Why we (and my mum) are so glad the world is waking up to what autism is


Original post from The Guardian

‘…………By 

‘One of the common misconceptions surrounding autism is the difference between a temper tantrum and a meltdown, a ‘loud, uncontrollable emotional outburst resulting from neurological overload’.’ Photograph: Getty
‘One of the common misconceptions surrounding autism is the difference between a temper tantrum and a meltdown, a ‘loud, uncontrollable emotional outburst resulting from neurological overload’.’ Photograph: Getty

My first few years on this beautiful Earth were somewhat less than beautiful. I had been diagnosed with autism. One of the common misconceptions surrounding autism is the difference between a temper tantrum and a meltdown, a “loud, uncontrollable emotional outburst resulting from neurological overload”. My childhood was full of these. And I mean full. Multiple times, every day, the slightest thing would set me off and I would become so incredibly angry and violent – destroying any possessions within reach and even those that weren’t – that it might have looked to an outside like Bruce Banner hulking out.

And there was nothing my mum could do about it, because she had absolutely no idea what was causing it. She just had to try to calm me down as best she could, or, failing that, restrain me so I could not cause any damage to things – or people.

It makes me extremely sad to admit that there were multiple bruises, bite marks and tears, and yet nobody knew what was wrong. We saw numerous specialists and consultants who gave wildly differing opinions. We had observations at home several times, and one specialist involved told my mum in no uncertain terms that it was, basically, all her fault. She lacked “consistency”. He was of the belief that when a child doesn’t learn to obey you should simply continue on as you were, because they would learn from consistency and eventually come around. My mum was also told that she should send me into care, for the sake of my sister. Not until I was nine did we get a diagnosis that made actual sense.

I was diagnosed with what was at the time called “pervasive development disorder not otherwise specified” (PDD-NOS), otherwise known as atypical autism. In 2013, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) replaced the four previously separate diagnoses of autistic disorder, Asperger’s disorder, PDD-NOS, and childhood disintegrative disorder, with one single condition: autism spectrum disorder (ASD).

This change was made because it is a very complex disorder, and often patients do not fit into neat little subsections. Some patients, like me, have more extreme symptoms characteristic of one subsection, and less extreme ones relating to another. ASD treats the whole thing as a spectrum disorder, making it easier to diagnose and give advice on a case-by-case basis. You may sometimes hear people joke that “everyone is on the autism spectrum” to some degree, and while that is not strictly true, many are. And that why it’s so important to make all the information we have on this disorder available – to help parents, teachers, and friends.

The Guardian recently published an article about a study which is investigating whether parental training can improve the course of ASD in children. This article made both me and my mum extremely happy. She said that it would show that she had been right all those years ago, to continue to try to find different ways of dealing with my behaviours when all the “experts” were telling her to just continue with the same thing, day after day, despite the fact that it clearly wasn’t working.

And although the study is still going on, I for one can vouch for the fact that parents who learn to adapt and respond to ASD behaviour can help tremendously. I am no longer prone to extreme violent outbursts (there are times when I still get very angry, and to my shame may still threaten violence if I am unbelievably worked up, but haven’t damaged anything or hurt anyone in years.) These days, I depend on daily routine, and can get very agitated if things have to be rearranged, but I am hoping that will also improve, although I have accepted this as a part of my life.

What I want people who are reading this to realise – whether they are on the spectrum or they know someone who is – is that they should never, ever give up hope. I’m not saying you can have a perfectly ordinary life, free from all your symptoms. What I am saying is that your symptoms won’t necessarily be as bad in the future as they are at present, and one day you might be able to manage them really quite well. Never give up hope.  ………..’

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