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 (:
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.
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:
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.
Tom Stoltman after winning WSM 2022Tom Stoltman after winning WSM (world’s strongest man) 2021
Who is Tom Stoltman?:
Tom Stoltman is the current worlds strongest man after winning the competition in May 2022. He is also the:
2021 Worlds Strongest man
World record holder for the heaviest Atlas stone ever lifted (286kg!),
A two-time back-to-back winner of Britain’s strongest man,
A two-time winner of Scotland’s strongest man along with many other incredible podiums such as 3rd in worlds ultimate strongman and 2nd in the 2021 giants live finals.
Tom was diagnosed with autism when he was 8 years old and has spoken about his own struggles inside and outside of school. He has mentioned being bullied and worrying about what people would think if they found out he was autistic.
Tom and, his brother, Luke Stoltman competing and cheering each other on
Tom’s Autism – in his own words.
“I kept autism hidden”
“I didn’t want my mates to laugh at me”
However, he mentions that after telling his friends and others about his autism he felt a tremendous amount of relief after being accepted and supported by them. His friends made sure that he knew they accepted him for who he was and that it didn’t change a thing about their friendship which is truly phenomenal.
Luke Stoltman (Tom’s brother) has also talked about Tom’s experiences and growing up with him when he was younger. Referencing times that Tom would really struggle, he says,
“if mum went out shopping, he (Tom) wouldn’t stop crying till she came back” and that “he wouldn’t go anywhere by himself”
Tom has said that he found it difficult when something didn’t go as planned, as he would become fearful and potentially breakdown. This also wasn’t helped when others would say that it didn’t matter, as this just made him feel very different to his friends and others.
Tom saw a great change in his life when he was first invited to go the gym by his older brother Luke as this was the start of an incredible ongoing career in the internationally competitive arena of ‘strongman’ for both. Tom found comfort in pushing himself in the gym as he mentioned he didn’t get along with the more traditional side of school such as maths and English, but he truly thrived when it came to Physical education and many other sports.
Tom, and his brother, Luke Stoltman after Toms win at World’s strongest man 2021
What he has done for the awareness of autism–
Tom Stoltman has gone on many podcasts, interviews and has personally made videos on him and his brothers YouTube channel. Some of these are linked below. He has been quoted saying phenomenal things such as:
“Autism is my secret weapon” and that it should be
“Used as a superpower”, he has also talked about how that just because he is labelled that it doesn’t make him different. He strives to be an example to other autistic children and show them that they too will achieve incredible things.
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:
This film is about non-verbal autism and is based on the book The Reason I Jump written by Naoki Higashida when he was 13 years old. Naoki is now 28 years old and will be 29 in exactly 28 days. Naoki is a non-verbal autistic person from Japan. The book was published in Japan in 2007. The English translation was published in 2013 by Keiko Yoshida and her husband, English author David Mitchell who have a son who is autistic and non-verbal. Keiko and David were very passionate about this book because they felt this is the only book which helped them to understand their son. Naoki’s book is invaluable to help understand severely autistic children and young people because it is the only book about autism written by an someone who is autistic and non-verbal.
This film is part documentary, part dramatisation and has an actor playing Naoki Higashida when he was a boy. The film shows Naoki walking along the beach and countryside explaining lots of feelings, emotions and sensory input from his surroundings. While this is being shown there is a narrator speaking the words of Naoki from his book, where he expresses his thoughts and feelings around his autism and non-verbal autism in general. Naoki’s account being read out in the film is incredibly powerful, extremely insightful and very thought-provoking. In my opinion the most powerful quote of Noaki’s is, “To live my life as a human being there is nothing more important than being able to express myself”.
Screenshot from the film
The idea of turning the book in to a film came from the parents of a teenager I’ll mention later on. His parents Stevie Lee and Jeremy Dear, were the producers of the film. They had read the book and it had transformed their understanding of their son. Without the parents of servery autistic children and adults this film would of not been made. The documentary part shows non-verbal autistic people from all over the world. From England they film Joss Dear a teenager who is severely autistic and can speak but speaks mainly by one word responses or repeating worlds from a long time ago that people have said, mainly his parents. Joss is very sensory, he enjoys blowing bubbles, bouncing on his trampoline and swinging very high on a swing. Joss is unable to explain why he does what he does and like what he likes. He just knows what he likes and people can see he likes it because he is showing experiences of pure joy. One of the reasons that makes the film so immersive and fascinating, is when the film shows autistic people from around the world doing what they enjoy. The words from Naoki that are in his book were said by the voice of the book Jordan O’Donegan. Where Naoki’s insight is invaluable because he describes the reason autistic people do what they do. His words describe Joss perfectly. When he is jumping, Naoki’s words are voiced over, while the footage of Joss being shown is a very good way of showing what incredible insight Naoki has given Joss’ parents and everyone else.
I really enjoyed the film and it taught me a lot, even as an autistic young person myself, about non-verbal autism, because I am fully verbal and only know a few people who are non-verbal. The cinematography is very good, shows some stunning views around the world and captures all of the people videoed in the film exactly. I feel one of the most important parts for people to take away from the film is about Naoki and two autistic friends from America who are non-verbal. These three young people have non-verbal autism however they are all very articulate and all use the letter board to communicate. They all have a very high level of understanding of themselves and the world around them. This makes the powerful point that non-verbal autism is not talked about much and still very much misunderstood. It is still very much the belief, that non-verbal servery autistic people with have a limited understanding and severe learning difficulties, which is not always the case. As these three in individuals show very powerfully. Another part I really liked was when Joss was looking over a fence at a mental green box with lots of cables in. He wanted to climb in but his dad told him not to because of course it’s too dangerous to climb in. It is incredible that Joss can hear the green box, without seeing it, from quite a distance. Listening and finding the green boxes has become a fascination for Joss and he can sit with his head to one of them for a long time.
A screenshot from the film.
I would recommend anyone with an interest in autism or additional needs to watch this film. It is a very unique film which is very thought provoking to all that see it. I would give this film a 5 out of 5 star rating because the director Jerry Rothwell did exactly what he set out to do. “As a film maker”, he said, that making a film about Naoki’s book would “offer a great opportunity to use the full potential of cinema to evoke intense sensory worlds in which meaning is made through sounds, pictures and associations as well as words.” He said by creating this film, “My hope is that the reason I Jump can encourage an audience into thinking about autism from the inside, recognising other ways of seeing the world, both beautiful and disorientating.” He also said, “I hope the film takes audiences on a journey through different experiences of autism, leaving a strong sense of how the world needs to change to be more inclusive.”
As seeing the film myself, I would say that’s definitely what I got out of the film and I think many others will too. This film will probably send you on a roller coaster of emotions from felling happy, stunned, sad, surprised and cross. At times the film is funny, sad, enlightening, inspiring, powerful and most of all, gives you a small insight of what it can be like for people who are autistic and nonverbal.
Anxiety makes you more anxious and nervous. It is harder for you to talk about your feelings and emotions. Sometimes it is hard to talk about your thoughts and what you are thinking about.
When you’re anxious it is really hard to talk to people because you don’t know who to trust. With anxiety, I find it really hard to trust people.
Things that cause me anxiety
There are a lot of things that cause me anxiety. For example:
Meeting new people and seeing a new place.
Emergency services
Because hospitals and the emergency services are scary.
Emergency vehicles
For example, police, ambulance, fire engine, flashing lights.
Loud noises, alarms, vehicles, fireworks, thunder, heavy rain, wind, screaming and shouting.
Professionals knowing about my life and personal information and not knowing who will be told & who they may tell.
Changes.
Cancelling or changing appointments with little notice or no notice.
Changing schools.
Different primary and secondary school.
too many changes happening at once.
home schooling.
Moving to college and having to make new friends.
Negative things on social media.
The news.
particularly about covid.
Covid in general because you can’t see people and places.
The Dark.
I can’t see what is happening around me.
I can’t see what people are doing.
Fights and arguments because you don’t know what’s happening.
Small tight spaces: I feel stuck and scared.
People that are hurt or sad.
Sad knowing that my friends have anxiety and bad mental health.
My friends seeing me struggling.
Being adopted.
Not understanding the whole process.
Not meeting family members that I don’t know.
Scary times from the past: being threatened to be kidnapped as a kid.
Being touched
You don’t know if they’re going to hurt you or not.
Intrusive thoughts.
They can be hard to ignore.
Not understanding what my disabilities mean: Autistic Spectrum Disorder (ASD), Learning Difficulties, Sensory Processing Disorder (SPD), Anxiety, Sensory Issues.
Because I have SPD it takes me more time to process and understand information.
My meltdowns and shut-downs.
Sometimes I am non-verbal.
Managing anxiety
There are many coping strategies you can use to help with anxiety. I prefer some strategies to others. Ones that I like are:
Hugs (: This is a big one!
Hugs are great because they’re very soothing and relaxing.
I like the feeling of touch; it calms me down quite quickly.
I mainly like hugs from White Lodge staff.
Fidget Toys. Ones that I like include:
Stretchy bands.
When you stretch the bands, they help to relieve frustration.
Chew toys.
They help relieve the anger inside my mouth.
Exercise.
Walking and yoga.
Walking is really calming, and yoga really soothes you and makes you want to go to sleep.
The fresh air makes you happy.
Talking to people who I trust.
For example, staff at White Lodge.
Soft toys.
They’re nice to cuddle.
Adrenaline rush.
For example, from a roller coaster!
Baths.
You can have a bath bomb and a candle in there, put some classical music on, it’s really nice!
Washing products that smell really nice also make you smell great and clean.
Colouring-in.
Colouring in between the lines makes you feel really relaxed.
Cooking.
Mixing ingredients, for example, is very calming.
Animals.
My dog really helps me! And my fish!
Make-up or face paint
I find putting these on a really nice sensory experience.
It is also very creative and a good way to express yourself.
Medication
I have a chewing gum with hemp in it that really helps me.
Lozenges and calming sweets can also be good.
Crying.
When I am in a shut-down, I find crying helps me feel better.
Going to a library.
It is quiet and peaceful. It is nice to go in.
Looking through the books, choosing one and then reading is a good way to distract yourself.
When I am in a bad mood, but not in a meltdown, I often ask to go to the library.
When you are anxious it can be hard to make decisions. So, it can also be difficult to use coping strategies when you are anxious because you don’t know which one to use and which one will help you the most. Sometimes when you are anxious you can also forget about the strategies!
Using coping strategies
I find it easier to use coping strategies when I have a meltdown when people tell me to use them. But when I have a shutdown, I find it difficult. When I need to use my coping strategies, I remember them by:
Using lists.
I have two: an outdoor and an indoor one.
My mum, or the people around me, remind me.
When I am having a shutdown I like it when people check-in with me and ask what they can do to help me. I find that helpful. It is helpful when people try and ask what is wrong. When I am having a shut-down I find people giving me hugs helpful, but please ask me permission before you do!
I would like it if the professionals that work me had a better understanding of shutdowns and what I need when it happens.
If emergency services have to work with me when I am anxious, having a meltdown or a shutdown, I would like them to:
Not talk over each other.
It’s hard to understand what they are all saying.
Not ask so many questions.
They try to rush you to answer.
To communicate using sign language (BSL/Makaton) or flash/single cards.
When I am in a shutdown I find it easier to use a different way of communicating.
Understand that they are not someone that I trust to share my personal feelings with.
I know that they are not all trained medical professionals, for example the police.
Use less force and be more gentle if they need to touch me.
Give me more warning if they need to touch me, for example use a countdown.
It is well noted through observation and research that there is more gender diversity in neurodiverse people than neurotypical people. As gender and sexuality are social constructs, there is speculation that this relationship is due to the fact that being neurodiverse means you are less likely to adhere to cultural and social norms.
You may be wondering what all these terms mean:
Neurodiverse/Neurodiversity/Neurodivergent – variation in in the human brain. This term is used by people to express that their brains are wired differently due to having neurological conditions and/or disorders: ADHD Autism, Dyspraxia, Dyslexia, etc.
Neurotypical – this is a relatively new term that is used to describe people whose brain develops and functions in ways that are considered ‘normal’. It is the opposite of Neurodivergent.
Gender Diversity – is a measure of how much people’s gender differs from cultural or social norms due to their sex at birth.
Sexuality – is all about how someone identifies themselves in relation to the gender or genders that they are attracted to.
Social Construct – something that only exists as a result of humans agreeing that it exists.
Cultural and Social Norms – rules or expectations based on the shared beliefs of different groups of people that guide behaviour and thoughts.
Talking about experiences and difficulties of the LGBT+ community is extremely important to ATLAS members. This is not only because ATLAS want to be strong allies and raise the voices of minorities, but because a number of members are also part of the LGBT+ community themselves.
“When somebody refers to me as female, I think ‘oooh not really but close enough’. It took me a long time to realise that I don’t experience femininity and being female in the same way [as the people around me] because I am not really female.”
ATLAS member
Image by Sharon McCutcheon
Autism and Gender
ATLAS members reflected on how they weren’t told about the relationship between Autism and gender diversity when they were diagnosed:
“When you are autistic you experience gender in a very different way … no one mentioned this to me when I was diagnosed”
ATLAS member
I am nonbinary, I don’t talk about it much because it doesn’t come up that much. It’s very common with Autism but no one told me!
ATLAS member
How masking impacts self-discovery
Masking is a survival technique that is used by people with Autism to hide behaviours that may not be accepted by the people around them. This is often achieved by learning to display neurotypical behaviours. Ultimately, masking results in having to hide the true self to be protected from negative consequences.
“Masking is a trauma response and trauma screws with everything. Trauma affects people with autism a lot more. I don’t know where the mask ends and where I begin.”
ATLAS member
ATLAS members raised that as a result of masking, it can be difficult to work out who they are:
“When I was younger I would take behaviours I would see and mask using them. A lot of people I was around were heteronormative. It makes it hard for me to understand, I can’t always get my head around what I am or what I like because I have masked for so long.
ATLAS member
As a result some members felt unable identify with labels, which could help them find support from peers and communities:
I went to a university LGBT+ society event and someone came up to me and asked: Well what are you? Why are you here? I don’t know what I am because I find it really hard to process.
ATLAS Member
Labels
“Some people find labels helpful and some people don’t.”
ATLAS member
“For me it was empowering to have my labels, it helps me to break everything down to feel like I have control. But labels are limited in how they explain me. Something I found hard to understand was ‘comphet’: How much is me wanting to be loved? How much is me wanting men to validate me? and how much of it is attraction?”
ATLAS member
Comphet stands for compulsory heterosexuality. This is where heterosexuality is assumed and enforced by society.
“On a call I do at uni they put their pronouns in their Zoom names.”
ATLAS member
ATLAS members and staff loved this idea: members and staff are now invited to put their pronouns in their Zoom names if they want to!
Image by Sharon McCutcheon
Family Stigma
“People in my family are really against it [LGBT+].”
ATLAS member
Whilst family relationships can be extremely important for the wellbeing of children, young people and young adults, unfortunately stigma can lead to bullying, rejection and internalised stigma.
“My dad was very girls belong in the kitchen, seen and not heard. He wanted me to be his little girl and when I didn’t he came to disown me for it. It makes it hard for me to accept who I am. I have never felt comfortable with who I am or how I am. So when I hear people who are able to find themselves, I just don’t understand how they can make those decisions. I was told I couldn’t be gay or bisexual because I was just masking.”
ATLAS member
“Fortunately, I know how some people have a good accepting family, really only my mum accepts. My dad and my sisters think I am going through some sort of phase and that I’m probably stupid.”
ATLAS member
Final thoughts
“I think it is interesting how people have such different experiences.”
ATLAS member
Neurodiverse people, people with Autism, people with disabilities are just as different and individual as neurotypical people, people without an additional need or disability. Talk to us, listen to our experiences and ideas: we are experts in our perspective and have a lot to say!
To make sure that the voices of children, young people and young adults with additional needs and disabilities in the LGBT+ community are heard ATLAS will be starting drop-in sessions to provide a safe space and a platform for voices to be raised.
ATLAS Surrey 