Help! Are there any women in this Community with ASD

Hello, I too am very new here but feel it's been a long time coming. I am self diagnosed hf asd and inattentive adhd from what I have read. I have an appointment with the mental health nurse (after seeing her last October) to discuss wether I meet the criteria for a referral but everything I've read on the subject since October and difficulties that my teenage son is experiencing (failing at mainstream school) have made me want to fight for a diagnosis. Just wanted to say I'm here! 

Congratulations on the new contract!!! I guess your parents belief in you has lead to you developing your own strong self belief and determination.

being a fighter can be tiring though...as your pointed out

My ability to deal with the system is in part due to my experience of disability as a child.

My parents did not see my neurological deficits as a reason to stop me participating in physical activity. If it took me 5 times as long to learn to ride a bicycle, that didn't mean I couldn't, rather it meant I was going to need to have encouragement for longer to support me to achieve.

The only noticeable deficit now is my handwriting and that I have negotiated adaptions for my education at university and work subsequently.

Doing this for others feels good, my biggest challenge is recognising if I'm getting too fatigued to negotiate with neurotypical administrators with a calm mind. But I'm getting better at knowing when to stop.

A long term special interest of mine is health literacy: reshaping health systems to support engagement by all. Turns out special interests can turn you into an expert.Today I got a new contract which demands I use this for public education.

I guess I'm lucky my family believed in me. I don't know how I would have learned otherwise.

It sounds like you have your work cut out but I'm pleased that you have the support from family, friends and colleagues...those that tend to fair best always seem to have a fighter behind them to give them a voice and gain access to the support that they so readily need in order to give them a sturdy foundation and strategies to take them forward in life.

what for me has been quite telling in this community is the amount of people "reaching out" to state - "this is me" but can't seem to articulate their wants and needs going forward as the support is not simply there or they don't know how to access it. It is like being stood in front of a locked door but not knowing how to ask for key to unlock it and fear of what lie behind said closed door.

Empathy abounds, nevertheless...and we all reach out to show solidarity to others...which is a comfort and we all recognise that each of us have our own locked doors....we speak but don't seem able to communicate very well...if that makes sense

Hang in there....

I've got a colleague who is a Gestalt trained practitioner and who has worked with vulnerable youth. She is willing to see SD20 on the disability funded counseling rate and if they don't gel after 2 sessions she will facilitate getting another therapist to work with her. SD20s psychiatrist was a bit reluctant to agree therapy but I pointed out that we could not be seen as unbiased about her mother's behaviour, so the risk of not having an independent supporter outweighed the risk.

We had a significant disclosure of within family violence from her last night which could have been used to remove SD16 from her mother in the UK, but our safeguarding is not anywhere near as sophisticated. 

My family joke is we all sigh with relief when the babies show a sign of neurodiverse behaviour because we would not know how to raise s neurotypical child

Access to appropriate therapy is also a hot tinder box that very few dare to try and open 

So pleased that there is positivity amongst the adversity of your family. It is such a lottery for people in terms of who they encounter and their open-mindededness and experience.  I get frustrated in my job to see staff relieved to lose a student but I am so frustrated as it means that we have failed and not met their needs... this thread has certainly taken us all on an interesting journey :)

We are in New Zealand and this is an emerging situation also involving the family court as mother resisted diagnosis even when SD16 was asking for assessment.

Her school is useless and because she mostly lives with her mother behaviour has got worse since diagnosis. Were she with us we'd be well down the track of intervention. Her school failings are heading her rapidly to NEAT status.

Her ADHD sister is 20 and arrived in our town 1 year ago underweight and off the scale anxious and acting out. It's been like working with a feral kitten, even loving gestures were seen as threats in the early stages. Breakthrough happened after a significant health scare where SD20 had to get help to get some serious problems addressed.

I'm a health professional and know how to navigate complex systems. SD20  had to trust me to get her over each barrier to access care. This gave me and her Dad observation time (they had been badly alienated since she was 13). I suggested SPELD for dyslexia first and from the results pushed for ADHD screening - damn challenging in a cash strapped health sector with an "adult" patient.

With medication and very soon therapy the difference has been AMAZING. I'm so proud of her. Too many successes to list. Big ones: re-entry into Education, normalised weight and a warm relationship with her Dad (who also has ADHD, so life is fun in my household).

I am fortunate that I come from an alphabet soup family, so my family knows about how to work with diversity. My Mum, bless her, has stepped up on grandparenting for both girls even though SD16 is very unrewarding.

I am also fortunate a good friend is a retired psychiatrist and she keeps me focused on the potential for change even in the face of great adversity for SD16...so I keep pushing (such as learning how to access funding)

Hi QuirkyFriend

a challenging age for your SD...and a great time to be diagnosed just before her GCSEs! Is she and little sis coping ok and how good is her school at supporting,,,,and how confident are you in doing the same ..

Not ASD myself but DCD. However my 16 y/o SD was diagnosed in May 2017.

High verbal skills has masked her issues and her sister too who got an ADHD diagnosis in March 2017.

I agree Lone Warrior...one of the most positive traits I see in my students over the past couple of years is a resentment towards being categorised - I.e we are all individuals - good bits and bad...they do not comprehend the need to categorise in relation to age, sexual orientation, religion, disability which I think is brilliant...however there are still bigots in the young community..,but there you are...

Your comments about different types if women are very true and I am sure you are equally frustrated by the trains of some men.....are we all on a spectrum.....but who decides the scale and the diagnostic framework and how do you ensure that everyone works together...

we are each individual pieces of a big puzzle and all have our role, and skills to add and enhance the world around us as long as it is not to the detriment of others...

Glad you feel at home...I am still installing updates and processes...so very much welcome your contribution Mr Warrior. With no fluttering of eyelashes - lol - good luck to you and your daughter

Thank you for making me an honourary woman,I really don't make judgement on gender, but I do have old fashioned values toward the females,(picks up shovel to dig big hole)women are to be held in high regard, now that sounds sexist but it isn't,I will try to explain so as not to affend.females have a built in instinct to protect,nurture the young, I'm not saying All women or that men are not but in my head if women were running things we would have less war.

I also believe women have been held back forever in gaining an equal level of work, I know many females who do better jobs in a male dominated industry.

I never treat females any different when at work, I believe most realise this,some try the old flutter the eyes to get things their way but it doesn't work on me lol.

watching my male colleagues is embarrassing as they change so much,for crying out loud haveyou never seen a women?

hope I haven't affended anyone?

My daughter posted something on social media which I read it was a women’s story of finding out she was autistic at an older age, until that point I had never given it a thought before,life changing it was I am 54 and always assumed I had dyslexic traits.never quite fitted but here I am and finally at home with fellow free minded folks.

Good call Spotty and I hope you enjoy Odd Girl Out...have you read the theories that an epiphany happens re: ASD once all of your learnt and masking strategies are spent...then you hit a crisis or existential brick wall.

i teach computer science so over the years about 20% of my students have been on the spectrum but I did not identify myself with this...maybe due to most if my students being male....

ASD is a spectrum cross age, background and gender..but am intrigued by the high functioning nature of those in this community... is this the perceived need to over perform and achieve to gain acceptance.....Spotty and Mr Warrior...your thoughts are welcome here...

Will check out the Sarah Hendrix book as welll.....!!! Thank you for the heads up

Mr Warrior..,and thoughts on the gender differences....or are you gender neutral ....as we all should be....back to the inaccuracies of the diagnostic framework.,,

Hi Lonewarrior, I tried to tag you below but it didn't work!

Wow, you are very brave to be a teacher nas23891, that's a lot of people for a lot of the time!  I completely agree with you and @Lonewarrior about empathy, the concept that Asperger and autistic people have no empathy was ingrained in my subconscious which is why it's taken 49 years for me to realise the bleeding obvious!

I think the female voices appearing to show other appearances of ASD are really important, but not just for women, I'm sure there are men out there with these more subtle traits and masked behaviours too.  Research seems to suggest that there is more gender fluidity/ambiguity in the ASD community than the general population, so it would seem logical (to me anyway).

I'm all for feminism but I don't want to be ghettoised either.  The more adult voices and experiences  the better I say! 

I've just ordered the Odd Girl Out and look forward to reading it, also read Women and Girls With Autistic Spectrum Disorder by Sarah Hendrickx which had some interesting content and was certainly worth reading.

I was imploding in life generally which is what made me start looking for answers, now I sort of have this answer but I don't feel I'll fully own it without a diagnosis.  Then comes the doubt, then the terror of 'what if they say it isn't ASD'...  This is the first bit of communicating I've done on the subject so maybe that's progress, I like writing but have been becoming increasingly mute, here's to all of us finding some positives and our voices.

P.s the real struggle I have seen is ASD children is at break times trying desperately to engage with peers and reach out to make friends and engage with others. Their peers do not have the knowledge or emotional level of development (as yet) to manage this. The ASD child is told that their behaviour is inappropriate (as they are this point getting distressed and frustrated) ... but not told what they got right or how to remedy this going forward...they are not given the rule book...and so, the cycle continues.... -sigh-

Thank you Lone Warrior and I am glad that you replied to the post. I did not want to segment the community by just wanting to hear from women. 

There are plenty of commonalities between male and female ASDs but also some slight differences which only just seem to be coming to light which I will hope use to support my own diagnosis. There are commonalities and differences in all of us, however.

Your comments re: empathy are very poignant and powerful...I am a teacher by profession and try hard to help others and recognise and celebrate and acknowledge difference in all of us but sometimes it is as if you can feel that pain profoundly but are behind soundproof class unable to have reciprocal feelings and expressions of care heard or seen..or articulated in the way that you feel them.

Congratulation, Lone Warrior you have now become an honorary women of this small community!!! :)

Hi nas23891 I am male but had to respond to your comment"One of the cruelties of ASD is that we can be very empathetic but hit paralysis when trying to intervene to help others". This seems to keep cropping up from other ASD people! I think the so called experts need to re evaluate their assumption regarding empathy.empathy has two main headings,cognitive being no empathy and effective meaning an understanding of how someone feels but not able to see why. Don't quote that but I read a bit about ASD folks having no empathy! Absolute nonesense I think, I truly believe we see more than neurotypicals but as you say freeze when attempting to deal with it. Take care and I hope you find many like minded non judgemental people on here.

Thank you for replying Spotty.

I've also been doing a lot of reading of online papers etc and taking online assessments and can certainly recommend Dr Tony Attwood and Odd Girl Out by Laura James.  The blogs have been good too and I am pleased that there are so many successful and intelligent women out there but it is sad to see so many working hard to figure things out on their own.....and in their own woodwork!

One of the cruelties of ASD is that we can very very empathetic but hit paralysis when trying to intervene to help others!

thank you so much for responding.  I realised that the diagnostic test is a long wait so I'm just reading a lot and reaching out to help settle onto this self-diagnosis which has seen everything click into place in terms of past experience and behaviour...I just need to resolve all of this in my head space before I take the next step.

how are you bearing up?

Yes, hello, I've been lurking for a couple of weeks and your post has brought me out of the woodwork!  Well, I say yes but that will depend on your attitude to self-diagnosis, I've been referred for assessment but it seems that could take a year which is a little distressing.

I spent a while reading musingsofanaspie now dormant blog, between the posts and the comments I found an awful lot of self recognition. It's a shame there isn't more activity here, though I have read some really interesting stuff. My head is still fried at the moment because a month ago it never would have occurred to me that I might be autistic but given all that I've read and those online tests, my life is explained.

I also think there are probably hundreds of us out here undiagnosed but suffering without knowing why.