Published on 12, July, 2020
Has anyone else on here started or thought about starting their own social group for autistic adults?
I ask this because after getting diagnosed myself, I realised that for the majority of us who are diagnosed with autism as adults, there is very little support actually available. I had an idea of how good it would be to have a network of groups for autistic adults that are set up and run by those autistic adults that are able to do so. Because for those of us that don't qualify for any support, the only way we will get support is to create our own, and there are so many more people in the same position that we can help too. This is the hands on approach to increasing the number of services available to autistic adults, to make our own to help not only ourselves but also other autistic adults who otherwise would have very little support. So I started my own group up a few months ago, for autistic women that live in my local area, which is going really well. Yesterday, a friend of mine told me that she is also in the process of starting up a group for Neurodiverse women in her local area, which I'm really excited about! So we have a couple of up and coming groups. What about the guys, have any of you envisioned this type of group? Do people think that this is a good thing for those of us that are able, to be doing?
I live abroad. I'm interested in a support group for expats and some English speaking locals. It would be difficult to create an adult support group here, unless I can find someone locally in one of the 'caring' professions, to act as a legal front. And as one local doctor said to me, many adults on the spectrum here are probably doctors; and they do not want to either talk about it or be 'out'. And they may not even self-identify, let alone have a diagnosis.
Now I have quite a few acquaintances in the medical profession. One such acquaintance suggested his own preference for meditation. (Well, I have adapted that idea, with some success, to self-hypnosis.) He also referred me to a hospital psychiatrist, who was only prepared to diagnose me as GAD with reactive depression. He also said there was no way I could be on the spectrum, because I had demonstrated too much empathy talking to his admin staff (this was before I traveled to the UK for an assessment). I had already indicated that I did not favor anti-depressives, but that's what I got anyway. I tried them for a few weeks and dropped them gradually to zero. I found my own ways to deal with the depression, thru reading. One person I will probably never bother to contact again. I'm pretty sure he was just making an excuse to keep the whole subject under wraps.
A childhood ASD specialist (900 kms away) talked about cooperating with me on awareness projects, but obviously has too may things to do with her own family and education projects. She also referred me to someone who might be prepared to do an adult assessment, but that came to nothing
A GP was quite helpful in referring me to a neurologist, but again he did very little other that refer me to a local psychologist; whose receptionist basically told me he wasn't interested in talking. A big pity, since his specialty is sleep issues, and I've had a few of those in this noisy place.
A large and reputed mental health establishment told me they were not even yet up to speed on childhood assessments.
Expat therapists have told me it is on their menu, but I formed the impression that they just wanted to conduct multiple sessions at a cost I could not afford. I was later told by someone in the UK that therapies should really begin to work from Day 1, and that less than 5 sessions was quite often sufficient. in any case, I doubt that they could really help me half as much as I can help myself; particularly as therapy can only ever really address comorbidities.
The above search was always mainly with a notion to find other people locally with the same difficulties. I already had a notion that the medical profession wasn't going to help me very much at all. And the one expat I know here who knows my label (but apparently disagrees) is also keen to avoid the subject; despite having previously worked in the NHS.
So I kind of figure that until I can find someone locally who is just prepared to talk about it, any hope of having a support role locally is highly impractical. But there are obviously quite a few young people on the spectrum here, and they're daily getting older and even further from support.
No support, or even recognition, at home here either! Sure, I know where I could find some excellent support in the UK, but I'm rarely there. (Some online support is also possible.) And even there, there is frequently similar resistance. The NAS say they don't want volunteers or reps abroad, for instance. The search goes on! :-) Actually, just some F2F friendship would be enough. Big plans aren't at all necessary.
It's sad that it seems that autism is not widely accepted or talked about where you live. This must make it extremely difficult to meet other autistic adults or access any services? It shows that there is still a very great need to raise the profile of autism and increase awareness about it and, dare I say, increase even tolerance and acceptance of it, at a world wide level.
It appears that even medical professionals in the country where you live do not even wish to diagnose autism. It's good though that you've been able to find and adapt your own coping mechanisms. Where there's a will there's a way!
I'm glad that you've joined this forum and I hope that chatting with fellow autistic adults on here can offer you the support and friendship that is lacking in your own country.