Monday, August 27, 2007

Time to Deconstruct Autism?

I think a big problem with the current social construct of autism is that it lumps too many things together. It's flawed even without the spectrum, which is one of the most popular criticisms of the current construct of autism. (Some angry "curebie" parents of LFAs often argue that full-blown LFA is the only thing that should properly be called "autism.") No two people in the same diagnostic or broader phenotype category are likely to have the exact same challenges and quirks. They do not all have the same needs. Sometimes they don't even have similar needs.

I think that children who display what are now considered "autistic behaviors" ought to be assessed individually for their sensory, cognitive, and behavioral issues, via tests, observations, and interviews with the parents to report behavior not seen in the lab (e.g. poo-smearing and head-banging). Treatment should then be done in a way that is sensible and realistic and does not violate human rights.

I wonder how many LFAs would improve their most infamous problem behaviors with sensory comforts tailored to their over- and under-sensitivities? How often has this been tried? It would probably be more humane and effective than institutionalization or potentially dangerous quack cures. It might be a bit expensive...but it might be the best hope these children have, besides the "luck of the draw" of growing up. Perhaps institutions could give way to centers for dispensing sensory tests and tools for those with what we now call autism.

If they still don't do well, it might be a good idea to further test these kids for allergies and such.

Problem is, though, we may need to hang on to the "autism spectrum" concept at least to some degree to do this. But perhaps the name could be changed to something accurate and non-degrading that does not mention the dreaded A-word. "Sensory-Cognitive Developmental Challenges" or something like that.


Chuck said...

Why not just drop ASD from the DSM /ICD altogether? Why can't ASD go the way of homosexuality? Also there is no distinction between LFA and HFA in either DSM or ICD. Those are just "feel good" terms that non-professionals like to use. There is no globally accepted definition of what “functioning” should refer to as it does not refer to IQ.

reform_normal said...

I think there is at least one thing useful in the concept of autism, from all I've read, and for all that's not useful about it: the identification of people with certain types of sensory and cognitive quirks that often result in similar behavioral manifestations.

Beyond that, yeah, the concept of the autism spectrum doesn't seem to have much merit.

I think resources, or at least information, should be available for people who have these sensory-cognitive quirks and will need to learn to work around them. It should all be very individualized.

And yes, functioning is kind of an iffy concept, but even that has at least one potentially salvageable element: the notion that some people with these sensory-cognitive quirks have serious disabilities in the self-care and communication departments and some do not. Of course, whether an individual does or does not have serious challenges in these areas can change over time, so someone called "LFA" isn't necessarily doomed to a life of poo-smearing and wordless screaming, and someone called "HFA" isn't necessarily practically normal and without a tendency to lose self-care or communication skills in the short or even long term.

One of the biggest problems with the concept of HFA/LFA is that people assume that near-normal verbal communication implies near-normal self-care skills, and vice versa. Not so, according to various self-identified auties.

Lili Marlene said...

The only problem with the term "autism" is that it these days, in Australia, it appears to be often used as a euphemism for "intellectually disabled". I have never heard of any of the kids who are in the local special education programme at our childrens's school described as "intellectually disabled" or "learning disabled" or less polite terms for this, but one often hears such children described as "autistic". The term "autism" carries with it the implication that a "cure" or "treatment" for the child's condition is possible, or may be possible one day. One rarely thinks of "intellectual disability" as a curable condition, so it isn't hard to see why that label isn't so fashionable. Apparently years ago some people thought that Downs syndrome may be curable, but now most people realize how absurd such an idea is.

In one recent article in an Australian magazine about parenting it was observed that the term "Developmentally Delayed" appears to have been used by Australian clinicians as a convenient label to use when the doctor doesn't have the guts to tell the parents that their child is disabled. The diagnostic term "Developmentally Delayed" implies that the child will be normal one day, just a bit later than expected. Of course, this is generally not true, but it's a less upsetting thing to tell parents.

It would be nice if people could just grow up and call a spade a spade and stop misusing autism-related terminology.