Okay, this is going to be a controversial post with the potential to make a lot of people a lot of mad. But, after much contemplation, fueled by relentless personal experience, I feel very strongly that this is the right thing to do. Today, on Autism Awareness day, I’m going to assert the following position: our society is too aware of autism. And way too often, autism is used to shield parents from what’s actually going on with their children. So, before I get into the controversial part, let me get the facts out of the way. Autism is a real and serious public health issue. While we seem to be getting some better guesses, its causes are still pretty much completely unknown. The best way to treat autism is intense and personally tailored therapy. Autism diagnosis has grown rapidly over the last couple of decades, and more rapidly over the past couple of years. Some of this seems to be due to increased awareness. Some seems due to a yet to be discovered cause. It is not due to cold and non-responsive mothering, which was an early and long ago repudiated suspect. But something else is no doubt going on, contributing insidiously to this recent rise. It keeps happening to me over and over again, and I’m done with merely grumbling to those around me each successive time.
I assess hundreds of children each year, many with multiple types of language delays, and many with concerns of autism. I get several very valid autism referrals each year. I also get several referrals from more borderline cases. What makes identification of all of these autistic kids more difficult, however, is the fact that I also get multiple referrals from parents and professionals alike – and I’m carefully choosing to put this bluntly – who want these children to get the label. Yes, this happens. And inevitably, it hurts all of these children.
The kids vary. Sometimes it’s just kids who are a little “weird.” Sometimes it’s kids with families with a history of known or suspected abuse. Other times diagnosticians will get referrals from parents or family members of a child with a different diagnosis who think that autism is somehow less severe. Sometimes no one knows exactly what’s going on, and so the finding of any label at all satisfies the human need to know. Additionally, I have seen, over my many years, parents emulating the actions of seeking the joining of a friendly and supportive community, not only of parents with autism, but also of community members who give extra care and compassion toward parents of disabled children. I’m sorry, but it happens.
And so, “What’s the harm?” some may ask. There are many harms. One is the damage done to with kids with actual autism, whose intense needs are watered down by professionals providing services to more and more kids. The expense of all of this inevitably makes it more difficult for parents, insurance companies, and society as a whole. Another harm done is to the children themselves, many of whom do have disorders that aren’t being adequately addressed due to the mislabeling’s diversion. It’s possible that many may develop more autistic behavior simply because of the expectations of those around them, which then ultimately become their own expectations. I’ve also seen caregivers and educators intentionally refuse testing, ignoring crucial information, afraid that the testing may conflict with a diagnosis received in a 15 minute consultation with some general practitioner somewhere. Yet another harm is the conformist pressure placed on kids who may be singularly talented, to be more like everyone else, while suppressing their desires which may one day benefit us all. We tend not to want our children to be considered “weird,” and autism provides a possible excuse, with accompanying treatment that could be used to target behavior that is really more of just a different behavior than a problem behavior.
To conclude, I’ll quickly address a couple of anticipated responses. Isn’t it better to over diagnose than to under diagnose? Isn’t it better to be safe than sorry? Well, the best thing, actually, is to identify those behaviors which are truly disordered, and work on those. Any best treatment doesn’t go after the label, it goes after the deficits. Labels sometimes obscure individual needs for the sake of simplification.
And, I also anticipate that people will think I’m biased. I’ve come to a conclusion, and I’m selectively cherry picking those incidents that confirm my conclusion, while ignoring those that don’t. Yes, I am biased. But we’re all biased. The one thing I’ve got going for me is that I admit it.