So now his speech is starting to improve slowly, but other social things are really suffering. We pull out of kinder gym, because he just hates it! Won't cooperate, cries and complains, and doesn't fit in with the other children. We go to a playgroup, but we eventually stop going there as well. Michael is just unhappy, doesn't want to join in, has trouble sharing, hates the singing and reading times. The difference between him and other children is becoming quite marked.
It is at this time that we first come across that word. Autism.
I don't know about anyone else, but my understanding of what autism was is very different to what I understand now. Before, I thought a child with autism was someone who didn't talk, didn't want to associate with anyone, didn't even try to interact. To put it bluntly, a child who could walk and eat, but had no other real brain function!! That's how it was portrayed, when I looked at it at all. With this image, I was adamant that my son did NOT have such a thing. But then I looked at it some more, and realised that my understanding of autism was pitiful to say the least.
Autism is actually a spectrum. The correct term for it is Autism Spectrum Disorder(ASD). And this spectrum is very very long, ranging from low functioning, to high functioning. It includes some with learning difficulties, and some who have advanced knowledge. Some children can be verbal, others non-verbal. Some have sensory issues, which again can wide and varied. There seems to be no end to the possibilities of how ASD presents itself. It is, in fact, very hard to pinpoint exactly what it is. There are no blood tests, gene tests, or any other physical test that can diagnose ASD. It's a subjective mind and behaviour based diagnosis.
So, between three and five years of age, this is what we began to seek a diagnosis, so that we would then know what we were facing, and hopefully be able to know how to help our boy.
I was about 10 or 11 when I first heard the term "autism", and I encountered it because one of my sisters was diagnosed with it. Now we had known that she was "mentally disabled" for as long as I had been alive, and a few years before that. Now we had a name for it, and of course the only information we could find about it in rural Australia back almost 30 years ago was very limited, so the initial reaction in the family was "huh? that doesn't fit!"
ReplyDeleteTo make it worst, we had one of those big dictionaries with a good etymological entry, so it was clear that the name implied "lives completely in her own world" and some of the family was suddenly insulted at the idea that my sister was just "self-obsessed". It took a long time to find out what this was about, and it was 20 years before I really got the hang of what "autism" means, and the whole spectrum idea, etc.
Yes, I had much the same impression and you know the shocking thing, it came from an Autism mum who came to speak to me when I was doing my disability training! She actually said these children don't love their parents, they "need" them but not "want" them and I realise now that was just her experience, and she should have presented it as such.
ReplyDeleteI know lots of parents with autism, and there are some fabulous UK and Irish autism bloggers if you want me to introduce you.
I love the way you write and am so glad you are sharing Michael's journey with us.