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Additional Needs and Disabilities Education News SEND Surveys

ATLAS Consultation: SEND and Alternative Provision Green Paper

On Wednesday 29th June, ATLAS is taking part in consultation about the SEND and Alternative Provision Green Paper alongside the Council for Disabled Children. All young people who take part will receive a £15 voucher for their time and expertise!

If you are a young person with additional needs and disabilities living in Surrey (UK) and want to be involved, get in touch with us through social media or email us: ATLAS@surreycc.gov.uk

What is the SEND and Alternative Provision Green Paper?

The SEND and Alternative Provision Green Paper is a Review into the SEND system that the Department for Education made in 2019, they did this to understand why the system was struggling, despite the potential and vision of the Children and Families Act 2014 as it was becoming financially unsustainable and wasn’t always resulting in positive outcomes. In March 2022 the Review was published as a Green Paper paving the way for change.

Green Papers are consultation documents produced by the Government that looks at several key areas in the system that need change and make proposals for that change. These include national standards, role of schools, education, health and care plans, accountability, and support. The aim of the Green Paper is to allow people both inside and outside Parliament to give the department feedback on its policy or legislative proposals.

What is the SEND Review?

The SEND Review looks at ways to make sure that the SEND system is reliable, high quality and united across education, health, and care. It also makes sure that money is being spent fairly, efficiently, and effectively as well as making sure that the support available to children and young people is sustainable in the future. This is being led by the Department for Education, working closely with other government departments / partners in education, health, and social care.

What is their next step?

A consultation phase will be taking place where a group of stakeholders will have an opportunity to review and reflect on the proposals, giving families frustrated by the existing, complicated, and bureaucratic system of support the opportunity to shape how a new system will work in the future and give them confidence that their local school will meet their children’s needs so they can achieve their full potential.

3 key challenges facing the SEND and alternative provision system.

  • Navigating the SEND system and alternative systems is not a positive experience for too many children, young people and their families.
  • Outcomes for children and young people with SEND systems or in alternative ones are consistently worse.
  • Despite the continuing investment, the system is not financially sustainable.

Detailed proposals in the SEND and alternative provision green paper include:

The consultation will be looking at the following proposals:

  • Setting new national standards across education, health and care to build on the foundations created through the Children and Families Act 2014, for a higher performing SEND system.
  •  A simplified EHCP through plans to make them more flexible, supporting parents to make informed choices with a list of appropriate placements tailored to their child’s needs meaning less time spent researching for the right school.
  • Councils to introduce ‘local inclusion plans’ that bring together early years, schools and post-16 education with health and care services, improving oversight and transparency through the publication of new ‘local inclusion dashboards’ to make roles and responsibilities of all partners within the system clearer for parents and young people, helping to make better outcomes.
  • A new national framework for councils to match national standards and offer clarity on the level of support expected and put the system on financial stability in the future, changing the culture and practice in mainstream education to be more inclusive and better at identifying and supporting needs, including earlier intervention and improved support.
  • Improving workforce training through the introduction of a new SENCo NPQ for school SENCos and increasing the number of staff with an accredited level 3 qualification in early years settings.
  • A reformed and integrated role for alternative provision (AP), with a new delivery model in every local area focused on early intervention. AP will form an integral part of local SEND systems with improvements to settings and more funding stability.

More Information

For more information see the Council for Disabled Children’s Website and find a summary of the SEND review on the Department for Education’s gov.uk webiste.

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News

Bockett’s Farm Park Trip  

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

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

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

Alternatively, you can message us on social media:

Some pictures from our fun trip 😊

One of the ATLAS members petting a adorable black rabbit.
One of the ATLAS members petting a adorable black rabbit
ATLAS member petting a sweet black rabbit.
ATLAS member petting a sweet black rabbit
ATLAS member petting a sweet black rabbit.
ATLAS member petting a sweet black rabbit
A photo of two friendly goats.
A photo of two friendly goats
Categories
Additional Needs and Disabilities Autism epilepsy Neurodiversity Question Card seizures

Is there a link between epilepsy and autism?

What is epilepsy and seizures?

Epilepsy is a condition that causes seizures this is due to an imbalance in brain chemistry so messages that travel between nerve cells or neurons become scrambled. A seizure is a burst of uncontrolled electrical brain activity between the brain cells common symptoms of this are stiffening or jerking of muscles, confusion, loss of consciousness, unusual thoughts or sensations.

Here are the most common types of seizures in individuals with autism:

  • Generalised tonic-clonic seizures sometimes called generalised onset motor seizures– it affects both halves of the brain and causes both stiffening of muscles and twitching or jerking.
  • Focal Onset Aware Seizures- they start in one area of the brain and may cause loss of awareness, or the person remain fully aware during the episode. This is the most common type of seizure for those who have epilepsy.
  • Febrile seizures- this type of seizure happens to children aged 3 months to 6 years and they occur when the child has a high fever. This may be either a general or focal seizure. Sometimes this may lead up to the development of epilepsy.

Is there a link between autism and epilepsy?

Yes

20-40% of people with autism have epilepsy. Autistic people are more likely to develop epilepsy compared to those who are neurotypical and people with epilepsy are more likely to be autistic than those without. The risk of developing seizures increases as person gets older in life.

One theory suggests that the overlap in conditions may be because they share common biological mechanisms such as too much excitation brain which may stem from too little inhibition (an imbalance of the two). However, many experts remain sceptical about this theory despite the data to support this claim from a study published in 2003.

Other disorders related to involve seizures also involve seizures these include Landau-Kleffner Syndrome, Rett Syndrome, Angelman Syndrome and Tuberous sclerosis complex and Fragile X and many other syndromes.

Potential signs to look out for

It can be difficult to recognize seizure activity when the person is autistic this may be because of communication barriers and the overlap in symptoms of the two. Cognitive delay, impaired social interaction, aggression and irritable behaviour can be seen in children with epilepsy but also if in those who are autistic as well which makes it confusing to find the cause.

However, there are some red flags to note for seizure which may be useful:

  • Staring episodes (could be a sign of absence or atypical absence seizures)
  • Stiffening (could be a sign of tonic seizures)
  • Rhythmic shaking or twitching (could be a sign of focal aware/simple partial seizures)
  • Loss of attention (could be assign of absence or focal impaired awareness/complex seizures)

Atypical absence seizure– Starts in both sides of the brain and is unusual or different compared to typical absence seizures.

Absence seizures– Starts in both sides of the brain and causes a short period of “blanking out” or staring into spaces.

Focal onset impaired awareness seizure– Begins in one side of the brain and the person has a change in their level of awareness during some or all of the seizure.

Tips for managing epilepsy.
  • Know that it could happen– making sure friends, family and carers are aware the possibility of epilepsy developing in someone with autism.
  • Get a personalised plan– creating a plan with doctors can help family and healthcare professionals to manage the seizures.
  • Regular medication– it’s important to medication as instructed if prescribed.

Identify triggers-not everyone has triggers before a seizure but common signs to look out for is being overtired, missing meals and forgetting to take epilepsy medication. Keeping a diary of seizures can help to see if there are any triggers.

  • Avoid heavy drinking– heavy drinking can cause seizures and make medication less effective.
  • Regular reviews– this is important as it can see if your treatment plan is going well. If you find doctors appointment there are many adaptions in place to make this experience less stressful like asking if there is a quiet room or asking to book the first or last appointment of the day, so you don’t have to wait too long for example.
  • Safety checks– a safety check can help to identify and lower the risks before someone with epilepsy does an activity.

Side effects of anti-epileptic drugs (AEDs)

AEDs are the most common used treatment for epilepsy and can be quite effective as they can help to control seizures in around 7 out of 10 people. However, side effects are common when starting the treatment and may pass in a few days or weeks or may not appear for a few weeks.

Some common side effects of AEDs include:

  • A lack of energy
  • Agitation
  • Headaches
  • Drowsiness
  • Uncontrollable shaking (tremors)
  • Unwanted hair growth or hair loss
  • Swollen gums
  • Rashes – this could a sign of a serious reaction so you should contact your GP or specialist.

Disclaimer- The medical information presented here is just information, not medical advice and should be used for educational purposes. If medical advice is needed you should consult your GP or any other appropriate medical professional.

Sources

Autism and epilepsy: Is there a relationship?

The link between autism and epilepsy explained

Epilepsy and autism

Autism and seizures

A guide to managing epilepsy in autism

Treatment for epilepsy

By Reneé

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
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 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 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 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
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
Bullying Education Mental Health SEND Social

How Language Impacts Lives: Stigma and Ableism

Contents

  1. Introduction
  2. What is stigma?
  3. Bullying
  4. Our role in ableism
  5. Self-description
  6. The power of participation

Please note that this post has since been edited to update the blog the group’s new name: ATLAS (previously SYAS).

Introduction

Recently I have been facilitating some of the virtual group meetings with the ATLAS members. As this week is anti-bullying week, the young people have been sharing their experiences with stigma and bullying as well as discussing ableist language and how they self-describe.

Overall, it is felt and experienced that stigma and bullying are still prevalent. ATLAS are telling us that we all need to be doing more to increase the visibility of additional needs and disabilities, as well as mental health (find out more on comorbid mental health with additional needs and disabilities), throughout society.

One of the repeating themes of discussion has been the importance of language in their experience as young people with additional needs and disabilities; how the language used to define and describe them has a direct impact on their lives.

What is stigma?

In this context, stigma is used to refer to the negative stereotypes and associations that society or individuals hold against a group of people. This results in prejudice and discrimination against the stigmatised group at social and/or structural levels.

In some cases, individuals from the stigmatised group can internalise this stigma, which affects how they view themselves and the expectations they have of themselves. This is known as self-stigma. An example of this which I have heard frequently and struggled with myself can be seen with dyslexia.

Due to the stigma around dyslexia, unfortunately you often hear people with dyslexia calling themselves words like stupid, or setting low expectations for themselves. They may be used to similar treatment from the people around them since diagnosis or had heard of the stigma before realising they were dyslexic themselves. Our member Ryan touches on this in his blog on dyslexia.

Stigma can lead to people being stereotyped, isolated and discriminated against. Ultimately this can have a variety of impacts on the targeted individuals, including avoiding diagnosis or treatment, and becoming the target of bullying.

Bullying

People “make fun of disability in my school.”

There are many different types of bullying and many reasons why someone may be bullied. When it comes to young people being bullied for their additional needs and disabilities, ATLAS felt like this was predominantly because of two factors: being different and the stigma surrounding their additional needs and disabilities.

“If you are different you are going to get bullied”

There is “not much understanding about how to stop [bullying and stigma]… people are still ignorant”

Stigma-based bullying is especially complex because it not only requires localised anti-bullying action but also a society-level approach to reduce stereotypes and prejudice on a larger scale.

An important part of tackling bullying aimed at people with additional needs and disabilities will be to address the widespread ableism and lack of disability awareness in our society.

“I don’t want to be made out to be ‘special’ because I have needs.”

Our role in ableism

What I can do and achieve is “underestimated by the college and my peers” because of my diagnosis

An ableist society is defined by its assumption that people without additional needs or disabilities are the norm. The way that society, physical structures and policies are designed is inherently exclusionary and inaccessible. This results in the limitation and undervaluing of people with additional needs and/or disabilities.

The way ableism presents is complex and can impact people on a variety of fronts. This ranges from the texture of a pavement surface or the lack of braille on building signs, all the way up to public attitudes and the very language used to define us.

“[Ableist] language is used on all official forms from the government. Ableist language is used as the basis of everything.”

People who do not experience and/or are not knowledgeable about additional needs and disabilities may find it hard to see how others can be disadvantaged by design or realise the existence or extent of stigma.

“Sometimes it’s not the words themselves, but the attitudes … You can use the word disabled in a derogatory fashion.”

I would like to recommend that if you are ever in doubt about the language you are or will be using, please ask the people described or impacted by that language.

Self-description

The way in which words are used to describe people shows how society sees them and acts as a perceived measure of both their worth and overall contribution to that society. How we define ourselves reveals our internal existence and true lived experience.

“Everyone around me assumes that I am not able to do things. Whereas I can’t do some things some days, but I can other days … They had only read the language on my report and not met me. Then I spoke to them on the phone and they realised their mistake, encouraged me to go to university.”

When public speaker and anti-bullying activist Lizzie Velasquez was 17 years old, she discovered that she had been titled “The World’s Ugliest Women” due to her disability: a rare congenital disease called Marfanoid–progeroid–lipodystrophy syndrome that prevents her from developing body fat.

In this powerful TED Talk she talks about the importance of self-description for everyone and asks: “what defines you?” (closed captions are available for this video).

You can find out more about Lizzie on her Youtube channel.

The power of participation

The User Voice and Participation (UVP) Team believe that the voice of the service user should inform our practice. Our aim is not only to make sure that the voices of young people are heard but also to facilitate participation groups that embody the meaning of participation, as defined by the young people that we work alongside.

This process is ongoing and always will be. Through this process we hope to help young people grow as individuals. We should not just take feedback from young people, but also give back in ways defined by the young people themselves. Examples of this include helping them develop confidence, providing Makaton training or interview skills advice.

“ATLAS has helped me build friends but not just in ATLAS, outside too, as it has given me confidence.”

Previously, ATLAS was called SYAS (SEND Youth Advisors Surrey). Members worked to rename and rebrand the participation group so that it aligns more closely with how they self-describe.

As a group, not only will ATLAS be redefining itself, but the young people will also be creating a report of preferred terminology, due in the summer.

“My disability is fluid.”

Due to recognition of the fact that people identify with different words in different ways, ATLAS have decided to use a traffic light system to indicate whether words should never be used (red), that some people may be okay with some words (amber) and words that are more widely accepted (green).

“I would rather say I have additional needs than say that I’m disabled.”

“Everyone identifies with the word ‘disability’ differently. Some Deaf and Blind people don’t consider being deaf and blind a disability. But for me I am chronically ill so it doesn’t matter where you put me, I’m still in pain all the time. Some disability you might have a better experience, but with my chronic illness I am not gaining, I am only losing.”

Watch this space for more news about ATLAS and how their participation will be changing to be more accessible! In the meantime I will leave you with one last thought from our young people about the language around additional needs and disabilities:

“Honestly a lot of time it’s about asking. It is about how someone self-describes.”