There are plenty of theories as to why autism numbers have sky-rocketed over the past few decades. Opinions fall into two broad categories: Either the increase in autism is real (usually placing the cause on environmental factors such as toxins and vaccines), or the increase is largely one of changes in diagnosis (due to such things as broadened diagnostic criteria and increased awareness). One of the possible factors increasing diagnosed numbers, is misdiagnosis – particularly over-diagnosis. Misdiagnosis could be due to diagnosis by those without credentials (such as self-diagnosis by lay-people), but misdiagnosis can also be by those with the correct credentials (such as developmental pediatricians). I’m going to share a story about an example of the latter. I want you to help me make sense of it.
There is a particular doctor who is well-known in the local autism community, for being the “go-to” guy when you can’t get anyone else to confirm that your child has autism. (Hear alarm bells going off already?) I’ve personally heard and seen his name recommended to others in that capacity. It should not be surprising then that I recently came across a very confused and upset parent, who was told by this doctor that her son has autism, when she sees no convincing evidence of it in her son at all. She’s attended seminars and such like after the diagnosis, and though all the other parents around her showed agreement and recognition of the autistic traits spoken of, in their own children, she found no such recognition about her own son. Needless to say, she’s decided to seek a second opinion (and on her description of her son’s behaviour, I think that is a wise course of action).
This doctor has also apparently shared the opinion that all gifted children have Aspergers, so if you were to take your gifted child to him, chances are pretty good you’re walking out of there with a diagnosis of autism too. I’ve seen this doctor particularly recommended to people who were keen to get government paid financial assistance for their difficult child. This same doctor is also known for being a bit too fond of medicating children, where other pediatricians are far more reluctant to fall back on medicating the young.
He’s not cheap either, if you don’t approach him through the public system. You’re looking at almost $400 for an hour session, which is all he requires to make a diagnosis. (I should perhaps add that my own son’s pediatrician only saw him for an hour before making a diagnosis, but my son had classic autism, and it was an easy and obvious diagnosis for every professional he has interacted with. If his autism was less severe at the time of diagnosis, I would have expected longer or multiple sessions. And his pediatrician has seen him many occasions since then too of course.)
All of this is hearsay (even though I’m reading these things on multiple local forums, and his name and reputation is well-known in the autism community). From what I can see, he is qualified and respected in his field, though I admit that I wouldn’t know where to look to find evidence that he wasn’t. I do not know whether there are any checks and balances on over-diagnoses either – perhaps there are and he has not being found to be over-diagnosing via those systems, I just don’t know. And so I’m not sharing his name or his practice. But I am nevertheless sharing this story, because I think it raises some interesting and important talking points.
One such point is the question of under-diagnosis. There is absolutely no doubt that many people who do have autism, are going undiagnosed, or wrongly diagnosed – there are an abundance of such stories and experiences splashed across the net, and I’ve seen it myself more than once. Maybe this doctor is just receiving the tougher fringe cases of autism – the ones missed by all those other practitioners who couldn’t give the parents the answers they needed.
If he is just keenly aware of autism, and sees it in people in its less obvious forms, is he perhaps revolutionary in his own understanding and perception of how widespread autism is? Should he therefore be seen as a hero, rather than a villain (a villain for confusing, upsetting and misleading parents, and for helping people to get scarce financial assistance when legitimate cases are struggling to get their “piece of the pie”).
Another question is whether there is anything wrong with him helping parents to get that financial assistance? If he sees worthy and needy parents, and he knows how to work the system to get them the support that he sees them in need of, then he is arguably a hero for cutting through the red tape for them (I should add that he does work in one of the poorer areas of the city).
My concerns here go beyond rorting the system, and misleading parents. Overdiagnosis also feeds opinions like those of Michael Savage and Denis Leary. That is, that we’re seeing huge numbers of people diagnosed as autistic, who aren’t really autistic; who just have parents seeking to place the blame for bad parenting elsewhere, and who want the extra money and resources that the government provides to families with diagnosed children.
My instinct is to see this doctor as a man exploiting desperate parents, for the money that comes with a diagnosis (either being paid by them directly or by the State which pays for their visits). It’s hard not to be cynical when you hear that he supposedly thinks all gifted children have Aspergers. But why would he risk his practice and reputation for the sake of more patients (and money)? Well it’s hardly inconceivable that a doctor would do such things (recent local news story as case in point).
So with limited information, but plenty of clues to “something” going on, I put it to you: If (and that is a big “if”) this doctor really is over-diagnosing autism, does that make him a hero, or a villain? If he is over-diagnosing, is he just a cog in the wheel of a messed up system that makes it too hard to get support, or is he part of the problem itself?