Sunday, July 13, 2008

Back from ASA 2008: My Adventures in autism

I just got back from the national conference of the autism society of America last night. It was in Orlando, Florida. I had a pretty good time, got reacquainted with lots of old friends I had not seen in a while.

It first started out with my sitting next to a woman named Enid on the plane. She is an employee of Johnson Mayer who was doing a presentation for them on software for autistic children. We struck up a conversation and I was interested to find out that she lived in Colorado at one time and worked with Bill Bernard, the son of the renowned Mercury Mom Sallie Bernard.

I got to the conference and met my friend Stephen Shore, the autism conference phenomenon. I also met my friend Adam who was there, whom I had not seen since we first met in person in Nashville, Tn at the ASA conference there in 2005. He was 20 when we first met, now he is a more mature 23 and he did look a bit older and seemed to be able to talk better with more emotional maturity then when I remembered him. He boasted about some sort of social pragmatics program that his speech therapist was doing with him which he seems to believed helped him. Though I am nearly his dad's age, we chat on AOL all the time and sometimes on the phone and I feel that I know Adam very well in spite of the fact that I have only seen him in person a couple of times. He lives in Miami so he was just a couple of hundred miles away from the conference. I always bug him about certain girls and persuade him to try to get a job working at this local supermarket chain in Florida. I have a sort of uncontrollable compulsion to talk about these same topics with him over and over again due to my autism. He does not seem to mind too much and that makes me happy I can have a friend with whom I can do this and get away with this. Very few neurotypical people would tolerate such behavior from me. I also renewed my acquaintance with Cheri Cary, the president of ASA's San Diego chapter. She has a severely autistic son who is age 10 and does not speak but uses an adaptive communicator. I have never met her son. This is always a problem with going to these conferences. The autistics I meet are usually high functioning and I don't get to meet a very good sample of persons on the spectrum. Unfortunately and ironically, the more severely autistic people are left at home with caretakers and are considered too handicapped to attend the conference.

I also saw my friend Gail Fitzpatrick and her kids Bridget and Jan Rankowski. Bridget is a tall attractive 19-year-old redhead, very friendly to everyone. Jan gained a certain amount of notoriety a few years back because he was excluded from playing on a public playground some years ago due to behavior issues caused by Asperger's and his mother filed a lawsuit over it. The lawsuit got national media coverage. The suit is now over and Ms. Fitzpatrick and her children are glad to be out of the limelight. Jan is now 13 and has a rather pleasant sense of humor that I enjoyed. Bridget feels that she is somewhere on the spectrum also. Though I wish to cure autism, they are among the people on the spectrum that I enjoy as well as others. So much for neurodiversity's stereotype of me and other pro cure people about hating autistic people just because we hate autism in some individuals. I still remember laughing out loud when i read in the newspaper about Jan telling the school principal about how obese she had become recently. I never dreamed that a couple years later, I would get to meet Jan and his family and get to know them somewhat.

The first keynote speaker was Dr. Robert Hedron of the MIND institute. He gave a talk about the schtick of there being an autism epidemic. Seems everyone who works at the MIND has a certain political position about autism's true prevalence rising in spite of the limited evidence of this fact. Hedron also stated the completely fallacious position of autism's prevalence being thought of as 1/10,000 as recently as 1993. Only one study has shown this and it was Treffert's study which was published in 1970. The MIND institute seems to want some sort of media recognition in the way they play with the numbers. Dr. Hedron also talked about the ongoing CHARGE study which tries to correlate certain things about autism and genetics as well as other activities by the MIND institute. Temple Grandin still had not arrived, though she would be the final keynote speaker, she would not be at the conference until the next day.

After Dr. Hedron's talk I again saw Steve Edelson who runs the ARI institute in San Diego and is one of the board members as well. He seems to be Bernie Rimland's heir apparent. He was always nice to me, in spite of the fact that I have always expressed cynicism about what ARI does and about the DAN protocol in general. He was talking to James Adams, another member of ARI (on the board of directors) and when I saw her nametag, I did a double take, Lynn Redwood. I introduced myself to Ms. Redwood and gushed a bit, due to her celebrity as being the ying to Sally Bernard's yang in terms of the most well known mercury moms prior to the Jenny McCarthy days (I also met Ms. McCarthy at another conference I went to, where my friend Stephen Shore presented but that's another story altogether). I exchanged pleasentries with Ms. Redwood and she told me her son is 14 now. I told her that I was interested in meeting a celebrity like her because I had read about her in David Kirby's book, Evidence of Harm. She laughed at that and told me that now people would call her up and ask her if she really drank the wine that Kirby had mentioned her drinking in the book. She said she had a listed phone number. I told her about my essay that I wrote showing that there was no correlation between thimerosal administration tripling of prevalence of autism in the state's regional centers between 1970 and 1991. She just sort of shrugged it off, claiming that the autism epidemic was not as simple as just thimerosal and there were many environmental factors that played a role. This seems indicative of the shift that the mercury militia seems to be engaging in now that the evidence against their hypothesis is so overwhelming.

I talked to James Adams and he seemed a nice man, geniunely interested in helping his teenaged autistic daughter with the studies on chelation that he is engaging in. It had been many years since I had studied chemistry in school and did not do very well in it anyhow. So, i asked him about the relationship between mercury and zinc as a mineral that occurs in the human body. He explained to me that zinc and mercury were similar in terms of the number of electrons in their outer shells and how they were close to each other in the periodic table. Therefore mercury could replace zinc in the body and cause adverse effects. Dr. Adams was also interested in other heavy metals as well and was polite to me though I expressed cynicism in what they were doing.

I asked Redwood, Adams and Edelson if they had ever heard of autism diva and they all said that they had. So I guess when the diva was blogging, she got quite a reputation with the most outspoken advocates of the heavy metals hypothesis (other metals in addition to mercury). I wished I knew more about the work they were doing so I could give a better evaluation of it and maybe debate some fine points with them. Then again maybe it is just as well I did not know enough of the facts to debate.

There was then a seminar about how learning affects the brain but that seminar was filled to capacity and the presenters said they would just give it again the next day for anyone who wanted it and they asked for volunteers to leave the room which was filled way to capacity in violation of Florida state fire regulation laws.

Another seminar I went to was given by Dr. Bryan Jepson of thoughtful house. The place that has acquired a bad reputation among some people because of Andy Wakefield's involvement with it. He talked about the alleged autism epidemic. How certain yeasts and minerals were associated with autism and brain function associated with autism and various treatments that could help in his opinion. One of the things that stuck out in my mind during the lecture was that he stated that there had been a variety of studies trying to determine whether or not prevalence in autistic adults was the same as the 1/150 number that was considered the rate among children and none of them had found that rate. He claimed that this was evidence for a true rise in autism prevalence. Except for the Baird study that took place in North Dakota I was not aware of any such studies that took place like the ones that Jepson was describing. After the lecture I asked him what studies those were. He admitted that he could not really think of any but that I could look on SAFEMINDS website and perhaps they would have some. This reduced his credibility in my eyes.

Another lecture was not as interesting, about autism and driving that was given by Stephen Shore, the Debaudt's, Dennis and Brad. I did not stay for the whole lecture but sort of wandered off and roamed the halls in my autistic hyperactive fashion. Though the social interaction at the conference was good, most of the topics of the lectures left something to be desired. IMFAR might be a better conference for this sort of thing and I might go there for my next conference if I go to another out of town conference again.

I hooked up with my friend Adam later, and we roamed the halls of the exhibits. I met Laura Apel, my editor at Exceptional Parent magazine who published my article on autism genetics and whether or not my suffering is necessary for society. I was pleased to meet her. I also went to the autism speaks booth. I told them there was some concern about autistics not serving on any of the boards or in any positions of power. They told me there were some sort of comittees forming within autism speaks that would include some autistic people. They also recommended that if I wanted to get involved further with autism speaks that I might contact their los angeles office and they gave me the phone number. My friend, Adam, might also be interested in getting a job with them and they gave him the number of the Miami office, near where he lives. Who knows, maybe he and I can do something about the chief complaint that comes from some people on the spectrum about Autism Speaks not involving autistic people. Of course, as I have said before on a number of occasions, those people would probably not be happy about pro-cure autistics serving on the boards or in positions of power.

Later that evening Adam and I attended a reception for Autism Asperger Publishing Company headed by Keith and Brenda Myles. I met Brenda and told her that I was skeptical of her anectodal claims that autism in females had been underreported. She claimed that she had a journal article coming out soon which would show empirical evidence of this. She invited me to read the article and send her comments. I will be interested in this, because, as far as I know, there is nothing in the peer reviewed literature that substantiates this claim made by some female neurodiversity adherents.

At this event I also got to see Valerie Paradiz and her son, Eli Wapner again after a year hiatus. Valerie has a book in print about her son called Elijah's cup. I did not read this whole book but from what I know about it, I probably would not care much for it as it seems to glorify Autism Network International and the rest of the neurodiversity movement. Valerie is now on the board of directors of ASA. She is another successful person, a college professor in New York, who claims to have somehow discovered that she has autism after her son's diagnosis. This sort of thing bothers me because I feel it trivializes the great difficulties I have had in my life because of this disability which I consider to be a great affliction. So, if you include both Stephen Shore and Valerie as persons with autism, ASA has two spectrum members on their board of directors, so maybe this will make those people who complain about autism speaks happy. I suspect that most of the problems the vast majority of autistics face day to day are really an abstraction for Valerie, both because of her and the fact her son is tremendously high functioning in spite of having Asperger's syndrome.

The saddest part of the evening at Keith and Brenda's party was seeing Sue Moreno who publishes the MAAP newsletter and has published some of my writings. She has also published the writings of another like minded autistic named Marla Comm, who, like me, and unlike the neurodiversity crowd, really hates her autism and is tremendouly unhappy. Marla would send me email sporadically and we would exchange pleasant emails. I had not heard from Marla for a while and inquired about her with Sue. Sue then told me the very devastating news that Marla had passed away from having a very aggressive form of breast cancer, which had killed her very rapidly. I wrote about my sadness due to Marla's untimely demise in my previous post. I put on a happy face at the party and tried to have a good time in spite of this tragic news. After the party, Adam took me back home in his car. Due to his autism, he had a rather hard time finding the Gaylord Palms, the hotel where I was staying as well as where the conference was being held. Finally we managed to find it.

The next day I went to one of the more interesting lectures which was given by Dr. Katherine Rice of the CDC as well as two of her colleagues whose names i don't remember. She is the person who wrote the CDC report last year, reporting a prevalence find of 1/150 individuals with autism among 8 year old children in various metropolitan areas of the United States. After the lecture I asked Dr. Rice about what Bryan Jepson had said the previous day, asking her if there were studies that could possibly locate autistic adults at the same rates as children. Then the question of environmental factors leading to an increase in autism rates could be ruled out. She said that other than the Baird study done in South Dakota, there were really no such studies and they would be hard to do, because most of the 8 year old children presented in special education schools and clinical settings where most adults would not present. She said that she might be interested in trying to find a population like this if funding could be done. I asked her about my own theories about a temporal relationship between changes in special education legislation and increases in autism prevalence. She said that this was one thing to consider but one of the problems with this was that the autism rates would have plateued but they did not plateau after the special ed legislation was enacted. Then I asked about various environmental considerations and whether or not the higher rate in New Jersey could be attributed to environment or perhaps New Jersey having a high level of services. She repeated what I knew already from reading the article last year, that the speculation about whether people moved to New Jersey to obtain better services was not really the case as most of the autistic children that were surveyed in New Jersey had already been born there. As far as anything else being the cause of New Jersey's high prevelance rate or whether there was something in the environment mediating these increases in autism she gave what seemed to me the usual scientific hedge and shrug of the shoulders. She gave me her card with an email address and invited me to correspond with her.

Later that day I happened upon Lee Grossman who was the president of the Autism Society of America and talked with him for a while. I was still thinking about the question that Michelle Dawson posed to Autism Speaks about the 1.5 million autistic people in the United States and where that figure came from. He said he had not heard of Michelle but what might interest Michelle is that he claimed that it was Autism Society of America who originally came up with the 1.5 million figure. This figure was arrived at when the prevalence of autism was thought to be about 1/250 persons and based on what was thought to be the population of the U.S. at that time. Grossman admitted to me that this was a rough estimate and was not thought to be indicative of what the true number was. It was a number to be given to the CDC and other governmental organizations to debate and ponder. Then the other organizations like unlocking autism and autism speaks just borrowed the figure that was originally made by the autism society of america. That was interesting. I doubt it will satisfy Michelle's non-moribund curiosity.

Finally Saturday, the last day of the conference arrived, and what most of the attendees were awaiting with baited breath, Temple Grandin being the keynote speaker of the day.

Grandin's lecture was delivered in her usual monotonic style and her strange sounding voice. Some of the topics were new and interesting, others were just a rehash for those familiar with Grandin's writing. She again, talked about Einstein and Gates being autistic. She seemed to have changed her tune from stereotyping the majority of autistics to be visual thinkers as she is. She gave different types of thinkers, visual, nonverbal and the category that yours truly would most likely fall into, very verbal but bad at motor activities, drawing and the like. She also showed some slides of her scanned brain compared with a normal control. i don't remember what the exact findings were but it was a study done by Nancy Minshew and some other persons whose names I don't remember. She talked about her squeeze machine. People on the spectrum needing to pursue interests and studies to find jobs and plan for careers. She also talked about how manners were pored into people during her youth in the 1950s and how times had changed. She showed an interesting slide, showing the Lone Ranger and Tonto, entertainment icons from her youth with a slide of Brittany Spears to show how the behavior of media personalities had changed over the years. Another interesting thing I remember about her lecture was her not infrequent use of the politically incorrect term 'normal' that just about everyone else has now seemed to have abandoned.

I got to meet Grandin and shake hands with her. She was very unfriendly and perfunctory. I don't know if it was due to the fact that she knew who i was and remembered our phone conversation that took place about 16 years ago and the fact she might have known that I have written some unfavorable things about her in some of my writings. Also, American Normal, the book by Lawrence Osborne quotes me as saying some unfavorable things about her. Some of the things I did say, but Osborne was not entirely accurate in what he quoted me saying. She asked me about what I was doing now, and I had told her that I had worked sporadically as a medical transcriptionist for a number of years, but due to difficulties in the job and being fired a lot I had retired for the time being in my early 50s. Grandin's response was predictable. She said that medical transcription from what she had heard from at least a couple of other people with autism who had tried the job was not a good occupation for an autistic person. So much for being able to contradict some of Grandin's stereotypes as I thought I had before I left the profession. Steve Edelson interjected and told Temple that I had written an article entited Neurodiversity just say no and I told her that while I wished there could be a cure for autism that I realized she favored a middle ground. She wanted a cure or at least to do something about low functioning autistics, those who are mute and who engage in tantrums and self-mutilatory behaviors but she wanted to leave high functioning autism alone.

She then spent a bunch of time talking to my friend Adam, who recently finished college. He wanted some advice on how to best find a job and a suitable career and Grandin gave him some suggestions about getting in the back door of a place, like for example one job that Adam had applied for was an evidence collector in a forensics lab. Grandin suggested that he try to get his foot in the door by asking if he could volunteer, even if he had to clean glasses or something like that. She talked about Katzenberg who started out in the mailroom and then became a media mogul with Stephen Spielberg at dreamworks.

It was a fun conference, with good social interaction with some fun people, so for that reason I had a good time. Though due to expense and lack of interesting lectures I probably won't be returning next year when the conference is held in the Chicago area or the year after when it is held in Dallas. If I can ever afford it I might try to go to an IMFAR conference for my next autism "field trip". My friend Matthew Belmonte has thought it would be a good idea to have a panel of autistic people talking there with me on a panel. Also, I know my old pal Michelle Dawson goes to that one. I might run into her there. Now that would be interesting.


concerned heart said...

Thank you for your report from ASA 2008. I was shocked to hear about Marla Comm. Do you think that a great deal of non-familial autism comes from having had an older that 32 father or a mother who had an older father at her conception? I think there is a connection.

Thanks again for describing your experience at the ASA.


jonathan said...

yes, concerned heart, I think there may be a connection, though not sure why you are asking me this because you seem more knowledgeable than i am. I am pretty sure you are familiar with the study from israel showing a relationship between increased paternal age and likelihood of having an autistic child as well as the work of Jonathan Sebat and Michael Wigler that shows the de novo mutations that can occur at that instance.

I was also shocked to hear about Marla's untimely demise, but her life was very difficult and i could sense her suffering in her emails to me and I suspect there was some psychological overlay that played a role in her death.

Anonymous said...

Just to let you and other readers know, I didn't really get lost finding the Gaylord hotel while Jonathan and I were in my car.

What happened was that when I programmed the GPS to take us back to the hotel, Jonathan wasn't sure if we were going back the same way we came from. Although we may have travelled a slightly different direction on the way back to the hotel from the reception, we did eventually find the hotel. However, right where I was supposed to make the left turn into the entrance, I just barely made the stop while Jonathan was telling me to turn there a couple times repeatedly as I was looking at the navigator and reassuring I had stopped at the correct intersection to make the turn.

I will admit I got a bit confused as we were nearing the area full of houses where the reception was taking place (in one of the houses) because the GPS screwed us up a bit and had to alter the route as we did originally make the right turn (we turned out of the neighborhood, made a U-Turn and decided to turn back into the same area).

Yes, I do get confused at times while driving. The truth is that without my GPS navigator, we never would have made it to the reception (even if we used MapQuest or some other form of list of directions). I do struggle to find places while I'm driving as a result of my disability.

Anonymous said...
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Anonymous said...

Part of the reason I struggled to drive the entire way back to the hotel without slowing down was due to multitasking between looking at the navigator, driving, talking, etc...

This is part of my disability (NT's multitask, too, with these sorts of things so I DIDN'T say it's ALL because of my disability), yet I find it ridiculous when people from neurodiversity admit they have problems in this area but still deny a cure. How many 23-year-olds do you know who use the type of gadget I own even when driving around in the area they grew up in?

jonathan said...

thanks for setting the record straight jedi, and thanks for your comments about neurodiversity