If Asperger’s syndrome has a patron saint, it is Tony Attwood. Born and educated in England, he now heads the Macgregor Specialist Centre in Brisbane, Australia; is an adjunct associate professor at Griffith University in Queensland; and is considered one of the world’s leading experts on AS. To many, Attwood literally wrote the book: The Complete Guide to Asperger’s Syndrome encompasses twenty-five-plus years of clinical experience and research. Having worked with more than 2,000 people (of all ages) with AS, he is a mentor to a generation of occupational therapists and a guru for parents.
Once rarely diagnosed and largely misunderstood, autism — of which AS is a subset, a relatively mild form that generally allows those who have it to function — is now thought to be fairly common. In the 1970s, one in 2,500 individuals might have received the diagnosis; today in the US, it applies to approximately one in 150 children, an increase attributable to better awareness and broader diagnosis. Autism has been reconceptualized from something quite specific into a “spectrum disorder,” a wide arc encompassing classic low-functioning autism — the person locked in his own world — and conditions that are undetectable to the casual observer. Spotting it is akin to birdwatching: you might have to spend many hours before catching a glimpse of a person’s AS tendencies.
I had spoken with Attwood before the symposium. His accent and elocution are not unlike those of C-3PO, the hyper-correct android of Star Wars fame. I told him about my son’s concern about AS: specifically, why does it have to be syndrome ? To J., Syndrome is the name of the villain in the animated film and video game The Incredibles. “Technically, a syndrome describes a pattern that has a detrimental effect on that person’s quality of life,” said Attwood. “Lots of people feel anxious or sad, but it only becomes a depression clinically when it affects that person’s quality of life.” Suggesting that “syndrome” is an improvement on “disorder,” in his book Attwood quotes an American child’s complaint to his mother: “Actually, I’m not in disorder. I am definitely in order.”
Autistic children, in fact, tend to be driven by order. They might line up objects — cars, blocks, dolls — and can be sent into a blind fury if those orderly rows are disturbed. As an autistic or AS person matures, this compulsion for order and systematizing manifests itself in obsessive interests, which often becomes that person’s salvation or damnation. Darius McCollum, a forty-three-year-old New Yorker, has spent a third of his life in prison because of his overwhelming compulsion for all things rail related: in 2005, he pled guilty to grand larceny for attempting to steal a locomotive. He blamed his Asperger’s. Richard Borcherds could have entered Cambridge’s mathematics department at twelve years old. His childhood obsession was building polyhedrons. At age thirty-eight — the year he won the Fields Medal, the mathematics equivalent of the Nobel Prize — he was diagnosed with AS. He is now a math professor at Berkeley.
My wife and I began “explaining” our son long before he was diagnosed. We had little choice: as a two-year- old at the Montessori daycare in London, England, J. was the only child who ran away from his mother when it was time to go home. “He doesn’t seem to like transitions,” one of the caregivers told us. “He doesn’t seem to like transitions,” my wife and I would mutter to each other as we tried to coax him out from under the sofa after he’d been playing at a neighbour’s apartment. He would scream and twist as we carried him — like two screws with an escaped convict — back upstairs to our flat. Once home, he would calm down as if nothing had happened.
He seemed a normal child in many ways. He loved bath time, was a giggling cherub watching a rubber dolphin slide down the tub wall. But there were premonitions of extremes. He absorbed storybooks and could repeat them in their entirety: “The Owl and the Pussycat went to sea in a be-yoo-tee-full peagreen boat . . .” He showed tremendous visual acuity, drawing with originality. He was great with numbers, and had a precocious ability to finish complicated puzzles unassisted. He baffled us.
“He’s sensitive,” people would say.
“He doesn’t do goodbyes.
Comments (15 comments)
Tiffany MacDonald: I enjoyed reading this article. I like that it was written from a father's point of view. Someone who is living the experiences, battles etc and has the experience of knowing about AS. Your son, is a gift to you. He is teaching you things everyday, things you thought you may have already known, things you had no idea about. Everyone is different, we have likes and dislikes, hopes and dreams. Don't give up on those dreams help your child attain these dreams. Stocking shelves or working in the mail room may be great for some but being a Doctor or a Scientist is not that far of a reach for some individuals on the spectrum. They just need the proper guidance and direction. We need to educate people in the "real world" about AS and advocate for them, as they may not know how to, but eventually with enough teaching they too will be able to advocate for themselves. We need to let people know that these children are the future. If you and I didn't dream and have hopes and goals and obtain those dreams and goals where would we be today? Keep advocating and teaching people that may cross your path and soon you will see that those mothers of the young children don't move when they see J coming they actually greet J with a smile and a hello. August 11, 2008 16:05 EST
Anonymous: terrific piece. August 18, 2008 15:48 EST
Sarah Faulkner: Excellent article! August 26, 2008 02:35 EST
Anonymous: Terrific article. I have a J. He presents just like him. Thank you for giving me the idea that I should think like him in order to understand him,so that I can help him and reduce my frustration levels. August 29, 2008 20:27 EST
John Christensen: What a beautiful article. My son Lane is 9. We have been struggling for a year on how to help him and how to find a way, some plan to make a comprehensive difference. I live in Illinois but could relate 100% to your struggles and your efforts. Thank you for the publication. I found it quite by chance.
JC September 02, 2008 18:16 EST
Caro: I came across a link to the article on an aspie site.
I think it is great that you are trying so hard to understand your son's experience. I am in my 50's and have just been diagnosed with Aspergers. I believe it would have made my life so much easier if I had known earlier that I had this condition and could have taken some steps to remedy the social deficits rather than just thinking about things on a single axis of right/wrong. Knowing that I have Aspergers has also immediately improved my relationship with my 18 year old son whom I believe also has the condition.
The one thing I would disagree with is that work in a mailroom is a bad outcome. Work that a person can do adequately and enjoy is in my opinion a good outcome regardless of the social status of the job. Because of variable abilities lots of us are able to get qualifications that we are not able to utilise in a social setting. September 05, 2008 12:56 EST
Anonymous: All my life, and I'm now in my 70's, I have given my father a bad rap. He was such a difficult person, self-centered, socially inept, unable to achieve any real success in life, and he made our lives such a misery with his violent temper. In one of my earliest memories of him, we are at a construction site (he was an engineer), I am a little girl of about three, and he is explaining and demonstrating to me, in great detail, how aggregate is graded to constuct an earth fill dam.
I am only now beginning to realize that he must have been autistic.
I hope your article will add to the general knowledge and understanding of people like him. Knowing why a person behaves as they do makes it easier to forgive them, at least in hindsight. I'm only sorry that it has taken me this long to find an explanation for his behaviour. September 05, 2008 15:50 EST
Anonymous: What an excellent article! As you noted, AS children experience significant social difficulty, and usually rate low in empathy as compared to their peers. In this cruel world, what place should we have for those who ignore the needs and feelings of others?
Nowhere. Let em stay and reproduce their vile offspring in Silicon Valley and Redmond and hope they dont leech out! September 07, 2008 19:51 EST
Cathi: This is an incredible piece. As I read it, I thought how very much he could be describing my own son, 12 years old and diagnosed with Asperger's. My son is gifted and spectacular in what he does, and sadly, when he loses it, he does that spectacularly too. We know that if we just reduce the pressure, don't be too hard on him and be clear in our expectations we have a boy who shows the promise of great things. Send him to school with the noise and the bullying and school staff who pay lip service to IEPs and supposed accommodations, we have a smart kid who has huge meltdowns. It doesn't have to get to that point but it does. Still, for every bad day there are ten that show me the glimmer of what he can become, if only he makes it beyond the social turmoil of the school years. That to me is the big question: will he give up on us because he thinks the world has given up on him? I truly hope not, it will lose something special if ever it comes to that. September 10, 2008 05:59 EST
Anonymous: To Anonymous Sept. 7, 2008 19:51 pm:
You don't need to worry about them "leeching" out of Silicon Valley. From the tone of your response the unempathic people have already leached out to where ever you are. September 10, 2008 09:35 EST
Cheryl: I came across this article while researching information on Aspergers. I have an almost 3 year old grandson. I am suspecting he might have Aspergers Syndrome.
As a baby he was hard to hold. He would arch his back and not allow you to hold him sitting down for long. He was fascinated with the ceiling fans. He did not like for you to take his picture and would look away. We could never get him to wave bye bye and does not make eye contact all the time. He seems extremely intelligent. He talks with perfect grammer and if you say a word that he has not heard, he will repeat it until he says it correctly. Lately he has shown extreme interest in Big trucks and equipment. He has all the toys, and will pick out a DVD about one and watch it endlessly. He has never seemed to like watching TV. He goes to an in home daycare and has a hard time playing with the other kids and tends to take away toys and not share.
What do you think? September 15, 2008 09:07 EST
Cheri: Lovely piece of work - you described my life as an AS parent to a remarkable 12 year old girl - and as the relative of an assorted variety of eccentrics - thanks for the laugh - Cheri September 20, 2008 19:38 EST
kittenlegal: What a lovely, well-written article.
touches on the myriad of emotions this evokes in parents, like relief for the diagnoses and then sadness for the permanence of it.
My 11 year old is an Aspie.
He has been getting better at socializing.
I think it's a combination of his hard work, counseling in school, and nutritional therapy (Omega 3, B6, magnesium, and no gluten or casein).
Even with his social gaffes, I know I have been blessed with the sweetest, most clever, child I could have imagined.
Kitten September 29, 2008 14:31 EST
Anonymous: People wishing to learn more about autism spectrum disorders should feel free to listen to the free Autism Spectrum Podcasts offerred by Midnight In Chicago at www.mic.mypodcast.com October 27, 2008 23:50 EST
Pati: Dear Cheryl,
You described my son to a dot. He just turned 4 and he always had a fascination with fans and wheels (anything that turns). Then with big trucks and equipments but his love a wheels was still there and how the trucks work. After that it turned to airplans and turbines (because they spin). He will get a dvd about them and repeat it many times. He likes watching the same cartoons all the time (dora, max and rubi...). He doesn't like tight clothes, clothes with buttons...always been very picky with his clothes. He prefers to wear piyamas if possible. He makes some eye contact sometimes but our conversations are merely about airplanes, wheels, cars and how they work..sometimes about school and how mean his teacher is. He talks about that and may respond to other quesitons but not elaborate. He hugs and kisses but not with a lot of passion. He talks a lot when playing with his little cars or airplanes but I think that is normal. He has lots of problems in public school where he is constantly being screamed at for not sitting on the carpet for the 45 minutes that is required. So now we, the parents, have to go in with him every day to school and help because he get "violent" when he throws a tantrum (when he doesn't get his way... looks like a 2 year old getting upet, not really violent because he is not hitting but making mimics of kicking). Sometimes I think he is really spoiled but others, I can see some of the traits mentioned for AS like talking more than listening to schoolmates. Does he have it? Is he too young to be diagnosed? Most probably, but what we started doing is educating ourselves on how to make things easier for him until he can finally be diagnosed with AS or that he is a strong will little boy. We are also cutting tv to almost nul and everything he used to play with, we are changing it so he can learn new things. We are also teaching him to have more patience and wait for us, for example, to finish eating before leaving the table. He has been learning fast.
Hope this helped.
Pati November 16, 2008 18:44 EST