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Arbitrary Normality

by Rob on July 28, 2010 · View Comments

in Being a Doctor

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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 it’s 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 – but 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.”

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{ 64 comments }

yukon July 29, 2010 at 8:23 pm

Cool.

Venessa July 29, 2010 at 8:47 pm

Great article!!! At first I was annoyed, then glad that your mindset changed. Just wish new age mothers/parents learnt a thing from your article as children do become adults

Venessa July 29, 2010 at 8:55 pm

Learnt since my son's diagnosis – April 2008, he is 7. That there is a big divide. I am accepting my son for who he is!!! No one is perfect, my son was different and it was not the MMR jab. Have friends who did not give their child the jab and still have the condition?? Just want my son to get the right support and changing people's mindset!

yaka11 July 29, 2010 at 9:18 pm

Doc, I have to actually walk away from the computer now, compose myself, then maybe I will come to share what my thoughts are as a Mom to 3 young, beautiful kids, 2 who have Autism. I sincerely think your post was meant to really state that kids with Autism or other related Neurological MEDICAL disorders are not be be feared…however in doing so you have just continued the stereotyping of us parents, and that is the part that infuriates me. I am off to calm down and figure out if its even worth me posting….if I continued the post here I feel I will just be shoved aside as an 'angry and crazy parent looking for something to blame'…

Leila July 29, 2010 at 9:27 pm

As a parent of an autistic child I really enjoyed your post.

Medical BillDog July 29, 2010 at 10:00 pm

“[O]ver half the U.S. population”? All the parents I know get their kids vaccinated. Their only concern with the growth of the schedule is that it takes time and effort to keep up with it. Impending tidal wave of those with autism. I'm sorry your kid is sick, but get a grip.

Stuart Duncan July 29, 2010 at 11:22 pm

I love that JM brings awareness to Autism but I really hate the misinformation and opinions she passes as “facts”.
The Anti-Vaccine people feel like victims, feel like their children were “ripped away from them” so I can understand the passion.
However, I don't understand how anyone and everyone who ever tries to see a bright side, tries to pass along a little happiness or good feelings is always attacked for it.
My child has Autism, it was not caused by any vaccines. I know that for a fact. I am not a victim and he is not a victim.
I for one appreciate those who celebrate our children… with or without Autism. Those who look at our children as maybe a little off, but still normal. I appreciate people who can love our kids without having to look for someone to fight at the same time.
This is a good article by a caring doctor… stop reading into it more than what it is.

KWombles July 29, 2010 at 11:59 pm

I searched Dr Rob's post and nowhere does he call autism the “new normal.” You know where that phrase does appear, though? Age of Autism. Instead of reading this post, really reading it, Stagliano ran with her agenda and this idea of “new normal.” And your post betrays that instead of reading the post here, really reading it, and going, wait a minute, that's nowhere in this post, you ran with your agenda.

Yes, there's pain involved in parenting children with disabilities. Dr. Rob's post wasn't dismissing that. His post was pointing out that society needs to move beyond pitying individuals on the spectrum. My three children don't need pity. Compassion and respect, but not pity.

Donna B. July 30, 2010 at 2:43 am

A dear friend of mine has fraternal twins. One of them suffered from something… obviously. She didn't thrive like her sister did and she would often scream in pain. Finally, she was diagnosed as having celiac disease. Diet has done wonders for her in so many ways.

But… celiac doesn't mean autistic. It's two different things and confusing them is a disservice to children with either disease.

Nightshade1972 July 30, 2010 at 2:47 am

She's right. When I was younger and using online dating services, some of them had a feature where you could see how many people had visited your profile, how many people had left you messages, etc. My “visited” was always much higher than my “messages”. The last time I used a dating service (where I met my husband), I bluntly stated in my profile “I'm neurologically handicapped, unable to drive and I sometimes use a cane when I walk. If I haven't scared you off by now, I'd love to hear from you!” Was I disappointed that maybe ten percent (or less) of the guys who visited that profile bothered to leave me a message? Of course. But I also knew that the people who did respond, like hubby, were willing to look past a “disabled person” to just see the “person”. And I think that's the point Dr. Rob was trying to make. It's natural for a “normal, healthy” person to feel awkward and standoffish around people so obviously different from themselves. But, over time, he got to know his patients as personalities, not just diagnoses. Too many doctors fail to do this either because they lack the empathy or they'd rather not get “too emotionally invested” in patients who might not have positive outcomes. I'm glad Dr. Rob doesn't appear to be one of those doctors. He's not asking for a pat on the back, he's acknowledging his frailties. Good for him.

autismnewsbeat July 30, 2010 at 3:50 am

“Like the neurologist married to the pediatric nurse who won the case that the shot did, indeed, cause their daughter's type of autism.”

Except the Poling case doesn't come close to proving vaccines cause autism.

PhilS32767 July 30, 2010 at 5:18 am

Some of them seem Hell-bent upon ultimately *drowning* in their own bile. And that won't do their children much good.
The key insight, as I learned more than a decade and a half ago, is to understand the difference between autistic ways of being, on the one hand, and disability concomitant or secondary to autism. The best way forward is to work on mitigating the latter, without getting hung up over the former. And to realize that disability often arises as much because of lack of accommodation or tolerance on the part of the rest of the world, as it does because of anything intrinsic to the disabled person. So a large part of mitigating disability involves removing barriers *extrinsic* to the disabled person. One learns to work both sides of the street — the social model of disability as well as the medical model. I wish all those “warrior moms” out there chasing all those quack “cures” would put just half that energy into removing barriers that our society puts in the way of our kids.

Mooncatadams July 30, 2010 at 5:27 am

No, we prefer to be called “autistic”. It's what we call ourselves, or at least , those of us who ACCEPT it and move on. (And there are some who don't, who whine and curse “the autism”.) It is inherent in our being, and cannot be removed, not by any means. We can learn, grow, and improve IF we are given environments where we can prosper best. If you have autistic child/ren, accepting it and doing what you can to help them would be the best thing you could do.

Mooncatadams July 30, 2010 at 5:36 am

Thank you, Dr. Rob, for this great post. I've been autistic (Aspergers) for 64 years, was only Dxd 11 years ago. It had caused me many problems, but learning of my Dx solved many of them. At least, *I* could finally understand me. ;-)

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