Wednesday, April 20, 2016

Is Autism Overdiagnosed?

This question has been percolating in my mind for a while. I realize it's a hot-button issue; I realize there are people all over the place with this; I realize what I'm writing is an opinion and that I'm speaking from my limited experience and knowledge.

That being said, I feel as if I can't stay silent anymore.

I've noticed a trend that I've encountered via people I've met from "autism world" online and in real life as well. Children are being diagnosed with autism early and often. They are being diagnosed by professionals who give them a provisional diagnosis to get them services, who sometimes acknowledge that the child may "fall off the spectrum." They are diagnosing children before age 2 and preschoolers who may have some great skills (i.e. pretend play, eye contact) but a few red flags that put them over the proverbial line. They are (thanks to the removal of PDD or Asperger's as official diagnoses) throwing all manner of behaviors into the ever-widening autism diagnosis pool and waiting to see what sticks.

I used to think this was a wonderful thing. My own son was diagnosed before age 2 and began getting services that I believe were certainly beneficial.

I used to think this was a godsend. Diagnose first and ask questions later. Why care about labels? Get your kid any and all help they need.

Now, I am wondering if, in our move to respond to decades of misunderstanding and dismissiveness about autism, the pendulum has swung too far the other way. And in the process, we are doing some families a great disservice.

I sincerely dread sounding like one of "those" people. The last thing I want to be is thrown in with the types who say autism is mostly a result of bad parenting, lack of discipline, and so on. I do wholeheartedly believe that a child will benefit from a diagnosis if they are having a significant amount of trouble functioning in everyday life. That may mean behavior or communication challenges as they relate to daily life activities, self-care, school, and getting along with family and friends.

But where oh where do we draw the line?

Ethan once did a playgroup with another little boy who was diagnosed as on the spectrum. He was the same age; a wonderful little boy who was incredibly imaginative. During play sessions we often spent a lot of time chasing Ethan away from the light switches and encouraging him to play. This was not an autism I'd seen. This boy seemed a little resistant to change (as many preschoolers are) and liked to take his socks off (a sensory issue?). Other than that, I had to squint to see his issues. When you are related to someone with severe autism, this kind of thing is always mind-boggling. I have to make a concerted effort not to be minimizing, because I know I'm not there every moment and don't see all of the challenges. I will say this: I know that this boy "lost" his diagnosis not long after, and was actually serving as a peer model in a preschool/special ed. classroom.

This isn't an isolated story. As I see and hear more stories about this, I grow concerned. Why? Some might ask. Isn't it better to throw treatment at them early and often?


But I'm also considering:

1) Is this trend of over-diagnosing leading to some seriously skewed numbers that are creating borderline hysteria from the likes of Autism Speaks and the anti-vax'ing community? We HAVE to look at this more closely. People are panicking about an autism "epidemic." Is sounds like I'm over-simplifying, but: How many of these autism cases would have been a diagnosis 30 years ago? Have we begun to look for autism with too big of a magnifying glass? When did "quirky" become something that automatically had to be addressed and treated?

2) There are a limited amount of resources out there. When we pool the majority of our services in one area, someone else is losing out. And it could be someone very much in need of help. In our state (and many others), adults with autism and their families face huge obstacles. When they "age out" of the system, there are few options (i.e. group homes, employment opportunities) available. Aging parents are doing their best with little support to care for people with sometimes very significant challenges. Even getting something like respite care often requires a waiting list and years-long wait. I've asked it before and I'll ask again: Where are the services for people with autism once they grow up? We can't focus all of our attention on the children. There are people in real need; desperate need.

3) Sometimes, with an early or provisional diagnosis, there is a real loss: letting our kid be kids. Oh, how I know this from experience! There is something that happens when your child gets an autism diagnosis. There is a tendency to see everything through that lens. Every behavior, every quirk, every meltdown, has to be autism. Someone online recently lamented the way her recently diagnosed (mild autism) two-year-old's hyperactivity at an aquarium visit -- the way he didn't want to sit still and ran from one thing to the next. That's a lot of two-year-olds. Sometimes I think kids with special needs lose a little bit of their childhoods. It's easy to see things that need to be "fixed." With autism you're told the (somewhat erroneous) view that you have to pour all the therapy you can into them before the "magic window" closes and the chance of them losing their diagnosis fades altogether. Maybe some of these kids diagnosed with borderline autism would benefit very well from days at the park rather than time in a speech therapist's office. Maybe your child needs to be taken places to learn to adapt to new situations (an aquarium, museum, zoo) rather than sitting at a table and being trained to look people in the eye (something typical preschoolers don't always do).

I realize this may come off as dismissive, maybe even ungrateful. My son did benefit from early therapies. I go back to the earlier statement: is the child having a significant challenging functioning in everyday life? I couldn't bring Ethan to activities like playgroups when he was Chloe's age. He couldn't sit at all; his anxieties were too great; I had to wrestle him to get him to stay in the room. This kind of issue, yes, needs support.

Yes, we have to fight for our kids. But most of all we need to love them, to know what they need, to help them to get along in this world without trying to completely mold them into something else. Sometimes we need services. Sometimes we need to let go. Sometimes we need to say no, or not now.

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