Category: SEND

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Additional Needs and Disabilities News Personal Story SEND Social Stigma

Our Preferred Terminology

Three young people are decorating a notice board. Text reads Surrey Youth Voice. Join Us. There are cartoon images of young people around the board.

Note: you can download all the chapter pdfs at the bottom of this blog!

Contents

  1. Contents
  2. Introduction and context
  3. How this chapter works
  4. Guide to the rating system
  5. Preferred Terminology Examples
    1. 1. Use the term Additional Needs and Disabilities instead of Special Educational Needs and Disabilities (SEND)
    2. 2. Use the term Specialist Schools instead of Special Schools.
    3. 3. Do not use descriptive terms like high or low functioning.
    4. 4. Use the word Disability.
  6. Report Chapters

Introduction and context

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.

CategoryATLAS Recommendation
RedWe 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-OrangeWe 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.
OrangeWe 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-GreenWe 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.
GreenWe 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.

Report Chapters

Chapter 1 ATLAS- Who Are WeDownload
Chapter 2 ATLAS – Our Preferred TerminologyDownload
Chapter 3 ATLAS – Personal Testimonies of Ableism, Stigma and DiscriminationDownload
Chapter 4 ATLAS – The Power of Language Case Study – ATLAS MemberDownload
Chapter 5 ATLAS – Person-First vs Identity-First Language Emma AdsettDownload
Chapter 6 ATLAS – Using Language to Create Safe Spaces for Disabled People – Rowan FosterDownload
Categories
Additional Needs and Disabilities Autism Celebrities influencer Inspirational People Media Neurodiversity Personal Story Self-Description SEND

The Importance of Autistic Girl Influencers

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 (:

Autism stereotypes

@paigelayle

you’re not autistic. #fyp #foryou #autism

♬ original sound – paigelayle
Paige Layle’s Tik Tok Video on Autism Sterotypes

Awareness and information about autism in Girls

There are 4 parts, below they are in order from 1-4.

@paigelayle

learn more about autism! 🙂 i get many questions every day to make more vids about it, i will continue to show you guys! #feature #fup #fyp #featureme

♬ original sound – paigelayle
Paige Layle’s Autism in Girls part 1
@paigelayle

no such thing as high/ low functioning autism!!! it’s just how YOU perceive us. not about how we’re affected. #feature #featureme #fup #fyp

♬ original sound – paigelayle
Paige Layle’s Autism in Girls part 2
@paigelayle

more on special interests later ☺️ #feature #autism #fyp #fyp #featureme

♬ original sound – paigelayle
Paige Layle’s Autism in Girls part 3
@paigelayle

ahhh masking. can’t live with you, can’t live without you. #feature #fup #fyp #featureme #autism

♬ original sound – paigelayle
Paige Layle’s Autism in Girls part 4
Categories
Additional Needs and Disabilities Autism Neurodiversity Personal Story SEND Work

Autism Acceptance

A white hand reaches up to pull a book off a shelf packed full of other books.

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.

But here are a few things that help me:

Some random thoughts that might be useful:

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:

When you want lots of practical ideas for helping autistic people in your life:

When you want a great book for an autistic pre-teen:

And my favourite quote:

In a world of autism myths, be an autism legend.

Thank you for reading!

Categories
Additional Needs and Disabilities Education News SEND Surveys

ATLAS Consultation: SEND and Alternative Provision Green Paper

A green speech bubble made with yellow lined paper on top of plain green paper. three rolled up bit of yellow paper in the middle of the speech bubble

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.

More Information

For more information see the Council for Disabled Children’s Website and find a summary of the SEND review on the Department for Education’s gov.uk webiste.

Categories
Additional Needs and Disabilities Autism epilepsy Neurodiversity Question Card seizures

Is there a link between epilepsy and autism?

Cartoon outline of human head and the brain

What is epilepsy and seizures?

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.

Sources

Autism and epilepsy: Is there a relationship?

The link between autism and epilepsy explained

Epilepsy and autism

Autism and seizures

A guide to managing epilepsy in autism

Treatment for epilepsy

By Reneé

Categories
Achievement Additional Needs and Disabilities Autism Bullying Celebrities Health Inspirational People Media Mental Health Neurodiversity News Personal Story Strongman

Tom Stoltman: The world’s strongest man and his Autism

Tom Stolotman holding a gol trophy and smiling at the camera. He is a white man with short curly hair and a beard. He has a scottish flag around his shoulders

“Autism is my secret weapon”.

Tom Stoltman standing on the podium after winning worlds strongest man 2022
Tom Stoltman after winning WSM 2022
Tom Stoltman with his 2021 trophy after winning his first worlds strongest man.
Tom 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 Luke Stoltman competing and supporting each other during a competition.
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 Luke Stoltman smiling and pointing at the trophy after winning the 2021 worlds strongest man competition.
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.

Podcasts/ videos worth a watch:

World Autism Awareness Day – YouTube Tom Stoltman opens up about his experiences with autism and aims to spread awareness.

 Talking about autism! | Tom Stoltman – YouTube

  AUTISM IS A SUPERPOWER – YouTube Tom Stoltman

Links for support/education on accepting autism:

Autism Acceptance – Autism at Kingwood

Dont try to change autistic people, accept their differences. (autism.org.uk)

Information found from:

 Tom Stoltman – Wikipedia        World Autism Awareness Day – YouTube

Stoltman Brothers – YouTube    Talking about autism! | Tom Stoltman – YouTube

CNN: Tom Stoltman harnesses ‘superpower’ of autism to become the World’s Strongest Man – YouTube

Categories
Additional Needs and Disabilities Personal Story SEND Sensory Processing Disorder

Sensory Processing Disorder

Someone with blonde hair wearing a jumper looks towards the sun across a field. The Sun is very bright and shines across their shoulder, blurring some of the figure.

What is a sensory processing disorder?

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.
Categories
Additional Needs and Disabilities Celebration Celebrities Inspirational People Learning Difficulties Media SEND

MENCAP Myth Busters and ATLAS

Collage image of the MENCAP Myth Busters on a purple background
MENCAP logo

What is Mencap?

Mencap is a charity in the UK that works with people who have a learning disability.

What is their goal?

Mencap want a world where people with a learning disability are valued equally, listened too and included.

This is what some of their objectives are:

  • We want to have made a significant and measurable improvement to people’s attitudes towards people with a learning disability.
  • We want to have contributed to improving the quality of life for people with a learning disability.
  • We want more people with a learning disability to have stronger friendships and relationships, and be better connected to their communities

If you want to read their other objectives, as well as other information about Mencap, go on to this link:

About us – What we do | Mencap

Who are the Mythbusters?

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.

ATLAS Logo

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 Aims, Priority Areas and Action Cards – ATLAS Surrey (surreyatlas.uk)

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:

ATLAS Groups – ATLAS Surrey (surreyatlas.uk)

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:

ATLAS Aims, Priority Areas and Action Cards – ATLAS Surrey (surreyatlas.uk)

Action cards and their importance

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.

Mencap

Website:

Learning Disability – Down’s Syndrome – Williams syndrome | Mencap

Facebook: Mencap – Home | Facebook

Twitter: Mencap (@mencap_charity) / Twitter

Youtube: Mencap – YouTube

Linkedin: Mencap | LinkedIn

Instagram: https://www.instagram.com/mencap

ATLAS

Website:

About User Voice and Participation – Surrey County Council (surreycc.gov.uk) (Undergoing change)

Facebook: Surrey ATLAS – Home | Facebook

Instagram: https://www.instagram.com/surreyatlas/

Youtube: User Voice & Participation – YouTube

Twitter: ATLAS Youth Advisors (@SurreyAtlas) / Twitter

Categories
accessibility Additional Needs and Disabilities Autism Care Education GCSE Learning Difficulties Mental Health Self-Care Uncategorized

Autism and GCSEs 

A picture of Tallulah against a blue and pink background. Tallulah is a young girl wearing a white shirt and have light brown hair that is tied back. Text reads: Autism and GCSEs Deputy Young Mayor Tallulah

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 🙂 

Categories
Additional Needs and Disabilities Book Review Film Media SEND

Wonder: is Auggie’s disability portrayed to a high standard?

The book cover of wonder with the saying don't judge and book by it's cover, only book has been crossed out and replaced by boy and it's cover has been crossed out and replaced with his face. So it instead reads: don't judge a boy by his face.

What is Wonder about?

on the left the book cover of Wonder is shown which has the outline of a face with short black hair and Wonder written over a blue eye. And on the right it is an image of the film cover, a boy stood wearing a motorcycle helmet with the visor up, wonder is written over the top
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?

Screenshot of the film wonder, close-up of Auggie's face. Prosthetics have been used to give the actor a facial difference.
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 L to R: Jacob Tremblay as "Auggie," Elle McKinnon as "Charlotte" and Noah Jupe as "Jack Will" in WONDER.
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.

Categories
ADHD SEND Uncategorized

Current Action Cards for Surrey – January 2022

What is an Action Card:

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!

Categories
Additional Needs and Disabilities Autism Dyslexia Dyspraxia Education Learning Difficulties Mental Health SEND Uncategorized

Additional Needs and Disabilities support at Colleges in Surrey

Introduction

ATLAS recently raised the below Action Card:

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:

https://nescot.ac.uk/about-nescot/student-services/send-information.html

Brooklands College

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:

Additional Learning Support

East Surrey College

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:

https://www.esc.ac.uk/support-for-students

Farnborough College of Technology

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:

Additional Learning Support

SEND Local Offer

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:

https://www.surreylocaloffer.org.uk/kb5/surrey/localoffer/home.page

Categories
Additional Needs and Disabilities Autism Neurodiversity Personal Story Safety Self-Care

My Meltdowns and Shutdowns

A young girl is sat crossed legged on a sofa playing with her small dog. She is wearing over ear headphones and her laptop is next to her.

Definitions

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:

  • Weighted blankets/jackets
  • Fidget toys and chew toys
  • Sitting with my dog, she puts her paws on my lap
  • Going for walk
  • Writing stories
Categories
Additional Needs and Disabilities Autism Film Inspirational People Media Neurodiversity

Film Review: The Reason I Jump

Movie Screenshot of the reason i jump, close up of a young boys face as he looks behind him. Text reads: the reason I jump. "A work of cinematic alchemy" the hollywood reporter.

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 reason I jump. Young boy is looking up towards the sky. He is wearing a red raincoat. In the background there are pylons.
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 the reason I jump. Everything is in tones of blue. You can see a young man in the forefront looking to the right. A behind him another man looking the same way.
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.

Categories
Additional Needs and Disabilities Anxiety Autism Health Learning Difficulties Mental Health Neurodiversity Personal Story SEND Sensory Processing Disorder

My Anxiety, ASD, and Me

Autism spelt out in scrabble tiles on a spotty background. The spots are different colours and the scrabble tiles are across the middle row, inside one dot each.

What is Anxiety?

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.
  • Not make threats to try and make me do things.
Categories
Additional Needs and Disabilities Health SEND

Dental and Oral Health with Additional Needs and Disabilities

A blue toothbrush on a blue background with toothpaste on the bristles.

Introduction

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.

Available Support

All this information and more can be found on the Gov website linked here: Oral care and people with learning disabilities – GOV.UK (www.gov.uk)

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.

Categories
Additional Needs and Disabilities ADHD Autism Dyslexia Dyspraxia LGBT+ Neurodiversity Personal Story Self-Description SEND Social Stigma

Neurodiversity: Gender and Sexuality

Model Brain is shown next to a model nerve stem.

Introduction and defintions

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
Close up of a palm with the LGBT+ rainbow flag painted on it with a heart drawn in black biro on top of it.
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!

A white board being held up that reads in rainbow coloured letters: Hello, my pronouns are ...
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.

Categories
Additional Needs and Disabilities Autism Personal Story

Advocating for Change: Autism Awareness and Acceptance

Wooden squares scattered. Each square has a different capital letter written on it in black. & squares are shown in the middle that read: My Story

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.

Photopgraph of Dr. Seuss with the illustrations of some of his characters from his books drawn around his head. He is wearing large square glass a grey blazer and a bow tie.
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.

Photograph of Tim Burton with some of his characters pictured around his head and shoulders. Tim is wearing sunglasses and a black blazer.
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.

Awareness and Acceptance.

Categories
accessibility Achievement Additional Needs and Disabilities ADHD Celebrities Inspirational People SEND Stigma

In at the Deep End: How ADHD Shaped the Success of Michael Phelps

Michael Phelps swimming through the water in a pool towards the camera. He is wearing a swimming cap and goggles.

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.”

Categories
Additional Needs and Disabilities Autism Celebrities Inspirational People SEND

“I am not a typical autistic person – because there isn’t a typical autistic person.”

A smiling Chris, holding one of his Poodle dogs in his arms.

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.”

Categories
accessibility Achievement Additional Needs and Disabilities Celebrities Inspirational People mobility aids News Spina Bifida

“There’s wheels stuck to my butt, how can that not be fun?”

Aaron Fotheringham on a green wheelchair, wearing a helmet. He is upside down in the air with his hand on the edge of a half pipe.

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.”

A young Aaron Fotheringham sitting in his wheelchair smiling with his arms crossed. He is wearing a navy blue, red and white stripped polo shirt with blue denim jeans. In the background behind him is a large rock and some trees.

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.

Aaron Fotheringham in his wheelchair on one back wheel doing a wheelie, smiling and his arm to the side and his hand with his pointing finger pointing up. He is wearing black denim jeans, a black vest top with decorative imaging on it, dirty white trainers and a black cap on his head. The background is red.

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!.

Categories
accessibility Additional Needs and Disabilities Blind IT SEND

Subtitles for the Blind: Unexpected Outcomes of Accessibility

Accessibility is written in white chalk on a background that looks like a blackboard surface.

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.”

Categories
Additional Needs and Disabilities Autism Celebrities Film Media SEND Social Stigma

Not ‘Music’ to Our Ears

Contents

  1. Young people’s views on Sia’s casting of Music
  2. The portrayal of autism in the media
  3. Disability is fluid
  4. I’m going to crush you with my love
  5. Participation, participation, participation

Young people’s views on Sia’s casting of Music

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.

A screenshot of a tweet exchange between Helen Z and Sia. Helen Z's tweet reads: 'Several autistic actors, myself included, responded to these tweets. We all said we could have acted in it on short notice. These excuses are just that - excuses. The fact of the matter is zero effort was made to include anyone who is actually autistic. #NothingAoutUsWithoutUs.' Sia's response reads: 'Maybe you're just a bad actor.'
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.”

A still from the TV show 'The Good Doctor' showing the main character Dr. Shaun Murphy played by Freddie Highmore.
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 responses about the portrayal of autism in the media.
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”

Clem Bastow, in her Guardian Article: Sia’s film Music misrepresents autistic people. It could also do us damage

Disability is fluid:

  • 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.

In 2020, the misuse of restraint by law enforcement was brought under further scrutiny after the death of George Floyd. However, restraint is also used in health, care and school environments. At least 20 children have died in the U.S. as a result of restraint since 2001.

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.

Categories
Additional Needs and Disabilities Celebrities Dyspraxia Inspirational People

Daniel Radcliffe: “I don’t want anyone to ever say that I don’t belong where I am”

A close up photograph of Daniel Radcliffe's face. He is smiling and looking off to the right hand side. He has a neat short beard and his short brown hair is styled to stand on end. He is wearing a blue crew-neck, long sleeve top. His left arm is held up by his face, but not touching it, his hand curled into an open fist.

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.

Image of Daniel Radcliffe in a navy jacket. The picture includes a quote which says; “Do not let it stop you. It has never held me back, and some of the smartest people I know are people who have learning disabilities. The fact that some things are more of a struggle will only make you more determined, harder working and more imaginative in the solutions you find to problems.”

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.”

Categories
Additional Needs and Disabilities Autism Personal Story SEND

My ASD

Wooden squares scattered. Each square has a different capital letter written on it in black. & squares are shown in the middle that read: My Story

What is ASD?

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.

Categories
Achievement Additional Needs and Disabilities Autism Personal Story SEND

The power of participation: getting your voice heard

Wooden squares scattered. Each square has a different capital letter written on it in black. & squares are shown in the middle that read: My Story

“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.”

Categories
Additional Needs and Disabilities Personal Story Self-Description SEND

ATLAS: The Big Picture

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 a mind map on "The Big Picture". The text in the image is written below as it is hard to read due to the low resolution.
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.

Image button encouraging you to get involved. In the middle there is the ATLAS logo and surrounding it, It reads: Get Involved! "No Decision About Us Without Us!
Categories
Additional Needs and Disabilities Personal Story Self-Description SEND

A week in the life of an ATLAS member

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 a mind map on "Week in the life of an ATLAS member". The text in the image is written below as it is hard to read due to the low resolution.
A screenshot of the mind map made by ATLAS members

The mind map reads:

  • Really enjoyable
  • Trips
  • Talk about our wellbeing
  • Action Cards
  • Surveys
  • Awards
  • Meeting new people/friends
  • Weekly groups
  • Social media posts
  • Raising awareness
  • Reducing stigma
  • Sharing your experiences
  • Makaton/learning new skills
  • Quizzes
  • Writing blogs
  • Interview panels
  • Parties/social events
  • Routine
  • Support if we need
  • Gaining confidence
  • Learn about other opportunities

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.

Image button encouraging you to get involved. In the middle there is the ATLAS logo and surrounding it, It reads: Get Involved! "No Decision About Us Without Us!
Categories
Celebrities Inspirational People Mental Health SEND

From genies to presidents: Robin Williams

A young Robin Williams smiling with a yellow background. he is wearing a white shirt with rainbow braces.

“I want to help people be less afraid”

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.

A composite image of three different pictures of Robin Williams in a row. On the left, Robin Williams is shown in his Mrs. Doubtfire costume: an old white lady with grey hair pulled up into a bun, wearing large circular glasses, a white shirt and blue and white cardigan. She is holding a feather duster. In the middle Image, Robin Williams is shown back to back with his character from the animated movie Aladdin. The genie is blue, with pointy ears and a thin black beard and think black eye brows. On the right, Robin Williams is shown in his costume from Night at the Museum. He is dressed in a United States Veterans uniform, with a moustache and small circular glasses.

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.

Robin Williams looking up he's wearing a black t-shirt and has a gold chain necklace around his neck. The background is black. Quote reads; No matter what people tell you, words and ideas can change the world. -Robin Williams

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:

Categories
Education SEND Surveys

Public Feedback on Surrey’s Alternative Provision

Image depicting a number of small wooden blocks. All blocks are blank apart from five of them which spell out the word LEARN.
Photo by Pixabay on Pexels.com

Contents

  1. Introduction
  2. Additional Mental Health Support
  3. Additional Support for those with Special Educational Needs and Disabilities:
  4. Adaptable Teaching Styles & Understanding Needs
  5. 1:1 Support
  6. Local Alternative Provision

Introduction

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:

alternative-provision-report-parents-carersDownload
alternative-provision-report-children-young-peopleDownload
Categories
Celebrities chronic illness Disability History Month Inspirational People SEND

Lady Gaga and her Fibromyalgia

Lady Gaga is shown from the chest up holding a microphone to her mouth and pointing off to the right of the image. Her her is blonde and in a bun. She is wearing lace covered in bright red roses and green vines.

Who is Lady Gaga?

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.

Lady Gaga is shown lying under a plastic sheet, wincing in pain. There are medically gloved hands - one holding an ultrasound machine and two administering a needle into her shoulder.

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 Gag is shown from the hips up on stage. She is wearing all black. Her outfit is sleeveless so you can see her tattoos. One hand is holding a microphone to her moth and the other is outstretched.

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.”

Categories
Autism Celebrities Inspirational People SEND

Satoshi Tajiri: how autism inspired Pokémon

Image Description: The creator of Pokémon, Satoshi Tajiri picture with a plush Pikachu. He is sitting in an egg chair that is red on the inside. He is wearing a black blazer with a blue top and black trousers. He is holding a large pikachu plush toy between his legs.

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.

Categories
Disability History Month Education SEND

The History of Mobility Aids

Image Description: Confucius in a wheelchair. The picture is a black and white drawing showing Confucius in a carridge-like wheelchair being pushed by a person. Three people who appear to be working in a field are greeting Confucius as he passes. The style is an ancient chinese design.

Introduction

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.

A drawing from the 15th Century of a man in a whellchair. The chair is large with small wheels. The person is slightly reclined due to the design of the chair

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.

A drawing of an 18th century wheelchair. The two front wheels are large, with two back small wheels. There is a large handle at the back for the person pushing the wheelchair to use. There is also a lap tray and foot rest

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).

A drawing of an 19th century wooden wheelchair. The two front wheels are large, with one small back wheel. There is also a foot rest

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.

A photograph of a mobility scooter from the late 60s. The scooter has a minimal design that is mostly metal. There is a brown plastic, cushion chair with arm rests on top of a metal plate. In front there are handlebars for steering. It has three small wheels, two at the back and one at the front.

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.

A technical drawing of a mobility aid walker. It shows a metal frame with 3 sides and handles at the top in two main designs and from different angles.

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.

A picture of a blue framed rollator with a black basket. It has four white wheels and a seat above and behind the basket.
Categories
Bullying Education Mental Health SEND Social

How Language Impacts Lives: Stigma and Ableism

A woman sits on a block with her knees hugged to her chest and her head resting on her knees. She is wearing a black camisole dress and has long hair. Her left arm has a prosthetic. The back ground is plain and the image is in grey-scale.
Photo by Anna Shvets on Pexels.com

Contents

  1. Introduction
  2. What is stigma?
  3. Bullying
  4. Our role in ableism
  5. Self-description
  6. The power of participation

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).

You can find out more about Lizzie on her Youtube channel.

The power of participation

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.”

Categories
Celebration Celebrities Dyslexia Inspirational People SEND Work

Jamie Oliver: a chef with dyslexia

"Jamie Oliver is picture leaning on a chopping board on a kitchen counter top. Wearing a blue-green sweat-shirt with his short hair brushed back, Jamie Oliver stares straight at the camera. The kitchen is tidy but decorated in a maximalist style using bowls, jugs, kettles, storage containers and plants."

Who is Jamie Oliver?

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.”
Jamie Oliver stands giving eye contact to the camera and offering a plate of food forward. Wearing a blue shirt, with his short hair brushed back, Jamie Oliver is seen in what looks like a home kitchen.
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:

Jamie Oliver can be seen sitting on a stool in mid-conversation. He is wearning blue jeans and a dark blue shirt. His hair is ruffled. The background is a blurred out, large kitchen with big windows.
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.

Categories
Mental Health Personal Story SEND

Comorbid Mental Health with Additional Needs and Disabilities

Wooden squares scattered. Each square has a different capital letter written on it in black. & squares are shown in the middle that read: My Story

Rowan Foster, one of our ATLAS members, shares her knowledge and experience of comorbid mental health with additional needs and disabilities.

Contents

  1. Introduction
  2. Misdiagnosis
  3. The accessibility of treatment
  4. Chronic physical illness and mental health
  5. Lack of services
  6. 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:

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.

Resources

[1]https://www.autismresearchtrust.org/news/borderline-personality-disorder-or-autism

[2]https://pro.psychcentral.com/aspergers-syndrome-vs-ocd-how-to-avoid-misdiagnosis/

[3]https://www.drakeinstitute.com/adhd-vs-anxiety-whats-the-difference

[4]https://socialanxietyinstitute.org/social-anxiety-and-aspergers-differences

[5]https://guilfordjournals.com/doi/abs/10.1521/adhd.2005.13.3.9?journalCode=adhd

[6]https://adhdnews.qbtech.com/odd-a-problem-of-misdiagnosis#

[7] https://network.autism.org.uk/good-practice/case-studies/eating-disorder-or-disordered-eating-eating-patterns-autism

Categories
accessibility Additional Needs and Disabilities Dyslexia Personal Story SEND

Dyslexia

The word Dyslexic written out on top of a light box in stylistic text. Books are stacked either side.

What is Dyslexia?

Dyslexia is an Additional Need and Disability (AN&D).

5% to 10% of the population have it. It is the most common specific learning difficulty. It is something that runs in families and is a lifelong disability. It is something you learn strategies to help you cope with, so people think you outgrow it, but you just learn to live with it.

Dyslexia is not just about muddling letters: it is when you struggle with spelling, confuse your letters (for example b and d), or may have difficulties reading, as you are not able to recognise sounds. Sometimes dyslexics come across as lazy or slow, as some struggle with following instructions.

Dyslexics find problem solving more easily than others – they think out of the box. Many dyslexics have high IQs and are incredibly clever people.
A myth is that dyslexics see letters moving around when black print is on white paper. That is visual stress. Although a lot of people with dyslexia have it, you can have visual stress without dyslexia.

Coloured overlays are not a cure for dyslexia, they help people with visual stress.

How to learn spellings

Depending on how your brain works, there are various spelling strategies, I found. Rainbow writing works the best for me. You learn each syllable in a different colour and then put it to one word.

An example list of words written using the rainbow writing technique for learning how to spell.
Example of Rainbow Writing

If you begin to remember spellings this way, try look, cover, write, check – you literally do as it says.

Staying on track with written work.

I find it hard to plan my work in my head and get it written down. I can talk all about a project, what I am going to do. However, when it comes to getting it on paper, I just can’t do it. A tool I have learnt is to ‘Mind map’ my ideas.

Example of a Mind Map. The central topic is in the middle with lines leading to subtopics and then lines from those to related ideas.
An example of a mind map

Start with the topic in the middle, then ideas coming off for each chapter and ideas off of each of those until I have the base details down, you can do each area in different colours if it helps. Then number them so you know what order to write it in.

General Day to Day Challenges

Because my brain has to work so hard, I can find it hard to concentrate for long periods of time and then when I get a break, I do tend to go a little crazy – just to unwind and relax.

My friends sometimes get angry with me, as I can take things very personally and then I get upset – it’s just how my brain works.

I’m not very organised, so I need help packing my school bag (amongst other things), otherwise I will forget things I need. Don’t give me a list of instructions, my brain can only cope with 2 instructions at a time, otherwise I will forget almost everything you have asked me to do – write it down, so I can do it and tick it off.

People used to call me stupid, thick, lazy or idiot – I now know that’s not true!

Things I Am Good At

I am a really good problem solver, I come up with solutions that many people wouldn’t have considered, I think out of the box – this is a skill that many businesses are looking for, so I am hopeful this will help me be successful when I am older.

Maths is an area that I do really well with, I think it’s my problem solving that helps me out.

Many people comment that I am kind and caring, I believe this is because, how I see the world and others, I know how I get treated, so ensure that I don’t treat people that way.

I have a higher than average IQ, many of the world’s most successful people are dyslexic – Richard Branson, Albert Einstein, our Health Minister – Matt Hancock, Tom Cruise and many more.

Before I found the SYAS team, I wouldn’t take part in a class assembly, however since I have been a member, it has boosted my confidence and I am more than happy to speak up and speak my mind, without worrying about how others see me.

The positives and negatives of Dyslexia

The word Dyslexia is draw out
Drawing of the word Dyslexia

Negatives:

  • My brain works much harder than most people’s
  • I’m not lazy, I just need more time to process what you are asking
  • I take things really personally
  • You need to give my instructions in small steps

Positives:

  • I think outside the box
  • I’m really good at maths
  • I’m a good problem solver
  • I have a higher than average IQ
  • I tend to do the right thing
  • I’m creative
  • Some of the world’s most successful people are Dyslexic
  • Thanks to ATLAS – I’m happy to do public speaking!

Categories
SEND

Celebrating the achievements of people with Autism!

SYAS would like to share some amazing achievements of famous people who have Autism – check it out!

Celebrating AutismDownload
Categories
Covid 19 Mental Health Safety SEND

Virtual Support!

The User Voice and Participation Team would like to share what virtual Emotional Well-being and Mental Health support is available to you! Accessing virtual support is so important to keep ourselves emotionally and mentally supported especially during self isolation! Make sure to check the services out!

Virtual Support for Young People!Download
Categories
News SEND

Virtual SYAS

We are proud to announce Virtual SYAS is taking place next week via Facebook Video Chat Friday 27th March! Come and join in!

Categories
SEND Social Work

Top 10 do’s and don’ts when working with children and young people with SEND

SYAS creates a top 10 do’s and don’ts when working with children and young people with Special Educational Needs and Disabilities! Click to check it out!

Categories
News SEND

Surrey County Council’s SEND Partnership Strategy!

Our wonderful SEND Youth Advisors experience features in Surrey County Council’s SEND Partnership Strategy – click to check it out!

Surrey County Council’s SEND Partnership StrategyDownload
Categories
News SEND

SYAS – SEND Youth Advisors Surrey

SYAS is a participation group for children and young people age 10-25 with Special Educational Needs and Disabilities (SEND) living in Surrey.

There are two SYAS groups across Surrey:

Epsom – runs the 3rd Wednesday of every month
Woking – runs the 1st Thursday of every month

If you would like to be involved make sure to contact us!
Email: User.voice@surreycc.gov.uk
Facebook: SYA Surrey
Twitter & Instagram: @Ourvoicesurrey