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

Additional Needs and Disabilities support at Colleges in Surrey

Introduction

ATLAS recently raised the below Action Card:

As young people with additional needs and disabilities, we would like more information on what study support is available in Surrey for all young people with additional needs and disabilities, so that we know what options are available to us when we make decisions about our education.

Support available

Following from your Action Card, we asked the Preparing For Adulthood Team at Surrey County Council what support colleges in Surrey offer. This is what we found out!

Nescot College

Nescot College offers a wide range of expert support, from specialised help with student finance to mentoring and professional counselling for personal, social or family problems.

All the services are free and available to anyone. To get this support you will be assessed at college after talking to your tutor.

When you join Nescot you can visit their website to apply for the support that applies to you. Or you can talk to your tutor or staff at Nescot and ask how to apply, or if they can help you apply.

For more information, visit their student services webpages:

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

Brooklands College

Brooklands College offers help from staff such as, progression mentor, your tutor, the counsellor, a member of the safeguarding team. They can also give you ways to help yourself or they can signpost you to services that can offer help and support. When you join the Brooklands college you can visit their website and see how to apply for the support that applies for you. Or you can talk to you tutor or staff at Brooklands and ask how to apply or if they can help you apply.

For more information, check on Brookland’s webpages on student support:

East Surrey College

East Surrey College offers additional support that’s offered to students who have a learning difficulty or disability. If you have a statement of additional needs, a learning difficulty assessment or an EHCP, you will need to provide any of these to get support from the college. The college provide access to assistive technology for exams, dyslexia and dyscalculia and will provide or recommend strategies to enable you to make independent progress in learning. The college has specialist staff to support those with hearing or visual impairments, as well as speech and language needs. Students needing more support will often be allocated a specific Learning Support Assistant to work with them ensuring consistency throughout the college day. There is also an Autistic Spectrum Support Group every 2 weeks, where students can socialise and try out new activities.

For more information, check on East Surrey colleges webpages on support for students:

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

Farnborough College of Technology

Farnborough College has dedicated additional learning support such as, learning support workers, specialist tutors and key workers. Staff at the college work to create a range of support programmes for specific learning difficulties including dyslexia, dyspraxia, and dyscalculia. The support offer can provide 1-1 support, study and assignment workshops, exam access arrangements and assistive technology and equipment support. The college also helps with language and communication needs, whether its producing speech, understanding and using language or having specific communication difficulties.

For more information, check on Farnborough’s webpages on additional learning support:

SEND Local Offer

The SEND local offer aims to bring together useful information between education, health and social care within their website. You can find information, advice, guidance and a range of local service’s who provide children and young people with Special Educational Needs and Disabilities (SEND).

For more information, check on SEND Local Offer webpages on the support they offer:

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

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

My Meltdowns and Shutdowns

Definitions

Meltdown – a response to an overwhelming situation that includes signs of distress.

Shutdown – where a person may withdraw from the people and environment around them. They may need their own space and time to process.

My Meltdowns

I don’t like meltdowns because when I used to have really big, long and bad meltdowns I used to say a lot of mean things, tell lies, say horrible things to others and myself.

Meltdowns make me look like I am refusing to do something or am reluctant to do something when I’m not – I’m in a meltdown.

I used to run off and hide, but I don’t do that anymore unless it is for a fun activity where people aren’t going to get worried. I used to also climb up trees and bushes to hide from people when I was having a meltdown, or hide underneath something, but I don’t do this anymore. I now cover my face with my hands, people understand I’m not hiding to be rude, I just need some alone time.

I don’t like to make people worried.

I like to walk, jog or run-in safe areas when I am having a meltdown to feel safe – I still do this.

Recently I have been having less meltdowns than I used to, which are also smaller than they used to be. I have been having a lot of shutdowns recently.

My Shutdowns

I have had a lot of shutdowns in the evenings since I finished college for summer holidays. In the last 7 weeks I have had a shutdown almost everyday.

During the summer holidays I have been going to a lot of clubs, and I have been having a lot of 10 to 40 minutes shutdowns at the clubs that I have been attending in the mornings and the afternoons. Sometimes I feel sorry for the staff who try to help me, but I also worry that they may call someone over and make it an incident.

A lot of people ask me if I am okay when I am having a shutdown, but I am not always able to answer, especially when I am really anxious. There have been a lot of transitions lately that are really busy and loud, which have not helped my anxiety. Some mornings I am too anxious to go into clubs and the staff I have good relationships with have to help me enter the site.

Some days I cry a lot when I am really anxious. People might worry because I might not seem like myself and then ask me a lot of questions at once about how I am and how I have been. Sometimes it can be overwhelming to talk about these things; sometimes I’m not ready to talk about it. When this happens, they might get into my personal space. I worry if people who don’t get tested regularly for Covid-19, get into my personal space.

Sometimes the behaviours of other children and young people at clubs and activities can cause me to be really anxious. Especially bad or violent behaviour.

When I am tired, I find things harder to do and possibly more overwhelming. This can make me cry and I don’t always immediately know what it is that has led to the problem.

How I manage overwhelming situations

Some of the ways I notice that I am becoming overwhelmed is when:

  • There are loud noises
  • There is a difficult situation
  • I see someone breaking the law or doing something dangerous
  • I get too hot
  • I am stressed

Some of the ways I look after myself when I am overwhelmed:

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

Film Review: The Reason I Jump

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

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

Screenshot from the film the reason I jump. Young boy is looking up towards the sky. He is wearing a red raincoat. In the background there are pylons.
Screenshot from the film

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

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

A screenshot from the film the reason I jump. Everything is in tones of blue. You can see a young man in the forefront looking to the right. A behind him another man looking the same way.
A screenshot from the film.

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

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

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

My Anxiety, ASD, and Me

What is Anxiety?

Anxiety makes you more anxious and nervous. It is harder for you to talk about your feelings and emotions. Sometimes it is hard to talk about your thoughts and what you are thinking about.

When you’re anxious it is really hard to talk to people because you don’t know who to trust. With anxiety, I find it really hard to trust people.

Things that cause me anxiety

There are a lot of things that cause me anxiety. For example:

  • Meeting new people and seeing a new place.
  • Emergency services
    • Because hospitals and the emergency services are scary.
  • Emergency vehicles
    • For example, police, ambulance, fire engine, flashing lights.
  • Loud noises, alarms, vehicles, fireworks, thunder, heavy rain, wind, screaming and shouting.
  • Professionals knowing about my life and personal information and not knowing who will be told & who they may tell.
  • Changes.
    • Cancelling or changing appointments with little notice or no notice.
    • Changing schools.
      • Different primary and secondary school.
    • too many changes happening at once.
    • home schooling.
    • Moving to college and having to make new friends.
  • Negative things on social media.
  • The news.
    • particularly about covid.
  • Covid in general because you can’t see people and places.
  • The Dark.
    • I can’t see what is happening around me.
    • I can’t see what people are doing.
  • Fights and arguments because you don’t know what’s happening.
  • Small tight spaces: I feel stuck and scared.
  • People that are hurt or sad.
    • Sad knowing that my friends have anxiety and bad mental health.
    • My friends seeing me struggling.
  • Being adopted.
    • Not understanding the whole process.
    • Not meeting family members that I don’t know.
  • Scary times from the past: being threatened to be kidnapped as a kid.
  • Being touched
    • You don’t know if they’re going to hurt you or not.
  • Intrusive thoughts.
    • They can be hard to ignore.
  • Not understanding what my disabilities mean: Autistic Spectrum Disorder (ASD), Learning Difficulties, Sensory Processing Disorder (SPD), Anxiety, Sensory Issues.
    • Because I have SPD it takes me more time to process and understand information.
    • My meltdowns and shut-downs.
    • Sometimes I am non-verbal.

Managing anxiety

There are many coping strategies you can use to help with anxiety. I prefer some strategies to others. Ones that I like are:

  • Hugs (: This is a big one!
    • Hugs are great because they’re very soothing and relaxing.
    • I like the feeling of touch; it calms me down quite quickly.
    • I mainly like hugs from White Lodge staff.
  • Fidget Toys. Ones that I like include:
    • Stretchy bands.
      • When you stretch the bands, they help to relieve frustration.
    • Chew toys.
      • They help relieve the anger inside my mouth.
  • Exercise.
    • Walking and yoga.
      • Walking is really calming, and yoga really soothes you and makes you want to go to sleep.
    • The fresh air makes you happy.
  • Talking to people who I trust.
    • For example, staff at White Lodge.
  • Soft toys.
    • They’re nice to cuddle.
  • Adrenaline rush.
    • For example, from a roller coaster!
  • Baths.
    • You can have a bath bomb and a candle in there, put some classical music on, it’s really nice!
    • Washing products that smell really nice also make you smell great and clean.
  • Colouring-in.
    • Colouring in between the lines makes you feel really relaxed.
  • Cooking.
    • Mixing ingredients, for example, is very calming.
  • Animals.
    • My dog really helps me! And my fish!
  • Make-up or face paint
    • I find putting these on a really nice sensory experience.
    • It is also very creative and a good way to express yourself.
  • Medication
    • I have a chewing gum with hemp in it that really helps me.
    • Lozenges and calming sweets can also be good.
  • Crying.
    • When I am in a shut-down, I find crying helps me feel better.
  • Going to a library.
    • It is quiet and peaceful. It is nice to go in.
    • Looking through the books, choosing one and then reading is a good way to distract yourself.
    • When I am in a bad mood, but not in a meltdown, I often ask to go to the library.

When you are anxious it can be hard to make decisions. So, it can also be difficult to use coping strategies when you are anxious because you don’t know which one to use and which one will help you the most. Sometimes when you are anxious you can also forget about the strategies!

Using coping strategies

I find it easier to use coping strategies when I have a meltdown when people tell me to use them. But when I have a shutdown, I find it difficult. When I need to use my coping strategies, I remember them by:

  • Using lists.
    • I have two: an outdoor and an indoor one.
  • My mum, or the people around me, remind me.

When I am having a shutdown I like it when people check-in with me and ask what they can do to help me. I find that helpful. It is helpful when people try and ask what is wrong. When I am having a shut-down I find people giving me hugs helpful, but please ask me permission before you do!

  • I would like it if the professionals that work me had a better understanding of shutdowns and what I need when it happens.

If emergency services have to work with me when I am anxious, having a meltdown or a shutdown, I would like them to:

  • Not talk over each other.
    • It’s hard to understand what they are all saying.
  • Not ask so many questions.
    • They try to rush you to answer.
  • To communicate using sign language (BSL/Makaton) or flash/single cards.
    • When I am in a shutdown I find it easier to use a different way of communicating.
  • Understand that they are not someone that I trust to share my personal feelings with.
    • I know that they are not all trained medical professionals, for example the police.
  • Use less force and be more gentle if they need to touch me.
    • Give me more warning if they need to touch me, for example use a countdown.
  • Not make threats to try and make me do things.
Categories
Additional Needs and Disabilities ADHD Autism Dyslexia Dyspraxia LGBT+ Neurodiversity Personal Story Self-Description SEND Social Stigma

Neurodiversity: Gender and Sexuality

Introduction and defintions

It is well noted through observation and research that there is more gender diversity in neurodiverse people than neurotypical people. As gender and sexuality are social constructs, there is speculation that this relationship is due to the fact that being neurodiverse means you are less likely to adhere to cultural and social norms.

You may be wondering what all these terms mean:

  • Neurodiverse/Neurodiversity/Neurodivergent – variation in in the human brain. This term is used by people to express that their brains are wired differently due to having neurological conditions and/or disorders: ADHD Autism, Dyspraxia, Dyslexia, etc.
  • Neurotypical – this is a relatively new term that is used to describe people whose brain develops and functions in ways that are considered ‘normal’. It is the opposite of Neurodivergent.
  • Gender Diversity – is a measure of how much people’s gender differs from cultural or social norms due to their sex at birth.
  • Sexuality – is all about how someone identifies themselves in relation to the gender or genders that they are attracted to.
  • Social Construct – something that only exists as a result of humans agreeing that it exists.
  • Cultural and Social Norms – rules or expectations based on the shared beliefs of different groups of people that guide behaviour and thoughts.

Talking about experiences and difficulties of the LGBT+ community is extremely important to ATLAS members. This is not only because ATLAS want to be strong allies and raise the voices of minorities, but because a number of members are also part of the LGBT+ community themselves.

“When somebody refers to me as female, I think ‘oooh not really but close enough’. It took me a long time to realise that I don’t experience femininity and being female in the same way [as the people around me] because I am not really female.”

ATLAS member
Close up of a palm with the LGBT+ rainbow flag painted on it with a heart drawn in black biro on top of it.
Image by Sharon McCutcheon

Autism and Gender

ATLAS members reflected on how they weren’t told about the relationship between Autism and gender diversity when they were diagnosed:

“When you are autistic you experience gender in a very different way … no one mentioned this to me when I was diagnosed”

ATLAS member

I am nonbinary, I don’t talk about it much because it doesn’t come up that much. It’s very common with Autism but no one told me!

ATLAS member

How masking impacts self-discovery

Masking is a survival technique that is used by people with Autism to hide behaviours that may not be accepted by the people around them. This is often achieved by learning to display neurotypical behaviours. Ultimately, masking results in having to hide the true self to be protected from negative consequences.

“Masking is a trauma response and trauma screws with everything. Trauma affects people with autism a lot more. I don’t know where the mask ends and where I begin.”

ATLAS member

ATLAS members raised that as a result of masking, it can be difficult to work out who they are:

“When I was younger I would take behaviours I would see and mask using them. A lot of people I was around were heteronormative. It makes it hard for me to understand, I can’t always get my head around what I am or what I like because I have masked for so long.

ATLAS member

As a result some members felt unable identify with labels, which could help them find support from peers and communities:

I went to a university LGBT+ society event and someone came up to me and asked: Well what are you? Why are you here? I don’t know what I am because I find it really hard to process.

ATLAS Member

Labels

“Some people find labels helpful and some people don’t.”

ATLAS member

“For me it was empowering to have my labels, it helps me to break everything down to feel like I have control. But labels are limited in how they explain me. Something I found hard to understand was ‘comphet’: How much is me wanting to be loved? How much is me wanting men to validate me? and how much of it is attraction?”

ATLAS member

Comphet stands for compulsory heterosexuality. This is where heterosexuality is assumed and enforced by society.

“On a call I do at uni they put their pronouns in their Zoom names.”

ATLAS member

ATLAS members and staff loved this idea: members and staff are now invited to put their pronouns in their Zoom names if they want to!

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

Family Stigma

“People in my family are really against it [LGBT+].”

ATLAS member

Whilst family relationships can be extremely important for the wellbeing of children, young people and young adults, unfortunately stigma can lead to bullying, rejection and internalised stigma.

“My dad was very girls belong in the kitchen, seen and not heard. He wanted me to be his little girl and when I didn’t he came to disown me for it. It makes it hard for me to accept who I am. I have never felt comfortable with who I am or how I am. So when I hear people who are able to find themselves, I just don’t understand how they can make those decisions. I was told I couldn’t be gay or bisexual because I was just masking.”

ATLAS member

“Fortunately, I know how some people have a good accepting family, really only my mum accepts. My dad and my sisters think I am going through some sort of phase and that I’m probably stupid.”

ATLAS member

Final thoughts

“I think it is interesting how people have such different experiences.”

ATLAS member

Neurodiverse people, people with Autism, people with disabilities are just as different and individual as neurotypical people, people without an additional need or disability. Talk to us, listen to our experiences and ideas: we are experts in our perspective and have a lot to say!

To make sure that the voices of children, young people and young adults with additional needs and disabilities in the LGBT+ community are heard ATLAS will be starting drop-in sessions to provide a safe space and a platform for voices to be raised.

Categories
Additional Needs and Disabilities Autism Personal Story

Advocating for Change: Autism Awareness and Acceptance

At the age of 22 my life changed. I got what most would describe as a label, but I don’t.

If I did describe it as a label, I wear mine with pride.

I dislike the term ‘disability’ as it makes me feel like I’m lacking something or I’m less able than a ‘normal’ functioning person, so I call them my difficulties and additional needs. Because with hard work, help and support they can be over-come, and everyone is different any way.

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

“Why fit in when you were born to stand out”

Dr. Seuss

I have Autism and I’m never afraid to admit it as it makes me who I am, so does my difficult past. No one should ever make you feel less of a person because you see the world differently or have difficulties fitting in.

One of my favourite quotes is “Another person’s craziness is another person’s reality” said by my favourite directors Tim Burton. This is my favourite quote because it’s so true and relatable to me. I now have this quote tattooed on me as a constant reminder that it’s ok to be who you are, whether you fit in or not.

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

I have made it a passion of mine to help and teach others by sharing my past and present life experiences and I take pride in where I have come from and where I’m going. My Autism has its challenges that some people don’t understand but I’m always working hard to help change their views and the stigmatism around additional needs and disabilities.

Over the years I have seen more acceptance of Autism and the challenges we face but there still is a lot of misunderstanding and judgement, its something I’m willing to help change and I will always challenge things as there is always more to be done.

Awareness and Acceptance.

Categories
Additional Needs and Disabilities Autism Celebrities Inspirational People SEND

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

Chris was born in Southampton in 1961. His big interest in wildlife seemed to form before he was even able to speak. His parents say that he liked to crawl across their lawn looking for ladybirds and fish for tadpoles and mosquito larvae in an old baby’s bath set in the corner of the garden.

When he discovered a song thrushes’ nest just before his 12th birthday his interest in birds first began to grow. The Observer’s book of Birds Eggs became his Bible and Chris became a young egg thief. In 1974 he met a teacher at his school, John Buckley, who immediately redirected young Chris’ interest in egg collecting towards scientific examination instead.

Chris found nests, counted eggs and chicks and made maps of all their locations and within a couple of years he started his first proper scientific study – The Population and Breeding Density of Kestrels in the Lower Itchen Valley. This was written up in his last year at secondary school and he won the Prince Philip Zoology Prize a couple of years later. A bright young scientist and nerd in training he studied Kestrels, Shrews and Badgers in his teens and undergraduate days at the Zoology department of Southampton University.

As a young adult and postgraduate, he began taking still photographs and trained as a wildlife film cameraman. The photography continues with exhibitions and invitations to judge prestigious competitions, but the camerawork gave way to presenting. Chris began with the award winning ’Really Wild Show’ in 1986 and has been working ever since.

In his late 30s Chris suffered with Meniere’s disease which is a disorder of the inner ear that is described as having episodes of feeling like the world is spinning, ringing in the ears and hearing loss. In 2003, at the age of 42, he began seeing a therapist after the death of his dog. As his work with the therapist concluded in 2005, Packham was diagnosed with Asperger syndrome, aged 44.

“For all autistic people it mustn’t any longer be about what we can’t do, it’s got to be about what we can do”

On 17 October 2017 Chris Packham released a documentary on BBC 2 about his life growing up and his Asperger’s, this program is called Asperger’s and me and can still be watched on BBC iPlayer. After receiving so many responses to the program he replied back to his fans and the messages he received with a letter that can be found and read on his website https://www.chrispackham.co.uk/news/aspergers-and-me-thank-you

“And that’s the message that I wanted to land to parents, friends, colleagues and a large number of isolated, unhappy, confused children, teenagers and adults. We don’t need a cure, there is nothing wrong with us – we are different. And that difference has enormous biological and social importance.”

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

Not ‘Music’ to Our Ears

Contents

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

You may have heard of Sia’s new movie, Music, which was criticised before release for casting a non-autistic actor as a mostly non-verbal, autistic main character.

In the midst of Sia lashing out at criticism on social media, ATLAS members talked about how the casting of Music and the release trailer made them feel.

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

Many of the young people were disappointed that a potential opportunity for representation of girls with autism was overwritten by ableism:

“It feels as if someone who has not experienced being autistic is mimicking and taking the mick out of struggles we have and there are so many potential actors and actresses which would have been happy to be casted in the movie. There is the idea that Sia was not able to put the right environment for an autistic actress to function when filming but if it’s not working for them and the movie is about autism and disability inclusion and awareness then you should change the environment. I feel it is especially difficult to watch the trailer as a girl with autism seeing a neuro typical girl attempt to portray autism in girls, which unfortunately is a very underrepresented thing in the media and is often not acknowledged as much as autism in boys. I feel that the opportunity to bring about awareness for autism in girls has been crushed by such a horrifically degrading movie of a neuro typical attempting to show you what it’s like to live as an autistic person when they have had no actual experience of it.”

Other young people were torn, because they felt that additional needs and disabilities have been successfully portrayed by actors without additional needs and disabilities elsewhere:

“I think it is difficult. Ideally an autistic character should be played by an autistic actor as this will really help raise awareness, and potentially open up these opportunities to people with additional needs. However, I also think it is not a negative thing a non-autistic actor playing this role, as long as the portrayal is accurate and realistic.

A good example is the American TV show ‘The Good Doctor’. A non autistic actor (Freddie Highmore) plays an autistic savant character in the show, and I know his portrayal of the character has received a lot of praise and has also helped to raise awareness, as well as showing a powerful autistic role model through television, despite the fact that the actor does not have autism.”

A still from the TV show 'The Good Doctor' showing the main character Dr. Shaun Murphy played by Freddie Highmore.
Dr. Shaun Murphy from ‘The Good Doctor’

Overall, ATLAS members did not feel that the casting of ‘Music’ was positive.

“Autistic actors are already marginalised and it’s harder for them to get roles. Especially when that autistic character has already been written by non-autistic people, I think it’s disrespectful to not use an autistic actor. It’s unhelpful, and often inaccurate.”

“It’s something that affects me daily and they get to take off their ‘autism mask’ and carry on normally, plus they profit from all of this. It also would be far more accurate with an autistic actor who actually knows the ins and outs of being autistic.”

The portrayal of autism in the media

Sadly, this film does not stand in isolation. The majority of ATLAS members reported that they felt the portrayal of autism in the media was either ‘not very good’ or ‘really terrible’.

There were mixed views around having non-speaking autistic characters in films, however there was a largely positive response to having female characters with autism.

Survey responses about the portrayal of autism in the media.
Survey results from Microsoft Forms on the portrayal of Autism in the media.

“I think it’s so important to have the diversity of autism shown in the media. Too many people think it’s straight white boys lining up cars but it’s so much more than that.”

“The way autism is currently represented in the media is not very diverse. Usually cishet white men who like maths. Or it’s demonised. It’s very often talked about from the perspective of ‘autism parents’ rather than autistic people.”

Film is a powerful medium. When used correctly, it can empower and educate people. When somebody sees a film focused on autism, that may be their first exposure to the idea of autism or to an autistic person. This provides an opportunity for people to talk about and approach autism in better ways. Unfortunately, if the film misrepresents people with autism, then the ideas taken from a film could lead to autistic people being viewed and treated in negative ways.

“It could be great it has amazing potential to raise awareness to the struggles of autistic people by using our own experiences and using us for the information rather than charities and companies like Autism Speaks which believe that autism needs a cure. So if the information that the film and the character was based off of was found through talking to autistic people and if they cast an autistic person then the film would have amazing potential to widen people’s knowledge of the autism spectrum and and make the representation of autism in the media more positive.”

Disability is fluid

Clem Bastow beautifully describes Maddie Ziegler’s performance in her Guardian Article:

“there are elements of truth to Ziegler’s performance, but even a stopped clock gives the right time twice a day”

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

Disability is fluid:

  • two people with the same condition can have completely different experiences of it
  • the level of disability someone might experience can vary from day to day.

When people don’t understand the nature of fluidity in disability, it leads to stereotyping and contributes to how disabling society is. People with additional needs and disabilities are actively excluded based on assumptions and passively through it being ignored.

The most important thing to do is listen.

You don’t need to understand how an additional need or disability affects someone to accept it. To believe the individual. To accommodate.

“They’ll decide what your ability is, and then you will be prescribed to that and then you’re not encouraged to go beyond that.”

I’m going to crush you with my love

Perhaps one of the most dangerous misunderstandings the film portrays is the use of prone restraint. Restraint should only be used if there is an immediate danger to that individual or others. When that danger has passed, restraint should stop.

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

ATLAS recently talked about the use of restraint in schools for managing the behaviour of young people with additional needs and disabilities:

“Children and young people shouldn’t be in a position where they are treated like criminals.”

“I believe that restraint should not be used, ever, unless a person is presenting an imminent risk to themselves or someone else. As in, they are not able to stop themselves. Honestly, not even then, usually you can use de-escalation techniques.”

Participation, participation, participation

The film Music being released at the same time as ATLAS is starting to look towards Autism Awareness Week (29th March to 4th April 2021) highlights to me the sheer importance of participation and listening to the voices of people who are experts in their own experience!

How different these events could have been if the voices shared around the release trailer of Music had been properly listened to and acted upon. How different the representation of minorities, vulnerable groups, discriminated groups, those the industry continuously promote stereotypes about could be.

Film can reflect society, but it can also heavily influence it and bring about positive change.

ATLAS members have some advice for anyone reading this who wishes to portray characters with additional needs and disabilities:

“Let people be themselves.”

“Building the character and the movie off of ideas and experiences from people with that additional need and/or disability. Actually taking their experiences and using them in it and it’s easily possible to cast someone as an actor or actress with those additional needs playing the character with those additional needs.”

“They’d have to consult multiple different people with the same disability and not romanticise it or demonise it.”

“I would want them to actually consult with people who have those additional needs and involve them in every step of the process – writing, casting, acting, publishing.”

“Show people how I suffer.”

Written by Sabrina Peters, Additional Needs and Disabilities Participation Officer and edited by Rowan Foster, ATLAS member and Bank worker for the User Voice and Participation Team.

Categories
Additional Needs and Disabilities Autism Personal Story SEND

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.

Categories
Achievement Additional Needs and Disabilities Autism Personal Story SEND

The power of participation: getting your voice heard

“Before I came to participation groups, I didn’t talk.”

“Like this [conversation] was a no go … and then I went to my first session and then like, you couldn’t stop me talking, because I realised I was allowed to speak and I was allowed to know things.”

“Professionals don’t know that we don’t know we’re allowed [to speak and know things]. They make us feel like we can’t have knowledge of ourselves, which is what we’re meant to have anyway!”

“That’s been my biggest part in this [participation], is knowing myself, instead of knowing what they want me to know. Without this, I wouldn’t have been able to spread my voice. I would not have a say in terms of what I struggle with.”

Categories
Autism Celebrities Inspirational People SEND

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.