Autism And Divorce

8 Mar

What is the divorce rate among autism families?

Let’s set aside the fact the this is a very poorly worded question, and let’s just go with the notion that is likely to be pondered by typical peeps on the street – what is the divorce rate among couples who have a child (or children) with some sort of autism spectrum ‘disorder’ diagnosis?

Many bloggers have apparently attempted to look somewhat earnestly at the question – and they often come up empty handed:

Lisa Jo Rudy
“But so far as I can tell, having researched the topic in all the usual places plus a few more (personal connections to reearchers in the autism community), there is no basis for these claims.”

Kristina Chew
“While I have often seen the figure of 80-85% referred to, I have not found a good source for this figure.”

Patricia Robinson
“I can’t find a study that shows that rate.”

But for everyone of those who don’t turn anything up, there appears to be a glut of what looks more and more like internet urban legend similar to the following:

On Oprah
“The stress of raising an autistic child also takes a toll on many marriages. Autism Speaks, the nation’s largest autism advocacy organization, reports that the divorce rate within the autism community is staggering. According to their research, 80 percent of all marriages end.”

I have news for Autism Speaks – 100% of all marriages end, eventually.

In all practicality, there are probably way too many internet discussion forum threads, blog articles, and statements from anti-autism advocacy organizations to really quantify, so I’m not even going to pretend to try. Heck, this is probably one reason this particular urban legend persists – the fallacious logic of appeal to popularity can be strong with the masses.

Let’s just round out that fallacious logic, of truth due to popularity, with a comment from botulinum toxin injection-loving Jenny McCarthy, which is really not much more than ascribing importance to her personal experience (appeal to anecdote).

Soon after Evan’s diagnosis, Jenny says the stress of raising a child with autism began to take a toll on her marriage. An autism advocacy organization reports that the divorce rate within the autism community is staggering. According to its research, 80 percent of all marriages end.

“I believe it, because I lived it,” she says. “I felt very alone in my marriage.”

Source

Well if Jenny believes it, it must be true (and especially so, since she apparently said this on the Oprah show).  😉

Okay, enough already. It’s clear that there is probably a lack of real quantifiable information “out there” about divorce among families with autistic children.

However, Easter Seals (in conjunction with the Austism Society of America) did look at the question (quite recently I might add: July, 2008 – Report Published in December, 2008) as part of a larger “Living With Autism” study. You can download the report (registration required) here.

Even autism super sleuth, Kim Stagliano, over at AoA noted this ‘research’ when it dropped (apparently whining about unsurprising content):

“Click HERE to read more useless information that any parent of an autistic child would have told you for a large coffee and 15 minutes of respite time. Is this what we can expect from the partnership of ASA and Easter Seals?”

Kim obviously couldn’t be bothered with some of the report’s details, really didn’t care, or just skimmed the media story, and didn’t even read the actual report (personally, I’m voting for this possibility as likely). Of course it’s also entirely possible that Stagliano’s absence of mention about the divorce rate information in this survey, is due to lack of interest in the subject, or some other reason altogether.

Pleasantly surprising however, following the AoA post, is a small, yet more astute portion of commentary on AoA (yes, you read that correctly), authored by “Gale”:

It also sheds light on an often misreported urban legend of higher divorce rates for families with autism concluding “Families living with autism are significantly less likely to be divorced than families with children without special needs. Among those parents with children who have Autism Spectrum Disorder and who have been divorced, only one third say their divorce had anything to do with managing the special needs of their children.”

Good on Gale for adding a little to the story here!

So what numbers were actually reported for divorce rates by Easter Seals?

No Special Needs (N=866) 39%
ASD (N=1573) 30%

30% ??? Not only is that 25% lower than the families with no special needs children (the ‘control group’) in this survey, it’s nowhere near the mythical 80% number.

But let’s be clear here. The Easter Seals report, while perhaps interesting, is not a scientific study.

While it is a fairly large survey, and one that contains a sizeable ‘control’ group, it has problems that make it very limited in its ability to lend support for conclusions about reality.

First of all, there is an obvious likelihood of selection bias. The survey respondents were solicited via an e-mail invitation from Easter seals, ASA, or Harris Poll Online, which means the respondents were likely to be already involved (to some degree) with at least one of those organizations (enough to be on some sort of contact list), and regular internet users. The survey respondents may, or may not be truly representative of parents with ASD children. The ‘control’ group may not even necessarily be representative of the parents of children with no special needs (the U.S. divorce rate for married couples with children is probably closer to the U.S. average of 48%).

There is evidence of one possible effect of such selection bias, and that is that this survey’s demographic profiles are not consistent with the most current autism epidemiology at all. A full 55% of the parents of ASD children were reported to be parents of autistic children, as opposed to 45% of the parents whose children were diagnosed with PDD-NOS or Asperger’s. This is fairly divergent from the current descriptive epidemiology which puts Autism at about 33% of the total diagnoses, and 67% for PDD-NOS and Asperger’s combined. Such a skewing toward autism diagnoses could represent any number of things (diagnostic inconsistency for example), but I think it’s certainly possible that selection bias (specifically, “self selection”) is at play here – e.g. parents who are already connected in some way to Easter Seals or ASA, may simply be more likely to be the parents of children with an autism diagnoses, and parental participation in such groups by parents of children with PDD-NOS and Asperger’s diagnoses may be considerably less, because affiliation with such organizations simply may be a lower priority for those parents. If this is the case, it would inadvertently exclude representation of a significant portion of the question’s target parent population. If the question’s target population is not representative, is the information accurate? It’s hard to know.

In the context of a sense of scientific rigor, there just isn’t much here. Surveys, and parent reports are just that, reports. As an example, diagnoses were not confirmed with any standardized and normed instruments that I can see. And, to be fair, scientific answering of the divorce rate question wasn’t really an objective of this survey in the first place.

I realize that a skeptical look at both the urban legend of 80% or higher divorce rates and the reported lower divorce rates from the Easter Seals/ASA survey doesn’t really provide any kind of clear conclusion. There will be those who believe that anti-autism advocacy groups like Autism Speaks have some sort of authority on the subject, and they probably won’t see anything wrong with the perpetuation of what looks more like urban myth for pity. There may also be those who believe that parents of ASD children are less likely to divorce (based on this survey, or their own beliefs), ascribing some sort of family-strengthening magic to having special needs children in and of itself.

As for me, I tend to think the actual divorce rate among autism families is probably pretty close to whatever the average is for all families. All families, and all marriages, have sources of difficulty, conflict, and compromise. They all have good too. Is there any reason to think that parents of ASD children are really that much different than most parents when it comes to divorce overall, one way or the other? So far, I haven’t seen any good scientific evidence to make me think so.

Some readers may think of me as one of the Evil Neurodiverse League of Evil Bloggers, and be wondering why I wouldn’t jump on an opportunity to say that having an autistic child is some awesome family-strengthening thing that makes a man more happily married than a father with typical children. I’m sorry to disappoint in this regard – while possible, and undoubtedly true for some, the science just isn’t out there to support the notion that such a statement is applicable to couples with autistic children in general. If you were hoping for something potentially more romantic, or something as equaly tragic (and real) as an 80% divorce rate among autism parents, I recommend:

Dr. Horrible’s Sing Along Blog.

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25 Responses to “Autism And Divorce”

  1. Navi March 8, 2009 at 01:36 #

    husband had a therapist give him the 80%…

    I actually wonder what the rate of divorce nationally among families with children is… the national divorce rate is quite largely affected by some early marriages, without children that end in early divorce… Then you have all those families with children that were never married to begin with… a cursory look at the data on the CDC pages doesn’t really tell me anything…

  2. abfh March 8, 2009 at 01:42 #

    The divorce rate for parents of autistic children is indeed close to the average for all families. 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

  3. Bunny March 8, 2009 at 01:54 #

    I’ve heard that “autism divorce rate” thing a million times, so this is very interesting. If somebody does do an actual study on this, I’d also like to see them compile the reasons (was the divorce just because the kid is autistic? because the parents can’t get on the same page re: treatments? because there’s an autism-related financial strain? or was it coincidence and nothing to do with autism?).

    It’s a bit pathetic to see children used as scapegoats (i.e., if the kid wasn’t autistic, the marriage would have lasted forever!). I guess if Jenny McCarthy’s son hadn’t been vaccinated, his parents would still be happily married. [cough].

    Does the US Court of Federal Claims have an Omnibus for vaccine-induced divorce?

  4. Joeymom March 8, 2009 at 03:39 #

    The current rate of divorce for parents of autistic kids that I know, and that I know their marital status, is currently 0%. How’s that for “reporting”? However, we do remain at 100% for “exhausted.”

  5. andrea March 8, 2009 at 05:16 #

    Divorced, but it wasn’t anything related to autism that did it. (see above story)
    andrea

  6. Joseph March 8, 2009 at 06:09 #

    There’s another statistic (probably also an urban legend) that says marriages where one partner is autistic also have an 80% chance of ending. If I were to assume both statistics are correct simultaneously and independently, I would have to conclude, with statistical confidence (p < 0.04) that I’m not married. My wife is not going to like that 🙂

  7. Nicky March 8, 2009 at 10:26 #

    Since my son’s diagnosis, all I have ever heard is the 80% bull.
    I would hazard a guess that the opposite would be more relevant. Myself and three friends, plus many more asd parents that I know through my work, have made the choice to stay together.
    This is not down to having amazing, perfect marriages, but because providing the best care for our (not just asd) children requires the two of us. You know, through better or worse etc.
    Of the parents that I know who are divorced, although they would recognise that asd brings extra challenges to the equation, I also think they would have a tough time blaming their children.
    Divorce rates are high at the moment, almost half, so surveys like these are quite meaningless, and only add to the impression that having a child with an asd means your life is a)over and b)crap. Yes it is sometimes, I think we can all agree with that, but do these people not have anything better to do than whinge about our kids? *hitches bosom*

  8. Lisa March 8, 2009 at 13:01 #

    I suspect one confounding aspect of this issue (and many others) is “what do you mean by autism?”

    Autism Speaks’ version of autism seems not to include high function autism or asperger syndrome, whereas I generally use “autism” as shorthand for “autism spectrum.”

    It wouldn’t blow my mind if parents of children with full, classic autism were more stressed than parents of children with HFA or AS. I mean, how stressed can we get over the fact that our kid prefers art museums to baseball games?

    The biggest stressor related to autism, for us, is the reality that the schools in the US (and I assume the UK too) simply don’t teach our kids. As a result, we’re homeschooling Tom while also trying to be self-employed… and the stress of time and money management can get rather intense!

    Lisa (www.autism.about.com)

  9. The Gonzo Girl March 8, 2009 at 13:46 #

    There’s been a discussion on this on Sharon’s blog last year, I felt I had to point out, that my parents also got divorced, but it had nothing to do with me. So even IF parents get divorced, it’s not necessarily, because of their kid’s disability.

  10. Bunny March 8, 2009 at 14:56 #

    @Lisa

    My son has Asperger’s syndrome, and our stresses are not trivial. Perhaps some kids with Asperger’s simply “prefer art museums to baseball games,” and certainly a non-issue such as that wouldn’t induce stress. However, the kids I know with Asperger’s, including my own, have major, major issues getting through each day.

    My son may be highly verbal, but he is in special ed, cannot control his behavior in social situations or frustrating situations, cannot express feelings and emotions, and cannot do much of anything for himself. He is often screaming, whining, and complaining by 6:30 am, and this can continue off-and-on past bedtime. He’s a wonderful child and we love him dearly. He amazes us every day. But Asperger’s syndrome in our house is very, very stressful. We do our best to help our son in all the ways he needs help, but it’s a one-on-one, hands-on, 24/7 effort.

  11. Lisa March 8, 2009 at 16:23 #

    Bunny – I’m not suggesting that Tom’s autism involves no issues; if it didn’t, he’d just go to public school and there’d be no need to homeschool.

    But I do find that, at least for us, it’s possible to teach an awful lot of the skills of life (everything from making breakfast to washing sheets to practicing clarinet).

    Tom really has no friends, though we’re working on social skills… but that’s not a particular source of stress on a day to day basis.

    He’s way behind in math, has somewhat delayed speech and an idiosyncractic voice. He moves awkwardly, and his physical skills are delayed. His math is way behind. But again, none of that causes his parents stress in the usual sense of high anxiety or sleeplessness.

    So while there is stress, and a portion of that stress comes from the autism, it’s not Tom, the kid, who’s causing the stress. And the more that we go to a DIY style of education for our son, the less the wide world can impose stress upon us (through bullying, red tape, outrageous costs, etc.).

    Lisa

  12. K March 8, 2009 at 16:57 #

    I know parents of autistic children only through my son’s school. There are 9 children in his classroom and I’ve met all the parents through various functions at the school (autism school). Marriage rate of the children?: 100%. I’ve never actually met a divorced parent of an autistic child. I know they exist, because I’ve read about them over at AoA, but the run of the mill, average “Joe” set of parents I meet in everyday life are all still married.

  13. Do'C March 8, 2009 at 17:56 #

    @Lisa

    Autism Speaks’s version of “autism” seems purposefully confusing to me.

    Autism is a complex neurobiological disorder that typically lasts throughout a person’s lifetime. It is part of a group of disorders known as autism spectrum disorders (ASD). Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined.

    Source

    First it’s stated that “autism” is a subset of the ASDs, then in the same paragraph, claimed that diagnosis prevalence for “autism” of 1 in 150 (the ratio applicable to ALL ASDs). The actual ratio for “autism” as Autism Speaks has defined it, is about 1 in 464 (Fombonne, 2006 – which found a ratio of 1 in 154 for ALL ASDs).

    It’s difficult to see reliability in information from Autism Speaks, and the mythical divorce rate (if they’ve played a role) is no exception. There’s just no science to support such pity-driven, fear-inducing, autistic-devaluing nonsense.

  14. Kathleen Seidel March 8, 2009 at 22:47 #

    Lisa & Bunny, you’ve both got me thinking about Tolstoy’s observation that “Happy families are all alike; every unhappy family is unhappy in its own way.”

  15. Bunny March 8, 2009 at 23:56 #

    It’s correct to point out that everybody’s situation is different. For example, schools have failed Lisa’s son, while school has done wonders for my son. Our public school is one of the things that actually reduces the stress in our lives. This, however, is subject to change! Who knows how the teacher next year will handle things, or if the principal will leave and be replaced by an unsympathetic someone. But these same issues haunt the parents of typical kids.

  16. Jen March 9, 2009 at 12:00 #

    I’ve always taken the 80% figure with a grain of salt (yes, I did get divorced, and no, it had little to nothing to do with autism), only because when we had our triplets, we were also told that there was an 80% divorce rate among higher-order multiple birth families. Later, when my daughter was in the hospital due to cancer (she’s fine now), one of the hospital social workers told us that there was a 75-80% chance of divorce among families dealing with pediatric cancer, and then much later, when one of my friend’s children passed away, she was told that there was a 90% chance of divorce after the death of a child. I’ve always found it kind of odd that the same number pops up no matter what you’re dealing with.

  17. Joe March 9, 2009 at 18:57 #

    Their data is flawed. Yes, I’m autistic and so is my son. Yes, I’m divorced from his mother. But I bet they would include me in the stats even though we divorced in 2002 and both my son and I were diagnosed in 2006. And the divorce had nothing to do with any autism related issues.

  18. Calli Arcale March 17, 2009 at 18:53 #

    What a horrible thing that they told your friend, Jen. “I’m so sorry you’ve lost a child; now face the near-certainty that you’ll lose your spouse too.” And with absolutely no evidence to back it up! That sort of thing really cheeses me off, especially since there is the very real risk of a self-fulfilling prophecy. During stressful times, there is more risk of a relationship falling apart, especially if there are already problems. But there is also more chance of it becoming stronger, because with more stress, there are fewer opportunities to hide from the problems and they can actually get dealt with. Sometimes a crisis can get a couple talking — really talking — for the first time in their lives, and the shared strife can give them common ground. When it involves a kid, it can also give them a powerful motivation to settle their differences. But if you tell them that 90% of marriages in that situation end in divorce, aren’t you suggesting that it’s not really worth the effort? Very sad.

    I know people whose kids are autistic, whose kids have had cancer, and who have even lost kids. Of all of those, I know only one couple who got divorced, and it had nothing whatsoever to do with the children’s various learning disorders.

  19. Calli Arcale March 17, 2009 at 18:53 #

    Whoops — hit “submit” too quickly. The divroce had nothing to do with the children. Indeed, arguably the marriage stayed together as long as it did only because of the children and a sense of responsibility to them.

  20. T@SendChocolate April 2, 2009 at 10:39 #

    I have heard the 80% bandied around, too. Based upon that number…

    My husband (who has mild Aspergers) and I like to joke that we are “statistically not married.” We have 3 children, and all three are on the Spectrum in varying degrees. They are all high-functioning, but I homeschool because the school district cannot meet my childrens’ needs. Certainly, life with HFA/Aspergers can be stressful.

    I am going on 20 years of marriage, and we are happy. The rest of the joke is since we are “statistically not married” that explains why it’s good in the bedroom department. See, we are still just dating and the excitement never left.

    That’s our story, we’re stickin’ to it.

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  1. Child Custody, Visitations and Divorce - March 8, 2009

    […] Autism And Divorce Let’s set aside the fact the this is a very poorly worded question, and let’s just go with the notion that is likely to be pondered by typical peeps on the street – what is the divorce rate among couples who have a child (or children). […]

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