Grateful Dead

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Hozomeen's picture
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Regional Resources

Here are a couple of websites that were given to me by TEACCH...
http://www.grasp.org/
http://www.autisticadvocacy.org/

tphokie1's picture
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Thanks for the article, Marye.

I heard about the high rate of autism in the Silicon Valley and the idea that it could be related to the aptitudes of parents. That many with Asperger don't fit the DSM diagnostic criteria was something I hadn't heard and may be useful information for me personally. I always dismissed any suggestion that I have Asperger specifically because I didn't fit the criteria. Peace, Preston

marye's picture
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re the accompanying

article, the alert Head will note that it is by our own Steve Silberman.

tphokie1's picture
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38° 29' 28.122" N, 78° 35' 35.0592" W
Joined: Jun 9 2007
Took the Autism Quotitent test

My score was 36. So according to that perhaps I should take more seriously those who tell me I have Asperger Syndrome!

Hozomeen's picture
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Lilly

I'm sure your friend has a doctor if he is diagnosed, so I won't try to find that. I did find a group though for children and adults at meetup.com:

http://www.meetup.com/CASPAN/

TigerLilly's picture
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My friend

is in Chicago.
He was a friend of mine in college, and then after college-but I lost contact with him when I moved to Europe. Found him after like 17 years on FB. I think he has found some resources of his own-I know he has posted a couple of infomational videos on YouTube for others with Asperger's BUT I will still send him any information you send me. I have also told him about this thread, so we will see whether he turns up or not. He is very proud, and wary of ridicule, so he may or he may not. I cannot push or force him. Part of why we are friends is because I can go with his flow.

Is interesting you mentioned "algorhythms" because a documentary I was watching about autistic savants was saying that a common pattern (oops pun intended) for all autists is to create or utilize mathematical patters to bring order to the chaos that daily life brings them. I know my friend does things like charts baseball batting records and all sorts of complicated tasks that he sets up for himself. These routines are how he copes. He has a photographic memory, is a brilliant mimic, and yeah well I am very fond of him!
**********************************
By trying we can easily learn to endure adversity -- another man's I mean.
Mark Twain

Hozomeen's picture
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Look me in the Eye

I know the feeling. Sometimes I can't even look at people when I am talking to them, and when I do, I usually miss something they have said right to me. Still it is a social norm that as you just said can have dire consequences if not followed. Over the years I have developed an array of "already answered questions" or sometimes I called them "rules" but they all can be described as algorithms or finite sequences of instructions. Now I can look people in the eye whilst talking to them, but I am only following the program. If for some reason I am mentally drained however, it can be difficult for me to do this. I try to maintain focus on something rather than the eyes, especially if I need to communicate. This has been especially difficult when it comes to doctors, since avoiding eye contact is a symptom of lying.

Here in North Carolina we have a program through UNC called TEACCH. TEACCH is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders. During our meetings, they not only take time to communicate with me about what is difficult in my life, but they also work with my wife, who is neuro-typical or not autistic. This helps us on two fronts, and though she was doing a great job before, she has become an invaluable advocacy partner. We practice things like making notes for the doctor's visit, and Marjie (my wife) accompanies me to meetings and appointments. This helps my comfort level, but more importantly, she fills in the gaps I might leave out for some reason or other. Just as a for instance, I broke my finger about a month ago. It was broken the last time I saw my doctor, but I never mentioned it. Today Marjie brought it up, and now I am getting ready to go have it x-rayed. Otherwise, I might never have mentioned it to anyone; it just wouldn't have occurred to me.

Is your friend in Spain or the US? If the US, which state? I will try to find a similar program to TEACCH near where he is, and you can do the same just by asking around or contacting the autism society. We are also lucky enough to live in a city that has social groups that meet every so often to discuss issues for adults with autism. It is different when you get diagnosed as a kid. My son has been going to a great school for a couple of years now, and he works with special speech and vocational coaches. By the time he reaches kindergarden, he should have social skills I never even would have fathomed at his age. I had to grow up making it up as I went alone, just like your friend. The good news is, there may be groups or individuals who would be able to help him...we just have to find them.

Otherwise, it might help if he read John Elder's book. Sometimes just knowing you aren't alone is a big help. There are also a couple of good books by Catherine Faherty called Asperger's what does it Mean to Me, and Communication what does it Mean to Me. Catherine is actually one of the wonderful people at TEACCH that we have been working with. I usually make an appointment with Carolyn, my advisor, and Marjie makes a simultaneous appointment with Catherine so that we can structure our meetings the way I just described. They also work with our son Jack, and with us regarding techniques and theories that have worked for other people to solve similar problems.

Speaking of John Elder, I spoke with him on Facebook yesterday and told him that his book was being advertised on dead.net. He said he never would have looked for his book on a deadhead forum, but he also said that "us aspergerians are everywhere..." This is true, we are everywhere, but just in the woodwork where it is difficult to spot us.

To tphokie1, if you read through the OASIS guide, you may find that you answer yes to a good many questions. As far as the apple not falling far from the tree, you may be onto something. This is a genetic disorder, and though women can have it, it mainly passes on from father to son. Some say that odd behavior in women is more socially accepted, which makes it all the more difficult for them to get diagnosed, and I believe that. I know several women who have Asperger's. The thing is, my father also may be an aspie. His behavior certainly fits the profile, but he is not interested in following up on it at this point in his life. He and his wife have told us that they think he has like minded qualities that are similar to mine, and I believe they too are working on a better system of communication. So anyway, I wouldn't be surprised a bit if you didn't fall on the spectrum as well. Here is a link to an Autism Quotient test that may be helpful:

http://www.wired.com/wired/archive/9.12/aqtest.html

And Gonzo, thanks for the compliment. I liked your poem haiku 2. TigerLilly, I will get back to you with any information I find out as soon as I know your friend's whereabouts. In the meantime, try the OASIS website (http://www.aspergersyndrome.org/).

Once again, thanks for the forum. I hope this helps you guys.
Peace
MacLain

TigerLilly's picture
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Look me in the Eye

That phrase caught my eye, because it reminded me of a conversation with my friend with Asperger's. He was only diagnosed at 40, and was missdiagnosed all throughout his earlier life-thus suffering alot of trauma an missunderstanding. One thing that we discussed at great length was how it is physically impossible for him to look at someone in the eyes during a conversation. If he must concentrate on looking into their eyes, he cannot concentrate at all on what they are saying to him. He said he has had every sort of negative response to this from not getting jobs to being physically aggressed. It makes me very sad that only now he knows and can be upfront about why he cannot maintain eye contact, as society expects.

I will continue to tell about him, bit by bit-and I feel very lucky that he feels secure enough to discuss his journey with me so openly.
**********************************
By trying we can easily learn to endure adversity -- another man's I mean.
Mark Twain

lamagonzo (not verified)
Thank you MacLain

For throwing some light on this subject and being willing to discuss it. I'm sure you will help many with your conversation and answers. This is definitely bodhisattva action!

tphokie1's picture
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357 Back Rd.
Shenandoah, VA
United States
38° 29' 28.122" N, 78° 35' 35.0592" W
Joined: Jun 9 2007
Great to see this forum!

Thanks Marye and thanks Hozomeen for your willingness to share! I won't repost everything I've already said but my 13 year old has autism. He loves music and in particular the Dead we've seen many shows together (Dead related and otherwise) and are currently looking forward to seeing Furthur in Philly on 7/11 (the day after his 14th birthday!). Josh is very high functioning and is a delight while at the same time being a challenge. Oh yeah, we recently found out he is an artist! He brought home a painting from school that blew us away! His biggest struggle at the moment is dealing with adolescence in addition to his autism. He is a great kid and I'm sure he, and we, will make it through this. His therapist has told me several times that I have Asperger Syndrome. I haven't totally accepted this but do admit that "the apple didn't fall too far from the tree"! I hope others who are on the spectrum and those who love them will take advantage of this forum. Oh yeah, thanks Hozomeen for the PM. I intend to get the book you suggested. Peace to all! Got to go and hear Furthur on Sirius! I'll be back soon!

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Roll Away the Dew - Heads on the Spectrum