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.

That is encouraging 1805. I wasn't diagnosed until I was 27 and only off the back of my own research.

Thornrose, I'm not sure what would help your DD, I'm so sorry. I've spent my whole life feeling like I was wrong, some sort of failure. Finding out I have asperger's/ASD made me feel less useless!

statistically it's just so raw at the moment. DD was diagnosed at 8 and had counselling to come to terms with her diagnosis. She has hit 15 and resolutely refuses to acknowledge her AS is an issue. She has NO friends, she is lonely and isolated. She has recently become paranoid and anxious and has "bad thoughts" that people don't like her. If I try to discuss it with her she gets incredibly angry and I have to walk on eggshells. I hope she can come to terms with it in time. I love her so much and I can't bear to see her hurting so much, sorry to go on.

Don't be sorry, if it helps you to talk then do, please. I have very few friends - the expression "familiarity breeds contempt" is one I've heard applied to aspie girls in particularly and it's definitely true for me. I can do quite well on first impressions. I'm good at interviews. I start a new job and seem to get on well with new colleagues. Then it all just seems to go wrong, and relationships slide from borderline friends to cool and aloof colleagues. Happens every time. A lot of people think that aspies aren't bothered about people or friends but many of us are - we just can't get it quite right. That loneliness and isolation is definitely a feature of my life.

My DD was diagnosed at the age of 10 and I am gradually realising that I must be on the spectrum too as I recognise so many of her struggles in myself. She is struggling with significant depression at the moment which is very hard.

Note that heart attacks also present differently between men and women.
www.heart.org/HEARTORG/Conditions/HeartAttack/WarningSignsofaHeartAttack/Heart-Attack-Symptoms-in-Women_UCM_436448_Article.jsp

I have no idea but it's a very interesting idea. I didn't know there was a difference in how ASD presented in girls and boys and just thought it was rare in girls.

In 9 years of teaching I have taught 1 girl with aspergers (possibly 2 but the other had a diagnosis from the US which nobody in the UK agreed with!) and approximately 30 boys.

Could that kind of difference all be down to under diagnosis?

Dd is virtually mute at school, she just doesn't talk. She does odd things which girls find weird. She sat crying on the sofa next to me tonight. She said that she thinks people think she is the weird girl and that nobody likes her. I reassured her and told her that it's impossible that people could dislike her. I can see why they find her odd or weird though, teen girls been what they are. It's SO unfair, I am the only person she is comfortable with. I see her being funny and engaging and a beautiful soul inside and out. She wants friends but maintaining or just being around friends makes her overwhelmed and exhausted. I am so scared for her future.

She sounds a lot like me in a lot of ways Thornrose. I still feel like that - except in my case it's my husband I cry at! Sadly some people might not like her - I'm sorry, that sounded blunt, I don't know how else to put it. I'm still getting my own head round it. But...especially if people don't know why you behave a certain way then they can put you in the "I don't like" box, or at least the "not my friend" box. People are attracted to people who are similar to them. Your DD is probably feeling like it's always going wrong somehow when she tries to make friends but she doesn't understand what she's doing wrong as it will be such small things. I spent the whole of my school days trying to fit. I wanted to fit - spent a fortune on clothes, tried to do what was expected but somehow I just never quite got it right

Manicinsomniac, it can be quite different in girls and if you have generally dealt with males and been taught the more male characteristics you could well have taught aspie girls and just not known. At primary school I was the goody two shoes answer all the questions bright girl, bit sort of on the fringes of the social groups. At high school i was the kind of unremarkable girl, again sort of on the fringes socially. Most of my teachers got a shock with my exam results as even though I'd got good grades the whole way through they just didn't really notice me until the official big exams IYSWIM. We're not nearly as overt as male aspies

But you have a husband Statistically and that alone gives me hope! Dd has given up on making friends, she talks online and on Facebook but likes to pretend she still has RL friends. I just go along with it. Thanks for talking I really needed it tonight, I was going to start a thread and this one came along. I'm off to bed.

OP, apologies for hijack.

Sleep well. If it helps to talk or there is anything I can do to help please shout. I wish I'd known when I was younger - so much more would have made sense! If it's any comfort my husband has put up with me for 10 years now!

That's very interesting statistically, thanks. Yes, I teach/have taught a lot of girls who are quiet, studious and socially on the fringes. And others who just don't seem to understand how friendships work and end up in small conflicts an awful lot. I tend to think of them as just shy or a bit 'different'. Maybe some of them do/did have AS.

thorn I met my DH through a mutual 'friend'. By 'friend' I mean, a friend of DH's who I was a bit obsessed with & used to bombard with emails & texts but who didn't seem to mind & just let me be a bit weird. He introduced DH & I online & we got chatting. Said friend then arranged for us to meet, but without telling me... he just invited DH along when we were meeting up. He then pretty much forced DH into asking me out he was painfully shy & I agreed, at least in part because I'd have done anything DFriend told me to because I was glad to have someone tell me how to behave socially! I was pretty much bullied into going out with DH but I'm v glad it happened now!

It's entirely possible to go through the first part of your life without any proper friends but pull it together later on. I'm now 28 & have DH, 2 DSs & one actual proper can-be-painfully-honest-with friend who says "me too!" to pretty much everything I admit I struggle with! Much of my social interaction happens via the internet still. It stops me feeling lonely.

There's no chance I'd have discussed any of it with my DMum as a teenager though. I haven't even told her now! I think a lot of that is to do with not knowing how to express it. DMum would be terribly offended if I attempted to discuss it via the internet/text but I'd struggle to explain myself properly face-to-face or on the phone & would probably just end up agreeing that I was 'fine' just to end the conversation & stop my head spinning.

Give her time. She's still young. Yes, she's hurting now but she's got many years to heal, accept herself as she is & move on. Just be patient & wait until she's ready for you to be there for her!

My DD (12) is very intense with other girls and wants to be soulmates and have deep heart to heart talks and gets very jealous if they want to have other friends. I keep gently encouraging her to be less controlling but it is so hard.
I keep telling her that she will find more people 'in her tribe' when she is older and goes to uni. She gets on really well with adults, who are blown away by her conversations about history, politics and religion. What she can't do is just fit into a mainstream group of girls.

This may have been mentioned already, sorry if I've missed it here, but I recently read a piece on BBC about the Dr who discovered it and how he said it only effects males. Also said that this notion still remains to some degree in the medical proffession and so it is less likey that a Dr will consider it when presented with a female patient.

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 got a diagnosis by going private. My GP asked what difference a diagnosis would make!! The answer is not much apart from saving my marriage and job.

A clinical psychologist said that I couldn't possibly have it due to the fact that I was working and a Dr specialising in mental health failed to spot it even after I suffered a meltdown in his office.

I have read that it is often misdiagnosed as bipolar in teenage girls as well.

I don't think anyone at my girl's school had an ASD diagnosis, but looking back I think at least a few of my friends had it!

Yanbu.

My dd is 4 and currently undergoing assessment. I was told we may not get a diagnosis until she's 7 or 8. It's glaringly obvious to myself and those that know her, but she masks so well at school. She does have major sensory issues though which she doesn't hide.

Luckily her teacher has a daughter who is an aspie and the senco at the school is brilliant. So they're supporting her well at the moment.

This is her 6th week at school and yesterday was the first day she didn't have a meltdown in the morning . So finally settling in and it's sodding half term next week so will have to start all over again when she goes back!

Sorry for the hijack .

I do think there needs to be more awareness for girls and autism, it seems to be the health professions who need educating.

My DD has just been diagnosed but it has taken 4 years of pushing to get her there. She is now 8. Her old school cidn't believe us as she was uber compliant at school, we had the meltdowns before and after as a consequence of school. There was a very good programme on Radio 4 called All in the Mind about girls and aspergers, it may still be available on a podcast.

My 3 year old was diagnosed with it last week after only a 2 month wait. I was shocked at how fast it was. The paediatrician who made the diagnosis said it was such a clear case of aspergers that even looking at the criteria would be a formality. Perhaps it helped that her father is a clinical psychologist, so we were taken very seriously, however it was preschool who first raised the issues not us - we didn't see it! She is a very outspoken little girl who doesn't like the usual 'girly' toys eg she likes cars and insects. Maybe if she had been obsessive about horses or dolls and was happier to play quietly they wouldn't have thought anything about it. Either way, once we began the diagnosis process it became clear that girls present very differently to boys. I am sure that it must be 50/50 and girls just mask it better, or doctors are less likely to look for it in their behaviour.

My DD2 is 7 and we have seriously thought she has HFA/Aspergers since she was 5, having raised 'niggles' since she was 3 and noticed 'quirks' since around 18 months.

I explicitly taught her eye contact at 4 years old ('we look at the lollipop lady, smile, then you can look away again'). Her eye contact isn't fantastic but she does look at people briefly.

She's incredibly literal. Has some sensory issues. Incredibly sensitive to pain. Gets very hot very easily.

But, she's very passive so doesn't cause schools a problem. She, however, is in her third school because she couldn't cope with the transition from one class to another in year R-1, in one school, then year 1-2 in another. She is now in a much smaller school where they spend 2 years in each class.

She seems to cope with 'big change' (e.g. New school) much better than small change (e.g. New class, where the tables are the wrong way around, the furniture is in a different place, etc.).

We're getting nowhere fast in seeking a dx though. I think she'll probably be a self-harming teenager before some bright soak will say 'have you ever considered ASD?...'

I think aspergers is over diagnosed in men rather than under diagnosed in women.

My son and daughter both have an autism diagnosis. Ds was diagnosed at 3 and dd at 2. They are mirror opposites of each other despite having the same genes, diagnosis and upbringing. At diagnosis dd was thought to be more severely affected than ds however dd has far more awareness of the need to meet social norms than ds has and so functions better socially and communicatively.
Ds has always received better support though because his challenging behaviour was always an indicator of how much he was struggling with the environment. Dd hides all of her difficulties and the stress is shown through migraines and self harm (rarely now thank God) which because they don't impede on the well being or disrupt the learning of others, schools seem to think it justifiable to ignore.

Lougle dd did two years in each class throughout Primary as we recognised early on that it took a term to introduce her to a new teacher and another term for her to become accustomed to a new class so she always went in mixed year group classes (three classes for every two year groups) It worked really well for dd. Obviously having a diagnosis and a statement did mean that I had input into which class and which teacher suited her needs best and dd thrived in Primary.
She is just coming to the end of the first half term in Secondary, the positives would be that she likes having a rigid timetable and it helps that she is top stream away from the more disruptive pupils and the SENCo seems to know her stuff the negatives would be that the TA support is rubbish, they have no real understanding of autism beyond the very basic stereotypes which dd doesn't meet at all and sensory issues in a 1800 pupil school and curricculum content (way above what she if emotionally ready for even if academically she would have no problem) makes every day a challenge. She is with good friends from Primary so copes socially in spite of an old Primary peer doing her utmost to marginalise her.

YANBU, and interesting to think about.

I've scored over the threshold for every online aspie test I have ever taken (the whole thing is very interesting). I am also strongly introverted though and I wonder if this clouds the issue.

Prompted by this thread, I just took the Ritver Autism Aspergers Diagnostic Scale. It doesn't mean much without a clinician involved but I scored at least double the threshold for ASD diagnosis and was only a few points off the average score for those already diagnosed.

I'm not sure what to do with this information really. For me at least, it puts into context the pretty terrible time I had at school. No one who knows me believes I could have ASD but I have strong memories of having to learn and imitate behaviour to fit in. Even now I feel like I'm working through a checklist sometimes.

Does anyone else ever feel like this?