Autism in the Eye of the Beholder (and the Special Master)
Do you always notice if there’s someone autistic in the room?
A few years ago, I would have answered “of course, yes, I can spot an autistic child a mile away” and many people I knew swore the same. More recently, I have become less and less sure. Certainly I do note young children who have a certain fixed and repetitive pattern of speech, or other repetitive motions. Certainly we’ve encountered children in a state of “high tantrum mode” but that hardly qualifies them as autistic, for sure (though tantrums in public are something that many the parent of an autistic child has noted happening on trips to stores, restaurants, etc.). But how do you know that an adult on the spectrum isn’t sitting across from you on the subway?
We rode the PATH train into lower Manhattan this afternoon; Charlie sat quietly with his polarfleece-gloved hands between his knees and looked around him from beneath the hood of his blue jacket (yes, he seems to have had a very mild version of the cold/flu I had). Walking down Avenue A and then Canal Street and into Chinatown, Charlie held tightly to Jim’s hand and leaned against him. The main things that Charlie said were: “Sprite” and “burgers and fries” (thanks to the ubiquitous McDonald’s and restaurants) and, after we had eaten, “yellow car.” “Those are taxis,” Jim pointed out. After which Charlie said “yellow car, taxi, taxi!” And we kept walking.
Somehow I don’t think any of that would be grounds for a passerby, and maybe even someone more in the know, by saying for sure that Charlie has autism. (But I could be wrong.) It is the case that we don’t seem to encounter too many 10 to 11 year old boys with minimal speech and some interesting mannerisms walking around Greenwich Village (but maybe I’m not looking hard enough). How much autism you see depends on whether or not you’re looking.
On March 7th, journalist Arthur Allen noted that the recent compensation granted to Hannah Poling is not the first. As Allen wrote in the Independent Streak:
I have since learned that the 934 families paid out more than $800 million since 1990 by the vaccine court included several with injuries that resulted in “autism-like symptoms.” At least a few of these cases involved tuberous sclerosis complex, a rare genetic condition in which tumors pop up in the brain and other organs, sometimes causing severe mental disability. Like mitochondrial disease, tuberous sclerosis can occur in the form of a regression in a normal-seeming child—and has been known to follow a shot. A senior court official tells me that a handful of TSC kids awarded by the court were, for all intents and purposes, autistic—though no one called it autism.
“We just were not in tune to autism issues in those days,” the official said.
In today’s Philadelphia Inquirer, Gary Golkiewicz, chief special master for the U.S. Court of Federal Claims, also noted that Hannah Poling’s case might not be the first involving a child with autistic symptoms being awarded compensation:
“Years ago, actually, I had a case, before we understood or knew the implications of autism, that the vaccine injured the child’s brain and caused an encephalopathy,” he said. The symptoms that come with that, he said, “fall within the broad rubric of autism.”
And there are other somewhat similar cases, he said, that were decided before autism and its symptoms were more clearly defined.
It was in 1994 that the DSM-IV appeared; the DSM-IV broadened the diagnostic criteria for autism, and this change in the diagnostic criteria for autism is one of the reasons for the increase in the prevalence of autism today. Public knowledge and awareness about autism have substantially increased in the years since 1990. As the senior court official above noted, people were just not “in tune to autism issues” in the 1990s.
Some will say that these other cases are further “evidence” for a link between vaccines and autism. But we have to keep in mind the extent to which the diagnostic criteria for autism and our understanding about autism have changed, and the extent to which special education and other services for autistic children has also increased. In previous years, or in other years, perhaps Hannah Poling’s diagnosis of encelopathy would have been the most remarked on. It’s hard to see outside of one’s historical moment (as my husband, who is a historian, reminds me often). It’s hard for us, perhaps, to imagine a world without the kind of understanding and awareness about autism that we live in.
But hopefully it’s a little easier to imagine that the maybe 11 year old boy sitting across from you and nursing a bottle of Sprite, with two people who are clearly his parents on either side occasionally rubbing his back or saying “first we’ll go for a walk then we’ll eat dinner”—that that boy, however “autistic” he appears or not, really is.
At least, that’s what his diagnosis says.
Tags: asd, asperger, autism, david kirby, government, mercury, mitochondrial disease, Parenting, pdd-nos, vaccine court, VaccinesRelated Stories
POSTED IN: Diagnosis, Health, Legal Issues, Vaccines
9 opinions for Autism in the Eye of the Beholder (and the Special Master)
Justthisguy
Mar 10, 2008 at 3:11 am
Before 1994, I reckon people like me would have been described (if accurately described) as “a bit strange and socially awkward, but normal, and he needs to straighten up and fly right!”
Autism does seem to come in degrees. I do believe that a little of it is always good for you, and a lot of it is not necessarily bad for you.
As I think I’ve written before, if it weren’t for my autistic traits, I’d be a really good’fer’nuthin slacker.
laurentius-rex
Mar 10, 2008 at 3:20 am
It’s the old availability heuristic in action
http://en.wikipedia.org/wiki/Availability_heuristichttp://en.wikipedia.org/wiki/Availability_heuristic
A kind of primed memory effect where one is more receptive to and vigilant in seeing what one is familiar with. Kind of like the way I notice old land rovers everywhere, when other motorists wouldn’t give them a second glance.
dkmnow
Mar 10, 2008 at 4:16 am
Justthisguy,
I just get pegged as a rude “ne’er-do-well,” and if I try to explain myself, I get scolded for “making excuses.” Or worse.
The only people who take my spectrum-style development seriously are those who know me very, very well. Fortunately, two of them are my parents. Otherwise, I’d be toast.
Emily
Mar 10, 2008 at 9:10 am
Tuberous sclerosis is, I think, a disease of trinucleotide expansion, like fragile X or Huntington’s. Hit a certain critical mass of nucleotide repeats, and you cross the borderline into symptoms. It makes “tuber-like” tumors in the brain. I know one person who’s child had that. He developed “normally” until he was a few months old, then had a seizure. That’s how they found out about it. Obviously, this is hereditary, too.
About noting the kids/adults on the spectrum: My husband is a programmer. In my opinion, we know several adults who fit those criteria. One is a man who will walk up to women and just stand there, staring, with a little grin on his face because he’s just so happy to be standing next to a woman. Women do not find this to be socially appealing behavior. But he’s also a very bright, great programmer. Just extremely socially awkward, not aware of boundaries. Has a unifocal obsession. Etc. We know many people like this. I know an attorney in his 40s who was just diagnosed as having Asperger’s. We knew that about him already, but had never mentioned it.
My husband and I will often make eye contact over something we’ve observed in a child we don’t know, a silent communication that means, “Are you thinking what I’m thinking? This child is like *our* children.” And like Kristina, I do sometimes wonder if TH’s public behavior stands out. We’re so used to it, I don’t even know if other people notice it or not.
Bad mommy
Mar 10, 2008 at 9:46 am
I often see other children behaving in ways that cause me to suspect the spectrum (or bearing physical markers that suggest a genetic problem), but I figure I could always be wrong and figure I’m missing a lot of what is out there. But the thing is, particularly when children are small, getting out of the house with your moderate to severe kid is very, very hard. Therefore, I don’t think that we see those kids out as much as one might otherwise. I know that my youngest is really quite mild, but when he was small — well, we would have to enlist a third adult to go places with us, because I had to physically have a hand on him at all times. It has gotten steadily easier, and of course, these days people tend to tell me that they don’t think he’s autistic at all, or that I’m being overdramatic in saying that there is anything wrong with him. People only do this when they first meet him. An excellent example would be his teacher, who at first said that he didn’t stand out at all in the class. As he’s adjusted to the changes, however, and calmed down enough to relax and let himself be himself? She sees it. And now she’s in awe of how well he self-regulates and adjusts to his environment. He does, really, but there is a certain amount of eating mulch off the playground and walking in circles humming (instead of playing with the other children) that goes into that. He is de-stressing in his own way on the playground, but his way doesn’t look normal when you see it persistently. On any given day? You might not notice him at all. Unless you were really looking, and you listened to him talk for a good long time - then you might clue in.
Neurological damage manifests with symptoms that are very similar across the origin of the problem. Neurologically different people, whether there is what we’d call “damage” present or merely wiring that is not the standard issue, tend to have certain behaviors in common - and they tend to be present in the “normal” population to some degree, too. Anytime you define a diagnosis by a set of symptoms, it could apply to a vast array of underlying conditions. Remember amphetamine psychosis?
How my son seems in public is a long-term question for us, and we’re often negatively judged for being disruptive, but not “autistic enough” to be obviously different. I often wonder what it is others see, and what it is that they expect “autistic” looks like.
M
Mar 10, 2008 at 10:34 am
I usually just make up my own diagnoses and label people with those. It’s particularly fun to do this for folks with no discernible issues. Recently, diagnoses have included:
Absurdly Normal.
Freakishly Normal.
Normalcy Not Otherwise Specified.
Normalcy Quite Definitively Specified.
(and so on)…
If someone has more than one quirky trait or habit, they are Bi-strangely…Disusual…the Conformingly Disinclined (new words are applied as needed).
Marla
Mar 10, 2008 at 11:30 am
My family has accused me of always trying to diagnose. When you spend so much time reading and studying and working with your Autistic child it can be hard not to see the red flags in another child or adult. I have since learned though to keep quiet about these red flags.
Norah
Mar 10, 2008 at 3:16 pm
I’m probably pretty easily recognisable as autistic by people who already know a bit about it. People who don’t have characterised me (wrongly) as all sorts of things. The most common were shy, aloof, rude, egocentric, arrogant, a geek, antisocial, or just weird. Less common was attention-seeking, lonely or depressed. I tend to freeze up when out in public. I do stim, but it might not be very obvious, but mostly I just keep very still. It would be easy to see when I’m walking though, it tends to be rather stiff, especially my arms.
I don’t think I’d recognise all other autistic people, and maybe I’d (think I) recognise some that actually aren’t too. I often wonder if someone I see is autistic too, or just kinda nerdy or shy and not caring what people think. A shame you can’t just go up and ask.
Kristina Chew, PhD
Mar 10, 2008 at 3:37 pm
@laurentius-rex, thanks for the new term for more vocabulary.
How “different” does one have to be to get spared at—-or to qualify for “compensation.”
Have an opinion? Leave a comment: