Monday, August 2, 2010

Arbitrary Normality

Dr. Rob Lamberts

I’ve been practicing for sixteen years now, doing both internal medicine and pediatrics. One of the joys of that is watching kids under my care grow up and not having to give up their care just because they get older. The spectrum is wide, with some kids growing up in “normal” families with “normal lives,” others in “abnormal” families, and yet others with inherently “abnormal” lives due to illness or disability.

But the kids aren’t the only thing that has changed over the past sixteen years, their doctor has changed as well. My comfort zones have widened, not getting rattled by “abnormal” as I once did. I used to feel uncomfortable with the mentally and emotionally disabled, now I am not. I used to feel sorry for parents with “abnormal” children. I used to feel bad for kids who were “abnormal;” I still do now, but not nearly as much.

Of course, they all are well-aware that they have an “abnormal” doctor. OK, you can lose the quotes on that one.

These emotions have been most transformed in my attitude toward autistic children. Autism used to make me very uncomfortable. I felt awkward talking to their parents. I tried to avoid the topic. How the parents must wish their kids were “normal,” and how the kids would wish they were “normal” (if they could). I felt pity.

But as the years have gone by, I’ve discovered an amazing transformation: I now really like my autistic patients. These are often some of the more enjoyable visits. I’ve also noticed that, contrary to society’s perception, the parents of autistic kids are not in mourning. They are not living in a constant state of “what could have been.” They are often smiling.

Society likes to take a group of people, call them “abnormal” and feel sorry for them. Disabled children are the center of our societal pity, with the torch-bearers for this being Jenny McCarthy and the other avid anti-vaccine folks. Unlike the lepers of biblical times, these kids and their parents don’t have to cry out “leper, leper!” to be avoided by others; they are avoided by default, pitied for what others don’t understand.

But as I have gotten to watch these kids grow up and have become closer to their parents, I’ve noticed the following:
  • They get better over time. Children I once felt sorry for I am having conversations with. They are not “normal” -- they are unique. Autistic kids mature over time, just like “normal” kids. Autistic kids become more aware over time, just like “normal” kids.
  • There is an innocence and a lack of guile that is endearing. They don’t lie to me, they don’t beat around the bush on issues. Sometimes I get surprised by what they say, with its bluntness, but I don’t mind that anymore.
  • They are generally happy.  They don’t seem to carry the anxiety that has become rampant in our society. They do get angry and obstinate -- sometimes at a very high volume -- once that dies down, they become content once more.
  • As they gain function, they also gain a unique sense of humor. I don’t think I can explain it better than this, but I often find myself laughing when I’m seeing them.
  • The parents are proud of them. Once they can drop their societal defensiveness from universal pity, they delight in the accomplishments of their children. Perhaps this is because they don’t take things for granted; perhaps they don’t feel entitled to “normal.”
I’m not saying that there isn’t hard stuff that’s unique to raising autistic kids. I am not saying that we shouldn’t be devoting resources to helping these kids and figuring out the cause of autism. What I am saying is that we need to get beyond the pity. These kids are not lepers. They are unique people with their own strengths and weaknesses. They bring me joy when I see them -- more joy than many “normal” kids bring.

Normal is overrated. Normal is arbitrary and evasive. Nobody is normal; we all bring our own uniqueness to this world that should be appreciated for what it is. A very large portion of the “normal” people I see are anxious and unhappy. I doubt the suicide rate among autistic teens is anywhere near that of “normal” teens.

So, to all of you “normal” people out there I say: get over it. Don’t be afraid, and please lose the pity. After you involve yourself with these and other kids with disabilities your life won’t be “normal,” but who needs “normal” anyway? We all need to lose a little “normal.”

To all of those autistic kids I’ve seen I say: thanks for teaching me the arbitrary nature of “normal.”

This essay was originally published at Musings of a Distractible Mind.