What we’re up against
Ill-informed: Too many medical professionals don’t take autism seriously. Picture: National Cancer Institute
I was talking to a brain surgeon the other day (yes, really, albeit a recently retired one) and he said some disturbing things about autism.
He claimed people were flocking to private clinics to ‘buy’ autism diagnoses just to get state benefits. Sadly, he wasn’t joking – it was clear from his tone he was serious.
I wasn’t able to haul him up on this bizarre assertion because:
(a) my friends were waiting and we needed to be somewhere;
(b) I’m autistic and have a horror of conflict, which would doubtless have ensued due to my lack of diplomatic skills;
(c) I’m autistic and my brain doesn’t have the processing power to unpick nonsense and refute it coherently on the spot.
Needless to say, though, I’ve been stewing about it ever since.
Private clinics charge anything from £750 to £3,000 or more to diagnose autism. (He suggested it was £100, and I did, at least, put him right on that.) Thanks to the NHS’s failure to provide timely diagnosis for all those who want it, many private clinics have waiting lists.
Assuming they’re reputable and staffed by qualified psychologists or psychiatrists, they don’t hand out diagnoses to just anyone. They require convincing evidence of autism.
No one would opt to go through the trauma and expense of this process if they didn’t genuinely suspect they were autistic. (Unless, perhaps, they were in the tiny minority with Munchausen syndrome, whose sufferers seek medical attention for conditions they don’t actually have.)
As for the benefits part, claiming is a nightmare. Many are means tested, the amounts often meagre and the rules always complicated. Anyway, being autistic doesn’t automatically entitle you to state cash. To qualify for PIP (the main disability benefit), you must prove particular types of difficulty – such as with dressing, eating, using the toilet or getting around. Even those who ought to receive it don’t always.
Women pay the price
You might be wondering why I’m so wound up about one person’s daft views. The thing is, he’s not unique. Not every autistic person wants or needs a formal diagnosis but many of us do, and we’re reliant on medical professionals to provide it. This wouldn’t be a problem if doctors were universally well-informed about autism, but many aren’t. And women, in particular, suffer as a result.
Unless you can afford to go private, GPs are the gatekeepers to diagnosis and too many – often those who’re older and male – don’t understand how autism can present in women and girls.
As a result, our requests for diagnosis are fobbed off with responses like: ‘You’re making eye contact and you’ve said you have a partner, therefore, you can’t be autistic,’ or ‘You have too much empathy.’ (These are real examples.) Or we’re misdiagnosed with conditions such as bipolar disorder, anxiety and OCD, and mis-medicated accordingly.
That’s what we’re up against – and why medical ‘opinions’ like these really do matter.