It wasn’t until we moved back to Canada, had a second son and then a third, that we realized our eldest was actually another kind of person. He didn’t seem to see other people as people — not even his own brothers. He was interested in them, but impassively, objectively. When one of them was hurt and was being comforted, J. would walk over with a picture book and ask to have something explained, oblivious to both the suffering and the nurturing before him. “Don’t you see that your brother is upset?” “Why is he crying ?” “You didn’t hear him fall from the bed? You were sitting right there.” It was another matter altogether if one of his brothers disturbed his equilibrium: an accidental bump in the hallway resulted in extreme reprisal.
In the summer of 2003, my sister-in-law, a fellow journalist, asked if we had ever heard of Asperger’s syndrome. We had not, and we were suspicious of it — no doubt another maladie du jour. She had mentioned J. to a friend whose son had been diagnosed. There were similarities, such as lack of eye contact, a sophisticated vocabulary, and a monotone voice that typifies “the little professor syndrome,” as AS is also known. But not enough to convince us, or for us to realize that some of J.’s tics were in fact “stimming” — repetitive, self-stimulating behaviour.
Sloman’s office is much like that of other distinguished academics: books stacked haphazardly or strewn about the floor, an embarrassingly old computer. He was preparing a PowerPoint presentation about AS, and on the screen was a list of responses to a diagnosis. I suggested he add “parental anger.” He looked up, his face showing the signs of a career diagnosing people like J. and taking questions from people like me.
But AS only entered the diagnostic nomenclature in 1994, Sloman told me in a later meeting. “I began to get referrals and to make the diagnosis maybe five, six, or seven years ago,” he said. “It always takes a few years to percolate. It’s exploded over the past few years.” Difficult as it is to consider one’s child part of an explosion, my initial feeling was relief. In hindsight, I see that relief as a reflexive impulse engendered by our faith in medical science: great, now we can fix him.
While a relatively new addition to the autism lexicon, AS was first identified more than sixty years ago, in the research of two Austrian psychologists working with autistic children in different parts of the world. It happened almost simultaneously: first, when Vienna clinician Hans Asperger coined the term “autistic psychopathy,” and then through the work of Leo Kanner, who had fled Nazi Germany for the academic sanctuary of Johns Hopkins in Baltimore. Asperger wrote his pioneering paper in 1944, but “Die ‘autistischen Psychopathen’ im Kindesalter” (“Autistic psychopathy in children”) didn’t gain broad currency until 1991, when it was translated into English by Uta Frith, a psychologist at the University of London’s cognitive development unit. “One can spot such children instantly,” Asperger wrote. “They are recognizable from small details, for instance, the way they enter the consulting room at their first visit, their behaviour in the first few moments and the first words they utter.”
Reading Asperger’s case studies provides parents of an Aspy child with a distant mirror. “Normal children acquire the necessary social habits without being consciously aware of them, they learn instinctively. [Autistic children] have to learn everything via the intellect,” Asperger surmised in a resonant description that has been picked up by contemporary clinicians. In his acclaimed book The Explosive Child, Ross W. Greene analyzes an everyday encounter in the schoolyard. A boy approaches another boy, smiles, slaps him on the back, and says, “How’s it goin’?” An autistic or AS brain might interpret the situation as follows: What does the smile mean? How hard was the slap? Has this same boy done this before? How hard was the slap compared to earlier slaps? Does he slap other boys? And that’s the first step; the Aspy child’s own mental and physical response has yet to be formulated.
In the mid-1980s, Frith, working with Simon Baron-Cohen, then her Ph.D. student, and another scientist, Alan Leslie, developed an analysis called “theory of mind.” It refers to the ability to put yourself in someone else’s shoes, a skill, writes Frith, that “enables us to predict other people’s behaviour. Thinking about what others think, rather than what is going on in the physical world outside, is essential for engaging in complex social activity, because it underpins our ability to co-operate and to learn from each other.” In autistic individuals, theory of mind is either disabled or entirely absent, which makes them very frustrating companions. Neurotypical people, programmed for social interaction, tend to dismiss those with autism or AS as anti-social. But to say people with AS have difficulty socializing makes it sound as if they don’t care for cocktail parties. Similarly, when AS children attempt to interact with their peers, failure and rejection can amplify low self-esteem. They give up trying, because it only makes them feel worse. Aspy children are not always happily adrift in their own little bubbles; like most everyone else, they yearn for kinship. Unfortunately, it tends to be on their terms.
The social world is intuitive, and its conventions so ingrained in collective behaviour that we barely notice them. Humans are profoundly social, and when an individual fails to fit in, others — no matter how modern, savvy, kind hearted or well intentioned, empathic or sainted — tend to react negatively. We are hard wired to identify and isolate aberrant behaviour, any signs that run contrary to the group. Knowing this, parenting Aspy children can be a minefield. At what point in a developing relationship — with a new neighbour, the parent of a potential friend, a soccer coach — do we explain J.? The first meltdown? The second unbridled criticism of a teammate’s failings? Should we have to explain at all?
Comments (20 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
Anonymous-Help: The article provided good insight as my 4 1/2 year old son shows traits of AS (OCD, routines dependent, repetitive phrases, social distance unaware, trouble falling asleep, highly interested in books, sang words before speaking them). He started JK in September and the description "he seems different from others socially" has come up.
We're coming to terms with it and moving towards steps for diagnosis. In the meantime as I educate myself, any books on recommended strategies would be helpful - thank you! Specifically, ones that address: Do I take the trains away gradually, do I move towards no TV and no computer?
I can't help wonder "Will he ever go to university?" and so I think joining a support group would help with the anxiety, guilt and exhaustion I've experienced over the last several months - close to two years - in trying to figure out what this is and what to do. December 05, 2008 08:42 EST
Anonymous: Hi:
Thank you very much for writing about our "special children". My son was 2 and some odd when he was sequencing letters, reading like a fiend soon after..but at play school was afraid of the children. The early childhood workers were right on the ball with concerns, but we got sent away from our MD twice, because he seemed so normal and intelligient in public. He was assessed when he started throwing things in class at JK. Since then we have worked with some amazing people, peppered with expensive and unpleasant experiences with people who cannot deliver and with the shadiest of credentials.
Your J sounds like ours who is now 8, I have taken to repeating myself ad naseum appealing to their ability to rationalize...to get the hang of social rules..so far performance at small group gatherings is great. I have even noticed social cuing, holding back recently. I think its important to understand how they think and react to help all to cope at home...thats what we have done, but unfortunately, as I say to my spouse ..the world will not be his parents..so, at least for my son, we keep plugging away to fill up his mind with a catalogue of social rules ( they all have amazing recall). I have taken him everywhere to see how he reacts and works to alleviate his anxiety with each situation...subway crowds, noisy supermarkets etc...de-sensitization seems to work, and build realization of triggers and how to cope with them. Even if it means I have had to endure stares at Indigo, and restaurants. He can now sit through a noisy restaurant, not fidget and read out loud in church, tolerate a crowded bus, and apologizes profusely for bumping into people. I wish there was someone who could provide a social-coach service to chaperone these kids at school recess, gatherings etc, when parents (who work) cannot do constantly. ...to capture every teaching moment. These children are highly intelligient, but not creative, so the experience of having done or seen something (at least for my son) seem to have an incredible teaching effect. I have been in search of an overnight camp catering specifically to Asp kids ..for a truly intense social challenge. It might be a disaster...but in my experience, they always grow from it...just at a slower rate, and more dramatic fashion, than neurotypical children.
I am not sure where my son will end up professionally..but my one goal is for him to be happy, have people that care about him as a friend, and hopefully, a spouse who will understand that he is a phenomenal, wickedly funny, intelligient and warm human being who is challenged by his lack of control over his brain challenges.
For Cheryl: You are very astute - I would be concerned (as a health care professional), the current message is the sooner the intervention, the better..so if you can get at least some input from a developmental pediatrician or a speech pathologist ...think you can work ahead, until people feel the label is appropriate. ..you have nothing to lose. This is from the perspective of a parent who was sent away for 2.5yrs....its a humoungous amount of time for the growing brain...and I always wonder if things would have been a little bit different, perhaps less traumatizing for all in the long run.
Thanks again, and good luck to all parents who struggle with these children who have so much to offer and who deserve more then the shallow stares and comments from people who themselves could use help such as Mr/Ms.Anonymous.
December 14, 2008 08:37 EST
LL: It is like looking into a mirror in reading about other peoples experiences. The puzzle pieces fit perfectly only after our 7 year olds younger brother was diagnosed with a language delay and ASD. To have an elder son who is truly brilliant and thoughtful in one moment turn into an annoyed and frustrated toddler is heartbreaking. He spends time telling his brain aloud to think kind and happy thoughts. To compound his situation he is profoundly deaf in one ear. I know from my heart he will have an amazing life, it will be his life. We as parents are ovewhelmed, proud, amazed and scared all in the one breath. My boys have us and each other . . . for a start anyway. Thank all for sharing. December 23, 2008 03:29 EST
Anonymous:
share our story:
A insomnia frog:A insomnia frog
January 02, 2009 09:30 ESTA Joyful party:A Joyful party
Bear in eggs:Bear in eggs
Big alligator:Big alligator
Birds and bear:Birds and bear
Carving and desert:Carving and desert
Chickens and ducks:Chickens and ducks
Clever crow:Clever crow
Crystal ball's dream:Crystal ball's dream
Hungry fox:Hungry fox
Mom's birthday:Mom's birthday
Only one goal:Only one goal
Piglets temper:Piglets temper
Small white and black pig:Small white and black pig
The camel is angry:The camel is angry
The old dog:The old dog
The poor and the rich:The poor and the rich
Broken dreams:Broken dreams
The little princess:The little princess
Dance bear:Dance bear
spring:spring
The little princess:The little princess
Three rats:Three rats
A selfish giant:A selfish giant
Anonymous:
What do you
have in your closet?
How long ago
was it when shoes were just footwear? You threw them on to go play out in the
back yard, or down on the playground. Today, however, having a pair of sneakers
has taken on a whole new meaning, especially when dealing with sports shoes.
What has really made the sneaker culture huge is the sport shoe industry, with
Nike and Adidas pulling up the front. These sports icons have been worn and
styled by not only top athletes, but by people in the music industry.
They say that it was the Nike Dunk
that started it all off. In 1985, Nike brought out the
Nike Dunk.
Originally these sneakers meant for the college community of basketball
players. Instead, this style of sports shoes started the sneaker sub-culture.
Although this style of sneaker was designed to be used during high intensity
basketball games, the spotlight quickly turned to the fashion of wearing them,
what they looked like, and which ones you owned. Twenty years later, Nike has
brought the Nike Dunk back on
the courts with all its retro style and performance.
But why stop
with basketball shoes? In 2000, Nike decided to jump into the skateboarding
scene with the new Nike Skateboarding product line.
With
Nike SB has come the
Nike Dunk SB. For years, before
skateboarding came out from the underground scene, skateboarders utilized the
rugged design of basketball shoes. Nike decided to capitalize on what Vans and
DC shoes had been monopolizing for years, and take what was already an amazing
sneaker, and fit it into the needs of skateboarders. What the
Nike Dunk
SB brought in the way of performance was extra-padded tongue and their
patented Zoom Air insole. In the way of style, this sneaker has already come out
with six series, and names for them like Grip, Forbes, and Vipers.
Another blast
from the past would be the Nike Air
Force 1. These sneakers first came out in the early 80’s. And like the
hip hop culture, their popularity grew. However, this band did not reach their
full fashion peek until 2002 when Nelly released the song “Air
Force Ones”.
The other major
sports shoe brand is the Adicolor
Shoes, an Adidas Original. The design became so popular because the
plain white canvas was adaptable by painting, drawing, and spraying on your own
personal design, and even accessories were sold to help you in your creativity.
In 2006 they pushed the envelope further with a new color series using artists
and designers from all over the world.
Another huge sneaker that was popular with the hip hop world was the
Adidas Superstar. A very raw
and controversial Hip Hop group that helped skyrocket the
Adidas
Superstar to stardom was Run-D.M.C. This cutting edge group was known for
wearing their Superstars out on stage, and even wrote a song dedicated to them
called “My Adidas”. Whether its Nike or Adidas, clean out that closet, dust off
your old sneakers, and get into the game.
January 02, 2009 09:36 EST