How to get support as an adult autist?

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Im bumping this as its a helpful topic. 

I would like to build a peer support group in my area, for late diagnosed and suspected aitistic adults. I wonder how people are feeling.  Isolated and sad. I want to reach out to them. People with similar experiences, but nonone to share it with who understands x

Yes, I self-medicated with alcohol for 20 years.

My understanding is that we need to adapt our lives to be more manageable. We are on our own. It is up to us. Its scary but that is the impression that i am getting. 

What makes this difficult is for the late diagnosed, many of us have suffered as a result of the fact that we didnt know that we were autistic and tried to be "like everyoneelse". This then leads to mental health problems. As we get older life gets harder. 

To know is so important. My brother was told "you dont need fixing". So acceptance must play a big part. 

I think it is up to us to find the resources to help us and not neccesarily medical help. 

We do need to be heard. I hope we can raise awareness of the effects of undiagnosed autism, and the lack of support for us to manage.

Support groups may be a good start, led by us. 

What can doctors do? Empathy and understanding helps. People who "get it".

Whatever recourses are available we will still be autistic. 

Maybe we could all contact the Ombudsman, unindate them with our concerns. Maybe someone would be brave enough to go to the press? 

What concerns me is how many undiagnosed  unsupported autistic people turn to crime, substance misuse and take their own lives? 

Things need to change x

I don’t entirely agree. My local autism hub is funded by the local council and the NHS. Their emphasis is still perhaps diagnosis instead of post-diagnosis support but they do organise e.g. a monthly drop-in session, social events etc. Having said that I probably get more practical support from a local community cafe where I volunteer. I suspect it’s a postcode lottery when it comes to support for autistic adults.

It really boils down to a point-blank refusal to understand the very nature of autism in adults with the condition and a refusal to put funding in place for adult support, because the focus and priority is on children’s autism - it’s been said to me by many community voluntary groups that when a parent brings a child to them with possible autism or related modern childhood conditions like ADHD, it turns out that it’s the parents who are displaying signs of autism but have never been diagnosed 

i am bipolar as well as autistic and things are arguably even worse when it comes to getting help for my bipolar than my autism although I do now get 1 appointment a year with a mental health nurse - yippee!

It's so frustrating isn't it.

I patiently try to explain the sensory overwhelm, the inability to focus on a single conversation in a noisy environment, the lack of any enjoyment, the days needed to recover afterwards.

The kind of anxiety we tend to experience in social situations usual has a very rational basis behind it. CBT will not help with that at all. Our thinking is not faulty, it is different.

They just don't get it at all. As soon as they start suggesting I attend a local 'knit 'n' natter' group I know I'm wasting my time 

"I keep being told to go out and socialise"

I have tried CBT twice and this is literally the message I was given both times.  They couldn't comprehend why my anxiety was not decreasing with repeated exposure. I have given up on any form of practical therapy and my fiance & I are just trying to muddle through by ourselves.  

(I was late-diagnosed at 35, so I missed out on receiving support as a child, which seems to be the only way to get any type of ongoing support with being autistic). 

I'm sure we will find something!

Yessssssssssss, it’s so frustrating. I need some kind of support but it’s impossible to find it. I feel so alone. 

GPs sadly have zero understranding. Flap about not knowing what to do, and all they can think of is MH.

Mine apologises for not being able to "cure my autism". (Crrawls off to corner to scream).

No, you're not sick, just autistic. And no, meds will do nothing because autism is not a disease. 

I'd suggest you look instead for the practical and social supports - if there are any in your area- through mind CASS, a locally commission well being service, or autism charity, for autism or a social prescriber for local groups.

You have just summed up my situation except I am with mental health at the moment (and I think it is a waste of all our times).

I keep being told to go out and socialise (I don't want to because at the moment 1 hour of being with people or shopping means several days of shutdown)

If only I could get ASC focused help.

It is a huge problem and getting bigger the more people are diagnosed.

It is often said that the best place for support is right here. However that shouldn't be the case and so often autistic adults desperately need support but there simply isn't any at all.

It is somewhat a postcode lottery. In some areas the newly diagnosed person might be offered a limited number of post diagnosis support sessions. In other areas they'll just be given their report containing a few website links and sent away to get on with life.

In my area autistic adults without a learning disability seem to be treated like hot potatoes, that no service wants to take responsibility for. GPs will refer to mental health services. Mental health services will repeatedly decline any referrals and insist that the autistic person is the responsibility of social services. Of course social services will insist that the autistic person isn't entitled to any support unless they also have significant learning disabilities.

Autism is a social and communication condition, yet we are expected to  be able to fully advocate for our own needs at all times. Understandably that tends to not go well and all too often our requests for the reasonable adjustments we need are wrongly denied. That assumes that the autistic person is even aware that they are entitled to request them and what their rights are. Many don't.

Without the adjustments and support we need our mental health suffers. Then we end up on the merry go round back at the (closed) door of mental health services. Inability to access their services could perhaps be considered a lucky escape, as they simply do not have the training and knowledge to know how to deal with autistic people.

Theres a few unusual aspects to my autism journey but I’ll not hijack your thread. I would say again though that in my experience psychotropic drugs actually did me great harm. Getting off them was primarily my choice but the ASC dx cemented that as correct and has enabled me to get the bipolar dx overturned and my records clearly marked to say No  Pyschotropic meds. Good luck in your journey 

That is unusual! But I'm glad you are getting the help and support you deserve. Always nice to hear a positive support story.

I've been looking for helpful support from the NHS but so far I haven't found. They just keep medicating me and admitting me to hospital.

The various mental health clinicians over many years did me great harm and I consider their medication obsession to actually constitute abuse. However escaped their clutches with the ASC diagnosis. Im getting incredible help and suppprt from my nhs autism team and the official diagnosis has revolutionised my relationship with pretty much every where else in the nhs. Right now I’m in the walk in centre with a finger wound, I explained my autism and was wearing the sunflower lanyard, and they are being outstandingly kind and helpful, have found me a quiet, calm, cool place to wait. And while here Ive had a call from my autism support worker who knows about the wound. All wonderful but I know unusual