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Additional Needs and Disabilities Personal Story SEND Sensory Processing Disorder

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

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.

ATLAS Logo

Who is ATLAS and what do they do?

ATLAS (Accept, Teach, Listen, Access, Support) is a participation group run by the User Voice and Participation team also does similar work as Mencap, by empowering children and young people (Their parents and carers involved too) with additional needs and disabilities to share their opinions about the services they use.

This is what some of their objectives are:

  • To raise our voices on important topics from the perspective of young people with additional needs and disabilities, living in Surrey (UK)
  • To provide feedback on and co-produce Surrey services for young people with additional needs and disabilities
  • To create a safe space for young people with additional needs and disabilities to share their experiences confidentially  

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

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

ATLAS sessions take place (Virtual and in person) on the first and third Wednesdays of each month, the location of the sessions is in Epsom and Woking.

Atlas Ambassadors

ATLAS also has ambassadors, these ambassadors help by raising the voices of all the ATLAS members and supporting with how the groups are run.

If you want to know more information about the groups, then go on to this link:

ATLAS Groups – ATLAS Surrey (surreyatlas.uk)

In order to achieve their objects, ATLAS have made selected a couple of areas that need to be prioritised, these are some of the areas that they have made a priority:

Ableism, Stigma and Discrimination

  • ‘Able-Bodied’ should not be the goal
  • Power of language and attitudes
  • Media Representation
  • Need for co-production and professionals with lived experience
  • Self-description

Autism

  • Acceptance
  • Awareness
  • Emergency services
  • Helping professionals to understand how to work with autistic people -Co-morbidity with mental health

If you want to read about other areas that ATLAS have made a priority, then go on to this link:

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

Action cards and their importance

Action cards are themes and topics that young people raise as important issues that need immediate action.

An action card is raised when four or more young people share similar feedback or think that it should be raised on a specific topic.

The UVP team then step in and share what the young people have said to the relevant services, and in return receive a response from them within two months.

Action cards can only be closed with the consent of children and young people.

If you would like further information about Mencap and ATLAS, then you can follow them on social media, their social media will be listed down below.

Mencap

Website:

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

Facebook: Mencap – Home | Facebook

Twitter: Mencap (@mencap_charity) / Twitter

Youtube: Mencap – YouTube

Linkedin: Mencap | LinkedIn

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

ATLAS

Website:

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

Facebook: Surrey ATLAS – Home | Facebook

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

Youtube: User Voice & Participation – YouTube

Twitter: ATLAS Youth Advisors (@SurreyAtlas) / Twitter

Categories
Achievement Additional Needs and Disabilities Celebrities Inspirational People Uncategorized

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 1st, 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.

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

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 🙂 

Categories
Additional Needs and Disabilities Book Review Film Media SEND

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

What is Wonder about?

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

Wonder was published in 2012 and it was written by R.J. Palacio. Wonder tells the story of 10-year-old Auggie Pullman, a boy with facial differences and his experiences dealing with the condition as he adapts to regular school life. It comes with ups and downs that involves different forms of bullying.

However, there are also brighter aspects as the book also explores other themes such as friendship and compassion as well as Auggie’s journey and self-confidence throughout the book.

The book was popular enough with readers to receive three additional books that relates to the story called Auggie and Me, 365 of Wonder and We’re all Wonders.  The novel also gained a film adaptation that was produced by Lionsgate.

The film adaptation of Wonder was released on November 17th, 2017. It received positive reviews from critics and audiences, with many praising the actor’s portrayal of the characters that were in the book including Jacob Tremblay who played Auggie in the movie.

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

Screenshot of the film wonder, close-up of Auggie's face. Prosthetics have been used to give the actor a facial difference.
Auggie (played by Jacob Tremblay) in the film.

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

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

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

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

How were certain topics tackled throughout the novel and movie?

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

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

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

My final thoughts on Wonder

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

Categories
Additional Needs and Disabilities Celebrities Deafness Inspirational People Media

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

Who is Rose Alying Ellis?

Close up of Rose Ayling Ellis laughing during an interview
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 Ayling Ellis in character as Frankie Bridges 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 18th 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 Ayling Ellis and Giovanni Pernice holding the strictly come dancing trophy together
Rose and Giovanni after winning Strictly Come Dancing 2021

On the 19th 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.

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ADHD SEND Uncategorized

Current Action Cards for Surrey – January 2022

What is an Action Card:

Action Cards are themes and topics that you as young people raise as important issues that need action!

When 4 or more young people raise similar feedback or decide that an action card should be raised on a particular topic, an Action Card is raised.

The User Voice and Participation (UVP) Team then have 2 months to raise the voices of the young people and get a response from the relevant services to feedback for review.

Action Cards are only closed with the consent of children and young people.

This year, we are dividing Action Cards into National and Local Action Cards. We have done this so that we can categorise each action card and know which Action Cards relate to services specifically in Surrey and those that relate to the whole of the UK.

What is a Local Action Card?

A local action card relate to topics young people would like to stop, start or change in Surrey specifically.

What is a National Action Card?

A national action card is similar to the local action cards however it can relate to various different services around the UK.

What will we be doing this Year?

Going into 2022 we have a total:

  • 3 Local Action Cards
  • 6 National & Local Action Cards
  • 4 Local Question Cards
  • 1 National Question Card.

Local Action Cards:

Action Card 176:

  • As young people with additional needs and disabilities, ATLAS would like Special Schools to be renamed Specialist Schools, because Special is a euphemism for disability.
  • “Euphemisms are put on terms that are regarded badly by society.”
  • “I tend to use the term specialist when talking about schools instead of special. They are targeted for a specific thing, so they are specialist, not special.”
  • ATLAS Call for Action is: “Surrey Special Schools” to be renamed “Surrey Specialist Schools.”

Action Card 180:

  • As young people with additional needs and disabilities, we would like more information pre-and-post-16 transition including mental health support and what accommodation provision is available in Surrey for all young people with additional needs and disabilities, so that we know what options are available to us when we make decisions about our accommodation.
  • ATLAS Call for Action is: A booklet to be created for all young people in Surrey going through post 16 transition. The booklet will include post 16 information including mental health support and accommodation options.

Action Card 181:

  • As young people with additional needs and disabilities, we would like more information on what transport provision is available in Surrey for all young people with additional needs and disabilities trying to access education, work, and social activities, so that we can plan our routes and make sure that the choices we make during post-16 transition are accessible to us.
  • ATLAS Call for Action is: A webpage to be created to provide all travel options available for young people in Surrey.

Question Cards:

Question Card 18:

  • As young people in Surrey with Additional Needs and Disabilities, we want to know if there are any ‘Buddy Schemes’ during post 16 transition, so that we feel supported by peers and are able to build positive relationships.

Question Card 26:

  • As young people in Surrey with additional needs and disabilities, we would like to know whether there are protections in place to prevent letters containing private information from not sent to our parental homes, where there are safeguarding concerns. So that we feel comfortable knowing our thoughts and feelings are being contained.

Question Card 30:

  • As young people with Additional Needs and Disabilities in Surrey, we would like to know if there is a link between Additional Needs and Disabilities with dental hygiene/problems, and if so, what support is there?

Question Card 37:

  • Is there a Crisis Text Line for young people with selective mutism/non-verbal?

The User Voice and Participation Team are really looking forward to supporting ATLAS’ action and question cards. We are also looking forward for what new action and question cards 2022 will bring!

Categories
Additional Needs and Disabilities Education Mental Health Uncategorized

Learners’ Single Point of Access (L-SPA)

What is the L-SPA?

The Learners’ Single Point of Access (L-SPA) offers help and support to children and young people within Surrey who have a problem, concern or needs about their development or progress. L-SPA offers help to anyone to the age of 25.

What the L-SPA does

L-SPA assures they will give children and young people the right support or intervention at the right time so they can help you meet your learning developmental milestones. The L-SPA provides you access to information and advice from a team of professionals from education, health and social care; aiming to answer your call within 20 seconds. The L-SPA will not replace any existing referrals to services for children. If you have existing support or help from another service, the L-SPA will support and help alongside.

How to access the L-SPA

The L-SPA is a phone service that runs from 9am to 5am, Monday to Sunday all year round except on bank holidays. You can call the L-SPA on 0300 200 1015. Alternatively, you can go to their website and fill out a form as a parent, practitioner or as a child or young person. If you are not accessing any learning services other then L-SPA, the L-SPA can help you to get support from another service.

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 Anxiety Health Mental Health Self-Care Social

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!

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 Health SEND

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.

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

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

Michael Fred Phelps is famous throughout the world for his legendary abilities whilst swimming. Phelps is, by far, the most successful Olympian of all time with 28 Olympic medals of which 23 are Gold. Phelps also has several world records relating to swimming and is the fastest human being alive in the water. Phelps has achieved this success for many reasons, not least being his own hard work and dedication, as well as having a body especially suited for high water mobility. But another factor that may have allowed Phelps to reach such success, much to the surprise of many, may be his ADHD. Phelps was diagnosed with the condition when he was a child, and some believe that this diagnosis played a role in making him such a world class athlete. In examining how ADHD has affected Phelps, we may learn to see Disability in a rather different light.

“I simply couldn’t sit still, because it was difficult for me to focus on one thing at a time”

– Michael Phelps, from his book Beneath the Surface

ADHD, or Attention Deficit Hyperactivity Disorder, is a condition that causes many behaviours that are unusual in the rest of the population. Commonly observed behaviours include restlessness, short attention span, and difficulty focusing. Many people consider ADHD to be purely negative, but many people with the condition themselves see it quite differently. For instance, ADDA, an self-advocacy group run by people with the condition, argue that ADHD is worthy of being celebrated. Whilst living with ADHD may present challenges, ADDA argues that the condition can in fact have its advantages and should be better thought of as simply a different way of having a mind. This might sound strange at first, but in Michael Phelps there may be an incredible example of this idea in action.

Historically, ADHD was understood as an inability to focus but more modern research suggests that it may in fact be a lack of control on what the brain focuses on. This is why ADHD people often exhibit a trait called ‘Hyperfocus’, where they focus intensely and singly on one thing, often for hours at a time. The theory goes that ADHD people often have a far stronger ability to focus than so called ‘Neurotypicals’ (those without ADHD) do. The problems come when an ADHD person has to focus on one thing when around them are ten or twenty distractions to drag their attention from. Most people have the ability to forcefully draw themselves back to the object of their focus and resist distractions, but without this many ADHD people struggle to stick to one thing long enough to make meaningful progress. With that said, picture child Michael Phelps in a swimming pool. Whilst in a classroom he might struggle to sit and do his work because of all the distractions, in the pool, with nothing to focus on but the water, his mind can intensely focus for hours on end. This allows Phelps to practice far longer and maintain focus far longer than his neurotypical coevals. Becoming a world star athlete requires spending many hours of each day practicing, but it also requires being able to remain attentive to technique even after hours of practice. Its possible that it is because and not in spite of, Phelps’ Disability that he has been able to take on the entire world in his chosen sport, and definitively triumph.

Michael Phelps Video: ADHD and What I would tell my Younger Self

Video Description: Michael Phelps talks to the camera about what he would tell his younger self and what it was like growing up with ADHD. Video has closed captions.

About Theo!

“Hi! My name’s Theo Greiner and I work in the Web and Digital Services Team at Surrey County Council. I’m also on the Autism spectrum and use that experience to write articles on accessibility on behalf of the Council to get people thinking about Accessibility and Disability. I write in hopes of shifting people’s ideas about Disability towards ones that treat Disabled people with the respect and agency they deserve. I hope you enjoy them.”

Categories
Additional Needs and Disabilities Autism Celebrities Inspirational People SEND

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

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

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

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

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

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

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

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

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

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

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

Spina Bifida is a birth defect of the spinal cord; this is what Aaron has and is why he is on a wheelchair and has very limited use of his legs.

Aaron ‘Wheelz’ Fotheringham has never let being on a wheelchair limit what he wants to do. When he was a small boy, he did anything anyone else his age could do, he just had to figure out how to make it work for him.

“When you say you are ‘in’ a wheelchair it’s like saying that you are confined to it. I’m ‘on’ my wheelchair, I ride it like a skater ‘on’ his skateboard.”

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

When he first ever received his first walker, he was off and running. Following on from the walker came crutches, which he got the hang of quickly. He would put on a Superman cape and blast down the hall on crutches believing, as any other 4-year-old, that he could fly. At age 8 Aaron go his first wheelchair which change his life for the better and opened new adventures for Aaron.

The age of 8 was when Aaron started riding at skateparks. One of his older brothers Brian is a BMXer. Before Aaron started having a go, he had been going to the park with Brian and their dad for weeks, but Aaron would just watch. Like any other child Aaron found the first time scary and he fell hard, but he was never one to give up just because it wasn’t easy. So, he tried again and from then on, he was hooked.

Aaron wants to change the world’s view of people on wheelchairs and to help everyone see their own challenges in a new way. You do not have to be on a wheelchair or handicapped to be inspired by what he is able to do and has achieved.

“I was able to go further than I could’ve ever dreamed of – all because of my wheelchair”

Over the years, Aaron has challenged himself to discover even more difficult stunts. In 2005, he achieved a mid-air 180-degree turn. On July 13th, 2006, he landed the first wheelchair backflip. Four years later August 26, 2010 he landed the first ever double backflip. As if this isn’t enough, on February 9th, 2011, he landed his very first front flip in New Zealand, and on August 25, 2012, he stunned Brazilians by jumping and successfully landing a 50-ft gap off the Mega Ramp in his chair. He is a 4-time winner of the Wheelchair Motocross (WCMX) World Championships and has also performed the first Wheelchair Flair/backflip 180, which he posted online.

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

After posting that first ever backflip on the Internet, life has changed for Aaron; he has travelled globally, both performing and speaking. He has attended summer camps for disabled children as a coach/mentor, and he has been featured in magazines, newspapers, and sports television. Aaron enjoys showing young kids with disabilities that a wheelchair can be a tool, not a restriction. He loves helping younger children learn how to handle their chairs in new and different ways and teaching them a trick or two. Someday he hopes to design and build the most wicked chair in the world.

Aaron “Wheelz” Fotheringham – The Story

Video description:

A youtube video documentary about Aaron’s life and rise to fame. There are a sequence of clips of Aaron talking to the camera, learning and landing a number of different wheel chair stunts, attending movie premiere’s and enjoying his life.

Video Transcript:

“I wanna be be cool! I wanna be cool!” A few people can be heard cheering and then the sound of the wheelchair crashing into the ramp. “Dude I’m alive”, people cheer. More crashing sounds.

“I’m Aaron Fotheringham, most people call me Wheelz. I was born with Spina Bifida. The doctors didn’t think I’d really be independent at all or be able to sit up or do anything on my own: need to be assisted my whole life.

“But I didn’t let that stop me from keeping up. When all my friends would be riding their bikes around, I would hop on my wheelchair and chase them all around the streets.”

“Since those days my life has changed so much. Somehow I have been able to travel the world from country to country. I’ve been able to meet my idols and people who inspire me, perform in live shows in front of thousands of people and basically go further than I ever could have dreamed, all because of my wheelchair”. People cheering.

“Um, ok, well I was adopted when I was born to an awesome family in Los Vegas. They’re not my biological parents, but pretty much they’re everything, you know, they took care of me since birth and given me everything I have. Had to be a big trial on them and a big risk ’cause adopting a kid with Spina Bifida is, you know, like buying a car that’s got a lot of problems, a lot of work. Just also having to go in, either having a kidney problem or problem with my spine.”

“Well when I first started going to school, and like, they would always ask if I wanted to be put into adaptive PE with other kids on wheelchairs and I was always against that, because I though well I’m just like every other kid, I’m just on a wheelchair. So I would always fight and make them put me in regular PE. The coaches were always pumped because I would always be there and just want to do whatever the other kids were doing. So I think that was an important part was just having, you know, no one treat me any different. And my parents would always, if I would ask for help or something, they would say: your legs aren’t in pain at all, you can do it yourself. So they would just treat me like they would treat any of my other brothers.”

“You know, I think your disability is mostly in your head. You’re only as disabled as you feel. Just always having fun with it and never seeing it as a true disability. Like I don’t wake up in the morning and think: oh crap I’ve got to ride a wheelchair today. It’s just, like you get up and put your shoes on, I’m hopping onto an awesome wheelchair.”

“It’s pretty sweet to be able to help people look at their wheelchair as something just besides a medical device and it can actually be something really fun. Like, honestly there’s just wheels stuck to my butt, how can that not be fun?”

“We’re just here at one of the nitro circuit premiere’s getting ready to see the movie for the first time. Never been on the red carpet before, I feel like I should wipe my wheels before I got on the red carpet.”

Singing.

“Wheelz is fun, he’s really cool. He’s got the most dry sense of humour you could ever imagine. First time I saw him, he hit the ground and he’s laying there like: I’ll never walk again! and I was like so, I didn’t know whether to laugh, I didn’t know. He’s just always being awesome, I can’t be awesome all the time, I can’t even walk but that’s kinda what we got in common so we’re good.”

Background music and cheering.

“Not too long ago I went to my first x games and I’d watch Travis and I saw him up close for the first time and I was star struck. And I waved at him and he waved back at me. Saw Travis’s double back flip and I was like I wanna do a double back. And then a couple of years later they call me up and I’m doing shows with them and then I’m landing a double back flip. It’s just, you know, it’s crazy, I’m scarred to dream too insane because everything seems to be coming true.”

Background music.

“Those are always the best moments of my life.”

Cheering.

Dude, my teeth are missing again! You lost your teeth? Again! I had so much fun knocking my teeth out the first time that I can’t help it!.

Categories
accessibility Additional Needs and Disabilities Blind IT SEND

Subtitles for the Blind: Unexpected Outcomes of Accessibility

Did you know that Blind people sometimes need subtitles on videos?

Strange and nonsensical as it may seem, like a ‘how to speak French’ book being translated into French, this is a very real and very necessary accessibility requirement. This is because Blind users who watch online videos need any written words on screen, such as title cards or diagrams, to be transcribed so that their screen readers can read them as a transcript. Once explained this seems pretty clear, but why would a sighted person ever guess that this was a requirement? Not knowing this, someone writing subtitles might assume that just because the text was already on screen there is no need to write it out again in the subtitles. This is one of the many challenges to overcome when making online spaces accessible: not all accessibility requirements make sense to an able-bodied reader on first blush.

Another example is tables. If a table is laid out with labelled columns and labelled rows, the top corner of a table is often left blank. However, this is also a problem because often a screenreader reads across the rows one at a time, and the Blind person is creating a mental picture of where the different pieces go. If there is a section left blank, it can cause the columns to become out of step with the rows making the entire table impossible for the Blind person to properly parse. The solution to this is to mark the blank space with some alt text that the sighted user never needs to see but which allows a screen reader user to understand how the columns and rows fit together. Once again, a relatively simple fix that nevertheless may not have seemed necessary to many sighted people.

There are many other such examples, of things that may be vitally important for some Disabled users but are unfortunately often completely mystifying for able bodied content producers to understand. To face this problem, the key weapons in our arsenal have to be curiosity and open mindedness. Being curious about the reasons behind accessibility guidelines can help us gain a greater understanding of them. Meanwhile, being open minded to new information, even if it may seem strange or nonsensical to us at first, can allow us to avoid the pitfalls that can keep our online spaces from being accessible to all.

About Theo!

“Hi! My name’s Theo Greiner and I work in the Web and Digital Services Team at Surrey County Council. I’m also on the Autism spectrum and use that experience to write articles on accessibility on behalf of the Council to get people thinking about Accessibility and Disability. I write in hopes of shifting people’s ideas about Disability towards ones that treat Disabled people with the respect and agency they deserve. I hope you enjoy them.”

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

Not ‘Music’ to Our Ears

Contents

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

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

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

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

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

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

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

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

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

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

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

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

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

The portrayal of autism in the media

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

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

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

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

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

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

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

Disability is fluid

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

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

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

Disability is fluid:

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

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

The most important thing to do is listen.

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

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

I’m going to crush you with my love

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

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

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

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

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

Participation, participation, participation

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

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

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

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

“Let people be themselves.”

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

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

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

“Show people how I suffer.”

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

Categories
Additional Needs and Disabilities Celebrities Dyspraxia Inspirational People

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

Harry Potter, the famous young wizarding student at Hogwarts School of Witchcraft and Wizardry took the world by storm and continues to be an important part of many people’s childhoods and lives. Some trivia for you:

Did you know that the actor who plays Harry Potter, Daniel Radcliffe, has Dyspraxia?

Dyspraxia is a developmental co-ordination disorder (DCD) that impacts the way the brain processes information, resulting in movement and co-ordination difficulties. A person’s organisation, memory, concentration and speech can also be affected. Up to 10% of the population are thought to have Dyspraxia, despite this, it is a relatively unknown condition.

From a young age, Daniel knew he struggled with certain things in life and had difficulties with school and his self esteem. As a result, his mother enrolled him in acting classes and from there his dream to be an actor was born.

“I was having a hard time at school, in terms of being crap at everything, with no discernible talent.”

At the age of nine, he made his first big break in the BBC’s David Copperfield, followed by a role in The Tailor of Panama. Then between 2001 and 2011 he captured the imagination of children, young people and adults across the globe with his portrayal of Harry Potter.

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

Daniel Radcliffe uses his fame to raise awareness of Dyspraxia, how it impacts individuals, and tackles the stigma that having an illness or disability means you cannot achieve your dreams.

It has been difficult for Daniel to shake off his portrayal of Harry Potter, the boy who lived, when looking for other roles as an actor. However, he has gone on to win numerous awards. He doesn’t act for the money, fame, or to be the best, he is living his dream.

“I’m lucky enough to have a job that I love, and a relatively down-to-earth lifestyle.”

Categories
Additional Needs and Disabilities Autism Personal Story SEND

My ASD

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
Additional Needs and Disabilities Personal Story Self-Description SEND

ATLAS: The Big Picture

Recently ATLAS members have been discussing what new starters to the group might want to know before their first session!

In a discussion about what could be included in a new starter pack, the group decided it should include information about the impact of ATLAS: “The Big Picture”.

Together, members made a mind map to express what they thought “The Big Picture of ATLAS” was. Below, some of the young people agreed to share their lived experiences in relation to the impacts mentioned.

The mind map

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

The mind map reads:

  • Challenging assumptions
  • Activism
  • Personal empowerment
  • Job opportunities
  • Improving services
  • Opens the discussion
  • Helping professionals understand the experience of the young people
  • Promoting the right of people with additional needs and disabilities
  • Making Surrey more accessible
  • Surprise professionals with our points of views
  • Better understanding
  • Helps young people be seen
  • Brought about massive change in services brought about us
  • Share our expertise on our additional needs and disabilities
  • Empower young people
  • Empower community
  • Meet and speak with other people with additional needs and disabilities

Quotes from young people

When working with the UVP Team:

“When you introduce yourself to professionals, they’re like “Oh, I didn’t realize you had an opinion on this”. They seem to be surprised that people who have additional needs and disabilities care about it and know a bit about it.”

The impact of participation on professionals:

“I think people really underestimate the impact that lived experience can have because it’s literally something you have to think about every day. If it is a doctor diagnosing you … they did a couple of lectures. You have it every day so you have to learn about it and they just seem surprised that you could have the motivation to want to know what it going on with you.”

Young person with Autism at university:

“Right now I am learning clinical psychology and I cannot function in my module because it’s like I’m reading about all these kind of typical things they expect to someone on the autistic spectrum to have and I’m like, this is a load of like absolute rubbish.”

Closing statement:

“Don’t assume and if you are going to make assumptions assume ability”


If you would like to read some of the feedback and consultation work that member’s of ATLAS work on, you can find out more on our ‘Monthly News‘ page!

Please check out our ‘Get Involved‘ page if you are interested in joining ATLAS.

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

A week in the life of an ATLAS member

Recently ATLAS members have been discussing what new starters to the group might want to know before their first session!

A member of the group who joined recently suggested that having some information about what the group could be like or what was involved would have been really helpful.

Together, members made a mind map to express what they thought a week as a member may include!

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

The mind map reads:

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

If you would like to read some of the feedback and consultation work that member’s of ATLAS work on, you can find out more on our ‘Monthly News‘ page!

Please check out our ‘Get Involved‘ page if you are interested in joining ATLAS.

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

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.

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

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

Staying on track with written work.

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

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

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

General Day to Day Challenges

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

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

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

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

Things I Am Good At

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

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

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

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

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

The positives and negatives of Dyslexia

The word Dyslexia is draw out
Drawing of the word Dyslexia

Negatives:

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

Positives:

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