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.

Yes, it is. The presentation is massively different in males and females with females being better at hiding the social difficulties they may face.
I did a research project on his a few years ago, it was a fascinating topic.

yanbu. I quite clearly had ASD as a teen, and self diagnosed myself 10yrs ago. I finally got an NHS diagnosis this year, I had to fight for the referral though.

I know a few other mums who I assume have ASD, all very different in our own ways but there's something that I recognise in them.

There's no support if you're working and otherwise ok though. But at least a diagnosis means you can understand yourself a little more.

I did a research project on his a few years ago, it was a fascinating topic.

Do you still have it?

May I read it??

:)

How do females present then?

I score quite highly in that questionnaire.

Yanbu. I've been fobbed off repeatedly by HCPs who seem focused on how aspergers presents in boys and men. I was actually laughed at by one doctor who said the fact I could hold a conversation meant I didn't have aspergers. Because no one with aspergers can have a conversation

Men and women also have wildly different stroke symptoms.

There is a big difference in men and women for many things.

Doctors forget..!

What are the differences please? I would love to know

I have a ds, 11 with aspergers, there were several other dc at his primary with AS, all boys apart from one.
I've been to quite a few open days for AS, where other agencies would be there to offer support/guidance/signposting etc and hardly any of the dc were girls, it seems accepted that it's "rare" in girls from my experience.
Many people are slipping through the net, lots of them will be girls.

QueenOfLouisiana- I too would be interested in reading it, please.

Ummmm....I'll have a look in the study! I did it about 6 years go so some of it will be very out of date (some of the research I read was quite new at the time).

A lot of the research talked about the idea that girls realise that thy need to do what everyone else does-to fit in with the crowd. Boys don't have that level of awareness at the same young age.

I am now a SENCO, with a number of children with ASD on the SEND register-all boys.

YANBU, this is a problem and should be more widely recognised.

Interestingly, it doesn't just apply to ASDs, even serious physical health conditions are diagnosed later in girls than boys (e.g. cystic fibrosis: aje.oxfordjournals.org/content/156/2/165.short). Gender bias in primary healthcare providers (GPs in UK, I think they have different system in US) is a massive issue and should be covered in medical schools, because girls and women end up with disproportionate levels of suffering and lack of resources (this extends to primary education where boys are more likely to receive additional resources as a result of learning difficulties than girls, even when girls are similarly behind, because they go unnoticed).

The empirical evidence is quite obviously contrary to the anecdotal evidence often spouted by clinicians, claiming that women are hypochondriacs and more likely to fuss about something, because evidence is women and girls need more severe symptoms to receive treatment, and will be diagnosed later in most cases, than men and boys suffering from the same condition.

YANBU.

I had no idea why I am "different" to others until I read about Aspergers in women and girls on MN.

Suddenly the inside of my head made sense, aged 37yo! No formal diagnosis, I've done an excellent job of covering it up should've been an actress but since the lightbulb moment I've been much kinder on myself and understand myself much better.

I sent my dd, with AS, to an all girls school. I'm beginning to think it was a massive mistake as the SENCO seems to be at a loss. Even if boys present differently it might give her something to go on!

Yanbu.
Pretty sure I am an Aspie.. Dd almost certainly is. It's like finding a coat that fits tbh.
Getting anyone to even see dd is proving difficult.

I first wondered about this at least 10 years ago. Now I know if there is a gender difference it is much less than was once thought. Also the reason why girls used to be "more severe" when diagnosed was that they were missing the "milder" forms. Tony Attwood has done a lot on this.

YANBU - it needs to be shouted from the roof tops, so healthcare professionals and teachers hear the changes in thinking. In my DCs primary school they have been used to about 1 in 30 boys being ASD, but got a shock to realise that at least in year 6 the same ratio held. Girls also tend to be less violent and more quiet/withdrawn, which leads to them being seen as less of a "problem".

My dd, who's 19, was diagnosed with Aspergers last year. Her twin brother is at the severe end of the spectrum and was diagnosed at 4.

Her difficulties and differences began to show themselves when social interactions became more complex amongst her peers at about 9/10.

I have a link www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/gender-and-autism/women-and-girls-on-the-autism-spectrum.aspx

I have no ability at this time of night, in this stage in the week to work out if it is clickable. sorry, knackered student nurse

I have a DD with suspected aspergers. We are currently awaiting diagnosis. I had no idea as everything I've ever read about aspergers didn't really fit her. Her teachers picked it up, told me it presents differently in girls and gave me some reading material - I can't thank them enough. Apparently mental health problems are extremely common in teenagers and women with ASD, especially if undiagnosed and not receiving the support they need.

DD1 is diagnosed with Aspergers. I pushed for the assessment because it was obvious to me why she was different but I wanted her school to understand her. She was diagnosed at the end of year 2 having started the process in reception.
If I hadn't gone to the GP to start the process the school would never have done anything. I have been on several courses and support groups since and have hears it said several times that a diagnosis in girls is unusual as they are much better at masking their differences than boys.

My dd was diagnosed at 8yo. A very astute nursery teacher flagged up concerns when dd was 5yo. Diagnosis was relatively straightforward for us, ongoing support is another story.

I have a book called AspienGirl something or other.

Wish, wish, wish I read it when I was teen. Has helped a lot.

33 now and am happy as I am but back then I was desperate to know why I didn't fit in.

It actually hurts when I look back at my childhood. I was so odd.

I'll try to find a link and you can all buy it for your lovely DDs.

Here:

www.amazon.co.uk/Am-Aspiengirl-Characteristics-Females-Spectrum/dp/0992360900/ref=sr_1_1?ie=UTF8&qid=1414015388&sr=8-1&keywords=aspiengirl

Is mostly thoughts and quotes from other AspieGirls or their parents but it's very comforting. If I'd had it when I was young my life would've been completely different.

I went to my GP about my depression a few months ago & mentioned I'd like to be assessed for Aspergers. She kindly pointed out to me that "there's no magic fix" as if I were looking for an easy way out of my depression by diagnosing myself with a lifelong disability, "there's no government support for adults" except for the safeguarding that would kick in should I be in employment, which I can't do at the moment because of my issues & "the referral waiting list is a year long because of people like me referring themselves" because I'll just spontaneously recover from this issue that's affected me for the last 28 years & a year is such a long time to wait. She eventually agreed I should book a double appointment with her which would give me time to "state [my] case". I booked the appointment but cancelled because I couldn't face trying to explain myself to someone who I didn't think would understand. I've not been back to the doctor's since, despite having ongoing mental health problems.

I strongly suspect DS1 is on the spectrum so my plan is to get him a referral, wait for his diagnosis & then push for my own referral. That way they're slightly more likely to take me seriously & I'll know what the referral/assessment process is like so it won't be quite so terrifying to do for myself!

Hmm, my dd is so desperate to fit in and be seen as 'normal' the mere mention of AS causes major problems right now.

How do you address the issues that AS brings if your dd refuses to acknowledge it's an issue so gets no comfort from other Aspie girls?

Sorry, this is not the right thread for my rants.

dd diagnosed earlier this year, and I am currently attending a workshop for parents of newly diagnosed children.
The ratio of girls to boys there is around 50:50 which is really encouraging.
Interestingly, the girls seemed to have been diagnosed around age 8-10, whereas the boys are older, around 12-14.

I am fascinated by the differences and the ways girls in particular struggle.