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.
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.
I have had a lot of shutdowns in the evenings since I finished college for summer holidays. In the last 7 weeks I have had a shutdown almost everyday.
During the summer holidays I have been going to a lot of clubs, and I have been having a lot of 10 to 40 minutes shutdowns at the clubs that I have been attending in the mornings and the afternoons. Sometimes I feel sorry for the staff who try to help me, but I also worry that they may call someone over and make it an incident.
A lot of people ask me if I am okay when I am having a shutdown, but I am not always able to answer, especially when I am really anxious. There have been a lot of transitions lately that are really busy and loud, which have not helped my anxiety. Some mornings I am too anxious to go into clubs and the staff I have good relationships with have to help me enter the site.
Some days I cry a lot when I am really anxious. People might worry because I might not seem like myself and then ask me a lot of questions at once about how I am and how I have been. Sometimes it can be overwhelming to talk about these things; sometimes I’m not ready to talk about it. When this happens, they might get into my personal space. I worry if people who don’t get tested regularly for Covid-19, get into my personal space.
Sometimes the behaviours of other children and young people at clubs and activities can cause me to be really anxious. Especially bad or violent behaviour.
When I am tired, I find things harder to do and possibly more overwhelming. This can make me cry and I don’t always immediately know what it is that has led to the problem.
How I manage overwhelming situations
Some of the ways I notice that I am becoming overwhelmed is when:
There are loud noises
There is a difficult situation
I see someone breaking the law or doing something dangerous
I get too hot
I am stressed
Some of the ways I look after myself when I am overwhelmed:
We found sharing their self-care tips and tricks with each other really helpful, especially during Covid. ATLAS members have found that during the pandemic it has been even more important to think about how you are spending our time, as we’ve not been able to do our everyday ‘normal’ stuff, like socialising.
We hope that others may find our thoughts and discussions around maintaining your mental health and wellbeing will be helpful to others.
The Importance of Self-Care
It has and continues to be important that you keep yourself active (however YOU define active), your mind active, and do things that you enjoy whilst staying safe. This can include any hobbies that you have like reading, drawing, listening, making music, going out for a walk: anything at all that you think will help you.
It is also important to make sure that you are eating and drinking enough water every day as that has a massive benefit to improving your mental health and wellbeing.
Tips and Tricks
We’re all different for what we find helpful. Here are some of the activities ATLAS members use for self-care:
Keep in touch with your friends because you don’t do much [during a pandemic].
Call someone everyday – video call not just phone call or texting. Because if I don’t socialise for a while, I will forget how to socialise.
Meditation and listening to music.
Click and collect libraries.
Making time for your hobbies
Weighted blankets help a lot. Weight toys, weighted lap pad and weighted jacket.
Baths and Showering.
I have been trying to explore working with my senses. A lot of time with myself, music really helps because it is hard not hearing people’s voices. Without sound I will get tinnitus or hallucinate.
White noises are also really good, especially with Autism I find big changes in volume different, so having noise all the time helps when people call me.
Keeping bin by the bed.
Using a bed desk if you can’t get out of bed so you are changing your work environment and home environment.
I try and make sure I have a main event every day. I think it is an ADHD thing – I can’t do something when I am waiting for something planned.
ATLAS members find that routines help to structure out our day-to-day life and activities. Here are some of the areas we use routines to help us with:
Eat healthy meals.
Have a timetable.
Have a sleep routine.
Similar sleep / wake up times.
Having alarms / reminders.
Put reminders on phone.
Write in a diary.
Try and have different places in the house for different activities.
Everyday, do something that you enjoy.
Have structure in school / work.
Have a time in the day where you step away from screens.
Make exercise fun – put on music and dance or play a game that includes exercise like a virtual reality game (e.g. Wii Fit).
Listen to music.
We find that routines are really helpful; they give us the information on what we want or need to be doing and when, as well as helping us to manage our time.
Importantly, routines help us to be more independent, reduce anxiety, and some of us have found it has also helped us build more confidence in ourselves!
Self-Care During Self-Care!
When developing routines, we feel it is important that you:
Don’t pressure yourself.
Take little breaks.
Tell people close to you what you need, or how you feel.
Do you have any tips and tricks you would like to share? Please comment below!
This film is about non-verbal autism and is based on the book The Reason I Jump written by Naoki Higashida when he was 13 years old. Naoki is now 28 years old and will be 29 in exactly 28 days. Naoki is a non-verbal autistic person from Japan. The book was published in Japan in 2007. The English translation was published in 2013 by Keiko Yoshida and her husband, English author David Mitchell who have a son who is autistic and non-verbal. Keiko and David were very passionate about this book because they felt this is the only book which helped them to understand their son. Naoki’s book is invaluable to help understand severely autistic children and young people because it is the only book about autism written by an someone who is autistic and non-verbal.
This film is part documentary, part dramatisation and has an actor playing Naoki Higashida when he was a boy. The film shows Naoki walking along the beach and countryside explaining lots of feelings, emotions and sensory input from his surroundings. While this is being shown there is a narrator speaking the words of Naoki from his book, where he expresses his thoughts and feelings around his autism and non-verbal autism in general. Naoki’s account being read out in the film is incredibly powerful, extremely insightful and very thought-provoking. In my opinion the most powerful quote of Noaki’s is, “To live my life as a human being there is nothing more important than being able to express myself”.
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.
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.
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!
The link between dental and oral health and learning disabilities
Good oral health is an important part in people’s general health and quality of life. There is evidence to show that people with additional needs and disabilities have poorer oral health and more problems in accessing dental services than people in the general population.
However, national, and international research, consistently shows that people with learning disabilities have:
higher levels of gum disease
greater gingival inflammation
higher numbers of missing teeth
increased rates of tooth lessness
higher plaque levels
greater unmet oral health needs
poorer access to dental services and less preventative dentistry
People with learning disabilities may often be unaware of dental problems and may be reliant on their carers/paid supporters for oral care and initiating dental visits. There may also be a need for additional help with their oral care and support to get good dental treatment because of difficulties with mental and physical health.
The website includes information on who could be entitled to free dental care and a list of useful links for young people and carers. You can also find information on your rights and the law around accessibility.
ATLAS will be reviewing this information soon! We will update this blog with their response!
If you would like to join ATLAS, find out more on our ‘Get Involved!‘ page.
It is well noted through observation and research that there is more gender diversity in neurodiverse people than neurotypical people. As gender and sexuality are social constructs, there is speculation that this relationship is due to the fact that being neurodiverse means you are less likely to adhere to cultural and social norms.
You may be wondering what all these terms mean:
Neurodiverse/Neurodiversity/Neurodivergent – variation in in the human brain. This term is used by people to express that their brains are wired differently due to having neurological conditions and/or disorders: ADHD Autism, Dyspraxia, Dyslexia, etc.
Neurotypical – this is a relatively new term that is used to describe people whose brain develops and functions in ways that are considered ‘normal’. It is the opposite of Neurodivergent.
Gender Diversity – is a measure of how much people’s gender differs from cultural or social norms due to their sex at birth.
Sexuality – is all about how someone identifies themselves in relation to the gender or genders that they are attracted to.
Social Construct – something that only exists as a result of humans agreeing that it exists.
Cultural and Social Norms – rules or expectations based on the shared beliefs of different groups of people that guide behaviour and thoughts.
Talking about experiences and difficulties of the LGBT+ community is extremely important to ATLAS members. This is not only because ATLAS want to be strong allies and raise the voices of minorities, but because a number of members are also part of the LGBT+ community themselves.
Autism and Gender
ATLAS members reflected on how they weren’t told about the relationship between Autism and gender diversity when they were diagnosed:
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.
ATLAS members raised that as a result of masking, it can be difficult to work out who they are:
As a result some members felt unable identify with labels, which could help them find support from peers and communities:
Comphet stands for compulsory heterosexuality. This is where heterosexuality is assumed and enforced by society.
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!
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.
Neurodiverse people, people with Autism, people with disabilities are just as different and individual as neurotypical people, people without an additional need or disability. Talk to us, listen to our experiences and ideas: we are experts in our perspective and have a lot to say!
To make sure that the voices of children, young people and young adults with additional needs and disabilities in the LGBT+ community are heard ATLAS will be starting drop-in sessions to provide a safe space and a platform for voices to be raised.
At the age of 22 my life changed. I got what most would describe as a label, but I don’t.
If I did describe it as a label, I wear mine with pride.
I dislike the term ‘disability’ as it makes me feel like I’m lacking something or I’m less able than a ‘normal’ functioning person, so I call them my difficulties and additional needs. Because with hard work, help and support they can be over-come, and everyone is different any way.
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.
I have made it a passion of mine to help and teach others by sharing my past and present life experiences and I take pride in where I have come from and where I’m going. My Autism has its challenges that some people don’t understand but I’m always working hard to help change their views and the stigmatism around additional needs and disabilities.
Over the years I have seen more acceptance of Autism and the challenges we face but there still is a lot of misunderstanding and judgement, its something I’m willing to help change and I will always challenge things as there is always more to be done.
Michael Fred Phelps is famous throughout the world for his legendary abilities whilst swimming. Phelps is, by far, the most successful Olympian of all time with 28 Olympic medals of which 23 are Gold. Phelps also has several world records relating to swimming and is the fastest human being alive in the water. Phelps has achieved this success for many reasons, not least being his own hard work and dedication, as well as having a body especially suited for high water mobility. But another factor that may have allowed Phelps to reach such success, much to the surprise of many, may be his ADHD. Phelps was diagnosed with the condition when he was a child, and some believe that this diagnosis played a role in making him such a world class athlete. In examining how ADHD has affected Phelps, we may learn to see Disability in a rather different light.
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.
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 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.
Over the years, Aaron has challenged himself to discover even more difficult stunts. In 2005, he achieved a mid-air 180-degree turn. On July 13th, 2006, he landed the first wheelchair backflip. Four years later August 26, 2010 he landed the first ever double backflip. As if this isn’t enough, on February 9th, 2011, he landed his very first front flip in New Zealand, and on August 25, 2012, he stunned Brazilians by jumping and successfully landing a 50-ft gap off the Mega Ramp in his chair. He is a 4-time winner of the Wheelchair Motocross (WCMX) World Championships and has also performed the first Wheelchair Flair/backflip 180, which he posted online.
After posting that first ever backflip on the Internet, life has changed for Aaron; he has travelled globally, both performing and speaking. He has attended summer camps for disabled children as a coach/mentor, and he has been featured in magazines, newspapers, and sports television. Aaron enjoys showing young kids with disabilities that a wheelchair can be a tool, not a restriction. He loves helping younger children learn how to handle their chairs in new and different ways and teaching them a trick or two. Someday he hopes to design and build the most wicked chair in the world.
Aaron “Wheelz” Fotheringham – The Story
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.
“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.”
“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.”
“Those are always the best moments of my life.”
Dude, my teeth are missing again! You lost your teeth? Again! I had so much fun knocking my teeth out the first time that I can’t help it!.
Did you know that Blind people sometimes need subtitles on videos?
Strange and nonsensical as it may seem, like a ‘how to speak French’ book being translated into French, this is a very real and very necessary accessibility requirement. This is because Blind users who watch online videos need any written words on screen, such as title cards or diagrams, to be transcribed so that their screen readers can read them as a transcript. Once explained this seems pretty clear, but why would a sighted person ever guess that this was a requirement? Not knowing this, someone writing subtitles might assume that just because the text was already on screen there is no need to write it out again in the subtitles. This is one of the many challenges to overcome when making online spaces accessible: not all accessibility requirements make sense to an able-bodied reader on first blush.
Another example is tables. If a table is laid out with labelled columns and labelled rows, the top corner of a table is often left blank. However, this is also a problem because often a screenreader reads across the rows one at a time, and the Blind person is creating a mental picture of where the different pieces go. If there is a section left blank, it can cause the columns to become out of step with the rows making the entire table impossible for the Blind person to properly parse. The solution to this is to mark the blank space with some alt text that the sighted user never needs to see but which allows a screen reader user to understand how the columns and rows fit together. Once again, a relatively simple fix that nevertheless may not have seemed necessary to many sighted people.
There are many other such examples, of things that may be vitally important for some Disabled users but are unfortunately often completely mystifying for able bodied content producers to understand. To face this problem, the key weapons in our arsenal have to be curiosity and open mindedness. Being curious about the reasons behind accessibility guidelines can help us gain a greater understanding of them. Meanwhile, being open minded to new information, even if it may seem strange or nonsensical to us at first, can allow us to avoid the pitfalls that can keep our online spaces from being accessible to all.
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.
At the age of nine, he made his first big break in the BBC’s David Copperfield, followed by a role in The Tailor of Panama. Then between 2001 and 2011 he captured the imagination of children, young people and adults across the globe with his portrayal of Harry Potter.
Daniel Radcliffe uses his fame to raise awareness of Dyspraxia, how it impacts individuals, and tackles the stigma that having an illness or disability means you cannot achieve your dreams.
It has been difficult for Daniel to shake off his portrayal of Harry Potter, the boy who lived, when looking for other roles as an actor. However, he has gone on to win numerous awards. He doesn’t act for the money, fame, or to be the best, he is living his dream.
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 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.
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!
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.
When you meet someone with additional needs, such as ASD, you shouldn’t make assumptions because you don’t know that person.
“Before I came to participation groups, I didn’t talk.”
“Like this [conversation] was a no go … and then I went to my first session and then like, you couldn’t stop me talking, because I realised I was allowed to speak and I was allowed to know things.”
“Professionals don’t know that we don’t know we’re allowed [to speak and know things]. They make us feel like we can’t have knowledge of ourselves, which is what we’re meant to have anyway!”
“That’s been my biggest part in this [participation], is knowing myself, instead of knowing what they want me to know. Without this, I wouldn’t have been able to spread my voice. I would not have a say in terms of what I struggle with.”
Recently ATLAS members have been discussing what new starters to the group might want to know before their first session!
In a discussion about what could be included in a new starter pack, the group decided it should include information about the impact of ATLAS: “The Big Picture”.
Together, members made a mind map to express what they thought “The Big Picture of ATLAS” was. Below, some of the young people agreed to share their lived experiences in relation to the impacts mentioned.
The mind map
The mind map reads:
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
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
Meet and speak with other people with additional needs and disabilities
Quotes from young people
When working with the UVP Team:
The impact of participation on professionals:
Young person with Autism at university:
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.
Lady Gaga is an American singer-songwriter, record producer, actress, and businesswoman. As well as publishing multiple hit singles and albums, she also owns her own cosmetics brand (Haus Cosmetics) and founded a non-profit organization, the Born This Way Foundation. It focuses on the empowerment of young people, improving mental health, and preventing bullying.
She also has mental health difficulties, and fibromyalgia.
What is Fibromyalgia?
Fibromyalgia syndrome is a chronic pain condition. It usually presents with widespread pain and chronic fatigue, but you can experience a wide variety of symptoms. Something a lot of people with fibromyalgia experience is cognitive and memory problems, which is referred to as ‘fibro fog’. At this time, there is no cure for fibromyalgia, although some medications and other therapies can help improve its symptoms.
Lady Gaga’s experience
She shows how this affects her in her documentary, Gaga: Five Foot Two. She has needed to cancel tours and shows because of her health conditions. Shown below is an image of her receiving medical treatment for her chronic pain. It is taken from her documentary.
She speaks about her chronic pain a lot, to raise awareness about it. She manages her condition well, and something that contributes greatly to this is her access to the latest procedures and top-quality doctors. Even with this, she still experiences debilitating pain.
Lady Gaga talks about her chronic pain:
“I get so irritated with people who don’t believe fibromyalgia is real. For me, and I think for many others, it’s really a cyclone of anxiety, depression, PTSD, trauma, and panic disorder, all of which sends the nervous system into overdrive, and then you have nerve pain as a result.”
“People need to be more compassionate. Chronic pain is no joke. And it’s every day waking up not knowing how you’re going to feel.”
“You will hear the pain in my voice and in some of the lyrics, but it always celebrates.”
“I’m a fighter. I use the word ‘suffer’ not only because trauma and chronic pain have changed my life, but because they are keeping me from living a normal life.”
“I hope that people watching it that do struggle with chronic pain know that they are not alone. […] see me dance and sing, to know I struggle with things like them and that I work through it and that it can be done.”
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.
Mobility aids started to develop much more around the 15th century.
The oldest known use of a walking frame in England is depicted on a piece of clothing from the 14th century. It depicts either the young Virgin Mary, or Jesus, learning to walk using a three-wheeled frame.
In the 15th century, Queen Elizabeth of Spain set up a hospital where soldiers were provided with prosthetic and therapeutic devices, and they would also receive a pension. During her time as queen, institutions for children, blind, deaf and disabled people were also created. Her husband, King Felipe II, used a wheelchair which was quite elaborate for its time. It had arm and foot rests.
But it was only in about the 18th century that wheelchairs were invented that look like the ones we use today. This wheelchair had two large front wheels and a small rear wheel one on each side.
In the 19th century, wheelchairs were made mostly out of wood and wicker. They became popular in the USA, especially amongst veterans of the Civil War (and later on, WWI).
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.
In the 60s and 70s, mobility scooters and rollators appeared, and walkers similar to the ones used today came into development.
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 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 rollator is a type of walker that has three or four wheels on it. It also usually has a built in seat, which allows the person using it to stop and rest when needed. Rollators often have a shopping basket attached.
It was invented by Swedish inventor and polio survivor, Aina Wifalk, in 1978.
Please note that this post has since been edited to update the blog the group’s new name: ATLAS (previously SYAS).
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.
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.
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.
Our role in ableism
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.
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.
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.
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.
When public speaker and anti-bullying activist Lizzie Velasquez was 17 years old, she discovered that she had been titled “The World’s Ugliest Women” due to her disability: a rare congenital disease called Marfanoid–progeroid–lipodystrophy syndrome that prevents her from developing body fat.
In this powerful TED Talk she talks about the importance of self-description for everyone and asks: “what defines you?” (closed captions are available for this video).
The User Voice and Participation (UVP) Team believe that the voice of the service user should inform our practice. Our aim is not only to make sure that the voices of young people are heard but also to facilitate participation groups that embody the meaning of participation, as defined by the young people that we work alongside.
This process is ongoing and always will be. Through this process we hope to help young people grow as individuals. We should not just take feedback from young people, but also give back in ways defined by the young people themselves. Examples of this include helping them develop confidence, providing Makaton training or interview skills advice.
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.
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).
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:
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.
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.
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
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
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
Some of the world’s most successful people are Dyslexic
Thanks to ATLAS – I’m happy to do public speaking!