Missed diagnosis failing women in the UK

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http://www.theguardian.com/lifeandstyle ... led-by-nhs

The article is new. The problem is not. Where and when will change come from to acknowledge and resolve this issue? From the diagnostic community? Well they have had a long time to do so, and if there have been improvements, they have slipped below my radar. I think the situation in their hands has become worse, not better, given the "improvements" to the DSM. Sad.

If change is going to occur it has to be led by the ASD community itself:
http://autismwomenmatter.org.uk/

Or the current difficulties will get worse.

link didn't work, assume it is this

http://www.theguardian.com/lifeandstyle ... led-by-nhs

I really like how it opens with by calling the extreme male brain theory a myth, think theory really isn't helpful and doesn't even need to be called that, could just call it extreme systemising brain theory

I find the "extreme male brain" theory rather odd. The ASD men I know aren't stereotypes of typical men, they miss out on more typical male traits than average. Some of them are kind of extremes of one minority male stereotype (the geek) but plenty of NT women fit that too. I'm not an especially girly girl but I'm not convinced I would fit in better with men, I don't really fit any gender stereotype. I have a more male personality than most women but definitely not "extreme male" (just look at my shoe collection). You would also expect all or most ASD people born female to be transmen and none born male to be transwomen if the "extreme male brain" theory had any truth, this is not what happens.

I didn't like the sound of the theory when I heard it, then I read about it in Simon Baron Cohens Autism and Aspergers: The Facts book (thread here http://www.wrongplanet.net/forums/viewt ... p?t=273114) and I just thought it was a really unnecessary theory.

It basically boils down to Men on average have a greater tendency to systemise and Women have a greater tendency to empathise, people with aspergers have a very high tendency towards systemising therefore 'extreme male brain'. Just seems so stupid, just because women on average tend to be less systemising doesn't mean there isn't a massive range with a great deal of overlap with the male range. And even in his own book he gives the breakdown of men and women with aspergers who fall into his 'extreme male brain' category and it doesn't include everyone with aspergers. Don't understand how it is different from, and why call it any different to, the systemising/empathising theory. I wonder if he even thought about how harmful calling a theory that could be, wonder if it is more about giving his work a 'hook' that makes it easier to sell popular science books and magazine articles.

and I agree I don't think people with autism come across as extremely male, I would associate that with aggression, competitiveness and general macho behaviour. Isn't there some evidence that aspergers is linked to higher levels of androgyny and rejecting gender roles. When I was a kid, while I wouldn't say I was effeminate I certainly wasn't boyish either, my interests were butterflies, cute animals and teddy bears, I asked for the female character action figures because I was too embarrassed to just ask for a doll.

Stereotypically nerdy male not alpha male

But the theory talks about very broad gender styles, 'nerdy male' is a relatively small subset of male, the extreme small subset of male brain theory doesn't seem like a valid model to me

It is very common for me as an older autistic woman to have medical people who think they know about autism (but are not specialists in it, usually) to take one look at me and decide I am not autistic. It just makes my blood boil, and if I didn't have a diagnosis from a psychiatrist (who took four 1-hour sessions to make a diagnosis) I would be in a lot of trouble. (Like the psychiatrist who assessed me for two hours, mostly about something else, doesn't think I'm autistic, but didn't take the diagnosis off my file because of my prior diagnosis. She also equated PTSD with flashbacks, as if that's all there is to it.) Who are these people who think they know what autism looks like in women, especially older women, when there really hasn't been any concerted effort to research the issue????

The extreme male brain theory makes me so mad. First of all, we have more androgynous brains (as per the original fetal testosterone theory put forth in the '70s) not more masculine ones. Who the hell thinks male nerds have more masculine brains than male jocks? That is not what "masculine" normally means!

And this is a theory that comes from the same person who sold people on the idea of no theory of mind or empathy either (SBC). Neither of those theories ever held up under scrutiny but the public just ate them up because SBC (Simply Bloody Clueless?) is so good at selling his ideas. I wish he were half as good a scientist as he is a politician.

I think autistic women have legal rights here that are not being addressed. Any research that uses public funding should definitely not be allowed to discriminate against autistic women by taking the male as the norm and sort of shoehorning us in afterwards. Researchers need to use both male and female data from the beginning, and enough of each sex to test for sex differences on top of everything else.

So if I'm not autistic because I don't conform to adolescent male stereotypes, what do I have? "Hyper-analytical-sensory-overload-communication-difficulties-social-isolation syndrome, not-autism"???

And that's another thing: people who disagree when I tell them I have difficulties communicating, on the basis of a few minutes conversation. Yeah, you might think I communicate just fine, but you're not listening, so how would you know???

This is such a major issue and if anyone wanted to lawyer up and go class action on sexist stereotypes coming out of research/diagnostic standards, I would be so in.

Thanks, that was very interesting to read, you make some very fresh points and it's refreshing.

It might be reassuring, though. I'm always happy to hear positive stories. They give me hope.

Okay...

Not sure whether to start from the day I was born or a tad later >.>

Actually guys, mind if I wait until tomorrow? It's 1:00am and I'm feeling washed out and a bit queasy. This stomach virus is clinging on for dear life... :-/

The argument that women are underdiagnosed is untenable. It relies on this flawed idea that girls somehow present autism much differently for some unknown reason. Autism is diagnosed based on behaviour, and there's no reason why it would present differently, to the point where barely any behavioural traits can be discerned. So what reason is there to believe in missed diagnosis?

And if this is true, would a diagnosis even be warranted? Wouldn't it mean that girls are much more mildly-affected in the high-functioning range, to the point of it not being an issue at all? Also isn't the reason for a diagnosis to provide help?

It wouldn't surprise me if autism, like other neurodevelopmental disabilities, has an increased risk for males. And girls are better protected against it. I do think overdiagnosis of boys is going on, which probably accounts for some of the difference in gender ratio in HFA.

But I find this argument has no substance to it.

“A mental disorder is a clinically significant behavioral or psychological syndrome or pattern that occurs in an individual and that is associated with present distress or disability or with a significantly increased risk of suffering death, pain, disability, or an important loss of freedom.”

That's a direct quote from the DSM 4.

While it is true that currently autism is diagnosed via observation of a bunch of behaviours, what of the distress factor? How is that measured/acknowledged/taken account of by practitioners of the DSM? How are the increased risks et al measured by that criteria? Important loss of freedom...?

I am always wanting to ask - of those who rigorously defend the view that diagnosis should confine itself to the bunch of DSM described behaviours - if the bunch of behaviours is the only way, then what is the string that holds the prescribed bunch of behaviours together to form the syndrome?

But distress can be caused by many things. And social issues are not limited to the developmentally disabled. A person could be shy, agoraphobic, have social anxiety, or be distressed by a multitude of stressors in their lives.

Also it is stated in the DSM that to be diagnosed with autism there has to be impairment. I think distress is implied in that. I don't really understand your last question. I see autism as a neurodevelopmental disorder, possibly of diverse etiological factors, that results in a similar behavioural pathology.

I think it's those behavioural traits that help the clinician to understand that it is a developmental disorder rather than something environmental/psychological. A diagnosis that has been studied by researchers for quite a while now. I think without those behavioural descriptions it becomes so vague that anyone could be placed on the spectrum. And even if the boundaries aren't defined, it's quite obvious that a diagnosis of autism would be completely unnecessary for people who don't display the core symptomatology of the condition. And wrong as well.