Sunday, 15 April 2018

LIVING WITH AUTISM

Disclaimer: some names mentioned in this post have been changed for privacy reasons.

Today I wanted to talk to you about something close to my heart. I want to talk about autism.

The first thing I want to say is there is no singular type of autism. Autism is diagnosed on a spectrum, from low-functioning to high-functioning, both of which are hugely challenging to cope with.

1 in 100 people has autism! This means roughly 700,000 people in the UK alone have autism. That's a lot of people. If you don't know someone that has autism, it's still important for you to understand it because the statistically, you are going to come across someone or have to deal with someone with autism at some point in your lifetime.
This has been taken from The National Autistic Society website. 

I have two siblings that have been diagnosed with autism, both of which are male, although it affects both sexes.

My younger brother, Jack, has high-functioning autism and Asperger syndrome. It is important to note that you cannot see that he has any disability, and this is often the case with children with Asperger's.

Alongside this, Jack has a lot of other issues, such as OCD, Sensory Processing Disorder (SPD), anxiety, and cognitive rigidity. Woah! A lot of terms there, Georgie. That's fine, and totally OK if you have never heard of any of these before, allow me to explain.

SPD:

Growing up, Jack was quite aggressive, both unintentionally and intentionally. He had very little sense of 'personal space' and if there were two empty sofas, you'd bet he'd choose to sit next to you. Next to you and touching you. Next to you and so close that you were physically trapped in the corner of the sofa. It was lovely... in its own way, but also very uncomfortable.

He would also stroke my hair, not lightly, but with full-force in an unintentionally aggressive manner. It would hurt. This was due to his sensory disorder; sensory problems manifest itself in many different ways, however, the lack of understanding, or, rather, ability to gauge how hard or light to touch someone is one of them.

Imagine, looking at a cup of tea and not knowing how heavy or light it was. Imagine not knowing what pressure and force it would take to lift the drink. It would be difficult, right? These are things the everyday person doesn't have to think about because it's just hardwired into our brains. But people with autism struggle with this problem all the time, which is why they can be clumsy and are often the culprit for spilling drinks on the carpet (poor Mum).

SPD also affects eating certain foods, like mash potato and orange juice with bits in it -- the texture in his mouth was intense and uncomfortable for him.

OCD:

Believe it or not, autistic people don't go around polishing everything in sight. Cleanliness and OCD do come hand-in-hand, but it is also a huge stereotype which has led a lot of people to misunderstand OCD completely (can you tell I dislike the stereotype?) Jack goes through different rituals and routines that change. At one point he had to shower twice a day and rinse his hands after washing them twenty times. So, the rituals are a part of it. But, more importantly, OCD affects the mind. It is obsessively thinking about things, once a thought has planted itself you can't get it out. It's like your biggest worry is trapped inside your mind and all you can do is let it fester there, like an overgrown plant in your back garden that needs someone to help you chop it down.

Cognitive Rigidity:

People with autism often suffer from rigidity of thought too. This is similar but not quite as 'overthink-y' as OCD. Cognitive rigidity is normally associated with traits like stubbornness and selfishness. I'll give you an example. Jack was told that we were going to go to the shops in the morning and then to a restaurant in the evening. Last minute, there is a big change of plan which cannot be helped. Jack cannot get the initial timings and day-plan out of his head. He cannot cope with the change because he is continuously thinking that he must go to the shops before he goes to the restaurant. It is a rigid thought, a set-plan, and, again, something people with autism have to learn: things change without warning. This makes it really hard for autistic people on a day to day basis; plans are constantly changing, life happens, but it is this lack of structure that makes life really difficult for people with autism. They cannot cope easily without a plan.

Anxiety:

Anxiety can be crippling for anyone, not just someone who has autism. It is a feeling of dread, panic and worry all at once that can be set off by anything. It is often a hard task to get someone with anxiety out of the house as they feel overwhelmed and conscious.

Asperger:

Asperger's Syndrome is a disorder that makes it difficult for a person to understand social cues. I have lifted the things that they struggle with off of The National Autistic Society's website:

- Facial expressions
- Tone of voice
- Jokes and sarcasm
- Vagueness
- Abstract concepts

Jack frequently misunderstood jokes and turns of phrase. It was quite funny for us as a family! But frustrating and annoying for Jack, he has grown to find humour in this too, now that he's a little older.

Jack:

Jack has been very fortunate to go to a special needs school from the age of 9 years old and still boards there today at 17 years old.

Jack went from a 'naughty' child that had to be physically restrained in school by his teachers (!), he threw a shoe at his Headteacher, he, daily, ran away from school, went missing in supermarkets, physically hurt me and my sister out of frustration, struggled to communicate, and could not meet mainstream life in any way.

Eight years on, Jack has had music therapy, counselling, one-to-one teaching, structures put in place for him, work experience, cognitive behavioural therapy, the list goes on. And last year, that naughty child achieved some GCSE qualifications and is studying a BTEC I.T. course! He couldn't have become the man he is today without the outstanding support from all of the staff at Southlands School.

Some children go there whole life without specialist support. I know autistic/ Asperger's children that have been bullied to shreds in mainstream schools, all because their parent thought that by putting them in a 'normal' school, they would eventually become 'normal' too.

Would you take a wheelchair away from a disabled child and surround them with children who can walk, in hope that they would get up and start running? It is such backward and illogical thinking. It has the reverse effect. These children grow up to be a danger to society; they become insecure, depressed, aggressive young adults that cannot and will never be able to meet mainstream life, in fact, they often end up in prison.

We need to say no to autistic children in mainstream schools, now. It is wrong to ignore any child's needs in hope that their condition will just go away and become 'normal.' Who says 'normal' exists anyway!

Who was the other sibling that has autism?

James. James is my eldest brother and unfortunately, unlike Jack, in the 1990s, autism awareness was next to nil. He grew up without the specialist support he needed and struggles to meet mainstream life. He refused to go to school at the age of fourteen and became reclusive thereafter.

This is not an isolated incident and it stands to prove that autistic children need specialist help. This is also why autism awareness is so important. James wasn't diagnosed with autism until he was 24 years old, which means he could not access the necessary support he needed when he was younger. All because there wasn't the awareness of the disorder.


So, what can you do?

Be aware. By reading this you are already helping so much. If you see a 'naughty' child in school, don't assume the worst; assume that they have bigger issues. Trying to cope with just one of these disorders, let alone Asperger's or autism alone is unmanageable! Don't tut the child that's having a tantrum in a supermarket. Don't roll your eyes when you see a child running off in public. It is not a disability you can see, so you need to think beyond what you can see. Be kind. Be aware.

Awareness of autism and how to deal with someone who is autistic still has a long way to go, and I hope by sharing this, I will be able to create -- even just one -- conversation about autism and what you can do to help.

Here are some more links that provide a more in-depth understanding of autism:

This is a short clip from the point of view of an autistic girl:
http://www.autism.org.uk/get-involved/tmi/film.aspx

http://www.autism.org.uk/about.aspx

https://www.spdstar.org/basic/about-spd


http://www.myaspergerschild.com/2010/09/aspergers-children-and-rigidity.html

http://www.autism.org.uk/about/what-is/asperger.aspx


Love, George x
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