A Portrait of Autism

September 2004

Here at writing.com, many of you know me only as winklett in the woods ...but I am also Amy, wife of an awesome husband, Andy, and mom of one darn cute autistic boy, 2 ½ year old Jonah. Since Jonah was just recently diagnosed with autism (in January of 2004), I’ve had less than a year of experience with its mystery. I’m still figuring out what autism is and what it means for our family.

Jonah was diagnosed about as early as autism can be diagnosed, at 18 months of age. Luckily, our family doctor noticed something amiss when Jonah was just a few months old: Whereas most babies will focus on faces, Jonah would instead stare at lights. During a regular office checkup, Jonah looked right past Dr. Reider to stare at the florescent bulb over his shoulder. I remember Dr. Reider saying gently, “hey, buddy, there’s a human in here,” and I remember expressing concern when Jonah did not respond. The doc took note of it but reassured me that it was too soon to worry.

As the months passed, though, there were other concerns, and it became obvious that Jonah was different. He didn’t speak any words at all, and he made a near-constant growling grunt. He never pointed at anything, as most toddlers will do in an attempt to communicate. He loved to spin things - his spoon, his toys, himself. He would sit in the window and stare outside. Andy and I didn’t know exactly what babies should be doing and when, but we both knew something was going on.

So when I brought Jonah in for his regular 18-month checkup and Dr. Reider suggested we have Jonah evaluated by a Developmental Pediatrician, I was not surprised.

The actual diagnosis of autism by that pediatrician, however, was a shock for us. From the little I knew, I’d always assumed that autistic children were cold, distant, and disengaged. Jonah loved to hug and was very loving. He had a great sense of humor and laughed with delight over games of chase or hide & seek. He was playful, and charming, and fun! Surely he couldn’t be autistic.

I was wrong, of course. There is no one portrait of an autistic person. Autism can take many forms; in fact, those with autism are considered on the “autistic spectrum” because the manifestations of the condition are as varied and different as colors on the rainbow.

With Jonah’s diagnosis of autism came a million questions: Is he retarded? Will he be able to talk? Go to school? Live independently?

The answers have been slow in coming. It’s really too soon to say where Jonah is on the autism spectrum. We don’t really know how intelligent he is (thought he certainly seems bright, especially when he doesn't want to be caught!) and he still has virtually no verbal language skills. So we wait as patiently as possible.

Meanwhile, Jonah has been receiving Early Intervention services since December of 2003. This means that three different teachers come to our home, each twice or three times a week, to play and work with him. And twice a week for two hours each day, he attends a pre-school for autistic kids. Among other things, Jonah has learned some sign language, play skills, and calming/focusing activities. I’m so happy to see him progressing with the help of these nurturing teachers, and I’m grateful we live in a state where these services are provided to us free of charge.

Sometimes it's unbearably frustrating to parent an autistic child. We can't take Jonah to a restaurant, for example, because it's always a strong possibility that he'll have an all-out tantrum -- and there's no quelling a tantrum in a child with whom you can't effectively communicate.

At the park, Jonah often becomes obsessed with one piece of play equipment to the exclusion of anything else. When it is time to "share," Jonah will often break down completely, and I'll need to get him to the car, as he kicks and screams top-volume amid stares of other parents who probably assume he is just a brat. We can't really go anywhere that we can't leave quickly if need be, in case he has just such a tantrum.

Jonah wakes up every morning between 4 and 5:30am, which is beginning to wear on Andy and me. We have no idea how or when we are going to be able to toilet train him, because he can't follow even simple directions.

And the list goes on. Sometimes I wonder how I'm going to make it through to next year - to next month - to tomorrow. But then I just get through each moment as best I can and leave the rest to divinity.

After all, Jonah is the same precious child today as he was before his diagnosis. Autism may be a part of who he is but it is not his defining characteristic. And, no matter how "smart" he turns out to be, something tells me he will be my greatest teacher.

I consider myself lucky to have such a wonderful support system of family and friends, both in the "real world" and the "cyber world."

With the help of people who seek to understand, educate, and work with compassion in the world, I have high hopes for Jonah. May he, and all others with autism, find a way to truly shine!