July 23rd, 2010

woods, Elizabeth, camera, April

Talking about Autism

Renee M. Wendel, down at Texas State University in San Marcos, invited some parents to come address one of her classes about what it's like to be the parent of an autistic child.   Predictably (I think) one of the parents couldn't make it, so there were three of us.  All sufficiently educated and well-off to provide our children with more advantages than is available to many--and all had experienced social and familial lack of understanding, disapproval and sometimes outright hostility from families and society.

I could see the students absorbing a lot of this and relating it to such experiences from other causes, but what you can't get across, unless the person has this experience, is how much autism swallows your life.   One of the things I mentioned in the class was that when R- and I first took our son to the 'autism week' at a disability camp, we had looked forward to finally having time with each other (at least, when he came home from work.)  But it had been years since we'd had any alone-time at all and we found, on the trip back home from the camp, that we couldn't really talk to each other in more than the brief phrases that had been the only thing possible (between interruptions, emergencies, etc.) for that time.   And we had not realized how tired we were, until then, with the tension off for a few days. 

In order to provide what their autistic child or children need, parents devote much more resources to them--they have to.   In two-parent families this nearly always means that one parent loses ground (or loses entirely) in their career, because--unlike with a physically disabled child--those from whom the parents would normally expect support don't give it.   Non-disabled siblings lose out, too.   You know that if you have an infant-to-three year old, the older child will get less attention for awhile...but with a kid on the spectrum, "awhile" lasts decades.

The other parents I met were all the kind who had the energy, time, and money to give...but not everyone does.  A single parent won't be able to hold down a job, because caregivers for autistic children--people you can trust with kids like this--don't exist for the hours a day you'd need them, at a price any but the rich can afford.  I have friends whose grandson has CHARGE syndrome, a multi-organ disability affecting heart, gut, hearing, breathing, and some others I forget.  A purely medical condition that does not produce the off-putting behaviors of kids on the spectrum.  It's taking two parents working full-time and a grandparent sitting up nights with the child to be sure his trach doesn't clog up (he has to be suctioned several times a night) to support this kid, who has already had (and will have more) multiple surgeries for the things that surgery can correct.  They can't get enough night nurses with pediatric ICU experience to relieve the grandfather...but they have three nights covered.   If they didn't both have good jobs with medical benefits?   That kid might already be dead.   A child on the spectrum is every bit as demanding in terms of the time and energy it takes to care for him...but what would be needed to free a parent to take a full-time job does not exist.

So I meet those who don't have the money or the education and certainly don't get any public support on the parent-support groups online.  Many of them, like me when M- was little, can't take the time to go to meetings, if there even are meetings of parent support groups where they live.   They're isolated in their homes, struggling to cope.  And they're luckier than the ones who can't afford a computer or an internet connection, the ones I hear about only through the others.   Because for all that's said about the smart nerds who have kids on the spectrum and are employed in the computer industry at companies with benefits...autism exists elsewhere too.  Often misdiagnosed as "severe retardation"  or "emotional dysfunction" or even, still, "childhood schizophrenia," autism is found from the slums to the gated communities.