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Tens of Thousands Injuries and Death Reports Linked to Medical Devices Cleared by the FDA with Limited Testing

According to an article by the American Medical Association, an investigation found that by allowing approval for high-risk medical devices without sufficient testing through an FDA streamlined pathway, tens of thousands of injuries and deaths occurred. Yet this has not been the case for the Graduated Electronic Decelerator (GED), the skin shock device which saved my brother's life, stopped his life-threatening head banging, and has been safe. As I have stated before, I tried the device myself because I wanted to experience what my brother experienced. Medical decisions need to be based on facts, scientific evidence, not emotional arguments.

Music Therapy, Autism, Social Communication and Brain Connectivity

A recent study showed that just eight to 12 weeks of 45 minute individualized music therapy improves social communication and functional brain connectivity in children with autism ages six to 12 years, (Sharda M, et al. Trans Psychiatry. 2018;doi:10.1038/s41398-018-0287-3). 51 children were randomized to the music intervention group or a non-music control play intervention without music. MRIs were performed before and after the intervention. The music intervention used musical instruments and songs, paying attention to rhythm. Both interventions tried to create shared experiences and relationships as well as foster self-expression and emotional regulation. Afterwards in the music group, brain connectivity improved in two areas. Furthermore in the auditory and visual areas of the brain which are known to be overconnected in autism, showed a decrease in connectivity.
Let's put music back in schools and certainly for individuals with autism.

US Physicians Who Write Clinical Practice Guidelines Often Have Financial Conflicts of Interest

According to two research letters in JAMA Internal Medicine, on October 29, 2018, authors including Dr. Rishad Khan examined 18 clinical practice guidelines authored by 160 doctors. 49.4 percent declared they received payment in the practice guideline or supplemental materials. 31.3% of the doctors declared they were paid from industries marketing one of ten high-revenue medications recommended by a guideline. Over a quarter of physicians received payment of a high-revenue medication but did not disclose payment.

Pharmaceutical companies give these payments for a reason. As long as this practice continues, we will never know if practice guidelines are based on research evidence or represent another form of advertising.

Artificial Sweeteners, Autism, the Microbiome and the Loss of My Brother's Healthy Compulsive Behavior

According to recent research in animals, maternal gut bacteria may influence the development of autism by altering the immune system in pregnant mothers, (Catherine R. Lammert, Elizabeth L. Frost, Ashley C. Boite, Matt J. Paysour, Mariah E. Shaw, Calli E. Bellinger, Thaddeus K. Weigel et. al., "Cutting Edge: Critical Roles for Microbiota-Mediated Regulation of the Immune System in a Prenatal Immune Activation Model of Autism," Journal of Immunology 201, no. 3 (2018): 845-850).

In another recent study, artificial sweeteners have been found to be toxic on gut bacteria (Dorin Harpaz, Loo Pin Yeo, Francesca Cecchini, Trish H. P. Koon, Ariel Kushmaro, Alfred I. Y. Tok, Robert S. Marks et. al., "Measuring Artificial Sweeteners Toxicity Using a Bioluminescent Bacterial Panel," Molecules 23, no. 10 (2018): 2454).

Diet for many reasons in addition to the microbiome is an integral part of health. If there was one compulsive behavior that was good for my brother, it was his need to eat cantaloupe every day with dinner. I remember during a long day of residency training my brother called me at work rather anxious, there was no cantaloupe in the house. He was staying with me for a few weeks while my parents took a vacation. Even though I was exhausted after the ten to eleven hour day, I knew if I did not pick up a cantaloupe on the way home from work, it would have been much worse if I came home without one. However at his new residence, no matter how often my mother and I prompted the staff, there was often no cantaloupe there for my brother. Now that that routine is broken, he refuses to eat any fruit there at all.

My First Protester

Three days ago I gave a lecture along with a board certified behavior analyst and an attorney titled "Applied Behavior Analysis, Public Health Implications and the Law" I discussed the evidence and risks of medication, research on aversives and my brothers' treatments. I discussed Matthew's success with his seven positive behavior contracts, functional communication tokens and supplementary aversive shock, now off medications 29 years and holding a job at school and how his identical twin ended up on twenty medications. When I was done speaking, a protester yelled out twice "Torture!" I replied, "Not one anti-aversive activists would try my brother's 20 medications for one day and see what it feels like."

Regarding medications, our health care and education system for many individuals does not provide other avenues to address behavior. The standard 15-20 minute med check does not provide opportunities to explore other treatment options that may be safer and more effective while effective psychosocial interventions are often unavailable. In the clinic model, individuals with special needs sometimes have long waiting periods to be seen. While in the waiting room, there are noisy crowds and boredom with a lack of activity, a breeding ground for the problem behaviors we are supposed to be treating. At Judge Rotenberg Center, the primary care physician, psychiatrist and dentist are all located in the school building. Individuals can remain with their structure until it is time to be seen.

What we really need to protest is drugs which may have toxic side effects replacing a good school. We need to protest the medical business model which emphasizes quantity over quality and how some individuals have no access to care at all. Finally, we need to stop heartlessly judging others when we have not lived their lives.