At the age of 22 my life changed. I got what most would describe as a label, but I don’t.
If I did describe it as a label, I wear mine with pride.
I dislike the term ‘disability’ as it makes me feel like I’m lacking something or I’m less able than a ‘normal’ functioning person, so I call them my difficulties and additional needs. Because with hard work, help and support they can be over-come, and everyone is different any way.
I have Autism and I’m never afraid to admit it as it makes me who I am, so does my difficult past. No one should ever make you feel less of a person because you see the world differently or have difficulties fitting in.
One of my favourite quotes is “Another person’s craziness is another person’s reality” said by my favourite directors Tim Burton. This is my favourite quote because it’s so true and relatable to me. I now have this quote tattooed on me as a constant reminder that it’s ok to be who you are, whether you fit in or not.
I have made it a passion of mine to help and teach others by sharing my past and present life experiences and I take pride in where I have come from and where I’m going. My Autism has its challenges that some people don’t understand but I’m always working hard to help change their views and the stigmatism around additional needs and disabilities.
Over the years I have seen more acceptance of Autism and the challenges we face but there still is a lot of misunderstanding and judgement, its something I’m willing to help change and I will always challenge things as there is always more to be done.
Michael Fred Phelps is famous throughout the world for his legendary abilities whilst swimming. Phelps is, by far, the most successful Olympian of all time with 28 Olympic medals of which 23 are Gold. Phelps also has several world records relating to swimming and is the fastest human being alive in the water. Phelps has achieved this success for many reasons, not least being his own hard work and dedication, as well as having a body especially suited for high water mobility. But another factor that may have allowed Phelps to reach such success, much to the surprise of many, may be his ADHD. Phelps was diagnosed with the condition when he was a child, and some believe that this diagnosis played a role in making him such a world class athlete. In examining how ADHD has affected Phelps, we may learn to see Disability in a rather different light.
ADHD, or Attention Deficit Hyperactivity Disorder, is a condition that causes many behaviours that are unusual in the rest of the population. Commonly observed behaviours include restlessness, short attention span, and difficulty focusing. Many people consider ADHD to be purely negative, but many people with the condition themselves see it quite differently. For instance, ADDA, an self-advocacy group run by people with the condition, argue that ADHD is worthy of being celebrated. Whilst living with ADHD may present challenges, ADDA argues that the condition can in fact have its advantages and should be better thought of as simply a different way of having a mind. This might sound strange at first, but in Michael Phelps there may be an incredible example of this idea in action.
Historically, ADHD was understood as an inability to focus but more modern research suggests that it may in fact be a lack of control on what the brain focuses on. This is why ADHD people often exhibit a trait called ‘Hyperfocus’, where they focus intensely and singly on one thing, often for hours at a time. The theory goes that ADHD people often have a far stronger ability to focus than so called ‘Neurotypicals’ (those without ADHD) do. The problems come when an ADHD person has to focus on one thing when around them are ten or twenty distractions to drag their attention from. Most people have the ability to forcefully draw themselves back to the object of their focus and resist distractions, but without this many ADHD people struggle to stick to one thing long enough to make meaningful progress. With that said, picture child Michael Phelps in a swimming pool. Whilst in a classroom he might struggle to sit and do his work because of all the distractions, in the pool, with nothing to focus on but the water, his mind can intensely focus for hours on end. This allows Phelps to practice far longer and maintain focus far longer than his neurotypical coevals. Becoming a world star athlete requires spending many hours of each day practicing, but it also requires being able to remain attentive to technique even after hours of practice. Its possible that it is because and not in spite of, Phelps’ Disability that he has been able to take on the entire world in his chosen sport, and definitively triumph.
Michael Phelps Video: ADHD and What I would tell my Younger Self
Video Description: Michael Phelps talks to the camera about what he would tell his younger self and what it was like growing up with ADHD. Video has closed captions.
Did you know that Blind people sometimes need subtitles on videos?
Strange and nonsensical as it may seem, like a ‘how to speak French’ book being translated into French, this is a very real and very necessary accessibility requirement. This is because Blind users who watch online videos need any written words on screen, such as title cards or diagrams, to be transcribed so that their screen readers can read them as a transcript. Once explained this seems pretty clear, but why would a sighted person ever guess that this was a requirement? Not knowing this, someone writing subtitles might assume that just because the text was already on screen there is no need to write it out again in the subtitles. This is one of the many challenges to overcome when making online spaces accessible: not all accessibility requirements make sense to an able-bodied reader on first blush.
Another example is tables. If a table is laid out with labelled columns and labelled rows, the top corner of a table is often left blank. However, this is also a problem because often a screenreader reads across the rows one at a time, and the Blind person is creating a mental picture of where the different pieces go. If there is a section left blank, it can cause the columns to become out of step with the rows making the entire table impossible for the Blind person to properly parse. The solution to this is to mark the blank space with some alt text that the sighted user never needs to see but which allows a screen reader user to understand how the columns and rows fit together. Once again, a relatively simple fix that nevertheless may not have seemed necessary to many sighted people.
There are many other such examples, of things that may be vitally important for some Disabled users but are unfortunately often completely mystifying for able bodied content producers to understand. To face this problem, the key weapons in our arsenal have to be curiosity and open mindedness. Being curious about the reasons behind accessibility guidelines can help us gain a greater understanding of them. Meanwhile, being open minded to new information, even if it may seem strange or nonsensical to us at first, can allow us to avoid the pitfalls that can keep our online spaces from being accessible to all.
You may have heard of Sia’s new movie, Music, which was criticised before release for casting a non-autistic actor as a mostly non-verbal, autistic main character.
In the midst of Sia lashing out at criticism on social media, ATLAS members talked about how the casting of Music and the release trailer made them feel.
Many of the young people were disappointed that a potential opportunity for representation of girls with autism was overwritten by ableism:
Other young people were torn, because they felt that additional needs and disabilities have been successfully portrayed by actors without additional needs and disabilities elsewhere:
Overall, ATLAS members did not feel that the casting of ‘Music’ was positive.
The portrayal of autism in the media
Sadly, this film does not stand in isolation. The majority of ATLAS members reported that they felt the portrayal of autism in the media was either ‘not very good’ or ‘really terrible’.
There were mixed views around having non-speaking autistic characters in films, however there was a largely positive response to having female characters with autism.
Film is a powerful medium. When used correctly, it can empower and educate people. When somebody sees a film focused on autism, that may be their first exposure to the idea of autism or to an autistic person. This provides an opportunity for people to talk about and approach autism in better ways. Unfortunately, if the film misrepresents people with autism, then the ideas taken from a film could lead to autistic people being viewed and treated in negative ways.
two people with the same condition can have completely different experiences of it
the level of disability someone might experience can vary from day to day.
When people don’t understand the nature of fluidity in disability, it leads to stereotyping and contributes to how disabling society is. People with additional needs and disabilities are actively excluded based on assumptions and passively through it being ignored.
The most important thing to do is listen.
You don’t need to understand how an additional need or disability affects someone to accept it. To believe the individual. To accommodate.
I’m going to crush you with my love
Perhaps one of the most dangerous misunderstandings the film portrays is the use of prone restraint. Restraint should only be used if there is an immediate danger to that individual or others. When that danger has passed, restraint should stop.
ATLAS recently talked about the use of restraint in schools for managing the behaviour of young people with additional needs and disabilities:
Participation, participation, participation
The film Music being released at the same time as ATLAS is starting to look towards Autism Awareness Week (29th March to 4th April 2021) highlights to me the sheer importance of participation and listening to the voices of people who are experts in their own experience!
How different these events could have been if the voices shared around the release trailer of Music had been properly listened to and acted upon. How different the representation of minorities, vulnerable groups, discriminated groups, those the industry continuously promote stereotypes about could be.
Film can reflect society, but it can also heavily influence it and bring about positive change.
ATLAS members have some advice for anyone reading this who wishes to portray characters with additional needs and disabilities:
Written by Sabrina Peters, Additional Needs and Disabilities Participation Officer and edited by Rowan Foster, ATLAS member and Bank worker for the User Voice and Participation Team.
Harry Potter, the famous young wizarding student at Hogwarts School of Witchcraft and Wizardry took the world by storm and continues to be an important part of many people’s childhoods and lives. Some trivia for you:
Did you know that the actor who plays Harry Potter, Daniel Radcliffe, has Dyspraxia?
Dyspraxia is a developmental co-ordination disorder (DCD) that impacts the way the brain processes information, resulting in movement and co-ordination difficulties. A person’s organisation, memory, concentration and speech can also be affected. Up to 10% of the population are thought to have Dyspraxia, despite this, it is a relatively unknown condition.
From a young age, Daniel knew he struggled with certain things in life and had difficulties with school and his self esteem. As a result, his mother enrolled him in acting classes and from there his dream to be an actor was born.
At the age of nine, he made his first big break in the BBC’s David Copperfield, followed by a role in The Tailor of Panama. Then between 2001 and 2011 he captured the imagination of children, young people and adults across the globe with his portrayal of Harry Potter.
Daniel Radcliffe uses his fame to raise awareness of Dyspraxia, how it impacts individuals, and tackles the stigma that having an illness or disability means you cannot achieve your dreams.
It has been difficult for Daniel to shake off his portrayal of Harry Potter, the boy who lived, when looking for other roles as an actor. However, he has gone on to win numerous awards. He doesn’t act for the money, fame, or to be the best, he is living his dream.
“Before I came to participation groups, I didn’t talk.”
“Like this [conversation] was a no go … and then I went to my first session and then like, you couldn’t stop me talking, because I realised I was allowed to speak and I was allowed to know things.”
“Professionals don’t know that we don’t know we’re allowed [to speak and know things]. They make us feel like we can’t have knowledge of ourselves, which is what we’re meant to have anyway!”
“That’s been my biggest part in this [participation], is knowing myself, instead of knowing what they want me to know. Without this, I wouldn’t have been able to spread my voice. I would not have a say in terms of what I struggle with.”
Recently ATLAS members have been discussing what new starters to the group might want to know before their first session!
In a discussion about what could be included in a new starter pack, the group decided it should include information about the impact of ATLAS: “The Big Picture”.
Together, members made a mind map to express what they thought “The Big Picture of ATLAS” was. Below, some of the young people agreed to share their lived experiences in relation to the impacts mentioned.
The mind map
The mind map reads:
Opens the discussion
Helping professionals understand the experience of the young people
Promoting the right of people with additional needs and disabilities
Making Surrey more accessible
Surprise professionals with our points of views
Helps young people be seen
Brought about massive change in services brought about us
Share our expertise on our additional needs and disabilities
Empower young people
Meet and speak with other people with additional needs and disabilities
Quotes from young people
When working with the UVP Team:
The impact of participation on professionals:
Young person with Autism at university:
If you would like to read some of the feedback and consultation work that member’s of ATLAS work on, you can find out more on our ‘Monthly News‘ page!
Please check out our ‘Get Involved‘ page if you are interested in joining ATLAS.
Alternative Provision is education outside school for pupils who don’t attend mainstream school for reasons which might include being excluded, behaviour concerns, mental health or illness. Examples of Alternative Provision include Pupil Referral Units, the Alternative Learning Programme (ALP), Short Stay Schools and Access to Education (A2E).
Surrey County Council are redesigning the strategy for Alternative Provision and the User Voice and Participation Team created two online surveys to get the views of children, young people, parents and carers. The surveys were open from 23rd October 2020 – 17th November 2020. We received responses from 65 children and young people and 78 parents and carers. Below are the main things that respondents told us they would like to see in Alternative Provision:
Additional Mental Health Support
38% of children and young people said that mental health was one of the main barriers that affected them staying in mainstream education. Parents and carers also expressed that mental health was a significant issue that they felt needed attention. Therefore, more mental health support is needed to help children and young people to remain in education. Children and young people need to be able to access support easily and in a timely manner to ensure that their mental health issues are addressed quickly, and their education is not affected.
This is what some of the respondents had to say:
‘I could benefit by having someone to talk to whenever I’m feeling down or nervous, someone who could help me when I’m stressed or struggling with work etc’ Young person
‘Someone in the room knowing about my mental health and actually taking the time to help me, without cutting corners’ Young person
‘Support from a doctor or mental health professional as needed’ Parent/Carer.
Additional Support for those with Special Educational Needs and Disabilities
44% of parents and carers said that undiagnosed special educational needs and disabilities (SEND) or lack of support for those with SEND was the main barrier to their child or young person remaining in mainstream education. A number of children and young people also said that they felt their additional needs were a barrier to remaining in education. We therefore need to ensure that children and young people with SEND are diagnosed in a timely manner and that enough support is put in place to help them manage their education. Many parents and carers recognise that the cause of this is often due to a lack of funding for schools which is an area that they feel needs to be addressed.
This is what some of the respondents had to say:
‘People to help with understanding additional need even if people can’t see them’ Young person.
‘Struggle on daily basis – waiting assessment for ADHD – find classrooms very distracting’ Young person.
‘Teachers need more training and support in managing children with additional needs who perhaps do not have an EHCP in place’ Parent/Carer.
Adaptable Teaching Styles & Understanding Needs
A number of respondents were frustrated at the ‘one size fits all’ approach that they feel is often in place in education. It is important that teaching staff have a good understanding of their students’ individual needs and can adapt their teaching styles so that nobody gets left behind.
This is what some of the respondents had to say:
‘Teachers educated in different styles of pupil engagement and schools being adaptable to support this’ Parent/Carer.
‘Tasks explained in different ways if the first way is too difficult to understand’ Young person.
When children and young people feel like they are falling behind in education, it can cause them a lot of anxiety and, due to class sizes, it is not always possible for the teacher to spend as much time as they need with individual pupils. Respondents from both surveys said that it would be beneficial to have more 1:1 support in place to help children and young people remain in education.
This is what some of the respondents had to say:
‘More 1 to 1 support earlier in schooling to prevent phobia from developing and placement to fail’ Young person.
‘Time out of the classroom and more 1-1 support’ Parent/Carer
Local Alternative Provision
Although some children and young people said that they would be happy to attend alternative provision that was in a different town, more than half said that travelling a long way was likely to affect their attendance. Similarly, over 70% of parents and carers felt that travelling a long distance would impact on their child or young person’s ability to attend e.g. due to anxiety, tiredness etc. We therefore need to ensure that we have enough Alternative Provision available across Surrey to avoid young people having to make unreasonable journeys.
This is what some of the respondents had to say:
‘The fact that I had to wake up every day and travel 2 hours a day to school and back was exhausting’ Young person.
‘This has happened to my son as he was travelling 45 minutes each way in a taxi. He is now unable to attend due to fatigue and anxiety and a reduced timetable is not an option due to the travelling time’ Parent/Carer.
Other things that respondents said they would like to see from Alternative Provision included:
Outdoor space – ‘‘I need space to run and climb when I feel stressed’ Young person.
Small classes and separate rooms that students can go to if they need some time out – ‘A comfortable setting, not just a classroom with different areas if I needed to be alone rather than surrounded by lots of people’ Young person.
Nice buildings – ‘They don’t have a great space to work from. They are teaching in rundown premises which need updating and, compared to local schools, that doesn’t seem fair’ Parent/Carer.
Kind teachers – ‘Good fun teachers that are more of a friend but can be professional when they need to be’ Young person.
If you would like to read more about the results of the surveys, please see the full reports below:
Dyslexia is an Additional Need and Disability (AN&D).
5% to 10% of the population have it. It is the most common specific learning difficulty. It is something that runs in families and is a lifelong disability. It is something you learn strategies to help you cope with, so people think you outgrow it, but you just learn to live with it.
Dyslexia is not just about muddling letters: it is when you struggle with spelling, confuse your letters (for example b and d), or may have difficulties reading, as you are not able to recognise sounds. Sometimes dyslexics come across as lazy or slow, as some struggle with following instructions.
Dyslexics find problem solving more easily than others – they think out of the box. Many dyslexics have high IQs and are incredibly clever people. A myth is that dyslexics see letters moving around when black print is on white paper. That is visual stress. Although a lot of people with dyslexia have it, you can have visual stress without dyslexia.
Coloured overlays are not a cure for dyslexia, they help people with visual stress.
How to learn spellings
Depending on how your brain works, there are various spelling strategies, I found. Rainbow writing works the best for me. You learn each syllable in a different colour and then put it to one word.
If you begin to remember spellings this way, try look, cover, write, check – you literally do as it says.
Staying on track with written work.
I find it hard to plan my work in my head and get it written down. I can talk all about a project, what I am going to do. However, when it comes to getting it on paper, I just can’t do it. A tool I have learnt is to ‘Mind map’ my ideas.
Start with the topic in the middle, then ideas coming off for each chapter and ideas off of each of those until I have the base details down, you can do each area in different colours if it helps. Then number them so you know what order to write it in.
General Day to Day Challenges
Because my brain has to work so hard, I can find it hard to concentrate for long periods of time and then when I get a break, I do tend to go a little crazy – just to unwind and relax.
My friends sometimes get angry with me, as I can take things very personally and then I get upset – it’s just how my brain works.
I’m not very organised, so I need help packing my school bag (amongst other things), otherwise I will forget things I need. Don’t give me a list of instructions, my brain can only cope with 2 instructions at a time, otherwise I will forget almost everything you have asked me to do – write it down, so I can do it and tick it off.
People used to call me stupid, thick, lazy or idiot – I now know that’s not true!
Things I Am Good At
I am a really good problem solver, I come up with solutions that many people wouldn’t have considered, I think out of the box – this is a skill that many businesses are looking for, so I am hopeful this will help me be successful when I am older.
Maths is an area that I do really well with, I think it’s my problem solving that helps me out.
Many people comment that I am kind and caring, I believe this is because, how I see the world and others, I know how I get treated, so ensure that I don’t treat people that way.
I have a higher than average IQ, many of the world’s most successful people are dyslexic – Richard Branson, Albert Einstein, our Health Minister – Matt Hancock, Tom Cruise and many more.
Before I found the SYAS team, I wouldn’t take part in a class assembly, however since I have been a member, it has boosted my confidence and I am more than happy to speak up and speak my mind, without worrying about how others see me.
The positives and negatives of Dyslexia
My brain works much harder than most people’s
I’m not lazy, I just need more time to process what you are asking
I take things really personally
You need to give my instructions in small steps
I think outside the box
I’m really good at maths
I’m a good problem solver
I have a higher than average IQ
I tend to do the right thing
Some of the world’s most successful people are Dyslexic
Thanks to ATLAS – I’m happy to do public speaking!