parents at consultation

Autism Diagnosis: Why Finding Out Shouldn’t Be Bad News

Wouldn’t it be great if finding out that your child was autistic wasn’t portrayed as a negative.

Maybe it varies depending on where you live, perhaps our experience was atypical, I’m willing to be talked round if my anecdotal view is proven to be false (I’d make a terrible anti-vaxxer with that willingness to listen to reasoned argument).

What I recall of finding out our son was autistic (and I admit I’m casting my mind back seven years here, using the same brain that struggles to recall the plot in any drama from a week ago) is that every step had a tinge of negativity.

There was no sense of going into appointments with those in the medical profession and it being a finding out one way or the other, as you might the sex of a child, with either being equally good news.

It was this thing that you didn’t really want your child to have if you were being honest. Do many parents with no previous experience of autism go into an appointment with a paediatrician and hope their expert opinion will be that ‘yes, they are autistic’. I doubt it, but again, perhaps I’m wrong.

The same is true with health visitors and GPs, the talk is of missed milestones and how that might be a sign of autism. It is the negatives that lead to diagnosis – the eye contact not given, the other children not played with, the first steps not yet taken, even the toys not used in what is deemed the correct (i.e. normal) way.

When the diagnosis comes the thought therefore is of loss, the loss of the future that might have been, the loss of the child you could easily plot out a normal life for. They’d ease through school, they’d find a job, relationships and friendships would come, the negative shrouding of the entire process makes you mourn for the potential loss of normality.

However, just because most people are not autistic it does not make autism worse.

My son is insanely creative, he can create books with humour and a level of artwork that I can’t manage now, let alone 30+ years ago. Oh, and he can bash these out in no time.

He is funny, he is original, he is energetic. Yes, he is weaker in some areas than many children his age, but he is also advanced in others – his reading age is well in advance of his actual age, his memory seems close to photographic (which can be annoying).

He is not better or worse than most other children (well, he’s definitely not worse!), I don’t mourn for a child we might have had, I embrace the one we did have, one of the two we have, him and his younger, neurotypical brother.

Yes, things are harder for him but that’s largely because the environment is harder, if most people were autistic how would those who weren’t fit in? They’d struggle, that’s how.

And that’s why I look back on the process and wish it could be done differently. I wish it could be done in a way that didn’t leave parents with a sense that there is one result they want, one they don’t.

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