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Coming to terms with the ‘A-word’

For about the past year I have been coming to terms with my son Harrison’s autism. For several months I battled with the use of the label, but then a trip to Denver’s Children’s Hospital made it official. After a morning of tests the doctor, who I am sure had faced other skeptical fathers, looked right at me and said what I knew she would say: “It is autism.”newsweater

What I have come to learn over the year since this diagnosis is that the word means so many different things to so many different people, and the symptoms are so variable and come in so many different degrees — a true spectrum. I have spoken to very few friends and family members about this subject, and this is the first time I have attempted to write about it. In fact, I would not even say “autism” for some time and have referred to it as “the A-word.”

I think there is some validity to my initial skepticism. Autism is a medical diagnosis but doctors don’t really know what it is or what causes it. There is no concrete medical test such as a blood test or brain scan to determine if a person has it. Instead, the diagnosis is made using subjective psychological tests. I say subjective because from what I saw the results of Harrison’s testing could have been different given any number of variables, not excluding who was in the room besides the doctor, the mood of the child at the time of the tests, that the tests were given in unfamiliar surroundings, and that the tests were given in a room where there were many things that could be a distraction.

Still, we know that Harrison is different from other children his age, and these tests at least gave us something to pin it on. Beyond that, the label is really meaningless. I like to say he has learning differences rather than learning delays or disabilities.

There are some people — actual grownups — who say that children with autism are merely spoiled kids whose parents do not properly discipline them. These folks clearly have no clue what it’s like to live day in and day out with a child who has these challenges. If you would like a little taste of what it’s like watch this video: “Autism Every Day.”

Note that there are no fathers featured in this video.

Over the weekend I saw the last half of the film “Rain Man,” which until now I had been unprepared to watch. Through the eyes of a parent of a child with autism this movie is really an adventure, especially since the central character is a grown man with no living parents. There are the obvious stereotypical references to Raymond’s (Dustin Hoffman) autism: Watching clothes spin in a dryer; sensitivity to the bright and moving lights of Las Vegas and to loud noises; monotone emotionless speech; a lack of eye contact.

In fact, my son now rarely displays any of these behaviors though he has at some point in time exhibited many of them and it is not surprising to see him engage in one of them at any time. He does have a fixation on doors and hinges. We are lucky that Harrison’s autism is considered to be “mild” and he has made tremendous progress in recent months. But this does not mean life is not challenging for all of us. A simple trip to the store, for example, can either be just fine or a complete nightmare.

The scene that made “Rain Man” real for me was near the end when Raymond was cooking some waffles in a toaster oven and they burned, setting off a smoke alarm and upsetting him terribly. It wasn’t Raymond’s reaction to the situation that made such an impression on me — it was Charlie’s (Tom Cruise) terror as he ran to the kitchen to see what was happening. The expression on Charlie’s face summed up what it’s like to be a parent or caregiver of someone with autism — you’re always on alert.

It was a full day later that the actual meaning of the film’s title struck me.

Tonight I taught Harrison to catch a football. I did this by having him sit at the top of the stairs while I tossed a Nerf football up to him. The angle of the stairs allowed plenty of hang time for him to track the ball, put out his hands and make the catch. He snagged the ball several times and tossed it back down to me.

In the day-to-day dealings with autism, little victories can be huge. 

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6 Responses to “Coming to terms with the ‘A-word’”

  1. miles f. porter iv Says:

    hal,
    this column is a big, progressive, positive step for the walter family. there will be more.
    as always,
    miles and mary

  2. Old Bogus Says:

    What a touching post. Thank you for sharing.

  3. 12th Man Says:

    Hal,
    “Rainman” wasn’t based on anyone in particular, but Hoffman modeled his acting off of a man who has quite an interesting story. He can’t count cards or flying Cheetohs, but he reads both sides (both pages) of an open book at the same time, spending about two seconds per page, and has a photographic memory.

    From time to time, PBS airs a documentary they made a few years ago called “Brainman.” It’s worth looking up. Brainman is the nickname of a young man who memorized Pi to around 20,000 decimal places, and he has mild Asperger’s. There’s a segment in the documentary about the “Rainman” model. Quite fascinating.

    Your football lesson here is brilliant. I think there’s a cottage industry waiting to happen in breaking down sports into their building blocks for young kids. I have a little theory about teaching a kid to hit a hockey puck (or a ball with a hockey stick) years before you show him a baseball bat. Hitting a baseball is a 3D eye-hand skill, while a hockey puck is only 2D, and the kids I know who played with hockey sticks around 9-12 months all developed into pretty darn good baseball players. Your stair technique is a classic example of taking the skill away from the specifics of the game and breaking it into teaching building blocks.

  4. pete Says:

    Beautiful.

  5. Dave TenEyck Says:

    Hal,

    My younger brothers son has Aspergers, which I understand to be a version of autism. He is a challenge, but a great joy for his parents as well.

    I have been skeptical of some diagnosis of childhood problems, but this one is real and Lori & I wish you and Mary the best in learning about and living with Harry’s challenges.

    Dave

  6. Shelby Says:

    Hal and Mary,

    We love you all so much. Harrison is a bright, adorable little boy and we love him to pieces. Thank god for this little boy who is a blessing to our family, and I think he is the luckiest kid in the world to have both you and Mary as his parents.

    We miss and love you all, Shelby

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