Autistic Women?

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! ^-^

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.  :)

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

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, 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)!

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.