ASD

This is The Squirrelly, looking you in the eye.

If you met The Squirrelly in person, this is not something you’d likely see. As you entered the room he might glance briefly in your direction, but would then return to whatever he was doing before and probably ignore you thereafter. Any effort you made to catch his eye would almost certainly be in vain.

The technical name for this behavior is “gaze avoidance,” and it is one of the symptoms of autistic spectrum disorder (ASD). The Squirrelly was diagnosed with ASD two weeks ago.

The possibility of ASD was first suggested by his daycare provider in August. The Queen was worried; I was skeptical to the point of dismissiveness. This was the same woman who, just three days after he took his first steps, urged us to take him to a foot doctor because he “walked funny.” I assumed that this was just another overreaction on her part, and one (like the “walking funny” comment) that she would never mention again. Instead, she brought it up several more times over the course of the week. It was clear that she was sincerely concerned.

Of course we’d noticed that The Squirrelly was idiosyncratic — his phenomenal ability to tune us out, his reluctance to adopt gestures such as hand clapping, the (slight) delay in his speech — but we’d just chalked it up to his personality. Our only real worry was over his intermittent response to his name, which had us wondering if he might have a hearing impairment.

But we’d never seriously considered the possibility of autism. Still, The Squirrelly had an appointment with his doctor scheduled for the following week, and we figured it couldn’t hurt to ask.

The pediatrician noticed the same things the daycare provider did, foremost among them his lack of eye contact and seeming indifference to her presence in the room. She suggested that we enroll him in the Toddler Assessment Project, a University of Washington study to identify ASD in children as young as eighteen months. We did so immediately.

The clinicians at the UW Autism Center conducted interviews with The Queen and I regarding The Squirrelly’s behavior, and we brought him in for observation on a number of occasions. After the fourth such visit they had seen enough to officially classify his symptoms as those of autistic spectrum disorder.

* * *

Autistic spectrum disorder” is an umbrella classification for a group of closely related pervasive developmental disorders, including autism, Asperger’s Syndrome, and (arguably) attention-deficit hyperactivity disorder. The word “spectrum” is in recognition of the fact that people with ASD vary widely in their impairments.

Of the five major areas that characterize ASD — social impairment, language impairment, imaginative impairment, repetitive adherence, and sensory integration dysfunction — it appears that The Squirrelly’s symptoms lie mostly (and perhaps exclusively) in the first three. He doesn’t engage in rocking or arm flapping, doesn’t have affinities or aversions to specific textures or sounds, and doesn’t insist upon sameness and routine. That’s good news, as these things go. His physical development is, if anything, a little ahead of the curve. And while it’s really too early to start making predictions about his cognitive skills, he appears to be right on track.

But his “gaze avoidance” tendencies are unmistakable, and he makes very little effort to communicate with others. He knows dozens of words but only uses them for labelling. Show him a banana and he’ll say “banana,” but if he wants a banana it apparently doesn’t occur to him that saying the corresponding word to us might provoke a response. When he is in the company of other toddlers he plays around them rather than with them. And he rarely engages in imitative play.

It seems likely that he is high-functioning. One possibility is that he has Asperger’s Syndrome (AS), which is a relatively common form of ASD. People with AS have normal to high intelligence but great difficulty with social behavior. There’s probably someone in your company’s IT department with a touch of Asperger’s. Albert Einstein and Bill Gates are both suspected of having AS, so, who knows: we might wind up with a genius or a bajillionaire in the family. Even Dan Ackroyd has AS, which, for some reason, comforts me to no end.

But, at this point, all we know is that The Squirrelly falls somewhere on the autistic spectrum.

It’s worth noting that he will make eye contact with me and The Queen for long periods of time, though he does so infrequently. I wouldn’t characterize him as overly affectionate, but he loves roughhousing with his father, sitting in his mother’s lap, and getting hugs from either. He cries when one of us walks out the door, even if its just to get the mail. Most importantly, to my mind, he has a great personality, he laughs a lot, and, in general, is an exceptionally easy-going and happy kid. Honestly, what else matters?

It goes without saying that we are anxious about his future, and have lost sleep since receiving the news. But that’s when we tend to fret: when he’s asleep in his room and we’re awake in ours. Or when we are at work and he is at daycare. Or whenever he’s not around. When he is around, though, it’s almost impossible to worry about him too much. You can’t spend any time in the company of this kid and not think that, regardless of the diagnosis, he’s going to turn out awesome.

* * *

Of the aforementioned ASD symptoms that The Squirrelly is exhibiting, “rarely engages in imitative play” probably seems like the least of them. Actually, this one turns out to be a sticky wicket (as they say, um, somewhere, I think). Imitation is, after all, how toddlers learn a lot of things — they see their mother use a spoon, so they decide to try using a spoon themselves. Most parents take it for granted that they can teach their child by demonstration; when that option isn’t available, things get a bit thornier.

So the first thing we need to do is teach The Squirrelly how to learn. The mostly widely accepted method for doing this is called Applied Behavioral Analysis (ABA). The Queen and I have spent the last few weeks trying to arrange ABA therapy for The Squirrelly, but it’s proving to be something of a chore. Autism is on the rise in the US (even when you account for improved diagnostic techniques), but the increasing number of ASD cases is not being matched by a the growth in autism services. Consequentially, many organizations that offer ABA now have outrageous waiting lists and fees. Demand is running roughshod over supply.

So curious as it may sound, The Squirrelly’s diagnosis came as something of a relief to us. The Queen and I have been devouring books on autism ever since the pediatrician seconded the daycare lady’s suspicions, and by the time we brought him to the UW we were already convinced that he had some form of ASD. But hunches aren’t enough to seek treatment. To gain access to the ABA clinics, you need an official diagnosis; once we had one we could start arranging for intervention.

The Squirrelly continues to go to the UW Autism Clinic of assessment visits. He will receive an MRI on the 28th. In the meantime we have begun incorporating ABA principles into our daily interaction with him and scheduling therapy sessions. Research has shown that intensive therapy can work wonders on children with ASD, assuming its caught early. As The Squirrelly was diagnosed at eighteen months — about as early as ASD can reliably be identified — we have every reason to believe that he will be very responsive to it.

* * *

And now, a story.

For about a decade I didn’t eat horseradish. My mother served it to my sister and I when we were kids, but I never touched the stuff after I left the nest. It wasn’t that I disliked it, but I’m not much of a condiment man and never felt the need to slather it onto to anything.

Fast-forward to my late twenties, when The Queen and I were visiting some friends. I had just finished telling a story and The Queen had launched into one, so I grabbed something to snack on from a nearby plate of appetizers. All of the food that I liked had already been eaten (undoubtedly by me), so I took one of the salmon fillets. And because I wasn’t wild about fish, I decided to mask the taste by loading it up with the accompanying horseradish.

I realized it was horseradish that I was putting on my salmon, and I remembered that horseradish was hot. But there were two other factors in play. First, when you get older you often find that the foods you thought were unbearably spicy as a kid are actually rather bland, so I was compensating accordingly. Second, my friends had served us straight horseradish, My mother always given us prepared horseradish, and I was unaware that it came in any other form. Consequentially, I shoved a horrific amount of the stuff into my mouth and started chewing.

At first it wasn’t so bad: just the mildly hot flavor that I remembered from my childhood. But then, at some point, I realized that it was getting hotter, and hotter, and hotter. I stopped chewing. I let my mouth hang open. Suddenly the heat doubled, and doubled again. By this point I wasn’t even able do the comical “HA-HA-HAAAA!” hand-waving-in-front-of-the-mouth routine — the horseradish was so hot that I was paralyzed, sitting there ossified while my friends laughed at the conclusion to The Queen’s story.

As the feeling continued to grow I began to seriously wonder: can I die from this? Can this become so overwhelming that my body goes into shock, and I’ll just slump sidewise and perish from the sheer enormity of the sensation?

I’ve been thinking about this story a lot lately, because I have begun to wonder the same thing about my love for The Squirrelly.

 

211 thoughts on “ASD

  1. With 202 comments, I’m pretty sure there’s not much going on in my second floor that hasn’t been said already. But, as a long time reader, I just wanted to add my well wishes and confidence in your son’s bright future.

  2. Hi there Matt,

    I don’t know you, but I enjoy reading your funny observations on life and the like. This post about your son is so very moving, and my best wishes are with you and your family. I am a behavoir modification therapist for children with ASD. You mentioned you were looking into the ABA program for your son, and i would just like to recommend another program that is out there, RDI (relationship develoment intervention). It is a relatively new program, but, depending on your son’s needs, may be a great help to him. You can learn more information about it at http://www.rdiconnect.com . My best wishes to the The Squirrelly!

  3. Several thousand miles from seattle, without knowing you, I was moved when the Squirrelly was born, more than I ever thought possible. And now again. Respect and sympathy for you all.

  4. The best thing that can be done for any child, regardless of disability, handicap (a disability is only a handicap if it is significantly impeding on two or more areas of one’s life) is to remember that the child is still a child!

    So roll over, go back to sleep and relax. Your little boy has wonderful parents and he will be FINE. Encourage him to socialize with other kids (start with settings that are comfortable to him), encourage new kinds of toys, just like you would with any other kid. It just might take a little more perserverance. The diagnosis is only important to the doctors and clinicians. He is still a little boy who loves his mommy and daddy and his footie pj’s. Any good doctor or teacher who ever works with your son should understand that.

  5. Thank you so much for your quality links. They were very helpful to me in initial quest for knowledge.

  6. my son attended u dub’s autism spectrum group for awhile. they have an awesome program there. he’s 11 now and doing very well. it’s a good start, those guys. best wishes!

  7. Thank you for sharing this, it has truly touched my heart. Your young lad will surely grow up and touch your heart in ways you thought were unimaginable. I have on my desk a “pencil holder” made by an autistic boy at the Higashi School in Boston, here’s the link:
    http://www.bostonhigashi.org/

    They are a school specially created for autistic children. They have a craft fair once a year and I buy all kinds of the children’s artwork as gifts for people. This green glazed, made out of clay pencil holder is something I cherish.

    Keep smiling! It’s a journey that has just begun.
    Flydi

  8. My son is 7 and has an ASD. Once you get over the shock, you will all be fine. He’s the same kid he was before the labels. I think kids with ASD have the potential to be the coolest people in the universe. They see things in a different way from the average person. Hang in there and keep up with the recommended therapies.

  9. I’ve been reading you for a while.. I have Asperger’s Syndrome, as does my stepdaughter. So the good news is… life doesnt end with AS.. although sometimes it feels like it will :) You should check out the OASIS AS board.. lots of parents of kids with AS.. good company :)

  10. I think you should write a book!
    Your little story was hugely entertaining and well written, as well as being poignant and emotionally heartening!
    All the best,
    Jul x

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