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.

i don't know about research, i'm 'just' a mum to two aspies

i also don't understand what you mean about making boys cope. do you mean in the same way girls learn to?

because from where i'm sitting, that's not a very comfortable place to be. i see my DD going through some bloody awful meltdowns because of the hard work she's put into 'coping'. she doesn't 'cope', she hides her own disability.

apologies if this isn't what you meant though

YANBU. during the course of my DDs diagnosis, our CAMHS person said 'we know that we currently under-diagnose girls.' I also spoke last year to a social worker whose specialism was working with young people who was very insightful about how easy it is for girls to slip through the net.
I lived this experience myself growing up (and experienced the secondary mental health strain) and recognised the signs when my daughter was tiny. It's good for us all to be having these discussions as its useful for raising awareness, particularly among teaching and some healthcare professions who are looking for the more classic manifestations of boys.
And it's my personal belief that if you apply the 'social construct' model of thinking to girls on the ASD spectrum they can be in a triple bind of disadvantage - they have an 'invisible' disability, they are 'less visible' than their male counterparts with a similar disability (and therefore sometimes less likely to receive intervention) and the nature of their 'social mimicry'/masking renders them further invisible in terms of their disability.
I could go on...but I'll try not to. It's a subject which occupies a large part of my brain shelf-space!!

No I'm sorry - that's not what I meant at all! It's quite hard to articulate though.

I have a DD who might be on the spectrum but 'appears to cope' a lot of the time so isn't going to get a dx (unless she completely falls apart later).

It feels like the appearing to cope is a complete timebomb, but I teach her it because it helps for now.

The gender stuff bothers me because I really don't know why children seem to react so differently and I like to fantasize about a magical inbetween place where if we socialised our children according to some magic formula, they would still have ASD of course, but there appearing to cope would be enough to mean that they did mostly cope.

Very sorry for my rubbish phrasing. It's hard stuff to talk about.

being able to mask does not mean a person won't be diagnosed though, it simply means they have learned to mask when they feel they need to.

how old is your DD, TeWi?

has she been through any assessments at all?

She's 5.

We're going for SPD at the moment because that is obvious. But she is reacting okay to social stresses at this age.
she didn't cope very well with preschool at all (fine when there, horrendous either side) so it is noticeable that she has 'improved' but I'm aware she might just be better at masking now.

Please can somebody tell me some of the traits in girls becAuse I worry about my daughter who us painfully shy and obsessed with certain things.

I thought this was normal because I'm like this (also suffere/ed anorexia and addiction)

The person who said they put their good up and their face in a bush, u thought it was normal to feel like this in social situations, that's not a joke btw

I don't know, it's been years of going backwards and forwards on this.

My DS has some slight speech problems (due to his hearing) and at his first SALT appointment I was asked lots of questions which I know we're screening for autism. For him the answers are all no, for DD they are all yes! But she didn't have a speech delay so it seems all the other symptoms are just deemed spectrum of normal (hate that phrase).

Am going to read the webchat now.

DD was almost 5 when she was dx with ASD, SPD isn't recognised locally, but she has had several assessments by the CAMHS OT, who has written reports detailing significant sensory processing difficulties (so basically SPD without the name)

for the past year, she has been plodding along, keeping it together in school but falling to bits at home

now she's in y3, she's realising how different she is to her peers, and doesn't understand how/why. she describes it as feeling something is wrong all the time - but doesn't have the emotional maturity to cope with this.

sensory processing seems to be an area that coaching and exposure can have positive results though, if you can get a dx, that will be a great help in accessing support.

Also I find change to routine very distressing so for example if ine of the kids was I'll off school I would be distressed. Also a very high achiever academically .

I really hope we can get a dx, I need to speak to senco and find out what the system is here. I think we will be completely stuffed if we can't, as I really can't see her getting the ASD one purely on the basis of past issues. I hadn't really considered it wasn't as I know another child with just a spd dx, but they have come from a different county...

Thank you poulter - that's very useful.

Thanks for all the links. I'm curled up with my phone ignoring the world because my DD and I are on holiday with my folks, and a few days in, I'm completely overwhelmed with the constant talking, interaction, and generally being reminded what it was like to be a teenager. My folks are lovely people but it is just bringing back the awful memories of being stuck at home as a late teen.

Solitude is so restorative for me. I'm desperately tempted to say I need to work a bit this afternoon just for some peace!

Blanklook, thats a good idea, no idea if it would help matters, but it's worth a try :)

Dd1 was diagnosed with AS at the age of 4, was fairly easy to get her diagnosis. I havn't met many girls on the spectrum but have met a few boys, dd is similar to the boys we have met, one of the differences I have noticed ( maybe it's just with dd1 ) is that boys seem to struggle more with aggression, dd1 is more likely to cry than she is to lash out ( she cries quite a lot ), she can be verbally abusive in her tone of voice rather than her language and will never back down.

I do believe I'm on the spectrum but then again I think a lot of us are, it just depends how far along the spectrum we are and if it warrants a diagnosis. I'm not a ver sociable person, struggled a little at school, chewed my clothes, hated loud noises and struggled with social skills, I don't think getting a dx would help me in anyway. Both my dd's are on the spectrum enough for it to effect them day to day ( even more so for dd2 who has a lot of sensory issues ), dd1 has got through ms school with little support but I don't think she would have done this without a diagnosis, her teachers and friends are very understanding, hopefully this will continue in high school.

I have a personal theory that many anorexics have asperger's. The fanatical calorie counting - if you ask an anorexic how many calories are in a digestive biscuit (or pick other food) they will reel off foxe, asda, sainsbury etc etc, there may only be a 1 calorie difference but they know them.

I think this is quite a leap. I know someone else has posted some research too but still, I don't know. One of the things continual starvation does is alter your thought processes, emotional reactions and coping processes anyway. So the effects of an eating disorder will start to look a lot like factors in ASD. It doesn't mean that the person would present like this if they were healthy.

I have been anorexic for more than 15 years. I am almost certainly not ASD as there was nothing at all to suggest this when I was a child. I fitted in easily, was very social and outgoing, involved in everything going, relatively calm and placid and just generally neurotypical. Since having anorexia I could easily, at times, be mistaken for someone with aspergers:

I certainly, as outlined in the post quoted above, know the calorie counts of almost all foods including different brands of the same foods. I learned many of them by spending endless school lunchtimes hanging round the supermarkets reading them and endless hours as an adult trawling through calorie books and calorie sites. Not because I had an autistic compulsion to do so but because it was important to me know so that I didn't eat too much. Very different motivations.

I now find it very difficult to cope with an overload of any emotion, positive or negative. As a teenager I could go into screaming tantrums over almost nothing. I self harmed as a way of getting rid of any feeling that was too much. I still hyperventilate and have to sit in small rooms rocking until I can calm myself down. But this isn't autistic sensory overload, this is an effect of malnutrition.

I am much less social and outgoing that I used to be. I don't automatically know how to act in large social situations and I sometimes feel uncomfortable, like everyone is watching me and nobody likes me. Again, not an aspergers thing, a side effect of mental illness.

I could go on but I'm making the same point. I suppose it essentially comes down to correlation not equalling causation. I would distrust any medical studies showing a link because so many of the side effects/symptoms of eating disorders are the same as so many autistic traits.

I have to say in the case of my dd2 aged 5 her diagnosis with autism at 2 was completely straightforwards , she behaves exactly like a boy with autism

manicinsomniac - that's interesting, as there does seem to be a link between malnutrition and ASD. Many ASD kids have limited diets due to sensory issues and/or allergies which affect absorbtion in the gut - or both. It can be a bit chicken and egg to try and figure out which way round it happens sometimes, imo.

clothespeg interesting and timely you should say that, am just about to have another go at Robin Pauc's brain food plan with DD as feel we are currently having things massively magnified by a self-imposed restricted diet of basically carbs and sugar, despite all best efforts...

DD is very restrictive in her diet too, yongnian

carbs and sugar, very little in the way of fruit or veg, she's even stopped eating ketchup now

she is very perceptive on what is socially acceptable, and has started to ask why 'fat is horrible' and how do we choose the bad words to call people.

There's also a theory that sensitivity to gluten and dairy proteins can cause them to be absorbed in a way which ups the levels of morphines in the body (I'd have to look it up to be more precise), which makes them addictive in the same way as other morphine-like drugs.

i just found this, seems to be similar to what you're talking about Clothes

and here

goes into more depth about the opioid effect

I have always suspected i have AS.

I never fit in as a kid, i have obssesive behaviour that is beyond a normal 'oh my god i love it' to 'its my life'.

I score highly on any test ive seen for it but no GP will refer me and say i am just depressed.

I have my own coping mechanisms, my own safe places where i can be myself.

But because im female apparently its just too rare.

I'm also 30 and married with kids now

Yes that's it Jenny, thanks. Interesting articles. I'm leaning towards it as DD had a dairy allergy when younger (and may still do, just not as obviously), and has some anxious and slightly obsessive behaviours which suggest Aspergers, though has not been diagnosed. Fussy with food, loves biscuits, cereal, cheese, processed meat like bacon/salami.

(Sorry for the slight derailment.)

I suspect I have AS after reading about how it can present in girls differently earlier this year. It was like reading about me!

Like others here, I spent a lot of my childhood (and since) with my nose in a book. A combination of a place to hide, and a world that makes more sense because it tells you what someone else is thinking. I didn't ever think about how much of an "obsession" I probably have with Harry Potter. I'm almost always in a state of "re-reading" it and I often refer to it to understand other situations. In particular... listening to Stephen Fry read it on my ipod shuffle was a way I coped with starting to go out again after agoraphobia.

There are lots of other things too - including many things here that others have mentioned. I feel a lot better now, realising that finding the social stuff hard isn't my fault. It doesn't make the social stuff any easier really but it means I no longer feel bad about it, I just know I have to try and work around it.