Tag: SEND

Our Preferred Terminology

Post author By UVP
Post date September 22, 2022
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Note: you can download all the chapter pdfs at the bottom of this blog!

Introduction and context

ATLAS aims to bring about positive change for people with additional needs and disabilities. A priority for us as ATLAS members is to actively tackle ableism, stigma, and discrimination in the work that they do. An essential part of this includes raising awareness around the power of language, especially the language used to define disability.

When talking about language, it is important to understand the power of language itself. How language shapes society, culture, the way we see groups of people and even how we see ourselves.

Language can, and does, shape and influence our reality. In this report, we focus on how language can spread ableism, stigma and discrimination.

Aiming to increase the use of language that people with additional needs and disabilities use to self-describe and identify in personal and professional settings.

How this chapter works

We felt that presenting just a list of words would not be enough to help professionals, services and the public understand the importance of language in their everyday lives.

Guide to the rating system

When we were discussing in group sessions how to indicate whether words should not be used, should be used with caution or are okay to use, we initially discussed using a traffic light system. However, it was found that some words can be more (or less) appropriate in different situations.

Therefore, in this report we categorise words using an adapted RAG (Red, Amber, Green) rating system: red words, red-orange words, orange words, orange-green words, or green words. ATLAS recommendations for each of these categories are listed in Table 1.

“The point of orange is that if the disabled person uses it themselves, that’s one thing, but if you use if for them it’s not ok. Ask first”
-ATLAS member

Please remember that this guide should not be used to overwrite the lived experiences of others. We would always encourage professionals to communicate with the people they work with and use the language that they self-identify and describe themselves with, even if that differs from the language suggestions we provided here. If in doubt, ask.

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

Table 1- ATLAS language recommendations for each word category.

Preferred Terminology Examples

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

“We don’t like to be called special.”
-ATLAS Member

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

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

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

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

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

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

Additional needs and disabilities is a green term.

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

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

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

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

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

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

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

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

The terms high or low functioning are rated as red.

“People find high functioning and low functioning very offensive.”
-ATLAS Member

The term low cognitive functioning is rated as red.

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

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

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

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

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

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

4. Use the word Disability.

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

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

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

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

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

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

Remember,

“Disability is not a bad word.”
-ATLAS Member

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

Report Chapters

Chapter 1 ATLAS- Who Are We Download

Chapter 2 ATLAS – Our Preferred Terminology Download

Chapter 3 ATLAS – Personal Testimonies of Ableism, Stigma and Discrimination Download

Chapter 4 ATLAS – The Power of Language Case Study – ATLAS Member Download

Chapter 5 ATLAS – Person-First vs Identity-First Language Emma Adsett Download

Chapter 6 ATLAS – Using Language to Create Safe Spaces for Disabled People – Rowan Foster Download

Tags additional needs, additional needs and disabilties, blog, disability, participation, SEND, young people

Additional Needs and Disabilities Autism Celebrities influencer Inspirational People Media Neurodiversity Personal Story Self-Description SEND

The Importance of Autistic Girl Influencers

Post author By UVP
Post date July 21, 2022
No Comments on The Importance of Autistic Girl Influencers

I often feel that once you have the diagnosis you aren’t helped to discover what things are related to autism or not, which makes it hard to accept or understand yourself.

Watching Paige’s videos has allowed me to go “oh, maybe that’s why I do this” and “its not just me” which goes a long way in actually understanding your feelings and feeling more at peace.

Paige has autism and anxiety and spreads awareness on social media. She does a lot of stuff about autism in girls. Which I found is something that I’ve struggled a bit with because sometimes I don’t feel like I fit in. I haven’t really told anyone, but I worry that people won’t believe me saying that I have autism because I don’t feel that I fit in some of the stereotypes of autism and everything that I’ve read and seen online.

I haven’t seen anything that really reflects what it’s like for me. I don’t know just feel a bit less alone with Paige’s content, just from seeing that other people may be struggling with the same kind of things.

I think that having some influencers with different diagnosis’ that young people can relate to is so important and would really help a lot of people.

Below I have listed some of Paige’s content that helped me.

Autism traits in girls

Paige Layle YouTube video on 10 Autism Traits in Girls (:

Autism stereotypes

@paigelayle
you’re not autistic. #fyp #foryou #autism
♬ original sound – paigelayle

Paige Layle’s Tik Tok Video on Autism Sterotypes

Awareness and information about autism in Girls

There are 4 parts, below they are in order from 1-4.

@paigelayle
learn more about autism! 🙂 i get many questions every day to make more vids about it, i will continue to show you guys! #feature #fup #fyp #featureme
♬ original sound – paigelayle

Paige Layle’s Autism in Girls part 1

@paigelayle
no such thing as high/ low functioning autism!!! it’s just how YOU perceive us. not about how we’re affected. #feature #featureme #fup #fyp
♬ original sound – paigelayle

Paige Layle’s Autism in Girls part 2

@paigelayle
more on special interests later ☺️ #feature #autism #fyp #fyp #featureme
♬ original sound – paigelayle

Paige Layle’s Autism in Girls part 3

@paigelayle
ahhh masking. can’t live with you, can’t live without you. #feature #fup #fyp #featureme #autism
♬ original sound – paigelayle

Paige Layle’s Autism in Girls part 4

Tags additional needs, additional needs and disabilties, Autism, blog, Celebrity, disability, influencer, paige Layle, participation, SEND, tiktok, young people, YouTube

Additional Needs and Disabilities Autism Neurodiversity Personal Story SEND Work

Autism Acceptance

You probably know a bit about what autism means, but here’s a quick recap.

Autistic people all struggle with communication, socialising, and flexible thinking. Many of us also have problems with sensory processing, self-regulation, and “meltdowns” or other catastrophic reactions.

It’s a “spectrum” condition, which means that different people are affected differently. Some of us can live fairly independently, and others can’t. Some can drive but not catch the bus, others can catch the bus but not drive. A popular phrase is “if you’ve met one autistic person, you’ve met one autistic person”. Very few things apply to all of us.

It’s a lifelong condition and in most cases, we don’t know what causes it. It’s likely to be partly, but not completely, genetics.

There are around 700,000 autistic people in the UK and about 12,000 in Surrey.

Here’s my attempt at an autism acceptance month blog post. It’s in the second person because that’s the easiest way for me to write, and it’s not perfect because I’ve learned that it’s much cooler to do things imperfectly than to not do them at all.

April was Autism Acceptance Month.

You used to think that if you ever wanted to not be autistic anymore, you’d just not tell people. You didn’t have to be autistic if you didn’t want to be.

You’ve now come to the conclusion that’s not how it works. Your common sense and life skills are slowly improving as you work on them, but you’ll always be obviously different.

And you need to accept that so that you can learn ways to cope and to change the world around you to be more okay. So you can live.

It goes something like this:

You have to go upstairs.

To begin with, in the back corner of the library, you need to type a number into a keypad next to a door, then push the door open and step inside.

First, you notice the warm wind hitting your face. Then it’s the overpowering smells. Next is the clutter and the obstacles, followed by the buzzing and echoing and kitchen and machinery noises. The harsh lighting isn’t helping.

You now need to make it through the corridor and type a different number into a keypad on the other side.

You can’t shut your eyes because the obstacles change multiple times a day. You can’t put your hands over your ears because you need to type in the number. You also can’t go back if you panic too much because the first door locks behind you and requires a code again. The only thing you can do to make it better is to hold your breath.

If you make it through the second door, you’ll notice the loudest, most painful and overpowering buzzing noise in the building. If you’re lucky, the smell won’t have travelled too much into here – either way, you have to breathe now. The lights are distracting and bright and different. One of the circular lights on the wall, about halfway up the stairs, is where the buzzing noise is coming from – it’s easy to spot because it’s a different colour from the rest. The square lights are mesmerising and unreachable.

The next problem is of course the stairs. There’s nothing between you and the ground except a small railing, and it’s terrifying and dizzying and you’re terrified you’ll die. You also have to walk right next to the loud light, and almost within touching distance of the square lights.

I usually just get the lift, even though it’s much slower.

But if you’ve made it up the stairs, you’ve made it through the worst. There’s still another keypad and some automatic lights to contend with, but that’s nothing compared to everything else.

Hot chocolate is upstairs, and so is Solar your weighted sloth. Your best work friend is probably hotdesking in the office, and you can see the town square from the windows. Upstairs will be okay.

Or this:

It’s 9:00. You’ve turned on the lights and computers on your way in, and you’re drinking your hot chocolate and playing Animal Crossing. The library doesn’t open for another half an hour, but you’re in a shared building and plenty is going on already.

It’s 09:20. Your colleague’s not here yet. No biggie: they don’t start for another 10 minutes. They’re probably fine. Normal people aren’t an hour early to work. And you don’t start until 10, so really it’s not your business. You might put the money in the tills and do a quick walk-round check to make things easier for them.

It’s 09:25. They’re not here yet. This is normal and okay. You move your things to be not visible from the public area and go sit in the office and stay calm because they’ll be here.

It’s 09:27. They’re not here, which is fine because they still have 3 minutes, and you’re not going to panic.

It’s 09:28. You check the timetable to make sure it’s the right day and the right branch and the right staff and the right time. It is. Of course it is. It’s fine.

It’s 09:29. You will not cry. Everything will be fine. They’ll be here. You’ve pretty much forgotten Animal Crossing at this point in favour of calm grounding exercises. Your eyes are stinging with the tears you said you wouldn’t cry.

It’s 09:29:30. What if they’re dead? But you can’t think that! Because they’re probably fine! They’re always fine! Everything is fine! Normal people don’t panic! You’re not panicking!

It‘s 09:29:45. The library opens in 15 seconds. What are you going to do? Probably open the library. But you start at 10 and know you won’t be paid for the extra half-hour because you shouldn’t be here, and what if there’s a bus pass and what if you have to close again immediately and be sent to another branch and what if they’re lost or dead or injured or maybe they’re panicking!

It’s 09:30. You open the library. You do not cry or panic. One of the regulars comments “You on your tod again today?”. Yes. Yes, you are. No one has an urgent problem, so you stand by the window looking out for your colleague.

At 09:31 you phone the big branch to ask if everything’s alright and if your colleague’s called in sick. They haven’t. The big branch is busy and they don’t have time for this right now. Your colleague must have gotten in trouble on their way to work. Some kind of accident or injury or something. They’re probably dead. Maybe you shouldn’t have opened the library. Maybe you should do the book drop. Maybe you’ll be lone working all day. Should you tweet that you’re closing for lunch?

At 09:32:18 your colleague arrives. “Traffic”.

…at 10:00 you officially start work, so by 09:57 you manage to convince yourself you’ll be okay.

You’ll be okay.

Or even this…

You can’t think through noises.

You can’t figure out how to use your phone.

It’s too loud.

Everything is too loud.

Your head is on the ground and the floor is hard and cold and you’re trying to think.

You remember you’re not supposed to bite the inside of your cheek, so you bite your tongue instead.

The floor isn’t cold enough.

You need to feel more pressure maybe.

You can’t breathe.

You hug yourself and scrunch up your eyes and you can’t think.

You can’t think.

…

You bite through the inside of your cheek.

…

An hour later there are noises and people and you need them to stop and you can’t talk.

You can’t talk.

You need a cup of water and your sunglasses and ear defenders and lip balm and weighted mammoth.

You can’t understand what they’re saying.

…

You need them to not be touching you!

…

You need them to stop touching you!

You can’t think through people touching you.

…

Water.

Ear defenders.

Monty the mammoth.

Be calm.

…

You sit calmly. You do your grounding exercises. You hold your mammoth. You drink your water. You will be okay.

…

You’re sorry. It was all too much. You don’t want it to happen again. You’ll say something before it happens next time. There won’t be a next time. You’re fine. This is rare. You’re doing well.

(There will be a next time).

The reason you have a day off in between every workday is because autism is exhausting.

It’s exhausting even without getting into the fact that other people are different and alien and don’t make any sense.

But the library is one of the good parts.

For £10.35 an hour (£9.50 on weekends), you run a library and you are happy.

You’d happily pay £10.35 an hour for the joy of it, but that’s possibly because you’re still not great at budgeting.

You have thousands of books. They’re your books.

You unpacked them and stamped them and gave them homes on your shelves, and you allow anyone to borrow them as long as they promise to bring them back in three weeks.

You help people with the computers.

You show them the simplest way to print a returns label, and offer them some children’s scissors and sticky tape so they can post their parcel on the way home.

You tell them that if their phone usually remembers their password for them, they can find it by going to Settings and then Passwords.

You help people travel the world with flight tickets and covid passes. People complain to you that “everything’s online these days,” but you think it’s sort of cool because that means you can help with everything.

You make bus passes.

“Smile as if you’re about to get on a bus!” is one of your catchphrases.

You’re a fountain of bus knowledge. You know about the secret buses on Saturdays, which companies let you use your pass before 9.30, and the best places to make connections.

You run amazing events.

You have about as much patience as the children, so you have a great instinct for when to abridge a book or song at Rhymetime. Your current favourite book is Superworm, and you skip over the entire plot in favour of just reading about how great the worm is.

The regular kids think Wiggly Woo is a snail song, The Wheels on the Bus is about dinosaurs, and Sleeping Bunnies can be sung about any animal, including snakes. Their grown-ups can now predict the punchline to every new joke you invent, and you know which ones to look to for help when you lose count in Five Little Ducks.

You even make library cards and amaze people with the services we have to offer.

“Children’s books can be reserved for free on a child’s library card, which means that if there’s a book you want to read but we don’t have it here, then if another library in Surrey or Essex or half of London has it, we can bring it here for you to borrow as if it was one of our books!”

You also make sure everyone gets a sticker for joining, and a sticker for using the self-service machine for the first time.

Libraries and chocolate milk are two of your favourite things in the world, and from your perspective, sitting in your library drinking chocolate milk means you grew up to be happy. You didn’t become an astronaut with several PhDs, and you don’t live in Paris with four pet rabbits, but you have libraries and chocolate milk and you’re happy.

You know now that you possibly can’t fix the whole world, but you can work in a library.

Things are good.

Things are good.

One of my favourite ever library moments was when I was running Lego Club in Slough Library, and a couple of the parents of the kids who came from the local special school asked if I was autistic. We then had a great and open conversation, and one said that it was amazing having me run the club, because I gave them hope that their kids would grow up to be like me.

Honestly, at that moment I rather hoped their kids would grow up to struggle much less than me.

But that was more than two years ago now. Life’s got easier since then. I’ve grown to accept my autism, and I have more support to help me cope with the world. Things are good.

I’m only an expert on myself. Even then I don’t always have the greatest insight, so I’m not quite ready to give tips on how to fix the world to make things easier for all autistic people.

But here are a few things that help me:

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

Some random thoughts that might be useful:

One thing I dislike is when people with autism or learning disabilities are referred to as “individuals”. Or “the individual”. We don’t use that word when referring to anyone else, and it comes across as othering. However, there is a lot of disagreement between autistic people and those around them about language, so my preferences won’t reflect everyone.

My favourite thing a professional working with me has ever done is my current community nurse rephrasing questions if I say I don’t know the answer, even when he knows I should know. If it’s a question I’m not expecting, I can’t always find the right thoughts and turn them into words. Especially not while everyone’s looking at me. That’s why it’s also really useful to be able to have a friend or carer with me during appointments – they can often find the words I can’t.

Here are some of my favourite non-fiction autism books:

When you want a simple, easy-to-read metaphorical explanation:

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

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

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

And my favourite quote:

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

Thank you for reading!

Tags additional needs, additional needs and disabilties, Autism, blog, disability, Libraries, Library, SEND, Work, young people

News

Bockett’s Farm Park Trip

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

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

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

Alternatively, you can message us on social media:

Some pictures from our fun trip 😊

One of the ATLAS members petting a adorable black rabbit

ATLAS member petting a sweet black rabbit

A photo of two friendly goats

Tags additional needs and disabilties, blog, Farm, Fun, National Pet Month, participation, SEND, Trip, young people

Additional Needs and Disabilities Autism epilepsy Neurodiversity Question Card seizures

Is there a link between epilepsy and autism?

Post author By UVP
Post date June 2, 2022
No Comments on 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

Tags additional needs, additional needs and disabilties, Autism, blog, disability, epilepsy, participation, seizures, SEND, young people

Additional Needs and Disabilities Personal Story SEND Sensory Processing Disorder

Sensory Processing Disorder

Post author By UVP
Post date April 21, 2022
No Comments on 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.

Tags additional needs, additional needs and disabilties, blog, disability, Personal Story, SEND, Sensory Processing Disorder, young people

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

MENCAP Myth Busters and ATLAS

Post author By UVP
Post date April 14, 2022
No Comments on MENCAP Myth Busters and ATLAS

What is Mencap?

Mencap is a charity in the UK that works with people who have a learning disability.

What is their goal?

Mencap want a world where people with a learning disability are valued equally, listened too and included.

This is what some of their objectives are:

We want to have made a significant and measurable improvement to people’s attitudes towards people with a learning disability.
We want to have contributed to improving the quality of life for people with a learning disability.
We want more people with a learning disability to have stronger friendships and relationships, and be better connected to their communities

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

About us – What we do | Mencap

Who are the Mythbusters?

Mythbusters are a group of eighteen ambassadors who are using their platforms to tackle the stigma and lack of awareness around learning disabilities.

One of the ambassadors Jessica Jane who is a Paralympic champion and campaigner wants more people to know that just because a person does not look like they have a disability, does not mean that they don’t.

Who is ATLAS and what do they do?

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

This is what some of their objectives are:

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

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

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

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

Atlas Ambassadors

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

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

ATLAS Groups – ATLAS Surrey (surreyatlas.uk)

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

Ableism, Stigma and Discrimination

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

Autism

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

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

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

Action cards and their importance

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

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

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

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

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

Mencap

Website:

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

Facebook: Mencap – Home | Facebook

Twitter: Mencap (@mencap_charity) / Twitter

Youtube: Mencap – YouTube

Linkedin: Mencap | LinkedIn

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

ATLAS

Website:

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

Facebook: Surrey ATLAS – Home | Facebook

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

Youtube: User Voice & Participation – YouTube

Twitter: ATLAS Youth Advisors (@SurreyAtlas) / Twitter

Tags additional needs, additional needs and disabilties, blog, Celebrity, disability, participation, SEND

Additional Needs and Disabilities Book Review Film Media SEND

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

Post author By UVP
Post date February 22, 2022
No Comments on Wonder: is Auggie’s disability portrayed to a high standard?

What is Wonder about?

Picture of the book Wonder (left) and Poster of the movie adaptation (right)

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

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

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

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

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

Auggie (played by Jacob Tremblay) in the film.

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

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

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

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

How were certain topics tackled throughout the novel and movie?

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

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

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

My final thoughts on Wonder

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

Tags additional needs, additional needs and disabilties, blog, book, disability, facial difference, Film, physical disability, SEND, Treacher Collins syndrome, Wonder

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

My Meltdowns and Shutdowns

Post author By UVP
Post date August 27, 2021

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

Tags additional needs, additional needs and disabilties, ASC, asd, Autism, blog, Coping Strategies, disability, Meltdowns, participation, SEND, shutdowns, young people

Achievement Additional Needs and Disabilities Autism Personal Story SEND

The power of participation: getting your voice heard

Post author By UVP
Post date February 5, 2021
No Comments on 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.”

Tags additional needs, additional needs and disabilties, atlas, Autism, disability, feedback, getting your voice heard, mute, participation, SEND, surrey, talking, voice, young people

Education SEND Surveys

Public Feedback on Surrey’s Alternative Provision

Post author By UVP
Post date December 16, 2020
1 Comment on Public Feedback on Surrey’s Alternative Provision

Photo by Pixabay on Pexels.com

Introduction
Additional Mental Health Support
Additional Support for those with Special Educational Needs and Disabilities:
Adaptable Teaching Styles & Understanding Needs
1:1 Support
Local Alternative Provision

Introduction

Alternative Provision is education outside school for pupils who don’t attend mainstream school for reasons which might include being excluded, behaviour concerns, mental health or illness. Examples of Alternative Provision include Pupil Referral Units, the Alternative Learning Programme (ALP), Short Stay Schools and Access to Education (A2E).

Surrey County Council are redesigning the strategy for Alternative Provision and the User Voice and Participation Team created two online surveys to get the views of children, young people, parents and carers. The surveys were open from 23^rd October 2020 – 17^th November 2020. We received responses from 65 children and young people and 78 parents and carers. Below are the main things that respondents told us they would like to see in Alternative Provision:

Additional Mental Health Support

38% of children and young people said that mental health was one of the main barriers that affected them staying in mainstream education. Parents and carers also expressed that mental health was a significant issue that they felt needed attention. Therefore, more mental health support is needed to help children and young people to remain in education. Children and young people need to be able to access support easily and in a timely manner to ensure that their mental health issues are addressed quickly, and their education is not affected.