Non-existent support for (high functioning) Autistic adults?

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Shadweller
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21 Aug 2022, 5:52 am

Thanks to the internet there does seem to be a good amount of self-help in the form of resources like this forum and some really good and helpful Autistic You Tubers channels. I have spent so much time finding and watching these You Tube channels especially, because I find them very helpful.There are also some Autistic meet up groups, online and in person, that the members arrange themselves.

All of these things definitely help, and I'm thankful that they exist now.

However, there seems to be next to no help or support available to "high functioning" (and by that I mean people that can live independent lives to varying extents) Autistic adults in the form of specialist tailored therapies and / or counselling etc. It seems that once a person leaves school or university then that is it as far as help goes. Unless a person is lucky enough to have a very accommodating and understanding work place.

I was offered a few weeks of online information / support groups post diagnosis. I had already found out most of the information provided by myself by that time, and the time for interaction within each group was very limited. Some weeks just a couple of minutes for a group of 10 people, and other weeks just 5-10 minutes. So really not that great at all.

It can be very hard going trying to make it through this world as an Autistic person and having someone to talk to who actually understands would probably help a great deal. Mental health conditions like depression and anxiety frequently occur alongside Autism, so why could therapies like CBT not be tailored for Autism? I have tried CBT for my social anxiety, but because it is tailored for NTs it was of very limited usefulness.

Does anyone think this situation will ever change? Are Autistic adults considered a lost cause that nothing can be done for, and so this is why at this time it seems to be very difficult to find any ongoing specialist and tailored support? Ideally ran by Autistic therapists so that they could actually understand.

Why is this not happening, or so hard to find if it is?

Is it because research and understanding at this time still has not advanced sufficiently for anyone to actually know what can and actually does help autistic adults?



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21 Aug 2022, 6:50 am

I think the difficulties of high-functioning autistic adults are too invisible to be taken very seriously in many situations. For example, at my work, although my boss was made aware of my ASD diagnosis, he still only kept treating me as some freak in a very degrading manner. He was finally punished by HR after I documented how he and others had been treating me and lodged a formal complaint. I did all that by myself. No support apart from an HR officer's after the complaint was lodged. The problem was/is that I look rather like a "normal freak" and people don't take my difficulties seriously in most of my life situations.

However, I do get government funding to help me improve various aspects of my life - learning skills to look after myself, employment support, a support person, counseling etc. An autism support organization of the state is doing all that, funded by the government. So, I'm not totally without support.



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21 Aug 2022, 7:37 am

Shadweller wrote:
Is it because research and understanding at this time still has not advanced sufficiently for anyone to actually know what can and actually does help autistic adults?

I think it's just a question of government priorities. Governments don't like spending money, and I suppose their excuse for disregarding adult Aspies is that we've survived without it so far and therefore we can be safely ignored.

I was left to fend for myself after my diagnosis. There was a short discussion about my options, but that was long gone before I got my brain round the new situation. Apart from handing my DX to my employer to get a few concessions, I hadn't thought about what else might be done to make my life better. There was a long list of possible services attached to the end of my diagnostic report, but it was just a generic copy-and-paste job, and I never found anything on there that looked like it might be helpful to me.

In a better world I'd be offered an ASD case worker. I'd contact them whenever I had an ASD-related problem, and they'd help me to sort it out. We'd also be able to explore my ASD profile in depth, and figure out how to enhance the coping strategies I already have.



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21 Aug 2022, 7:52 am

I'd say that around here, it is negative support. I'm close enough to normal that when I ask for accommodation, the nurses assume I'm just messing with them and turn into bullies.



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21 Aug 2022, 9:30 am

Help with transitioning from teenager to adulthood or adulting for the youngest adults while still insufficient and flawed is there a lot more then 10 or 15 years ago when there was little to nothing. When the diagnostic criteria greatly expanded in the 1990s leading to the “autism epidemic” parent organizations such as Autism Speaks successfully lobbied for “services” for their children. Those children are now Autistic young adults so these parent organizations had to pivot to lobbying to “help” these young adults. Capitalists run the world and they realized two things. Train young autistics and that autistic will make you a profit for you for the next several decades. Either they or somebody they know has autistic offspring.

For older millennials and up it is going to remain status quo, basically continuing to help ourselves as best we can. We are at an age where companies even without Autism are looking to replace us with younger workers believing we are too set in our outdated ways and won’t be working long enough for them to invest in us. Many of our parents are either dead or need of help themselves. Even if they are able to they grew up in an era where rugged individualism mentality prevailed. They think “you got by all these years and all of a sudden you want help? Stop using the label as an excuse and figure it out”


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21 Aug 2022, 9:46 am

^^ It is scary to hear that corporations are involved in Autistic support. They live to make profits, and that means keeping people dependent and needing more help.



DanielW
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21 Aug 2022, 9:52 am

Most people seem to think neurodiversity of any kind disappears when people reach adulthood as if its something we grow out of. (it can actually look like that because those of us who can hide what makes us different by the time we reach adulthood.)

Another problem with providing supports is that one type of support that helps one of us can easily hinder another of us.

The one good thing is that if you have a formal diagnosis of some type of neurodiversity, you can request specific accommodations. Depending on where in the world we are, workplaces, schools, and public services are then supposed to provide them. However, the laws are too vague. In the US for instance, accommodations must be "reasonable". There is no legal definition of "reasonable" however, so it doesn't offer much actual help if you are told that request(s) are unreasonable.



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21 Aug 2022, 10:08 am

Another structural problem is that the world is full of fakers who will try to take advantage of any benefits program. They study how to appear more typical than we can.



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21 Aug 2022, 5:59 pm

There is no supports for us and we have to go it alone.


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Pteranomom
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21 Aug 2022, 9:26 pm

Supports for children exist to some extent because they are mandated by law. For example, the ADA says that all children are entitled to access an education. This means they must have whatever supports they need to succeed in school. (Whether they get those supports or not is a different matter. It is up to the parents to advocate on behalf of their children.)

There is no law that says you are entitled to a job or a social life or housing (or maybe there is and I just haven't heard of it). There are programs to help/support adults, but they are obviously much more limited.

This isn't all bad, though. It means there is an opportunity to influence the creation of the supports you want, rather than just accept what other people have created.



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21 Aug 2022, 9:40 pm

Shadweller wrote:
However, there seems to be next to no help or support available to "high functioning" (and by that I mean people that can live independent lives to varying extents) Autistic adults in the form of specialist tailored therapies and / or counselling etc.

What sorts of things would you like?

"I was offered a few weeks of online information / support groups post diagnosis."
I wouldn't expect much out of an online group unless it was an organic community like this one. Annoying as it is, online interaction just isn't a full substitute for real life interaction.

Quote:
so why could therapies like CBT not be tailored for Autism? I have tried CBT for my social anxiety, but because it is tailored for NTs it was of very limited usefulness.


What do you think made the therapy not work for you?
I have done CBT (or at least, something that was called CBT) based on the book "CBT for OCD for Dummies" with my son to help him overcome his phobia of dogs, and it worked! I was really proud of him. But some people say that's more 'exposure therapy' than CBT.

I'm sure there *are* therapists out there who work with adult autistics, but finding a good therapist can be difficult.

Quote:
Is it because research and understanding at this time still has not advanced sufficiently for anyone to actually know what can and actually does help autistic adults?
IMO, our understanding of autism is advancing rapidly and we are learning new things all the time. Much of that understanding is the result of autistic people themselves explaining things to NTs. So, yes. We as a society don't have all of the answers... But things are getting better.



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21 Aug 2022, 9:44 pm

Everybody else on the spectrum gets what they need and we fall through the cracks.


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Pteranomom
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22 Aug 2022, 1:13 am

CockneyRebel wrote:
Everybody else on the spectrum gets what they need and we fall through the cracks.

Don't know what you mean. There are non-verbal people who've never been taught to read or write and have spent almost their whole lives in institutions.



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22 Aug 2022, 3:22 am

Pteranomom wrote:
CockneyRebel wrote:
Everybody else on the spectrum gets what they need and we fall through the cracks.

Don't know what you mean. There are non-verbal people who've never been taught to read or write and have spent almost their whole lives in institutions.


I meant help looking for work. Also I agree about the people who've spent their lives in institutions. They're the ones who have really fallen through the cracks. It's a shame that nobody believes them or gives them a chance.


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Shadweller
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23 Aug 2022, 1:10 am

Pteranomom wrote:
What sorts of things would you like?
I wouldn't expect much out of an online group unless it was an organic community like this one. Annoying as it is, online interaction just isn't a full substitute for real life interaction.


In an ideal world there would be trained Autistic counsellors and therapists offering one to one person centered counselling and / or CBT, both tailored for Autistic adults. This would be great. Also in person group sessions. Maybe the Autistic facilitator could select a topic and run the groups and help everyone have a say if some people talk too much (they could be held in check a little) and others too little (they could be encouraged to speak more) . This has been a problem in some of the Autistic ran online groups I have attended, where some individuals end up dominating and talking too much.

I agree that online Autism groups aren't as good as in person groups, but in person can have their problems too, especially if they are informal and held in cafes etc, I have found them far too busy and chaotic with all the interruptions and people coming and going. Online groups are better than nothing, and a helpful and convenient stepping stone too.

All the things I have listed would be ideal but a lot of it seems so far away and unobtainable that I may as well be dreaming.

Quote:
What do you think made the therapy not work for you?
I have done CBT (or at least, something that was called CBT) based on the book "CBT for OCD for Dummies" with my son to help him overcome his phobia of dogs, and it worked! I was really proud of him. But some people say that's more 'exposure therapy' than CBT.

I'm sure there *are* therapists out there who work with adult autistics, but finding a good therapist can be difficult.


I found that my social anxiety CBT therapist simply but completely failed to understand many things I was saying, when many of those things related to my as then undiagnosed Autism. THe therapy is set up to work for NTs and needs tweaking, in significant ways, in order to work for Autistics. For example with NTs their anxiety will peak and then subside. Mine does not, it remains constant. I don't know if that's just me, or all Autistics with social anxiety. But apparently this is not the same for NTs and the therapy is set up to work on things like this, which did not work for me.

One good thing that did come of it was that she did force me to question many things as to the reasons why behind them, and this lead to me being open and ready to realise and accept that I was / am possibly Autistic. It feels like it was serendipity because something came on the TV about Autism at exactly the right time for me....Something literally clicked for me and I realised for the first time. And then my journey began, You Tube videos, online Autism tests, forums etc. I was 95% sure of my self diagnosis before i was formally diagnosed.

Quote:
IMO, our understanding of autism is advancing rapidly and we are learning new things all the time. Much of that understanding is the result of autistic people themselves explaining things to NTs. So, yes. We as a society don't have all of the answers... But things are getting better.


I do hope you are right. Thank you for your reply.



Last edited by Shadweller on 23 Aug 2022, 2:01 am, edited 2 times in total.

Shadweller
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23 Aug 2022, 1:25 am

Thank you to everyone who has replied.