Susan's Blog

Tuesday, August 12, 2008

Life is Hard Enough

Statistics are a weird thing, and not always helpful. My mother always said, “You have more of a chance of getting kicked to death by mules than of being in a plane crash.” But somehow, the mule-kicking death seemed preferable and less likely. I could, conceivably, roll away from the mule-hoof and survive, whereas a plane crash…?

And remember that Susan Faludi statistic that said that there was an ever-diminishing chance that a woman in her forties would get married? Do you remember that this was eventually debunked? But how easy it was for us all to believe it. And how many middle age single women felt worse about their lives for it?

Now, when interviewing autism parents for my new book, I hear again and again “that statistic” about how autism marriages dissolve with far greater frequency than non-autism marriages. When I ask for the study that showed that, no one can point me to it.

Can anyone point me to that study? Kristina Chew, a brilliant young autism mom and St. Peter’s College professor has not found it. I kind of figure that if Kristina couldn’t find it, none of us actually could.

It doesn’t help to perpetuate this kind of urban legend. Life is hard enough.

And, incidentally, as I talk to people, it is fascinating to see that probably for as many people who feel that autism wrecked their marriage there are as many who feel that autism made them stronger.

And while we’re at it,

Life is hard enough for people with developmental disabilities and their families. So maybe Hollywood can find some other target to shoot at. Oh, sure, they do a send-up of all sorts of Hollywood genres in Tropic Thunder. That’s how Max sees it. Yet, I believe there is a particular cringe factor to using the term “retard” the way this film does. Yes, the feel-good portrayal of retarded people in movies does get kind of tiresome. That’s because we want to see disabled people as the multi-dimensional humans they really are, not just as someone to make fun of — as Tropic Thunder does — or as someone to merely feel sorry for.

14 comments

I found it last year, I’ll dig it up for you and email it to you. I found out it’s not a scientific study, it is a figure based on survey responses.

— added by ASDmomNC on Tuesday, August 12, 2008 at 8:34 am

Well, never mind, it looks like I found the same thing Kristina Chew found. Sorry. I hope you DO find the actual source of that figure.

— added by ASDmomNC on Tuesday, August 12, 2008 at 8:39 am

The National Autism Association has a grant specifically for single parents raising a child with autism. They spend every nickel, every year. We all chase that stat though – looking for what Mark Blaxill calls the OSOTEN, original source of the estimated number. It’s elusive.

K

— added by Kim Rossi Stagliano on Tuesday, August 12, 2008 at 9:38 am

The stereotype for children with developmental disabilities is unbelievable. This was the most shocking thing for me after my son was diagnosed with autism. After all, it is 2008. But the unkind comments, wow! He basically was treated by a few like he had a catching sexually transmitted disease or I either heard comments such as “autism? well, we always knew something was wrong with him.” Please!!! This is my CHILD.

— added by Sharon L. on Tuesday, August 12, 2008 at 10:30 am

My own personal belief? That any crisis in a marriage is a defining thing.

Infertility can bring a couple closer together, or drive them apart. It’s something that wasn’t planned, it’s devastating and hard and likely that the two parties involved will be affected differently.

Having a child diagnosed with Autism is going to be a crisis for many. It’s unexpected and there is a wide range of ‘stuff’ to work through on the parent’s end.

I don’t think in the relationships that fall apart that it was the fault of the crisis. I think it’s the crisis that brings out the weakness in the relationship.

If that makes sense?

— added by Jen on Tuesday, August 12, 2008 at 12:39 pm

Yes, that divorce statistic is indeed an urban legend. Two national population studies have shown that autistic children are no less likely than any other children to live in two-parent families:

Montes & Halterman, Psychological Functioning and Coping Among Mothers of Children With Autism: A Population-Based Study, Pediatrics 2007;119;e1040-e1046

Montes & Halterman, Characteristics of school-age children with autism in the United States, J Dev Behav Pediatr. 2006;27:379–385

— added by abfh on Tuesday, August 12, 2008 at 12:39 pm

So glad you wrote about this. Probably a year or so ago I dug and dug and dug to find substantiation for this number.

Just like Kermit sang in the Rainbow Connection:

Somebody thought of it
Someone believed it
Look what it’s done so far

I agree with Jen. If the marriage had weaknesses to begin with, autism can certainly magnify those weaknesses. It’s done that for us, while at the same time drawing us closer.

So far, so good..

— added by Judith U. on Tuesday, August 12, 2008 at 1:11 pm

I've always heard that statistic as well, but at a conference last year two MFTs who treat married couples with kids on the spectrum said they could not find it either. In fact, they found several studies that showed the opposite. Here's the info they provided:

While 50% of today’s first marriages end in divorce, having a special needs child does not appear to increase the risk (Wisconsin Longitudinal Study: 2001)

52% of respondents in one study (Scorgie & Sobsey: 2000) indicated that having a special needs child made their relationship stronger

Baskin & Fawcett (2006) found increased teamwork, communication, and problem-solving among couples with special needs children

I hope this is helpful.
Victoria

— added by Anonymous on Tuesday, August 12, 2008 at 1:31 pm

I think having a child with Autism has made my husband and I more of a team. On the other hand, it seems our son’s Autism is also the root of many of our disagreements aka arguments. We just take it day by day, and try to have a really good sense of humor about a lot of things.

— added by Bonnie on Tuesday, August 12, 2008 at 2:15 pm

Chance’s father and I broke up just as we were figuring out that he was “different” from other kids..just before age 2. That is also when I met my husband. I wouldn’t say the discovery put a strain on the relationship then. It was just a matter of time and place, though I do think the autism showing itself somehow made me see better what I really wanted. I do believe it has been easier to have a (sort of) outsider raise Chance instead of his father. I see now our family histories and, had I known, I may have been more hesitant to procreate with this person. I’m thankful things turned out the way they have. -Tina G. in MN

— added by Anonymous on Tuesday, August 12, 2008 at 2:33 pm

My husband and I have been separated for 18 mos., and will be divorcing soon. It’s all very sad, but regardless of whether my husband and I are together, we have to work as a team for both our boys. Period. Lisa

— added by Anonymous on Wednesday, August 13, 2008 at 11:12 am

I remember quite clearly hearing that “statistic” mentioned by the therapist who was working with our boys and us as a family, as we adjusted to their new diagnoses.

I also know that I married my best friend. And the stress of working through this has tested us in ways I never would have expected. Stress can bring out our best but it can also bring out our worst.

Another autism Mom I know once commented “how could autism NOT bring you closer together with your spouse?” I said nothing, feeling as though I had a “dirty secret”–the tough, tough times I was facing at home, with my marriage.

We soldier on. Our relationship is turbulent. It was not so “b.a., before autism”. I don’t blame autism. I think that life presents us with all kinds of challenges.

In our case, its been an important part of what is shaping us and we do WORK to be together. So far its turning out ok but man have we learned about our individual dysfunctions. And it is tough, tough work.

— added by Anonymous on Thursday, August 14, 2008 at 1:12 am

It is my opinion that couples who divorce, and happen to have a child or children with Autism, use the Autism as an excuse to divorce.
They would probably have divorced even without the Autism…

— added by Mom26children on Thursday, August 14, 2008 at 12:38 pm

Kim claimed that "The National Autism Association has a grant specifically for single parents raising a child with autism."

Really, which one is that?
It isn't Families First (specifically for couples)
It isn't Helping Hand Project (doesn't say anything specifically about single parents)

To see where the NAA money really goes, one can look at their tax returns.

http://dynamodata.fdncenter.org/990s/990search/990.php?ein=200032380&yr;=200612&rt;=990&t9;=A
http://dynamodata.fdncenter.org/990s/990search/990.php?ein=200032380&yr;=200512&rt;=990&t9;=A

Compare expenses on salaries, advertising, and promotion, to actual grants for single parents raising a child with autism.

— added by Anonymous on Friday, August 22, 2008 at 12:35 am