THE BLOG
03/18/2010 05:12 am ET Updated Nov 17, 2011

How Does It Feel To Be Told You Can't Have A Test?

America, how does it feel to wake up and learn that you can't have healthcare tests that you think you or your loved one needs? Welcome to the autism treatment world. Kinda sucks, doesn't it?

This week we learned that neither mammograms nor pap tests are as necessary as previously recommended. So there will be less testing.

I didn't know that the pap smear (scrape?) could lead to procedures that could injure the cervix. But I recall being a young woman and having my gynecologist perform a procedure that hurt like hell - "cauterization," he called it. That's Latin for "insert a small blow torch and press the on button." I was such a poor healthcare consumer it never occurred to me to ask what he was doing or why. The New York Times writes (HERE):

Dr. Iglesia said the argument for changing Pap screening was more compelling than that for cutting back on mammography -- which the obstetricians' group has staunchly opposed -- because there is more potential for harm from the overuse of Pap tests. The reason is that young women are especially prone to develop abnormalities in the cervix that appear to be precancerous, but that will go away if left alone. But when Pap tests find the growths, doctors often remove them, with procedures that can injure the cervix and lead to problems later when a woman becomes pregnant, including premature birth and an increased risk of needing a Caesarean.

Was I one of those women for whom the cauterization was unnecessary, or did that doctor save me from cervical cancer? I have no idea. If you know a woman who died of cervical cancer, these new guidelines will set your hair on fire. If your breast cancer was found on a yearly mammogram I'm sure you're angry too. Understandably so. We each bring our own perspective and needs to this healthcare equation.

In the autism world, there are myriad tests and treatments that are helping ameliorate behaviors and boost progress by addressing the medical conditions that can cause pain, confusion and poor brain functioning. Think of how you feel when you have PMS or a migraine. Could you sit in school all day or take the LSAT's or make a presentation at work if you felt very sick? Of course not. Now try to do it when you have little or no speech to convey how you're feeling. You might scream, or kick or scratch or bang your head.

Some of us know families whose kids have lost their diagnosis and are mainstreamed in school and headed toward full, independent living because of these tests and treatments. For others, this treatment can mean the difference between life in an institution, sedated on powerful medications and life in a group home, among peers and within the community.

And yet - the vast majority of us have no access to this autism medical world because the "powers that be" who control what's recommended and covered tell us the tests fall into the category that is the insurance kiss of death, "not medically necessary." For every Dr. Tim Buie at Mass General Hospital treating the GI problems associated with autism, there are a hundred GI docs and pediatricians who will laugh you out of their office for suggesting that food can affect functioning and behavior. Even the one treatment that is considered scientific, ABA therapy, is often off the table for us when it comes to insurance.

This weekend, The Chicago Tribune will run an article about autism treatments from skeptical point of view. Even after interviewing parents who have changed their children's lives for the better, they'll focus on the few controversial treatments that always get media attention and ignore the real progress. I'm not sure what their agenda is, and why learning that some kids are improving and even losing their autism diagnosis isn't considered worthy of a ticker tape parade on Michigan Avenue.

When you read that article (assuming anyone reads The Trib any longer) think of how you feel knowing that you, your wife, daughter, sister is also losing medical care that could help ensure a healthier, safer life.

By the way, I can help those of you wondering about your next mammogram or pap test. There are three magic words that we in the autism world know all too well: Out of pocket.