World Autism Awareness Week: Part one

Posted by

27th March – 2nd April 2015 is World Autism Awareness Week. Below is part one of a guest post from a good friend Maft which endavours to raise awareness of autism.

Imagine
Let’s play a game. Let’s play a game that involves your imagination but there’s no giant purple dinosaur in the vicinity. Think you can do this?

Imagine you were walking though a busy shopping centre on a Saturday afternoon and you saw a child shouting and screaming at their parents; or you’re at a family restaurant and a young boy is crawling over the floor talking loudly? How would you react? What sort of things might you say or think?

“Can’t you control your child?”
“He just needs a good smack”
“I’d never let my child behave like that”
“They need to learn some boundaries”
“She should have grown out of that behaviour by now”
“Serves them right for spoiling the child in the first place”
“I wish the owner would do something about that disruptive family”

We’ve probably all thought at least one of these in various situations.

Now, imagine the child was in a wheelchair or missing a limb. I imagine your reaction would be different, perhaps more sympathetic; after all they must have such a difficult time growing up with a disability.

I’ve heard these phrases directed at me or my son. I have friends who have been the subject of similar comments. It’s not nice.

I imagine they think it’s OK because my son doesn’t fall into the second set of scenarios; he’s not in a wheelchair, he doesn’t have missing limbs and he looks like any other 9 year old boy.

My son is disabled. He doesn’t have a wheelchair, or any obvious physical defect though; he is autistic.2014-12-13 19.49.02What is Autism?
I’m lazy so I’m going to quote directly from the National Autistic Society:

“Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them.

It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support. People with autism may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colours.

Asperger syndrome is a form of autism. People with Asperger syndrome are often of average or above average intelligence. They have fewer problems with speech but may still have difficulties with understanding and processing language.”

The full article is here: What is Autism?

Every person with autism is different; they will display different traits and sensitivities: some will be non-verbal, some will be complete chatterboxes; some may be able to learn to look you in the eye, others will avoid eye contact at all costs…

Assumptions & Myth-Busting
Many people assume that every person with autism will be super intelligent like ‘Rain Man’ or Nathan in the upcoming film ‘X+Y’ but that’s not always the case. ‘Neuro-typical’ people (that’s what the autism community refer to ‘normal’ people as) are all different and every person ‘on the spectrum’ (that’s what the autism community refer to ‘our lot’ as) is different with different strengths and weaknesses. Autism is a spectrum condition; there is a wide range of traits associated with autism but a diagnosis would only be given when a number of these are present to the degree where a person’s day-to-day life is affected. My friend puts it like this:

“Rather than imagining a linear scale, try to imagine a big cloud full of people all struggling socially but in different ways.”

There is a saying that “everyone’s a little bit autistic”. One of the traits relates to structure – such as knowing what will happen when you attend an event; what time is lunch, when does it finish etc. You may be thinking that most people like that sort of structure but when that lack of structure causes tremendous levels of anxiety, sometimes to the point where a person is physically or mentally unable to function, then it becomes an issue. Many people may have some autistic traits but the difference is if it affects their day to day functioning. I don’t agree with the claim that “everyone’s a little bit autistic”

There is a group in America that claims that autism is an ‘epidemic’ – it isn’t; it’s not even a disease. Think of your mind as a smartphone. Most people use Android or iOS and if someone gave you their phone you will probably understand how it works. If someone handed you a phone running ‘bada’ then would probably struggle. You know it’s a smartphone but there are just too many slight differences that you can’t quite put your finger on and it makes it hard to understand. However, with patience and practice you will get used to it in the end. My son’s mobile operating system is ‘bada’. He’s different, but he’s still a human – a ‘smarthuman’ at that. He doesn’t have a disease he is just programmed differently.

An adult with autism gave me this analogy: “Imagine life as a computer screen. A neuro-typical person could have many windows open at once – one for music, one for the news, one for writing etc. They can process all the information sources at the same time and effortlessly switch between them; but I see one window that’s been maximised. I know other windows are there but they don’t matter and, more to the point, it takes me effort to move between them.” How many times do we jump between tasks or change the subject in the middle of a conversation? These are massive issues for those on the spectrum.

It’s sometimes stated that more and more people are ‘becoming autistic’ (I’ll explain what’s wrong with that phrase in Part 2) with the often blatant undertone that there is an increase in prevalence. In reality our understanding of the condition has increased and the diagnostic techniques have improved; basically more people are being recognised as being autistic. This is quite heart-breaking when you think about it, how many children were mistreated or institutionalised a few decades ago simply because they weren’t diagnosed? The current estimate in the UK is that just over 1 in 100 people are on the autistic spectrum – that’s over 700,000 children and adults in the UK alone.

On Monday (30th Mar) I’m doing a sky dive with my 68 year old mother to raise funds for this amazing charity that have helped so many people over the years. It would be great if you could spare a few quids to sponsor me: http://netflix.maft.uk/jump.

Part 2 of this post will be available on Monday and will cover “Becoming Autistic”, “Day To Day Life” and another test of your imagination.

EDIT: Part 2 is now available here.

2 comments

  1. Great post and a fantastic one for a guest post. I couldn’t agree more with the unnecessary comments. I have heard a lot and I only have friends with Autism or with children with it. I know it affects everybody differently but people need to stop with unnecessary comments. Some things don’t need to be said. Having a physical disability growing it wasn’t something that was instantly noticeable and still isn’t if I’m sitting and it ts sad to say even 20 years ago physical disabilities were still tarnished with a certain stigma of “being hidden away” I can and equally can’t imagine having an ‘invisible’ disability to the extent of people making judgements. But it definitely needs to stop. I hope these posts help others to realise and be aware of Autism and through it to and so comfort others knowing they’re not and alone.

Leave a Reply

Your email address will not be published. Required fields are marked *