Dismayed By Lack of Adult Support

Post Reply New Topic

I can't help thinking that what Aspies are most likely to require is, not social gatherings, but advocacy, and perhaps some practical assistance.

I say this having in the past felt somewhat overwhelmed at everything life was throwing at me, and sought help, only to find that it took as much energy to engage with services as it would have taken to just carry on as I was.

I found a charity, hoping that maybe they could help with filling out some forms, and making some phone calls. There was a waiting list for an initial consultation with them, so when I finally got to see them I was relieved. But they were NTs with apparently very little understanding of the problems of an adult Aspie. They promised to look into some of the inquiries I had made, but I never heard back from them about the help I'd hoped for. Instead, I have received a constant stream of invites to organised social events such as group picnics, or cinema viewings, and numerous other activities that just didn't seem appropriate to offer Aspies. This was bizarre and disappointing.

Eventually I found a local self advocacy group which I went to once. It wasn't for me as I recognized that I don't want to get into politics, just to be able to live my life without fear of being pushed into situations that are excruciating.

I've been hibernating, and slowly ticking things off my long list of things to do, just trying to "keep the wolf from the door".

i liken having this diagnosis as an adult to being a chicken in a hen house filled with adorable baby chicks everyone wants to rescue, while waiting to be sent off for the slaughter. it's a crude analogy but then - it's a cruel reality (insert shrug). the entirety of services is unilaterally focused on children. but its not just the services, i'd argue: its the culture itself. even when i watch educational videos or programs the language is always "autistic children" or "your autistic child". i've always found it really disturbing because i can't think of any other diagnosis that disregards the existence of people beyond a certain age bracket (beyond those with very short life expectancies where there are few adult cases on record).

There a billion other people on the scrap heap for various other reasons. What can we do for each other? I know a functional old couple that has one working memory and one pair of ears between them.

Even though I was diagnosed with AS way back when I was 6, I'm 20 years old now, and I'm absolutely dismayed by the lack of support there is for adults on the spectrum. In our society, it seems as though if you're an able-bodied individual, that if you have any sort of mental health problems you're supposed to "suck it up" and slave away like everyone else. Even though AS only started being diagnosed in 1994, the fact is that it's not far off from HFA, and HFA has been known about for a long time. Kids with ASDs may get all the attention, but adults on the spectrum have their own unique issues, and it's not just ones on the lower-functioning end of the spectrum.

Am I able bodied? Pretty much. Am I intelligent? In some ways. Can I put up with BS? Hell no.

One reason for lack of adult supports at least in the US is that a miniscule percentage of of government money goes for adult supports and research. The link below leads to thread in the advocacy section about people trying to do something about it.

http://www.wrongplanet.net/postt253451.html
_________________
Being an Aspie-Autistic is like running in a marathon where everybody else is running in the opposite direction.

AQ=34:

Same here in Tennessee - no help available locally and the nearest shrink is 90 minutes away... and he specializes in kids with special needs.
I haven't been able to think of anything this guy can offer me that would be worth the drive, and the money (no health insurance).

The Combating Autism Act of 2006, Pub. Law No. 109-416, is an Act of the United States Congress (Senate Bill 843) that was signed into law by President George W. Bush on December 19, 2006. It authorizes nearly one billion dollars in expenditures, over five years beginning in 2007, to combat[clarification needed] the autism spectrum disorders of autism, Asperger syndrome, Rett syndrome, childhood disintegrative disorder, and PDD-NOS through screening, education, early intervention, prompt referrals for treatment and services, and research. Wikipedia

This is really disturbing. Why is a different way of communicating and perceiving so intolerable?

To authoritarians, anything different is a threat. To average people, different ways of commuticating are as inconvenient as foreign languages.

Dear One you are so clever and such a thoughtful person. I really appreciate your observations. x

I'll admit,the government has not stepped up to the plate as far as support for autistic adults. BUT, primarily our support should be from fellow autistics. Start an autistic support group in your area. Why not? Plan cheap or free autistic activities in your area. We need to get together and support each other. Please, tell me of any person you greatly admire that had no support. No matter how independent, there seems to be support, even more support, for the most succesful independent people.

I've actually been thinking of doing this BUT I always get stuck on what you just suggested...

What kind of "activities" and "organized support" can you offer to people who, generally speaking, do not do well in groups and prefer to be alone?????????????
Seems like a catch22 kind of problem to me.

Yeah, I could do with a bit of support myself sometimes.

yes, and who have problems managing their own organization, much less creating and maintaining an organization to serve others....

this is why I get annoyed with (and incredulous at) all those many people whose first response to "I need help with basic things in life" is "create a support group!" I don't know how this took hold in the popular imagination as some kind of magic for meeting the needs of the needy -- why, just tell 'em to go help themselves! Only with groups, so it sounds friendly! -- but even when people mean well by it, they seem not to understand what "needy" means. Maybe they're confusing it with "lonely" or "wanting hugs and sympathy but otherwise fine".

Long ago I put together and ran a single-mothers' group (because, as a single mom of a young child with no family support, I had so much time and energy for organizing and running a support group). After all, it was just what everyone said to do. Make a support group, yay! It was hellish. The people who turned up were not some sort of mythical strong, well-supported band of single moms who could help each other. They were deeply needy people, often mentally ill, who NEEDED HELP. And didn't have much if any to offer. I was certainly not qualified to help them, and even if I had been, I wouldn't have had the time/energy/security.

Support has to go from the strong to the weak; that's the idea of support. The weak can't actually support the weak, they're just trying to keep breathing, man, keep getting from day to day themselves. It's an American perversity, telling the hungry to get together with other hungry people and make Thanksgiving together.

When it comes to AS support, people who navigate society well enough that they can bring others along are the ones who have to be the helpers, translators, explainers, interceders. And, yep, someone else will have to pay for it. When will it happen? I suspect it'll happen when the people who run autism services for school districts, esp. high schools, see an opportunity to work and get funding with the people who do jail-alternative and community-mental-health services, and have a particular interest in helping their AS students manage as adults. And when social-work schools come up with the brilliant idea of offering certificates in AS support services for adults. My guess is that where you find universities that offer this certificate, you'll find support services.

Bingo.
When I imagined what it might be like to start an AS group, if anyone actually responded, I saw a group of people looking down at their hands and thinking, "Now what?"

You are right on the money with the fact that the helpers need to actually have the knowledge of how to help those in the group.

Great post, Tarantella64.

Aspies have accomplished this

All directors, board members and facilitators are on the spectrum
http://grasp.org/main

http://grasp.org/page/grasp-support-groups

Other support groups are run by Autism associations

None of this is any substitute for government and business giving us even a fraction of the support they give to other people who are having problems. And it is unfair to ask people who are bad at organizing to do this. But help does not seem to be coming soon, it seems a society is putting us HFA people back into its all our fault, it does not exist category a lot of us middle ages and older Aspie-Autistics spent most of our lives living in. So we got to do whatever we can for each other. Now that I have gotten a taste of acceptance and understanding I do not feel like losing it.

You are sooo spot on Tarantella. A lot goes into running a group and some of the very qualities needed to run a group are exactly the types of things that asperger's/autism folks have a lot of difficulty with. But you are right it is a very american thing to tell people to go help themselves and quit their yapping as if everyone is born with the same skills and toolset!! !!