A lot of balderdash and a little common sense (A British autism mum's perspective)
Emily Macinnery*
I wanted to share with your readers my list of inane or just-plain-wrong things which were said to me by the "professionals" around my son's autism, in the early days and a few common sense recommendations, as well.
1) Oh don’t worry about his lack of speech. He's only little. We wouldn't even look at speech till he's 3 anyway
Oh dear. This is the one I really should have ignored, knowing as I know now about the power of early intervention to change and form a still "plastic" brain. This was said by a British Health Visitor, who said there were lots of signs of autism in my then 2 year-old son, but that a "wait and see" policy was best.
2) Put him in dungarees
This was said to me by the head of his TEACCH school, when I queried how to stop him playing incessantly and inappropriately with his willy. What, forever? I asked, starting to wonder just a little whether I was getting the best advice.
3) Praise him when he's not hitting
The same school. The same lazy TEACCH advice, this time when I asked how to stop him head butting, hitting and biting everyone he met. Again, their advice simply sidestepped a growing problem. That double negative is pretty tricky for even a normally-functioning child to comprehend, and my son was non-verbal at that time. ABA later helped me overcome his aggression. A big win, given he's now on course to be 6ft 5.
4) He'll probably never talk - let's stick to PECs and Makaton
[Makaton is a language programme using signs and symbols to help people communicate.]
This was a gem from the speech therapist I had hired, at great expense. 4 months in, with my son still not yet 3, she made this pronouncement. Yet 3 weeks after I found ABA, he said his first word.
5) He's a visual learner
This old canard was said to me by virtually every TEACCH professional I ever came across. I think it is often code for "we can't be bothered to do the heavy lifting it would take to get him using words".
6) Showing him a picture of something solidifies the idea in his little brain.
This classic delivered by a TEACCH bod, who'd just told my son it was time for the toilet, and was chasing after him with a picture of the loo - even though he had happily started marching off there as soon as he heard the words.
7) Even autistic kids grow up.
The first piece of common sense. Perhaps because this professional was also an autism mum. She said this when I was bemoaning whether he would ever grow out of trying to flood the bathroom, or destroy the kitchen, She made me realise that some of the things he was doing were because he was 2, not because he was autistic.
8) ABA is cruel and will ruin your family life and make the child into a little robot
This was said to me, in some form or other, by virtually every education professional I ever came across. They really did think of ABA as some kind of evil cult. Luckily another mum convinced me otherwise. Without ABA, my boy would still be non-verbal, would still be hitting me and others and would be virtually unsocialised. As it is, he has thousands of useful words and more and more phrases, We go swimming, we take him to restaurants, he can read and write. ABA is no miracle cure, but it sure does ameliorate some parts of the autism.
9) You will go through all the stages of grief, and finally find acceptance.
It has taken 5 years, but I think I am almost there. The other day someone referred to the fact that "sadly, Johnny is autistic". No, I'm not sad about that any more, I said. I simply couldn't love him more, and I kind of see now how our life with him will shape up.
10) There are actually some benefits to the autism
Ok, I wouldn't actually have wished it on my boy, but I start to see through the haze of the last few years that there are actually some positives. My boy has no spite, no envy, no hate. He is happy every minute of the day. He smiles constantly. He will never know any of the anxieties and fears which beset us normally-functioning folk. He is my golden, smiling boy.
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* Emily McIneery is a pseudonym to protect the writer’s anonymity. She, her 7 year-old boy with an ASD plus 3 other daughters live in London, England