"I've never seen a 2-year-old with an ability to concentrate like David," our day care provider told us when our son was little. "He's so smart, it's almost scary. He concentrates so hard on what he's doing that you can't distract him from it." Unfortunately, that meant that when she tried to get him to do anything else -- especially art projects -- he'd pitch a long, loud fit.
That wasn't news to me and my husband. Our son had definite opinions and interests from the time he was an infant. Only a certain extra-soft silicone nipple on his bottle, no matter how hungry he was. Either the silver rattle or the red-white-and-black one, but no others. But he could stare at his book of black-and-white line drawings all day, even at 8 weeks old.
As David grew older, he would both baffle and amaze us -- and those around us. At 3, he knew by heart the license plate numbers of all our neighbors within a two-block radius. By 4, he'd memorized detailed plot lines from books and videos, and would recite them -- over and over and over again. Halfway through kindergarten, David could read as well as many kids in the upper grades.
But our brilliant little boy could be difficult as well. Meltdowns were a fact of life. Hours of inconsolable crying as an infant evolved into horrendous temper tantrums as a toddler and preschooler. Every child has tantrums, but David's were longer and more extreme than most, and seemed to come at the tiniest provocation: Turning off a video that he had already seen a dozen times; giving him the red sippy cup when he wanted the blue one; having to walk down the block when it was too sunny outside; trying to coax/cajole/force him to eat any food that wasn't on the very short list of what he considered edible.
Advice from child care experts (reinforce his good behavior and ignore the bad) didn't work. Advice from family (give him a good swat on the behind when he acts up) only led to his adding hitting and kicking to his tantrum repertoire. Sometimes it felt like we were walking on eggshells, trying to avoid the many things that would set him off.
It wasn't David's tantrums, though, that kept him from making friends. He just wasn't particularly interested in other kids. Oh, he'd sometimes find one other child whom he'd build a relationship with and be fiercely dedicated to, but he could be in the same day care class with 10 kids for two years and not learn their names.
He couldn't be bothered, unless they wanted to listen to him talk about Superman (or another topic of the moment) for hours on end, and allow him to dictate exactly what game they'd play. Usually the game involved action figures, and David would have to script the entire process, typically with dialogue lifted from a comic book.
David's pediatricians kept saying he was developing normally -- but then, as their practice grew, we never seemed to see the same doctor two times in a row, so how could they really evaluate his problems? If only we'd known then: David was exhibiting textbook Asperger's symptoms.
A Brain Wired Differently
Psychologist Tony Attwood, considered one of the top experts in the field, likes to describe Asperger's as "having a brain that's wired differently -- not defectively."
That's more than just an analogy: Last fall, London scientists published findings that showed there are significant differences in the connectivity of nerve cells in the brains of people with Asperger's. The more severe the symptoms, the more abnormal the MRI scans.
By definition, people with Asperger's, which is considered a form of high-function autism, are of at least normal intelligence. Many, like my son, are gifted. But they act, and interact, differently from their peers. Typical symptoms include: intense interest in one or two objects; abnormal speech content, often with very advanced vocabulary; trouble interacting with peers; repeating certain activities; and resisting change in routine.
The different wiring underlying the condition, says Attwood, whose book "Asperger's Syndrome" (Jessica Kingsley Publishers, 1998) has sold more than 150,000 copies, means that people with Asperger's are "going to have difficulties as children in making friends, in reading body language and in the art of conversation. They can be somewhat pedantic and poorly organized. But they may have a special interest in a particular area, with encyclopedic knowledge and a lot of skills that are self-taught.
"Some have sensory problems, that they are upset by certain sounds or textures. And some can be a bit clumsy for catching and running skills. But they can have a very original way of thinking, often combined with a dazzling memory for facts and information."
That means that some things the rest of us take for granted, such as the social "skills" of reading a person's facial expression or body language, may have to be taught to an "aspie," as many in the Asperger's community call themselves.
On the other hand, that deficit is often balanced with intuitive abilities in areas such as science or art that are beyond most of us "neurotypicals." Speculation is that many of the world's great thinkers may have had Asperger's: Thomas Jefferson, Wolfgang Amadeus Mozart, even Bill Gates -- all brilliant, determined thinkers who may have obsessed over their particular areas of interest while ignoring social niceties.
The high intelligence, technical abilities and impressive vocabularies of many aspies have led to several nicknames for the disorder: Geek Syndrome, Nerd Syndrome, Little Professor Syndrome. But at a December conference in Richmond attended by more than 300 parents and teachers of Asperger's kids, Attwood suggested another name: "Frank Sinatra Syndrome": As in, "I Do It My Way."
The Little Prof at School
David most definitely has to do things his way -- and unfortunately, that's not always the teacher's way.
At Montessori school, while other children happily moved from station to station, David took to wandering the perimeter of the classroom -- all day, if he could get away with it -- absorbed in his thoughts.
Writing with a pencil or crayon "hurt," and at age 5 he still wasn't predominantly right- or left-handed. At recess, he complained that the other children hit him, but his teacher said it was usually minor, accidental brushes against him.
At the recommendation of a social worker friend, we took David to an occupational therapist to be evaluated for sensory integration problems. The diagnosis: David had sensory defensiveness -- an over-sensitivity to light, noise, tastes, smells and textures -- along with motor coordination problems.
A year of occupational therapy tamed David's tantrums to a large degree, and day-to-day life became less stressful for all of us. Transferring him into a public school -- where there was more structure and less emphasis on sensory activities than in Montessori -- helped, too.
But sensory integration wasn't "the" answer we'd hoped for. David still wasn't connecting with other kids (the ones he called "best friends" were just other kids on the block who smiled and said hello to him), and life at school was continuing to deteriorate.
By first grade, David could tell you endless complex stories about superheroes traveling through "inter-dimensional portals." But he'd hide under his desk and cry when given an assignment to write three sentences about his favorite pet.
When David began developing tics -- first an odd blinking, then a nose scrunching, and soon an occasional funny walk (step, hop, step, pause) that he said he "couldn't help" -- the pediatrician referred us to a neurologist at Children's Hospital in the District. Because a tic disorder isn't life-threatening, we were faced with a several-month wait for an evaluation.
In the meantime, I decided to do more research on my own. I had already learned a lot about sensory integration, but could the tics be connected in some way? I was floored when a quick search for "sensory integration and tics" produced more than 2,500 hits -- most on sites related to autism or a related disorder I'd never heard of: Asperger's syndrome.
It would be seven months before we could get in to see a psychiatrist for an official diagnosis, but my husband and I knew as soon as we read the list of symptoms that we'd found our answer.
That approach wasn't in any way unique. At a recent parent support group meeting I attended, more than half the moms there said they found the diagnosis on the Internet first -- then took it to the doctors.
I'll Have the Usual
Ironically, one of the things that sets Asperger's kids apart initially is their insistence on sameness. Many Asperger's kids, for example, can't tolerate any changes in routine: They want the same clothes every day, the same food at every meal, and pity the poor teacher who has to change the class schedule without notice. Mess with their agendas and these kids can have major meltdowns.
Actually, eating problems can come both from the aspie's desire for sameness and from sensory sensitivities. An amazing 10-year-old boy from England, Kenneth Hall, wrote a book about what it is like to be a child with the condition: "Asperger Syndrome, the Universe and Everything" (Jessica Kingsley Publishers, 2001). In it, he says: "Another unusual thing about me is that I definitely can't take most foods. Eating is one of my biggest difficulties. I can't explain why I have this difficulty, but for me this is the worst thing about [Asperger's syndrome]. . . . Most food has a horrible texture. Like mashed potato, for example. It is like paper which has been soaked in water. It feels like papier-mache which might go into every crevice of my mouth like a sculpture." What Kenneth likes to eat most is Red Leicester cheese in a bowl, which he has every day for lunch. He likes to grate it himself, so he can be sure it will be exactly the right consistency.
The good news for parents of aspies -- many of whom get criticized by well-meaning relatives for not giving the child a varied diet -- is that Attwood says many aspies outgrow their eating difficulties, at least to some degree.
Two weeks before Christmas this year, David told me he had to go out with his dad for a little while and I couldn't come. When I asked him where they were going, he didn't say, "It's a secret." Instead, my 7-year-old told me "I'm sorry, Mom, but I'm just not at liberty to divulge that information at this time."
That kind of comment from a child tends to charm the heck out of grownups, but it can baffle other kids.
Words, for people with Asperger's, have very literal meanings. Author and adult aspie Liane Holliday Willey -- who has a doctorate in education with a specialty in psycholinguistics and learning-style differences -- says that even after years of therapy, she still often can't tell whether someone is joking with her or teasing her or angry with her.
"I'm really not quite clear with words, what the intent is. I can't tell if they're being straightforward with me. If someone asks me 'How are you doing today?', I'm going to tell them. And I've been told over and over again, 'They don't really care.' " But that doesn't make sense to a person with Asperger's. Why would someone ask a question they didn't want an answer to? That literal interpretation -- as well as difficulty interpreting body language and facial expressions -- can make an aspie not just naive, but vulnerable, and Willey cautions parents not to let their children become the prey of bullies or worse.
We experienced that firsthand when our son was in first grade and he liked to spend recess walking alone, thinking about his stories. Lots of aspies need their "alone time," as David likes to call it. In David's case, a bully started following him around and snatching his new glasses. "But Mom, I just don't understand it. He hits me but keeps saying, 'I'm your friend, David. You don't want to get your friend in trouble.' Why does my friend hit me?" It took several nights of tortured coaching before we could convince our little guy that this bully wasn't his friend -- even though he said he was -- and that he had to stand up to him and get a teacher involved.
In many ways, the most interesting aspect of Asperger's Disorder is the child's (or adult's) focus on an all-consuming interest. If they're lucky, it's an interest common among their peers. My son, for example, studies Spider-Man as if he were working on his Ph.D. It's not unusual to find him with four or more books spread out, because he's comparing and contrasting how Dr. Octopus has been portrayed across the years, especially minute changes to his appearance. He can manage to turn almost any conversation back to the topic of Spider-Man. And if he can't, that doesn't especially bother him -- he'll just keep talking about Spidey, whether you're listening or not.
(In fact, I can verify that he will continue talking about it even if you put your hands over your ears and cry, "No more! I cannot stand to hear one more word about Spider-Man today!" He'll just smile sweetly and say: "I'm sorry, but I just can't help it. I just love to talk about it so much!")
Often, the focus of a child with Asperger's is a topic that's popular with other kids -- cartoons, video games, computers and animals are all very common, says psychologist Sally Ozonoff, co-author of "A Parent's Guide to Asperger Syndrome and High-Functioning Autism" (Guilford Press, 2002). The difference is the intensity of their interest: The aspies want to talk/read/think about nothing else but their special interest (the clinical term for this is "perseveration"), and can resent activities that take them away from it.
Donna Cravey of Cross City, Fla., says her 12-year-old is now totally into Pokemon, but before that he was obsessed with RV campers, specifically the slide-in kind that fit on the back of pickup trucks. He had downloaded and printed schematics and designs of dozens of different RV trailers and carried them around on a little clipboard, as well as drawing and designing new ones of his own.
A focus on things mechanical is also rather common because aspies tend to have a good understanding of mechanics and physical sciences, says Ozonoff, who sees patients at the M.I.N.D. Institute, a national center for autism spectrum disorders at the University of California, Davis. Ozonoff has treated four children obsessed with vacuum cleaners. Their knowledge base was amazing: "I'd tell them, 'Oh, I have a Hoover Elite 2000,' and the child would recite every detail about that vacuum, even though it was now out of production."
Other children Ozonoff has seen had interests in very specific parts of history. She currently has a patient who talks constantly about the Greco-Roman War. He's 9.
The older the child is and the more unusual his interest, the more difficult it can be for a child to fit in. The 16-year-old who talks incessantly about Ford Mustangs comes across as eccentric. The one who talks constantly about game show hosts or teeth or deep fat fryers (all real examples) is going to be called weird.
Some aspies grow up to be very successful in their fields of interest, especially computers or mathematics or a particular academic pursuit, says Attwood. (Remember that computer science major at college who would get so caught up in programming that he'd forget to sleep, eat, bathe or go to class? He's a millionaire now; he may be an aspie.) Others, unfortunately, may have difficulty getting past the job interview and keeping the job -- not because the employer questions their honesty, integrity or knowledge, but because of their lack of interpersonal skills. What makes the difference, says Attwood, is the severity of their case of Asperger's and the amount of intervention they get.
A Different Ending
It's been nearly a year since we "discovered" Asperger's syndrome, and it feels like we are finally pulling together the variety of services David needs.
While other parents of aspies often tell horror stories of dealing with school systems, we've been fortunate. Matching the right teacher to the Asperger's child is critical, according to autism expert Carol Gray, director of The Gray Center for Social Learning and Understanding in Jenison, Mich. She says the best teacher for an aspie child is affectionate, unassuming, has a sense of humor and, most important, has a lot of flexibility. We've been lucky this year to get a teacher whom David adores. Last month, the school agreed to provide several hours per week of special services to David, and a county-wide expert on Asperger's is being called in to evaluate what other services might be appropriate.
Outside school, David has started going to a social skills group once a week -- a form of therapy for kids with social communication problems. A psychologist at Children's Hospital who specializes in Asperger's has agreed to begin behavioral therapy for David (as well as training for my husband and me, so we can implement her plan at home).
Meanwhile, David remains unaware of his Asperger's diagnosis, although he understands that there are areas where he needs help, and that's why he's going to have therapy and extra assistance at school. He's generally a very happy child, other than his rather fierce resentment over being allowed to play video games for only 30 minutes per day. He's made a close friend in school this year who invites him over to play at least once a week, which is a wonderful new experience for him.
In preparing this article, I've had the unique opportunity to ask some of the world's top experts on Asperger's, "When do we tell him?" Their answer -- "When he asks, 'Why am I different?' " That's the day we'll sit him down and show him this article and explain that, yes, he's a little different, but he's not defective.
David might need extra help in some areas others take for granted, but he also has capabilities that most of us don't. His incredible determination and thirst for knowledge will take him far, and all the therapy isn't designed to fundamentally change him, but to help him navigate through the world we "neurotypicals" have designed. I have no doubt that he'll find his own way to contribute to it.
In the Washington area:
* The Autism Program of Virginia: www.autismva.org
* Guide to Therapy Groups for Children, Adolescents and Parents (the most comprehensive list of social skills groups in the D.C. area): www.groups4kids.com
* Jewish Social Services Agency (offers Asperger's-specific therapy for individuals of any religion, as well as a parent support group): www.jssa.org
* Maryland Asperger Advocacy & Support Group: www.aspergers.org
* The Pervasive Developmental Disorders Clinic at Children's Hospital: http://www.dcchildrens.com/programandservices/Program_PervasiveDevelopmentalDisordersPDDClinic.asp (or, go to www.cnmc.org and search for "Asperger")
* Asperger Syndrome Coalition of the United States: www.asperger.org
* Autism Society of America: www.autism-society.org
* Future Horizons: www.futurehorizons-autism.com
* Liane Holliday Willey: www.aspie.com
* Online Asperger Syndrome Information and Support (OASIS): www.udel.edu/bkirby/asperger/
* Tony Attwood: www.tonyattwood.com
* Gray Center for Social Learning and Understanding: www.thegraycenter.org
Lisa Barrett is a Washington area freelance writer.