days. Naoki is a non-verbal autistic person from Japan. The book was published in Japan in 2007. The English translation was published in 2013 by Keiko Yoshida and her husband, English author David Mitchell who have a son who is autistic and non-verbal. Keiko and David were very passionate about this book because they felt this is the only book which helped them to understand their son. Naoki’s book is invaluable to help understand severely autistic children and young people because it is the only book about autism written by an someone who is autistic and non-verbal.
This film is part documentary, part dramatisation and has an actor playing Naoki Higashida when he was a boy. The film shows Naoki walking along the beach and countryside explaining lots of feelings, emotions and sensory input from his surroundings. While this is being shown there is a narrator speaking the words of Naoki from his book, where he expresses his thoughts and feelings around his autism and non-verbal autism in general. Naoki’s account being read out in the film is incredibly powerful, extremely insightful and very thought-provoking. In my opinion the most powerful quote of Noaki’s is, “To live my life as a human being there is nothing more important than being able to express myself”.
Screenshot from the film
The idea of turning the book in to a film came from the parents of a teenager I’ll mention later on. His parents Stevie Lee and Jeremy Dear, were the producers of the film. They had read the book and it had transformed their understanding of their son. Without the parents of servery autistic children and adults this film would of not been made. The documentary part shows non-verbal autistic people from all over the world. From England they film Joss Dear a teenager who is severely autistic and can speak but speaks mainly by one word responses or repeating worlds from a long time ago that people have said, mainly his parents. Joss is very sensory, he enjoys blowing bubbles, bouncing on his trampoline and swinging very high on a swing. Joss is unable to explain why he does what he does and like what he likes. He just knows what he likes and people can see he likes it because he is showing experiences of pure joy. One of the reasons that makes the film so immersive and fascinating, is when the film shows autistic people from around the world doing what they enjoy. The words from Naoki that are in his book were said by the voice of the book Jordan O’Donegan. Where Naoki’s insight is invaluable because he describes the reason autistic people do what they do. His words describe Joss perfectly. When he is jumping, Naoki’s words are voiced over, while the footage of Joss being shown is a very good way of showing what incredible insight Naoki has given Joss’ parents and everyone else.
I really enjoyed the film and it taught me a lot, even as an autistic young person myself, about non-verbal autism, because I am fully verbal and only know a few people who are non-verbal. The cinematography is very good, shows some stunning views around the world and captures all of the people videoed in the film exactly. I feel one of the most important parts for people to take away from the film is about Naoki and two autistic friends from America who are non-verbal. These three young people have non-verbal autism however they are all very articulate and all use the letter board to communicate. They all have a very high level of understanding of themselves and the world around them. This makes the powerful point that non-verbal autism is not talked about much and still very much misunderstood. It is still very much the belief, that non-verbal servery autistic people with have a limited understanding and severe learning difficulties, which is not always the case. As these three in individuals show very powerfully. Another part I really liked was when Joss was looking over a fence at a mental green box with lots of cables in. He wanted to climb in but his dad told him not to because of course it’s too dangerous to climb in. It is incredible that Joss can hear the green box, without seeing it, from quite a distance. Listening and finding the green boxes has become a fascination for Joss and he can sit with his head to one of them for a long time.
A screenshot from the film.
I would recommend anyone with an interest in autism or additional needs to watch this film. It is a very unique film which is very thought provoking to all that see it. I would give this film a 5 out of 5 star rating because the director Jerry Rothwell did exactly what he set out to do. “As a film maker”, he said, that making a film about Naoki’s book would “offer a great opportunity to use the full potential of cinema to evoke intense sensory worlds in which meaning is made through sounds, pictures and associations as well as words.” He said by creating this film, “My hope is that the reason I Jump can encourage an audience into thinking about autism from the inside, recognising other ways of seeing the world, both beautiful and disorientating.” He also said, “I hope the film takes audiences on a journey through different experiences of autism, leaving a strong sense of how the world needs to change to be more inclusive.”
As seeing the film myself, I would say that’s definitely what I got out of the film and I think many others will too. This film will probably send you on a roller coaster of emotions from felling happy, stunned, sad, surprised and cross. At times the film is funny, sad, enlightening, inspiring, powerful and most of all, gives you a small insight of what it can be like for people who are autistic and nonverbal.
Anxiety makes you more anxious and nervous. It is harder for you to talk about your feelings and emotions. Sometimes it is hard to talk about your thoughts and what you are thinking about.
When you’re anxious it is really hard to talk to people because you don’t know who to trust. With anxiety, I find it really hard to trust people.
Things that cause me anxiety
There are a lot of things that cause me anxiety. For example:
Meeting new people and seeing a new place.
Emergency services
Because hospitals and the emergency services are scary.
Emergency vehicles
For example, police, ambulance, fire engine, flashing lights.
Loud noises, alarms, vehicles, fireworks, thunder, heavy rain, wind, screaming and shouting.
Professionals knowing about my life and personal information and not knowing who will be told & who they may tell.
Changes.
Cancelling or changing appointments with little notice or no notice.
Changing schools.
Different primary and secondary school.
too many changes happening at once.
home schooling.
Moving to college and having to make new friends.
Negative things on social media.
The news.
particularly about covid.
Covid in general because you can’t see people and places.
The Dark.
I can’t see what is happening around me.
I can’t see what people are doing.
Fights and arguments because you don’t know what’s happening.
Small tight spaces: I feel stuck and scared.
People that are hurt or sad.
Sad knowing that my friends have anxiety and bad mental health.
My friends seeing me struggling.
Being adopted.
Not understanding the whole process.
Not meeting family members that I don’t know.
Scary times from the past: being threatened to be kidnapped as a kid.
Being touched
You don’t know if they’re going to hurt you or not.
Intrusive thoughts.
They can be hard to ignore.
Not understanding what my disabilities mean: Autistic Spectrum Disorder (ASD), Learning Difficulties, Sensory Processing Disorder (SPD), Anxiety, Sensory Issues.
Because I have SPD it takes me more time to process and understand information.
My meltdowns and shut-downs.
Sometimes I am non-verbal.
Managing anxiety
There are many coping strategies you can use to help with anxiety. I prefer some strategies to others. Ones that I like are:
Hugs (: This is a big one!
Hugs are great because they’re very soothing and relaxing.
I like the feeling of touch; it calms me down quite quickly.
I mainly like hugs from White Lodge staff.
Fidget Toys. Ones that I like include:
Stretchy bands.
When you stretch the bands, they help to relieve frustration.
Chew toys.
They help relieve the anger inside my mouth.
Exercise.
Walking and yoga.
Walking is really calming, and yoga really soothes you and makes you want to go to sleep.
The fresh air makes you happy.
Talking to people who I trust.
For example, staff at White Lodge.
Soft toys.
They’re nice to cuddle.
Adrenaline rush.
For example, from a roller coaster!
Baths.
You can have a bath bomb and a candle in there, put some classical music on, it’s really nice!
Washing products that smell really nice also make you smell great and clean.
Colouring-in.
Colouring in between the lines makes you feel really relaxed.
Cooking.
Mixing ingredients, for example, is very calming.
Animals.
My dog really helps me! And my fish!
Make-up or face paint
I find putting these on a really nice sensory experience.
It is also very creative and a good way to express yourself.
Medication
I have a chewing gum with hemp in it that really helps me.
Lozenges and calming sweets can also be good.
Crying.
When I am in a shut-down, I find crying helps me feel better.
Going to a library.
It is quiet and peaceful. It is nice to go in.
Looking through the books, choosing one and then reading is a good way to distract yourself.
When I am in a bad mood, but not in a meltdown, I often ask to go to the library.
When you are anxious it can be hard to make decisions. So, it can also be difficult to use coping strategies when you are anxious because you don’t know which one to use and which one will help you the most. Sometimes when you are anxious you can also forget about the strategies!
Using coping strategies
I find it easier to use coping strategies when I have a meltdown when people tell me to use them. But when I have a shutdown, I find it difficult. When I need to use my coping strategies, I remember them by:
Using lists.
I have two: an outdoor and an indoor one.
My mum, or the people around me, remind me.
When I am having a shutdown I like it when people check-in with me and ask what they can do to help me. I find that helpful. It is helpful when people try and ask what is wrong. When I am having a shut-down I find people giving me hugs helpful, but please ask me permission before you do!
I would like it if the professionals that work me had a better understanding of shutdowns and what I need when it happens.
If emergency services have to work with me when I am anxious, having a meltdown or a shutdown, I would like them to:
Not talk over each other.
It’s hard to understand what they are all saying.
Not ask so many questions.
They try to rush you to answer.
To communicate using sign language (BSL/Makaton) or flash/single cards.
When I am in a shutdown I find it easier to use a different way of communicating.
Understand that they are not someone that I trust to share my personal feelings with.
I know that they are not all trained medical professionals, for example the police.
Use less force and be more gentle if they need to touch me.
Give me more warning if they need to touch me, for example use a countdown.
Recently in ATLAS, members were discussing their experiences with dentists and realised that many of the members had dental and/or oral health problems.
Members raised a Question Card for the User Voice and Participation Team staff to find out whether there was a connection between dental and oral health problems with additional needs and disabilities. If so, young people wanted to know what support there was for them and how to access it in Surrey!
As young people with Additional Needs and Disabilities in Surrey, we would like to know if there is a link between Additional Needs and Disabilities with dental hygiene/problems, and if so, what support is there?
Question Card from ATLAS members
The link between dental and oral health and learning disabilities
Good oral health is an important part in people’s general health and quality of life. There is evidence to show that people with additional needs and disabilities have poorer oral health and more problems in accessing dental services than people in the general population.
However, national, and international research, consistently shows that people with learning disabilities have:
higher levels of gum disease
greater gingival inflammation
higher numbers of missing teeth
increased rates of tooth lessness
higher plaque levels
greater unmet oral health needs
poorer access to dental services and less preventative dentistry
People with learning disabilities may often be unaware of dental problems and may be reliant on their carers/paid supporters for oral care and initiating dental visits. There may also be a need for additional help with their oral care and support to get good dental treatment because of difficulties with mental and physical health.
The website includes information on who could be entitled to free dental care and a list of useful links for young people and carers. You can also find information on your rights and the law around accessibility.
Conclusion
ATLAS will be reviewing this information soon! We will update this blog with their response!
If you would like to join ATLAS, find out more on our ‘Get Involved!‘ page.
It is well noted through observation and research that there is more gender diversity in neurodiverse people than neurotypical people. As gender and sexuality are social constructs, there is speculation that this relationship is due to the fact that being neurodiverse means you are less likely to adhere to cultural and social norms.
You may be wondering what all these terms mean:
Neurodiverse/Neurodiversity/Neurodivergent – variation in in the human brain. This term is used by people to express that their brains are wired differently due to having neurological conditions and/or disorders: ADHD Autism, Dyspraxia, Dyslexia, etc.
Neurotypical – this is a relatively new term that is used to describe people whose brain develops and functions in ways that are considered ‘normal’. It is the opposite of Neurodivergent.
Gender Diversity – is a measure of how much people’s gender differs from cultural or social norms due to their sex at birth.
Sexuality – is all about how someone identifies themselves in relation to the gender or genders that they are attracted to.
Social Construct – something that only exists as a result of humans agreeing that it exists.
Cultural and Social Norms – rules or expectations based on the shared beliefs of different groups of people that guide behaviour and thoughts.
Talking about experiences and difficulties of the LGBT+ community is extremely important to ATLAS members. This is not only because ATLAS want to be strong allies and raise the voices of minorities, but because a number of members are also part of the LGBT+ community themselves.
“When somebody refers to me as female, I think ‘oooh not really but close enough’. It took me a long time to realise that I don’t experience femininity and being female in the same way [as the people around me] because I am not really female.”
ATLAS member
Image by Sharon McCutcheon
Autism and Gender
ATLAS members reflected on how they weren’t told about the relationship between Autism and gender diversity when they were diagnosed:
“When you are autistic you experience gender in a very different way … no one mentioned this to me when I was diagnosed”
ATLAS member
I am nonbinary, I don’t talk about it much because it doesn’t come up that much. It’s very common with Autism but no one told me!
ATLAS member
How masking impacts self-discovery
Masking is a survival technique that is used by people with Autism to hide behaviours that may not be accepted by the people around them. This is often achieved by learning to display neurotypical behaviours. Ultimately, masking results in having to hide the true self to be protected from negative consequences.
“Masking is a trauma response and trauma screws with everything. Trauma affects people with autism a lot more. I don’t know where the mask ends and where I begin.”
ATLAS member
ATLAS members raised that as a result of masking, it can be difficult to work out who they are:
“When I was younger I would take behaviours I would see and mask using them. A lot of people I was around were heteronormative. It makes it hard for me to understand, I can’t always get my head around what I am or what I like because I have masked for so long.
ATLAS member
As a result some members felt unable identify with labels, which could help them find support from peers and communities:
I went to a university LGBT+ society event and someone came up to me and asked: Well what are you? Why are you here? I don’t know what I am because I find it really hard to process.
ATLAS Member
Labels
“Some people find labels helpful and some people don’t.”
ATLAS member
“For me it was empowering to have my labels, it helps me to break everything down to feel like I have control. But labels are limited in how they explain me. Something I found hard to understand was ‘comphet’: How much is me wanting to be loved? How much is me wanting men to validate me? and how much of it is attraction?”
ATLAS member
Comphet stands for compulsory heterosexuality. This is where heterosexuality is assumed and enforced by society.
“On a call I do at uni they put their pronouns in their Zoom names.”
ATLAS member
ATLAS members and staff loved this idea: members and staff are now invited to put their pronouns in their Zoom names if they want to!
Image by Sharon McCutcheon
Family Stigma
“People in my family are really against it [LGBT+].”
ATLAS member
Whilst family relationships can be extremely important for the wellbeing of children, young people and young adults, unfortunately stigma can lead to bullying, rejection and internalised stigma.
“My dad was very girls belong in the kitchen, seen and not heard. He wanted me to be his little girl and when I didn’t he came to disown me for it. It makes it hard for me to accept who I am. I have never felt comfortable with who I am or how I am. So when I hear people who are able to find themselves, I just don’t understand how they can make those decisions. I was told I couldn’t be gay or bisexual because I was just masking.”
ATLAS member
“Fortunately, I know how some people have a good accepting family, really only my mum accepts. My dad and my sisters think I am going through some sort of phase and that I’m probably stupid.”
ATLAS member
Final thoughts
“I think it is interesting how people have such different experiences.”
ATLAS member
Neurodiverse people, people with Autism, people with disabilities are just as different and individual as neurotypical people, people without an additional need or disability. Talk to us, listen to our experiences and ideas: we are experts in our perspective and have a lot to say!
To make sure that the voices of children, young people and young adults with additional needs and disabilities in the LGBT+ community are heard ATLAS will be starting drop-in sessions to provide a safe space and a platform for voices to be raised.
At the age of 22 my life changed. I got what most would describe as a label, but I don’t.
If I did describe it as a label, I wear mine with pride.
I dislike the term ‘disability’ as it makes me feel like I’m lacking something or I’m less able than a ‘normal’ functioning person, so I call them my difficulties and additional needs. Because with hard work, help and support they can be over-come, and everyone is different any way.
Dr. Seuss pictured with some of his famous characters.
“Why fit in when you were born to stand out”
Dr. Seuss
I have Autism and I’m never afraid to admit it as it makes me who I am, so does my difficult past. No one should ever make you feel less of a person because you see the world differently or have difficulties fitting in.
One of my favourite quotes is “Another person’s craziness is another person’s reality” said by my favourite directors Tim Burton. This is my favourite quote because it’s so true and relatable to me. I now have this quote tattooed on me as a constant reminder that it’s ok to be who you are, whether you fit in or not.
Tim Burton pictured with some of his famous characters.
I have made it a passion of mine to help and teach others by sharing my past and present life experiences and I take pride in where I have come from and where I’m going. My Autism has its challenges that some people don’t understand but I’m always working hard to help change their views and the stigmatism around additional needs and disabilities.
Over the years I have seen more acceptance of Autism and the challenges we face but there still is a lot of misunderstanding and judgement, its something I’m willing to help change and I will always challenge things as there is always more to be done.
Michael Fred Phelps is famous throughout the world for his legendary abilities whilst swimming. Phelps is, by far, the most successful Olympian of all time with 28 Olympic medals of which 23 are Gold. Phelps also has several world records relating to swimming and is the fastest human being alive in the water. Phelps has achieved this success for many reasons, not least being his own hard work and dedication, as well as having a body especially suited for high water mobility. But another factor that may have allowed Phelps to reach such success, much to the surprise of many, may be his ADHD. Phelps was diagnosed with the condition when he was a child, and some believe that this diagnosis played a role in making him such a world class athlete. In examining how ADHD has affected Phelps, we may learn to see Disability in a rather different light.
“I simply couldn’t sit still, because it was difficult for me to focus on one thing at a time”
– Michael Phelps, from his book Beneath the Surface
ADHD, or Attention Deficit Hyperactivity Disorder, is a condition that causes many behaviours that are unusual in the rest of the population. Commonly observed behaviours include restlessness, short attention span, and difficulty focusing. Many people consider ADHD to be purely negative, but many people with the condition themselves see it quite differently. For instance, ADDA, an self-advocacy group run by people with the condition, argue that ADHD is worthy of being celebrated. Whilst living with ADHD may present challenges, ADDA argues that the condition can in fact have its advantages and should be better thought of as simply a different way of having a mind. This might sound strange at first, but in Michael Phelps there may be an incredible example of this idea in action.
Historically, ADHD was understood as an inability to focus but more modern research suggests that it may in fact be a lack of control on what the brain focuses on. This is why ADHD people often exhibit a trait called ‘Hyperfocus’, where they focus intensely and singly on one thing, often for hours at a time. The theory goes that ADHD people often have a far stronger ability to focus than so called ‘Neurotypicals’ (those without ADHD) do. The problems come when an ADHD person has to focus on one thing when around them are ten or twenty distractions to drag their attention from. Most people have the ability to forcefully draw themselves back to the object of their focus and resist distractions, but without this many ADHD people struggle to stick to one thing long enough to make meaningful progress. With that said, picture child Michael Phelps in a swimming pool. Whilst in a classroom he might struggle to sit and do his work because of all the distractions, in the pool, with nothing to focus on but the water, his mind can intensely focus for hours on end. This allows Phelps to practice far longer and maintain focus far longer than his neurotypical coevals. Becoming a world star athlete requires spending many hours of each day practicing, but it also requires being able to remain attentive to technique even after hours of practice. Its possible that it is because and not in spite of, Phelps’ Disability that he has been able to take on the entire world in his chosen sport, and definitively triumph.
Michael Phelps Video: ADHD and What I would tell my Younger Self
Video Description: Michael Phelps talks to the camera about what he would tell his younger self and what it was like growing up with ADHD. Video has closed captions.
About Theo!
“Hi! My name’s Theo Greiner and I work in the Web and Digital Services Team at Surrey County Council. I’m also on the Autism spectrum and use that experience to write articles on accessibility on behalf of the Council to get people thinking about Accessibility and Disability. I write in hopes of shifting people’s ideas about Disability towards ones that treat Disabled people with the respect and agency they deserve. I hope you enjoy them.”
Chris was born in Southampton in 1961. His big interest in wildlife seemed to form before he was even able to speak. His parents say that he liked to crawl across their lawn looking for ladybirds and fish for tadpoles and mosquito larvae in an old baby’s bath set in the corner of the garden.
When he discovered a song thrushes’ nest just before his 12th birthday his interest in birds first began to grow. The Observer’s book of Birds Eggs became his Bible and Chris became a young egg thief. In 1974 he met a teacher at his school, John Buckley, who immediately redirected young Chris’ interest in egg collecting towards scientific examination instead.
Chris found nests, counted eggs and chicks and made maps of all their locations and within a couple of years he started his first proper scientific study – The Population and Breeding Density of Kestrels in the Lower Itchen Valley. This was written up in his last year at secondary school and he won the Prince Philip Zoology Prize a couple of years later. A bright young scientist and nerd in training he studied Kestrels, Shrews and Badgers in his teens and undergraduate days at the Zoology department of Southampton University.
As a young adult and postgraduate, he began taking still photographs and trained as a wildlife film cameraman. The photography continues with exhibitions and invitations to judge prestigious competitions, but the camerawork gave way to presenting. Chris began with the award winning ’Really Wild Show’ in 1986 and has been working ever since.
In his late 30s Chris suffered with Meniere’s disease which is a disorder of the inner ear that is described as having episodes of feeling like the world is spinning, ringing in the ears and hearing loss. In 2003, at the age of 42, he began seeing a therapist after the death of his dog. As his work with the therapist concluded in 2005, Packham was diagnosed with Asperger syndrome, aged 44.
“For all autistic people it mustn’t any longer be about what we can’t do, it’s got to be about what we can do”
On 17 October 2017 Chris Packham released a documentary on BBC 2 about his life growing up and his Asperger’s, this program is called Asperger’s and me and can still be watched on BBC iPlayer. After receiving so many responses to the program he replied back to his fans and the messages he received with a letter that can be found and read on his website https://www.chrispackham.co.uk/news/aspergers-and-me-thank-you
“And that’s the message that I wanted to land to parents, friends, colleagues and a large number of isolated, unhappy, confused children, teenagers and adults. We don’t need a cure, there is nothing wrong with us – we are different. And that difference has enormous biological and social importance.”
Spina Bifida is a birth defect of the spinal cord; this is what Aaron has and is why he is on a wheelchair and has very limited use of his legs.
Aaron ‘Wheelz’ Fotheringham has never let being on a wheelchair limit what he wants to do. When he was a small boy, he did anything anyone else his age could do, he just had to figure out how to make it work for him.
“When you say you are ‘in’ a wheelchair it’s like saying that you are confined to it. I’m ‘on’ my wheelchair, I ride it like a skater ‘on’ his skateboard.”
When he first ever received his first walker, he was off and running. Following on from the walker came crutches, which he got the hang of quickly. He would put on a Superman cape and blast down the hall on crutches believing, as any other 4-year-old, that he could fly. At age 8 Aaron go his first wheelchair which change his life for the better and opened new adventures for Aaron.
The age of 8 was when Aaron started riding at skateparks. One of his older brothers Brian is a BMXer. Before Aaron started having a go, he had been going to the park with Brian and their dad for weeks, but Aaron would just watch. Like any other child Aaron found the first time scary and he fell hard, but he was never one to give up just because it wasn’t easy. So, he tried again and from then on, he was hooked.
Aaron wants to change the world’s view of people on wheelchairs and to help everyone see their own challenges in a new way. You do not have to be on a wheelchair or handicapped to be inspired by what he is able to do and has achieved.
“I was able to go further than I could’ve ever dreamed of – all because of my wheelchair”
Over the years, Aaron has challenged himself to discover even more difficult stunts. In 2005, he achieved a mid-air 180-degree turn. On July 13th, 2006, he landed the first wheelchair backflip. Four years later August 26, 2010 he landed the first ever double backflip. As if this isn’t enough, on February 9th, 2011, he landed his very first front flip in New Zealand, and on August 25, 2012, he stunned Brazilians by jumping and successfully landing a 50-ft gap off the Mega Ramp in his chair. He is a 4-time winner of the Wheelchair Motocross (WCMX) World Championships and has also performed the first Wheelchair Flair/backflip 180, which he posted online.
After posting that first ever backflip on the Internet, life has changed for Aaron; he has travelled globally, both performing and speaking. He has attended summer camps for disabled children as a coach/mentor, and he has been featured in magazines, newspapers, and sports television. Aaron enjoys showing young kids with disabilities that a wheelchair can be a tool, not a restriction. He loves helping younger children learn how to handle their chairs in new and different ways and teaching them a trick or two. Someday he hopes to design and build the most wicked chair in the world.
Aaron “Wheelz” Fotheringham – The Story
Video description:
A youtube video documentary about Aaron’s life and rise to fame. There are a sequence of clips of Aaron talking to the camera, learning and landing a number of different wheel chair stunts, attending movie premiere’s and enjoying his life.
Video Transcript:
“I wanna be be cool! I wanna be cool!” A few people can be heard cheering and then the sound of the wheelchair crashing into the ramp. “Dude I’m alive”, people cheer. More crashing sounds.
“I’m Aaron Fotheringham, most people call me Wheelz. I was born with Spina Bifida. The doctors didn’t think I’d really be independent at all or be able to sit up or do anything on my own: need to be assisted my whole life.
“But I didn’t let that stop me from keeping up. When all my friends would be riding their bikes around, I would hop on my wheelchair and chase them all around the streets.”
“Since those days my life has changed so much. Somehow I have been able to travel the world from country to country. I’ve been able to meet my idols and people who inspire me, perform in live shows in front of thousands of people and basically go further than I ever could have dreamed, all because of my wheelchair”. People cheering.
“Um, ok, well I was adopted when I was born to an awesome family in Los Vegas. They’re not my biological parents, but pretty much they’re everything, you know, they took care of me since birth and given me everything I have. Had to be a big trial on them and a big risk ’cause adopting a kid with Spina Bifida is, you know, like buying a car that’s got a lot of problems, a lot of work. Just also having to go in, either having a kidney problem or problem with my spine.”
“Well when I first started going to school, and like, they would always ask if I wanted to be put into adaptive PE with other kids on wheelchairs and I was always against that, because I though well I’m just like every other kid, I’m just on a wheelchair. So I would always fight and make them put me in regular PE. The coaches were always pumped because I would always be there and just want to do whatever the other kids were doing. So I think that was an important part was just having, you know, no one treat me any different. And my parents would always, if I would ask for help or something, they would say: your legs aren’t in pain at all, you can do it yourself. So they would just treat me like they would treat any of my other brothers.”
“You know, I think your disability is mostly in your head. You’re only as disabled as you feel. Just always having fun with it and never seeing it as a true disability. Like I don’t wake up in the morning and think: oh crap I’ve got to ride a wheelchair today. It’s just, like you get up and put your shoes on, I’m hopping onto an awesome wheelchair.”
“It’s pretty sweet to be able to help people look at their wheelchair as something just besides a medical device and it can actually be something really fun. Like, honestly there’s just wheels stuck to my butt, how can that not be fun?”
“We’re just here at one of the nitro circuit premiere’s getting ready to see the movie for the first time. Never been on the red carpet before, I feel like I should wipe my wheels before I got on the red carpet.”
Singing.
“Wheelz is fun, he’s really cool. He’s got the most dry sense of humour you could ever imagine. First time I saw him, he hit the ground and he’s laying there like: I’ll never walk again! and I was like so, I didn’t know whether to laugh, I didn’t know. He’s just always being awesome, I can’t be awesome all the time, I can’t even walk but that’s kinda what we got in common so we’re good.”
Background music and cheering.
“Not too long ago I went to my first x games and I’d watch Travis and I saw him up close for the first time and I was star struck. And I waved at him and he waved back at me. Saw Travis’s double back flip and I was like I wanna do a double back. And then a couple of years later they call me up and I’m doing shows with them and then I’m landing a double back flip. It’s just, you know, it’s crazy, I’m scarred to dream too insane because everything seems to be coming true.”
Background music.
“Those are always the best moments of my life.”
Cheering.
Dude, my teeth are missing again! You lost your teeth? Again! I had so much fun knocking my teeth out the first time that I can’t help it!.
Did you know that Blind people sometimes need subtitles on videos?
Strange and nonsensical as it may seem, like a ‘how to speak French’ book being translated into French, this is a very real and very necessary accessibility requirement. This is because Blind users who watch online videos need any written words on screen, such as title cards or diagrams, to be transcribed so that their screen readers can read them as a transcript. Once explained this seems pretty clear, but why would a sighted person ever guess that this was a requirement? Not knowing this, someone writing subtitles might assume that just because the text was already on screen there is no need to write it out again in the subtitles. This is one of the many challenges to overcome when making online spaces accessible: not all accessibility requirements make sense to an able-bodied reader on first blush.
Another example is tables. If a table is laid out with labelled columns and labelled rows, the top corner of a table is often left blank. However, this is also a problem because often a screenreader reads across the rows one at a time, and the Blind person is creating a mental picture of where the different pieces go. If there is a section left blank, it can cause the columns to become out of step with the rows making the entire table impossible for the Blind person to properly parse. The solution to this is to mark the blank space with some alt text that the sighted user never needs to see but which allows a screen reader user to understand how the columns and rows fit together. Once again, a relatively simple fix that nevertheless may not have seemed necessary to many sighted people.
There are many other such examples, of things that may be vitally important for some Disabled users but are unfortunately often completely mystifying for able bodied content producers to understand. To face this problem, the key weapons in our arsenal have to be curiosity and open mindedness. Being curious about the reasons behind accessibility guidelines can help us gain a greater understanding of them. Meanwhile, being open minded to new information, even if it may seem strange or nonsensical to us at first, can allow us to avoid the pitfalls that can keep our online spaces from being accessible to all.
About Theo!
“Hi! My name’s Theo Greiner and I work in the Web and Digital Services Team at Surrey County Council. I’m also on the Autism spectrum and use that experience to write articles on accessibility on behalf of the Council to get people thinking about Accessibility and Disability. I write in hopes of shifting people’s ideas about Disability towards ones that treat Disabled people with the respect and agency they deserve. I hope you enjoy them.”
You may have heard of Sia’s new movie, Music, which was criticised before release for casting a non-autistic actor as a mostly non-verbal, autistic main character.
In the midst of Sia lashing out at criticism on social media, ATLAS members talked about how the casting of Music and the release trailer made them feel.
Famous tweet exchange during backlash around the casting of Sia’s movie, Music.
Many of the young people were disappointed that a potential opportunity for representation of girls with autism was overwritten by ableism:
“It feels as if someone who has not experienced being autistic is mimicking and taking the mick out of struggles we have and there are so many potential actors and actresses which would have been happy to be casted in the movie. There is the idea that Sia was not able to put the right environment for an autistic actress to function when filming but if it’s not working for them and the movie is about autism and disability inclusion and awareness then you should change the environment. I feel it is especially difficult to watch the trailer as a girl with autism seeing a neuro typical girl attempt to portray autism in girls, which unfortunately is a very underrepresented thing in the media and is often not acknowledged as much as autism in boys. I feel that the opportunity to bring about awareness for autism in girls has been crushed by such a horrifically degrading movie of a neuro typical attempting to show you what it’s like to live as an autistic person when they have had no actual experience of it.”
Other young people were torn, because they felt that additional needs and disabilities have been successfully portrayed by actors without additional needs and disabilities elsewhere:
“I think it is difficult. Ideally an autistic character should be played by an autistic actor as this will really help raise awareness, and potentially open up these opportunities to people with additional needs. However, I also think it is not a negative thing a non-autistic actor playing this role, as long as the portrayal is accurate and realistic.
A good example is the American TV show ‘The Good Doctor’. A non autistic actor (Freddie Highmore) plays an autistic savant character in the show, and I know his portrayal of the character has received a lot of praise and has also helped to raise awareness, as well as showing a powerful autistic role model through television, despite the fact that the actor does not have autism.”
Dr. Shaun Murphy from ‘The Good Doctor’
Overall, ATLAS members did not feel that the casting of ‘Music’ was positive.
“Autistic actors are already marginalised and it’s harder for them to get roles. Especially when that autistic character has already been written by non-autistic people, I think it’s disrespectful to not use an autistic actor. It’s unhelpful, and often inaccurate.”
“It’s something that affects me daily and they get to take off their ‘autism mask’ and carry on normally, plus they profit from all of this. It also would be far more accurate with an autistic actor who actually knows the ins and outs of being autistic.”
The portrayal of autism in the media
Sadly, this film does not stand in isolation. The majority of ATLAS members reported that they felt the portrayal of autism in the media was either ‘not very good’ or ‘really terrible’.
There were mixed views around having non-speaking autistic characters in films, however there was a largely positive response to having female characters with autism.
Survey results from Microsoft Forms on the portrayal of Autism in the media.
“I think it’s so important to have the diversity of autism shown in the media. Too many people think it’s straight white boys lining up cars but it’s so much more than that.”
“The way autism is currently represented in the media is not very diverse. Usually cishet white men who like maths. Or it’s demonised. It’s very often talked about from the perspective of ‘autism parents’ rather than autistic people.”
Film is a powerful medium. When used correctly, it can empower and educate people. When somebody sees a film focused on autism, that may be their first exposure to the idea of autism or to an autistic person. This provides an opportunity for people to talk about and approach autism in better ways. Unfortunately, if the film misrepresents people with autism, then the ideas taken from a film could lead to autistic people being viewed and treated in negative ways.
“It could be great it has amazing potential to raise awareness to the struggles of autistic people by using our own experiences and using us for the information rather than charities and companies like Autism Speaks which believe that autism needs a cure. So if the information that the film and the character was based off of was found through talking to autistic people and if they cast an autistic person then the film would have amazing potential to widen people’s knowledge of the autism spectrum and and make the representation of autism in the media more positive.”
Disability is fluid
Clem Bastow beautifully describes Maddie Ziegler’s performance in her Guardian Article:
“there are elements of truth to Ziegler’s performance, but even a stopped clock gives the right time twice a day”
two people with the same condition can have completely different experiences of it
the level of disability someone might experience can vary from day to day.
When people don’t understand the nature of fluidity in disability, it leads to stereotyping and contributes to how disabling society is. People with additional needs and disabilities are actively excluded based on assumptions and passively through it being ignored.
The most important thing to do is listen.
You don’t need to understand how an additional need or disability affects someone to accept it. To believe the individual. To accommodate.
“They’ll decide what your ability is, and then you will be prescribed to that and then you’re not encouraged to go beyond that.”
I’m going to crush you with my love
Perhaps one of the most dangerous misunderstandings the film portrays is the use of prone restraint. Restraint should only be used if there is an immediate danger to that individual or others. When that danger has passed, restraint should stop.
ATLAS recently talked about the use of restraint in schools for managing the behaviour of young people with additional needs and disabilities:
“Children and young people shouldn’t be in a position where they are treated like criminals.”
“I believe that restraint should not be used, ever, unless a person is presenting an imminent risk to themselves or someone else. As in, they are not able to stop themselves. Honestly, not even then, usually you can use de-escalation techniques.”
Participation, participation, participation
The film Music being released at the same time as ATLAS is starting to look towards Autism Awareness Week (29th March to 4th April 2021) highlights to me the sheer importance of participation and listening to the voices of people who are experts in their own experience!
How different these events could have been if the voices shared around the release trailer of Music had been properly listened to and acted upon. How different the representation of minorities, vulnerable groups, discriminated groups, those the industry continuously promote stereotypes about could be.
Film can reflect society, but it can also heavily influence it and bring about positive change.
ATLAS members have some advice for anyone reading this who wishes to portray characters with additional needs and disabilities:
“Let people be themselves.”
“Building the character and the movie off of ideas and experiences from people with that additional need and/or disability. Actually taking their experiences and using them in it and it’s easily possible to cast someone as an actor or actress with those additional needs playing the character with those additional needs.”
“They’d have to consult multiple different people with the same disability and not romanticise it or demonise it.”
“I would want them to actually consult with people who have those additional needs and involve them in every step of the process – writing, casting, acting, publishing.”
“Show people how I suffer.”
Written by Sabrina Peters, Additional Needs and Disabilities Participation Officer and edited by Rowan Foster, ATLAS member and Bank worker for the User Voice and Participation Team.
Harry Potter, the famous young wizarding student at Hogwarts School of Witchcraft and Wizardry took the world by storm and continues to be an important part of many people’s childhoods and lives. Some trivia for you:
Did you know that the actor who plays Harry Potter, Daniel Radcliffe, has Dyspraxia?
Dyspraxia is a developmental co-ordination disorder (DCD) that impacts the way the brain processes information, resulting in movement and co-ordination difficulties. A person’s organisation, memory, concentration and speech can also be affected. Up to 10% of the population are thought to have Dyspraxia, despite this, it is a relatively unknown condition.
From a young age, Daniel knew he struggled with certain things in life and had difficulties with school and his self esteem. As a result, his mother enrolled him in acting classes and from there his dream to be an actor was born.
“I was having a hard time at school, in terms of being crap at everything, with no discernible talent.”
At the age of nine, he made his first big break in the BBC’s David Copperfield, followed by a role in The Tailor of Panama. Then between 2001 and 2011 he captured the imagination of children, young people and adults across the globe with his portrayal of Harry Potter.
Daniel Radcliffe uses his fame to raise awareness of Dyspraxia, how it impacts individuals, and tackles the stigma that having an illness or disability means you cannot achieve your dreams.
It has been difficult for Daniel to shake off his portrayal of Harry Potter, the boy who lived, when looking for other roles as an actor. However, he has gone on to win numerous awards. He doesn’t act for the money, fame, or to be the best, he is living his dream.
“I’m lucky enough to have a job that I love, and a relatively down-to-earth lifestyle.”
This is a great book to read. It is full of action, and thrills. It is written by Anthony Horowitz. It has a total of 338 pages and you can buy it at book shops for only £7.99! It is also available as an eBook.
This is the first of a series of 10 books. It tells you a bit about the author himself and even the Guardian themselves says it is “explosive thrilling action-packed – meet Alex Rider”!
The book is all about a boy who finds out his uncle worked for MI6, who then ends up working for MI6 as they recognise his potential. He’s instantly given a secret mission with no choice to do it or not and gadgets (like James Bond!) and a quad bike with his first mission. But as the teenage spy soon finds out he’s put himself in mortal danger.
It is quite a long book and takes a while to get into reading it but once you start reading it properly it’s a really good book. Some parts are a bit wordy. The writing on the pages isn’t too small as well which makes it good if you have additional needs or disabilities or get spaced out.
I would recommend this to anyone who likes action, thriller, spy books as it is based around this. It is a brilliant book but takes a while to get into. Enjoy!
People with Autism Spectrum Disorder (ASD) experience the world differently. They have different strengths and weakness and they may behave differently to the people around them. Everyone with ASD is different!
My diagnosis
My mum and me were receiving support from White Lodge because I was finding it very hard to communicate and I was having ‘moments’. For me, moments are when I struggle with a lot of things and I get frustrated. The staff at White Lodge recommended that we see a doctor that they knew, who diagnosed me with ASD when I was 3 and half years old, which was very helpful.
Girls with ASD are underdiagnosed because they don’t meet people’s expectations due to stereotypes. My mum did not anticipate my diagnosis with ASD.
My life has changed quite a bit since I was diagnosed. Obviously not everyone has ASD, I am aware that I am quite different to other people. In my experience there are both positive and negative impacts of having ASD.
Positive impacts
I am different to other people
It would be boring if we were all the same!
I think about problems differently and come up with different solutions.
I express myself differently to others
Some people with ASD communicate differently. For example, some people can’t use their voice.
I speak three languages to help me communicate: spoken English, sign language (Makaton/British Sign Language), using feelings boards/bracelets/cards.
Due to my experiences in life and my participation in ATLAS, I am able to appreciate other people’s perspectives.
When I speak to people that I know well, I have a lot to share about my interests and experiences
I know a lot about sensory toys!
Negative impacts
I find it hard to make eye-contact
People might not think I am talking to them or that I am talking to somebody else if I don’t make eye contact.
I find it hard to keep a conversation, for example to keep focus and keep on subject.
I find it hard to manage my feelings, emotions and thoughts.
Loud noises, crowds, small spaces, lock rooms, flashing lights and the dark are difficult for me to cope with.
Flashing lights can include discos lights and even emergency vehicles!
I am very sensitive to touch.
I don’t tend to like people touching me, it feels uncomfortable. I don’t always know if people are going to be gentle and nice when they touch me and that makes me anxious.
Transport can be difficult because I don’t like long journeys.
All the sounds and people can be overwhelming.
Sometimes people come too close when I am travelling.
It can be difficult to speak to people that I don’t know.
Final thoughts
When you meet someone with additional needs, such as ASD, you shouldn’t make assumptions because you don’t know that person.
“Before I came to participation groups, I didn’t talk.”
“Like this [conversation] was a no go … and then I went to my first session and then like, you couldn’t stop me talking, because I realised I was allowed to speak and I was allowed to know things.”
“Professionals don’t know that we don’t know we’re allowed [to speak and know things]. They make us feel like we can’t have knowledge of ourselves, which is what we’re meant to have anyway!”
“That’s been my biggest part in this [participation], is knowing myself, instead of knowing what they want me to know. Without this, I wouldn’t have been able to spread my voice. I would not have a say in terms of what I struggle with.”
Recently ATLAS members have been discussing what new starters to the group might want to know before their first session!
In a discussion about what could be included in a new starter pack, the group decided it should include information about the impact of ATLAS: “The Big Picture”.
Together, members made a mind map to express what they thought “The Big Picture of ATLAS” was. Below, some of the young people agreed to share their lived experiences in relation to the impacts mentioned.
The mind map
A screenshot of the mind map made by ATLAS members
The mind map reads:
Challenging assumptions
Activism
Personal empowerment
Job opportunities
Improving services
Opens the discussion
Helping professionals understand the experience of the young people
Promoting the right of people with additional needs and disabilities
Making Surrey more accessible
Surprise professionals with our points of views
Better understanding
Helps young people be seen
Brought about massive change in services brought about us
Share our expertise on our additional needs and disabilities
Empower young people
Empower community
Meet and speak with other people with additional needs and disabilities
Quotes from young people
When working with the UVP Team:
“When you introduce yourself to professionals, they’re like “Oh, I didn’t realize you had an opinion on this”. They seem to be surprised that people who have additional needs and disabilities care about it and know a bit about it.”
The impact of participation on professionals:
“I think people really underestimate the impact that lived experience can have because it’s literally something you have to think about every day. If it is a doctor diagnosing you … they did a couple of lectures. You have it every day so you have to learn about it and they just seem surprised that you could have the motivation to want to know what it going on with you.”
Young person with Autism at university:
“Right now I am learning clinical psychology and I cannot function in my module because it’s like I’m reading about all these kind of typical things they expect to someone on the autistic spectrum to have and I’m like, this is a load of like absolute rubbish.”
Closing statement:
“Don’t assume and if you are going to make assumptions assume ability”
If you would like to read some of the feedback and consultation work that member’s of ATLAS work on, you can find out more on our ‘Monthly News‘ page!
Please check out our ‘Get Involved‘ page if you are interested in joining ATLAS.
Recently ATLAS members have been discussing what new starters to the group might want to know before their first session!
A member of the group who joined recently suggested that having some information about what the group could be like or what was involved would have been really helpful.
Together, members made a mind map to express what they thought a week as a member may include!
A screenshot of the mind map made by ATLAS members
Social media image for banana and walnut loaf recipe. Text is written below.
Ingredients
100g softened butter, plus a little for greasing
140g caster sugar
1 beaten egg
225g plain flour
2 tsp baking powder
4 very ripe bananas
85g chopped walnuts
50ml milk
Method
Step 1
Heat oven to 180C/160C fan/gas 4
Grease a 2lb loaf tin with some butter and line the base with greaseproof paper, then grease this as well.
Step 2
In a large bowl, mix together the butter, sugar and egg Then slowly mix in flour and baking powder. Peel, the mash the bananas, in a separate bowl. Now mix everything together including the nuts.
Step 3
Pour your mixture into the tin Bake for 1 hour or until a skewer comes out clean. Allow cake to cool on a wire rack before removing from the loaf tin The loaf can now be wrapped in cling film and kept for up to 2 days.
Sarah’s 5 top tips for the perfect banana and walnut loaf
Social media image for Sarah’s 5 top tips for the perfect banana and walnut loaf. Text is written below.
Tip 1: I like to use almost full black bananas for my loaf, I find these taste the best and are easier to mash into a puree.
Tip 2: I like adding larger pieces of walnut to my mix to add some extra crunch and texture.
Tip 3: If you don’t have greaseproof paper don’t worry, I sometimes grease my tin with a little butter then add a light coat of flour on top. This helps it come out of the tin nicely.
Tip 4: I make sure my egg is beaten well until little bubbles are formed. This helps the cake be lighter and fluffier.
Tip 5: I always sieve my flour when I added e as this helps stop lumps and also helps make a lighter and fluffier loaf. When it comes to mixing in the flour I mix it gently, also known as folding.
Let us know what you think it you make this recipe! Enjoy!
A wish written by Robin Williams in his Twelve Step book
Actor and comedian Robin McLaurin Williams was born on July 21, 1951, in Chicago, Illinois. When he was 16, his father retired from his job as a car salesman, and the family moved to the San Francisco area. Robin attended Claremont Men’s College and College of Marin before getting a scholarship to study at the Juilliard School in New York City. There he befriended and became roommates with fellow actor Christopher Reeve. Robin later tried stand-up comedy in San Francisco and Los Angeles, developing a successful act. Williams eventually moved back to California, where he began appearing in comedy clubs in the early 1970s.
By the mid-1970s Williams was guest starring on several television shows. After guest appearances as the alien Mork on Happy Days, he was given his own show, Mork & Mindy (1978–82). The series offered Robin the opportunity to transfer the passion of his stand-up performances to the small screen and provided an outlet for his many comedic talents. Mork & Mindy proved a big success and was key in launching Williams’s film career.
A string of successful film roles for Williams followed over the years, showcasing his stellar comedic talents as well as his ability to take on serious work. His first major role came with Good Morning, Vietnam (1987), in which he portrayed the irreverent military disc jockey Adrian Cronauer. The role earned Williams his first Academy Award nomination.
In the early 1990s he lent his talents to a number of successful family-oriented films, including Mrs. Doubtfire (1993), in which he played a divorced man who impersonates a female nanny in order to be close to his children, and the animated feature Aladdin (1992), in which he voiced the forever famous genie. He later portrayed Teddy Roosevelt in the comedy Night at the Museum (2006) and two sequels (2009, 2014). He provided voices for the animated films Happy Feet (2006) and Happy Feet Two (2011). Williams was side-lined with heart problems in early 2009, but he returned to work shortly thereafter.
On August 11, 2014, the 63-year-old comedian had passed away in his California home. His publicist released this statement:
“Robin Williams passed away this morning. He has been battling severe depression of late. This is a tragic and sudden loss. The family respectfully asks for their privacy as they grieve during this very difficult time.”
In a statement issued by his wife on August 13, she had said that her Robin had been diagnosed with Parkinson’s disease which he had not disclosed publicly. Parkinson’s disease is a disorder of the nervous system that progresses over time, affecting movement and speech. She also confirmed that the actor was battling depression and anxiety. Robin’s wife statement also expressed gratitude for the outpouring of support following her husband’s suicide and touched on the legacy he left behind:
“Since his passing, all of us who loved Robin have found some solace in the tremendous outpouring of affection and admiration for him from the millions of people whose lives he touched. His greatest legacy, besides his three children, is the joy and happiness he offered to others, particularly to those fighting personal battles.”
In November 2014, reports surfaced that prior to his death Williams was also suffering from Lewy body dementia, a type of progressive dementia often found in people diagnosed with Parkinson’s disease. In December of that year, Night at the Museum: Secret of the Tomb, the final film in the series, was released in which Williams reprised his role as Roosevelt.
Years after his death, Williams’s show business career and final days remained a captivating subject for fans. Dave Itzkoff’s Robin became a best-seller following its May 2018 publication, and two months later, HBO offered a character study of the comedian via footage of stand-up clips and interviews with family and friends in Robin Williams: Come Inside My Mind.
If you, or someone you know, is struggling with mental health difficulties and/or suicidal intent or ideation, the following organisations may be able to help:
Alternative Provision is education outside school for pupils who don’t attend mainstream school for reasons which might include being excluded, behaviour concerns, mental health or illness. Examples of Alternative Provision include Pupil Referral Units, the Alternative Learning Programme (ALP), Short Stay Schools and Access to Education (A2E).
Surrey County Council are redesigning the strategy for Alternative Provision and the User Voice and Participation Team created two online surveys to get the views of children, young people, parents and carers. The surveys were open from 23rd October 2020 – 17th November 2020. We received responses from 65 children and young people and 78 parents and carers. Below are the main things that respondents told us they would like to see in Alternative Provision:
Additional Mental Health Support
38% of children and young people said that mental health was one of the main barriers that affected them staying in mainstream education. Parents and carers also expressed that mental health was a significant issue that they felt needed attention. Therefore, more mental health support is needed to help children and young people to remain in education. Children and young people need to be able to access support easily and in a timely manner to ensure that their mental health issues are addressed quickly, and their education is not affected.
This is what some of the respondents had to say:
‘I could benefit by having someone to talk to whenever I’m feeling down or nervous, someone who could help me when I’m stressed or struggling with work etc’ Young person
‘Someone in the room knowing about my mental health and actually taking the time to help me, without cutting corners’ Young person
‘Support from a doctor or mental health professional as needed’ Parent/Carer.
Additional Support for those with Special Educational Needs and Disabilities
44% of parents and carers said that undiagnosed special educational needs and disabilities (SEND) or lack of support for those with SEND was the main barrier to their child or young person remaining in mainstream education. A number of children and young people also said that they felt their additional needs were a barrier to remaining in education. We therefore need to ensure that children and young people with SEND are diagnosed in a timely manner and that enough support is put in place to help them manage their education. Many parents and carers recognise that the cause of this is often due to a lack of funding for schools which is an area that they feel needs to be addressed.
This is what some of the respondents had to say:
‘People to help with understanding additional need even if people can’t see them’ Young person.
‘Struggle on daily basis – waiting assessment for ADHD – find classrooms very distracting’ Young person.
‘Teachers need more training and support in managing children with additional needs who perhaps do not have an EHCP in place’ Parent/Carer.
Adaptable Teaching Styles & Understanding Needs
A number of respondents were frustrated at the ‘one size fits all’ approach that they feel is often in place in education. It is important that teaching staff have a good understanding of their students’ individual needs and can adapt their teaching styles so that nobody gets left behind.
This is what some of the respondents had to say:
‘Teachers educated in different styles of pupil engagement and schools being adaptable to support this’ Parent/Carer.
‘Tasks explained in different ways if the first way is too difficult to understand’ Young person.
1:1 Support
When children and young people feel like they are falling behind in education, it can cause them a lot of anxiety and, due to class sizes, it is not always possible for the teacher to spend as much time as they need with individual pupils. Respondents from both surveys said that it would be beneficial to have more 1:1 support in place to help children and young people remain in education.
This is what some of the respondents had to say:
‘More 1 to 1 support earlier in schooling to prevent phobia from developing and placement to fail’ Young person.
‘Time out of the classroom and more 1-1 support’ Parent/Carer
Local Alternative Provision
Although some children and young people said that they would be happy to attend alternative provision that was in a different town, more than half said that travelling a long way was likely to affect their attendance. Similarly, over 70% of parents and carers felt that travelling a long distance would impact on their child or young person’s ability to attend e.g. due to anxiety, tiredness etc. We therefore need to ensure that we have enough Alternative Provision available across Surrey to avoid young people having to make unreasonable journeys.
This is what some of the respondents had to say:
‘The fact that I had to wake up every day and travel 2 hours a day to school and back was exhausting’ Young person.
‘This has happened to my son as he was travelling 45 minutes each way in a taxi. He is now unable to attend due to fatigue and anxiety and a reduced timetable is not an option due to the travelling time’ Parent/Carer.
Other things that respondents said they would like to see from Alternative Provision included:
Outdoor space – ‘‘I need space to run and climb when I feel stressed’ Young person.
Small classes and separate rooms that students can go to if they need some time out – ‘A comfortable setting, not just a classroom with different areas if I needed to be alone rather than surrounded by lots of people’ Young person.
Nice buildings – ‘They don’t have a great space to work from. They are teaching in rundown premises which need updating and, compared to local schools, that doesn’t seem fair’ Parent/Carer.
Kind teachers – ‘Good fun teachers that are more of a friend but can be professional when they need to be’ Young person.
If you would like to read more about the results of the surveys, please see the full reports below:
Lady Gaga is an American singer-songwriter, record producer, actress, and businesswoman. As well as publishing multiple hit singles and albums, she also owns her own cosmetics brand (Haus Cosmetics) and founded a non-profit organization, the Born This Way Foundation. It focuses on the empowerment of young people, improving mental health, and preventing bullying.
She also has mental health difficulties, and fibromyalgia.
What is Fibromyalgia?
Fibromyalgia syndrome is a chronic pain condition. It usually presents with widespread pain and chronic fatigue, but you can experience a wide variety of symptoms. Something a lot of people with fibromyalgia experience is cognitive and memory problems, which is referred to as ‘fibro fog’. At this time, there is no cure for fibromyalgia, although some medications and other therapies can help improve its symptoms.
Lady Gaga’s experience
She shows how this affects her in her documentary, Gaga: Five Foot Two. She has needed to cancel tours and shows because of her health conditions. Shown below is an image of her receiving medical treatment for her chronic pain. It is taken from her documentary.
She speaks about her chronic pain a lot, to raise awareness about it. She manages her condition well, and something that contributes greatly to this is her access to the latest procedures and top-quality doctors. Even with this, she still experiences debilitating pain.
Lady Gaga talks about her chronic pain:
“I get so irritated with people who don’t believe fibromyalgia is real. For me, and I think for many others, it’s really a cyclone of anxiety, depression, PTSD, trauma, and panic disorder, all of which sends the nervous system into overdrive, and then you have nerve pain as a result.”
“People need to be more compassionate. Chronic pain is no joke. And it’s every day waking up not knowing how you’re going to feel.”
“You will hear the pain in my voice and in some of the lyrics, but it always celebrates.”
“I’m a fighter. I use the word ‘suffer’ not only because trauma and chronic pain have changed my life, but because they are keeping me from living a normal life.”
“I hope that people watching it that do struggle with chronic pain know that they are not alone. […] see me dance and sing, to know I struggle with things like them and that I work through it and that it can be done.”
This personal account was written by a young person and they have shared it with the User Voice and Participation Team. This young person wishes to remain anonymous.
“Mainstream education was difficult for me because of the bullying I received from other students. Before other students found out my mum had a disability I was like any other person in the school, I had lots of friends in and out of school, but this all changed overnight. There was a boy in my class who was known for bullying students, I really don’t know how he found out about my mum’s disability but he started to walk past me and pretend he was on crutches, other people then started to do the same.
I would go into school, have form time and then walk to lesson, every time there would be a group of young people pretending to walk on crutches and laughing to each other. This then progressed to them finding out my father had died, they then started to make fun of this. I tried to deal with it by taking it as a joke, hoping they would stop, but I could not take anymore by Christmas. I spoke to my head of house about it and I felt it was not taken seriously. This response had a detrimental effect on my mental health, and I started to make up excuses not to go to school, the school would send work home for me to complete, which I was doing (Year 8).
At the beginning of Year 9 my mum and myself were asked to go to a meeting at school, we were told the main instigator of the bullying had moved to the other side of the year and the rest of his group had been expelled. I agreed to go back to school however because of my trauma, I now found it hard to be around lots of people, so I was put in isolation. This was the worst thing that could have happened because the bully then ended up in the same classroom as me.
My anxiety then went through the roof and I then refused to return to school. I felt the school were not very understanding of my issues and threatened to arrest my mum for letting me stay home.
The school did not send any work back home to me as I was not de-rolled and my mum was still being threatened. This added a lot of anxiety to what I was already feeling, in Year 9 I still managed to get out over the weekend, but this stopped quickly by Christmas as I was beaten up by the bully and his group of friends in town.
I then stopped going out for a year and a half. I was struggling with my mental health and I was referred to CAMHS.
At the beginning of Year 11 the school contacted my mum and suggested that I went to Access to Education (A2E), I was anxious about this as I had not seen anyone for a number of months.
A2E came over to my house to meet me, I was nervous, but they started a conversation about football and that put me at ease. They explained I would only be with one other person and this gave me the courage to give it a go. They eased me by letting me do the first week’s lessons online. The following week I was picked up by one of the workers and taken to the centre, she kept me calm by talking about football.
A2E supported me in that when I was having a bad day, I could do my lessons online at home and this helped a lot. A2E was more informal than school, I was allowed to call the teachers by their first name which made a difference. They mixed the day up with lessons and then we had a fun activity. There was no PE which I feel could have benefitted me but in general I felt safe and was able to learn without feeling anxious.
A positive experience was when I attended A2E another young person from my school came to the centre and he had the same experience with the same people. We supported one another through our time there and it confirmed my experience at school was unmanageable, it also began to help with my recovery.
If I could add anything to A2E I would want to include physical activities where possible. What made A2E the ideal alternative provision was the attitude of the workers involved. Their approach made A2E the best provision for me at the time, I cannot think of anything else other than to include PE, that could have made my experience better. Overall, I think there should be more alternative learning provisions like A2E for young people as there are a lot of young people struggling with mainstream education.”
Satoshi Tajiri is Japanese and born August 28, 1965. He is the creator of Pokémon which became a huge global success and he has Autism.
When Satoshi Tajiri was a young boy, he loved to explore the outdoors and was really interested with insects. He loved to collect insects, looking for them in ponds, fields and forests, constantly trying to find new insects and coming up with different ways to catch insects such as beetles. He had such an interest in collecting and studying insects that he earned the nickname “Dr. Bug” among other children and friends.
In the late 1970s, the fields and ponds that Tajiri loved as a child were used to build apartment buildings and shopping centres. At this time, Tajiri’s passion for insects moved to video games and arcades. Because of his new obsession captured so much of his time and attention that he actually cut classes and wound up flunking high school.
His parents were concerned; they actually didn’t understand his obsession with games and thought he was a delinquent throwing his life away. He eventually took make-up classes and got his high school diploma, but he only did a two year stint at the Tokyo National College of Technology studying computer science and electronics.
In the early 1990s was when Tajiri first saw two children playing together with Game Boys using the Game Link Cable. He imagined insects crawling along the cable between the two systems. As he thought about the uses of the Game Link Cable, his idea for Pokémon grew, as he wanted to give modern children the chance to hunt for creatures as he did as a child.
He pitched the idea for Pokémon to Nintendo, and although they didn’t fully understand the concept of the game, he was given some initial funding anyway. Tajiri spent the next six years working on Pokémon. Shigeru Miyamoto, the man behind Mario, The Legend of Zelda, Pikmin, and Donkey Kong, was assigned to help in the development of the initial versions of Pocket Monsters, Red and Green. While working on the game Tajiri came to admire Miyamoto as a mentor. As a tribute to Miyamoto and Tajiri, the main character of the original games and his rival have “Satoshi” and “Shigeru” among their default names.
After six years of development, Pokémon Red and Green Versions were completed. Although the Game Boy’s hardware was becoming outdated, the game still grew steadily in popularity because younger children could not afford brand-new console games so they turned to the inexpensive Game Boy games.
The success of Pokémon led to various manga adaptations, an anime, and more Pokémon games and spinoff games.
Satoshi has gone on record saying that he wanted the games to give children the same joy as he had during his bug collecting. People with autism tend to take up collecting as a hobby, so Satoshi gave them and everyone else a gift that only he could create: a whole new thing to collect.
While Mr. Satoshi Tajiri has confirmed that he has ASD, he does not publicly talk about his condition and would rather remain away from the spotlight, focusing on work and on pursuing his own interests above fame and fortune.
The evolution of personal mobility aids is very linked into the way society viewed, or was aware of, people with reduced mobility. If we look back to the Middle Ages, for example, society didn’t feel responsible for people with reduced mobility or other disabilities. Many disabled people lived as outcasts in a society full of superstition.
One of the very first wheelchairs we know about is from the 5th century B.C. and is this blog’s featured image.
Depicted in this ‘wheelchair’ is Confucius, a famous ancient philosopher and teacher. It was a very rudimentary version of a wheelchair, but was a wheeled device used with the intent of helping people with reduced mobility, so is presented here as an example.
Walking sticks have probably been used for thousands of years. Ultimately, in a rudimentary form you can just pick up a branch and use it to help you walk. However, the time at which these were used more as mobility aids rather than like hiking sticks is unclear.
1500s-1900s
Mobility aids started to develop much more around the 15th century.
The oldest known use of a walking frame in England is depicted on a piece of clothing from the 14th century. It depicts either the young Virgin Mary, or Jesus, learning to walk using a three-wheeled frame.
In the 15th century, Queen Elizabeth of Spain set up a hospital where soldiers were provided with prosthetic and therapeutic devices, and they would also receive a pension. During her time as queen, institutions for children, blind, deaf and disabled people were also created. Her husband, King Felipe II, used a wheelchair which was quite elaborate for its time. It had arm and foot rests.
But it was only in about the 18th century that wheelchairs were invented that look like the ones we use today. This wheelchair had two large front wheels and a small rear wheel one on each side.
In the 19th century, wheelchairs were made mostly out of wood and wicker. They became popular in the USA, especially amongst veterans of the Civil War (and later on, WWI).
1900-1960s
The first folding wheelchair was designed by a pair of engineers in 1932, after one of them had an accident with a landmine during WWI.
Though the first electrically driven wheelchair was created in 1924, the first electric wheelchair was invented after WWII. Lots more soldiers who suffered spinal cord damage in the war had survived, due to advances in technology and medical knowledge, which meant there was a greater demand for wheelchairs.
There had been many improvements to manual wheelchairs, but if you were quadriplegic, you were unable to use a manual wheelchair without the assistance of another person. So, thanks to support from the Canadian Government and other scientists, George Klein invented the electric wheelchair. This enabled people who did not have the energy or mobility to use a self-propelled wheelchair to have more independence.
1960s-1980s
In the 60s and 70s, mobility scooters and rollators appeared, and walkers similar to the ones used today came into development.
Mobility scooters
These came about for the first time in the late 60s. They were quite successful, and seen as alternatives to the electric wheelchair. They were designed for people who could walk, but who couldn’t travel long distances on foot because of problems in their knees or arthritis.
Walkers
A walker is the most stable walking aid. It is made of a frame which you place in front of you and hold onto during movement. These have been used for a long time, but were usually wheeled. In the 70s, walkers more like the Zimmer frames we see used today were created. They were usually made of metal.
Rollators
A rollator is a type of walker that has three or four wheels on it. It also usually has a built in seat, which allows the person using it to stop and rest when needed. Rollators often have a shopping basket attached.
It was invented by Swedish inventor and polio survivor, Aina Wifalk, in 1978.
Please note that this post has since been edited to update the blog the group’s new name: ATLAS (previously SYAS).
Introduction
Recently I have been facilitating some of the virtual group meetings with the ATLAS members. As this week is anti-bullying week, the young people have been sharing their experiences with stigma and bullying as well as discussing ableist language and how they self-describe.
Overall, it is felt and experienced that stigma and bullying are still prevalent. ATLAS are telling us that we all need to be doing more to increase the visibility of additional needs and disabilities, as well as mental health (find out more on comorbid mental health with additional needs and disabilities), throughout society.
One of the repeating themes of discussion has been the importance of language in their experience as young people with additional needs and disabilities; how the language used to define and describe them has a direct impact on their lives.
What is stigma?
In this context, stigma is used to refer to the negative stereotypes and associations that society or individuals hold against a group of people. This results in prejudice and discrimination against the stigmatised group at social and/or structural levels.
In some cases, individuals from the stigmatised group can internalise this stigma, which affects how they view themselves and the expectations they have of themselves. This is known as self-stigma. An example of this which I have heard frequently and struggled with myself can be seen with dyslexia.
Due to the stigma around dyslexia, unfortunately you often hear people with dyslexia calling themselves words like stupid, or setting low expectations for themselves. They may be used to similar treatment from the people around them since diagnosis or had heard of the stigma before realising they were dyslexic themselves. Our member Ryan touches on this in his blog on dyslexia.
Stigma can lead to people being stereotyped, isolated and discriminated against. Ultimately this can have a variety of impacts on the targeted individuals, including avoiding diagnosis or treatment, and becoming the target of bullying.
Bullying
People “make fun of disability in my school.”
There are many different types of bullying and many reasons why someone may be bullied. When it comes to young people being bullied for their additional needs and disabilities, ATLAS felt like this was predominantly because of two factors: being different and the stigma surrounding their additional needs and disabilities.
“If you are different you are going to get bullied”
There is “not much understanding about how to stop [bullying and stigma]… people are still ignorant”
Stigma-based bullying is especially complex because it not only requires localised anti-bullying action but also a society-level approach to reduce stereotypes and prejudice on a larger scale.
An important part of tackling bullying aimed at people with additional needs and disabilities will be to address the widespread ableism and lack of disability awareness in our society.
“I don’t want to be made out to be ‘special’ because I have needs.”
Our role in ableism
What I can do and achieve is “underestimated by the college and my peers” because of my diagnosis
An ableist society is defined by its assumption that people without additional needs or disabilities are the norm. The way that society, physical structures and policies are designed is inherently exclusionary and inaccessible. This results in the limitation and undervaluing of people with additional needs and/or disabilities.
The way ableism presents is complex and can impact people on a variety of fronts. This ranges from the texture of a pavement surface or the lack of braille on building signs, all the way up to public attitudes and the very language used to define us.
“[Ableist] language is used on all official forms from the government. Ableist language is used as the basis of everything.”
People who do not experience and/or are not knowledgeable about additional needs and disabilities may find it hard to see how others can be disadvantaged by design or realise the existence or extent of stigma.
“Sometimes it’s not the words themselves, but the attitudes … You can use the word disabled in a derogatory fashion.”
I would like to recommend that if you are ever in doubt about the language you are or will be using, please ask the people described or impacted by that language.
Self-description
The way in which words are used to describe people shows how society sees them and acts as a perceived measure of both their worth and overall contribution to that society. How we define ourselves reveals our internal existence and true lived experience.
“Everyone around me assumes that I am not able to do things. Whereas I can’t do some things some days, but I can other days … They had only read the language on my report and not met me. Then I spoke to them on the phone and they realised their mistake, encouraged me to go to university.”
When public speaker and anti-bullying activist Lizzie Velasquez was 17 years old, she discovered that she had been titled “The World’s Ugliest Women” due to her disability: a rare congenital disease called Marfanoid–progeroid–lipodystrophy syndrome that prevents her from developing body fat.
In this powerful TED Talk she talks about the importance of self-description for everyone and asks: “what defines you?” (closed captions are available for this video).
The User Voice and Participation (UVP) Team believe that the voice of the service user should inform our practice. Our aim is not only to make sure that the voices of young people are heard but also to facilitate participation groups that embody the meaning of participation, as defined by the young people that we work alongside.
This process is ongoing and always will be. Through this process we hope to help young people grow as individuals. We should not just take feedback from young people, but also give back in ways defined by the young people themselves. Examples of this include helping them develop confidence, providing Makaton training or interview skills advice.
“ATLAS has helped me build friends but not just in ATLAS, outside too, as it has given me confidence.”
Previously, ATLAS was called SYAS (SEND Youth Advisors Surrey). Members worked to rename and rebrand the participation group so that it aligns more closely with how they self-describe.
As a group, not only will ATLAS be redefining itself, but the young people will also be creating a report of preferred terminology, due in the summer.
“My disability is fluid.”
Due to recognition of the fact that people identify with different words in different ways, ATLAS have decided to use a traffic light system to indicate whether words should never be used (red), that some people may be okay with some words (amber) and words that are more widely accepted (green).
“I would rather say I have additional needs than say that I’m disabled.”
“Everyone identifies with the word ‘disability’ differently. Some Deaf and Blind people don’t consider being deaf and blind a disability. But for me I am chronically ill so it doesn’t matter where you put me, I’m still in pain all the time. Some disability you might have a better experience, but with my chronic illness I am not gaining, I am only losing.”
Watch this space for more news about ATLAS and how their participation will be changing to be more accessible! In the meantime I will leave you with one last thought from our young people about the language around additional needs and disabilities:
“Honestly a lot of time it’s about asking. It is about how someone self-describes.”
Jamie Oliver is a British celebrity chef. He has his own restaurant chain, has sold more than 14.55 million books, and has a reported net worth of over £240 million. He also has dyslexia! He struggled a lot at school – he was labelled as ‘special needs’ and was mocked by the other boys for being taken out of classes. He has always struggled with reading. Jamie did not finish reading his first novel until 2013: he was 38 years old.
“I’m not a good reader. I’ve always tried to read a book and given up after the first page.”
However, he does not think that dyslexia is a limitation. In fact, he has found his dyslexia to be a positive thing!
“being dyslexic or having special needs is not an excuse or reason for you not to prosper.”
What does Jamie Oliver think of Dyslexia?
Here are some positive things that Jamie Oliver has said about his dyslexia:
“If I’m in a meeting I just see the problems differently and I obsess about things differently.”
“Some bits of work need to be sweated over and cried over and crafted. Because I’m dyslexic, sometimes, when it requires a load of stuff to be done, I just do it. It’s like I’m a massive ten-tonne boulder rolling down the hill.”
“I’ve never struggled – my brain works in quite a weird way and I often imagine how it tastes and put concepts together in my head. I can 85% smell it and almost taste it, I’m normally about right. I’ve found my dyslexia to be such a gift in the job.”
“I’m humbled and excited that MI5 employ dyslexics specifically. Dyslexics look at problem-solving in a totally different way. This is why dyslexia is a gift, not a problem.”
Taken from an interview with Jamie Oliver about Dyslexia on the Guardian Website: “those with dyslexia [are] lucky”.
Made by Dyslexia
In 2017, Jamie Oliver was interviewed by the charity ‘Made by Dyslexia’. You can watch this interview over on YouTube, or read the transcript below:
Screenshot taken from the #MadeByDyslexia interview with Jamie Oliver on YouTube
Jamie Oliver #madebydyslexia interview transcript:
I loved school. I really loved school. It was like a glorified youth club. I had nothing to offer at school – I didn’t learn much about myself at school, didn’t feel compelled to excel and put extra effort into any class at school. But I liked hanging out with my mates. I didn’t bunk off, cause I was happy, you know it’s almost like the one hardest ingredient of school is if the kid’s happy, you’ve got all the permissions to do everything else. I was really happy, but nothing else happened and there’s a bit of a weird one as well because when I was at school dyslexia wasn’t really- you were either almost blind or not dyslexic so I was just put in special needs, you know, you’ve got a thick kid, so you know.
But now my nephews kind of get a proper run down. They know so much more about the particular type of help they need, they get the assistance, they don’t necessarily get dragged out of class and put in a blimmin’ room at the top of the school, like a sort of dunce do you know what I mean? So it was a bit of a stigma when I was at school – didn’t bother me, because I was one of the bigger boys, but it I mean- it wasn’t great for self-esteem really.
They [the teachers] all said the same thing you know, lovely boy, you know- polite, respectable, you know I got on with teachers but you know that’s why I love the debate about education. You know who said education is what we say it is? Oh look, a couple of dudes from 500 years ago sort of set up the structure of it, English, Maths, Science, okay okay so if you’re not very good at black and white and sort of traditional academia, you’re thick? Therefore you have no value or?
So for me personally, I’ve always been passionate since leaving school about- well there’s different types of intelligence and everyone has the ability to do brilliant. And you know, school should really be about facilitating kids to find their sort of inner genius and their inner confidence, and help them with life skills, and just being good people whereas actually school is quite rigid.
Everything’s based on measurement and every child is different, every town, every school is different, every part of the country is different – so there’s no way of controlling it. It becomes more about culture than sort of hard measurements and you know- quite a few of- well there were only five people in my special needs class but three of them have done really well. I know people that left school with As As and As, but are really on just above minimum wage.
Personally I think my strength is just a complete obsession to any expression of empowering people and teaching people to cook. Whether that’s a book, the paper its on the photographer we use, sitting next to- you know, fifteen years later, the effort on design and how we lay out a page to try and empower Billy from Bognor to be able to achieve something that’s really affordable, that a king would be happy to eat. Ultimately that is what it comes down to for me. We’ve got a massive problem in this country with under-mentored, under-loved kids that don’t see that you could be good at something very simple, and turn it into a life’s work. That you enjoy, that makes you want to get out of bed with a spark in your eye.
Rowan Foster, one of our ATLAS members, shares her knowledge and experience of comorbid mental health with additional needs and disabilities.
Contents
Introduction
Misdiagnosis
The accessibility of treatment
Chronic physical illness and mental health
Lack of services
Conclusion
Introduction
When someone has additional needs and disabilities, the way they experience the world and consequently the way they experience mental health can be very different, because their brain is wired completely differently – especially in autism. The challenges faced by someone with additional needs and disabilities, living in a world that is not built for them and often works against them, can lead to mental health issues, and in addition to this many mental health conditions are highly comorbid in people with additional needs and disabilities: for example, a study found that seven out of ten people with autism also have a condition like anxiety, depression, or OCD.
In this blog post, I will discuss some of the key issues that young people with comorbid mental health and additional needs and disabilities needs often face.
Misdiagnosis
The way that mental health difficulties can present in young people with additional needs and disabilities needs is highly varied and complex – and as a result, they can be harder to treat. Until you can acknowledge, understand, and meet the needs that a young person with additional needs and disabilities has, it’s tricky to diagnose, understand and treat their mental health difficulties.
Sadly, this isn’t always recognised, and a common result of that is misdiagnosis. Especially when a young person presents with mental health difficulties that need urgent treatment, professionals don’t always have the time or the training to properly take additional needs and disabilities into consideration. But the right diagnosis is crucial to the treatment of any mental health difficulty, because a diagnosis helps a professional decide what treatment needs to be given. Giving the wrong treatment is unproductive at best, and seriously harmful at worst.
For example, some of the misdiagnoses that are given to young people with neurodivergent needs are:
Generalised anxiety, when someone with ADHD or autism presents as restless and overthinking/has trouble concentrating, [3]and social anxiety in young people with autism and ADHD[4]
It is important to remember that someone with additional needs and disabilities can still have these mental health difficulties. However, the interaction between a young person’s additional needs and disabilities and their mental health difficulties means that a diagnosis should be made more carefully. To make sure that the right diagnosis is made, there should be professionals involved who are knowledgeable about additional needs and disabilities and how the young person’s additional needs and disabilities affect them must be considered.
A mental health professional I had in the past told me that neurodivergent needs are like a ‘neurological backdrop’ to any mental health problems that show up. It’s like painting on blue vs. red paper. You can put the same paint on the paper, in the same way, but the colour will show up differently.
Professionals can misread the severity of a mental health difficulty because the presentation in a young person with additional needs and disabilities is different to what they expect. With neurodivergent needs in particular, interpreting behaviours and reactions from a purely mental health perspective can lead to misdiagnosis. For example, an autistic meltdown could be misread as a severe mental health crisis, even though it could in fact be relatively easy to manage. If nobody in that young person’s care understands how to do so, they are left untreated.
The accessibility of treatment
Even when a young person is diagnosed correctly, treatments often have different effects on someone with additional needs and disabilities. For example, I have heard repeatedly that many young people with autism struggle with CBT, myself included. This is a therapy that the NHS prescribes for a lot of different mental health difficulties. Nonetheless, the very design of CBT means that it is not suitable for everyone. The best therapeutic approaches are individualised and this is especially true for people with neurodivergent needs.
Many therapeutic settings are not accessible to a young person with additional needs and disabilities, through practical accessibility in some cases and sensory difficulties in others. So even if you manage to get the young person treatment that will work for them, you need to make sure this is treatment they can access. What isn’t always understood about accessibility is that a place isn’t fully accessible if it causes undue stress or difficulty to access it. Even if you cannot see any issues with a young person getting to, from and inside a therapeutic setting, that doesn’t mean they aren’t there.
As a person with limited mobility, for example, there are lots of very small things that impact the accessibility of a place – most of which I never would have even thought of when I had full mobility: heavy doors, small steps, the material a path is made from. When the energy and pain it might take for me to get there and back is considered alongside the design of the environment, the recovery time required after an appointment can negatively impact my everyday life.
It is the multitude of small battles that can hurt the most. This is the same for all types of accessibility need. Consider a young person who is anxious about attending a therapeutic setting on top of having to worry about the accessibility of the building they must enter to access support. It is just another stress that they don’t need, and that could exacerbate their existing additional needs and disabilities and/or mental health difficulties.
Imagine that you have been placed somewhere that is supposed to protect you, however it is uncomfortable and possibly painful for you to be there. You are unable to remove yourself from this situation. How do you feel?
Inpatient facilities are often not accessible as they tend to be bright and/or loud spaces with very little privacy: a sensory nightmare. If a young person is there under a section, they cannot leave. Someone in an inpatient facility for their mental health would have been struggling before they arrived. They shouldn’t have to deal with inaccessibility on top of that.
Physical chronic illness/disability and mental health
It is also worth noting that if a young person has physical difficulties like chronic illnesses or disabilities, the relationship between this and comorbid mental health is often not explored in the right way. Young people are often not believed about symptoms like chronic pain – it is assumed that you’re ‘too young’ or exaggerating to get out of doing something. I’ve heard it said before that everything would be better if mental health was treated like physical health, but I’m of the opinion that this isn’t true. Regardless of if your health issues are physical or mental, if someone can’t see it, they often assume it doesn’t exist.
It can be very difficult to access medical treatment or be believed about physical symptoms if you have mental health difficulties, because medical practitioners will often assume that these are the cause. The early symptoms of my physical chronic illnesses were not recognized or addressed by paediatric health services, because they assumed that they were caused by my mental health issues. If they’d been recognized earlier, that could have prevented or at least mitigated the later decline in my physical health.
I have heard of many cases where people are prescribed psychological therapy in the expectation that this will eliminate a lot of their chronic illness symptoms. Therapy can be beneficial for long-term symptom management as it can help you learn to accept and manage your condition however, it is not a cure and shouldn’t be administered as such.
The stress of dealing with physical chronic illness and disability can cause mental health difficulties by itself, especially in cases where pain is involved. It can be so scary for a young person to have to take responsibility for their own body in that way, and it doesn’t help your self esteem when you can’t participate in the same things that your peers do. If your physical illness or disability sets in later in life, then you might also be grieving for the loss of a healthy body.
Young people with physical chronic illnesses and disabilities need empathy and support – and young people need to be believed and listened to.
Lack of services
There is no service or provision for a young person with SEND needs and mental health issues. Unfortunately, this means that nobody knows what to do when a young person needs support for both simultaneously, and nobody knows who is responsible for them. Young people with these more complex needs often find themselves jumping from service to service. The way that the services are built now means that a young person often finds themselves receiving treatment or support from a multitude of teams – none of whom speak to each other. It is usually left up to the young person and their parents or carers to coordinate their own care.
A holistic approach is key to treatment of many mental health conditions, which the current services fail to do. Mental health services do not understand the additional needs and disabilities, and the additional needs and disabilities either don’t have a service (because almost all additional needs and disabilities services are built for young people with moderate to severe visible + physical disabilities or learning difficulties with lower cognitive functioning) or their service doesn’t fully understand the mental health needs, especially when complex. These services can provide some help, but none of them can fully meet that young person’s needs. The fact that they do not talk to each other compounds the issue. The young person is left with a disorganised, often ineffective, treatment path, and it is difficult for them to know what is happening.
Conclusion
I think we need more integrated and holistic care options to provide for the needs of young people with additional needs and disabilities. We face enough discrimination from the world around us. It is disappointing that we sometimes also face this discrimination from the services that are supposed to help us. I believe that we can do better than that. We must.
I hope this post has been a valuable read for you. Maybe you related to parts of it, or maybe you’ve learnt something new. Even more so, I hope that you remember to treat the young people with additional needs and disabilities in your life with compassion and respect. Especially if that person is you.
ATLAS members chose to self-describe with additional needs and disabilities and therefore this article has been updated to replace SEND with additional needs and disabilities.
A government advert for keeping safe during the pandemic: wash hands, cover face, make space
Wash your hands regularly
Wear a face covering, where rules apply
Keep a 2m distance
Socialise only with your household, or a maximum of 6 people
Get a test and self-isolate if you develop symptoms
Keep an eye on the local alert level, and make changes based on this
Use the NHS Test and Trace app
Be prepared for a different university experience!
Whether you’re a fresher, returning student, or a postgrad, you’re likely to have a few concerns about the upcoming academic year. This year’s going to be different in a lot of ways, especially in terms of student life. We want to remind you that you can still have a fulfilling and positive university experience even under these regulations; but we urge you to be responsible and follow guidance as much as you can. We know it’s not easy, but every person can make a difference and help keep the virus contained. We’ve put together this blog post, detailing the changes you’re likely to see, and the guidance you need to bear in mind – we hope you find it useful.
