Wednesday, January 21, 2009

Signs of Things to Come

Barack Obama wants to spend some of his political capital fighting autism. What could possibly be wrong with that? From the linked article:

Autism tops Barack Obama's medical to-do list, according to the new president's website. Whitehouse.gov launched at 12:01 pm yesterday, even before the new president had taken his oath of office on the Capitol's West Front. Autism is the only disorder or disease mentioned explicitly in Obama's 24-point agenda. Heart disease and cancer don't get the call. Neither does diabetes, or other chronic diseases. But there are four hefty bullet points addressing autism. Obama called for:

1. Increased funding for research, treatment, screenings, public awareness and support services for autism spectrum disorders.

2. "Life-long services" for people with autism spectrum disorders, as children and as adults. Many parents struggle to find and pay for screening and treatments for their children, but there is even less coverage and capacity for adults with autism-based impairments

3. More funding for the 2006 Combating Autism Act, as well as improving state and federal autism programs.

4. Universal screening for all infants for autism disorders, as well as re-screening for all 2-year-olds. This is the biggie; children are currently screened only if parents or pediatricians voice a concern, so too many children aren't diagnosed until they enter elementary school. The earlier treatment starts, the more effective it is, and a national screening program would help reduce the number of kids falling through the cracks. It would also be a huge undertaking, at a time when both government and privately insured health care is foundering.

I don't have any problems with points one through three, especially number two. I'd much rather have my federal tax dollars go to helping families care for their autistic children than to Planned Parenthood, for instance (though Obama plans to fund both, of course). But number four is giving me the shivers.

Why?

For one thing, as the article goes on to point out, autism can't be definitively diagnosed by, say, a blood test or some other clear-cut method. A child who displays some behavioral markers for autism might or might not end up on the autism spectrum, but mandates from the federal government for universal screening aren't necessarily going to emphasize that reality. The pressure will be on doctors to make early screening a "success," by identifying more and more children as being autistic or being on the autism spectrum.

And in a typical well-child visit, the doctor may only spend twenty minutes or so with a child. How is the doctor supposed to identify correctly that the child is showing some significant lack of development in language, social skills, or motor skills in that kind of time? How is a doctor supposed to make that decision at all when the first screening is supposed to be done when the child is nine months old?

Granted, many parents can and do notice such developmental delays, when they are severe enough; a nine-month-old who makes little or no effort at all to grasp objects, to smile back at someone, or to mimic language or form sounds is probably already being brought to the doctor by anxious parents wanting to know what is wrong. But for the more subtle cases, how is the doctor supposed to differentiate between a simple case of late blooming (especially in infants born prematurely) and some level of autism in a twenty-minute checkup?

The answer is simple: he isn't. What he is going to do is mark the child's chart to indicate some suspicion of autism, triggering automatic follow-up visits, visits with specialists, and possibly a whole barrage of social services all designed to clarify whether the child is indeed autistic, or on the spectrum, or neither.

Perhaps a small number of children whose diagnoses might have been delayed will be helped earlier by this, though it's too early to tell. But it's quite likely that many parents will be put through great anxiety and stress during the processes triggered by the mandatory screenings, only to be told after months of doctor visits and tests that their child doesn't appear to be autistic, and has caught up with his peers developmentally speaking.

What really bothers me about all of this is the attitude of fundamental distrust for parents that such mandatory screening programs represent. While it is true that autism can be a very frustrating and difficult to diagnose condition, it doesn't make it easier to diagnose when we assume that a doctor can spot in a busy twenty minute appointment what a loving parent has not yet noticed. And while I realize that some children are being raised in less than ideal circumstances, it is still the case that most children in America are being raised by their own, married, parents; targeting federal help in the form of mandatory screenings toward those children in other circumstances might be a better approach, in the long run.

But in Obama's America, any such targeting would be taken as an expression that we believe children are better off when they're being raised by two people of opposite genders who are married to each other--and we can't have that, can we? So we have to assume that a child in a crowded foster home and a child whose mother stays at home with him are equally at risk of having their autism remain undiagnosed until elementary school, however unlikely that may be.

5 comments:

matthew archbold said...

Thanks! I didn't think I could be more worried about an Obama Presidency but now you've given me more to worry about. Thanks. Thanks a lot.

freddy said...

Wanna bet part of the screening will include strong advice to the parents not to have more children, complete with referrals to family planning agencies?

Mrs. Murphy said...

MANDATORY testing? Fabulous... next they will compile statistics to show the most likely situations and genetics an autistic child can come from and put those expectant moms into a "maybe you should have an abortion" class.

Deirdre Mundy said...

Hmm... I wonder how this will effect homeschoolers? Mandatory "special classes?" Even for high-functioning Aspie kids? (The sort who would have been "nerdy' or 'a little quirky' 15 years ago?)

Jen said...

This is scary... unless things have changed drastically since I was in grad school, Autism can't be diagnosed until age 2. Many children with Autism, have normal development until about 2 when things suddenly stop, and there is regression, especially in language, social development. Anything before that would just require a "watch and wait strategy". With required screenings for infants, would doctors and parents then be pressured to assign a diagnosis and treatment?

What use is it to waste time and money and cause families undo worry?