There are very few specialist services, at least publicly-funded ones, for post-diagnostic support of autistic adults.
Meanwhile we hear figures of between 66 and 80% of diagnosed autistic people have mental health problems, and mental health services are rarely adapted or suitable for autistic people (how many MH professionals even pick up on autism and make a referral?).
What might support you or autistic people of any age to fulfil their potential and to avoid developing depression, anxiety and other mental health problems? What does good post-diagnostic support look like?
What would improve your quality of life if money were no object? What would you communicate to everyone about autism and your needs? Are there any skills that you would like someone to help you acquire? What would you be enabled to do? Design your own therapist or mentor if you like.
(Asking for a friend )
For me, it required a complete change of mind-set once I had my diagnosis. No longer was I the problem. Society and its institutions were the problem. Mental health services treated me like a malingerer. They told me to go away.
When I got the diagnosis, I looked at the 'support' available. Much of it was apparently geared towards 'changing' me to fit in better. By this time, I didn't want to fit in. Throughout my life, other people had been indifferent to me at best, hostile to me at worst. I didn't want to learn their language simply to be accepted by them as a refugee. I was okay. Other things needed to change to suit me.
That's why I'm 'out' about my autism with whoever I meet - employers, colleagues, acquaintances, family members. If they reject me because of it, then I don't need them in my life.
I realise this approach wouldn't work for everyone. But it's how I have to be, to survive. It's how I find out who's really on my side.
And if it's no one... then fair enough.
I'll just be me, anyway. As I've always been. But with much more confidence in who I am.
For me, I was absolutely shocked at the distinct lack of support post-diagnosis. And, what was available was wholly unsuitable. As you indicate, it was primarily designed for Allistics! Like Martian Tom, I found the vast majority of 'professional' approaches were actually designed to train me to be Neurotypical (never mind the disheartening value judgements they placed via repeated reference to how 'wrong' I was).
For me, you can forget Counsellors and therapies etc. For me, some sort of mentoring system would've been far more ideal. Ideally, this would be someone who has gone through some sort of formal training, but who happens to have Autism - so they have a very real shared world experience from which to mould their guidance. Even without formal training, I just think an adult Autistic - who is a few years ahead down the path, and is making a success of things - would be infinitely more valuable than most of the so-called professionals I've seen.
Immediately post-diagnosis, I wanted the instruction manual on 'how to be Autistic', which apparently no-one has thought to write (Martian Tom, I throw the gauntlet down!)! But, clear-cut, unambiguous strategies for better coping with life would've been very helpful. The problem with late-diagnosed adults is that you develop very crusty and faulty coping mechanisms, after years of trying to tackle life on your own. These have been utilised for very good and valid reason, but the problem is such self-created strategies usually become obstructive through repeated over-use, even when they've clearly passed their expiry.
The one thing I've not encountered since being diagnosed is another late-diagnosed autistic adult! I'd love to sit one down with a cup of coffee and just share experiences, compare notes, and see what they're doing better than I am.
Gauntlet accepted! I'm a little tied up with another writing project at the moment (a new blog about life on the margins), but it's on the burner...
It'll be less about 'how to be autistic', though, and more 'how I manage as an autistic'.
I have faith in your strategies MT. You detail 'em, and I may translate 'em into clear-cut 'rules' if that's okay?! ;-)
The only rule is...
Hi Cassandro this site has been a true life saver for me, I have had some very dark days but being able to let it all spill out to those who have gone through similar is priceless.
I have received much support and understanding from many here, I also have friends! Yes people on here I class as friends who understand me well and I understand them, we support each other in a way a NT never could,
We have unique issues that only another who is autistic can truly understand,
yes we are all different but we all work as a team in helping each other and sharing as much about ourselves as we feel able to say.
long may it continue.
As for resources for adults? I will not hold my breath, I have managed this far so they see me as doing perfectly well,
The reality is after fifty odd years of tirelessly battling to fit in I no longer have the stamina to mask,
thank you for starting this as it makes good discussion and you never know someone up there may just stumble opupon it.
I can relate to everyone else's answers here. I'm not long diagnosed and am shocked at the complete lack of ANYTHING for AS adults, I think it makes a mockery of the hundreds of UK services funded for children because the unwritten fact is that once these children turn 16 they're going to be dropped on their ass. As a parent myself (although as far as I'm aware my children don't have AS) I'd be frantic about this gaping hole in service provision.
As I'm in my 40's I've passed, whilst un-diagnosed, the stages where most actual service provision would have been helpful but I do strongly believe that adults need some sort of post-diagnosis support.
Information for a start!!! The same basic (very basic) information is regurgitated from every so-called Autism Service I've contacted, If I have to read one more time "Autism is a lifelong blah blah blah" again I'll scream! Why do they all insist upon sending out the 'Ladybird Books' version? Where the hell is the Autism Dictionary / Encyclopaedia / official reading list / course material? I was even sent information on toilet training! In my 40's!!!
(Sorry. Overuse of the exclamation mark is the only form of extreme expression allowed by NAS. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!)
I agree with @Evan that a mentoring service such as he described would have been THE most helpful thing to find.
A counselling service with counsellors who actually know SOMETHING about AS would also be useful. Even better if the counsellors themselves were on the spectrum and actually understood what we were talking about without assuming we wanted to be 'fixed' or 'cured'. I just want to understand myself and my diagnosis properly and at this rate I'll be in my 60's and still trying to make sense of it all.
Hi Endymion your thoughts are an echo of my own,( meant in a very nice way)
I find it utterly amazing that the members on here give so much time and understanding helping others.
A long list of members who have been through many of the early stages of realisation when first diagnosed or even me an undiagnosed member who always try to help where we can.
Why can the powers that be read what we keep saying and notvtake it onboard and make use of it?
we understand our concerns and quite often the advice we share is learnt the hard way. We go through the hard times, we get support from others who have been there.
I can see when a new member comes on saying,,,,,
“ I have good reason to believe I am autistic, and I have done various tests which point strongly to the fact I may well be autistic, what happens next?”
Well to start with you may feel bewildered that you have been struggling all your life and no one seemed to notice. You may feel like you are grieving at a great loss, a loss of all the help you could have had if only more was known about autism, you may feel angry that you were diagnosed with many things but not ASD, Angry that no one ever listened when you told them you thought they were wrong.
There are key stages of awareness, yes they vary but most come here looking for answers, as you say fliers like potty training, and key statements like ,,,
1) a lack of empathy.( complete and utter nonesense,inability to show it maybe,) ( but often felt more to the point of feeling pain oneself)
2) Repetative hand movement or flapping.(stimming) (I count to reduce anxiety,not visible)
3) a special interest in one main subject matter.(currently autism,suprised!!)
4) An inability to socially interact.(unless you have spent fifty years masking and having to fit to exhist)
Are useless and incorrect for adults, this is a site for adults and adults of children with ASD, or carers.
Why if I can see the patterns we each go through is it that so little is written about in a way that is easily reached by others?
maybe one of us could do the work so desperately needed.?
I really do understand things vary but an honest overview of possible realistic feelings and a discription of the high’s and lows would help.
Until then we shall keep doing the best we can for our fellow tribe members.