By Katie Wright
People frequently ask me what I think of Autism Speaks and are surprised by my answer. I believe the creative team, the administrative staff, the incredibly hard working special event and Walk staffers are amazing. They all could be pursuing more lucrative careers elsewhere but truly want to help autistic kids and their families.
My parents, Bob and Suzanne Wright, are also tireless in their efforts to bring attention to the needs of our families. At a time when it seems as if the whole world, especially in the Middle East, is angry with the United States, my Mom has successfully engaged in a wonderful collaboration with the Sheika of Qatar in order to have the United Nations declare a World Autism Day. This is only the third time the U.N. has recognized a disease in such a way. Autism Speaks has, undoubtedly, lifted the shame and isolation so many families felt by forcing autism into many public forums in the media and government. Their work on insurance re-imbursement is also extremely important to all our cash strapped families.
It is Autism Speaks’ scientific advisors that I find myself at great pains to understand.
It appears as if they are wedded to the past and are non-responsive to what parents want and the immediate needs of our children. By any measure, autism is worse than ever and traditional research has yielded few breakthroughs for children living today. So many ASD children are living with horrible GI disease, seizures, serious immune deficiencies, pain induced self-abusive behavior…
Meanwhile AS has funded eye gazing research on fruit flies, a study on the olfactory senses in worms, endless gene research, yet nothing relevant to the pain my child lives with on a daily basis. Parents have waited for three years in hopes of seeing real biomedical research. Of course there is a place for gene and brain research in autism, but not at the expense of toxicology, immunology, regression, gastrointestinal and vaccine safety research. Preservatives in children’s vaccines such as: aluminum, ammonia, formaldehyde, mercury and human embryos have never been adequately researched or proven to be safe, nor has the CDC’s extremely aggressive vaccination schedule. Everyday infants are injected with these preservatives, combination vaccines and live viruses. There is no more time to waste. We are in the midst of a catastrophe and must be unafraid in pursuit of answers.
It appears as if AS grants are selected less as a result of the significance of a research proposal but more as a consequence of the financial resources of academic institutions to put forth in producing most professional and conservative grant applications. Instead of funding impactful, breakthrough science, millions of dollars are spent on researching the same safe subjects over and over again. Numerous exciting, innovative and progressive biomedical grants on GI disease, methylation pathways and toxicity, vaccinated and unvaccinated siblings have been repeatedly rejected due to ignorance and fear. It is past time for the scientific advisory boards to think outside the box and pursue the bold research parents want and our children desperately need.
Donald Trump’s recent comments are wonderfully illustrative of how out of touch with reality the AS’ SAC is. Mr. Trump is the parent of a young boy and is horrified by the recent explosion of autism. Mr. Trump stated that he believes the “massive” increase in vaccines for infants could account for autism’s rising numbers. Mrs. Melania Trump has spoken openly about how she spaces out Barron’s vaccinations. So while some SAC scientists still debate whether or not autism is actually increasing, why it one in 90 American boys in the spectrum does not equal an epidemic and pursue their lonely quest to find the “autism genes,” parents have moved on.
Regarding the most recent grants for young investigators, I question the wisdom in investing such great financial resources in researchers new to the field while the grants of experienced DAN! physicians who work to recover kids every day are continually ignored. AS needs to invest in doctors who have been treating and recovering so many autistic children, not just in academics with the best team of professional grant writers. Hopefully, Autism Speaks’ summertime clinical grants will reflect a broader, more biomedical and relevant approach to helping our children. In the meantime, I encourage parents to educate themselves about biomedical interventions via other websites, such as: NAA, SafeMinds, ARI, TACA, Generation Rescue, FAIR Media and Thoughtful House.
I know that Autism Speaks is trying to change. There are some truly courageous voices on the SAC, but they are too few. I am, however, optimistic that Dr. David Baskin’s new environmental committee will green light some exciting research. I am also hopeful that Dr. Geraldine Dawson, AS’ new Chief Scientific Officer, will be more proactive than her predecessor and champion the innovative environmental research families want to see funded.
On another subject I want to thank Deirdre Imus for her wonderful essay in the Huffington Post about the New Jersey vaccine mandate. I feel heartbroken for the New Jersey parents who must choose between day care, school and more vaccines for their toddlers and school age children. Why mercury has not been removed from every flu vaccine simply defies comprehension. One would think that New Jersey, possibly the autism capital in the country, would approach vaccine mandates with great caution. One in 60 New Jersey boys is on the autistic spectrum and the vast majority of parents believe that vaccines played a role in triggering the disorder in their children.
It is astounding that the American Academy of Pediatrics yet again, ignores parents’ concerns and testifies, again, in favor of the adding even more vaccines to the overcrowded schedule. Exemptions will be almost impossible to procure. Parents with one ASD child are now placed in the horrible position of having to over-vaccinate younger siblings, despite their well-founded concerns about the impact of so many live viruses, dangerous preservatives and combination vaccines on a developing brain.
It is time for the researchers, politicians and the AAP to stop listening only to each other and start listening to the families of autistic kids.
Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.
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