Thursday, April 03, 2008

Autism & Missed Household Income

Via Tom McMahon and his tip of the hat to Future Pundit, I found this press release from the University of Rochester Medical Center, titled Households with kids with autism likely to earn less, which discusses how out–of-pocket expenses combined with missed income opportunity burden families with autism spectrum disorder (ASD):
When the demographic and educational characteristics of families with children with ASD were analyzed, their average actual reported annual income fell short of the average predicted income by more than $6,200.

“That’s a staggering 14 percent loss,” Montes said. “We presume this may be strongly related to a lack of appropriate community-based support resources and services. This shortage can ultimately overwhelm parents, sometimes forcing them to sacrifice work and income opportunities for the sake of balancing their unique family obligations.”

This echoes findings from another nationally representative study Montes led in 2006: Fathers of autistic children were 9 percent less likely to report full-time employment compared to fathers of the non-autistic population.

“The ripple effect, of course, is that this may be impoverishing some ASD-affected families in the long term. Less savings and less investment make it more difficult to retire comfortably or send children to college,” Montes said.
Personal experience tells me the $6,200 figure is on the low side; but then perhaps it has something to do with the ages of the children involved (kindergarten-age through eighth grade), the age at which the children have been diagnosed, and the which end of the ASD contium they are on.

Allie is now 18, and her official diagnosis of Aspergers didn't occur until just under 4 years ago. Prior to that, for about 4 years, PDD was a diagnosis, along with ADD, learning disabilities and a few other 'incidentals'. Before that? A mish-mosh of possibilities -- and that after years of mud-slinging at me, of one variety or another; something I'll have to get to here eventually. At her age too, we have to consider the 'newness' of the awareness and understanding in autism.

Contrary to what some may believe, higher-functioning children can have the least support, both in terms of financial assistance (when funds are low, the monies are saved for 'the worst') and institutional understanding. Not to mention the affects of special needs kids on marriages, families (household and extended), and the diminished social lives of parents, who suffer fools and even larger blights.

All of this affects the ability to work and be there for the child.

I remember, with a shudder, the number of day care centers who asked me to withdraw my child from their center, the number of babysitters to call me at work to tell me they were quitting -- and on their way to drop my daughter off at work with me.

I remember the job interviews, where my working through lunch to leave early was just fine; but by week three they were no longer tolerant. (Plus several other hideous employers which are much longer stories in and of themselves.)

I also remember my shrinking world of support. Friends and family don't have any idea what you are going through; they tire of the out-bursts from the child and the exhaustion of the parent. It's not that they shun, but that they can't grasp the situation. They find it unpleasant and you find them avoiding you, however unconscious the acts. You forgive them their ignorance, but still, your world shrinks and with that, you lose more bits of yourself...

These are but a few such examples of how your career and work are affected by parenting a child on the autism spectrum; seems like a heck of a lot more than six grand, or 14%.

But at least someone is trying to look into the issue.
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