It was just about a year ago that we finished a discussion of Paul Collins' delightful Sixpence House, about his family's experiences in Hay-on-Wye, an antiquarian book community on the border of England and Wales. Towards the end of our discussion we learned that his two-year-old son Morgan was diagnosed as autistic shortly after the family returned to the United States. Not Even Wrong continues the family's story and provides historical perspective on autism as well.

Most of us probably know someone who is autistic or autistic-like, or we know someone who knows someone who is. The increase in the number of those so diagnosed is exponential. Ten years ago pediatrics estimated an autism rate of one per 2500 in the US. Today the rate is estimated at one in 166.

This is not a textbook case, nor does it read like one. It's the story of one little boy and his very loving family. It reads easily. It flows. Please let us know if you would like to join our discussion of this book -- we need at least a quorum of three. In the meantime, follow the link to read Morgan's first evaluation (in the heading.) It will break your heart.

Pedlin I would like to participate in this discussion. I have been having trouble with my eyes and have not been able to read as I like to do but I will try to read this book and participate.

Joan Grimes

Joan, welcome. I'm so glad you want to participate in this discussion, but am sorry you are having troubles with your eyes. I do hope the eye problem is temporary and will soon be corrected.

In my high school librarian days there were always a few students each year who would choose Autism as a subject for their "junior" papers. How we all could have used a book like Not Even Wrong, for Morgan's story, the historical aspects, and the wonderful chapter notes and bibliographies that Collins includes.

Thanks for the welcome Pedlin. I have an autistic grandson. He has a very high IQ but his other problems have been a real trial to his parents and brothers and sisters. I am always interested in trying to find out more about autism.

Thanks for your comments about my eyes. I have dry eye syndrome which I understand is very common but it is also very painful. It requires that I rest my eyes often.

Joan Grimes

Pedln - I'd like to be a part of this discussion. I have an autistic granddaughter, so I'm familiar with characteristics, problems, etc. The book, "Adventures in Autism", looks to be very good, and I definitely plan to buy it and read it.

Marilyne, welcome. I'm so glad you will be joining us. And I think having the perspective of those of you who are close to someone autistic will help the rest of us understand it better.

Horselover, I'm so glad you plan to join this discussion. Yes, having met the Collins family and Morgan in Sixpence House one wants to follow their story.

Like you, I think that the parents of special needs children have much to cope with. Like most parents, they have hopes and dreams for their children and want only the best for them. Our local paper has had several articles about autistic children over the past few years and it seems that one of the biggest hurdles is getting the right educational program for each child. It has been a battle for many parents.

Temple Grandin has been one of the most articulate and famous autistic people living today. There is still a possibility to hear an interview of her on radio station WNYC on the Leonard Lopate show archives. Google can direct you to the station on the web. The original interview was yesterday, January 25, 2005. Oliver Sacks, the neurologist, has written about her also in his books.

Jan, thank you for alerting us to Temple Grandin. I took your advice and Googled her name. While I did not find the radio interviews you spoke, I did find many articles either by or about her. If I were not leaving town early tomorrow morning, I would pursue further, but unfortunately that will have to wait until I return.

I think the information provided by posters like you will really enhance the discussion of Collins' book. I look forward to both, and hope that you will join us.

I really have not much to contribute as I have no confirmed contact with autism. I have a vague suspicion that I may have a touch of autism myself, as most of my thinking is visual and I am relatively unsocial and have a strong affinity for animals.

Pedlin, After talking to you at the beach and reading the excerpt, I will try and get the book and participate in the discussion. Say Hi to Bonnie for me. I did love meeting both of you.

Stephanie, super, I'm so glad you will be joining us.

And Jan, you are already contributing and I'm grateful. Not all of us have had much contact with autism, but I think we'll be hearing more and more about it. I do hope you'll stay with us and tell us more about Temple Grandin. That's interesting that you think you may lean towards autism yourself. I recently read an article about Asperger's Syndrome, which is a form of autism, and adults, hearing the symptoms displayed by children, were saying, "That fits me to a 't'."

The book is fascinating. When my friend Bonnie and I were going to the SN gathering at the beach, we stopped for the night in Tennessee. During dinner we were chatting about books and I was telling her about Not Even Wrong. (As school librarians we had both worked with the same autistic student.) There was one other couple in the dining room and when they got up to leave the woman came over to us and said, "Excuse me for eavesdropping, but what was the name of that book? We have an autistic grandchild and I want to tell my daughter about it." Of course I had to tell her about SeniorNet too, and would have given her one of the SN bookmarks I carry in my overnight case, but it was back at the motel.

Ordered the book, so know I will have it here and read it by March 1.. We will be going down to the Keys in our coach next week for some r and r in the sun and water.. My cold is simply awful, but am slowly getting better. I suspect that many people wonder about the Augberger children. I know that I knew people who fit the category.

There is a scienc news source http://www.sciencedaily.com/ that has an archive search box. If you write "autism" in the box many articles on autism will become available.

Book arrived. Will take it with us on the trip.

Jan, thanks for the very useful link. It does offer a lot of information, with most articles from universities, hospitals and other research units. Very good.

In yesterday's mail I received a flyer about a bridge tournament to support Tuberous Sclerosis Complex (TSC), which is the second largest identifiable cause of autism. While scanning the Science Daily site I noticed they had an article about TSC and autism.

The BBC has a program called "Health Matters". Next week there will be a program on autism. The BBC is available in the USA through National Public Radio which can be obtained through many local stations. In New York City WNYC broadcasts the BBC.

Something interesting here.

http://www.sciencedaily.com/releases/2005/02/050213135856.htm

That's a very interesting article, Jan, about one fraternal twin developing autism and the other not. Of course the main focus of the article was that because of the mother's meticulous records from birth on it was possible to note the onset of symptoms much earlier than previously suspected.

I'm so glad you have introduced us to this site and will ask our technical people if they can provide a page for links.

There is a new search engine at

http://ptech.wsj.com/archive/ptech-20050127.html

It does not give links as other engines do. It gives actual information and if the word "autism" is entered for search a good deal of material is offered.

Pedln, Joan is correct about the Today Show on Monday, but the segment on Autism will go on all week. I don't know which time slot it will be on, but it should be a great start to your discussion.

I have not been able to find the book, but will try to order it. It was great seeing you at the beach. I said that I would help, and will do my best.

Sandy

I think Paul Collins was right in Sixpence House to show us Morgan as the joy that he is so we would first see him as a child, and without labels or qualifiers.

When I think of Morgan I always see him as a tolddler tap dancing on the metal grate.

I liked this publisher's quote about Not Even Wrong: "Throughout, the book is a meditation on what is normal and what is human." Lots of surprises about autism, with connections to well-known people and what it is, but the heart-felt yet unsentimental meditation touches me beyond words.

Marvelle

How great to see you all here -- Joan, Jan, Sandy and Marvelle. Thanks so much for the input about NBC and autism, Joan and Sandy. I'm just going to set the tape from 7am to 10, as I don't want to miss it. Our local paper doesn't have a daily TV guide, but Zap-it online does, and shows that the Today show will feature Dan Marino and NBC exec Wright discussing their families' experiences with autism.

Jan, yes, the site described in Mossberg's column, http://www.answers.com is really good about definitions and the sidebars on its pages do offers some other links.

Marvelle, what a thoughtful comment about seeing Morgan as the joy he is. I think we are going to find that Collins' book has a lot to teach us about how we look at others.

Sandy, I'm so glad I had a chance to be with you at the beach, and hope you will join us here. We will welcome your special ed expertise.

I'm looking forward to seeing you all here March 1 when we begin our discussion of Not Even Wrong. In the meantime, please feel free to share other comments and links here. I hope you all have a chance to catch one of the NBC shows.

Traude, thank you so much for the reference to Mark Haddon's book. I have not read it, but understand that it has been well received, although at first a sleeper, as you have said. I noticed that it is on the IMPAC Dublic Award List (in First Page Cafe), for either 2004 or 2005. We will be interested to hear how it was received by your "live" group.

I do hope you will be able to join in our discussion of Not Even Wrong.

Back from our journeys in the coach. Read the book while I was gone and will reread it again before March 1st.. Must confess that I struggled with the book. I have read a lot about autism, etc and his definitions bothered me a good deal.

Stephanie, glad you read the book. It will be interesting to hear your reactions and to see if others agree or disagree.

Autism has been all over our local TV here also. Every news broadcast has something about Autism.

Thanks for that information on the Newsweek cover Ginny. I had not seen it. I will have to try to get it.

As I have said before I have a grandson with Asbergers Syndrome which is a form of autism.

Joan Grimes

Ginny, thanks so much for the tipoff about the Newsweek article. I bought the magazine, but the article is also available to all online. A link to it should be up in the heading soon.

Because of the timeliness of this topic we are changing our format for this discussion. We will still discuss the book (see early schedule above), but we will also open the discussion to all who are interested in this topic, and will welcome their ideas and input.

There was a report in the NYTimes last week, maybe it came from Newsweek, about new discoveries in the brains of autistics. Something really concrete which could help in diagnosis/treatment. I'll look up the reference and post it.

I read the article on the difference in brains.. Fascinating, although I suspect not much help to diagnose

Jackie and Traude, many thanks for the article information. I have asked Pat to add the NYT links to the More Autism Links page and the Newsweek link is in the heading.

I found this thread only today. My only grandson is autistic. Yesterday, by accident, I found on the TV news that now one of 166 percent of children are autistic. I am totally mixed up. Are diagnostics more advanced, or is there something going around to raise the number?

My autistic granddaughter, Claire, is now 14 years old, so I've had that many years to try to figure out the strange enigma of autism. I could write volumes about Claire, but for now, I'll just say that autism is probably the most puzzling, frustrating and heartbreaking of all neurological illnesses or syndromes - followed closely by Asperger's Syndrome. (I also have a family member who suffers from that, which I won't go into at this time.)

I've read, "Not Even Wrong", and have mixed feelings about it. There are lots of things about the book that I didn't like, and that I don't think apply to the average family with an autistic child, or to the afflicted child him/herself. I did enjoy, "The Dog in the Nightime Incident", and felt like it was probably an accurate look inside the mind or thinking processes of an autistic adolescent.

The TV news features over this past week have been enlightening to viewers who are just learning about autism. But for those of us who have been living with it for many years, it was just a review of the same old stuff. There was nothing new. Meaning: no breakthroughs and no answers to the Big Question, which is ... WHY?

I havn't read the Newsweek article yet, so it may offer more of an indepth look. I'll have more to say about the Collins book, after the discussion starts on Tuesday.

Maryline,, Aha someone who I suspect agrees with me about the book. I was once involved in a study 40 years ago about autism and various other childhood problems. Our older son did not speak until 3 and a half and we were asked to become involved in the testing period.. Very interesting, although I am sure out of date by now. Still I did get to observe several children who were diagnosed autistic back then.

hegeso, welcome, and thank you for coming by. I hope you will join our discussion which opens Tuesday. The questions you ask are questions being asked by many around the world.

Marilyne and Stephanie, it will be interesting to hear your comments about the book, which no doubt has raised other questions. Please feel free to bring them to the discussion. We have put a partial schedule in the heading and will try not to go beyond that at first -- but that can be changed if all book participants agree.

I'd like to join this discussion, too, please. My older grandson has Aspergers Syndrome and though he is very high functioning he does have difficulty in certain areas. When he is with family it isn't as evident. In fact, when we visited them at Thanksgiving I told my DIL that I just can't see it in him, he seems like a normal teenage boy to me. She said that I would if I could see him in a social situation. He has already worked his way through a fairly long bout of agoraphobia that apparently was in some part connected to the autism---though I am unclear as to just how they fit together----and seems to have learned to deal with that. Maybe I can learn more from reading and discussing this book with all of you. We love him so dearly and the worst thing that I personally have to deal with is the thought that he will carry this label around his neck like an albatross all the rest of his life. In spite of our beginning to have a better understanding of this condition I think the word Autistic is still a "stigmatizing" one in our society.

I know these are some of the things we will be discussing and I look forward to that.

My Grandson , 6 years old now was diagnosed PDD (Pervasive Developmental Disorder) when he was 18 months old. We lived in NJ then and he received ABA (Applied Behavioral Analysis) for over a year. Thank Heavens he now seems normal although I'm sure he will always have some issues, but then don't we all. NJ has a very strong network of support. I know COSAC ( Center of Outreach and Services for the Autism Community) saved my sanity at the time. I wish florida had this kind of support group. I firmly believe it was the early intervention that helped him . It is expensive though, almost 40,000 for a year of therapy , but worth every penny of it. I look forward to hearing all your views as this is a very serious problem.

A very helpful book about Autism is "Let Me Hear Your Voice" by Catherine Maurice. It lets you know that there is light at the end of the tunnel. I found it very helpful at the time of diagnoses of my Grandson. Also NightLine (Ted Koppel) had a show, I have the video, that can help explain Autism to family and friends. It was on 3/09/01 TO FIND THE WORDS - NO l0309-01 Don't know if it is still available.

Phyll and Margaret, I'd like to welcome you both and hope that you will continue to join us as we proceed with our "mixed" discussion of Not Even Wrong and current thought and dialog about autism. This is a new type of discussion for SeniorNet, at least I think it is, and I'm looking forward to it. Everyone who joins us has something worth contributing and we all have a wonderful chance to learn. Glad you're here.

Had to post this as ABC Nightline just reran their program about Autism from 2001, the original and an update on the two boys that were featured. I do hope some of you saw it.

Not even Wrong.. The first part of the book, I found a little confusing between Peter and Collins being involved in testing with his son. I also find myself distracted by the casual mentioning of the fact that Collins son always sleeps in their bedroom, is 3 years old and still nurses and Collins seemingly regarding this as normal behavior. Peter sounds truly interesting, but am not quite sure I seem him as autistic.

Today we officially begin our discussion of both autism and Paul Collins' Not Even Wrong, welcoming all your comments. As most of you know, we don't always agree in our discussions, but we do respect what others have said.

What is autism? I've heard it referred to as a disease, a disability, but really don't know what to call it. One thing that has been brought out in the media is that it has increased tremendously -- what? -- 172% in the 1990's, compared to something like 16% increase in disabilities overall. The articles in the links above offer statistics. The big question is WHY? Why this increase, and not even the experts seem to know.

Stephanie, I was wondering how people felt about the format of the book, the jumping back and forth between Peter and Morgan. I did not find it confusing, but I tend to jump around anyway when reading non-fiction.

I've been thinking a lot about the Collins' family and what they must have gone through hearing Morgan's diagnosis -- as Collins' says, "We left home with a healthy toddler and returned with a disabled one." But about the family -- I think maybe a bit non-traditional, not conventional. They have been in a bit of upheaval -- they had moved from San Francisco to Wales (Sixpence House), and while in Wales were living for the most part in temporary housing. Now they have settled into an older home in Portland. For some reason I'm thinking they don't have all their furniture. They both work from home. It appears that neither drives -- they don't have a car, at any rate. A male friend is part-time nanny. All of this makes me think that they're not going to be particular about insisting Morgan sleep in his own room. As for the nursing, well again, they've been in the middle of moving around. I can remember putting off toilet-training of one of the kids because we were moving. I think that up until now the Collins' weren't too troubled by timetables, they haven't been part of a group of moms and dads and kids, comparing notes, etc.

Pedln, this is not the first time a book discussion has been opened for general discourse among those who have the book and those who don't. I have in mind the Good War discussion of Studs Terkel's book. Many Vets came into that discussion who did not have the book and made the discussion that much richer. I think you made a very good decision in this case too. Those who are familiar with the "condition" - "syndrome" will be able to help those of us who are reading the book- immensely.

My first question about the book - Had Paul Collins been doing the research on Peter the Wild Man before receiving Morgan's diagnosis? I can see the interest in Peter developing afterwards ...and then using the similarities to write this book. But it isn't clear to be whether Paul Collins had an earlier interest in Peter.

I think I see some similarities between Peter's condition and Morgan's, Stephanie - hough Peter had a much rockier start - with no early intervention. Maybe the similarities will become clearer when we talk about the early signs of Autism.

Hmm, I think in the very beginning of the book they were still in England. Cannot find the page, but somehow I thought I remembered him talking of going to where Peter was while in England and I really thought the interest in Peter corresponded to the problems with his son. I guess I remember all of the questionairs I filled out all those years ago for my oldest in the field study. All of the things I mentioned were considered warning signals for a disturbed child .. But then way back then, they tended to always blame the parents and upbringing..Much more nurture than nature, but I see that the pendulum has swung back to nature..

I had lost my book and was almost frantic to find it. I have misplaced everything I touch lately. However I had taken this book to my lawyer's office with me last week and had put some papers that I needed in it. So I have spent the last several days looking for the book. I just found it. I am so relieved. Now maybe I can think about the book and enter the discusion soon.

Joan Grimes

Yaay, Joan. I have reached the point where I've stopped getting upset when I lose something. I have developed a sense of humor, I guess you'd call it. Or better, as sense of curiosity about what silly place the item will turn up.

`By the way, I just finished reading the last few pages in Part I and my earlier question was answered.
Paul Collins'interest in Peter the Wild Boy began when he was reading those obscure books in Wales...when Morgan was two."Long before going to the doctor and Morgan's diagnosis - I had been chasing a silent boy through the even greater silence of centuries, when my own boy was in front of me all along. How could I not have seen it? Something drew me to Peter, something so obvious now that Stark barely mentions it in passing in this book: An early case of autism

JoanG, I'm glad you found your book -- and your important papers. We're looking forward to your input.

Joan P and Steph, it appears you've answered the questions about where Collins' first read about Peter. How ironic -- "(collins) chasing the silent boy. . . . when my own boy was in front of me. ."

I wonder if subconsciously he made a connection when he first met Peter, in Wales. On page 10 he says, "I first met Peter last year when we were living in Wales. . .Peter followed me. I moved a couple of times, watched my toddler grow, wrote a couple of books, but I couldn't quite get him out of my head and I didn't know why."

And we also find, through the efforts of Johann Blumenbach, that the reason Peter was left abandoned and alone was because his stepmother turned him out because he wouldn't speak. Like Morgan.

Autism -- how frustrating it must be for everyone involved. What do we know about it? From what I have read, there is not agreement on its cause. It's diagnosis appears difficult. Only recently have there been reports about infant diagnosis, while the one thing most experts agree on is that early intervention is very important. It is apparently underfunded, compared to other conditions, and, from what some of you have said, is very costly to treat.

I'll be out of town all day tomorrow, but should be back by early evening.

I suspect that Morgan is not quite as typical of autism as some others in nonfiction have been. I relate better to Noah.."A child called Noah".. His Dad has written two books by him. I just got the Newsweek article and read that and now am wondering if we are working on the disease of the week here. They have broadened the diagnosis of autism considerably lately. Peter was a fascinating child and adult. Such a mixture of calm and fury. His passion for the outside and natural foods is quite remarkable actually. Dont think that is a standard sign of autism however.

I have so much to say - don't know where to start! I'll try to keep it short (since I do tend to run on ... and on.)

One of the big myths regarding autism, is that most of these afflicted kids are savants, and have some sort of special super-talent in one specific area, such as music or mathematics. NOT TRUE! The vast majority of autistic children have normal IQ's, and only have the same amount of talent in different areas as a non-autistic child would have. The thing that makes it appear that they do, is that these kids tend to be very obsessive-compulsive, so they do lots of counting and arranging and memorizing. It helps them to keep their world in some sort of order. They aren't good at remembering faces that they don't see every day, so instead they pick out something else that helps them remember a person. In Claire's case, it was the color and make of car that a person drove. So she memorized EVERY car on the road, so she could tell one car from another. Then it became more like an obsession, and she wanted to talk about cars and make lists of brands, and look inside the hood at the engine, etc. This extreme focus lasted for about a year, and then faded.

It's been a month or more since I read the book, so I don't remember specific details, but seems to me that Morgan was reading at age three? That is pretty amazing, as was Dustin Hoffman's character in "Rainman". Remember he had incredible mathematical skills. However, I know that that's not the "norm" for autistics. Another thing that Morgan did that I know is VERY unusual, is that he liked to cuddle up to his parents, and was always leaning against them to get close. Claire, and most autistics, do not like to be touched at all. They will pull away if you try to hug them. When she was Morgan's age, she would bring me a book to read to her, but she would never sit on the couch next to me. She would stand beside me - just close enough to see the book.

Sorry this was too long. I didn't really comment as much on the book as I would like to. I had to return it to the library, but have my name on the waiting list again, so I should get it later this week.

Hi I have not read this book but have read many others on the subject. I treated Autistic children for ten years while living in Israel. It is a difficult and trying avenue of work, but also satisfying. At the time(the seventies)) there was a confusion of thought as to the reasons for this disorder. Luckily I had the luxury of working with the children for 5-7 years and all learned to talk to a greater or lesser degree.Also all learned to read. When I returned to the States I moved on to other types of children. However I keep up to date on the theories. I wil be glad to read the book and hear from others who know and live with this problem.

Stephanie, Marilyne, JoanP, and Judy -- your posts are all indeed very helpful, as Joan has pointed out, and they bring up so many questions and thoughts.

I've just been searching in the links above to find the term used by many professionals when discussing autism -- ASD, they call it, Autism Spectrum Disorder, they refer to it, and my understanding is that it encompasses different conditions and different levels. Judy, no doubt with your background and experience you could tell us a lot more about that.

Stephanie,I'm glad you mentioned the Josh Greenfeld books about his son Noah, A Child Called Noah, A Place for Noah, and A Client Called Noah. A very sad, almost hopeless situation. Noah was born in 1966, diagnosed autistic, as well as severely brain-damaged. The effects on the entire family were devastating and eventually he was institutionalized, where he is today. In the 1960's and 70's one didn't hear much about autism. Then in the 80's came the movie "Rainman." And that seemed to be it, until recently. Now it's like somebody opened a drawer and all this information has come spilling out. Surely much has changed since 1966.

Marilyne, thank you for sharing with us about your granddaughter Claire. I hope you will feel free to tell us more about her. What you said about the obsessive-compulsiveness and the extreme focus explained a lot. I remember one of the special needs students who would come into our school library. He was a walking index of the Rolling Stone Magazine. He could tell you which issues had an article about a particular rock star, or he would tell you what was in every issue -- I don't know for how many years. This from a boy who was in special classes, accompanied by a personal aide. Another child, from the neighborhood, was first called autistic-like, then later, simply autistic. He focussed on birth dates and would ask for your birthday, including year, and could immediately tell you on which day of the week you were born. Until you explained about Claire's focus on cars, I had always thought typical of all autists.

I wondered also, when Collins would talk about Morgan leaning into him, and I have this picture in my mind of Morgan, standing on a chair, leaning his shoulders into Dad, not looking at him, but still with a little smile of contentment. Not what I had previously been told about autistic children.

Back later, but I must eat breakfast

I too was puzzled by Morgan liking to cuddle. I remember that there was quite a theory about autistic children not able or willing to be touched..I also feel that Morgan is different. The children in the program I was in were simply not genius of any type. Very ordinary children, the common bond being they were 3 and did not talk..But that was a long time ago.

This book presents a lot of visual images. I see Morgan in the backyard, riding on the shoulders of Uncle Mark. Gee-up! Like any normal 2-year-old. And then there is Paul looking at Morgan, asleep in his car seat after the doctor visit, and wondering, "the way he's sleeping, is that abnormal? The sound he makes when he's happy?" And Morgan's happiness at the piano -- reminds me of my 2-year-old when we got our piano --"the prano coming today? I'm gonna prano it hard." As Joan mentioned earlier, what an emotional rollar coaster for Paul and Jennifer. It must be very difficult for them to accept that this well-loved child who does many things normal kids do, is not normal.

Had any of you heard before, of Peter, the wild boy from the Black Forest? I had not, although we had in our school library a book entitled The Wild Boy of Aveyron, who lived in France in the early 1800's, under the tutelege of Dr.Jean Gaspard-Itard. It seems that most of the people Peter encountered were concerned about his welfare, even though they tried to mold him into a "normal" boy. But, they thought they were doing the right thing, whether or not it was the wise thing to do. At least he was able to live out most of his adult years in relative peace without having to scrounge for food and hearth.

The collage on the cover to this book is intriguing and I have been trying to figure out the pieces. I think this first section describes at least one -- have you found it?

Judy S, we would like to hear more of your experiences working with autistic children in Israel, and perhaps you could also share with us the different theories about this condition.

This is an excerpt from one of the Newsweek articles above. It is by Suzanne Wright, wife of NBC/Newsweek executive Bob Wright, whose grandson was diagnosed with autism a year ago.

"The Wright family—just like every family in this situation—was left to assemble a team of specialists on its own. If you have a loved one with autism, you'll try anything that might help. The difference between us and the average family is that we didn't have to sell our house or take on a huge burden of debt to pay for treatment. And the costs can be staggering—well out of the reach of most people, even those with generous health-insurance coverage."

She touches on something that Margaret Burke mentioned earlier -- the costs of treating Autism Spectrum Disorder. From what Margaret said, it doesn't sound like things are equal all over. What one state has, another might not have. Which brings up something that has been bothering me. Back in the 1970's, I believe, the federal government passed a law regarding special education that said school districts had to provide a program that met the child's needs, and if they didn't, the parents could take the child elsewhere and the district would have to pay. I thought it was from age three on. Is this not happening now?

Yes the school districts must provide for the proper educational needs but it is a long struggle to get them to do so, often envolving lawsuits. There have been many such legal hassles in NJ but now I think the best places for children with autism is N J or Calif. Their public schools have the best to offer. But treatment ideally should begin before 3 years old. Children with learning disabilities are evaluated and given an IEP (individual education progran) Many parents move in to Brick, NJ as the school has a large autistic program that seems to be working very well. You have to remember that there are degrees of autism, from mild to very severe. The early warning signs are: toe walking, arm flapping, will not look you in the eye, will not respond to their name when called, large head, tantrums (cannot be comforted) obsession with spinning objects and does not like to be touched.

Aha ,, Margaret, I looked up my old notes from way back in 64 and wow.. The symptoms are listed just like that then.. How amazing.

Margaret - Of the early warning symptoms mentioned, my granddaughter fits into most of them, but not all. She did not and does not have a large head. I don't recall her having any kind of obsession with anything spinning? However, she was and still is, a hand flapper. Starting at around age 2, she would stand in the middle of any room and stare up at the light fixture, and flap her hands. This could go on for hours if you didn't stop her, which we always tried to do, early on. If she wasn't ready to stop, she would begin to scream and carry on, in tantrum fashion. When she was about 7, a new doctor at Stanford, explained that the flapping is a way to relieve stress and tension, and that she should be allowed to flap for a certain amount of time every day. Instead of insisting that she stop, we were told to tell her that her, "flapping time", was up for now, but that she could resume later if she wanted.

The resources in California are better now than they used to be, but they still leave lots to be desired. The public schools are required to have Special Ed programs that address the problems of all handicapped children, starting at age three. The problem is that most schools had all handicapped kids lumped together in one classroom. So there was every possible handicap - Downs Syndrome kids, as well as slow learners, wild uncontrollable kids, cerebral palsy, retarded, and a few other autistics. Although the teachers were patient and conscientious, there were just too many different problems to deal with any of them effectively.

However, that program has most likely been upgraded and changed in recent years, because the area where we live in California, Silicon Valley, has an "epidemic" of Autistic kids born in the past 15 years. Claire is now 14, so I don't think she benefited much in her early years of education. She is doing well now, however.

Also, my daughter and her husband did not have the money or the resources that Morgan's family has. Morgan has the advantage of both parents at home all the time, with one or the other working with him constantly. Plus, he has a reliable and trusted, "baby sitter", who takes over when the parents are exhausted. I also remember that the program that Morgan was attending, was a private school, with a one-on-one (child to teacher) ratio. The average family is not so fortunate as to be able to afford something like that - if it is even available.

I am interested in this discussion. Although the child in our family does not have autism and is in fact in the top 5% of the population for language and maturity. The child is 7 and has the mind of a 13yr old. However the child has another disorder and life is hard for the parents. The child does not sleep much. The parents have had to do a lot of their own research and learn ways of teaching coping skills to the child. Routine is best for this child and also emphasis on rewarding good behaviour. The child in our family can go from excessive noisy behaviour to excessively quiet behaviour. There is not enough help for parents of autistic kids and kids with other similar disorders. If you are not wealthy you have to be parent,counsellor and researcher to that child. Parents find it difficult enough in this day and age without coping with special needs children. I take my hat off to the parents of my grandchild and to all the other parents who in many cases are doing groundbreaking work with their children.

We were very fortunate that a very good friend of my Daughter-in-Law's gave her a book on Autism and the first chapter was the list of early signs. My Grandson fit almost every one, still the Doctors said to wait until he was 2 years old to have him tested. We did research on the internet and decided on the Applied Behavior Analysis therapy. It is very expensive, hard and time consuming. My Grandson was 18 months old when he started and it lasted well over a year. He was top priority with his parents and he is now 6 years old and in regular school, 1 st grade. The schools try to put children in to their existing programs and that is why support groups are so important for parents, they can band together and sue the schools if need be, to get the help they need. We were able to manage ourselves but most families do not have the resources. These children need constant attention and must be taught everything that we take for granted. My grandson had to be taught how to play. He would turn a toy car upside down and sit for hours just spinning the wheels and was fasinated with ceiling fans. He had ABA 30 hours every week and then my son was constantly with him reinforcing the program. Most Pediatricans do not know what to look for although now they should have a check list of sighns and his Doctor has said he refers children much earlier now to a neurologist rather then wait until a child is 3 years old. They lived in N J near Douglas College which is a Autism Center and had good teachers who came to the house every day.

Margaret and Marilyne, thanks so much for your information about the public school programs for autistic children. It sounds like much of what is available depends upon where one lives beecause school districts don't all offer the same quality of programs.

I was interested in the early warning signs that you all spoke of, and that Stephanie had the same in her notes from 40 years ago. Morgan does not respond to his name, or at least won't answer, and he doesn't seem to make eye contact. Somewhere in Sixpence House(the earlier book, in Wales)Collins talks more than once about Morgan spinning the wheels of his toy truck. But, not knowing about any of this, one would think it just a normal toddler's fascination with a toy truck.

Marilyne, Carolyn, and Margaret, thank you again for sharing your grandchildren with us. What impresses me from your comments is that working with these children is, for the parents, very demanding. As Carolyn says, "you have to be parent, counsellor, and researcher to that child." A 24/7 job, even as they get older. What an excellent point, Margaret, about a support group being so important for parents. For pushing for needed programs, but also to know there are other parents who know what you're going through. Some of the articles in the NYT link above tell of the advance groundwork and preparation that parents go through before taking their child to a new environment such as getting a haircut or going out to a family dinner. Things the rest of the world takes for granted, like ballet or soccer. One mother, who wanted her daughter to have a first communion, even got unconsecrated wafers so the child could get used to the taste so she wouldn't spit them out during the ceremony.

I am glad Claire is doing well now, Marilyne and your grandson also, Margaret.

In the book, I realized that Peter was treated like some of the other oddities that this particular King liked to have around. There was a passion for difference back then. I guess I wonder if Peter corresponded to the child ( I believe in California) that was found in the woods back in the early 1900's.. Noone ever knew who or where he came from. He was found as I recall by a hunter and they actually hunted him down to bring him to civilization.Read an article many years ago and was fascinated by the idea of a child growing up in a forest. Never knew what happened and I cant seem to google the right sort of query.

Stephanie, your comments about the child found in California sent me searching too. There were several articles involving "Genie" who was referred to as a "modern-day feral child" --discovered at 13 -years, had lived in isolation and had no language skills. I couldn't find the child you talked mentioned either.

But there was an article about 14-year-ld Tito from India, who was brought to this country in 2001 by an autism research organization. He doesn't talk, but has a huge vocabulary and communicates through a keyboard with voice synthesizer. Researchers say this is the first time a severely autistic person has been able to explain what he is feeling. For instance, he explains that the twirling, flipping, and spinning he engages in help him realize that he has a body. I will ask our technical people to add this article to our links page.

http://college.hmco.com/psychology/resources/students/news/news_20021218.html Young Man Describes Living With Autism

You're right about court oddities, Stephanie, especially those of King George, but wasn't it quite common for royalty back then to acquire those who were different? I wonder too, if King George, who had to leave his beloved Germany, wanted a protege from his native land. In the long run, Peter was lucky to have the King's daughter/DIL? to watch out for him. True then, true today -- the helpless always need an advocate.

I think for Peter the most important thing was finding the kindly family who seem to have taken him on as a continuing responsibility. That had to have been hard.

At the bookstore the other day when I bought Not Even Wrong, the young women also gave me Tito's book, "The Mind Tree". I scanned it briefly and intend to go back to look further and perhaps buy later. Though autistic he has a wonderful ability to convey his feelings through the written word. One phrase that really struck me as I hurried through was, "Gray is the color of loneliness." Just that one sentence makes me want to read more of what Tito was feeling.

Unfortunately I am not connecting as much with Paul Collins and his sections on Peter. When he writes of his own son then I am interested in their story but he loses me when he goes off on Peter---too much speculation, too much guessing. Apparently historians are not even sure, IMO, that Peter was truly an autist since the field of autism was unheard of at that time. Only that, after the fact, maybe some of his behavorisms might fit the Spectrum. But that could be attributed to so many other factors that are unknown since so little was known about Peter's early life, couldn't it?

Phyll, I am with you. Peter could have been so many things. Hard to tell with the limited amount of information. I would guess the important thing here is that Paul Collins somehow identified Peter with Morgan. Reading the Newsweek article and another one ( Time??) I am uncomfortable about associating autism with computer programmers and engineers. I think that the mindset is mostly different. I have a quiet bright son who is an Environmental Engineer. When he was young he had some of the symptoms, but seemed to grow out of them with only 1 year of therapy. He is stil quiet, but very funny and loving with people he regards as his friends. He is now a Head of Projects for Manatee county and as such gets up in front of groups, speaks of the projects and generally is regarded as quite normal, but quiet. Two of his classmates in college were regarded as genuises.. Both were snapped up by General Electric and have been working in research ever since. Neither of them fit the normal category, but neither do they fit the autism one either.. I think that there is a certain percentage of humans who are different, but not necessarily autistic.

From reading your posts I am getting the impression that there is still a whole lot of research necessary before most of these kids can be helped to cope with autism. In this morning's Washington Post I read the following article - which seems to be saying that all the work done getting the autite to make eye contact actually exacerbates the condition.

Autism and Eye Contact

Autistic children and adults are typically reluctant to make and keep eye contact with others -- part of their general lack of social or emotional connection. A new study suggests a basic reason for this: The eye contact overstimulates a part of the brain that processes fear and emotion, and people with autism learn to limit their eye- and face-tracking as a result.

Using brain-scanning techniques, researchers also found that another part of the brain typically associated with processing facial information is underactive in autistic men and boys. Made physically uncomfortable by eye contact, the autistic subjects were not able to take in as much visual information about a face as the control subjects.

In two studies at the Waisman Laboratory for Brain Imaging and Behavior at the University of Wisconsin, the subjects were placed in a magnetic-resonance-imaging scanner that recorded their brain reactions to photographs of faces expressing a variety of emotions. The autistic group consistently showed greater sensitivity than the control group to brain activity in the amygdala, where emotion generally is registered, and less activity in the fusiform gyrus, where the ability to read another's facial expressions tends to reside.

The studies also found that the longer the autistic group made eye contact with the facial images, the greater the electrical activity in the amygdala. The control group experienced no similar reaction.

Researcher Richard Davidson said the experiment was the first to use a brain scanner to follow eye tracking by autistic individuals. He said the results indicate that the current practice of training autistic individuals to look directly at the eyes of other people as a form of treatment "may exacerbate already high levels of anxiety in social situations."
-- Marc Kaufman
Science Diary Washington Post

>
Judy - and all of you who have worked directly with these children - will you comment on your experience with developing eye contact? What did you think of the results of the study out of the U. of Wisconsin cited in this article?

Off to read the next section for tomorrow...thank you all for making this discussion come alive.

I have a friend whose brother has Aspergers syndrome. He has a doctorate in Computer Science. It does seem to suit high functioning Autistic people to work in Information Technology.

An interesting thing happened recently when my friends mother was dying. Her brother hugged his mother in the hospital for the first time in his life. My friend was deeply touched. You could not hug him as a child and he seemed to cringe from being touched. I can remember that myself.

Carolyn

My grandson, Joshua, had all the symptoms of autism at an early age, but his motor skills were also deficient. At age 18 months, after much testing at Mass General it was determined that he had Angelmann's syndrome and not autism.

Patwest - I'm sorry to hear about your grandson's diagnosis of Angelmann's Syndrome. I don't know much about it, except that it falls within the autism spectrum of disorders. It sounds much more serious than autism. If you feel like talking about it, please tell us more about Joshua.

Phyll, thanks for the title of the book about Tito. I went looking for it on Amazon and read some of the reviews, most of which applauded it, although a few questioned its validity. To quote one of the reviewers -- "The author's (Tito) plea for a society in which nobody would be viewed as 'normal or abnormal', but would all be respected as who we are, is well worth listening to." How true. I remember back when I was working, a special ed teacher told me about an assignment he had given he had given his HS behaviorial disability students -- they were to list three things that made them happy. I don't remember the three, but an autistic student wrote --" Getting good grades, not being autistic." Just trying to fit the norm, but aren't we all different.

Stephanie, it sounds like your son has dealt with whatever life has handed him and has made his own successes. You must be very proud of him.

Joan, thanks for the Washington Post article on eye contact. I think you are absolutely right about the need for more research. Your article here talks about the problems that might occur because of forcing eye contact. In two months there will probably be another study that claims it is beneficial. The Newsweek article mentioned the practice of "chelation" or stripping the body of such minerals as mercury. Other doctors claim it is dangerous and puts children at risk. Parents say, "We don't know enough yet to say no. I'll do anything to help our child."

Hegeso, a little earlier, you asked a question many of us have been wondering about -- why are there so many more cases, have they changed the diagnosis? No doubt if we researched that we would find several different answers. One of my daughters is a researcher for a national health foundation, so I asked her what her take was on this and this is what she said:

"That last time I read on this subject it seemed that most experts felt that most, if not all of the increase in autism is due to changes in diagnostic practices (esp. calling a child autistic rather than retarded) and increase awareness -- rather than any change in prevalence of the underlying condition. The studies linking mercury in vaccines to autism have also been discredited."

Here is a link to an abstract she sent from the March of Dimes Foundation. The last sentence reads "These data suggest that improvements in detection and changes in diagnosis account for the observed increase in autism; whether there has also been a true increase in incidence is not known."

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=12108622

Pat, we're glad you're here, and thank you for sharing about Joshua. I had never heard of Angelman's Syndrome.

Carolyn, that was very touching about your friend's brother. I do not know much about Aspergers syndrome either. I remember reading something on the Internet some time ago about a young boy with Aspergers who made a trip to Japan by himself. This was quite a feat and took much much preparation on his part. I wish I could find it again, but I can't. Another article spoke of parents, fathers mainly, who after their children had been diagnosed with Aspergers, said "That's what I was like. I wonder if I have it."

One of the main things about Aspergers is that sufferers cannot read people like we can. They cannot understand body language and they cannot understand emotions particularly those of people other than themselves. They don't even read others facial expressions. They have to teach the sufferers to read facial expressions. They have done tests that show even babies react to different facial expressions when shown women either smiling. frowning or solemn on TV screens put before them.

Carolyn

I saw a doco where two doctors had two normal 18mth olds- developing and communicating normally with others. Then they had their MMR triple vaccine and changed overnight. The two kids had reactions to the vaccine. The twin boys were diagnose with autism some months after their parents had dragged them round several specialists. They showed videos of the children before and after vaccination. It was enough to convince me,

My grandaughter had a terrible reaction to her first shot - then my daughter had the rest done in single vaccinations - cost a lot more but the child did not react to the single, spaced shots.

My DIl had both her boys done with single vaccinations spaced out. She said there is too high a percentage of autism amongst children of the age where they have just had their triple vaccinations for MMR.

I and my family believe the problem is the triple shot not the single vaccinations.

Dogs often have terrible reactions to double shots of vaccines and some even die. Some end up with epilepsy from their double shots. If I was in the position of having my kids vaccinated, with what I know now, I would have the single, spaced shots for MMR (Measles Mumps and Rubella)

Carolyn

The Bettleheim infornation was horrifying. He was the person quoted way back when my son was young. He was the one who blamed parents and caused both me and my husband so much grief. We honestly thought that we were causing the problems that our son was having. I know it is not fair, but some of Morgans problems seem to stem from just flat out never getting him to mind. Possibly this is a symptom that he simply never does anything unless he is good and read and his Dad makes excuses left and right all the time. He seems compelled to believe it is because of Morgans superior intelligence and I am not so sure.

Stephanie, I was completely appalled by what I read about Bettleheim. When you think of the damage that man caused, not only to you and your husband, but to so many parents, to claim that children were autistic because of their "cold unfeeling mothers." And the thing is, some people still think that he was a reputable psychologist, they had never heard of his "defrocking."

A bit of Bettleheim background -- he was a lumber salesman from Vienna who had a total of three psych courses under his belt. Somehow he opened a clinic and started treating children, made a name for himself, and when he fled Austria during the Holocaust was snapped up by the University of Chicago, where he continued his work with autistic children. It was after his suicide in 1990 that the negative information began appearing.

Carolyn, yes, there is still a lot of controversy about the effects of trimerisol (spelling?) the vaccine preservative that contains mercury. There is strong parental group support for the claim against this product, although the CDC refutes it. I saw an article a while back that said some children had a gene that was triggered by the trimerisol.

Stephanie - I agree with you on all of your points about Morgan. Autistic children need discipline and boundaries. Believe me, these kids understand right from wrong. They are not retarded. Morgan was allowed to run rough-shod, over his parents, and everyone else IMO. Also I agree with most of you on the parts of the book about Peter. I just didn't see the point of the comparison. From what I recall of Peter's story, he didn't seem to be autistic to me.

I wish I still had the book, so that I could review it, and do a better job of commenting on Ann's questions. Ordinarily I would buy a book for a discussion in SN, but I didn't like this one enough to spend the money on it. I'm still on the library waiting list, and when I do finally get it, I will read it again just to see if there is anything that I might have misinterpreted.

As for Bettleheim? I thought he was a MONSTER! His ideas destroyed families and children alike. When I was in college in the 50's, and took a class in child psychology, he was at the peak of his popularity. Even then, although I was young and unmarried, I thought there was something dark and ugly about him and his methods. His Orthogenic School, seemed scary to me, even though I knew very little about psychology and children with neurological or psychological problems.

Did anyone read the novel, "Family Pictures", by Sue Miller? Although it's a fictional story, it seems real, now that I know more about autism, and Bettleheim. The son in this family was diagnosed as autistic, in the 1950's, when Bettleheim was at the height of his destructive glory. The story is about how the marriage, and the entire family were ruined. Because, of course, everyone blamed the mother. It is one of my all time favorite books, and was made into a TV movie, starring Angelica Huston and Sam Neil, as the parents. The daughter who tells the story was played by Kyra Sedgwick. I don't remember who played the autistic son, but he was very good.

I believe that children with a range of disorders do best with loving boundaries and routine. You have to assist the child to focus and that also includes not reinforcing anti social behaviour. I know that loving boundaries and routine help my grandchild to focus. My grandchild cannot multi task so they have a white board in the bedroom listing the steps to get ready for school. Another of the tasks is to keep the bedroom reasonably tidy this is done once a week on Saturday mornings Without the task list there would be total chaos every school morning and there would be tears on the part of the child and real frustration on the part of the parents. This way it keeps everyone on an even keel and mornings are pleasant for parent and child.

Carolyn

There has been a lot of controversy over children innoculations it seems prudent to administer them singly but it is difficult to do as you must purchase them seperatly as we found out. But it is not worth the risk of later finding out that might be one of the causes of autism. It is cheaper for Pharmaceutical companys to tie them all together in one dose. There are a lot of very wierd therapies out there that have done much damage to children and families. The Autism Research Institute of America , in San Diego, Calif is a good place to gather information on autism. Yes autistic children need very strict boundries, they can not be left on their own as they will then retreat into themselves, they must be constantly engaged which is very hard to do. It is only the past 2 years or so that my Grandson has been allowed to play by himself. He has been taking Tai Kuon Doe and that has helped him to focus. He loves it I have not been able to obtain the book but have an order in, it will take a few weeks to arrive. Wish I had it now. I know what it is to have an autistic child or grandchild. And I know that there are degrees of severity, but they are truly exceptionally bueatiful and wonderful children.

Kiwi lady, I have a granddaughter who has problems with multitasking. I really like your idea of a board in the room. Will suggest it to her mother, since Kait seems to have very good intentions, she just gets overwhelmed by a lot of things at once. She is also having so many problems learning to read. Not autistic, but more like seeing the world a little differently. She really feels that word are colors..And that is how she sees them.

There has been a lot said here about childhood vaccines and whether or not they have contributed to the rise in autism. One can hardly blame parents for being cautious. On tonight's news there was a blurb about an increase in the number of children not being vaccinated, and the concern of the medical community that this put them at risk. I finally found the article I had seen earlier about a defective gene and trimerosal. (see below) There is also a link about my state legislature's proposed ban against trimerosal in vaccines. Apparently other states have also done this.

http://www.semissourian.com/story.html$rec=152176
Dec. 13 04 Gene flaw may link autism, vaccine additive

http://www.semissourian.com/story.html$rec=157327
Feb. 21 05 Ban on mercury preservatives in childhood vaccines.

Marilyne and Stephanie, I understand what you're saying about Peter and what's the connection. Although one researcher referred to him as an early case of autism, it was only theory. Collins' is an historian and this book is in part, a history of autism or autism research. Peter, or his counterpart, seems a good place to start. Collins' bibliography for Chapts. 1 -4 has several entries refering to feral children in addition to the ones about Peter.

I've been wondering if this book isn't a sort of catharsis for Collins. Researching the timeline of this condition, this disability, understanding where it came from, where it's been, who else has had it -- he's in a good position to do it. And perhaps it helps him to better understand what's happening in his family.

Marilyne, I tried to find the film that you described -- based on Sue Miller's book. Is it also called Family Pictures. I wasn't able to find it.

pedln - Here's the IMDb page on the TV movie, Family Pictures. Be sure to scroll down to the bottom of the page, and read the comment about the film, from a parent of an autistic son.

Sue Miller describes family dynamics quite well. Morgan seems to have been really pushing the limits on his parents. I really feel sorry for both Paul and his wife, although the byplay about points escapes me. The Bettleheim news has sent me over the web looking for how he fooled everyone over such a long period of time.

Thanks, Marilyne. I thought of Paul and Jennifer when I read this comment by the reviewer.

". . . she was always trying to make things right with him and keep the peace. You feel so much guilt when things aren't right with your children."

I'm not excusing the fact that Morgan seems to be allowed to do anything he wants, but I wonder if his parents aren't numb from the diagnosis, so unsure of what to do.

There were many things in this section that surpised me. Some just blew my mind -- the studies that dealt with the family members who had been engineers and scientists -- p.90 "The paradigm occupation for such a cognitive profile is engineering" by Simon Baron-Coen. Autism the "geek syndrome?" Those of you who have experienced autism spectrum in your family -- do you find that realistic?

The other truly remarkable thing, for me, were the parallels between the work of Kanner and Asperger -- two men unknown to each other, separated by oceans and war. And they both coined the term autism. Amazing.

Stephanie, Collins has at least one book on Bettelheim in his bibilography -- The Creation of Dr. B: A Biography of Bruno Bettelheim by Richard Pollack. There may be others.

I was wondering also about the point thing between Paul and Jennifer, and need to go back and reread to see if I can figure it out. It sounds like the points decide who's going to do what around the house. From the comments I remember, it sounds like Paul thinks he's getting the short end. I don't think it has anything to do with Morgan.

Pedln, I have to agree with you. These are first-time parents, struggling to get some help after receiving the devastating diagnosis. Paul's dining room table is piled high with books on Autism. He can't seem to find anyone who can help Morgan, so he turns to research. I don't think this little guy suffering from lack of discipline but he is clearly suffering when he has to leave the shelter of home. So are his parents. Don't misunderstand, I'm not saying that Morgan didn't need discipline and order...it's just that his parents don't know this yet - don't know what will help him get along in the world.

I am struck by the pain of all the parents who suffered the guilt put on them by Bettleheim...At the same time, I am amazed at Paul's realization that he himself was afflicted in some way.

I'm not clear yet about the degrees of autism, or the different manifestations. I am heartened to hear the stories here how autistic children have been helped and have learned to cope. Is there hope for Morgan?

We have friends (acquaintances) with an autistic son. He is five years old. He doesn't speak at all. They tried him in public school, but were unhappy with the program provided for him. He is now home-schooled - by his father. (His father was once a Chemical engineer before he geve up his profession to work with Ben.) I feel so badly for them - for all three of them. They never go anywhere. They can't even rent videos to watch at home because the boy will not let them. I hear success stories, yet don't see it in the cards for this boy.

Joan it sounds like the parents need to put in place some discipline for the child. Also there is sleeping medicine available that they could use one night a week so they can have some time to themselves say after 8pm to watch a video etc. This is not barbaric its a matter of the parents survival. Without any time out these parents will self destruct.

I have one grand who is prescribed for, one week at a time, each month so that the parents can get some sleep for one week. The child is grateful for the sleep too and queues up for the medicine. The sleeping medicine was a last resort for my grand after all other therapies including natural therapies failed. Its only a stop gap method too and doctors are hoping the medicine will in time get some sort of sleeping pattern going for the child. If not more specialists will be consulted. Nobody wants to have to use these sorts of drugs on kids but sometimes its just unavoidable and will save the parents and the child.

Carolyn

Carolyn, sometimes people just have to do what they have to do. I do hope there will be some kind of sleep patterning effect for your grandson soon.

Joan, that is a truly devastating story about your friends. I do hope they are getting professional guidance. To be sure, there is much controversy about the different treatments for autism sprectrum disorders, but surely there is one to help this child make some progress. It's interesting that his father is an engineer.

My city is a small city (pop. 35,000) like many others across the U.S. It has one newspaper,the Southeast Missourian, which puts out 25, maybe 30 pages on a good day, but last spring it did something quite remarkable. It ran a four-article series on autism and autism's effect on individual local families. And then another remarkable thing happened. The newspaper received letters from all over the country, praising the series and thanking the newspaper for publishing it. People were so grateful for the information.

I don't want to burden anyone with a lot of extra reading, but if you have the time and are so inclined, I think you will find them interesting and heartwarming. One thing comes across loud and clear, a repeat of what many of you have already said -- parents of autistic children have to fight, push, and bargain for their child's best interests. They have a tough row to hoe.

First Steps, a program operated by the federal government, pays for special education treatments up to age 3. After that, the local school district takes on the responsibility.
"As soon as they find out the diagnosis is autism, they start preparing for how to deny services," Collier said.

Two sets of criteria for autism diagnosis create conflict
http://www.semissourian.com/story.html$rec=136352
Describes the differing criteria used by the medical community and by school districts to determine if the child is autistic.

******

A world coming alive
http://www.semissourian.com/story.html$rec=136286
Focuses on applied behavior analysis as it is used to treat two young patients; also describes social reading therapy and music therapy.

********

"The 6-year-old looked up at his father and said, "Daddy, do you remember when I couldn't talk?"
"Yes, son. I do," Richard responded.
"Daddy, I heard every word you said," Ben replied

Ben's new beginning
http://www.semissourian.com/story.html$rec=136287
Steady slow progress and a success story for another Ben

******

Prognosis varies among autistic children
http://www.semissourian.com/story.html$rec=136166
Signs of hope for autistic young adults.

My Grandson who has Asperger's Syndrome seems to be making some progress. However he is still a real trial to the rest of the family. I remember once hearing my son say to my daughter-in-law ,"Penny, we have to teach him how to behave because no one else is going to."

I really think that has been the real key to his progress. They have had to teach him how to act in every situation. Of course there are still unexpected things that come up.

When Theron died and they arrived at my house. My grandson hugged me and told me that he was so sorry. I know that was not easy for him to do and that he had probably had been instructed on what should be done but I really appreciated his doing it. Also the last time they visited he voluntarily hugged me and told me good-bye when they left. This was progress also. He used to just pull away when I would try to hug him but the last time he came to me.

Joan Grimes

I disagree rather strongly on the correlation between autism and engineering and scientific types. They are different perhaps, but not autistic. I know far too many engineers who may be quiet, but talk quite a lot when they hit a subject they like and want to spread the word on. I think that from what I am reading ,that any problem with any human is now due to autism. Just not so..There are a wide variety of problems with people, not all due to a simple diagnosis. I think this is the new disease of the week. Our local paper calls all of the children in the special classes, autistic now.. Just not true.. So I was disappointed in that part of the book.

Joan, how good to see you here, and thank you for sharing about your grandson. I am so happy you can see progress. I know his hugs meant a lot to you.

Last night I lay in bed wondering how does one discipline a child who does not communicate. How do you know if he/she understands he did something wrong? How does the little one let you know he didn't know it was bad, he did it because . . . ? Paul and Jennifer don't give him popcorn if he doesn't say the word, or won't let him nurse if he won't say the word, but eventually the child has to eat. The little I've read about ABA it sounds like a system with rewards. Margaret, can you explain more about it?

Stephanie, I think you're right in that many disorders are being called autism, but I think also, that a wide range of disabilities fit under the umbrella. Semantics aside, there are many children who don't communicate and who need help. Several years ago, our assistant librarian, who also taught an English class described one of her new students -- he was labeled "an elective mute." Academically, he fit into a sophomore English class, he was not a behavior problem, but he supposedly chose not to speak. I wonder if he would be labeled the same today.

I mentioned earlier that I see a lot of visual images in this book. This one is of Morgan, going to speech class the first day. Here's this little guy, who, as Joan said, "is clearly suffering when he has to leave the shelter of home," has not been much around other children and here come two little girls who take him by the hand. But the big person has cards, so maybe this won't be so bad. But then when Morgan gets a card, the big person grabs it back, and Morgan has to grab it, and the big person grabs it. What trauma for a first day at school. What a dilemma. Do you continue to subject your child (who hadn't a clue) for his own good, or what? I'm beginning to see some threads in my readings -- of the groundwork made by parents before they try anything new with their autistic children. What did you think of Morgan's first day at school?

Stephanie - I'm going to agree with you on a couple of points. My husband happens to be an engineer. (retired) He does not have any of the personality traits mentioned, except for the ability to focus completely on something that he's interested in, and enjoys doing, such as working on the cars or playing his trumpet, etc. He is not easily distracted. But his basic personality is cheerful, friendly, outgoing, neat and tuned in to what's going on. He has lots of friends, lots of energy, and is always busy with something productive or fun.

The basic computer "nerd" type engineer is usually a LONER. These men, (and women too I suppose), have very few, if any, interests except their work. They don't smile much, and are uncomfortable in social situations. My youngest daughter worked here in Silicon Valley, and dated many of these young men over many long years. Believe me, some of them were really weird! Nice, but different. Looking back at two of the guys in particular, I can now see autistic or Asperger's traits in both of them. Claire's parents are my other/older daughter, and her now, ex-husband. He is not an engineer, but the owner of a Sil Valley machine shop, that made intricate parts for the computer industry. He was one strange guy, and I was so relieved when my daughter divorced him. He was in denial about Claire's autism for the first 10 years of her life, and NEVER went to a single doctor appointment or evaluation. He was/is also an alcoholic, and had lots of girl friends on the side. They were married for 20 years. (That's a whole other story that is too long to tell here.) They also have three other children, who are fine. They show no autistic traits, but have lots of other problems from being raised in a disfunctional family.

(Sorry - if anyone noticed my post was suddenly missing and has now returned! I went back to edit something and accidently deleted the whole thing. Fortunately for me, I had it saved.)

Yes ABA is a system of rewards and praise. Watching my Grandson 2 years old then with his teacher was so hard for me. They sat facing each other - she asked Michael where was his nose as she took his hand and brought it up to his face. She did this 5 or 6 times asking him where his nose was and saying very slowly NOSE. Then started just moving his arm up and finally he did it himself - this was after about 2 hours. Well then the clapping and dancing and hooraying and calling his Mother to see what Michael can do was wonderful. He got a cookie and was so proud of himself. It could take 2 to 3 weeks just to identify the facial features then on to body parts ( knees, elbows, stc. Everything is documented and recorded so you can see the progress that is being made. Everyone is encouraged to watch the lessons so as to engage him at all times. It is so tedious and demanding and in my own way I likened it to creating grooves or channels in the brain that were not there before. Then eventually new channels opened naturally. For us it worked. He is doing very well now in 1 st grade at school, where he receives occupational and speech therapies but is in regular class otherwise.

Margaret that is a wonderful story you tell about Michael. I am so happy for him. When he grows up he will I am sure be so grateful he had parents so caring and such a dedicated teacher.

With my grand there is great rejoicing when she sleeps through the night with the drugs. They all danced and hugged when she had one full nights sleep. She has no drugs on Monday night when we will see if her brain has been reprogrammed to sleep. Her parents are worn out and have just been loving this week of sleep! I don't know how the poor child has survived school until now with virtually no sleep month after month. If this therapy does not work it will be another doctors conference and maybe another type of drug.

Carolyn

Margaret, what a wonderful explanation of ABA, and how proud you must be of Michael. It's sounds like a very tedious, often frustrating process, but certainly worth it if it helps the child fit into the world around him. Your explanation of creating grooves and channels in the brain reminded me of books read so many years ago about a little girl with cerebral palsy. The therapist would come every day to move her legs and arms to achieve what she called "patterning." Not exactly the same, but perhaps related.

After reading your story, I went back and reread about young Ben --

A World Coming Alive (Ben's ABA)

He worked with his aunt who was a trained ABA therapist(6 hours a day, at home, in a room called Ben's ABA room). My question is, are they (the therapists) the only ones who can work with the child this way, or are the parents also expected to work with the child, to reenforce what the therapist does?

An excerpt from the article - - -

"Those who endorse ABA point to a study that shows 50 percent of the autistic children who participated in comprehensive preschool programs were mainstreamed into traditional elementary classrooms. Early intervention, all autism experts agree, is important in getting autistic children on the right track and reducing long-term costs.

Critics of ABA, including many public school officials and special education teachers, say ABA, as many parents interpret it, is based on the same basic psychology tools taught in college. Many say ABA "techniques" should be incorporated into larger programs. "

I wonder if the father of the little boy Joan P spoke of is using this program with his child. It is such an expensive program, and many school districts say they cannot afford it, that it seems the only option is for parents to get trained and do it themselves.

Stephanie, your quote "Our local paper calls all of the children in the special classes, autistic now..Just not true." You are certainly not alone in thinking that. My health researcher daughter said something similar when she said that many who had been diagnosed retarded were now called autistic. But the children we have been talking about here, Morgan, and the others, have not been called retarded or EMH -- educable mentally handicapped. On the contrary, they have displayed considerable intelligence.

I received an email yesterday from a friend who was a family therapist. He and his wife have been following this discussion, but prefer not to post. I have his permission to share his comments with you. I had asked him earlier about his thoughts about Bettelheim and why the increase in autism diagnosis.

"Bettleheim was very popular here when I first went into practice but he slowly went out of favor. Re: autism. My initial training put all these kids into a group of slow learners. My limited practice with this group led me to believe they follow the typical bell curve of intelligence. I worked with kids with a wide range of intelligence and that is my present position. . . .I did find that I did have to be patient with this group. With other people who were very bright , kids and adults, I could move quickly with them and make rapid progress. I never did crack the code with autistics as to why I had to be more patient with them and I suspect that is part of the reason why people thought they were "slow"."

My reason for doubting the diagnosis. I have a sister in law (actually a first wife of my brother, but we are very close).. She has a Ph.D. and is head of a school program for the children who are different. She has many different types. Some are mainstreamed. Some stay in special classes, some do a little of both. She was recently emailing me about the difficulties since the new buzz word is autism. She felt that they were using this in too wide a variety of cases. She was interesting about depression in young children and a variety of other problems, none of which really fit the diagnosis of autism, but are not retarded either.

Books, Manuals and detailed instructions can be purchased, sorry I do not have addresses any more, that patents can obtain to try themselves. It is very difficult and time consuming but from our experience well worth the effort. The State Health Agencies should be able to provide some help with information Also the Autism Research Institute (www.autism/ari/) and The Autism Society of America (www.autism-society.org ) will send much information. There is a program for home use called "The Me Book" which we used as well The local school should be able to obtain educational resource catalogues for teaching at home. But everyone should try to find a SUPORT GROUP - who will share information about school programs, therapies, and state or insurance aid..

Have you looked into Diet for your Grandchild. Some autistic children have food allergies and need a glutten free diet. Poor sleep and diarrhea are symptoms, also very limited preferances for food.

Margaret - my grandaughter is not autistic but does have another brain malfunction. She is very intelligent but the malfunction hampers her. She does have a dairy allergy and is not allowed any dairy foods. No gluten allergy. Studies have shown that with the right diagnosis now made and her parents very educated about the condition, with a special tutor she will eventually catch up on her school work.

The next big hurdle is to work on her perception problem- she sees coloured pages when the pages are white. The print sometimes blurs into the colours. There are special eye doctors who can treat this problem with therapy. The fault is not in the eyes but in the way the brain is processing what she sees when she looks at a book.

She will never be able to multi task and will have to use the list method to keep on top of things. Her mother has the same disorder and did very well at school once things were sorted out but always things were so much harder for her than they were for other kids. Her mother can help my grandaughter a lot using her own coping mechanisms. She is a beautiful most affectionate child and her mother says with asthma, allergies and now this problem with her brain she cried for her when they first realised she had additional problems. Tonight is the night when we will find out if the sleeping therapy has worked. If it hasn't its back to the doctors for further investigation. My grandchild is desperate to sleep but her brain will not allow it. Its just far too busy as she explains it.

From what I have heard in anecdotal evidence its parents that ultimately make the difference in cases like my grandaughter and also autistic children. They have to be the therapists at home 24/7 in conjunction with the once a week or so therapy the children get from the specialist. Its true love and dedication! I really admire these parents.

Carolyn

Carolyn, is there a name for your daughter's condition, and is there any kind of support group for it in New Zealand where your granddaughter lives? Margaret mentioned earlier how important a support group was. I hope you find that the sleeping therapy has done its job.

You are so right that these kids, whether it's a reading disability, a learning disability, a sensory disability or what, they have to work twice as hard kids without those problems.

Carolyn, parents are the best advocates of all children especially those with disabilities.Parents are the true Heroes of our world. It was professional people, Doctors mainly who had autistic children that first made the big push for research as their own medical training gave no answers. Let us know the results of the sleep therapy and my prayers are with you all. Science is only beginning to know how the brain works, perhaps someday there will be answers.

Stephanie,I've been rereading your post #101, where you talk about your sister-in-law's concern about the overuse of the autism diagnosis. Does she feel that some children are not receiving the correct diagnosis, thus making treatment more difficult? It seems Paul encountered opposing thoughts when he was researching in England. One of the doctors involved in the production of an autism documentary there said, "Lack of diagnosis is an important issue. Profound autism won't go undiagnosed, but others along the spectrum do.We're finding a significant discrepancy between diagnosed rates of autism and actual rates." She was concerned about the cases that were missed.

Marilyne,that is so sad about Claire's father, never going to a doctor's appointment or evaluation. Is he still part of Claire's life? I have been thinking about your granddaughter because being a teenager is difficult enough without having any additional problems. One of the articles in the NYT special section ( As Autistic Children Grow, So Does Social Gap ) talks about how things get harder for the autistic child as he/she progresses towards middle school and junior high. The classmates who were friends in the elementary grades no longer want to be part of anything "uncool" or different. "Kids have very short memories when they're young," said Terese Dana, one of a growing number of behavioral therapists and psychologists who are making a career of teaching social skills. "They are much less forgiving as they get older." I do hope that this has not been Claire's experience. I do not mean to pry, but you have been so gracious in telling us about your family. I only wish for them the best.

Pedlin, My sister in law feels that there are so many forms of problems that dont fit into the social acceptance. Autism by the time they reach school has certain factors that are accepted as forms of the problem. As she puts it, she now has parents pushing autism as an excuse for disciplinary problems, non readers,clear ADHD children and childhood OC and schizaphrenia( wow, what spelling). She is concerned that autism is being made to fit too many problems and that the solutions are not good for many of the other problems. As she puts it.. when you are really verbal and have been since babyhood, the chances of being autistic simply do not fit.. I suspect I see her point.

Stephanie - you can have good verbal skills and have Aspbergers Syndrome.

Carolyn

Here are two sets of diagnostic criteria -- that used by physicians and that by school authorities in Missouri.

Physicians use criteria from the Diagnostic and Statistical Manual of Mental Disorders to diagnose autism, while school officials use criteria from the Missouri Department of Elementary and Secondary Education. Here's a look at how the two sets of criteria compare.

DSM criteria

A child must exhibit at least six of the following symptoms:

Marked impairment in the use of eye contact, facial expression, body posture, gestures
Failure to develop peer relationships
Doesn't seek to share enjoyment, interests or achievements with other people
A lack of social or emotional reciprocity
A delay in or total lack of spoken language
Impairment in ability to initiate or sustain a conversation
Repetitive use of language
Lack of make-believe play or social imitation play
Preoccupied with one or more restricted pattern of interest that is abnormally intense or focused
Inflexible to routines or rituals
Repetitive motor mannerism, such as hand flapping or twisting
Preoccupied with parts of objects

A child must exhibit delays in at least one of these areas prior to age 3:

Social interaction
Language
Symbolic or imaginative play

School district criteria

A child must exhibit disturbance in one or more of these areas:
Abnormalities that extend beyond speech to many aspects of communication
Absence of communicative language
Characteristics involving both deviance and delay
Deficits in the capacity to use language for social communication

A child must exhibit disturbance in one or more of these areas:
Abnormalities relating to people, events or objects
Capacity to form relationships with people
Absent or delayed use of objects in age-appropriate way
Rigid about routines

Source: The Diagnostic and Statistical Manual for Mental Retardation and the Missouri Department of Elementary and Secondary Education

The name of this book is from a statement by Wolfgang Pauli, a Nobel Prize Winner inthe field of Atomic Structure. He had very little patience for false theories that people were always presenting to him. One day he was presented with what he felt was true idiocy so he said:"That is so bad it's not even wrong." Perhaps Collins was tired of false theories and looking for what was really applicable to his sons' needs. Regarding what Collins writes about Bettleheim. He dismisses Bettelheim out of hand because of his theories regarding causes of Autism. He bases his opinion or on Robert Pollacks book or on the synopsis of that book which can be found on Google. Pollacks bother was in the Orthogenic school in Chicago for five years and died under strange circumstances (on a home visit). There was a lot of dislike toward the school and toward Bettleheim personally. In the years that Bettelheim ran the school (1947-73) very little was known about the disorder. Aspergers theories were not heard of. In hindsight it is very easy to attack a person for his theories after they were proven wrong because of advances in Psychiatry and Brain Imaging. Bettelheims clinic was very helpful to many disturbed children,many of them not Autistic. Some children were not helped. Bettelheim had a Doctorate in philosophy and not in Psychology or Medicine. Nevertheless his eighteen books were a beacon of awareness of disorders in children during a period of time when little was known or written on the subject. His suicide was at age 86 after his wifes death and after a severe stroke made living very difficult. This end is not a salient factor when trying to assess this mans contributions to childhood disorders. Why was this suicide made important in Collins book? Probably to make a negative picture in our minds or because of lack of research on his part. I could go on but I'm probably boring everyone. So Good Night, Judy

in fact I am agreeing with much of what you are saying. I find myself more and more skeptical of Collins and what I feel is his somewhat biased and sketchy research. I have the feeling, and no, I can't back it up with documentation, that he is searching out only facts that fit his pre-conceived notions and disregarding, or discarding, anything contrary. I am, and have been from the first, disturbed by this book as a definitive study of autism. However, the stories and experiences that all of you are relating here are very interesting and informative. Autism covers such a broad area of experience (if that is an acceptable way of stating it) and it is interesting to hear how each of you and your families are dealing with this puzzling and sometimes heartbreaking condition.

The most interesting thing that I have found in doing some Internet research on my own is that many Asperger Syndrome people seem to resent being considered "victims" and don't like to be subjects for a "cure". They simply want to be, like all of us, accepted as they are.

I dont blame the Asperger people. Many of them have so few symptoms and get along well in life. Just depends on how severe and how strong minded the individual is. I found a really neat Fiction.. autism.. The Curious Incident of the Dog in the Nighttime by Mark Haddon. Picked it up yesterday and hope to get it read this weekend.. Autistic child who becomes a detective.. written by someone who has worked with autistic children. Should be interesting. Bettleheim. My reason for hating him is that he laid so much guilt on my husband and I way back. Since all of the psychology at that time blamed the parents for all psychiatric problems with children. Hard thing to live with.

I just finished it and I was completely engrossed in it. Our county-wide library system, Wake County, NC, makes a book selection every year and everyone who chooses to participate reads the book and then each library has a discussion get-together at the end of the time period. This past year it has been this book by Mark Haddon and it has generated a lot of interest.

Even though it is a novel it is written from the view point of an autistic boy. IMO, it gives a very insightful picture of the working of the mind of a particular segment of the autism spectrum.

I hope when you read it you will tell us what you think of it.

That book was read over the BBC in daily episodes. I just loved it and it gave real insight into the mind of the autistic child.

With Aspbergers the main problem of not having any therapy is that the syndrome causes relationship problems in a big way. If the sufferer wants to be accepted for what they are, in a marriage situation it is a big ask and I for one would not consider marrying someone with Aspbergers if they had not undergone therapy because a lot can be done to help sufferers cope with intimate relationships.

Aspberger sufferers are often very high achievers and can function in the work place but its one to one relationships that are the big problem. They can also function in a club situation if they have a special interest. The person I know with the problem belongs to a hiking club. However he is still single at 40 and seems to have no friends other than his siblings who make allowances for him.

carolyn

I've already given my opinion on Bettleheim, and don't want to repeat. But I will say again that I think he was deceptive, and even evil many ways.

If you want to read a wonderful fictional story on how Bettleheim's theory destroyed a family, read "Family Pictures", by Sue Miller. I know I already talked about it, but it's worth mentioning again for anyone who missed it. "The Curious Incident of the Dog in the Nighttime", is an excellent book also. They are both fiction, so hard to compare to, "Not Even Wrong", which is a true story. I can't put my finger on exactly why, but I just didn't care for the Collins book. I'm still planning to read it again when my name finally comes up on the waiting list at the library. Maybe it's one of those books that you like more, the second time around?

and his laying guilt upon the parents, especially the "unfeeling, uncaring mother" (Bettelheim's words), isn't Collins indulging in some of that same finger pointing when he writes of the high incidence of autism appearing in families where professions such as computer programming and engineering predominate (along with artists)? How many touted up those professions in their families? I certainly did. Sean's Grandfather - computer profession (35 years) and studied for a second degree in Engineering; Sean's Mother - Computer Science Degree and Programmer, as well as a math whiz; Sean's Father - Computer Hardware Engineer, Sean's Uncle - Computer Programmer. And while I was counting all this up there was that guilty thought that all of us culminated in this boy having ASD. We were guilty of giving him Asperger's Syndrome.....if you believe Collins' reasoning. But since no one as yet seems to know exactly what causes Autism I don't think that has any validity. None of us should feel guilty until we know what we should feel guilty about!

You all are going great, and I'm really getting a lot out of your posts. Sorry I haven't been around. I've been gone all day on top of having some printer/computer problems. Back soon.

There are a number of books written by Autistics. Has anyone heard of Temple Gradin, she wrote "Emergence - Labeled Autistic" She is very renouned in animal science. Another is "Pretending to be Normal"- Living with Asperger's Syndrome by Liane Holliday Willey. Another is "Nobody Nowhere, Somebody Somewhere" by Donna Williams. When my Grandson was diagnosed I read extensively and still have some of the books. The best for a very young child is "Let Me Hear Your Voice" by Catherine Maurice. She is the Mother of a very young child and explains the different therapies they tried and the research that was being done in the early l990s.

The name of the book was taken from a statement by Wolfgang Paulie,a Nobel Prize winner in physics. He did not suffer foolish statements easily. When a student suggested a theory Pauli said "That's so bad it's not even wrong". Perhaps Collins was pointing to other theories and saying this about those other paradigms which were not acceptable to him for his son.

In particular he may be pointing to Bettelheim. However Collins is looking at Autism and Bettelheim from a perspective of 2004. The years Bettelheim ran the Orthogenic School were 1947 to 1973. He wrote 18 books on problems of Children with various disorders (not just Autism). He was one of the first people to turn all his attention to this subject during a period of virtual guess work in this field. Collins found POLLOCK the one author who really didn't like Bettelheim because of personal reasons relating to his brother who lived in the clinic for five years and died in an accident at home. Yes ,Dr.B was a self centered Guru type person with a strong Germanic heritage. However he built a paradigm when there was none before. His paradign for Autism proved wrong and with advances in Brain Imaging and Medicine perhaps todays theories may prove just as wrong. Should we despise those that in good faith work with these theories today? Personally I don't think so. Judy

Remember Dr Spock? In his old age he admitted his theories were not correct on child raising. The kids turned out totally undisciplined. My cousin had Spock kids we all dreaded their visits!

I agree with Judy that we have to look at theories and treatments in the context of the age in which they were conceived and practiced. Medicine was pretty horrific in the 1900s for instance.

Carolyn

Judy, thank you so much for your information about Bettelheim. It's good to have more than one perspective, even if not everyone agrees. I agree with those who say you need to consider when the theories were developed and practiced. But, I don't know how forgiving I would be if I had been told by him or his protegees that my child was autistic because I was a cold, unfeeling parent. Really, that seems so subjective. What kind of data would he have to put forth such a damaging theory. As for Collins' data on Bettelheim, I don't know. He lists only the Pollock book in his bibliography, and I agree that his (PC's) comments made Bettelheim appear as some guy off the street posing as a psychologist. I appreciate that you gave us a more complete picture of his educational background, and also the info that Pollock may have had a biased perspective before he even wrote the book.

Phyll, you asked again how many of us touted up the engineering professions in their family. I know I did. 3 out of 4 kids with engineering or science backgrounds, although the physics PhD decided she didn't want to be a techie and now works for a nonprofit, with disadvantaged persons. Their father, a computer person turned lawyer. My brother, an engineer. No one has been diagnosed autistic, but it's interesting to look at the interests and personalities of the different family members. I don't think Collins is pointing a finger at anyone or profession. He's an historian, and I think he's basically reporting what's he researched. The same chapter that talked about the engineering profession also mentioned the autists fascination with Star Trek. (I wish Collins had an index so we could go back and pinpoint what we're looking for.) One of my grandchildren loves to build complicated toys and has in his bookcase just about every Star Trek publication.

You all have been mentioning several different books, both fiction and non, about autism. I'm going to put Curious Incident. . . and Family Pictures on my reading list. Margaret alson mention several -- nonfiction?. Jan Sand had talked about Temple Grandin earlier, and at our SeniorNet Books at the Beach get together recently, someone was reading her recent book Animals in Translation : Using the Mysteries of Autism to Decode Animal Behavior. Perhaps it would be a good idea to get a listing of these books you have mentioned. I'll start compiling and ask one of our tech people if they could put it in the heading.

More later.

At the beginning of the week I sent an email to Collins' wife, Jennifer Elder, whose address someone had given me earlier, inviting both of them to our discussion. I heard from her late Monday night and she said that Paul would/could not participate because he didn't want to keep people from saying what they really think, but she would be delighted to pass along any inquiries, and perhaps even answer some herself. So, I don't know if she is "visiting here" or not, but I would be happy to pass along any questions or comments any of your would like. No doubt our No. 1 question would be -- How is Morgan?

In chapter ?, Dr. Simon Baron-Cohen recommends a book to Paul,
Martian in the Playground by Claire Sainsbury.
Sainsbury was diagnosed with Asperger Syndrome at age 20, and this is her first-hand account of what it is like to be a school-child with AS.

I am finding that I am getting so much more out of a rereading of this book because of your posts in this discussion. Some of the things I just glossed over during my first reading are now making sense and becoming meaningful. Chapter 10, which focuses on synesthesia was especially difficult for me and is now making sense. Synesthesia, experience one sense when another sense is stimulated -- for example, the sensation of color when a sound is heard. Carolyn, I couldn't help but think of your granddaughter, who you said sees colored pages when they are really white. This chapter has a lot of strange things in it, but Collins gets to MRI and PET scans and how much they reveal of the working of the brain. What apparently happens is that during infancy there are all kinds of neurons growing because of the mass of data the infant has to absorb. Then when they are no longer needed, these neurons are deleted, pruned. And this is what allows us to separate the senses. But in autistics, the neurons stay, resulting in crossed wires. In the final paragraph of that chapter Collins says,

"The brain is like the walls of an old house, filled with disused wiring from earlier days: imagine if those lines were left live and uncapped so that a great cross-wired mass of electrical impulses poured in. Synaesthesia is the neurological equivalent of switching on the kitchen lights and simultaneously setting off the blender. In autism it is the equivalent of flicking on the light switch and blowing out the bulb. When autists flap their hands and thrash about, it is to protect themselves. They are being shocked by their senses.

Marilyne, that reminds me so much of what you told us about your granddaughter. That the doctors had said it was her way of relieving stress.

I have extra sensory problems. For instance sometimes bright lights can give me a boring pain in my brain. Like a drill going through my eye ball. Loud noise with lots of people talking at once sends my brain into overload and I can get a panic attack. The lights over the food in the supermarket ( those special fluorescent lights) can set me off feeling peculiar.

If I go to the movies which is not often I have to wear dark glasses and if the sound is too loud I have to leave. My brain just does not cope with these things.

As a child when I got sensory overload from something happening around me or something that had overloaded my emotions I would fly into uncontrollable tantrums. I was taken from doctor to doctor about my sleeplessness and my tantrums. The only diagnosis I got as a child was that I was very intelligent and my behaviour was related to my intelligence. My mother was advised to run me to the bathroom and put my head under the cold tap. To this day I cannot bear having water run over my face or to put my face under water to swim. That was another barbaric way of treating a child with problems not understood.

Not every child who throws tantrums is naughty. Apart from these outbursts I was a very biddable child and probably the most well behaved of my siblings.

Carolyn

I have not read this book, but am very interested in your discussion.

I have a grandson who has been diagnosed with Asperger Syndrome. He has a gift for music. I found out one day that he not only hears music he sees it. When I asked exactly what he sees he told me, colors. Every note has a different color to him and he actually sees the colors. He is now fourteen and plays violin, guitar, and electronic keyboard. He has problems reading music, but has no trouble playing anything he hears.

He also has a great deal of difficulty socializing with others. He likes every day to be the same and gets upset with the slightest change in routine. Contrary to popular belief about Asbergers, he does make eye contact when talking to you. He does not comprehend expressions like "your're pulling my leg". I have run across a book for autistic people that defines various expressions and slang terms for them. I have been thinking about getting it for him.

His mother home schools him as the public schools did not know nor have the time to figure out how to teach him. She has become quite an expert on his condition, so much so that she has been asked to give talks before support groups, etc. From what I can understand all autistic children are different just as the rest of us are and have varying degrees of autism.

I do not think of my grandson as having anything wrong with him, I just think of him as being different from most of us.

Denjer - It seems your grandson has been very fortunate in having such a dedicated Mum. I too really am amazed at the way my daughter works with my grandaughter to help her with her dyslexia and the yet undiagnosed other problem of the sleeplessness and the busy brain.

I did mean to tell those of you who were enquiring that so far we have some sort of regime for my grandaughter. She is on one night of the prescription sleeping meds and two nights of Valarian ( herbal sleeping meds) On the nights she has Valarian she still does not get to sleep til after 10pm ( she is only 7) but she sleeps all night til 6.30am. On the nights she has the prescription meds she sleeps from 8pm to 7am. Of course this is not satisfactory but its all we can do in the meantime.

Her doctor who is a young South African man has had experience with Children with disorders like my grandaughters in SA is seeing her every week. He is so wonderful. He only charges Nicky a follow up fee which is saving the family a lot of money. There are still some professionals left in the world who restore ones faith in humanity. If after three months on this therapy sleep routine is not restored my grandaughter will be referred for specialist diagnosis.

My grandaughter is so tired but her brain is so busy that its impossible for her to sleep without intervention. She begins to get fearful as night approaches and its so sad to see her so distressed. I had her for one night on her previous meds and she came out every few hours looking for reassurance. Unfortunately lack of sleep makes my fibromyalgia worse so I can't have her overnight any more except in a dire emergency. She keeps saying "I can come for a sleepover when my sleeping problem is sorted out". She loved coming to sleep over when she was little. Then she was saying to me "Laura can come for a sleepover when my sleeping problem is fixed up" (Laura is her little friend. They were born one hour apart in the same hospital in adjoining birth suites. They have known each other since their day of birth and shared birthday parties etc) I feel so bad for this affectionate lovely natured little girl. Honestly there is not a mean bone in her little body.

Carolyn

Denjer, it's great to hear from you. Your grandson sounds like a wonderful boy and you must be proud of him -- and your daughter/daughter-in-law (?). It was interesting to see your comments about his seeing colors. That is exactly what Paul Collins was talking about in Chapter 10 of his book -- synaethesia. It sounds like your daughter/DIL is growing right along with your grandson, and you must be proud of her too, that she is able to lead and help others learn about this condition. I was so happy to read the last sentence in your post -- "I do not think of my grandson as having anything wrong with him, I just think of him as being different from most of us." I think that is the message that Collins is trying to leave in his book.

Carolyn, your family must feel really blessed to have such a wonderful caring doctor. Sometimes that's half the battle. I do hope the sleep meds work for your granddaughter. She is fortunate also to have such a dedicated mother who works so hard with her. She sounds like a lovable caring little girl and I hope she can soon have sleepovers again.

This is again information for our discussion. I am a Child and Family Therapist and have worked with Autistic children. Morgan Collins has aspects of Aspergers Disorder and some of the typical repetitive behavior of Autism. There are many differences between the two. The main one being the development of speech. In Aspergers there is a sustained impairment in social interaction and the development of repetitive, restrictive patterns of behavior,interests and activities. In contrast to Autism there are no significant delays in language. In addition,there are no clinically significant delays in cognitive development or in the development of age appropiate self help skills ,adaptive behavior (other than in social interaction) and curiosity about the envirement. I'm sure as researchers investigate these disorders more and more specific diagnosis will evolve. When working with young Autistic children the main goal in the beginning stages is the use of speech. Morgan used speech in his own idiosyncratic way but there was no doubt that he was using language.

I just received an email from Jennifer Elder after sending her our first question, asking about Morgan. Such good news. Here it is.

Thank you for asking about Morgan. He is in Kindergarten now, in an all-autism classroom, and things are going very well. They have introduced him to all sorts of new things we'd never thought of, like yoga and roller skating, and built on his traditional passions--musical instruments, the computer--as well as his new one--Spanish! (He has figured out how to change his computer games to the Spanish settings. Go figure.) We also had another baby in June, a boy we named Bramwell. Our fears about how Morgan might react to a new sibling have so far proved to be unfounded. I wouldn't say Morgan dotes on Bram, but neither has he attempted to evict him, so...

Our best to you, and the group,

I often wonder about my grandaughter. She is only 7 and is obsessed with art. She spends hours each day doing drawings paintings and making things. She is a talented cartoonist ( original). Her room is covered with art work and art supplies are out all the time on a huge desk her parents bought her for her art. Her father and Aunt are both talented artists. When she cannot sleep she can be at her desk drawing in the middle of the night. I have never seen a child of her age so dedicated to Art.

Is my grandaughter obsessed or is her artwork an outlet for the frustration with her dyslexia? Is it that its something she is good at and she needs to keep on with it as some sort of reassurance that she has something of worth to contribute, She gives away a lot of her art and the family have framed some of it and hung it in their homes.

She recently did a project for school about the honey bee. The detail in her drawings were amazing and even the presentation of the whole project was artistic and beyond her age in sophistication. Her Mum helped her with the text with spelling etc but she chose the wording. She has amazing recall for facts too and her mother read her a book and she remembered facts enough to complete the project without having to refer to the book a second time. Her mother said she remembered much more than she did herself and my daughter has always had good recall.

Carolyn

Adding to my previous post about my grandaughter. I just remembered that about four weeks ago she was drawing at my place. She drew a little girl with a huge monster at her back. The monster was towering over her and had a really menacing look. Believe me my grandaughter can give life and feeling to a painting. It was scary.

I kept the drawing and unbeknown to my grandaughter showed it to her mother. I felt that the drawing was a message about how my grandaughter was feeling about her life. We think its that the dyslexia and the sleeping problem are like a monster in her life. She feels overwhelmed. My daughter took the painting and I dont know if she showed it to the doctor or not but suspect she may have.

I don't usually analyse the grands artworks but this one really spoke to me immediately I looked at it. I just KNEW it was a message.

Carolyn

So I tore through Curious Incident. What a marvelous book.. Fiction, but I suspect that anyone dealing with an autistic or Asburgers syndrome child will recognize the boy.. Amazing book, in that you are in it somehow with him and his parents.. I felt so sorry for the parents at the end, that I wanted to write them and then realized they are not real. Still it is amazing.. If you have not read it, do so.. Wonderful book. Now, my granddaughter who is very very verbal, but having incredible difficulties learning to read.. She insists that words are different colors and that when you say certain words to her, she sees them in color.. This seems to really be causing problems with reading for her. She is quite a talented artist, but this does not help in Florida. She is 9 and just had to take the FCAT, which is a statewide test for certain grades ( she is 3rd grade). They must pass this test or be held back. We paid for a private tutor for her all year since she was badly behind and we were all concerned about this small dear human, who tries very hard to do everything that is asked of her. She is not autistic, but there is on the other hand, something there.

Stephanie there are eye doctors trained in this problem. They have the brain-eye connection sussed out. My grandaughter will be going to see one in the next month or two. She has the colour problem too but in a slightly different way. Will keep you updated on what he says. There ARE therapies to help! This perception problem which is the name they use for it is related to dyslexia.

Carolyn

While I haven't been a poster to this discussion I want to thank you for the email to those of us in the earlier Sixpence House discussion giving us the update about Morgan.

I see you posted also in Post 131.

It is very generous of Jennifer to respond to any questions SN might have. It's nice to hear that Morgan is getting involved in directed activites like yoga and roller skating. And now he has a little brother! Congratulations to the Collins' family.

Marvelle

I've read Not Even Wrong and was moved by the story of this family. I highly recommend the book to anyone in this discussion or reading the posts here because there are some things in the book that could be missed. Even as I'm reading I think I'm missing what's being shown, not necessarily told, on the pages.

I have some confusion when Paul and Jennifer first go over, with Mindy the early intervention specialist and Mary Jo, a speech pathologist, the results - compiled in a folder full of papers - of the evaluation done of Morgan. [from p49-50 as follows:]

Mary Jo: "First of all, no one number is going to provide you with a conclusion. What we look for is a pattern, a tendency for certain behaviors and skills to cluster together."

We nod obediently. We will not jump to any conclusions based on any one number. Anyway, I probably signed a form promising to be reasonable.

Mary Jo: "Here's the developmental history -- let me know if we've got the facts wrong ... "

She begins reciting from the first page as I skim through the text: "Paul was evaluated as a child for possible hearing impairment. So Morgan's selective responses to sounds and words as well as limited language seemed a familiar pattern. Parents report normal developmental milestones with the exception of communication."

"Paul?" Jennifer says.

"Hmm?"

Mindy hands us another set of papers.[end quote p49-50]

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So Paul was evaluated as a child for hearing impairment. Why? Because he responded slowly to outside stimulae? I think so many of us can see traits in ourselves. Paul writes on page 58 of his interest in Peter the Wild Boy:

"But long before going to the doctor, before the batteries of tests on Morgan, before the diagnosis, before we ever imagined anything -- I had been chasing a silent boy through the even greater silence of centuries, when my own boy was in front of me all along. How? How could I not have seen it? Something drew me to Peter, something so obvious now that Stark barely mentions it in passing in his book: An early case of autism." [end quote p58]

.

Don't the majority of us -- if not all -- have the fear, at one time or another, that we're the Other, the Outsider, Different? And is that the something that drew Paul Collins to Peter the Wild Boy?

Marvelle

Marvelle, welcome, and I'm so glad you posted. Do you think that Paul was drawn to Peter because he (Paul) had autistic tendencies? Because he was autistic-like? Maybe. On page 102 he tells his mother he thought he was in the special ed class because of his hearing, they were always testing his hearing. But his mother tells him it was because of immaturity and "fits." And Paul says:

"Nobody ever asked me why I stomped my feet or thrashed around with my arms. . . It was overwhelming -- horrible -- the blast of noise of everyone talking at once . . and why can't they stop it? The radius of my flailing arms and legs formed a bubble in which I could enclose myself. It made me feel calm--in a frantic sort of way.

Judy, thanks for your explanation of the differences between Aspergers and autism, especially the language aspect. It does appear tht Morgan is using language, in his own way, as evidenced on p. 98-98, where he "talks" with his letter cards. But he is not communicating.

This afternoon I watched the French film The Wild Boy (L'enfant sauvage), Francois Truffaut's 1969 production about the wild boy of aveyron. "Victor" was about 11 or 12 when he was discovered and caught, and eventually brought to be nurtured by Dr. Jean Itard. Itard used much the same methods used by Paul and Jennifer. If Victor wanted milk, he had to say the word first. And when he succeeded in other directives, he was rewarded with a glass of water, which he loved. It was a good film, available on DVD. I highly recommend it.

Stephanie, every time I tell someone about Not Even Wrong, they ask, "have you read or have your heard of the Curious Incident. . ." It sounds like that book is truly making waves. One of my friends has promised me her copy as soon as it's returned after being loaned out. What a coincidence that your and Carolyn's granddaughters have so much that is similar -- both interested in art, and both with a color problem in reading. I don't understand the Florida Dept. of Ed with this test that all third graders must pass before being promoted. I won't say what I think because this is not a political discussion.

Pedlin, I agree, but this is not a political discussion. However the news this year in Florida is that they are making all of the special ed students also take this test. Sad but true. What it accomplishes , noone knows.. Paul,, this part of the book made me understand that perhaps Morgans problems were partly inherited. His behaviour as a child were certainly unusual. Yesterday in the paper.. there was a short article about mercury and autism.. Cant say it made sense, but it seems that in some areas ( Texas, I believe) autism is a very high rate of incidence.. and at the same time, the area is high in mercury.. Hmm, I suspect a resercher with too much time on their hands.

Stephanie, apparently there are two camps regarding mercury and autism. When our local paper ran its series on autism a year ago there were several comments and letters about thimerosal, a mercury additive to childhood vaccines. The CDC says that based on epidemiology studies, they see no connection between it and autism. Other groups show statistics stating otherwise.

Gene flaw may link autism, vaccine additive

Recent research states that some autists have a defective gene that makes them more susceptible to the mercury product. One of your Florida Congressmen, Dr. David Weldon, has been the leading government anti-thimerosal spokesman. In Missouri, there is/was a bill before the state legislature that would ban mercury preservatives in any vaccine given to children younger than 7 years. I do not know if it has been voted on.

To my knowledge, Collins does say anything about this in his book.

Pedln asks: "Do you think that Paul was drawn to Peter because he (Paul) had autistic tendencies? Because he was autistic-like? Maybe."

Dr. Scott, a collegue of Baron-Cohen says: "lack of diagnosis is an important issue. Profound autism won't go undiagnosed. But others along the spectrum do." (p94) Collins says that there are degrees and varieties of autism and some autists aren't diagnosed until they're adults.

I feel, however, that we can see traits in ourselves if we think about it. I'm a reader and writer which means extended periods of solitude, focusing on the story, total absorption and where is the line drawn there with 'normalcy'? Because of this activity why am I called a reader while someone else is called autistic? Social labels, as opposed to medical treatment, become meaningless.

Paul cites research to the effect that autists statistically are more likely in families with occupations requiring deep focus and abstraction. There's Paul Collins' meeting with Professor Baron-Cohen who, from the extensive bibliography in the back of the book, is author and co-author of at least three specialized books. Baron-Cohen; "We've been looking to extend the engineering study into the tendency toward systemizing among the autistic and their families. This encompasses a range of activities, as well as professions …." It means file clerks and accountants. It means puzzle fanatics and musicians. [end quote p93]

.

Paul Collins makes a list

my father: merchanical engineer
jennifer’s father: musician, math major
my brother: phd in computing
Jennifer: painter

.

me

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Pedln,I think that's what Paul Collins in saying but can't be sure and don't know if it matters except in context of this story.

Marvelle

I have a question that I'm hoping Jennifer can answer although it's not related to the book's subject. From the discussion of Sixpence House we know that Paul has a doctorate, he's a classicist, and we know of his passion for books.

My question(s): What was his area of study or specialty? Is there a specific timeframe and has the scope of his interests changed since earning his degree?

I've always been curious about that.

I'd also like to thank him for citing so many books here in Not Even Wrong and in Sixpence House. I'm particularly fond of The Venetian Glass Nephew by Elinor Wylie. Thank you for introducing me to so many fine books.

Marvelle

I posted in First Book Cafe and realized I had another question for Jennifer: Did Paul have the idea for the jacket?

Remember how he found the jacket design for Sixpence House? This one is nice and mysterious and you can find why, for instance, there is a Popcorn box on the front by reading the inside of the book. Would the cover be a metaphor? (Maybe that's another question.)

By the way, I have an idea of Paul's area of study based on his familiarity with certain books. Does anyone want to hazard a guess?

Marvelle

Marvelle, I brought your comment from First Page Cafe over here to put with your other question about the cover.

"Product design? I was thinking last night about the book jacket for Not Even Wrong and its mystery. Haven't figured out the Marbles yet but the Popcorn and the Butterfly I remember. Do you think Paul had the idea for the jacket?" Would the cover be a metaphor, you ask.

Have any of the rest of you figured out any parts of the puzzle? I know where the popcorn comes from. And the ticket stub -- that's from England where he asks for a "cheap day return" to go to the town where Peter lived out his final days. The photo -- most likely from the 19th century, but I don't know which doctor is doing the examining. Will have to go back and reread there. I don't remember the marbles and Marvelle will have to share with us the butterfly -- that's a butterfly? And the white rectangle with a cutout -- is that one of Morgan's beloved cards?

As we finish section 4 of the book, if there are any questions you all would like to ask Paul and Jennifer, please bring them here and I will email them to Jennifer. I would like to know about his educational background also, and had not remembered that he had a doctorate. My guess is that there is a history degree there, and perhaps one in philosophy.

When a child receives a diagnosis of psychopathology there is always a debate which arises with the the child's parents: Did it have a visible onset? Does it reside in the body or in the mind, in the individual or in his society? Will it disappear just as it arrived-unexpected,unbidden and unwelcome? This is a stage of acceptance that the child is profoundly different from the norm. That raising him will demand extroadinary efforts on the part of the parents. Paul Collins wrote a book about this stage. Personally I hope it helped him to accept the situation with as much grace as possible under the circumstances. I did not finish the book with the feeling that Paul had really passed into a full stage of acceptance. I wonder what others feltabout this issue? Judy

When a child receives a diagnosis of psychopathology there is always a debate which arises with the the child's parents: Did it have a visible onset? Does it reside in the body or in the mind, in the individual or in his society? Will it disappear just as it arrived-unexpected,unbidden and unwelcome? This is a stage of acceptance that the child is profoundly different from the norm. That raising him will demand extroadinary efforts on the part of the parents. Paul Collins wrote a book about this stage. Personally I hope it helped him to accept the situation with as much grace as possible under the circumstances. I did not finish the book with the feeling that Paul had really passed into a full stage of acceptance. I wonder what others felt about this issue? Judy

"I did not finish the book with the feeling that Paul had really passed into a full stage of acceptance. I wonder what others felt about this issue?"

.

I think he had and he wrote the succession of concern, discovery, denial, partial accepteance, realization, acceptance, adjustment. He wrote of the point where he discussed with a autism specialist the possibility of lifelong dependence to be faced with the specialist's reply of 'probability'. (p195)

Following the section on probability, and one of the most heart-rending to me, is when Paul goes to a coffeehouse and is confronted by a lecture from a stranger (who is actually having an interior dialogue with himself, but outloud), the earnest painter-of-light-bulbs, seeing how others in a coffeehouse snigger at the man's devotion to the subject, and how he himself feels compelled to listen. (p211-2)

The other people in the coffeehouse sigh and make scoffing sounds and otherwise ignore the speaker and Paul thinks "Can't you at least be polite? -- but I just sit and watch helplessly from across the coffeehouse, as the fellow rattles on and on and they still refuse to acknowledge his existence. And then, suddenly, it's my turn [for the lecture on painted light bulbs]... I'm stuck there, trapped in a conversation where I'm not even needed, because it's as though he's talking right through and past me."

"But I don't dare leave; I can't, I just can't go and pretend this man isn't there."

When Paul is released from this, he finds a spot blocks away where he cries. Why? Because he sees what can happen with Morgan, the boy who loves music, the boy who tap dances on iron grates, and who he may not always be able to protect. "I'm about four blocks away when I set down on the steps of a church. I'm not religious. It's because if you cry on the steps of a church, no one bugs you. If you cry on a homeowner's front steps, they call the police."

"I can't bear the thought that someday, somehow, someone will be cruel to my child. Or pretend that he is not even there."

.

I think this is the point - terrible, heart-rending - where Paul accepts what he, Jennifer, and Morgan will face. He cries and he had to find a place where it was okay to cry. But he doesn't given up.

There are two places where I cried too in this story. This is one of them, when Paul weeps alone on the steps of a church.

Marvelle

The front cover is a Joseph Cornell-like box which encloses the assemblage of photo, popcorn, ticket, book title, butterfly and marbles. Paul Collins name is outside the box.

Marbles in a description of Joseph Cornell boxes:

"They are in their own world, sealed within boxes of glass and wood; compartmentalized constructions of stuffed birds, scraps of Baedeker maps, assemblages of children's marbles and disembodied doll parts, hotel ads and pharmacy jars .... Each piece on its own is curiously interesting but gives no clue to any greater meaning; but then, when you stand back and see the box assembled as a whole, the combination becomes unsettling and beautiful."(p201)

There isn't enough time to stand back and see the cover or the book within but I'll lay out the other objects from the book that are depicted on the cover. Connecting the dots may not be possible, but, like the Cornell box, it is interesting.

Marvelle

The marbles also represent the lack of a theory of mind.

"Sally and Anne have a box and a basket in front of them. Sally puts a marble in the basket. Then she leaves the room. While Sally is gone, Anne takes the marble out of the basket and puts it in the box. When Sally comes back in, where will she look for her marble?"

"It's an easy question to answer: Sally will look in the basket, because she doesn't know yet that the marble has been moved .... Only.....the autistic kids keep missing it. 'Sally looks in the box,' they will answer -- if, of course, you get them to answer at all."

"The Sally-Anne test is the classic demonstration of autism's defining characteristic: the lack of a theory of mind. Most autistic children do not distinguish between their own minds and other people's, and the notion that someone else might be thinking different thoughts or seeing things differently does not occur to them. They cannot imagine that Sally does not know what they themselves know. Nor will they follow another person'sgaze or pointing fingers; if the other person could not be thinking or seeing anything different from themselves, there is no point." (p85)

Marvelle

Paul Collins demonstrates the lack of theory of mind and the dilemma that ensues in interaction with others. A physicist "used to deride colleagues in theoretical physics who disagreed with him as 'not even wrong'. He meant this as a put-down -- that the questions they were asking were so off-base that their answers were irrelevant. Yet [this] notion could also be applied to those who are autistic. They do not respond in expected ways to questions or to social cues ... but then, only a person working from the same shared set of expectations could give a truly wrong answer. The autist is working on a different problem with a different set a parameters; they are not even wrong.... When an autistic child's speech is transcribed, entire classes of verbs may be missing from the child's vocabulary -- specifically terms that attribute a mental state to another person, Believe, or think, or know...all vanish. The concepts do not exist." (p86)

.

I'm quoting for those in this discussion, or reading this discussion, who don't have the book in hopes they'll be intrigued enough to get the book. The remaining images in the book jacket cover have shorter explanations.

Marvelle

"Fritz W. was one of the early cases [of Dr. Asperger at the Vienna Pediatric Clinic]. They showed the boy a picture of a fly and a butterfly and asked: 'what is the difference between the two?'

'Because he has a different name ... Because,' the boy explained, 'the butterfly is snowed, snowed with snow.' (p63)

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Asperger wrote of one boy, lost in abstraction with a helplessness in matters of practical life, who acted "as if he had just fallen from the sky". Then follows images of snow falling on Paul (p64-5). I've noticed that there is repetition in some of the images (snow also on page 9; butterfly on page 148 with Morgan not responding to a woman talking to him as he eats ice cream). The repetition may be a literary technique of connection.

Marvelle

Judy and Marvelle, thank you both for your very perceptive comments and for raising the question has Collins reached a stage of acceptance of Morgan's diagnosis?

I think Collins has accepted the diagnosis that his child is different from the norm, that more will be demanded of him and Jennifer for his care, and that others may not treat him well. I don't know that he has or will ever or should accept or think of him as "disabled." In one of the chapters in sec. 3 or 4 Paul and Jennifer talk about their old house, which they love, and how they really don't want to move. "But if we should, maybe a duplex -- for our parents when they're old -- or for Morgan." On pages 175-76 they discuss the possibility of having a second child -"I don't want Morgan to be an only child." "Going into the world alone is tough for anyone." "There's a chance -- 4% -- another way of asking --would you do this all again?" "I'm ready for it." "I am too." And as we now know, they had a second child this past June.

Marvelle quoted Collins "I can't bear the thought that someday, somehow, someone will be cruel to my child. Or pretend that he is not even there." Don't all of us with children feel that, dread that, even when they're adults. I have a gay child. She's very happy in her community, her work, her monagamous relationship. And I look at the world, this country, and know that I can not bear the thought that someone would be cruel just because of one small part of who she is.

It is the last paragraph that tells me they have reached acceptance --

"I guess I'm used to getting the stares. . . . If we don't make sense to them it's fine because we all make sense to each other. And anyway, it's not what they think. It's not a tragedy, it's not a sad story, it's not the movie of the week. It's my family."

I had never heard of surrealist American artist Joseph Cornell before, but what a wonderful comparison to the book's cover. One of the Google articles said something to the effect that while Cornell used garbage in his boxes, he claimed they were precious pieces of something left. Another -- "Joseph Cornell was very shy and often sad, but he said that his boxes gave him "a world of complete happiness."

Paul writes a good deal about the absorption some people have with train/bus schedules; the sense of order and security that a schedule provides. He also writes of being in another country (England) and buying a train ticket:

.

"Round trip to Berkhamsted, please."

"Pardon?" the ticket agent says.

"Rou--" I stop. I've momentarily forgotten where I am. "Cheap day return to Berkhamsted."

"Eight pounds ten." (end quote p52-3)

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This is an example of entering another world and adjusting to a different mode of communication than he's used to. Adjustments are constantly expected in daily life.

Marvelle

We simultaneously posted.

What a hopeful statement about Cornell! "Joseph Cornell was very shy and often sad, but he said that his boxes gave him "a world of complete happiness."

I hope that Morgan has this also. Your daughter has her world of happiness. If we're strong, if we don't give up, I think we all can find and live within what makes us happy.

Marvelle

I had an awakening of sorts of what it like to be autistic. We were traveling and stopped to visit relatives. While there I used my phone card to make a call. I have used this phone card so much that my fingers just punch in the numbers (AT&T 800 # and phone card#) automatically. The difference this time was that they had an old fashioned dial phone. Trying as hard as I could I was not able to rmember the numbers using a dial.It was as though the position of my fingers were an intergral part of the memory process and I could only punch them out on a keypad. I had to get my card out.

In that brief moment I got a glimpse of the inner workings of the brain and realized that this is what the world is like all the time for my grandson. Does anyone grasp what I am trying to say?

Denjer, I think I understand in part what you are saying, but please correct me if I'm wrong. You are saying that we (or our brains) get used to certain patterns, and when we leave those patterns, but try to accomplish the same goal, wires get crossed and we can't do what we planned. Your examaple - you always use touch tone phones and can remember numbers -- but change to a dial phone, you can't. <my example I usually don't have any trouble driving to my friends' homes, picking them up, dropping them off, etc. But if I have to go from a different direction, I'm easily lost.

My next-door-neighbor's son is autistic, a young man now, studying animation half-way across the country at the California Art Institute, living with family friends. We've never talked about T's autism; she refers to him as "my artistic, autistic son." For years, I noticed a Christmas stocking hanging in their dining room window. One day last November I stopped by for something and said, "Oh, you've got your Christmas tree up." and my neighbor said, "that tree is always up." So I guess what you mean, Denjer, is that we're all wired somehow, probably all differently. And, some of us get our wires crossed more than others. And changes in our surroundings make things harder for some of us.

Yesterday I sent an email to Jennifer Elder, thanking her for her response, and passing on some of the questions that had been posted here. I also said we were pleased that Morgan was doing well, and I commended the Portland School District for having an all-autism kindergarten. Well, read on below. It totally blew my mind.

Ah, yes, Portland. After an early intervention preschool that was a triumph of public education, everything fell apart. The school district decided to go to a "full inclusion" model, putting the autistic kids into regular classrooms with little support. After several meetings with the well-meaning but overburdened staff of our neighborhood school, it became clear that it was not going to work. So, with heavy hearts, we started looking around for a good autism program, and found Iowa City. As homesick as we are for Portland and our friends there, we are truly grateful to have Morgan in such a terrific school. But here's the kicker: several months into Portland's grand experiment, the special ed director quit, and they're going back to the old autism-focussed classroom that we had wanted all along. It figures.

The cover is indeed meant to look like a Cornell box--well spotted! Of the other items, the butterfly refers to something from the Asperger passages, I believe, when a patient describes a butterfly as being full of snow, or something like that. The marbles relate to the "Sally Ann Test" for mind-blindness (whether a child can tell what someone else knows). The white ticket behind the British Rail ticket is from a Viennese tram, though you couldn't tell it to look at it--that was the artist's choice. And the central photo is actually an image of a Victorian doctor stimulating facial expressions, but it reminded both of us of the way an autistic child can examine one in what can seem a haughty manner. And we just liked it aesthetically.

Paul's specialty is actually 19th century American literature, and he came to history through that. He was influenced especially by a professor, David Reynolds, who drew him to undiscovered and forgotten works.

My book was originallly to be titled "Autistic Like Me," but my publisher preferred "Different Like Me," and who am I to argue? The concept came from other parents in our preschool, who would often mention famous historical figures who seemed to have autistic traits. That got me thinking that many autism/Asperger's families would benefit from the idea that genius and autism seem to run along the same spectrum. So I spent a few weeks at the library--before Bram came along--and came up with twenty good candidates. It's entirely speculative, of course. I looked for figures who were successes in the arts and sciences, but who had social difficulties or compulsive behaviors. Then I wrote short biographies, and hoping that the publisher would match my words up with a good illustrator. They liked the book, but thought maybe I could do the illustrations as a package deal. So Uncle Marc and I got to work on a collaboration, which is just now drawing to a close. Perhaps now I'll get back to work on Bon-bon...

(Bon-bon is the book about Dinosaurs that Jennifer was working on when the family was in Wales.)

Oh Pedln, do thank Jennifer for her response! And thank you for communicating the questions from this discussion. Good work!

I've been traveling and hope to get back into this discussion before it's over. Do need to unpack days of dirty laundry however. So grateful that the airport inspectors never had to go through the return bags.

After reading all these posts, I'm inspired to get in touch with Benjamin's parents - the autistic boy who had a bad experience in Arlington's public school system and is now being home schooled by his parents. Wasn't that something that the Collins gave up their Portland house and moved to Iowa? (Only to realize that Portland had realized the problems in mainstreaming the autistic children!)

I scanned quickly through the many wonderful posts ...and still have a question about something that I remember reading in Not Even Wrong - forgive me if it's been answered and I missed it. The PET scan (or the MRI) of the visual area of the brain shows activity in the autistic child even when there is no stimulation of that area. I can understand how that activity is compounded when the autistic child comes in contact with real outside stimulation. And I can see how the diagnosis can mistakenly be for an attention deficit disorder. My son had much therapy for his inability to pay attention or listen to his teachers when there was any other noise or distraction in the room. Imagine if the "noise" is in your own brain! Judy, are autistic kids routinely given a PET scan or MRI to see if there is brain activity in the visual area of the autistic child's brain? I guess what I'm asking - is there an easy way, a scientific way to diagnose the condition?

I too was touched by the events Paul Collins experienced...the light bulb painter who caused the father to cry on the church steps at the idea that "someday, somehow, someone will be cruel to my child. Or pretend that he is not even there." Another time...when he thought he heard Morgan say "I'm all alone." That was heart-breaking - even though he wasn't saying that at all. Does an autistic child feel that way do you think? Carolyn, your granddaughter's artwork seems to indicate that kind of fear.

Quite a contrast from the beginning where every effort was being made to find a "cure"...ending with- "If we don't make sense to them it's fine because we all make sense to each other." I do think that the Collins have reached a stage of acceptance. I hope that Benjamin's parents can someday find the same. Right now they are in a frenzy to find the "cure".

Laundry calls. Want to thank you all for sharing from your hearts, Pedln for thinking to contact the author and Jennifer for taking the time to answer the personal questions. I will be looking for her book, Different Like Me - most of Not Even Wrong was from Paul's point of view. Jennifer's experience should be somewhat different.

ps Pedln's post on Richard Booth, the proprietor of Sixpence House reminded me of correspondance I had with the man back in December of 2002...I'd be interested to hear about his Nebraska town of books! This was the last I heard from him:

"Thank you for your e-mail. I am starting a booktown in Brownville, Nebraska, and fight a lonely battle against thousands of academics who do not realise that 99% of books in the world cannot be sold on the internet - their only salvation is booktowns. Are you in England or America?

Kind regards Richard Booth"

Dear Joan, Brain Scans are very expensive and are used infrequently. It mostly depends on your insurance and who your M.D. is. There is not one attitude among Pediatricians. Usually Neurologists and/or Psychiatrists can order Brain Scans. Possibly in the future it will be a more accepted procedure for diagnosing childhood disorders.I hope so. Thanks for bringing up the fact that Jennifer was in the background in the book.Possibly she didn't want to be in the foreground. Very often parents aren't in accord when a child has a serious problem. Many couples even separate or divorce. Sad but true.Each parent sees the problem in a different way. If they do agree it is easier for them and the child. Best wishes, Judy

Just got back from a few days away with our granddaughter. After reading Pedlins email.. I guess I still struggle with the bed in the room.. the walking on the piano, etc. All traits that have little if anything to do with autism, but a good deal to do with separation of child and parent. I guess there is a huge subculture out there with parents who have decidedly different ideas of what works and what doesnt with children.. We just moved from an area, where our neighbor nursed her first son until he was four, carried him everywhere and made a pallet next to her bed for him.. He is a true monster and she is now very unhappy with her at 8.. She had a second child, and decided to listen to her husband ( very french husband). So the second boy was weaned, slept in a crib, etc. etc. He is a nice funny little 3 year old. The neighborhood loves him and laughs when he comes out to play. The older one,, we all went inside and locked the doors, because he will walk right into your house, take what he wants and walk back up.. Scary child.. So I do have reservations on how children are often raised.

JoanP, so glad you're back from your travels in time to join us for this final week. Jennifer's message really threw me. I felt so good for the family, after her first response, hearing about the new baby, and how happy they were with Morgan's school experience. And I'm still happy about that. But, oh my goodness, what a blow to have to move half-way across country to find an educational program that works for your child. No doubt Paul does much work online and it would be easier for them to move than someone who has to punch a timeclock at XYZ place every day. But he's probably doing a lot more travelling as well. It sure does point out, though, what's been said throughout this discussion -- that parents of autistic and other special needs kids often have to make tremendous sacrifices and work very hard to get treatment and education their children need. I hope your little friend Benjamin and his family will soon reach the stage the Collins family seems to have attained.

I've had a little bit of trouble understanding "theory of mind" which Collins talks of when he describes the Sally-Anne test -- the one with the marbles and basket -- which Marvelle has shown us in her post 150. It's become clearer to me now when Collins talks of how Morgan waves at him -- "it's with his knuckles facing out and his palm in. Because he sees his palm as he's waving, he thinks that's how I see it. It makes sense in a way." I get it, I get it -- what he sees he thinks everyone sees. Does that also mean what he thinks, he thinks everyone thinks?

Is that why discipline, behavior, disruptions, are difficult to deal with? Some friends just stopped by for a glass of wine before they went out for dinner. They brought up the subject of autism (Don Imus TV program) and of course I jumped in with Not Even Wrong and the struggles to find a school for Morgan. One of my guests had worked with autistic children in her elementary school art classes. "It was hard," she said, "because he would always talk out, disrupt the class." I don't know, Stephanie, I was pretty shocked at the walking on the piano, but I don't know how one disciplines a child if his mind is off somewhere else. Maybe it just takes longer. Margaret, Marilyne, did your children have these types of problems with your grandchildren?

Judy, sad, but true, that families with special needs children do break up. That happened to "T" in my neighborhood, and I thnk it weighed on him. Several years ago he came up to me at the "teacher" lunchtable in the cafeteria and asked, "how can you have kids and grandkids when you don't have a husband." At the time I wondered if someone had put him up to it, but now I don't thnk so. I do thnk someone spoke to him later about it because he came and asked if he had embarrassed me. I assured him he had not.

My Grandson did not have too many priblems as he had Behavioral therapy very young. His parents were in total agreement about his treatment and totally focused an him. His other Grandmother and myself agreed that his parents knew best what was good for him so we never second guessed them but did try to learn as much as we could about autism to understand a little of what they were going through. We all lived in N J at the time and from the support groups that I went to know that many people moved to N J for the public school programs in a few towns that were excellent. Most of those programs were in effect because of families getting together and bringing law suits. A couple of lawyers that represented them had autistic children themselves.

My daughters friend teaches children with disabilities at high school.

Something that really gave her such a kick and made all her hard work worthwhile was the day she returned from cancer surgery. The first kid to meet her and insist on carrying her briefcase was a 17yr old autistic boy. She said it was an absolute thrill to see him actually identifying with the difficulty she had carrying the case. (She had breast surgery). She was very teary eyed when she was telling us about this incident.

Carolyn

The families who have the means and ability to move across the country, to find the very best educational program for their autistic child, are indeed fortunate. But lets not forget that the large majority of autistic children do not have advantages like that. Most families have to make due, with whatever is available in their community - which is usually very basic.

If you want a good picture of the ordinary family with an autistic child, go to Google or any search engine, and type in - autism message board. You will find countless web sites (usually health related or child related) containing boards, where parents are exchanging dialogue about their autistic kids. It's a real eye opener, because you will see that most of these children are from ordinary homes, where the parents are doing the best they can, with little help or support from anyone, and no special schools. The thing that is really sad, is that so many of the messages are from single moms, who have been abandoned by their husband. (Usually after hubby learns of the diagnosis.) Many of them are really struggling .

The other surprising thing you will see on these boards, is that many families have more than one autistic child. A surprising number are twins! In spite of all this, most of these young parents are upbeat and hopeful, and have managed to maintain a good sense of humor. Some of the stories they tell each other about their daily life, are funny and sad at the same time. They are so brave and so strong.

Talking about moving moments with Autistic Kids..Thirty years ago I worked with an Autistic Boy for about 4 years. He was 7 when this incident happened and I remember it as if it was yesterday. I picked him up and showed him a mirror and he looked and looked and then said in a quavering, questioning voice, "Oren?" (his name). I said Yes, yes that is Oren. You are Oren and he hugged me a real hug.I hugged him back. We had a true moment of contact . His improvement after that was slow but steady. At Least for the year I continued to work with him and he was able to partially participate in a Special Ed Class. Judy

Pedln, you wrote of Morgan "what he sees he thinks everyone sees. Does that also mean what he thinks, he thinks everyone thinks?" I think so but, if there's still time, this could be a good question for Jennifer.

I was saddened to hear that the Collins' had to move yet again because of the discontinued Special Ed class. It isn't easy to move here in the U.S. when you don't drive and, as writers, don't have a large or even medium-sized income. Plus the Collins' left a known community and their friends. Parents, however, will sacrifice and do whatever is humanly possible for their children. The Collins' did their homework though in finding Iowa City and I know they'll be happy because they found a good school for Morgan.

Pedln provided a link to the Collins Library in the "First Page Cafe" and mentioned the first sublink on the Library page is Paul's literary blog "Weekend Stubble" with a paragraph on the writer Flann O'Brien:

Collins Library

The "Weekend Stubble" is a cool blog. Flann O'Brien is one of my favorite writers and he wrote in Irish and English. One of the first O'Brien works I read was the very very short novel The Poor Mouth, published An Beal Bocht in 1941 and it's the only one of his novels written in Gaelic. The novel was translated into English and published in 1973. The title (both Gaelic and English) comes from a Gaelic expression--"putting on the poor mouth"--which means to exaggerate the direness of one's situation in order to gain time or favor from creditors. The direness one finds here is great indeed, as is the exaggeration.

O'Brien also wrote The Third Policeman and At Swim-Two-Birds. Wonderful writing. I'll post in "First Page Cafe" some excerpts from O'Brien's articles, translated into English, on a professional Book Handling Service and an Escort Service.

Marvelle

Marilyne, I followed your suggestion about typing in "autism message board," and oh my, what an eye opener. It's wonderful these support groups exist, because going it alonge would be very difficult. One of the things that was showing up on the board I looked at was the concern many of these parents had about the new bankruptcy laws. Treatment and schooling can wipe these parents out financially and many parents were afraid the new laws would affect them adversely.

Others wondered what to tell their kids about their condition. "He knows he's different," said one parent."He does things that gross out the other kids, he picks his nose." But then other parents come in and say, "Yes, but so do all the other kids." It's not all because of autism. Sometimes it's just being a kid. But if you didn't have someone to help you and point these things out, you might think everything your kid did was because of his condition. I kept thinking of the Collins family and hope they are part of a support group like this. My guess is that they would be.

The board i visited had good things to say about schooling in New Jersey, Margaret. Wisconsin got high marks too.

Marilyne, interesting that you mention twins. In one of the links above there is an article about a diary that was kept from day 1 by the mother of twins. It's been a while since i read it, but it turned out that one of the twins was diagnosed autistic, the other was not. Now that they have a gauge for comparing infants they hope to be able to diagnosis earlier and thus start invention programs earlier.

The boards also brought up something that hasn't been mentioned here, but certainly is another hurdle in diagnosing autism -- something called "global delay." We all know that all kids don't develop at the same pace, but with global delay they are enough behind the norms to be misdiagnosed with other syndromes. Judy, perhaps you can tell us more about this. My understanding is that some kids who had been diagnosed autistic were later said to have global delay. It's a new term for me.

Carolyn and Judy, those are heartwarming stories about the students. It takes a special person to work with special needs kids. The progress they make might show in very small increments, but the actual accomplishment is huge.

This will be the last week of our discussion, but it is not to late to bring up anything new regarding autism. Very little has been said about trimerosal and mercury additivies to vaccines. Have any of your family members been involed in that issue. Those of you who have read the book or parts of it, do you have any comments about Collins' writing style? Has he left you with a message? Do you have one for him?

Collins ends his book with an extensive bibliography (including works by Asperger, Oliver Sachs, and Temple Grandin). And you will notice that PatW has included a books page in the heading with links to all the books you have mentioned. Both are worth a look. Pat's found a really great page that annotates many of Temple Grandin's books.

Dear Pedln, There are a number of different type of delays. One child couldn't control the salivary glands and drooled all the time. He also had poor control of his knee joints and fell a lot. He caught up with others by about age 8 or 9 and ended up with an IQ of 120. His parents and teachers were willing to call him retarded but a combination of good therapy and a good Neuroligist makes all the difference. Never give up on your child but do give up on those who are not helping him or her. The brain can be helped in many ways and is a growing organism in the child. Each child with Autism is an enigma to be deciphered and helped. Best wishes, Judy

Judy, what a wonderful message to all parents-- "Never give up on your child but do give up on those who are not helping him or her." Thank you for your explanation. That poor child. I'm glad that someone persevered and helped him reach his potential.

One question for Jennifer would be "is Morgan's bed in the parents' room there because he wanders, or...?"

So many children with autism are marvelous wanderers and require careful watching especially at that early age when training is only beginning.

Marvelle

You know, that is the one disturbing aspect of the condition. It seems a game of chance - those children who will be helped enough to find a niche as adults and those who will not. Do you remember in the earlier chapters when Paul went to Microsoft and found those glued to their computer screens? Does my memory serve me? Were many of the Microsoft workers considered to be autistic? That was a strange chapter, I thought. It made quite an impression on Paul Collins!

I think of the man in the book...was his name Cornell, who liked to pick up bits of debris and make them into collages. They might provide him a living...sold as art. But the man who loved to catalog garbage found in the junkyard might not turn this interest into anything meaningful to the world. I'm not sure how to feel about the future for some of the children we've been reading and talking about.

Morgan seems to be getting the attention he needs. Hopefully his strengths will lead him to some sort of a situation like the Microsoft workers where he is able to focus on activities that will be recognized so that he will find acceptance and happiness - beyond his immediate family. You have to wonder about so many others who are either not receiving help - or whose interests are so far out there that they are not recognized or accepted by the rest of the world.

It seems that research needs to be done in several areas -

What causes Autism and related conditions in the brain? What can be done medically, scientifically for those who exhibit these conditions early on? So much is done in other fields of medicine to alter brain chemistry...

For the kids who need therapy and are getting it, that's a blessing, but help seems so spotty, depending on where one lives. Shouldn't there be some central facility where doctors who diagnose the condition can direct parents? Why should my Benjamin's parents become so disatisfied with the help he was supposed to get in Arlington's schools that they decided they would have to work with him at home? What's wrong with this picture?

I had problems with the chapter about Microsoft and other software writers. I have known a lot of them in my life and did not find them as described. I think like any other profession, they have likes and dislikes. Code writers do love what they do, but they also have a wild and funny life in their work..Honest.

Stephanie, do you remember if PC was saying that the Microsoft workers were autistic - OR that they were behaving in ways similar to the them? I seem to remember that he learned from someone at Microsoft that they definitely WERE autistic. That can't be - or can it?

Joan, in answer to your question about the workers at Microsoft. I just went back to check those pages -- 104 -109. I don't think he's saying they are autistic. He was expressing surprise to another employee that when he gave his talk, they were not watching him, although they were in the same room, they were instead watching the company's internal webcast of his talk. The employee then went on to cite instances of strange behavior on the part of the programmers -- like taking their laptops to the symphony.(Reminded me of when Robert Frost came to speak at my college and told some coeds in the front rows to please put up their knitting.) Collins stated that one of Bill Gates' biographers raised the possibility that Gates might have Asperger's syndrome. That was never denied and money was given for an Autism research center at the Univ. of Washington by a Microsoft exec.

My personal feeling is that that's all a bit of a stretch. I'm with Stephanie -- like any profession, you'll have a mix. Two of my kids are graduate electrical engineers, and one of them works out of her home, at her computer all day, for a semi-conductor company -- on programs or projects or what have you. They are both simply normal hard-working parents who try to spend as many of their non-working hours with their families as possible.

I think Collins is perhaps trying to show that there is evidence of autistic type behavior, on the part of adults, all around us. Some, more than others, but still productive members of society. (I almost hate to say that -- on one of the support boards the other day one of the mothers was quite upset because school authorities had come to her home -- she home schools her autistic child -- and said that if she sent him to school they could help him be a productive member of society -- but that's another issue.)

I'll be offline for a few days, travelling east to visit family. The discussion is still open and I'll be back before it's over.

Did Collins leave you with a message? I've learned a lot about autism spectrum disorders, through the book and through your posts. I think what Collins is saying is 1)nobody's perfect and 2)everyone, no matter what the flaws and imperfections in his/her makeup, are fellow human beings and deserve to be treated as such. They have a right to just "be".

It's late and I never finish packing until the wee hours because I'd rather be doing other stuff. But my motel for tomorrow night is 500 miles away, so I have to get to bed. Again, thanks to you all for making this discussion worth while.

Pedlin, Bon Voyage.. WE will be leaving next Monday for two weeks in Scotland and England, so dont know if I will catch you when you are back. I have enjoyed the discussion very much. The book leaves me with mixed feelings. I dont necessarily agree with much of what he says, but do understand the motivation behind the research. Better to research everything and then you better understand your own problems.

Certainly there was extreme behavior on the part of the Microsoft people, the ones who focused on their computer image of Paul rather than the Paul that was standing in front of them; and of whom representative said would only go to and fro work and their apartments. They wouldn't go out at all until the company hired someone whose purpose was to organize outings for them. Whether they are autistic or not, does it matter? They perform well at their chosen profession. Paul writes: "Focus is a weakness and a strength; you might as well make the strengths as strong as you can."

What I believe Paul is showing readers is the variety of behaviors. What can appear eccentric could be autism, and the opposite holds true. Therefore, labels have diminished importance.

Paul shows such diverse ways of being and I do feel he explored what it means to be human. Paul Collins: "All who gaved at Peter's averted eyes discovered something about themselves instead and about what it means to be human."

This is a book that made me consider too, what it means to be human, and the marvelous ways of being human.

This has been a wonderful discussion. Thanks to Jennifer for her generous responses which added so much to the discussion.

Marvelle

Thank you everyone for the great posts. This discussion has been really worthwhile for me.

Thanks to our Leader too of course!

Carolyn

pedln - You did a great job of leading this discussion. There is so much to learn about this puzzling neurological condition, and I enjoyed reading every message that was posted. Autism is a devastating disorder, that takes a mighty toll on the family. Let's hope that we will soon learn the answers to why the numbers of autistic children have increased so dramatically in the past two decades.

Joan and Marvelle, many thanks for your wonderful final summaries. Our hearts are certainly with those who, as Joan said, face an uncertain future, and we hope that they will achieve their full potential. I hope the rest of you have found this discussion as beneficial as I have, a reminder that, as Marvelle points out,labels have diminished importance. It's the human that counts.

This ends the discussion. Thanks again to all of you, to our techies, and a special thanks to Pat Westerdale for all her efforts with the heading, and links.

I'm so sorry that I found this discussion list too late.

I was only just made aware of it from another discussion I participate in.

I've read through all the posts and did want to make a couple of comments.

My son is Autistic. Although children with Autism do not like to be touched, they will cuddle. JJ will throw himself at me, but not at other people. Quite often Autistic children develop an affinity with their main care giver and hence will allow that contact.

It was not always the case with him. He used to push me away frequently but I went into his world. Touching only when he allowed it eventually we built up a rapport. In saying that, even now, he will shrug me off. It has to be at his instigation.

Another statement made was about a lot of children in special schools were Autistic. To a degree this is true. Let me explain a statement from his pre-primary teacher (prior to JJ's diagnosis) when he attended a special needs school. I asked if she thought Josh presented with features of Autism and she "all our children are Autistic to a degree, in that they want routine, the sameness, the predictability of things. You will find majority of children, no matter the disability, will want these things to be able to get through life".

In Australia the statistics say 75% of married couples, with a child with a disability, will break up. The pressure of having a child with medical problems is great.....as said before in this discussion it is indeed a long row to hoe and it is also never ending. I had 3 children with varying medical conditions.

In saying that it is also one of the most satisfying things you can do in your life. I will never forget the first time JJ called me 'Mum' at the age of 4. Prior I was a thing to provide his food and needs etc. He never did comprehend my tears when he uttered such a simple word to me.

My ex-husband once asked me "why I didn't want Josh normal". But what is normal? If I had it to do all over again I would in a heart beat. He is an amazing little boy who has taught me so much.

Thanks

Peta

Peta, Welcome to SeniorNet and to the Not Even Wrong book discussion. I'm so glad you posted, even though the discussion has ended. It will be archived now, and your comments will be helpful to those who read the archived discussions.

If you haven't had a chance to read Paul Collins book -- Not Even Wrong, I do recommend it. As you probably noted, not everyone who read it agreed with all the things he said, but his research is excellent and you may find moments of rapport when he writes about his son Morgan, who is also autistic. It sounds like you already understand some of his message -- just what is normal.

If you want to communicate by email with others from the discussion, just click on his/her name in the message box and there should be a link to that person's email address.

I am currently travelling and visiting family members and my email does not always go through. Therefore I am duplicating this and putting it in the discussion, if it is still open.

The very best to you and Josh and the rest of your family. It sounds like Josh has a very understanding mom.

I hope you will join us in some of our other SeniorNet discussions. Good luck to you.

This discussion is being archived and is now Read Only.