The Life That Chose Me

What I am going to discuss is the skepticism that exists within the autism community toward whatever the latest treatment/miracle cure is out there. I am from a decidedly behaviorist background, and was before becoming a parent. But my wife Jane was not. Jane, joining the growing legions of parents in search of cures, treatments and whatever else could help tried all sorts of different things.

First, there was the Cranial Sacral therapy. Next was the GFCF diet. Then there were the special tonics, herbs, essential oils roots and shoots from various alternative medicine doctors. And this is just the tip of the iceberg. There is auditory integration therapy, aquatic therapy, hippotherapy, healing crystals, megavitamins, facilitated communication, holding therapy, floortime, ABA, TEACCH, video modeling, social stories, light therapy, acupuncture, chelation therapy Sensory integration therapy, and I’m sure I’m leaving some out. A few years ago, someone said their son was cured of his autism by taking secretin, more traditionally used to treat digestive disorders. Not long after, doctors were besieged by requests for secretin and a black market developed for it.

You want to know how many research validated treatments there are for autism? Do you want to know how many treatments are considered well established empirically validated? I’ll tell you how many: NONE. How about “Probably efficacious?”

NONE.

No single treatment or treatment approach has passed muster to be considered empirically validated according to Division 12 of the American Psychological Association. In order to be considered empirically validated, the approach must:

-Have a manual documenting how to do it

- Have been validated through results showing clinical and statistical significance by at least 2 separate studies done by 2 unrelated researchers/teams OR have 5 or more single subject design studies done by separate and independent researchers.

- These studies must all be published in peer reviewed journals

-The results must show significant gains or advantages over placebo or other well-established treatments

I might be missing one criterion, but this is the gist of it. So far, none of my listed interventions for autism have passed muster. I’m guessing that social stories might be getting close to being “probably efficacious” which has fewer requirements as far as the number of studies published than that to be considered “empirically validated.”

There is a never-ending supply of charlatans and snake oil salespeople hawking their potions and notions, and none of these are cheap. Unbeknownst to me at the time, Jane bought $12,000 worth of various extracts, mineral waters and such, plus ordered a myriad of tests. We didn’t have the money then and are still trying to pay off that credit card bill, 2 years later. In addition, she took money out of her retirement fund in order to pay for some of this stuff. By the time I found out, we were on the brink of bankruptcy.

These frauds sell crap, preying on the concern of parents for their children. They guilt us by saying, “Wouldn’t you do anything to help your child?” When it doesn’t work, we are told we didn’t do it right which is shorthand for “we didn’t spend enough money.” I’ve seen the shit come and go. And everyone has something to offer…for a price. No one is giving this stuff away. They are impoverishing an entire class of people.

I am pissed at people who prey upon the fears of parents. No other single disability has been ravaged more by broken promises, and outright lies and deception than parents of people with autism. I am skeptical of every single treatment option, without exception. Behaviorist interventions can help with some behaviors, but it is not the final answer. Anyone who walks into my door, promising to SELL me a cure for my son runs the risk of bodily harm administered by a 2×4. Our family has been personally held up and robbed by people who are living very well at our expense. Impoverishing our entire family will not do anything to improve my son’s future.

When someone says they have a cure, a research validated treatment or a promise of recovery from autism, they are telling a LIE. They are no better than the merchants of terror who institutionalized (and molested) autistic children because of “refrigerator mothers.”

Look out for these lies:

-Anything that claims to be a cure. There is no cure for autism.

- “We treat the cause of autism, not the symptoms.” No one knows what causes autism. The one who finds it will win the Nobel Prize.

- “Scientifically validated.” There are no empirically validated treatments. Some have greater scientific support than others.

- “Scientifically proven effective.” See above.

- Testimonials by individuals claiming to have been cured. I have an article where a guy claimed to be cured of autism by smoking crack. No lie.

Here’s one on Marijuana.

Anything claiming to be a cure or treatment is suspect until proven otherwise. Don’t be fooled by the hype. Don’t be taken in by false promises.

Go sell crazy somewhere else. We’re all stocked up here.

dick