Autistic Women?

I don't think people would part with that sort of money unless they truly felt different to others and needed answers about their life. No one wants to be autistic. "Normal" people don't go looking for answers of why they feel fundamentally different because they don't feel it.

Glad you find these discussions helpful, I do too, though I tend to go in an out of reading them because I'm so exhausted from work etc to keep up with reading all the posts. I think it's still very hard for women to get a diagnosis as, in Australia at least, psych's are still using the ASD criteria for kids (DSM-5 from the USA). My diagnosis from a few weeks ago included the phrase 'ASD can't be ruled out' in the diagnosis. So is that a positive diagnosis? I'm taking it as a positive diagnosis, not because of this, but because my symptoms follow all ASD traits except for the fact that I'm not a little boy running around hysterically, making no eye contact (which is what most diagnosticians are looking for!). My online Autism Quotient Test score is 45/50 consistently, another reason I'm taking it as a YES, despite the lukewarm diagnosis (which cost me $1000, by the way). So I absolutely feel that the ONLY way women can get a true diagnosis is self-diagnosis, that is, until they update the diagnostic criteria for adults and then, much later I would imagine (as per the global patriarchy), for adult women. As women, we know ourselves so much more than anyone else, we know we fit the main ASD criteria, and we know that accepting the self-diagnosis of autism will liberate us from the tyranny of 'what the hell's wrong with me?' thinking. I'm also in menopause, like you, which also definitely contributes to making the negative symptoms worse. I wish you all the best with your journey :) 

Hi Kate Kestrel Did you decide to do the HRT? How is it going?

Finding this discussion group has been SO helpful. I am in the early stages of recognising my autistic self and like many others I expect have/had doubts about the validity of self diagnosis.

I am lucky in that I have a very good counsellor. I had no awareness that my anxiety and social anxiety could be due to being on the spectrum but she has helped me realise that it is highly likely.

I am very much someone who likes to know rather than just suspect, however the thought of being assessed by neurotypical clinicians scares me. My traits are on the whole mild, and not noticeable however I realise now I have great difficulties with emotional expression and social interaction and these have blighted my life. However, I am luckier than many; I have a career and a lovely husband.

I, too, suspect the menopause has made it harder to deal with life. My anxiety has been through the roof at times and it's so much more difficult to mask when you're already above your threshold of stress! I hate taking any kind of meds so really didn't pursue the HRT option. 

So after doing (and redoing) all the online autism tests, reading everything I can on the topic (particularly relating to women) and recalibrating my life through the autistic lens I am as close as I can be to saying, yes I am autistic. I feel very positive about it and so happy to have the chance to connect with people that understand.

I'm the same currently, self-diagonosd. I'm finding it hard to talk with my loved ones about it, even though they are really knowledgeable about ASD in general but not in my situation/because I present in a different way.

Congratulations on your diagnosis! Hopefully it has helped answer a lot of questions for you. I self diagnosed myself at first and then got an official diagnosis because I hoped it would lead to some support, which it didn't! Ah technically I didn't need an official one but like it or not I've got it anyway. 

Welcome aboard the ASD train. Official or diagnosed, we're all in this together.

Yes, plus also most of us have waited a good deal longer to get our diagnoses.  A broken leg might be horrendous, but is usually sorted by a trip to A & E then a cast for 6 weeks.  Whereas so far we've spent most of our lives without being identified, waited well over a year for assessments, then still got nothing.  
My son, at the time unidentified, did actually break his leg whilst severely distressed and running in a state of heightend anxiety and panic to try to evade various issues.  So I'd go so far as to say that in one case at least, earlier identification would have prevented the broken leg in the first place.  The broken leg is actually trivial, though, compared to the intensity of the distress, over a protracted period, that led to an almost complete mental breakdown.  And then there's the suicidality.  In my view, being unidentified and/or unsupported can be a killer so the help can be critical as well as long overdue.    
 

This is a recurring theme that I hear though - about the tumbleweed vibe we get once we’ve finally got a diagnosis. There’s something wrong with this surely?! What’s the point in diagnosing people and then not helping them? It’s like a doctor diagnosing a broken leg and then not doing anything to help the person be able to walk better. 

Yeah, like many I imagined that, post diagnosis, I'd be signposted and be able to finally access some individual and family support.  What a swizz! 

Still, I'm glad of the benefits of knowing and gaining more understanding.  Plus the road map is probably highly individual and none of the mental health services I've ever accessed have been sufficiently tailored.  So I have more idea of what not to do.  I just wish we'd found out sooner as it would have saved a lot of setbacks and heartache.  

Unfortunately not. It appears we have to discover and make the road map as we go along. 

Yes, I kind of wanted a road map.  There isn't one.  :(

Pretty much went through the exact same experiences as you. I did a bit of a Sherlock Holmes to get to the point where l suspected Autism through my family tree.

You are correct as there doesn’t seem to be a lot of solid help out there (and l found my GPS attitude to this appalling)!

It worked immediately. It was amazing. I might have some weight gain side effects, but I don't think so. I think it's just that taking the HRT has coincided with a huge period of overeating right before I was finally diagnosed. I tend to binge eat when I'm coming towards a shut down period, and while in the shut down as well. That's kinda been going on since last November, right around the time I started HRT. Good luck Kate

Hi Stella - thank you - I didn’t realise you were in Australia. I haven’t heard of Tibolone Lupin - I’m not sure if it’s available in the U.K., - I’ll look it up. I’m glad HRT has helped you - how long did it take before you noticed an improvement? And did you get any negative side effects at all? 

Hi Kate, sure. I'm on Tibolone Lupin 2.5 mg. I'm in Australia, so it's subsidised a bit by the government, but I still pay around AU$35 per month. I think it's a good idea for you to try it. As my doctor said, you can stop it straight away if you don't like it (there are no withdrawal symptoms), but I can honestly say (as someone with multiple chemical and food sensitivities) that all it's done is good. I went from multiple daily hot flushes and horrible night sweats to none at all. Seriously. Good luck

I basically needed to know what was happening within my family as much as within myself.  Longstanding, multi-generational issues around breakdowns, addictions, suicidality, dropping out combined with academic success and a kind of quirky intelligence that repeatedly put us out of kilter with the rest of the world.  We didn't understand our own identity and we couldn't hold our own in the world without masking then breaking down.  

When it happened to my son (at the same age as it happened to my uncle) I simply couldn't believe it because I felt I'd done everything right as a parent and this shouldn't be happening - basically the parental routine of "giving them everything I never had".  It wasn't enough because I didn't get to the heart of it.  I didn't have the information and my idea of autism was, like so many, based on outdated perceptions, stereotypes and dodgy or incomplete research (usually focussing on young boys with clearly defined problems which we just didn't have).  Then, when my son was discharged from mental health services because, as they said, he had Asperger's not mental illness and he (quite understandably) refused to have anything more to do with services, I thought some more about autism, gathered up some books and it all seemed to stack up.  I'd sort of muddled through in life, admittedly with severe anxiety issues, but it was now all coming into sharp relief.  And, joining the dots between my dad and my son, I thought, "Wait a minute - I'm the missing link!  Assess me!  It's the only way we can know!"

So i felt forced into that position, and it pushed me into the situation of relying on "experts" yet again.  Once diagnosed, at first I felt relieved and validated.  Now however, I feel angry and manipulated by the system and, no matter how severe our situation, I'm beginning to think that any contact with them is a bad move.  I could, of course, be monumentally wrong in thinking that, but it's based on our experiences to date and I'm not convinced they've changed.    

Knowing is so important.  But the manner of reaching that knowing matters too.  It now feels like a question of identity rather than diagnosis.  Knowing, being able to feel positive about that knowing and making changes in line with that could have made a world of diference.

Definitely agree

I'm getting more support and knowledge for Autism here than I ever have with any so called professionals

I don't think professionals really understand Autism

At the time proper diagnosis seemed a good idea but looking back I didn't really need it, it gave me nothing but a lot of stress and anxiety

Yes, for me it was a protracted process with long waits in between each appointment.  It also felt like handing my very self over to non autistic "experts" and I too, looking back, wish I'd self diagnosed.

I think there's more support and knowledge within (largely) autistic communities like this one than anywhere else - the others are outsiders and not in our club.  :)

Hello Stellaluna - I’ve decided to try HRT. Can I ask you about it please? I asked my GP about Body Identical HRT (which I’ve heard is excellent) but she says the NHS don’t provide it. Do you get your HRT from the NHS? And can I ask you what it is you take? I know so little about this and would really appreciate any advice you can give on what has worked for you. 

I got my diagnosis through the health system

Very distressing for me, wish I had just self diagnosed now

I hope you'll find all the support you need here

Welcome to the club! ^-^