Women and Aspergers syndrome

[ThereIsACarInTheKitchen]

I am a 23 year old women and I have Asperger's. I wasn't diagnosed until three years ago when I was 20 but tbh it was clear that there was something "wrong" from a very young age.

The road to diagnosis was a nightmare for me tbh. Even getting past the first hurdle of getting my GP to refer me was a nightmare and he even brought up that "it is very rare in women so highly unlikely you have it" . It took several appointments before he even referred me.

For the longest time it was just accepted that Aspergers was much more common in men than in women. Even now I will still often hear that "Aspergers is rare in women" or similar. It wasn't until recently (over the last few years I would say) that it really began to become clear that it wasn't as rare in women as was once previously thought and that women will often go undiagnosed because they present differently to men on the spectrum and of course because of the male bias.

I worry about this though. I know other women on the spectrum who have had trouble when it comes to getting an assesment and having their diagnosis taken seriously.

I do think that there needs to be more awareness out there about how women and girls present differently to their male counterpoints. It's getting better but it's still not there yet imo. I also think there should be a different diagnosis model for women and girls as the current one is based purely on how men present with it.

[ThereIsACarInTheKitchen]

I don't really know what I'm asking here if I'm honest.

I do think that this is a feminist issue and there does need to be more attention brought to the fact that women do present differently.

[CrispyFern]

Yes I was just thinking today it shouldn't be so hard for girls to get a diagnosis. They present differently, so why don't they have a different girl checklist, girl things to look out for.
Start a campaign!

[CrispyFern]

It's not just ASD either.
Plenty of things are the same.

[bialystockandbloom]

I think you're absolutely right, there can be a huge difference in the way that as or asd presents in boys/men and girls/women. I've also heard many many instances of girls being overlooked and brushed off because its seen as a male condition. I don't have personal experience of girls with autism, I have a ds with asd, but have seen several times even just on MN instances of girls being dismissed with comments like "girls don't have autism" etc.

Have you looked on the SN section here? There's also a thread for women on the autistic spectrum (sorry cant link now), which may be interesting and helpful to look at.

[FayKorgasm]

Girls being diagnosed with aspergers is rare but women being diagnosed is on the rise. Even though dd was tested and is not on the spectrum I still think she has aspergers. She ticks almost every box for aspergers in girls. But no one wants to listen to me. Instead I have educated myself and tried to implement things to make dds life a bit easier.

[BrainyMess]

OP Ive just been diagnosed with ASD level1 (aspergers) at the age of 47

I think awareness of ASD is abysmal generally but truly awful in women and girls.

I think its feminist issue and an economic one.
If it is proved there are as many girls with Aspergers as boys all ready creaking support services may be stretched to breaking point.

[NotCitrus]

It seems to be being taken much more seriously and getting more awareness in the last couple years, partly because there's a realisation that a lot of diagnoses of depression and anxiety (in both men and women) are down to undiagnosed high-functioning autism, so it may mean that services don't get an additional burden overall except for diagnosing, but that people get more appropriate support.

[NotCitrus]

I have been shocked recently at how little clue schools and workplaces have re ASD, because in my family and community and friends groups it's almost the norm, half have been diagnosed and many of the rest could be, so I forget that apparently that's only 1-3% of the population, so in a 2-form entry school, any teacher might meet a ASD kid once every 3-4 years, given some will be at special or private schools in disproportionate numbers, and many of the ones in their classes won't have yet been diagnosed.

[Quitelikely]

OP can I ask what your signs were if you don't mind

[Callani]

I think it's a feminist issue as well OP - it's a common problem with medicine (and pretty much everything else too) that the "average patient" is considered to be a white male. So anyone who isn't a white man is more likely to be misdiagnosed, suffer unexpected side effects of treatment and have poorer health consequences as an outcome.

Not only does it affect Autism diagnoses, but it also impacts on diagnoses of many mental health disorders which present differently in women and physical health problems e.g. female heart attacks go undiagnosed due to different symptoms and a belief that slim women can't have heart attacks.

I wouldn't be surprised if there was also a higher tendency for doctors to minimise women's side effects, or disbelieve women more than men when they report issues - the many stories I've heard about women being told to stick with contraception that is giving them hell would support that but I'd like to see studies into it as well.

[ThereIsACarInTheKitchen]

You see I had no idea that other medical conditions presented differently in females until recently. I do think there needs to be more awareness of this.

[ThereIsACarInTheKitchen]

Quitelikely there's loads, too many to list right now. I admit that some of my signs present quite subtlety but then there were things that were just so obvious that I don't know how anyone could have overlooked them.

I will try and come back tomorrow to go over the signs I had of ASD from an early age.

[ThereIsACarInTheKitchen]

I should add that I am tired so sorry if I'm not making much sense

[NotCitrus]

Thank you OP. It's been suggested I get assessed for ASD (having previously been assured by researchers it was very unlikely I had it, but then they weren't doing the same detailed diagnosis), so more info on the signs would be most helpful.

[mummytime]

There has been some recent publicity because the symptoms for a heart attack in women are different from men - I can't quite remember how.

I think more girls are being diagnosed, certainly under 10s. But there are girls I've known who probably were, but weren't spotted - just often seen as quiet. Most women I know who have been diagnosed were only spotted after their sons were diagnosed. So some women I knew in the past and may have been but don't have kids are either totally undiagnosed or misdiagnosed. The later is tragic as some have had awful treatments for things they may not even have.

But then again, there are men of my age who were probably never diagnosed either (unless maybe if they had children).

[Zazzles007]

Plenty of things are the same.

I would have to agree with this. I had my own health challenge which required that I was signed off work for a period of time. My male GP said "Don't succumb to being a victim of the condition," to which I responded in a shouty manner that I wasn't being a victim (how fucking dare he!). He realised that I was serious about being signed off, and began scribbling furiously on his pad. I have found that the slightly shouty stance works in a corporate situation as well . Seriously, men really, Really, REALLY have to fucking use their ears more than their mouths sometimes when it comes to active listening.