This topic comes from a discussion in the Help on the Way topic concerning various folks' experiences with autism. Here's a place to hang out, discuss, learn more, and generally look out for each other. ,This topic comes from a discussion in the Help on the Way topic concerning various folks' experiences with autism. Here's a place to hang out, discuss, learn more, and generally look out for each other.
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 on...so 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... MacLain
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!
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!
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
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
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
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/
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!
re the accompanying
article, the alert Head will note that it is by our own Steve Silberman.
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
Here are a couple of websites that were given to me by TEACCH...http://www.grasp.org/ http://www.autisticadvocacy.org/
Another useful read.
Another very useful book for understanding autism is "Thinking in Pictures" by Temple Grandin. Grandin is one of the leaders in building equipment for handling large animals. She also has autism. At last report she was a professor at Colorado State University, although I'm not sure if that's still accurate. She writes books on animals and autism. She says that her autism actually helps her understand animals and see things through their eyes. She has written several other books on autism but I can't recall all the titles right now, but anything by her on autism should be helpful. She is also a frequent speaker at seminars on autism.
I saw my son come out of his shell
on Sunday night in Philly! He's always enjoyed the shows but something special happened at this one. He was striking up conversations with people (I think he's starting to realize that Deadheads are cool with his autism). I wish I had video of him singing "You know our love will not fade away" at the top of his lungs while clapping out the rhythm at the end of the 2nd set! After the show he was telling everyone "That was the hottest show I've ever seen!" It was an awesome experience for me. There's definitely something therapeutic about the music and the scene! Thanks to the band and all you Deadheads out there!
What a wonderful story
tphokie! Can imagine how grate that felt to watch your child feel so much enjoyment and comfortable in his surroundings!********************************** By trying we can easily learn to endure adversity -- another man's I mean. Mark Twain
very cool, tphokie!
so glad your son loved the show and that Heads are being cool and welcoming with him.
I'm happy that your son started coming out of his shell at the show. I had a similar experience long ago, and here I am, still joined at the hip with the music and the scene. There is really something therapeutic being among people who are understanding of other's differences. My thanks to all the heads out there, especially the ones at the Philly show...deadheads are good people...I'm happy you got to share that experience with your son. I'm biding my time until I can get out there with my boy. With any luck, this time next year we will be able to afford leaving the house. I think tphokie is right, the people on the spectrum are gonna start coming out of the woodwork eventually, because the fact remains, the deadlot and Dead shows are good places for autistic people for a good many reasons...so I expect that there are more of us out there. I went to an autism forum today...they were teaching school teachers about autism, and part of their training is talking to some aspies and asking questions. I took some notes, but I don't wanna post them yet, I'll wait until next week's forum and post both at once. I'm just blown away by tphokie's story right now. Here's to the boys for making our scene possible, here's to the fans for making our scene possible, and here's to you MaryE for making our online scene possible... Nostrovia
Here's a question if anyone can help
My son Josh (the one with autism) was observed twice yesterday looking straight ahead but his eyes were moving rapidly as though tracking something moving very fast. His Mom observed this once and then I saw it later in the day. Both times he responded quickly when we called his name but was unable to duplicate the movement of his eyes when he tried to do it. He has had no history of seizures to this point but is 14 and seizures often start in kids with autism at this age. People I've discussed it with suggested seizures or possibly hallucinations. My boss said, "sounds like he's tripping" only half jokingly. I replied "Maybe he got into something in Philly last Sunday that hasn't worn off!" but I'm sure that is not the case! We will of course discuss this with his doctor on his next visit but I wondered if anyone else has had a similar situation and might give some insight. Thanks, Preston
I will ask my friend
tphokie, later today when he comes online, whether he has any info to share with us about this eye wandering topic. I would also suspect, like your boss joked, that he may have been in a sort of dreaming while awake (daydreaming if you will) state-but then I am no expert so I will ask.********************************** By trying we can easily learn to endure adversity -- another man's I mean. Mark Twain
I think we will definitely do that!
Preston, I've seen my son have small seizures like that before. It was like he was starring off into space, just absorbing something, or concentrating really hard, and like your son he wouldn't respond. Does your son or you ever experience tics? This week I got together with a couple of other aspies, and we are starting a group in our town called the Autistics Self Advocacy Network...ASAN. Look online and see if there is a chapter near you that you could join. It is an organization that is meant to be a network of sorts for folks like us. Nero Typical people are encouraged to join as well, but they can't be officers. I went to an autism forum for teachers yesterday. It was pretty cool to get to relate stories of autism and how it has affected me/us for years to people interested in learning about it. I related a story about my being in eighth grade, and I didn't know that these guys were trying to make friends with me by joking around. It was my first day of school in a new town, and I was sitting in class just waiting for the bell to ring. Anyway, this group of guys were all sitting and laughing at something they got from this girl's purse. The "ringleader" called me over, and I looked and they all burst out laughing even harder. I didn't see the appeal. I didn't know what was so funny, so I only assumed that they were laughing at me. Tired of having been picked on and singled out, I singled out the ringleader. As soon as the bell rang I followed him out in the hall and waylaid him into the lockers. He scrambled to get up and ran down the hall screaming that I was crazy...see, I didn't realize that they were trying to include me, not single me out. This isn't the only time this has happened to me. It also happened a couple of times in college. Luckily I never got in to terribly much trouble. Now I am a different person where this is concerned. I've learned not to assume that people are singling me out. We talked about other issues like sensory issues and public opinion. One thing that has always been a problem for autistic people is bullying...I hate to see it, but it is really up to us to learn to deal with it until the day comes when we rule. Just kidding. Groups like ASAN are meant to educate the public and try to sway their opinion in the right direction. Until that happens, we'll just have to learn to deal with the bullying. Preston...good luck to you and your son. It shouldn't be serious, just something that is related to an already known condition. I'm trying to help you not worry, but you should definitely go see your doctor about it. See you guys soon. We are off to Floydfest this weekend. I entered about thirty contests the other day, and I won one....four day VIP passes. We even get massages. This is going to be our vacation. Have a great weekend. MacLain
I'm so happy for you! Floydfest is a great festival, its our favorite. Getting a VIP package should be awesome. We went last year and were planning on going this year but our plans changed. Its a bummer we won't get to meet you there. I'm sure you'll have a great time and it should be a fantastic getaway for you! Thanks for all the helpful info. Preston
New scan could improve autism diagnosis
This may of interest...featuring on BBC news today http://www.bbc.co.uk/news/health-10933276
and more here
Thanks for the post. I read this article and this could make a huge difference. It took over 2 years to find out what was going on with our son. This was 2 years of agony for us and it was 2 years he went without services that could have made a huge difference in his quality of life. Having a physical marker would be hugely important. Our daughter has Down Syndrome. She was diagnosed prenatally with a simple chromosome test that indicated in black and white that she had DS. She started getting the services she needed literally from the moment she was born! No one ever questioned whether she had DS. The facts were right in front of them. On the other hand, we have had family and friends question whether his diagnosis is accurate. If people, including health professionals, can see it they believe it! Thanks again for this encouraging information.
Checking out my son's new school
My son with autism starts high school this year. Today we went for a tour of his new school. I threw on a Grateful Dead t-shirt this morning. Considering where we live I was shocked that half of his teachers are Deadheads! One of the special ed teachers is a Head and told Josh whenever he needed some down time (as he often does) to come to her room and they would listen to some Dead! That's one of his favorite ways of calming down at home so this should be a great option for him. I really feel confident that having Dead heads as teachers will make this a great year for him!
Sounds really terriffic tphokie!!!!!!!!!!!!!
Even more important than the music in itself is that it seems that you've found a place where the teachers will be adaptable to his needs. I bet you will make all the difference in the world! Congrats and I wish your son a terriffic school year.********************************** By trying we can easily learn to endure adversity -- another man's I mean. Mark Twain
I don't watch awards show. I find them cheesy and boring. I wish I had watched the Emmys last night, however. HBO made a movie called Temple Grandin which won several awards last night. I have yet to see this movie as I don't have HBO so I can't comment on the film. For those of you who don't know Temple Grandin she is a woman with autism who has written numerous books on autism. She is a very inspirational figure in the autism community. While the film was winning a number of awards last night the real Temple was introduced to and spoke to the crowd. Definitely a great format for raising autism awareness! Has any one seen the movie? Is it available on DVD?
my dad saw the movie you are talking about. He told me about it in our last phone conversation. He was a psychiatric social worker for over 20 years, and said was a very well done film. Will suggest him to you on FB (he loves new friends) and he can tell you more.********************************** By trying we can easily learn to endure adversity -- another man's I mean. Mark Twain
The magic of music
Josh and I attended the Festy Experience in Roseland VA a couple weeks ago. Once again I saw how music helps Josh connect with others. A good friend of mine camped with us and for the first time he and Josh really connected. Ron (my friend) referenced the magic of music. He really came to appreciate Josh as a person over the course of the weekend! The two of them are now sharing jokes and really relating! What an awesome experience!
this came up in another topic
and looks pretty interesting: Bob Weir & J. Ralph Collaborate on Wretches & Jabberers Autism Documentary Soundtrack.
A grateful thanks...
I see this forum has been quiet for some time however I am pleased I found it - as we are in the process of finding out where our 2.5 year old son falls on the spectrum and if indeed it is autism. He has been involved with a program called Birth to 3 for speech as he is non-verbal but has lots to say jabber-wise. We've been in the program for 6 months and have heard him say "bah" for bye and "bur" for bird. It's been sweet music to our ears. Birth to 3 has recommended us to a developmental specialist whom we see in a couple weeks from now. The unknown is hard as we "fit" nowhere for support groups as we do not have a diagnosis yet. As our son "looks normal", family members and friends are having a hard time understanding that something is going on. So, its been lonely but we press on. I just wanted to share that I found strength in this forum and want to say thanks to you all.
I've been away for awhile but I was moved by your post. Glad you found some strength here. Please feel free to contact me if you need anything.
He's doing well overall!
Continues to enjoy live music! We just saw Railroad Earth a couple weeks ago and he had a great time. We saw Furthur at Merriweather Post Pavilion last summer and he was blown away!. He turns 17 this summer and the hormonal shifts of being that age coupled with autism have created some challenges for all of us, but he continues to be a sensitive and amazing young man. He teaches me new things everyday!
Some folks might want to take a look at this group, which received the most recent Bill Graham Award from the Rex Foundation. They work with autistic folks; music is involved! http://rexfoundation.org/2013/02/14/sharing-a-letter-from-hidden-wings/
Speaking of Downs Syndrome (not unrelated)
From the French Press Agency toay AGENCE FRANCE PRESSE KATHMANDU: A 15-year-old American boy has become the first teenager with Down's syndrome to reach Everest Base Camp, according to his father, in an attempt to inspire different attitudes towards people with disabilities. Eli Reimer, from Oregon, reached the 5,364 metres high camp in Himalayan mountains in mid-March after 10 days of trekking. "Part of the focus of this trek was on having at least one disabled trekker go with us and through their attempt, we wanted to point to the abilities of the 'dis'-abled," his father Justin, who was part of the expedition team, told AFP. The trek was also a fund-raiser for the Elisha Foundation, founded by Eli's parents, which works with disabled people and their families. Eli is believed to be the first teenager to reach the base camp.
I would be remiss
if I did not point out that there's a new thread involving our own Steve Silberman, who in his other life is a noted author on the subject of autism. Head on over and talk to him: http://www.dead.net/features/all-family/all-family-steve-silberman.
Not about Dead Heads, but great article
How Apple's Siri Became One Autistic Boy's BFF. I used to know the author/mom back in the day, and love her stories about her kids.
Just an observation on autism
Look into the MMR vaccine. I know it won't help if your child already has autism but if you are having children or are about to vaccinate your young ones please investigate MMR.
Just an observation on autism
Look into the MMR vaccine. I know it won't help if your child already has autism but if you are having children or are about to vaccinate your young ones please investigate MMR.
Hidden Wings drum circle video
Hidden Wings, a Rex Foundation grantee that works with people with autism, hosts a drum circle on the beach, to be made into a video to be screened at the Fare Thee Well shows. June 6 at Refugio State Beach in Goleta, CA: Details
@all Angels have wings...
that is so cool..... thanks for sharing that....