To think Asperger's syndrome is underdiagnosed in girls and women

[SomeoneDrankMySodaWater]

and that HCP are less likely to refer a woman for a diagnosis than they are a man?

I know that's not exactly newsworthy and I'm not posting anything revolutionary here but I have been wondering if it's really more common in boys at all and whether it's actually closer to a 50/50 split. Just that girls often get missed for diagnosis but their male counterparts don't.

I have suspected that I am on the spectrum for years but have never really been sure. Everything I've read about Asperger's sounded similar to me but there were things that just sounded "off" iyswim. It wasn't until about a year ago when I found out how women on the spectrum present differently to men that it all just clicked. The descriptions of women with Asperger's fit me perfectly.

I did bring it up with my GP and asked about getting an assesment but my concerns were shrugged off and I was told that it wouldn't be worth it anyway. He also told me that Aspergers is "rare in females" therefore he doubted very much I really have it.

On the other hand my brother who is also very likely on the spectrum asked for an assesment (same GP) and he didn't hesitate to refer him. Maybe I'm overthinking it but I can't help thinking that gender did play a part in this, especially considering what the GP said to me about it been rare in women.

Obviously Asperger's does present differently in females which is the first barrier but I can't help but think that maybe HCP would also be less likely to suspect it in females anyway and might think it's something else.

sassh

there is evidence to support your personal theory - many aspie women are diagnosed in adulthood after treatment for eating disorders.

the initial reference to the Daily Fail

link fail

www.nhs.uk/news/2013/08August/Pages/autistic-traits-may-be-more-common-in-anorexic-girls.aspx

Upyourninja, they was one of the tests I did before I went to my gp to request diagnosis. My score was pretty high, but I basically made up a document for the gp which had info about what tests I'd done and then bullet points of my symptoms -it was two pages long, and I'd looked at the diagnostic criteria to make sure that I didn't miss out things which were relevant as there were lots of things I hadn't attributed to asd until then. It helped a lot as it meant I didn't get all flustered trying to explain what was wrong and not being clear enough. I did go for a private diagnosis as although he was happy to refer on the nhs it was a long wait and things were difficult at work -I needed the protection of a diagnosis.

Statistically, thanks for responding. Sorry to hear that you had a tough time at work - has the dx helped?

One thing I struggle with is my self-perception. I went through management coaching at work with a trained psychotherapist. She pointed out that a lot of things I said and thought about myself were not necessarily true (perhaps anymore). For instance, that I had trouble relating to people. She said I came across as warm and friendly, and likeable. But it doesn't stop me feeling like it doesn't come naturally and that social interaction takes something away from me.

Thankfully I have a good deal of autonomy in my job and a great team. My husband is great and respects my need for solitude so I can calm down and destress sometimes. Again, is this introversion or spectrum? I just don't know.

It's very hard to tell the difference between introversion and spectrum, I think. I want to get on with people, I can seem to relate for a while, come across as very open etc -then it trips over some invisible line that I don't understand and goes wrong. Work is a bit better now but at the moment my colleagues don't know, just my boss. So changed have been made but I don't know how to explain to people.

I hope you don't mind me joining in, I don't have any experience of AS in girls, but my DS (10) has it. Regarding the differences in presentation in girls/women to boys/men, what would the main differences be? My DS seems to be a classic case as far as the diagnostic criteria are concerned (difficulties with social interaction/communication and love of routine all very evident), but I'm interested in how it might differ in presentation if he was a girl (I have an NT DD as well).

"many aspie women are diagnosed in adulthood after treatment for eating disorders."

The psychologist who assessed me recently told me many with Aspergers drank or took drugs to cope and were thus labelled alcoholics or addicts.

I have been diagnosed as an adult, ds was diagnosed at 6, he was obvious no social conversation, meltdowns, inflexibility of mind, lots of stimming, chewing and spinning, but DD, she is a people pleaser, good girl, wants to do well at school, but I know she is on the spectrum, she has an aversion to many foods, textures, reads harry potter over and over again, sensory seeking - cartwheels instead of walking! the only girl in the school with short hair, painfully shy, many, many traits, but whenever I mention it to a professional, I get told there is nothing wrong

Basically women hide it better -the social difficulties generally aren't as obvious upfront as we're quite good mimics so kind of figure out what to do in certain situations but without it being intuitive. I think you are probably less likely to recognise a female aspie very quickly. There are a few good websites with checklists for how it presents in girls

that's another way aspergers is picked up too, Brainy

and why it's important that autism is diagnosed as early as possible. Children don't grown out of it, they grow into autistic adults, but along the way, if left to struggle on without support, develop their own 'coping' mechanisms.

not many of those mechanisms are helpful in the long run

I had it explained to me that HF autistic children learn how to socialise by intellect rather than instinct. They learn how to act by example of the people around them.

As we socially condition girls to be quieter, more creative and more passive than their male peers, the aspie girl will pick up on this very quickly, and often develop a very convincing social mask to wear.

While inside she doesn't understand why she's expected to act why she does, outwardly she goes through the motions.

That sounds about right jenny. She'll also find going through the motions exhausting in many cases so will be really drainer by a social event even if she has appeared to enjoy it and cope well.

YANBU
My son presents very subtly everywhere but home, so I worry that he may slip through the net.
Trying to get small amounts of support and small allowances to help him cope with school is a frustrating nightmare.

I suspect I am on the spectrum, but it would never have been considered when I was growing up.

I hope that now professionals know more, fewer people are getting lost in the system.

Stat and Poulter yup, the fall out mostly only happens in a safe place, where the mask can be taken off, and there is no pressure to 'fit in'.

My kitchen ceiling shows where that place is

It's funny, but I was aware that I mimicked the way "normal" people relate to each other way before I had any inkling that I had Asperger's. (It was only through being on MN that it clicked. No formal diagnosis though).

It's difficult not to feel angry at the lack of awareness of my parents and junior school. I remember a phase when, every breaktime, I would stand outside with my hood up and my face in a bush. Just pressed right up against the bush. Blocking the other kids out. I am not aware of a single adult ever noticing, or commenting. But this was the '80s of course, when there wasn't the awareness.

I've read (of course! ) that one feature of Aspie girls is an obsessive interest in reading, and that was certainly true of me (still is). I spent my entire childhood with my nose in a book.

I'm so glad that I've found out what's "wrong" with me, yet so sad about my wasted, awkward youth. If only somebody had known, and presented me with a manual entitled something like "Humans: how they work". I feel that I would have avoided years of unhappiness.

(By the way, does anybody know the song "Human behaviour" by Bjork? I think of it as a kind of Asperger's anthem...)

There should be a thread full of parents' experiences of children with ASD masking symptoms then exploding at home, it would be good to have a collection of evidence (if it can be called that?) to show teachers when they are less than helpful!

If there is such a thread, please point it out to me so I can send it to ds's teachers :)

I've skim-read so may have missed the link to the Support Thread, better twice than not at all

www.mumsnet.com/Talk/special_needs_recommendations/a1987301-Support-thread-for-women-who-suspect-or-know-they-have-ASD-traits-or-are-on-the-spectrum?msgid=49849721

Yy stubborn, I read obsessively, but generally books aimed at a much younger audience, I was also obsessed with animals.

I fit into conversations but I can't do it for long. The more stressed I am the more difficult I find it.

I also struggle to join in big threads here, it's just too daunting, and when I do I manage to get it wrong every time, so I stick to reading them all instead of joining in.

That's really useful blanklook! i wasn't aware of the existence of that thread....shall have a good read this evening.

*DishwasherDogs, for that you could harvest some of the mentions from posts already on the SN boards, but obv ask posters and mn for their permission.

May be easier to start a thread like What would you like your dc's teacher to understand about masking?
I'm sure it will get some telling it like it is responses as it's the thing that's so infuriating for parents to deal with.

It is interesting, we've had years of many people not believing DS has AS as he doesn't display the visible characteristics - meltdowns are rare and only occur at home, he is a model of good behaviour at school (Yr 6 and I've never been asked in to speak about anything). He has sensory issues but they are subtle (fidgets a lot, fussy eater but doesn't do anything that makes him stand out from the others), copes ok with routine changes. He is kind and gentle and tolerated well by his classmates although he finds friendships hard work, he gets invited to parties etc and is fine in mainstream clubs and activities on the whole. He was diagnosed very easily at the age of 7 (10 now) but I still often get people saying "you'd never know". He has definitely learnt social skills by rote not instinct and has excellent coping strategies.

Queen - I would also like to read your research.

OP - YANBU.

Hello all

We thought some of you might be interested to read this webchat with Carrie Grant, who's a campaigner for the National Autistic Society, about bringing up girls on the autistic spectrum.

That's very interesting Jenny.

Is there research to back that up? It does make sense to me but kind of suggests we could 'make' boys with autism appear to cope (not cure obviously) better if we socialised them harder - which seems a bit puzzling/wrong (but then maybe that's why they say early intervention is so important?) I really have no idea, it's just something I've wondered about a lot.