I wish i had this kind of help too. I have a husband, and he supports a lot. I can relate to what you say. I hate going to doctor/hospital. I never go, i have to be feeling like REALLY awfull to go. But whenever i get the energy to help myself by "ok i need help, i need to seek for help" , when I get to the doctor's office they never believe me, I am polite, whilst in painn or fever etc, and my expression don't show.. so i have to convince them I need help, is so tiresome

When I first got a counselor, he handed me a piece of note paper with a Facebook group, a phone number for someone in charge of a local support group and an email address for another local support group. I didn’t want to join the Facebook group because (like you said) it was mostly parents and I didn’t want to advertise my autism to everyone on Facebook that doesn’t know. (I’m in my 40s) No one ever answered the email and after weeks, I finally got the courage to call the number. No one has answered and it has been about 4 months. So, things are about the same in the US. ☹️

Catch 22 :( If you are can advocate for yourself sufficiently to jump through the hoops they create in order to get help, then you don't need the help. Aargh. I found the same with depression - you can get all this help if you chase all these people ... yes, when I wasn't depressed I could probably have done that. Hugs.

That's super frustrating. I wonder if, for that specific place that you reached out to, having your therapist call as an advocate on your behalf for how much you need the help would push them to believe you.

As with everything in the UK, for those that really need support, the hoops you have to jump through to get it, make it basically impossible to access without a full time advocate. And if you don't have one and have to dig deep and heavily mask to advocate for yourself then they decide your mask doesn't need the help.

I relate to this so so so so much. I feel like I can say what I need help in and also have to advocate for myself, but the reason I can do this is because I was “lucky” in that I had a physical injury/long term chronic condition that I did a ton of PT and OT for and I was able to ask my therapists about some stuff and they used what they had to help me with things recognizing I had the added challenge of adhd/autism and they were willing to listen to that as well as help educate me with what I might need. So, I’ve been able to piece together my needs for additional support just through being lucky enough to get a little extra help and also doing a lot of research in listening to autistic people on KZfaq, etc share their own personal experiences so I could be like “hey wait, I have that challenge too, perhaps this is what it means to need additional support” because I was diagnosed as an adult and there is no services really for adults or I’m met with people automatically assuming because a therapist gave me the number to call and told me what to ask for that on the other side they assume “you have high functioning autism and do not qualify for this”.

When you mention the part about there really needing to be some sort of RESPECTFUL discriptor to differentiate the different genres (lol) of autistic people is very real and something that I totally understand has a history of being very unkind to certain autistic people and I am very sympathetic to that experience because thats really shitty. But I think that the absence of any sort of way to simply distinguish and identify services and resources to actually help cater to different kinds of autistic needs, also isnt really working and instead of making it easier to access services due to trying to level the playing field, it actually makes it harder for certain autistic people. People should not be put into groups based on their “function label” (aka value to society) but people also shouldnt be left without services or be seen as “not autistic enough”, just because the damn neurotypicals can only accept the profile of one single representation of autism!! I wish we could discuss this more neutrally and openly as a community when we are being hurt by the system that We Did Not Create, and also recognize that autistic people are not the threat to other autistic people! Ahh. Many thoughts. Head full,,

In Australia my level of autism isn't even considered a disability. I have a lot of trouble asking for help so I suffer in silence. I'm too autistic to be able to advocate for myself but not autistic enough to be able to get support. When I do mention a problem it's just written off as 'your autism'. My doctor says only those who make a fuss and are loud are those who get the help. I can't do that. My doctor agrees so she just gives me meds to be able to end it all when I get to the point when I just can't do it anymore. It's hard knowing you aren't enough to be worth the care (especially healthcare) as everyone else is able to get.

At this point I just accepted that I was going to have to find my own solutions to things, and I hate it because that's the exact excuse our government uses to cut more and more ressources. We can survive without it so it must not be important... With this mentality they make services less and less accessible until people don't even bother to apply, and then they cut them. At least that's what happens in Quebec.

This subject of advocacy or having others who can support you either in terms of giving advice or speaking up for you is really important. As you point out it's really hard having to do all these enquiries and negotiations yourself and then you can get caught in the trap where they assume you must therefore be independent enough not to need support. As regards autism - but also other disabilities or problems in life - having support in putting your case is really important. Some autists have their parents or siblings or other family members who help them out; some have friends, colleagues or a charity or group to push their case. It makes the biggest difference if any of these people are professionals who know the system and have a lot of clout. It's the nature of autism and the isolation it brings that some will either have no-one to help them or only people who are good at moral support but don't know the system and therefore aren't so good at getting the right results. It's like going into a court case and having to represent yourself or having a lawyer to advocate for you but even among lawyers there are big differences in experience and quality. It's wrong that some autists don't get the support they need because they don't have others to advise and campaign for them.

Where I live, you’re not entitled to any autistic-specific free assistance from the government, unless you can prove you were diagnosed by age 22 (which is nonsense, of course, considering how common late diagnosis is). Additionally, when someone is fortunate enough to get a diagnosis at an earlier age, they’re funneled right into ABA (which, from what I understand, you Brits have largely had the good sense not to buy into). I enjoy participating in in-person and virtual autistic-led meetup and support groups. Before I swore off social media, I would sometimes participate in groups that included parents asking adult autistics for advice and feedback, but I’ve never been in a support group that was parent-led; I feel that would be infantilizing and I wouldn’t get anything out of it.

I like that term you used -- Genres of Autism.

I want to comment something but I don't know what to say so hello. I hope you have a good day (or at least not awful)

You needed help. You sought it out. It helped. You don’t need help 🙄🙄🙄🙄