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

My Meltdowns and Shutdowns

Definitions

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

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

My Meltdowns

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

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

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

I don’t like to make people worried.

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

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

My Shutdowns

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

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

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

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

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

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

How I manage overwhelming situations

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

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

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

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

Film Review: The Reason I Jump

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

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

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

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

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

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

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

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

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

My Anxiety, ASD, and Me

What is Anxiety?

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

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

Things that cause me anxiety

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

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

Managing anxiety

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

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

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

Using coping strategies

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

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

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

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

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

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

Neurodiversity: Gender and Sexuality

Introduction and defintions

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

You may be wondering what all these terms mean:

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

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

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

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

Autism and Gender

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

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

ATLAS member

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

ATLAS member

How masking impacts self-discovery

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

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

ATLAS member

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

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

ATLAS member

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

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

ATLAS Member

Labels

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

ATLAS member

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

ATLAS member

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

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

ATLAS member

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

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

Family Stigma

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

ATLAS member

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

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

ATLAS member

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

ATLAS member

Final thoughts

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

ATLAS member

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

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