How to support adults with Asperger's syndrome?

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What support or help or training do adults with Asperger's need? I mean especially people diagnosed later on in life, who are coming to terms with the diagnosis. I am being assessed (later on today, yay! - long time on the waiting list) for a support program and I have very little idea what to expect, or what support etc I need.

I know 1) I would like a better idea of my particular impairments, and where I am on the spectrum; 2) I am socially isolated, and that also unfairly socially isolates my children; 3) I am not in regular employment and would like to work.

I am now past being able to work, but I would like to see my children and grandchildren offered opportunities to at least understand how we all came to be so alienated.

Becoming a peer counselor and just talking to these people would be a good idea.

The only reason I keep talking about the Americans with Disabilities Act is because I was looking into it in connection with my other health issues before I started realizing I might also be on the Spectrum.*

Now, the ADA addresses public, commercial, and nonprofit facilities or entities; employment; transportation; and telecommunications**. See this Wikipedia link. And it does this not necessarily in all cases, neither regarding all Disabled persons nor all facilities, entities, employers, or transit providers. To the point, ISTM fair to say that the ADA doesn't necessarily expect or demand specific helps for specific health conditions or "different abilities" (except pretty detailed specifications regarding Accessible public rest rooms), but rather, starts right with you and asks, What do you want to accomplish with regard to this or that particular facility, entity, employer, or transit provider. Then it asks, How do you think you might be able to accomplish it there, and how might that facility, entity, employer, or transit provider help you to do so reasonably, i.e., without what the (yet imperfect) law considers undue expense or inconvenience to them: "Reasonable Accommodation"? Or as they put it in law school, "What do you want the law to mean?"

What I mean to say is, the ADA isn't designed "wholistically" to give us Disabled people a better life per se, but rather 'merely' to facilitate our fitting into non-disabled society more, especially regarding very basic questions of accessibility, employment, personal needs (e.g., bathroom), and getting around ... IOW, pragmatically.

I don't know if you live in the USA, but I thought approaching your question this way might help do so in a little less open-ended way that might be easier to get an initial grasp of. I don't know if similar laws outside the USA are structured like this or differently, but this might give you some ideas anyway.

Plus, I'd be surprised if your evaluator(s) are unable to offer helpful hints and guidance as well.

Sorry to be long-winded about this --- a friend once said I should've been a lawyer ... and yes, he meant it as a compliment!

For my part, not to contradict myself, but I'd be curious what kinds of support or aid folks in your situation are getting or trying to get, since I'm in a similar situation. (The "pragmatic" approach is often harder for me because with my multiple disabilities, I'm pretty isolated, unable to support myself through work, with some mobility issues, etc., and have been for over a decade.) Even if we're in different countries, we could get ideas at least.

And good luck today!

--Pete

(*--Or is that the Wells Fargo Center now?! ! A Philadelphia joke....)
(**--i.e., regarding hearing-impaired people)

Minimally, I'm aware of support groups for people with AS (though I've never attended one yet).

I'm also aware that we might want to make sure we understand that that is what the advertised group is for, and not, say, for parents, family members, caregivers, etc., of people on the Spectrum. While those folks might have a Temple Grandin moment being able to get a "report from our world," especially if their Neurodiverse person is very young or nonverbal, I'm not sure how useful attending such a group would be for, say, an adult Aspie her/himself, long term.

Ive always felt the support groups would be of much greater help to those diagnosed early on. Yeah, the american disability system is screwed up beyond reason, and I am currently going thyrough my own version of hell dealing with setting up an appeal for the states decision not to give me any assistance. Its what happens to the so called "invisible" disabilities. To me though its not that invisible though. :/

You could need help with social skills training and executive functioning skills as a starter. As for your kids, get them involved in clubs and organizations to be around more people with likeminded interests. You could also get some testing, preferably a complete neuropsych (which takes about a week), done to determine your areas of difficulty

I did the evaluation session and will see if I am accepted into the program. Social skills and executive function were things that came up, along with the obvious assistance towards some kind of gainful activity (whether with or without income), and counselling because I have some psych issues that seem fairly normal for adults with Asperger's. They do some group excursions too, although I have never thought about being in a roomful of people with Asperger's before - fortunately it sounds like it is mostly outdoors activities!

My own top 5 issues I had before this opportunity arose were executive function, theory of mind, OCD, feelings of shame and sensory integration.

This is an interesting thread. I´m really interested in helping adults with AS sometime in the future, so I`m hoping I can get involved with one of these programs.....I´d like to try. I think there is far too little offered in the way of help, for adults on the spectrum. So I would also be interested in suggestions people may have (I may probably start a thread about this sometime too). It would mean changing my job and my life quite a bit, which I´m rather scared about, but I would really like to help people. Oh, and if anyone has any feedback on how I would get started doing something like this, I´d be interested to hear it.

Adult support is sorely needed. I'm of the opinion that maybe the only way it'll ever happen to the extent that's needed is if some Aspies take it upon themselves to make it happen. Aspies for Aspies.

Who else could possibly understand what's needed?

I have financial support form the government, which is huge. To have that security every month reduces my stress levels enormously. I am one of the lucky ones to get on the program I am on. But I was observed by professionals in the medical community for many years, so I kind of paid my dues by cooperating as best I could. Support from others is difficult, because aspies are truly the only people I can relate to. With it being a rare disorder, I do not get to interact with aspies (other than the internet) and so stay mostly isolated.

I agree very strongly with support for adults with Asperger's (and other PDDs)! The whole thing of only providing support for children and teens is preposterous! There are legions of people out there who were never tested - never diagnosed who suffer in silence.

People have to unlearn the whole thinking that there's something WRONG with themselves - that they're just DIFFERENT. Whether I have AS, PDD-NOS, or something else, I am finally understanding that I am DIFFERENT...not ODD or WEIRD...or any other negative connotation.

In reading about EXecutive Functioning along with rigid-and-pragmatic thinking, I have reflected back on my sharing in Twelve Step meetings and realizing that these have been big issues with me in some key areas that has affected my ability to succeed in some key areas - like a career and various living skills.

This program is funded by the government, channelled through an autism charity. That means all the staff are exclusively working with autism or Asperger's. The adult intervention is a new service and has come about because the first wave of childhood-diagnosed Asperger's adults are now reaching the age where they no longer qualify for educational assistance (which is only available at primary and secondary school age), nor do they qualify for any other state-funded assistance. Many are ending up going through psychiatric services in order to get any help, and although that route does access valuable services (e.g. occupational therapy or job-seeker's counselling), it is not the most appropriate environment.

Yes, and I could sure use some help right now!



Can you tell us the name of that program? The help I need is more along the line of advocacy, but it would be helpful if I could at least reference that program while talking with the SSA.