Update on autism and divorce

by Benison O'Reilly on Thursday, August 5th, 2010

We’re moving to a bigger and better site!

Just not yet.

Seana and I are working on our new standalone blogspot for the AAH.  We’ve got it up and running, but it still needs lots of work.  We’re also planning to move all our old posts over to the new site’s archives, which will take a while, so expect it to be up and running in a couple of weeks.

In the meantime I stumbled across this report of another study on autism and divorce. Back in May I reported on a study that found that the rate of divorce between parents of kids with ASDs did not differ significantly from the divorce rate for parents of typically developing children, exploding that old 80% divorce rate mythology.

This new study,  published in the Journal of Family Psychology, and reported in the LA Times is less encouraging. Researchers investigated 391 families participating in the Adolescents and Adults with Autism study and compared them with other demographically similar families whose children were developing typically. The divorce rate among couples raising a child with an ASD was  nearly twice as high as the  rate for the control families (23.5% vs 14%).

The risk of divorce was higher for families that had one or more older siblings in addition to the child with ASD (which unfortunately exactly describes my situation, although last time I checked my husband and I were still talking!) , although interestingly not for families who had more than one child with an ASD, or a more severely affected child with autism.

This suggests that ASDs may add some additional strain to marriages-an unsurprising finding-but in this study 75% of ASD marriages remained  intact, which suggests the odds are still in our favour.

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Divorce – another autism myth exposed

by Benison O'Reilly on Wednesday, May 26th, 2010

An 80% divorce rate for parents of kids with autism—that is, roughly double the normal rate—is often quoted as folklore.  It’s a good disaster story which garners sympathy and media attention. But is it true?

No, if you believe the researchers at the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore.  And I’m inclined to believe them.

In a study unveiled at the recent International Meeting for Autism Research (IMFAR) in Philadelphia, researchers examined data from the (US) 2007 National Survey of Children’s Health, including a nationally representative sample of 77,911 children aged 3 to 17 years. They found 64% of children with ASD were living in a traditional family structure (two-parent biological or adoptive) compared with 65%  of children without an ASD -that’s pretty much on par.

These findings held even when the researchers statistically controlled for other factors that could have affected family structure, such as socioeconomic status or demographics, and the reported severity of a child’s autism.   Only when researchers considered co-existing psychiatric and other problems (such as ADHD or serious behavioural problems) in children with ASD, did they find the likelihood of living in a non-traditional family structure (a two parent household with step-parents, a single mother or father, other relatives, or other family types) increased slightly.

The lead researcher, Brian Freedman, reported that he was motivated to conduct this research after hearing the oft-quoted 80% split-up rate among parents of children with autism. However, when Freedman searched for the study behind the mythical 80% figure he never found one—it appears to have originated from pure speculation and then been resurrected again and again, with no evidence to back it up.

As Seana said when I sent her the link to this study, ‘I always thought that 80% figure was bunkum.’

Certainly my experience has been that the majority of autism marriages remain intact. Sure, I’m aware of a few divorces, but nothing to suggest that autism diagnosis = matrimonial train wreck.  And in some  cases I’m aware of there have been extenuating circumstances, such as psychiatric diagnoses (bipolar disorder or, unsurprisingly, Asperger’s) affecting one of the parents.

This is good news for all ASD parents and, of course, for their children. It is far easier to face the challenges of raising a child with autism if there is another parent alongside you to assist.

The study abstract is available below:

http://imfar.confex.com/imfar/2010/webprogram/Paper6087.html

Or for more commentary at WebMD see:

www.webmd.com/brain/autism/news/20100519/autism-famlies-high-divorce-rate-is-a-myth?src=RSS_PUBLIC

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Autism travels to Hong Kong and Rockhampton

by Benison O'Reilly on Tuesday, April 27th, 2010

We recently arrived back from a family holiday in Hong Kong, and passed a few important hurdles in the process.  A couple of years ago Joe had a bad flight back from Fiji, which he claimed ‘hurt my ears’. He decided then and there he was through with flying. As you can imagine this limited our holiday options somewhat, just at a time the rest of the family was keen to spread its wings.

We consulted our RDI® consultant, who suggested a combination of noise-cancelling headphones (available at electronic/ music stores, unfortunately with a hefty price tag) and a social story. My husband and I took Joe on a weekend trip to Melbourne (total disaster —a story in itself) but the headphones came through with flying colours (pun unintentional).

An eight and a half hour trip to Hong Kong was another matter altogether, of course.  We elected to do an overnighter, which ultimately worked well for Joe, if not the rest of the family. Joe played a few games on the in-flight entertainment system and then fell asleep for most of both flights—there and back— although the rest of us arrived at our destination bedraggled and grumpy.

How did Joe cope with busy, chaotic Hong Kong?  Pretty well in fact, although he was out of sorts the first 24 hours and developed a nasty rash on his face which he couldn’t stop himself rubbing. (Thus the photos aren’t pretty.) He enjoyed Disneyland, especially Space Mountain. He coped with train, tram, ferry, taxi and cable car rides admirably. He found enough foods he liked, despite his notoriously fussy appetite.  He was disappointed that Super Mario Bros toys (his current obsession) weren’t as ubiquitous as he’d supposed, but that was the main downside.

A visit to The Peak on the second last day was a highlight. The magnificent view was obscured by haze but we found a store that sold a huge range of Super Mario toys! I don’t know who was more thrilled, Joe or I.

Overall, despite some fractious moments involving sleep-deprived teenagers, the trip was fun.

Today Joe said,’ I want to go back to Hong Kong.’

‘Why?’ we asked.

‘Because I like it,’ he said.   Duh—obvious really.

In two weeks’ home my husband and I are off on another trip, although Joe is remaining at home this time. We are heading to Rockhampton, Queensland on Saturday May 15^th to present at an Autism Info Day, being sponsored by Autism Awareness and Aussie Helpers Children’s Fund.  Hopefully our regional cousins, so often neglected by ASD services, will get something out of the day.  If you know anyone from the region who might benefit please send them the link below.  It should be a good day and it’s free of charge.

www.autismawareness.com.au/autisminfoday2010

These days are one of the payoffs that have come to Seana and me from writing the Australian Autism Handbook—a chance to meet other ASD parents, especially those just starting out on their autism journey. A lot of these people are still shell-shocked, in the worst stages of grief, so it’s a good feeling to go out and talk to them, and reassure them that the majority of kids will get better if their parents  are prepared to stand up to help them.

Not cured— just better—I stress. Our little trip to Hong Kong may have had its ups and down but ultimately proves that point.

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‘Australian Story’ and autism mums

by Benison O'Reilly on Tuesday, August 11th, 2009

Welcome to the inaugural blog for the Australian Autism Handbook. The timing is auspicious, thanks to this week’s Australian Story (ABC TV), featuring Ian, Nicole and Jack Rogerson.

www.abc.net.au/austory/

Nicole, a good mate of Seana’s, in particular, for several years, is actually a contributor to the Where Are They Now? chapter in the AAH.

One of the comments Nicole makes in our book is:

I appreciate that everyone carries their own personal expectations and what they consider to be a level of success. I am sure some days people look at Jack with me and think ‘oh that poor woman, she’s got that disabled child’. Whereas, I think I’ve got the best autistic kid in the world.

I thought this an interesting observation, because for any who knows Nicole the last thing she inspires is pity. She’s a human dynamo, a gifted public speaker, and an unflagging advocate for early intervention.  She also hosts a great party and laughs a lot.

Autism is often portrayed negatively by the mainstream press, and for some families affected by severe autism maybe that is the reality, but our family life, like the Rogerson’s, is overall pretty good.  

Recently I was taken aback when some people expressed in both word and deed that they felt sorry for me. Maybe to them I was just the poor mother of Joe, the boy with autism, but I certainly never think of myself that way.  I have many identities:  I am a wife and also the mother of two fine, young, typically-developing boys. I am daughter, a sister, an aunt.  I am pharmacist (although I don’t think I’ve dispensed a medicine since 1992). I am now a writer.  I am a tuckshop mum, and a soccer mum. I am a theatre goer, and a gym goer, and a member of a political party. Yes, autism is a passion and interest of mine but I don’t feel in any way defined by it.

So I hope I speak for many parents of children with an ASD when I say, don’t feel sorry for us, or, for that matter for our children. We don’t want pity, but I think we’d all appreciate some extra understanding and support.

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