This morning I attended the first of six sessions on what they call "parent training" for parents of children diagnosed with aspergers, over the age of seven.
Today's session was ice-breakers and an overview of the course, which was pretty much what you'd expect from the local authority. There was a lot about "behaviours" being what autism is, which I don't really agree with, but most of the content looked OK. There was also a strong emphasis on how it has been proven that vaccines (among other things) do not affect autism, not a surprising view from someone employed by the NHS.
They talked about how the cause of autism wasn't known yet and that perhaps reducing it will turn out to be just something simple like the way spina bifida has been reduced by taking folic acid! At that point I was just about ready to speak up - they were talking about autism as a defect to be eradicated. Thankfully, one of the course speakers piped up at that point and said she didn't agree.
When we did group introductions I spoke about how Cameron's diagnosis had lead to my own - and from that point on, I felt like there were a lot of moments in the course when the people delivering it paused, looked at me, and rephrased what they wanted to say in their head so as not to offend me. If I hadn't revealed that I have been diagnosed with aspergers, I'm very sure that there would have been a lot of insensitive things said in a sort of sarcastic way as they rolled their eyes. I worry about what message this is giving to parents - if what professionals usually say would be offensive to me as a person with aspergers, then surely it is negative and shouldn't ever be said in that situation? And in turn, shouldn't be used by parents whose children may overhear them.
When they touched on parent's feelings at the point of diagnosis, the PowerPoint presentation had a list of emotions such as
- grief
- disappointment
- frustration
- guilt
- upset
and at that point, one of the parents burst into tears while another talked about how she grieved for the life her child will never have - never leave home, no marriage or babies, no career, no friends etc. To say I was perplexed would be an understatement! I hope, for the sake of their children, that their attitudes don't turn into self-fulfilling prophecies.
We were played a video to cheer us up in a kind of - it's not all bad news, way. It was about genius adults and children throughout history who were said to have had aspergers. But - what about those children who don't have a "genius" interest? What if they're into Pokemon, WWF wrestling or the history of Coronation Street? Are parents to grieve all over again? The parent in the group (who was crying) was - her son was obsessed with the goings on of the local chip shop and somehow that made him a disappointment in his parent's eyes.
I guess I'm picking out all the bad things to write about. I related to just as many things as I was outraged by and I plan to attend the rest of the sessions.
I'm not saying that bringing up a child with autism isn't challenging - clearly it is. And the diagnostic process is shockingly difficult and emotional. But when did "different" turn into a "failure"?
I got the impression from one family today that if there had been a test during pregnancy to diagnose autism then they wouldn't have continued with the pregnancy!
When did we (as a society) become so elitist?
((Hannah)) thankyou for this post. I have an 11 y.o with a dx of A.S and a 9 yo who is autistic. Going through the dx process has been gruelling, its the negetive attitude of the professionals and people in general that I find frustrating. I have'nt felt grief, frustration, disapointment wrt my boys.
ReplyDeleteArgh! It's scary how quickly people seem to come round to what basically amounts to a eugenics agenda :(
ReplyDeleteUnfortunately--as a society, we've always been like this. Worse in the States. I swear--I had no idea about Downs Syndrome until I was almost 12. We were on a train in Ireland--and about three carriages were full of kids with Downs heading for a day out. We were shocked-we had never seen anyone who looked 'different'. My mom explained how in the States any birth defect was seen as a thing to be shameful of. BUT--I do think we have made great strides in the past 30 years. When I was in school there was no such thing as a 'disabled student'-they were kept out of sight at all times.
ReplyDeleteI'm glad you are going to keep attending--if just so that you can see what the pro's & con's are, so that you can choose which to use for yourselves, and what new information you can give to others. Who knows--maybe through your own experiences, you can be the 'change-maker' in people's attitudes to Autism.
You and I know that it's not a 'failure' to be autistic, many of these parents are still dealing with the process of diagnosis and probably need time to come to terms with what that means to them, it certainly doesn't help in that situation imho to have the negatives thrown at you when you are trying to process everything you've been through. Bringing up autistic children isn't easy, I would never pretend for one minute that it is, but lots of what people know about autism is usually a result of negative images in the press to garner support for autism charities and research etc and although that's what gets the publicity it's not as you know the whole story of having an autistic child. I hope you keep going to the meetings to share the positive, unique and enriching aspects of autism because to the shock and surprise of many people I speak to it's not all about 'grief, disappointment and upset' all the time.
ReplyDeleteGood luck with the rest of the sessions.
I worked with children who had autism for a few years and am deeply saddened to hear about the speakers and the mindset at the session you attended. What a beautiful mother you are providing such nurture and creativity in your days with your child. I am happy you were able to speak up and am happy someone spoke up about vaccines!! That is a hot button of mine! Many warm wishes to you mama xo I don't think I would be able to attend another minute, good for you for speaking up.
ReplyDeleteI admire your courage and patience in dealing with these people and I am glad that there is at least something in the course that is worthwhile.
ReplyDeleteDifferent isn't wrong but many people feel it is perhaps from being made to feel that way about being a little different themselves as most of us really are.
I'm sorry you had to sit through that. I admire your attitude. I think we have, as a society, become very elitist. Education is all about jumping hurdles, and there's little room for difference.
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