If you've been diagnosed autistic what post-dx support did you get and what would be the ideal support?

[Polter]

Just thinking. My diagnosis was private so any post-dx support I would have to pay for, and I haven't told my GP yet so I don't officially know what's available though I know suspect there's actually sod all.

Diagnosis has been incredibly powerful for me, way more than I ever expected. I have found ways to support myself, and places like here and other social media are brilliant for peer support. But I do wonder if some sort of focused support would be helpful. I do sometimes feel like I'm flailing around a bit untethered.

I really didn't expect to be so unsettled by being told something I thought I was pretty certain about.

Hello
I had a choice of one post diagnosis session with the psychologist or two group sessions.
I had the 1:1 session which wasn't really that helpful. It was a good chance to talk through some things, but I didn't learn anything.

The most helpful thing was going on a cygnet course for ds2. I didn't learn anything about him, but had some huge lightbulb moments for myself, and the same at a cygnet puberty course.

Something like cygnet would be amazing to offer to autistic people to attend, instead of just parents of autistic children.

Hi Polter!

I haven't been on here for a while!
Post-diagnosis for me was also difficult.

I am in touch with the person who diagnosed me by e-mail for advice when I need it ( I pay for it about once a term)
I also found these books useful thehowofhappiness.com and www.jkp.com/asperger-s-syndrome-and-mindfulness.html.

and reading, writing to process my thoughts but I think you are already doing this.

I guess it is a bit like it was with our children, even if we knew, getting a diagnosis was still a chock. Just remember you don't need to do anything different, you are still you and you will always be. But I think like me you needed to know for sure, knowing for sure has made a positive difference to me.

Thanks Molly (good to 'see' you) and Cloud

Writing is probably what helps me most and also just interacting with other autistic people.

There's definitely something different post-dx that I didn't expect. I hear people say 'diagnosis won't change anything' but it does!

Thanks Polter.
Yes it did change everything for me but not for the people around me, they still see me the same (close family and friends). What has improved is a greater understanding from DH and my Sister, we communicate much better these days and that has made a huge difference.
It gave me a great need to help others who are unaware that they might be on the spectrum and the children at school who are undiagnosed but said as "borderline" or "mildly autistic"- but I haven't found a way of doing this. I've tried hard but haven't been successful. I seem to be going back to my pre-diagnosis activity at the moment.

I don't have diagnosis yet but my GP warned me the support is non existent. She said she had another patient go through and they literally gave a diagnosis then said "ok off you go" we've discussed the pros and cons of me being assessed and she agrees to needs doing but there's nothing official she can refer me into even when I get one.(which she's really not happy about)

There is a local support group but it's a charity and nothing to do with the healthcare system. It also focuses mainly on kids, although they do have an odd session for adults. The stupid thing to me is that the adults support is a big group meeting and the thought of going terrifies me.

It just seems bizarre that you get told a thing that is quite big, massive in terms of explaining your life, and then nobody knows what to do with you!

Hmm, I wasn't offered any support! I'm on anti-anxiety meds. I was referred for counselling. The counsellor knew I had ASD and tailored the sessions around my needs which was good (I didn't feel like needed to make eye contact). My boss in my new job knows and has made some adjustments for me. For my diagnosis though, it was very much initial assessment, follow up with feedback. Assessment write up through the post. Back to GP.

I find this amazing that there is so little post diagnosis support. There's so much more awareness now it's not what you'd expect and hope for. Presumably it's down to cuts in funding and competing charities who are also competing for grants. Every time I google about asd as a parent all the answers seem to be designed for parents of children, as if asd stops at 18 or parents cease to care and support their children. Also, my biggest bug bear is the lack of education for neurotypicals who seem to be ignorant and unimaginative when it comes to asd. It should be compulsory to include in pshe lessons, much in the same way as bullying etc.

My fantastic GP has been one of the most helpful people since my diagnosis.
After I spoke to her and passed on my report, she went further and read up all she could about women and autism (I suspect she is on the spectrum herself, she was at the same school as I was, but a few years ahead). When I went to her with a form to apply for a DSA assessment, she knew so much about ASD and asked relevant questions, and recognised things in me that I hadn't really spotted myself, which I was very impressed with.

Getting the diagnosis itself has been the biggest help for me, because I can understand who I am and why I've ended up the person I am.
Good support for me would come in the shape of family (all of them) dropping their assumptions and understanding that I'm not the lazy, unmotivated, attention seeking arse that I suspect they think I am, and actually trying to understand who I am, who my DC are, without the mainstream, crappy, unquestioning opinions that too many people hold about neurodivergence.
Support would be some sort of help with HEing the boys so I have time to recover/wind down, instead of constantly firefighting them and myself and ending up in a near-meltdown state constantly where I fear I may crack up.
Support would mean others involved would have a better understanding of autism, so when I do admit I'm autistic, by way of explaining why I have come across in a way that has set their alarm bells ringing a crap parent alert, they should have some knowledge of it, and understand that laughing and rolling their eyes is not the way to go (CAMHS lady, looking at you here!).
Support would be dh understanding that a week with the boys is massively overloading and stressful, and when I go quiet and zone out at the weekend, it's not because I don't love him, it's because I want to survive this all and be here for everyone as best as I can.
There's some comfort in online socialising with fellow autistics, but even then I feel the pressure to come across right, to be able to say the right thing, and I'm constantly disappointed that I don't really feel that I fit in there either, and still feel quite isolated. I find 1:1 communication much easier, but it's difficult to get to that point for some reason, as I seem to give off vibes (either annoying ones or fuck off ones) that means I very rarely gel with others enough to become friends.

That probably wasn't what you were asking, and I've ended up off on a tangent!

I think there is still a strong belief that autism is a childhood thing. But the more adults who get diagnosed and the more we are open about being autistic the better for everyone.

I've sort of decided to be up front and honest about my autism now. Not being me hasn't worked so far, and it annoys me that there's such a stigma, but that's not going to go away unless people are more open.
When autistic people are over represented when it comes to the arts, IT, science, things like that, I really can't work out why there's such a stigma, and so many misunderstandings about it.