Any parents of a 20-something adult with autism??

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LimaBean89
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19 May 2008, 11:04 pm

I had a question that I was thinking about the other day while watching the documentary Today's Man. My cousin (age 23) has mild to moderate autism and while taking to my aunt yesterday she expressed the same question as well....

How would you best help an adult with moderate autism (about early to mid 20s) to live their lives, make a decent living, etc.? What are some tested methods that have worked with dealing with normal adult situations and conversation comprehension? Since nowadays autism has much more awareness than one or two decades ago, parents, doctors, and therapists are more aware of it and therapies at earlier ages are more widely available. But a lot of these werent available for those people with autism who are older now, so their experience and those of their parents are much different i would think.

In Today's Man, Nicky's mom also had similar questions about the future of her son and so i was just wondering about a topic that seems like a pretty big issue with parents...

Thanks in advance for any answers, input, and ideas :)



joku_muko
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19 May 2008, 11:14 pm

I'm not sure about the conversation comprehension thing. Think that is something that comes naturally or if it is learned it is kind of too late. I always feel out there and there is rarely any conversation where its not awkward or some weird moment with anyone thats not my mom.

The thing that helped me the most was getting a social worker and getting into public housing. I also am in voc rehab and am currently working for the state. So my advice would be to take advantage of any services you can.



krex
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19 May 2008, 11:54 pm

According to most of what you see in the media...we just outgrow autism :x I am a 44 year old and struggeling because there are no resources for adults in USA. Not sure about other countries. Wish I had an answer to help...wish I had help :cry: Maybe it will happen when the cure folks realize thier kids aren't NT after all their their interventions. Perhaps they will then turn the focus on helping adults on the spectrum.


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lelia
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20 May 2008, 1:08 am

Temple Grandin has some books about that. Try "Thinking In Pictures".



LCMom
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20 May 2008, 8:47 am

My younger son was diagnosed early in the year.

Since then, we have decided that his dad, older brother, and one older sister probably have Asperger's. We do not have a proper diagnosis for any of these adults. Older brother and sister are over 21.

As we are setting up the IEP at school for younger son, I have some ideas to offer for older kids, including therapy, help for anxiety (not necessarily meds), support groups (there is one functioning down the road from daughter's college), a growing library of books.

Unfortunately, these "kids" are legal adults. I can offer possiblities
and support, but it is up to them to use them or not.

For the record, my daughter seems to have more problems with anxiety right now than my son does, as well as more difficulty dealing with people and certain situations.

I don't think they are too old to learn skills. However, I do think they have to decide to seek the services they feel they need. It really isn't up to me any more.



krex
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20 May 2008, 11:31 am

LCMOM

When you have executive function issues and social anxiety problems...seeking help IS one of the problems. I do not know your kids functioning level or any co-morbids they may have but if my parents hadn't helped me a few times in my life, I would have been homeless and probably still using alchohol to cope with social anxieties.

What age is "legal adult' has little to do with function level for some of us with AS. I know people thought I was capable of dealing with these issues myself because I got good grades in college but that is a very structured environment. Once I was out, I was completly lost. I know some with AS may resent this but I think that my AS is a form of "developmental delay". I may have been very capable of researching a papaer for school and writing a very thoughtful analysis but that intelligence does not cross over to knowing how to use public transportation. One of the most difficult things for non AS people to undersand is that we can have very high in intelligence in one area and be about 6 years old in other areas of functioning. I was 29 before I learned how to drive and I still have a lot of driving anxiety and do it as little as possible, (a good thing, considering gas prices.)


I'm 44 now and was onl DXed two years ago. My parents said they knew "something was wrong" with me by around 2nd grade but there was no information at the time. I floundered for years before I found my feet and although my parents offered me nothing but financial help after I would have "break downs" (they didn't know what other help to give),but that kept me from ending up on the streets.

How well informed is your daughter about AS ? Does she show any interest in learning about it or does she think it's "no big deal"? I was stubornly independent in my teens and twenties and thought the only problem I had was "society". But if I had read about AS, I would have recognized myself and might have been more willing to follow through with getting help in learning daily living skills, budgeting, seeking a job. Unfortunatly, unless you have a psychological break and are standing on the edge of a building ready to jump...or running through the streets naked.....it is really hard to get social service help....especially if you "sound" intellgent. I guess what I think might have worked for my parents, had they been aware of AS, is that if they had refused me financial help unles I followed through with tasks to educate myself about AS, get a DX and seek any services they could help me find.

As I mentioned, this may not apply to all people with AS. I think I am on the lower end of high functioning and I have several co-morbids that make simple tasks very hard for me. Because I am hyperlexic, I come off as intellgent, which is actually a liability when you are seeking help. That said, she will avoid a lot of painful experiences the sooner she gets help. I learned things the hard way and I hate to think of anyone else having to go through what I have or am going through.


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ster
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21 May 2008, 5:56 am

we tried to broatch this subject with our nephew- who is 29 & most definitely aspie.........he absolutely refuses to accept this. or even consider it.....he lives with his mom, doesn't work, stays in his room...his mom doesn't force the issue either......although his mom has asked us to take care of him when she passes on. so frustrating that she knows he's not able to take care of himself, but won't seek help :evil:

hubby got his dx at the age of 38. he only went for a dx after our then 13 year old got his dx.

you can provide information about AS, but don't be surgprised if it's met with disbelief



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21 May 2008, 3:14 pm

Just wanted to add...aspies don't like change, including cognitive understanding of themselves and the world=gestalt. Sometimes it can take me a very long time to process new information, especially if it requires me to reframe my whole concept of reality. For me, the most likely cause of me to"be ready" for change is desperation. I had to be homeless for 6 months before I was ready to stop my drinking. Prior to that point, I chose to believe that I was a casual drinker because I surrounded myself with people who drank as much or more then me<----typical alcoholic technique of denial.

When I stumbeled apon AS, I was already ready to except that the way I had been trying to cope with adulthoodd was not working...I knew something was wrong and had moved past the belief that all my problems were caused by everyone else. It sounds like your nephews mother is enabeling him the way many partners and family enable alchoholics. They have their own psychological problems for wanting to do so....like, liking being needed. Yet they do themselves and the individual a disservice by doing this.

All you can do at this point is plant seeds of ideas and when the person is in enough pain, they will be more open to excepting the new information.


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25 May 2008, 1:31 pm

There is help for adults with AS in the US. It's called Dept of Econonics Vocational Rehabilitation. They have gotten me help via a neuropsychologist and occupational therapist. The best thing for Aspies is to have a occupational therapist or OT. But make sure the OT stays focused on helping in the right avenues whether you have social skills trouble or organizational issues or whatever.



krex
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25 May 2008, 3:37 pm

Ticker wrote:
There is help for adults with AS in the US. It's called Dept of Econonics Vocational Rehabilitation. They have gotten me help via a neuropsychologist and occupational therapist. The best thing for Aspies is to have a occupational therapist or OT. But make sure the OT stays focused on helping in the right avenues whether you have social skills trouble or organizational issues or whatever.


Thanks for the info Ticker. Did you need a referral or just walk in with your DX papers. Also, I have had employment for many years but the kind of work (social services) has become increasingly stressful...do you think that would disqualify me for assistance?

One of the main things I would like is to see a real neurologist to see if there is anything else going on in my brain...I can't tell if the problems I have been having are stress related or caused by some other neurological break down. I would also like some testing other then just ..."You have AS"...that does not help me understand my strengths/weaknesses or tell me what kind of work would be best for either.


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25 May 2008, 5:20 pm

krex wrote:

Thanks for the info Ticker. Did you need a referral or just walk in with your DX papers. Also, I have had employment for many years but the kind of work (social services) has become increasingly stressful...do you think that would disqualify me for assistance?

One of the main things I would like is to see a real neurologist to see if there is anything else going on in my brain...I can't tell if the problems I have been having are stress related or caused by some other neurological break down. I would also like some testing other then just ..."You have AS"...that does not help me understand my strengths/weaknesses or tell me what kind of work would be best for either.



Hey Krex I am PMing you the details on Voc Rehab. Some of its kinda personal.



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25 May 2008, 7:06 pm

Quote:
I may have been very capable of researching a papaer for school and writing a very thoughtful analysis but that intelligence does not cross over to knowing how to use public transportation.



I've graduated college with straight A's in both my bachelors and masters degree, but I'm terrified of attempting to figure out public transportation. I'd rather drive with my GPS then risk getting on the wrong bus. (of course I'm rarely in an area with public transportation in the first place which may be part of that)


Its important that negative statements about your willingness to help aren't brought to them through others. Aspies might shut down in many areas of life but never bring up their fear about your not going to help them as someone else told them you were planning. I know that happened to me


Quote:
I guess what I think might have worked for my parents, had they been aware of AS, is that if they had refused me financial help unles I followed through with tasks to educate myself about AS, get a DX and seek any services they could help me find.


That would have likely resulted in a suicide attempt for me. if you go that route you should be extra careful to make sure you aren't giving the impression that you don't love your kid as is or that you'll only like him and help him out if he changes into the child you want


Make sure you know their triggers in conversation and how they express upset before you bring up the trigger. ie Do they become quiet? look off to the side? Not everyone makes it obvious your words are hurting or angering them. the clue might be so subtle its barely noticable to you

Whenh I talk to bfs dad and he says something that upsets me I get quiet. Then he usuallys asks me about something in my life, perhaps some accomplishment, and talks about that for a bit before trying the issue again. It works, though i must admit I don't particularly like it. i guess it makes me feel "played" or shows that he understands quite a bit more than what I've said and might have caught on to something I don't want him knowing