By Katie Wright
I frequently read about the importance of brain and tissue donation by autistic people for autism research. Apparently there is a severe shortage of this tissue available for study. To me my child’s brain is the essence of Christian. So much unnecessary damage has already been done to Christian’s brain. His brain was shown so little care and respect by the medical research community. Doctors took risks with my child they have no right to take. I feel I did not, was unable to, protect Christian’s brain when it really mattered and he suffers from traumatic brain damage as a result. Naturally, now I am extremely protective of Christian; it is the least I can do.
No one knows better than parents like me that autism research is moving too slowly, making too few ground breaking or life improving discoveries. If Christian’s deceased body could meaningfully contribute to innovative causation research, it would be very, very hard, but I would say yes and donate his body. If his brain were used to accelerate true progress I think it would be a great tribute to his spirit. I am sure most ASD parents feel the same way.
However the recent Courchesne Study made me change my mind about donating Christian’s brain to science. This study represents my nightmare, the worst-case scenario. Children’s brains have been used for politically driven poor quality science. I would rather Christian be buried with his brain intact than used for such abysmal research.
JAMA should be ashamed of themselves for publishing this Courchesne study. Courchesne examined the brains of 7 children with autism and 6 controls. Yes, this study is entirely based upon 13 people. Courchesne found that the autistic brains had more neurons in the pre-frontal cortex than the control brains. He describes these findings as, “an incredibly important discovery that tells us something started going wrong in prenatal life in children with autism.” This is both an unbelievable and unbelievably self-serving statement filled with hyperbole and grandiosity.
What Couchesne’s study actually tells us is that 6 ASD children had more prefrontal cortex neurons than 7 typical children. There were no aged matched controls! 2 of the 7 “ASD” children did not even have an official ASD diagnosis! 5 of the 7 ASD kids were on anti-psychotic drugs. We have idea how these drugs affect developing brain tissue. 1 of the control children had been taking Concerta and klonopin. Another control had had an organ transplant and was on immunosuppressive drugs for lengthy periods of time. There are only 5 controls not, as far as we know, on various prescription drugs. The fact that this study was actually published only proves how low the bar is for ASD genetic and brain research. There are not enough hours this day to list all the incredible, innovative environmental research studies regularly rejected by autism research journals. A 7-person biomedical study would NEVER be published by JAMA, I promise you.
There is a powerful and pervasive need of so many in the autism research community to “prove” autism is genetically and prenatally determined. The majority of autism researchers have spent their professional lives betting on the belief that autism is mainly a heritable genetic disorder of the brain. They have staked their careers on this hypothesis. They have spent hundreds of millions of dollars looking for the “autism genes.” This area of autism research has eaten up 80 cents of every dollar available for research. For decades we have been hearing promises that this genetic/ brain research would soon yield breakthroughs and exciting new treatments would result. The only problem here is they have not delivered, not to our children, not to our families nor to the taxpayers.
In the meantime families have grown more vocally impatient. Their kids need help and they need help now. Forget about vaccine safety research, that is a non-starter. Let’s just look at some research basics that need to get done. Virtually no money has been spent researching here and now biomedical interventions. Over 50% of ASD kids have bowel problems- there are no approved treatments. 25% of ASD kids have a mitochondrial dysfunction- there are no approved treatments. Over 25% of ASD kids have serious food intolerances- there are no approved dietary interventions. At least 25% of ASD kids suffer from chronic illness and immune dysfunction- there are no approved treatments. Over 50% of ASD regress into autism and there are no approved treatments to stop or reverse this process.
Families are frequenting told there isn’t enough research money available to address these issues. But guess what there is plenty of money for? Brain and gene research! These “Autism Centers for Excellence” centers blow almost $17 million a year on redundant brain and gene research. It is estimated that 50% of the ACE budgets go to overheard. There is no consumer oversight or public accountability for the money they spend. The NIH doles of autism research money behind closed dollars and without consumer input (they are under no obligation to follow the IACC recommendations), and guess what they love to fund the most? Brain and gene research.
This ridiculous Courchesne study was conducted by an ACE center naturally. I am sad to say it was funded in part by Autism Speaks.
The NIH and Autism Speaks have undertaken a campaign to promote brain and tissue donations. The evidence of this publicized and well-funded campaign is everywhere. As I stated earlier, as much as it would pain me I had planned to make my son’s brain and body available for research. This Courchesne study has changed my mind.
This mother does not want to hear one more word about brain donations until we see the reform of ACE. I want Autism Speaks to stop putting so much time and energy into acquiring brains and instead train that focus on biomedical treatment research that will help children living today. AS has made some nice progress, especially with the recent Trailblazer grant which is terrific. However, AS’ treatment science has been almost entirely behaviorally based. Small forays into biomedical research have focused on oxytocin, please; small time stuff. We need meaningful gut, immune, PANDAS, Lyme, adverse vaccine reaction and mitochondrial interventions. I would rather see no more brain research period than another Courchesne like study. This study is unworthy of our children’s brains, a precious resource deserving of more respect and only the very best science.
Katie Wright is Contributing Editor for Age of Autism.
Managing Editor's Addition. This study, like so many others funded by AS and other mainstream, "anything but vaccination" entities is so depressing that we need to find something to laugh at. Young Frankenstein (that's frahn-ken-steen) serves the purpose, yes?"