Magazine article The Exceptional Parent

Autism Tissue Program: The Gift of Hope. (EP on Autism)

Magazine article The Exceptional Parent

Autism Tissue Program: The Gift of Hope. (EP on Autism)

Article excerpt

"We never knew what was wrong with Eric when he was alive and hope that this research will help lead to an understanding about autism." Eric, age five, had autism and died of heart failure during a seizure. The wish of his father, Jonathan Carrillo, echoes the wish of all the families who have donated brain tissue of a child or adult relative for brain research.

Brain Research of Autism and Related Disorders

The Autism Tissue Program works with families to make rain tissue available to researchers who look for evidence of changes in the brain that explain autistic behaviors and can give clues about useful treatments. The availability of brain specimens in this country is still limited, so the efforts of the Autism Tissue Program focus on educational outreach to families, educators and medical professionals about the importance of brain tissue donation.

Often, the decision is made in the crisis of the sudden death of a young child. By April of 2003, there were 52 donors to the Autism Tissue Program and 26 were under the age of 16; the youngest boy was four. The Program works with advocates in chapters of the Autism Society of America around the country so they are informed about the process of donation and can provide information to others thinking about donation and support for families who go through the process.

Brain Research

We are often asked what researchers expect to find from brain tissue research amid the present confusion about the cause or causes of autism spectrum disorders. The brain is the place to go to understand how the behaviors that we identify with autism--alterations in social interaction and language development, limited interests and unusual repetitive behaviors--come about. The brain is the organ of the body generating these behaviors. Whether caused by a virus, vaccine, environmental toxins, neonatal trauma or innate genetic anomalies, the resulting behaviors we call "autism" occur because the brain is affected.

What We Know

A small number of brains in children and adults with autism have been studied over the last 20 years. In that time, two major groups, headed by Drs. Margaret Bauman and Tom Kemper in Boston and Dr. Tony Bailey in London, looked systematically at the size, shape, location and numbers of cells in various parts of the brain, knowing what the typically-developing brain areas and cells in them should look like. What they found is that many autistic brains are larger in overall size than average and often show "migration" errors so that some cells in the cortex (outer layer) end up in the wrong location. The cortex is where incoming sensory information is processed and where associations, planning and thinking take place. Errors in positioning can lead to miscommunication among brain cells and associated problems in brain functioning. Cortical migration errors in the temporal lobes, which are located on the sides of the brain, are consistent with seizure activity, an important finding since about 30 percent of the donors to our program also had a seizure disorder.

The most consistent brain change found is a decrease in the numbers of Purkinje cells in the cerebellum, which contains over half of the neurons of the brain and appears to play a central regulatory role for the entire brain. An excerpt from a brain-mapping book co-written by an Autism Tissue Program's tissue advisory board member, Dr. John Mazziotta, explains the role of this structure and how damage to the cerebellum might disrupt normal intellectual, emotional and other cognitive abilities. "In the same way that the cerebellum regulates the rate, force, rhythm and accuracy of movements, so may it regulate the speed, capacity, consistency and appropriateness of mental or cognitive processes. The cerebellum is viewed as an oscillation dampener, maintaining function steadily around a homeostatic baseline."

Other brain structures have likewise been investigated in the pioneering brain studies. …

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