Tuesday, February 16, 2010

Autism, Science and Recovery: No Simple Answers

by Cindy N Ariel, Ph.D.
and Robert A. Naseef, Ph.D.

Frequently we are asked, “What side are you on?” referring to the debate about vaccines and autism and the recent retraction of Wakefield’s article by the medical journal Lancet in Great Britain? Certainly parents have become passionate on this issue. The discussion is complex and there are no simple answers, but there is unmistakable progress in theory and research.

In recent years, responding to political pressure from the autism community, funding has dramatically increased, and scientific research has picked up its pace. Autism Speaks recently reported the Top 10 Research Studies in 2009 from epidemiology, early intervention, genetics, biology, language acquisition, etc. You can read summaries of this research and get the original sources at: http://www.autismspeaks.org/science/science_news/top_ten_autism_research_events_2009_prevalence.php

Also, in the current issue of The Autism Advocate, Martha Herbert, M.D., Ph.D. and Donna Ferullo contribute an engaging article, “Autism and the Environment: Is there a link?” The authors hypothesize that the rapid rise in diagnoses of autism and other conditions challenges the model of autism as an incurable genetic disorder. The concept of incurable does not capture the phenomena of how dramatically some individuals improve. The new model sees autism as a whole-body condition with complex genetic vulnerabilities and numerous environmental triggers. The Autism Society of America offers a free online course, “Autism and the Environment 101” by these same authors on the society’s web page at http://www.autism-society.org/site/PageServer?pagename=RESEARCH_ENVIROHEALTH_101

As Roy pointed out in the discussion on our Facebook Wall, “As far as I know a person with ASD does not become 'cured'. Yes, many get better (thankfully) but ASD and 'cured' seems to be an oxymoron. I have an ASD daughter and a nephew severely impacted by ASD.” In our 25 years of professional and personal experience, we see families struggling to get past the shock and the turmoil of the initial diagnosis and get the needed services for their children.

As current scientific data confirms, there is no single known cause or cure, but autism is treatable. The children and their families progress--some by leaps and bounds, some slowly, and some barely if at all. Such is the mystery of the spectrum we have come to know as autism. Such is the process of coming to terms with what is changeable and what is not, and which varies for each individual and family. This is how we think of recovery from autism. We have not seen children cured of autism, but we have seen them outgrow many symptoms. Early diagnosis and intervention has been found to be extremely important in developmental progress.

The need for state of the art services for the 1 in 91 children and their families who have been impacted by autism is urgent. Alarmingly, a two year old child just diagnosed with autism gets only a few hours of home based services per week, while experts on the National Research Council (http://www.nap.edu/openbook.php?isbn=0309072697 ) recommend that “services should include a minimum of 25 hours a week, 12 months a year, in which the child is engaged in systematically planned, and developmentally appropriate educational activity toward identified objectives.” (Executive Summary, p.6)
Parents shouldn’t have to beg and scream for these services. Many schools are poorly funded, especially in the inner cities and rural areas. Staff is often inadequately trained, and there are too few opportunities for developing social skills by including children with autism with their same aged peers.
It is heartening to have autism awareness in public focus. With the right services and supports, many people with autism can live meaningful lives within their families and communities.

Let’s do our best as a society to provide help and to find solutions--before it’s too late—for our children and grandchildren.

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