I have seen Dr. Martha Herbert present several times and she is always impressive. Once again she gave an engaging, insightful and -- as always -- scientifically well-supported presentation. She challenged the old classic model of defining autism and researching causes and treatments. She asked what I think is a critical question: Is autism a "brain disorder" or is it a "disorder that affects the brain"? Based on what we learned from Dr. Herbert and others during the weekend, I vote for the latter! As Dr. Herbert argued, we need to move toward a whole body, interactive systems approach to autism.
She reminded us that "science" is not only about discovery, problem solving, and sleuthing, but also about rhetoric -- we need to challenge the old ways of thinking and change the model for autism. We need to reallocate resources for more direct and immediate help for those with autism. Dr. Herbert eloquently explained that she does not view autism as a tragedy because "tragedy" implies that nothing can be done. Rather, she views it as a catastrophe because we can step up in the wake of a catastrophe and take action.
Dr. Herbert demonstrated that it is not possible to explain away most of the increase in autism over recent years -- change in diagnostic criteria, age at time of diagnosis and inclusion of less severe cases can explain only a relatively small portion of the increase.
She also argued that we need to move away from thinking of autism as static encephalopathy -- whether "genetic" or "genetic/environmental" -- and recognize that the mechanism(s) of autism may be active. She discussed that the evidence now suggests "genetic influence" not "genetic determination" in autism causation and we need to recognize that the environment -- which impacts autism as well -- is not constant. Evidence of post-natal brain changes suggests that autism is not caused solely by prenatal injury/changes; however it is possible that prenatal injury may create a predisposition toward autism. Too many, according to Dr. Herbert, make the leap that something like prenatal insult, which might be a contributing element or a risk factor for autism, is the cause of autism. In fact, there is significant evidence of chronic/ongoing problems in autism, such as oxidative stress and inflammation, and these problems are not limited to the brain, which raises additional questions about the validity of the "all prenatal/predetermined" model.
She noted that there are some who believe that the brains of those with autism are "irretrievably broken." While there are changes in the brain associated with autism, we don't know if they are the cause of autism or caused by whatever it is that causes autism. Dr. Herbert discussed some of the science suggesting that there are improvements sometimes seen in autism suggesting that the "unfixable brain" theory is not valid. She also discussed the large scale structural problems sometimes seen in the brains of those with autism may not be the key playerbut rather that problems with cell metabolism can impact brain function and these may play a significant role. This theory makes sense because it helps explain that the cellular functioning changes seen throughout the body -- not just in the brain and changes in cell metabolism can be related to environmental insults. Moreover, many problems related to cell metabolism are treatable. She also talked about an increased ratio of excitation to inhibition in the neural pathways that could exhibit as many common features of autism such as seizures, sensory issues, sleep trouble. She discussed that treatments can potentially help many with autism (and other diseases such as Alzheimer's) by applying the new model of autism she discussed.
Dr. Herbert ended her talk of this new model of autism expressing the need to further research all the areas she discussed. She discussed research she and her colleagues would be doing in this regard and also urged that there be more formal documentation of recovery as a result of biomedical treatments so that the establishment could no longer ignore what so many parents and biomedical professionals are seeing -- children are getting better! While anecdotal evidence is nice, more formalized data collection is what is needed (not just clinical trials but also single subject studies where a child's treatment is well-documented and the child's progress is measured and compared at various points) to overcome the bias against biomedical treatments.
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