Our Preferred Terminology

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.

Category	ATLAS Recommendation
Red	We recommend that red words are not used because they are harmful and may be offensive. We believe these words spread ableism, stigma, and discrimination
Red-Orange	We recommend that red-orange words are not used to talk about all young people with additional needs and disabilities. However, some individuals may prefer this language, or the word may be deeply entrenched into a system that will need time to adapt its language.
Orange	We recommend that orange words are not used without the permission of the young person(s) with additional needs and disabilities that you are talking to or about.
Orange-Green	We recommend that you are careful when using these words as whether or not they are appropriate to used may vary depending on the person or group you are talking or referring to. A majority of people may have no problem with these words, however there will be people who prefer to self-describe differently.
Green	We would like to encourage you to use green words. These words are used by us ATLAS members to self describe and identify.

Table 1- ATLAS language recommendations for each word category.

Preferred Terminology Examples

1. Use the term Additional Needs and Disabilities instead of Special Educational Needs and Disabilities (SEND)

“We don’t like to be called special.”

-ATLAS Member

“[Special] is a euphemism. The way that it works with euphemisms is that they’ll put a euphemism on a term that is regarded badly by society. But unless you change the underlying attitude then the new word will just become a bad word in itself.”

-ATLAS Member

During ATLAS sessions we discussed how people wouldn’t be able to immediately stop using some of the acronyms with the word “special” because the term “special” is used nationally for young people with additional needs and disabilities. This includes the acronyms SEND (Special Educational Needs and Disabilities), SEN (Special Educational Needs) and SENCo (Special Educational Needs Co-ordinator).

Therefore, we have allocated a red-orange rating: it is ok to use for now, however we would like to encourage professionals to start moving away from terms that contain the euphemism ‘special’.

SEND, SEN, and SENCo are red-orange terms.

Not only do these acronyms include the word special, but they also relate someone’s needs directly to an educational setting. We want these terms changed to remove the ‘educational’ component from the descriptor.

“It is not just in school but out in society.”

-ATLAS Member

Additional needs and disabilities is a green term.

Instead, we would like the term additional needs and disabilities to be used. We also recommend asking the young people that you work with what words they would like to replace these terms.

2. Use the term Specialist Schools instead of Special Schools.

“I tend to use the term specialist when talking about schools instead of special. They are targeted for a specific thing, so they are specialist, not special.”

-ATLAS Member

The term special school is used to describe a school that is for children or young people with additional needs and disabilities.

Special school(s) is a red term.

Specialist school(S) is a green term.

3. Do not use descriptive terms like high or low functioning.

Descriptive terms are words or phrases that are used to further define a diagnosis. During ATLAS we raised that these words are often used to place people with additional needs and disabilities onto a linear scale.

“No-one is in a box, no-one is linear.”

-ATLAS Member

There are two examples in particular that ATLAS recommends people stop using and that is high and low functioning or cognitive functioning.

The terms high or low functioning are rated as red.

“People find high functioning and low functioning very offensive.”

-ATLAS Member

The term low cognitive functioning is rated as red.

“I would say I would be called low functioning. It separates disabled people. I’d say it would make people feel different and not in a good way. You’re making another minority.”

-ATLAS Member

Disability is fluid and therefore viewing the needs of disabled people in a linear way does not reflect reality. Having such a restrictive label attached to us can be very limiting in the way we are then treated. As disabled people we can have different abilities to cope at different times, however we can end up being defined by how we were able to cope in a specific moment and/or environment during an assessment. This means that the assessment results may not be applicable to our lived experience as a whole and is not always reflective of how we may respond in a different situation.

“They always think I’m needy or that I don’t need any adaptions, when I’m in the middle and have a spiky profile.”

-ATLAS Member

“A spiky profile is so so so common in neurodivergency as well. That being, having different levels of support needs in different areas.”

-ATLAS Member

“Everyone around me assumes that I am not able to do things. Whereas I can’t do some things some days, but I can other days. Phone calls are difficult for me because I am a selective mute. In person I can write a note.”

-ATLAS Member

“Some people at my Uni use high or low support needs instead.”

-ATLAS Member

4. Use the word Disability.

Disability is a word that is widely accepted by the disabled community as the word that the community identifies with and wishes to be used to describe them. In ATLAS we identified the following reasons why young people might not use the word disability to self-describe and identify:

• Due to ableism, stigma and discrimination, some of us felt differently about the word disability.
• In ATLAS we also recognised that until society is more inclusive, the needs of disabled people will be seen as additional to the ‘norm’. Therefore, ATLAS felt that at this point in time, they could not categorise the word disability as a green word.

Disability is a green-orange word.

When professionals are working directly with young people with additional needs and disabilities, ATLAS would like them to ask those young people how they self-describe and identify, then use that language.

Importantly, when you are talking about or to the community as a whole or are referring to additional needs and disabilities in general, you must include the word disability, so that you are not excluding people or promoting stigma and discrimination through omission.

“Some people have reclaimed ‘disabled’ – some people have reclaimed, some not.”

-ATLAS Member

“Everyone identifies with Disability differently. Some Deaf and Blind people don’t consider themselves disabled. But for me I am chronically ill, so it doesn’t matter where you put me, I’m still in pain all the time.”

-ATLAS Member

Remember,

“Disability is not a bad word.”

-ATLAS Member

ATLAS would like to see a future where people are not uncomfortable or afraid to identify as disabled.

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

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

Autism Acceptance

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:

• This is the milkshake that gave me my energy and concentration back.
• This is the most useful alert card I have.
• These are my current favourite earplugs – they don’t block your ears completely, so they don’t affect balance or eating.
• These are my glasses that make things easier.
• This is the app I use when struggling to talk or remember what to say in public.
• Here’s the clinical trial I’m in – they’re still looking for more participants.

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:

• All Cats are on the Autism Spectrum
• The Ice Cream Sundae Guide to Autism

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

• The Autism Discussion Page series
• Avoiding Anxiety in Autistic Children/Adults
• From Anxiety to Meltdown
• The Neurodiverse Workplace
• Autism: How to raise a happy autistic child
• Autism, Anxiety and Me

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

• The Spectrum Girl’s Survival Guide
• The Survival Guide for Kids with Autism Spectrum Disorder
• When you want to understand autistic people a bit better:
• What Every Autistic Girl Wishes Her Parents Knew
• Existing Autistic

And my favourite quote:

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

Thank you for reading!

ATLAS Consultation: SEND and Alternative Provision Green Paper

On Wednesday 29^th 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.

Tourette’s Awareness: Billie Eilish’s Story

Who is Billie Eilish?

Billie Eilish is a well-known international pop icon and lives in America, she has released two albums and an EP, she is also a seven-time Grammy Award winner, and she lives every day with Tourette Syndrome.

What is Tourette’s Syndrome?

Tourette’s is a nervous system disorder that presents with repetitive and uncontrolled movements (liking blinking or shoulder shrugging) or sounds. These are called “tics”. The condition is often present from childhood, but can be diagnosed later in life.

Billie shared that she’s had Tourette’s her “whole life”.

Billie Eilish and Tourette’s

While Billie has spoken openly about her experience with Tourette Syndrome, she hasn’t gone into too much detail.

Billie also hasn’t spoken about what her tics are, only that “certain things” can increase the intensity or trigger episodes.

Unfortunately, fans made YouTube videos of her tics which include her shrugging her shoulders, blinking rapidly, and looking upward. As a result, Billie shared her diagnosis through Instagram:

“I would love to get this straight so everyone can stop acting goofy… I have diagnosed Tourette’s … My Tourette’s makes easy things a lot harder. Certain things increase and/or trigger the intensity of the tics. But it’s something I grew up with and am used to … suppressing them only makes things worse after the moment is over“

Extract from Billie’s post on Instagram revealing her Tourette’s diagnosis

Billie has talked more about living with Tourette Syndrome in an interview with Ellen DeGeneres in 2019. She said on Ellen that she hadn’t spoken publicly about her condition before because she didn’t want her condition to define her. However, she now feels more positively about sharing her diagnosis:

“I think I also really learned that a lot of my fans have it, which made me feel kind of more at home with saying it, and also I felt like there was a connection there”.

You can watch the interview on: Billie Eilish Gets Candid About Tourette Syndrome – YouTube

That’s not the only interview Billie has done about Tourette’s. She gave fans insight into what her episodes are like while speaking in another interview one month prior:

“The internet hasn’t really seen the bad ones [tics], because I’m really good at suppressing them. The thing is, the longer you suppress them, the worse they get afterwards.”

Billie also talked a bit about her Tourette’s in a much recent interview this year with David Letterman on his Netflix show: My Next Guest Needs No Introduction. She shared how people react to her tics and how certain things sets the tics off, such as the lights.

“The most common way people react is they laugh. Because they think I’m trying to be funny. They think I’m doing a funny move. And so they go, like, “Ha!” And I’m always left incredibly offended by that, or they go “What?” and then I go, “I have Tourettes”“

She also talks about how other artists have shared with her that they also have Tourette’s:

“So many people have it that you would never know, a couple artists came forward and said, “I’ve always had Tourettes.” I’m not gonna out them, they don’t wanna talk about it. But that was actually really interesting to me, because I was like “You do?” Like, “What?”

You can watch learn more by watching the full interview Billie Eilish Opens Up About Her Tourettes Syndrome | My Next Guest Needs No Introduction | Netflix – YouTube.

Billie Eilish is currently on tour!

Picture taken of Billie on stage in the 02 by Joshua Buxton

On Saturday 11th June, one of our apprentices, Joshua Buxton, went to see Billie Eilish at the O2 in London, here is what he had to say about his experience:

“Billie’s concert on Saturday was the best concert I have ever been to, it was amazing seeing Billie in real life for the first time and singing along to all of my favourite songs as well. She also interacted with everyone in the audience as well as making sure that everyone was safe and enjoying themselves during the show, I had a great time and I cannot wait for the next concert!”

Bockett’s Farm Park Trip

On Saturday 23^rd of April we had a lovely day out to Bockett’s Farm as a way of celebrating National Pet Month. During our visit we discussed the importance of assistance animals for people with additional needs and disabilities as well as how animals has helped them.

At the farm we were allocated our own spacious barn where we had lunch and ATLAS were given yummy Easter eggs that had kindly been donated from ADP and Enterprise. Our barn could also be us as a safe space if needed. We were able to do lots of fun activities with the animals. Firstly, we walked around the farm where we saw horses, ponies, Shetland ponies and Giant Poitou Donkeys at the stable which was a fan favourite among ATLAS members as many of them didn’t want to leave theses friendly animals. We also went to the Animal Discovery Barn where we meet fluffy sheep’s, goats, llamas, pigs, and cows up close; lots of pictures were taken of these cute animals. After lunch we went on another farm walk where we discovered llamas and Swedish Fallow deer grazing peacefully in their paddocks. Then we went over to Little Hoppington were we met cute furry little friends which included rabbits, degu, pigs, and rats. During this time, we were able to have our animal encounter where we could pet pretty rabbits, a happy chicken, and a fun guinea pig. Since so many pictures were taken of the animals, we had a mini photography and video competition where the winner was able to buy something in the gift shop which was full of fun things to choose form. ATLAS members really enjoyed the trip as many of them find animals a personal comfort and relaxing to spend time with, some talked about their pets who help them to feel calm. 😊

If you would like more information or to join ATLAS, please email us at: ATLAS@surreycc.gov.uk where you join in fun on opportunities such as our trips.

Alternatively, you can message us on social media:

• Facebook
• Instagram
• Twitter

Some pictures from our fun trip 😊

One of the ATLAS members petting a adorable black rabbit

ATLAS member petting a sweet black rabbit

ATLAS member petting a sweet black rabbit

A photo of two friendly goats

Is there a link between epilepsy and autism?

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

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

“Autism is my secret weapon”.

Tom Stoltman after winning WSM 2022

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 3^rd in worlds ultimate strongman and 2^nd in the 2021 giants live finals.

Tom was diagnosed with autism when he was 8 years old and has spoken about his own struggles inside and outside of school. He has mentioned being bullied and worrying about what people would think if they found out he was autistic.

Tom and, his brother, Luke Stoltman competing and cheering each other on

Tom’s Autism – in his own words.

“I kept autism hidden”

“I didn’t want my mates to laugh at me”

However, he mentions that after telling his friends and others about his autism he felt a tremendous amount of relief after being accepted and supported by them. His friends made sure that he knew they accepted him for who he was and that it didn’t change a thing about their friendship which is truly phenomenal.

Luke Stoltman (Tom’s brother) has also talked about Tom’s experiences and growing up with him when he was younger. Referencing times that Tom would really struggle, he says,

“if mum went out shopping, he (Tom) wouldn’t stop crying till she came back” and that “he wouldn’t go anywhere by himself”

Tom has said that he found it difficult when something didn’t go as planned, as he would become fearful and potentially breakdown. This also wasn’t helped when others would say that it didn’t matter, as this just made him feel very different to his friends and others.

Tom saw a great change in his life when he was first invited to go the gym by his older brother Luke as this was the start of an incredible ongoing career in the internationally competitive arena of ‘strongman’ for both. Tom found comfort in pushing himself in the gym as he mentioned he didn’t get along with the more traditional side of school such as maths and English, but he truly thrived when it came to Physical education and many other sports.

Tom, and his brother, Luke Stoltman after Toms win at World’s strongest man 2021

What he has done for the awareness of autism–

Tom Stoltman has gone on many podcasts, interviews and has personally made videos on him and his brothers YouTube channel. Some of these are linked below. He has been quoted saying phenomenal things such as:

“Autism is my secret weapon” and that it should be

“Used as a superpower”, he has also talked about how that just because he is labelled that it doesn’t make him different. He strives to be an example to other autistic children and show them that they too will achieve incredible things.

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

Sensory Processing Disorder

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.

MENCAP Myth Busters and ATLAS

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.

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

Stephen Hawking and his life with Amyotrophic Lateral Sclerosis

Who is Stephen Hawking?

Stephen Hawking (Pictured Above)

Stephen Hawking was an English theoretical physicist (a scientist who uses maths, calculations, chemistry, and biology), cosmologist (a scientist who studies the universe) and author. He was also the director of research at the Centre for Theoretical Cosmology and the Professor of Mathematics at the University of Cambridge.

His life work includes the origins and structure of the universe, the discovery that black holes emits radiation as well as being an energetic supporter of quantum mechanics. Also, Stephen achieved profitable success with discussing his theories and cosmology in general.

Over the years, he wrote/co-wrote a total of 15 books. A few of the most noteworthy books that he wrote are A Brief History of Time, The Universe in a Nutshell, A Briefer History of Time, and The Grand Design.

What was his disability?

Stephen in front of a blackboard.

Even though he was born with no disabilities, in 1963, Stephen was diagnosed with an early-onset slow-progressing form of motor neurone disease which is known as amyotrophic lateral sclerosis (ALS) however, in the USA it is referred as Lou Gehrig’s disease. He had a life expectancy of 2 years, but he lived with the disease until he passed away in 2018.

The disease gradually paralysed him over the decades due to the nerves that controlled his muscles shutting down that led him to lose his mobility and had to use a wheelchair. After the loss of his speech, he communicated through a speech-generating device originally through use of a handheld switch and eventually by using a single cheek muscle.

How did the media accurately portray his life and disability?

Stephen Hawking in The Big Bang Theory (Left), The Simpsons (Middle) and Little Britain (Right)

Stephen had guest appearances on TV shows such as The Simpsons, Star Trek: The Next Generation, Futurama, and The Big Bang Theory. In 1992, a documentary about his life was released which was called A Brief History of Time.

He also hosted and narrated Genius, a six-part television series which tackled scientific questions that have been asked throughout history. Stephen was also featured in another biographical documentary film called Hawking in 2013.

Benedict Cumberbatch as Stephen Hawking in Hawking (2004)

He had two autobiographical movies about his life, the first one was called Hawking which premiered in the UK in April 2004 on BBC1, it had Benedict Cumberbatch playing him and focused on his early life as a PhD student at Cambridge University and the onset of motor neuron disease.

It was nominated for Best Single Drama in the BAFTA TV Awards in 2005. Benedict’s portrayal of Stephen Hawking was the first portrayal of the physicist on screen, and he won the Golden Nymph for Best Performance by an Actor in a TV Film / miniseries and received his first nomination for a BAFTA TV Award for Best Actor.

Eddie Redmayne as Stephen Hawking in The Theory of Everything (2015)

The second autobiographical movie about Stephen Hawking’s life was called The Theory of Everything which was released on January 1^st, 2015 in the UK. This time Eddie Redmayne was cast to play Stephen Hawking. The film focused on his early life and school days, his marriage to Jane Wilde, the progression of his ALS and his scientific triumphs.

The film received a lot of praise and positive reviews as well as receiving multiple awards and nominations. Most of the praise went to Eddie’s portrayal of Stephen as he spent months researching all of Stephen’s interviews as well as his accent and speech patterns to accurately portray him.

Was he an inspiration to the disabled community?

Stephan’s quote about disability.

Even though it took him a while to accept his disability, he started to accept the mantle of role model for people with additional needs and disabilities in the 1990s by lecturing and participating in various fundraising activities. He also signed the Charter for the Third Millennium on Disability with eleven other humanitarians.

In August 2012, Stephen narrated the “Enlightenment” segment of the 2012 Summer Paralympics opening ceremony in London. In 2014 he accepted the Ice Bucket Challenge to promote ALS/MND awareness and raise contributions for research. His children volunteered to accept the challenge on his behalf as he was advised not to have ice poured over him.

Autism and GCSEs

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 🙂 

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

What is Wonder about?

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 17^th, 2017. It received positive reviews from critics and audiences, with many praising the actor’s portrayal of the characters that were in the book including Jacob Tremblay who played Auggie in the movie.

How was Auggie’s disability presented in the novel / movie?

Auggie (played by Jacob Tremblay) in the film.

The disability that Auggie has in the novel and movie is called Treacher Collins syndrome. This is a rare genetic condition that affects the way a child’s face develops, especially the cheekbones, jaws, ears, and eyelids.

The book was inspired by a real-life encounter that the author’s son had with a child who had a similar disability to the one that Auggie has in the novel. This encounter as well as a song called “Wonder” inspired the author to write the book hoping that it could illustrate a valuable lesson.

Even though the movie was received well by viewers, there were heavy criticisms mainly from the disabled community about casting a non-disabled actor to play Auggie in the movie. He was made to look disfigured with extensive makeup and had to fake a speech impediment.

Jacob Tremblay did reach out to children with craniofacial differences to accurately portray their experiences, however the critics condemned the director for not trying hard enough to find an actual disabled actor to play Auggie.

How were certain topics tackled throughout the novel and movie?

From Left to Right: Jacob Tremblay as “Auggie,” Elle McKinnon as “Charlotte” and Noah Jupe as “Jack Will” in Wonder.

A major aspect that is presented in the novel and movie is that even though Wonder begins from Auggie’s point of view. However it soon switches to the perspectives of his classmates, his sister, her boyfriend, his best friend, and others.

The author did this as she wanted the reader to see how all the character’s voices converge to portray a community as it struggles with differences, as well as showing the true nature of empathy, compassion, acceptance, friendship, and kindness.

My final thoughts on Wonder

Even though the film is criticised for not trying to cast an actual disabled actor to play the role of Auggie which indirectly made the film less realistic, the story itself was really well written and won the hearts of everyone who has read the book and watched the film.

Rose Alying Ellis: the first deaf Eastenders character and Strictly Come Dancing contestant

Who is Rose Alying Ellis?

Picture of Rose in an interview

Rose Alying Ellis is a British actress who was born deaf and mostly relies on sign language, however she often performs using Sign-supported English to reflect her own communication style and make it clear for audiences to understand her. She first gained an interest in acting after taking part in a filming weekend that was run by the National Deaf Children’s Society. It was on that weekend that she met a deaf film director that would kickstart her entire acting career.

Rose first acting role in a 25-minute movie called “The End” that was an award-winning short movie. She took part in several stage productions and in a music video by the Vamps as well as being a part of other short films. Rose also had minor roles in certain TV shows such as Casualty before finally landing her big role in EastEnders as Frankie Bridge in 2020 and becoming the first deaf celebrity to be on Strictly Come Dancing and becoming the winner in 2021.

Her time on EastEnders

Rose as Frankie Bridge

EastEnders announced that Rose would be joining the cast as Frankie Bridge back in February 2020 and she wouldn’t make her on screen debut until a few months later. On the 18^th of May, she was introduced as Ben Mitchell’s friend after he was diagnosed with deafness after the “Boat Crash” Storyline. She became a series regular while taking part in a few storylines in EastEnders over the past 2 years as well as getting a job at the Prince Albert Bar. She recently took a break from the show to focus on Strictly, however it was announced that she will return in the beginning of 2022.

The producers and writers of EastEnders were proud to create the soap’s first deaf character. They wanted to see more representation of deafness in the media and the use of sign language in scenes marks the first time it was used in any Soap Operas by an actual deaf actress. EastEnders also received a lot of praise with featuring a story on hearing loss and introducing a new deaf character. Rose also talked about her excitement with joining the cast and having her character being portrayed as a positive, upbeat person who embraces the deaf community and raises awareness for the deaf people in the UK and British Sign Language as well as being the first deaf character on the soap.

Her time on Strictly Come Dancing

Rose and Giovanni after winning Strictly Come Dancing 2021

On the 19^th series of Strictly Come Dancing, Rose was one of the 15 celebrities that was confirmed to be taking part this year. This marked the first time that a Deaf Celebrity was on Strictly or on any other major shows such as I’m a Celebrity or Britain’s Got Talent. Rose won the hearts of the entire world and eventually went on to become the champions alongside her partner Giovanni Pernice. In an interview that she did before the show began, she said “I have a hearing aid, so I pick up some of the music and I can hear the beat. I can hear someone singing, but I can’t identify exact words. I also feel the vibrations” which made people believe that she will do well on the show.

During Rose’s time on Strictly Come Dancing, she rose more awareness to the deaf community as well as having some memorable moments such as scoring 40 points for their tango in week 6 which was the earliest “perfect score” in the show’s history. But in week 8, their Couple’s Choice dance featured a period of silence, this was included as a tribute to the deaf community, that same dance also won the TV Moment of the Year at the Heats Unmissable Awards.

How did she bring more awareness to the deaf community?

Since Rose won Strictly, she has raised more awareness of the deaf community helped to increase the number of people wanting to learn sign language: google searches for BSL have gone up by 448%. This would be beneficial as even learning a little bit of sign language can allow a hearing person to make a difference to the deaf community and help them understand one another. As well as that, she also shown how deaf people can do anything that they wanted to do.

Friendships

One of our ATLAS members has shared their experiences about building friendships.

how ATLAS has helped me to build my confidence to make new friends.

I have struggled with friendships since I was 3 years old, this is due to my autism, anxiety learning difficulties and sensory issues to name a few. I found it very lonely and found it hard to fit in and make the right friends and to keep healthy relationships.

Going to ATLAS has made me trust and gain more confidence for myself.  I have learned to make new friends and learned how to keep them.

I now have a lot of good friends to hang out with, we sometimes break up but then we make up again if we can and want to

I can make friends independently now.  I used to have support to help me make new friends and to keep them. I remember that break ups and friendships get better, they get better for everyone.

From an ATLAS member

Bullying

One of our ATLAS members shared their experience with bullying

I got badly bullied through secondary school, which led to all of my frustration to do lots of bad behaviour to other people and myself. The bullying would not stop because the staff were rubbish about it. The bullying made me very anxious, it made my anxiety really bad. I found it very hard to trust people even my friends because I did not want them to start bullying me as well as other people.

Bullying does improve if you tell the right people who you trust. I trust my therapist and so I told her about the bullying, she was very helpful to me. Always remember to stand up to the bullies.

The bullies picked on me because I was different and had my own struggles. What I say to the bullies is that if you don’t have anything nice to say don’t say anything at all. I also say can you please give me my own space and then I walk away from them and ignore the bullies.

Remember that you are much stronger than the bullies, don’t listen to them, they are just jealous of you and what you have. The bullies want to get a reaction so don’t give them one.

From an ATLAS member

My Meltdowns and Shutdowns

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

Tips and Tricks: Supporting Mental Health and Emotional Wellbeing with Additional Needs and Disabilities

Introduction

We found sharing our self-care tips and tricks with each other really helpful, especially during Covid. During the pandemic it has been even more important to think about how we are spending our time, as we’ve not been able to do our everyday ‘normal’ stuff, like socialising.

We hope that others find our thoughts and discussions around maintaining your mental health and wellbeing helpful!

The Importance of Self-Care

It has and continues to be important that you keep yourself active (however YOU define active), your mind active, and do things that you enjoy whilst staying safe. This can include any hobbies that you have like reading, drawing, listening to or making music, going out for a walk: anything at all that you think will help you.

It is also important to make sure that you are eating and drinking enough water every day as that has a massive benefit to improving your mental health and wellbeing.

Tips and Tricks

We’re all different for what we find helpful. Here are some of the activities ATLAS members use for self-care:

• Keep in touch with your friends because you don’t do much [during a pandemic].
• Call someone everyday – video call not just phone call or texting. Because if I don’t socialise for a while, I will forget how to socialise.
• Meditation and listening to music.
• Click and collect libraries.
• Making time for your hobbies
• Weighted blankets help a lot. Weight toys, weighted lap pad and weighted jacket.
• Baths and Showering.
• I have been trying to explore working with my senses. A lot of time with myself, music really helps because it is hard not hearing people’s voices. Without sound I will get tinnitus or hallucinate.
• White noises are also really good, especially with Autism I find big changes in volume different, so having noise all the time helps when people call me.
• Keeping bin by the bed.
• Using a bed desk if you can’t get out of bed so you are changing your work environment and home environment.
• I try and make sure I have a main event every day. I think it is an ADHD thing – I can’t do something when I am waiting for something planned.
• Routines!

Routines

We find that routines help to structure out our day-to-day life and activities. Here are some of the areas we use routines to help us with:

• Eat healthy meals.
• Meal plans.
• Have a timetable.
• Have a sleep routine.
• Similar sleep / wake up times.
• Light exercise.
• Having alarms / reminders.
• Post-it notes.
• Put reminders on phone.
• Write in a diary.
• Try and have different places in the house for different activities.
• Everyday, do something that you enjoy.
• Have structure in school / work.
• Have a time in the day where you step away from screens.
• Make exercise fun – put on music and dance or play a game that includes exercise like a virtual reality game (e.g. Wii Fit).
• Writing plans.
• Listen to music.

We find that routines are really helpful; they give us the information on what we want or need to be doing and when, as well as helping us to manage our time.

Importantly, routines help us to be more independent, reduce anxiety, and some of us have found it has also helped us build more confidence in ourselves!

Self-Care During Self-Care!

When developing routines, we feel it is important that you:

• Don’t pressure yourself.
• Take little breaks.
• Tell people close to you what you need, or how you feel.

Do you have any tips and tricks you would like to share? Please comment below!

Film Review: The Reason I Jump

This film is about non-verbal autism and is based on the book The Reason I Jump written by Naoki Higashida when he was 13 years old. Naoki is now 28 years old and will be 29 in exactly 28 days. Naoki is a non-verbal autistic person from Japan. The book was published in Japan in 2007. The English translation was published in 2013 by Keiko Yoshida and her husband, English author David Mitchell who have a son who is autistic and non-verbal. Keiko and David were very passionate about this book because they felt this is the only book which helped them to understand their son. Naoki’s book is invaluable to help understand severely autistic children and young people because it is the only book about autism written by an someone who is autistic and non-verbal.

This film is part documentary, part dramatisation and has an actor playing Naoki Higashida when he was a boy. The film shows Naoki walking along the beach and countryside explaining lots of feelings, emotions and sensory input from his surroundings. While this is being shown there is a narrator speaking the words of Naoki from his book, where he expresses his thoughts and feelings around his autism and non-verbal autism in general. Naoki’s account being read out in the film is incredibly powerful, extremely insightful and very thought-provoking. In my opinion the most powerful quote of Noaki’s is, “To live my life as a human being there is nothing more important than being able to express myself”.

Screenshot from the film

The idea of turning the book in to a film came from the parents of a teenager I’ll mention later on. His parents Stevie Lee and Jeremy Dear, were the producers of the film. They had read the book and it had transformed their understanding of their son. Without the parents of servery autistic children and adults this film would of not been made. The documentary part shows non-verbal autistic people from all over the world. From England they film Joss Dear a teenager who is severely autistic and can speak but speaks mainly by one word responses or repeating worlds from a long time ago that people have said, mainly his parents. Joss is very sensory, he enjoys blowing bubbles, bouncing on his trampoline and swinging very high on a swing. Joss is unable to explain why he does what he does and like what he likes. He just knows what he likes and people can see he likes it because he is showing experiences of pure joy. One of the reasons that makes the film so immersive and fascinating, is when the film shows autistic people from around the world doing what they enjoy. The words from Naoki that are in his book were said by the voice of the book Jordan O’Donegan. Where Naoki’s insight is invaluable because he describes the reason autistic people do what they do. His words describe Joss perfectly. When he is jumping, Naoki’s words are voiced over, while the footage of Joss being shown is a very good way of showing what incredible insight Naoki has given Joss’ parents and everyone else.

I really enjoyed the film and it taught me a lot, even as an autistic young person myself, about non-verbal autism, because I am fully verbal and only know a few people who are non-verbal. The cinematography is very good, shows some stunning views around the world and captures all of the people videoed in the film exactly. I feel one of the most important parts for people to take away from the film is about Naoki and two autistic friends from America who are non-verbal. These three young people have non-verbal autism however they are all very articulate and all use the letter board to communicate. They all have a very high level of understanding of themselves and the world around them. This makes the powerful point that non-verbal autism is not talked about much and still very much misunderstood. It is still very much the belief, that non-verbal servery autistic people with have a limited understanding and severe learning difficulties, which is not always the case. As these three in individuals show very powerfully. Another part I really liked was when Joss was looking over a fence at a mental green box with lots of cables in. He wanted to climb in but his dad told him not to because of course it’s too dangerous to climb in. It is incredible that Joss can hear the green box, without seeing it, from quite a distance. Listening and finding the green boxes has become a fascination for Joss and he can sit with his head to one of them for a long time.

A screenshot from the film.

I would recommend anyone with an interest in autism or additional needs to watch this film. It is a very unique film which is very thought provoking to all that see it. I would give this film a 5 out of 5 star rating because the director Jerry Rothwell did exactly what he set out to do. “As a film maker”, he said, that making a film about Naoki’s book would “offer a great opportunity to use the full potential of cinema to evoke intense sensory worlds in which meaning is made through sounds, pictures and associations as well as words.” He said by creating this film, “My hope is that the reason I Jump can encourage an audience into thinking about autism from the inside, recognising other ways of seeing the world, both beautiful and disorientating.” He also said, “I hope the film takes audiences on a journey through different experiences of autism, leaving a strong sense of how the world needs to change to be more inclusive.”

As seeing the film myself, I would say that’s definitely what I got out of the film and I think many others will too. This film will probably send you on a roller coaster of emotions from felling happy, stunned, sad, surprised and cross. At times the film is funny, sad, enlightening, inspiring, powerful and most of all, gives you a small insight of what it can be like for people who are autistic and nonverbal.

My Anxiety, ASD, and Me

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.

Dental and Oral Health with Additional Needs and Disabilities

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.

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

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.”

My ASD

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.

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 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.

Satoshi Tajiri: how autism inspired Pokémon

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.

Dyslexia

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.

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.

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

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!