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The Good and The Bad of Autism Speaks Top Ten Science Breakthroughs

Posted Feb 16 2010 12:00am



The Good:

1) It is now widely accepted that autism affects 1 in 110 American children and 1 in 70 America boys.

2) Mitochondrial Dysfunction/ Fever and Autistic Regression. It is wonderful to see this critically important and vastly understudied issue being researched. Too many ASD parents already know about this autistic trajectory having seen it up close. The majority of this parent community believes that repeated adverse reactions to multiple vaccinations trigger severe fevers, brain inflammation and loss of skills and speech.

3) Later Language Acquisition. Autistic kids can acquire language after 5.

4) Association /w Family History of Autoimmune Disorders and Autism. I don’t understand why this is being studied in Denmark rather than the US, but the subject is important. Families have known this association to be strong for years now and it is good to see money invested in this issue.

5) Early Intervention Works. The earlier a child is diagnosed w/ ASD the earlier intervention starts the better the outcome.

The Bad:

1) The Mice Model. We need phenotype investments right now in our children. Classic ASD, Regressive ASD, Non-responders, ABA responders, Sick/ GI ASD kids and Recovered kids. Why are we not starting there, detailing the symptomology, the ASD trajectory, interventions and current treatment outcomes for each of these forms of ASD? That is what autism families want studied.

2) Genome Technologies. Where to begin? This is hugely expensive research that fascinates scientists yet is enormously unpopular with families. Genome work has been largely disappointing regarding yielding insights to disease like MS and Parkinson’s.

3) Genetic Copy Number Variations and Pathways-How much does this cost in terms of helping people affected with autism now? Why aren’t these resources being invested into environmental trigger research that will yield faster and less expensive results?

4) Ripserdal, Parent Training and ABA. Parent training is always great but why is risperdal the ONLY intervention mentioned for children living with autism now? Risperdal may indeed help some children but it is a powerful anti-psychotic with dangerous side- effects, especially for boys: the growth of breasts, extreme weight gain, overall dampening of all cognitive and emotional affect…Where is the acknowledgement of these risks?

Risperdal and other powerful off-label anti-psychotics regularly used on autistic children are only treating the symptoms. They do not touch the underlying problems. Yes, sometimes symptom management must be the first priority in extreme cases but this is not a tenable approach to helping our kids.

Where is the acknowledgement that some children act out because they are in pain?

Shouldn’t we studying and advocating for the treatment of underlying medical issues before risperdal? Where is the research on GI pain- an issue that affects at least 40% of children with autism and one which greatly decreases an individual’s ability to function, make progress or even be part of their family? Why isn’t that a bigger priority than developing anti-psychotics?



 

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