April 1st marked the beginning of Autism Awareness Month. As a parent of an (newly diagnosed) autistic child how could I possibly feel ambivalent about that? Well, first let me make clear my right to change or even reverse my feelings on this at some point in the future. This is just my initial reaction to both AAM and the new CDC report about autism prevalence.
According to the Autism Society this is what Autism Awareness Month is all about:
“The United States recognizes April as a special opportunity for everyone to educate the public about autism and issues within the autism community.”
I can get behind this wholeheartedly, but what is meant by “educating the public”? Are we educating the public about the varying severity that can occur within Autism <OK>, about the struggles that people and families of those with Autism (of any severity) face? <OK>, or are we hoping to get the symptoms out there so more people can be diagnosed?<Ambivalent>.
Before you grab the pitchfork, and warm up your “angry fingers”, let me explain. Years ago, when first reading the signs and symptoms of Autism Spectrum Disorder, I was amazed at how many people I knew that fit one or more of those definitions. For example, my oldest son Chris played with a piece of an action figure (its name was “torso man”, so I’ll leave it to you to figure out which piece) for hours at a time. He did nothing but spin it with his hands over and over. At 17, he can still tell you exactly where that toy is. To this day he becomes incredibly agitated if my Grandmother gives anything of his away, even clothes he hasn’t been able to wear for years. Both of these behaviors are listed in the signs and symptoms of ASD. Do I feel he needs to be diagnosed with Autism? Absolutely not, and neither would you if you met him. My second son Jonathan also exhibits some of the signs, and again he would not benefit from diagnosis or therapy. I could list quite a few others who fit this example.
To put it simply I am afraid that “over diagnosis” of Autism will eventually become harmful to those who actually ARE autistic. We have seen many examples of this. Bi-polar disorder and ADHD being some that quickly come to mind. I was in a group meeting for drug addicts a couple of years ago when the subject, for some reason, turned to ADHD. A woman quickly pronounced that ADHD was “bullshit” and that “those kids just need a good ass-whoopin.” (I’m from the South in case you didn’t notice 😉 )She stuck by this statement vehemently too. Having a child that was diagnosed ADHD I took offense, and proceeded to…..discuss this with her. However, after I cooled down, I realized that I couldn’t really blame her for her opinion. Because ADHD is so quickly diagnosed many of the children labeled such really do in fact “need an ass-whoopin”. It was the over -prevalence and over-saturation that caused her to have that opinion. No doubt she had been exposed to children that had been mis-diagnosed.
Here’s an ugly truth that no one wants to talk about- We live in a society of labels. Everything, and everyone needs one, it’s this decades “must have”. No parent wants people to think that their child is ill-behaved because of their lack of parenting skills. It’s much easier to say he has a “disorder”; and if you want a diagnosis, please understand you can get one. We talk about Dr. shopping with prescription meds, but it also happens with medical diagnoses.
If you have any contact with the “public” you are aware of how quickly public perception can change when any mental health diagnosis becomes too widely used. So if the point of “awareness” is to make the public more sympathetic to the plight of those with autism and their families, we must be very careful as to how we go about it. Sure I want those who need the diagnosis, and the services that come with, to receive the help they need. If you’ve read my post about Michael’s journey to diagnosis, you’ll see that it wasn’t easy for us and I am supportive of that. But already when you plug “over diagnosis of” into Google, Autism is one of the first 4 suggestions that come up, along with ADHD, depression, and Bi-polar disorder. I admit I am sensitive to this because of Michael’s long standing diagnosis of ADHD and my own mental health diagnosis.
*As always, please feel free to comment. I welcome discussion and would love to hear your opinions and/or experiences*