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Special Needs Digest


Truth and fact



The Facts About Truth

by Gary Evans

May 14, 2012—I was reading an article online the other day when I was suddenly reminded of the rather strange relationship that has existed between truth and fact since autism transitioned from being an obscure neurological condition into an epidemic. The article mentioned the widely known and often-repeated truth that 80% of married couples who have an autistic child end up divorced. Eight out of ten.

It’s a heartbreaking statistic which speaks to the emotional devastation that can result from being told your child is on the spectrum and the stress of having to deal with the difficult behaviors and the hours of extra work involved in raising a special needs child. I’ve discussed it with others in the autism community and wondered aloud if it played a role in the failure of my own marriage. Even when you try to view it objectively, it’s hard to imagine anything sadder: people who, more than ever, need love and support, finding themselves alone. It’s one of those brown-smelly-icing-on-the-crap-cupcake things where you get the feeling people who are already overburdened have been unfairly targeted by circumstance. It is truly one of the saddest parts of the whole autism experience.

And it’s not true.

I swear to you, the first five years of my life in autism, this was a given; it was an unquestioned truth that everyone accepted and repeated, with shaking head and sad countenance. It was an easy sell, too; it fit right in with the “pity and fear” paradigm that was prevalent among autism advocates at the time. No one questioned it, it was so obviously true.

Except that it wasn’t true. Not even kind of true.

A couple of years ago I wanted to write about this tragedy and, as a matter of course, went looking for the study or studies that I was sure existed documenting the 80% marriage failure rate. I couldn’t find it. I redoubled my efforts, to no avail. Occasionally, when I’m doing research, I’ll have an ‘uh-oh’ moment when a fundamental truth I had based a lot of ideas on unexpectedly turns out to have no basis in fact. Suddenly, a lot of divorced couples were still together.

It seems the 80% figure is a vaporfact, a piece of information which is ubiquitous and widely accepted simply because it is ubiquitous and widely accepted. To be certain, I contacted the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, MD. IAN acts as a connection between the community and researchers, collecting data via the internet which is then made available to the research community (if you or your child are on the spectrum, please consider joining) and they’ve become one of my favorite sources for reliable information. They responded by saying:

The 80% divorce rate figure that is often quoted for families with a child with autism . . . indeed did come out of nowhere—there is no evidence that this figure is based on any data at all.

You might be interested in a report we did recently on couple and family relationships that includes some of the latest data on divorce in families of children with autism or other disabilities.

The following paragraph comes from this report:

It is heartening to note that research has not shown that parenting a child with a disability always has an overall negative effect on the parents' relationship. Despite all the difficulties, couples with a child with an ASD have been shown to be no different from typical parents when it comes to reports of spousal support, respect for partner, or commitment.  Another encouraging fact: we could find absolutely no support for the 80% divorce rate for families with a child with ASD commonly cited around the autism community. A study looking at divorce rates for families of children with assorted disabilities found an average increase (over the rate for couples with non-disabled children) of only 5.97%. An Easter Seals' survey of families with a child on the autism spectrum, moreover, found parents of a child with an ASD to be less likely to have ever been divorced than the parents of a typically developing child.

 Wow. Not only were those divorced couples still together, they were getting along just fine, thanks for asking. (You may want to read the Easter Seals survey yourself, the divorce findings are on page 39.)

For years, no one I encountered ever questioned or denied the 80% figure. As far as we were concerned, it was the truth. More and more these days, the 80% “truth” is being replaced by facts in the popular press. However, it does still occasionally turn up, as it did in the article I read, stated like the gospel it once was.

There’s a lot of that going on now in autism—the supplanting of widely held subjective “truth” with verifiable fact. Ideally, of course “truth” and “fact” are synonymous. Early on in the epidemic, though, the absence of any real and/or reliable research left a gaping hole where the knowledge is usually kept and, unfortunately, a lot of “truth” was spun from imagination and hope, because not knowing can sometimes be unbearable for people. It wasn’t pretty. All kinds of truths emerged that had nothing to do with facts. There was the “Everybody Says It’s True So It Must Be” truth. The “I Read It Somewhere” truth. The “Jenny Said It” truth. The “I Heard It on Dr. Phil” truth, and all of its variants. And the “My Proof Is My Miracle Child” truth. That one generated a lot of book deals. It was truly the Wild West of Truth. Anyone with a half-baked idea and good line to back it up could set up a stand selling bottles of the truth and have ‘em lined up for a block and around the corner. If you were of a logical mind and a fan of the scientific approach, it was a difficult time.

Things are much better than they were. The research community has begun to catch up and order is being inflicted on the chaos. With so many truths and so few facts, every time the music stops these days, those truths without a fact to rest on are finding themselves out of the game. Good riddance.

Fact and truth have always been a lovely couple. Despite rocky times and rumors to the contrary, it now appears likely they’re going to stay together. I’d say the odds are 80%, but don’t quote me on that.


May 14, 2012

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