Monday, August 11, 2008

Have Autism Will Travel: The Sad Saga of David Miedzianik

About 18 years ago, I was absolutely intrigued to read a column in the Advocate, the ASA's newsletter by Temple Grandin describing an autistic man named David Miedzianik who had written a published autobiography. Up until that time, I had never heard of anyone besides Temple herself who had written an autobiography or memoir. I had already read Temple's book, but it did not completely resonate with me. Part of the reason being our different genders. I was interested in the types of problems an autistic male had, particularly the problems with celibacy that seem to befall so many of us.

Grandin gave David's address and said that he was interested in hearing from readers. I wrote him, telling him I was another male on the spectrum and I was interested in obtaining his autobiography and reading it. He wrote me back telling me where in England I could get it and it would cost about 7 or 8 pounds (about 10 or 11 dollars). I was not sure how to send away for his book on an international basis. He included a phone number and I phoned him. We talked. He had a strange accent and manner of speaking but I was able to understand him. He agreed to send me his book and I sent him twenty dollars through the mail. He sent me the autobiography along with a long poem he had written entitled "I hope some Lass Will Want Me After Reading This" As soon as I had read the title of his poem I knew I had found a kindred spirit!

I read the introduction by Elizabeth Newsome, the university of Nottingham professor who had asked David to write the book. Written in about 1986 or 1987 she commented that as far as she knew David's book was the only one of its kind other than Temple Grandin's book which had been written with the help of an assistant writer. David's book was written entirely by himself. When David first submitted it to Dr. Newsome he asked her to correct it. Except for some minor punctuation and adding a few paragraphs she did not find it necessary to do so. Also, Dr. Newsome commented on what I thought was the germane fact that David was a member of the majority gender among those on the spectrum and cited the figure of as high as a 10:1 ratio of males to females in the higher functioning autism groups.

When I first started reading David's book it did not interest me greatly. It was just minutae about David's relatives and did not seem germane to anything particular in my life. After dragging for a bit the book started to hit home. David talked about taking piano lessons and having to stop due to poor coordination. This hit home with me because of my own motor coordination problems. He also wrote about bullying he experienced in school. He described a ritual that occurred in British schools in the 1960s called the first year clip where older boys would hit younger boys about the ears and he thought he got it more than anyone.

He also talks about how he would get dizzy in movie theatres and this lead to his having to go to mental hospitals at various times during his life. David also talked about being fired from various jobs. The longest he had one job was for six weeks stacking pallets in a bakery.

Most compelling of all was David's description of the constant rejection he received from women. This is a subject that is rarely talked about in autism circles, though I suspect it is a very common problem among adult autistic males. As far as I know, David and myself are the only ones on the spectrum who have written about this subject. If there are others I would certainly be interested in knowing about them.

He writes about a nurse he met on a political march whom he was interested in but the interested was unrequited. He would put ads in singles magazines and then the girls would write back and ask him what job he had. They would find out he was unemployed and that would end his prospects. He writes about a girl named Amanda (not Baggs) whom he is attracted to. She makes it plain she has no romantic interest in him. David sums up his book:

Living is more or less a constant bore. If it were not for the writing I think I would have
Ended it all but the writing has given me reason to carry on.

David goes on to write about a couple of suicide attempts. First he takes an overdose of medications he was prescribed to control his behavior, but they only made him very tired. Another time he drank a bottle of Fairy Liquid (this British dishwashing soap) but only made him sick and did not kill him.

I would talk on the phone with David and he would sometimes repeat himself "when are you going to get us to America". I would get excited that David wrote this autobiography and told him that he was the only autistic male in the world who had written about his life's experiences and that he should be famous and an important person. (This was at least a couple years prior to Tom Mckean's book coming out, Sean Barron's and several years before Steve Shore wrote his book). I thought it unfair Grandin got so much attention and he got nothing. Uta Frith wrote both about Temple and David in her book Autism: Explaining the Enigma. She gave Temple's full name and cited her book as a reference in the bibliography. She did not give David's last name and did not cite his book in the bibliography. "All my life I've gotten the dirty end of the stick" David would reply when I pointed this out to him.

I wanted to help David and I suggested that he write to Bernard Rimland and tell him about himself. David wrote to Rimland and the ARI and he just got a form letter and was sent some vitamins and magnesium supplements. I then suggested that David write to Oliver Sacks. David took my suggestion and wrote to Sacks' who responded by saying that David's poetry showed strong emotion but did not take an interest in David. I published a positive review of David's book in "The Momentum" which was the newsletter of the Los Angeles chapter of the ASA. After this whenever I talked to him on the phone he would ask, "Can you get us some write-ups?" and would say this over and over again.

At one point it seemed that David had finally gotten a break as a producer of British plays had taken an interest in turning his autobiography into a London stage play. David was excited because people came from all over the world for London theatre.

Eventually David would correct me when I went on perseverating about the fact that he and Grandin were the only persons in the world to have written an autobiography. He told me about someone I had never heard of named Donna Williams who had written an autistic autobiography. Actually the term could be changed to autiebiographies. I think it was Larry Arnold who first started using this term, which I ended up using too, many years later. Donna had been one of the numerous persons with autism, including myself, who had read about David in various autism newsletters in the days before the internet. She had also accepted David's invitation to correspond with him. I told David that I felt he could still take solace in the fact that he was still the only male autiebiographer.

In April of 1992 I took a trip to England in part to visit David. After a few days in London I took a three-hour train ride on British railway from London to Sheffield in South Yorkshire, England. David lived in Rotherham which was very close to Sheffield. I was met by David and his friend of the family Marjorie who was in her late 70s. I would stay with Marjorie and her husband. David and his mum could not put me up because she was very ill from Parkinson's disease. David shook my hand tentatively. He seemed shy about meeting me at first and then showed me the outline of the tentative stageplay that was in the works based on his life. David showed me his copy of Donna's book, Nobody Nowhere, which had not yet been published in the United States. David gave me the book and told me I could read it as he had already read it and was not any longer interested in having it. This meant I would be getting a jump on most of the American reading population and would be able to read Nobody Nowhere before most of them did.

David had also taped a British national television program featuring Donna. He played it and we both watched with interest. I looked over at David who sat there stoically watching it. I could see the pain on his face as his aspirations to get notoriety from his book had again been trumped by another.

I was interested to note that David made similar stimmy motions to myself with hand flapping and rocking. I was between jobs at the time and intended to look for another job when I got back to the U.S. David would say, "there's a job for you" as soon as we would pass a construction site. Sometimes he would pick his nose and say, "stinkinman and robin" over and over. Another repetitive and compulsive phrase that he would say was, "take your autistic tablets".

Now that David had met me and he wanted to get out of the house due to his mother being so sick, David asked me if he could visit me in the U.S. for about a month. This seemed a long time and i was reluctant, but i finally said yes. I was a little concerned about David's behavior but felt it would be okay.

My friend, Jerry Newport, who also had an autistic spectrum disorder and I had met at various autism meetings in Los Angeles came with me to pick David up from the airport. This would make it easier for me to get out of the car and go into the terminal and find David while Jerry would drive my car around the terminal. Jerry had read David's book and was also interested in meeting this VIP from England. David would sleep on my couch. David decided to call Temple Grandin now that he was in the U.S. He told me that sometimes she was busy and would not return his phone calls. The phone rang and I answered it. Temple was at the other end of the line asking for David. Temple and I spoke briefly but then I put David on the line and he talked with her also. I suspected that normally she might not return the call, but she was surprised David was in the U.S. and decided to call.

I told David that while he was in the United States I would do what I could to get publicity for his writings. Jerry knew a reporter from a local Long Beach newspaper. This reporter phoned and was interested in talking with David. David was normally very slow moving due to being placed on Haldol to control his behavior. However, I was startled at how fast David moved when I told him a reporter was at the other end of the line to talk with him. The reporter asked David a few questions and hung up. We never heard back from him, apparently he had lost interest. I also took David to some lectures and meetings that the local Los Angeles chapter of the autism society offered. David sold a couple of the books that he had brought with him.

I was wondering if maybe Eric Courchesne could do something to help David. I had been a research subject in a few of the studies that Courchesne's lab had done. They were in San Diego, a two hour drive from Los Angeles. I also thought David might be interested in seeing what San Diego, a popular Southern California tourist attraction was like. Courchesne was a well-known autism researcher and possibly influential in the field of autism and might be able to drum up some publicity for David.

I phoned the lab and talked to Jean Townsend, one of Courchesne's associates at the time, and she said we could come visit her in the lab. We drove the two hours down to the lab and met Jean. She had heard of Elizabeth Newsome and was interested in David's book and we gave a copy of one of his books to the lab.

David then met Courchesne and I explained to him about David being the only autistic male in the world to have written a memoir of any kind. Alan Lincoln, who also worked with Courchesne at the time, did a short research project with both of us as subjects. We also had a videotaped interview.

I knew that now was as good a time as any to broach the subject of helping David with Dr. Courchesne. Courchesne replied, "There are some people coming over from Japan who are interested in autism and I will tell them about the book when they arrive." Strike 3 or maybe 4 or 5! It now seemed futile to try to do anything else further to help publicize David's book.
After David got back from England, he had another setback. The stageplay fell through and it seemed the producer had turned out to be more of a wannabe than a legitimate producer in the world of London theatre. David had travelled to London numerous times at his own expense to meet with this man to assist in the development of the play, so this had been a big disappointment. David's mother also died at this time.

After this, David would travel constantly, staying with our mutual friend Kathy Lissner-Grant who lived in Denver and who had also taken an interest in him and would put him up annually. When she got tired of putting him up, he ended up staying in a hostel. He also had an aunt in Canada whom he would sometimes stay with. He had a terrible time in England with constant problems with neighbors and social workers being meddlesome now that his mother was deceased, thinking David incapable of looking after his own affairs. On occasions they would even go as far as recommending some sort of institutionalized living arrangement for David such as the British equivalent of a group home. It seemed that his motto should have been have autism will travel.

About 8 years ago, David came and visited me again and stayed for three and a half weeks. This was the last time I saw him in person. David had started getting a bit more publicity. He had a mention in Tony Attwood's book which was a huge commercial success as an Asperger's book. He had also been written about in Francesca Happe's and Uta Frith's book Autism and Asperger Syndrome. He was still unhappy and not really satisfied with the way his writings were going and not able to sell much of them still in spite of the slightly increased publicity. David's frustration about his lack of success with women continued. He even went so far as to write a post on a usenet newsgroup demanding a girlfriend.

David would ask Kathy, his aunt and myself to put him up. But we knew he would just want to stay in our homes constantly if we acquiesced, so David sort of wore out his welcome with all of us, but he would still travel to the U.S. and stay in either a hostel or hotel. Eventually the Immigration service in the U.S. found out that David had stayed many more days in the U.S. than his visa would allow and he was not allowed entry into the U.S. and transported back to England the last time he tried to come to this country. He tried to get his visa renewed but to no avail. As far as I know he still travels to London and sometimes takes a ferry to France to avoid all of the problems he has in Rotherham with his social workers and neighbors.

He would also advertise for a girlfriend on the internet after the drastic step of demanding one on the usenet did not help him. David seems to fit the autistic stereotype of lacking theory of mind. He fails to understand the point of view of others. He does not understand why people would tire of letting him stay in their homes. He does not understand why advertising for a girlfriend on a web page or demanding a girlfriend in the usenet newsgroup will not yield him results.

Though David was a trendsetter as the second person to publish an "autiebiography" of any sort and the first male to do so, many others have now filled this void. Those include Tom Mckean Stephen Shore, Sean Barron, Daniel Tammet and others. David still lives in complete obscurity a forgotten landmark on the autism map. Most of the published memoirs of autistic people show success stories. Could it be that people don't want to know what the true prognosis is for most autistics rather than these few exceptions to the rule? David himself summed it up nicely in a usenet post:

The reason I have done badly with the stuff I write is that I give a very good picture of what it is like to be autistic. Temple Grandin sells so many books because she is hinting that autistic people can grow up to be a Ph.D. I am hinting that autistic people may end up in a Sorry mess and people do not like that. Temple Grandin's books are true for her, but not for the vast majority of people with autism. My poems really give a much more accurate picture of what being an autistic adult is like. Her stuff gives the idea that things are OK with autistic people when they're not. This is dangerous as people read this stuff and think that things are Ok and autistic kids will grow up to be Ph.D.'s. Then the next thing is that nothing gets done for us and we have to suffer all the more. This is very dangerous stuff, these books, and they do no favors to people who are really suffering with autism and things end up not being done when they need to be done. In about ten years' time when people's kids are not Ph.D's people will be asking for their money back from this stuff. Well, maybe not, but you can see what I mean.


Larry Arnold PhD FRSA said...

I certainly recall David's postings on usenet, as I recall yours.

Unfortunately not everything sells, and the reason why is the market.

Some time ago I thought I would have a go at the autiebiography genre myself, by writing a much expanded version of what is available on my website buoyed up by the fact that it had been featured in Barbara Jacob's "Loving Mr Spock"

I tried the mainstream publishers and I tried Jessica Kingsley. Jessica turned me down saying that she thought the market was over saturated at that time with autiebiographies. Well I am not so sure as she has published others since. I have to reckon that either my effort was a lousy piece of writing or that I did not fit the particularly stereotype du jour.

A little later I approached her again to see if she could publish my video "which ever way"

Her excuse this time, that she had no knowledge of the video market. However that is no longer the case as her company does produce video.

It just happens, and I do know this from studying the market, that my piece is too Iconoclastic and maybe too academic for mass demand. The other video which I have been producing for Paul Smith for some time as a self publishing enterprise, is straightforward "self narrating zoo" and continues to be in demand.

I am certainly not going to become famous as either a writer or a video producer.

If I do have any place these days as a minor autism celeb, it is because of my connection with the NAS which involved me in going out and doing something to change an organisation and if it had not been for the internet and the ability to be sponsored by such people as Mike Stanton that would not have happened either.

jonathan said...

Hi larry, good to see you, you make me nostalgic for the days when we used to lock horns on or whatever that group was. True, it is tough to sell stuff. However, David had his autobiography out before any other person in autismdom with the exception of temple grandin, His work came out more than a decade before you even decided you had asperger's and started writing about the country in the blind.

He was probably the only autistic male in the world to have any sort of autobiography out, i thought that made him rather unique, but i guess it still does not mean it will sell so you might have a point.

Maybe you should have used your old H.G. Welles analogy to promote your stuff, maybe it would have been a better gimmick.

SM69 said...

Good post- very interesting- will think about this and get back to you on this. Only learned about this person today!

Yuval said...

When did David write that last bit? I'm sure he could have never predicted Neurotribes, Wrong Planet, and the mass delusion that Autistics are geniuses in secret.

jonathan said...

think it was about 8 or 9 years ago, not sure, no he had no way of predicting that stuff.

hudu said...

I grew up near David. In his hometown of Rotherham. Just to add that I have bumped into him on every separate visit i have made to london ( a city of 10 million people) in the last 5 years.

There's a message in this somewhere...and I'm not yet sure what it is.

But it brought me to this old post tonight and I thought I would add that he is still very much David - and looks healthier and even more boyaunt than our last random passing about a year previous.

I'm looking to correspond with anyone who may like to exchange experiences of him. Not sure why yet... ;)