Brain Tissue and Quality of Life

This morning, there was a spot on National Public Radio autism which started out with the premise that “Research on autism is being hobbled by a shortage of brain tissue.” Okay, I’m awake and they’ve gotten my undivided attention. Autism? Shortage of BRAIN tissue? Huh?

As a “brain junkie,” I have spent hours poring over the neurophysiological literature on human development both typical and atypical. Research on the human brain comes from a number of sources, among them brain scan technology measuring brain structure and function, animal models, and autopsied tissue. The neurophysiological research on atypical development resulting in a diagnosis of autism has led to a number of fascinating findings that appear to refute the view of autism to which my own disciplines – psychology and education – subscribe. Specifically, it no longer can be argued convincingly that autism and intellectual disability are “co-occurring” — even if the CDC’s website today states “The majority [62%] of children the ADDM Network identified as having ASDs did not have intellectual disability [intelligence quotient <=70]).” Implication: Some 1/3 of those with autism have both. Compare this, though, to older statistics still prominently displayed on some autism websites, such as that of the Autistic Society, that “Seventy-five to 80 percent of people with autism are mentally retarded to some extent. Fifteen to 20 percent are considered severely retarded, with IQs below 35.”

But I digress.

The part of the report that struck me most was the triumvirate of people interviewed. One, professor of pediatrics, Ron Zielke, who is also the director of the Brain and Tissue Bank for Developmental Disorders at the University of Maryland, is justifiably concerned that only some 50 autistic brains have been collected in the face of numerous requests by researchers for tissue samples. Okay, that’s obviously where the article’s topic came from. The second interviewee was University of California, San Diego, autism researcher, Eric Courchesne who is responsible for identifying a phenomenon called “postnatal transient macroencephaly” as a possible causative factor in autism. ALL human beings go through a critical period after birth (postnatal) that is short-lived (transient) and involves rapid proliferation or growth of brain cells (hence, macroencephaly). It’s why early intervention is so important and why the extraordinary leaps and bounds that neurotypical toddlers make in their learning occur. However, in MOST human beings, what you don’t use, you lose. The brain “prunes” itself to become more efficient and create a solid scaffold on which later learning occurs is built. Courchesne discovered that, in autism, the pruning does not always occur so, instead of going through downtown Los Angeles at 3 a.m. on a Sunday morning, owners of the autistic brain are constantly challenged with the Los Angeles freeway system at rush hour. Not that you can’t get through downtown LA – it just is harder to get there with all the traffic on all those extra roads. Okay, so now we have a reason why the shortage of autistic brain tissue might actually be a problem.

But the third member of the triumvirate, Jonathan Mitchell, is a 50-something who has autism himself. He is concerned about the shortage of autistic brain tissue because, as a future tissue donor, “He hopes, … that researchers will find something in his brain that leads to a treatment or cure for autism so that someday children ‘wouldn’t have to go through the hell that I went through and still continue to go through in my life.’”

The federal Interagency Autism Coordinating Committee has, for several years now, strongly recommended that autism research and activity at the national level should be tipped substantially toward addressing quality of life issues rather than on a search for a cause or a cure.

What awakened me this morning was how sad it is that the IACC did not exist, and its recommendations were never heard, in time to affect the quality of life for Jonathan Mitchell. Yes, it’s fascinating to know about and understand the differences between autistic and neurotypical brains but no one should ever be filled with such self-loathing and misery as an autistic who can neither appreciate his own gifts as a human being nor find some joy in his life. Check it out yourself and see if you agree:

Shortage of Brain Tissue Hinders Autism Research by Jon Hamilton