Letter To The Editor: Recommendations For Future Autism Conferences

A few weeks ago, I attended a conference on autism. I wish to thank the Virgin Islands University Center for Excellence in Development Disabilities (VIUCEDD) and its conveners for an informative conference now in its tenth year.

The VIUCEDD declares its mission “is to enhance the quality of life for individuals with disabilities and their families and to provide them with tools necessary for independence, productivity and full inclusion”. Based on my participation in the conference, I wanted to take this opportunity to share observations and recommendations for any future autism conference agenda.

I encourage VIUCEDD to continue to live up to its mission and garner its best to reflect its mission in all it practices. I also want to applaud VIUCEDD for its decision to include the participation of local professional presence in the conference to include Dr. Lindsy Wagner affiliated with Island Therapy solutions. Oftentimes, we overlook our on-island competent and trained professional presence, seeking instead to exclusively solicit services outside our borders that exist right in our midst. Off-island presenter, Dr. Brian Boyd from the University of North Carolina, Chapel Hill provided a valuable presentation that I personally benefited from as I service children labeled, developmentally delayed. The conference’s contents were primarily focused on applications of applied behavioral analysis(ABA) and social communication and play. As important as these are to the topic of autism; I believe the omission of vital dialogue as a way toward solution of an ailing community and public health problem helps to defeat the purpose of the conference’s intent and disregard for VIUCEDD’s mission.

I feel that the topic of the conference was critical to the discussion of wellness and quality of life in our community, particularly as it relates to learners diagnosed with ASD (autism spectrum disorder). Amidst the soaring numbers of children labeled autistic as well as the controversy in public health and academic circles on autism as linked to vaccinations, it seems that discussion may have offered a balance to the autism dialogue during the course of the conference. Instead, during opening remarks a ‘disclaimer’ statement insinuating autism as unrelated to vaccinations strategically preceded the entire discussion. Again, to omit that discussion, I feel, is akin to leaving off the dessert from a full-course meal, especially a five-star rated dessert!

It is not sufficient to administer treatment of any disease and not have knowledge of all causes or the potential for which to treat that disease.  When a parent has birthed a perfect baby, and one day it is found dead in its crib or along the way has lost the ‘gleam and soul from its eye’, appalling interest emerges. It is estimated that one in sixty-eight children are diagnosed with autism and is a hair-raisingly significant admission. Climbing autism statistics that amounts to losing children to death or mental incapacity, as well as limited functioning, or vegetable status have stirred enough outrage and concern relative to vaccinations as a probable cause of autism.

It is so significant the admission that the National Vaccine Information Center was formed. In 1998 British Doctor Andrew Wakefield, labeled a ‘crusader guru’ for the MMR(measles, mumps rubella)vaccine became one of the first public dissenter of vaccines, in contemporary times,  whose research proposed a link between autism and vaccination. Wakefield’s research was published in the prestigious peer-reviewed British Journal Lancet. After twelve years of publication, it was retracted, citing Wakefield’s ‘callous disregard’, ‘professional misconduct’ and a host of reasons his body of research appears to have been discredited. Wakefield’s anti-vaccination campaign stirred much controversy, then and now. Resultantly, Wakefield lost his license, but inspired an analysis of over 1000 articles by the Institute of Medicine for which it is claimed no evidence of Dr. Wakefield’s hypothesis was found. Yet it has been over twenty-years that the controversy has existed. Governments, the CDC,  (Center for Disease Control)courts,  vaccine manufacturers  ‘quietly conceded’ that the MMR vaccine causes autism and related stomach disorders.

The snowball effect of Wakefield’s controversial research has wielded questionable consequences. It has triggered the announcements of measles outbreaks, admission by (CDC) scientist that vaccinations are linked to autism, that vaccination exemptions increase, and millions of dollars on hundreds of research on autism has been conducted to validate or disqualify Wakefield’s research.

A federal Vaccine Injury Compensation Program was created and millions of dollars have been awarded by the ‘vaccine court’ in which it was admitted that the Vaccine MMR caused encephalopathy (brain disorder).   Jenny McCarthy, former co-host of television show, the View, and her autism organization (Generation Rescue) cites that the vaccine court was established by the federal government to protect pharmaceutical companies from direct lawsuits arising due to preponderance of illnesses and injuries stemming from the companies’ vaccination products.

Doesn’t the unfolding research surrounding autism merit the discussion that link autism to vaccination?    When higher education forums open to public sphere recognizes its duty to act with a sense of moral turpitude to encourage unbiased meaningful dialogue that benefits the community on a vital topic of controversy and need, everyone potentially benefits. None of us possess the right to make a self-righteous I-am-God –attitude- valued judgment that directly affects the quality life of another, based on a personal opinion, perception or bias.  It is not ethically acceptable or humanly justified.   In any debate, there are pros and cons. Parents, especially, who are the victims in this ghoulish autism nightmare can benefit from the disclosure of all the facts.   They can flesh out all sides of the autism issue so they can make informed decisions in their best interest.

Social science research methods, though it admits to problems, require the omission of personal prejudices, predilections, and personal preferences from the analysis of data in order to eliminate contamination.  I believe if there is not a concerted effort to expand the dialogue on autism, we are simply applying a band-aid approach to the dilemma with no intent to cure, remedy or eliminate the exacerbating problem.

Submitted on Thursday by: Barbara Knight