Grateful Dead

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TigerLilly's picture
Joined: Jul 2 2007
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
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!

Hozomeen's picture
Joined: Jun 22 2007
Thanks Mary

I was diagnosed with Asperger's Syndrome at age 33. My son was simultaneously diagnosed with the same. I've lived with this my whole life, however the past couple of years have shed considerable light on communication difficulties and misunderstandings I've had and still have. The difference now is, I know what it is called. There are great books out there that describe me to a T...and I'm sure if you are thinking that you might be the same, that you are as confused as I was. One of the most common experiences I have heard from adults with autism is that being diagnosed turned all the question marks into "Oh Yeah's" and "that makes total sense." Before I continue, I just wanted to throw out the invitation I made in Help on the Way...anyone with questions about being on the spectrum, possibly being on the spectrum, or being a parent on the spectrum, please ask them here. If I can't find an answer, I'm sure we'll run it down. I participate in forums and panel discussions about adults with autism, and I've been active in the autism society, so if I don't know something off the bat I'll at least exhaust whatever resources I can to find out. I for one just needed someone to talk to when I was going through the surrealistic reckoning that is finding out you are and always have been autistic.

Autism is like living with confusion. It seems like I look back on my life, and all along I have been finding a piece of the puzzle that fits here and there, and then before it was complete, I randomly threw the puzzle on the ground scattering all the pieces before I could ever see what the big picture was. The worst part is, it was me doing the piecing together, and it was me doing the throwing...which can be frustrating if you really want to complete a puzzle you keep throwing on the ground and breaking apart.

Being the parent of an autistic child is equally as frustrating. Just remember one thing, if you are the parent of an autistic child, there are certain things we might need, but might not tell you. Even if we need space, we still need you in our lives, so please don't give up. My experience with my parents has always been a roadblock, or problem for me. I would say that even though I grew into adulthood, before I knew about autism, I couldn't figure out why I allowed them to affect me in the ways that they did. I won't get into it, but the point is that it doesn't have to be this way for you parents. A small amount of advocacy and understanding goes a long way.

I plan to write more about autism and post it. For the time being, I am excited and curious to hear from the other heads who are involved with the spectrum whether they are on it, or spawned someone on it, or just know someone on it. Perhaps you might have a friend who is on the spectrum who has questions that are unanswered, but that person doesn't want to ask...with their permission please ask, and we will try to help. Help is about all I can offer right now, but I can offer it...and knowing my deadhead brothers and sisters, together we can find a way through.

In general, however, I can go ahead and recommend two books for those with questions about Asperger's in particular. One is like a textbook. It is The Oasis Guide to Asperger's Syndrome. Just search for it on Amazon, but I checked it out from my local library. The other book is a work of creative non-fiction by an author named John Elder Robison. John Elder is a fascinating person who wrote a book about growing up with Asperger's Syndrome and then being diagnosed as an adult. His book is called Look Me in the Eye, and I would recommend anyone to read this one, since John Elder is such a cool person in general.

Thanks MaryE for posting this new thread...I am hoping for the best. It may take off, or it may take a while, but eventually we'll come out of the woodwork. And hey, there's also the possibility that I will have questions or difficulties that I need some input I've got that going for me now too...thanks to all of you out there.

Please post stories, thoughts, experiences, or whatever. I'm looking forward to this thread continuing and seeing where it goes from here.

Nothing left to do now but smile smile smile...positive vibes everyone...


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Roll Away the Dew - Heads on the Spectrum