News Analysis

Science Gives Hope To Families Facing Autism

Clara Sturak
   Associate editor
  
   Today and tomorrow, November 19 and 20, an historic meeting of heath professionals, scientists, elected officials, bureaucrats, parents and autistic individuals will take place in Washington, D.C. The first ever “Autism Summit Conference” will be held at the National Institutes of Health, and for the first time ever, representatives from all of these groups will set a national agenda to address a devastating neurological disorder – one that has had a name only since the mid-1940s, but one that, if you allow anecdotal evidence, has existed from the beginning of civilization.
   Autism is a brain disorder that begins in early childhood and persists throughout adulthood. It affects three crucial areas of development: communication, social interaction, and creative or imaginative play. For individuals and families facing the disorder, it’s much more than the sum of its parts.
   You may have read the frightening new statistics: incidences of autism spectrum disorders in the United States have risen 836 percent in the last decade. 836 percent! By any measure, autism is now an epidemic in this country. And similar statistics are popping up in Europe. In one of the wonderful ironies of this disorder, the sudden and huge leap in numbers has finally grabbed the attention of public health officials and scientists – significant research in the field is finally being done. It takes an epidemic.
   A little late in coming for autistic folks and their families who, for the last 50 years, have lived in a no-man’s-land — surviving with a disability virtually ignored by science, living with the most “mysterious” of conditions, isolated from friends and neighbors, and shunned by society – but incredibly hopeful for all members of the ever-expanding autism community.
   One of the most frustrating things to scientists and families alike is just how complex autism seems to be. There is no one answer for what causes autism, nor one method proven to best “manage” it, and there is no known cure. In fact, during the “Journey to Solutions” conference in Pasadena last weekend, more than one researcher stated that autism is likely not even one disorder, but rather a set of symptoms that could be caused by any number of things. (The head spins…)
   But, today, for the first time, scientists aren’t letting that intimidate them, nor are they allowing the infighting and competition that has been science’s MO keep them from collaborating.
   The final day of the conference focused on new research, and representatives from three organizations founded by parents of autistic children – the National Alliance for Autism Research, Cure Autism Now and the M.I.N.D. Institute — shared the work their scientists are engaging in.
   The National Alliance for Autism Research (NAAR) was founded in 1995, by parents who were frustrated at the lack of funding for autism research. At that time, the federal government set aside only $8 million for autism. Dr. Andy Shih told attendees that though many more people lived with autism than with muscular dystrophy or cystic fibrosis, many more millions were spent on “curing” those two diseases.
   Autism science was new when NAAR began. Even though the disorder had been identified decades earlier, it was (and often still is) treated as a mental illness, and treated only with therapy, if anything at all. NAAR recognized that the field was so new that researchers didn’t have the necessary preliminary data needed to receive government funding, and began to fund pilot projects that in turn allowed scientists to use the results to “leverage” federal funding for larger studies. NAAR also grants mentor-based fellowships that allow veteran researchers to pair with young scientists for pilot projects.
   Doctors Sarah Spence, a neurologist at UCLA, and Clara Lajonchere represented Cure Autism Now (CAN). Spence joined Lajonchere at CAN to head up the Autism Genetic Research Project, or AGRE. Citing a much used but still horrifying statistic, Lajonchere pointed out that 1 in 250 children in California has been diagnosed with autism, and 500,000 to 1 million Americans have autism spectrum disorders. Autism is the third most common developmental disorder after mental retardation and cerebral palsy. CAN, one of the largest private funders of autism research in the country, made grants of $12 million last year.
   The AGRE project is currently the largest collaborative autism gene bank. Built on the premise that collaboration amongst scientists is the only way to move autism research forward efficiently, the AGRE bank is open and available to all qualified researchers, so that the disorder, its causes, effects, treatments and possible prevention, can be studied from all conceivable angles.
   Spence and her AGRE colleagues are actively seeking out samples from families that include more than one autistic member (and since the incidence of a second child being born into a family with an autistic child is at least 25 percent more likely than in the general public, there are many) as well as families with autistic cousins.
   As of now, the AGRE bank has data from 434 families available, with more than 1,000 families registered to give samples. Though Spence reminded us that locating all specific genes that may cause autism is like looking for the proverbial needle in a haystack, at least they now have the haystacks to look through.
   Dr. Robert Hendren of The M.I.N.D. Institute — founded just six years ago by five fathers of autistic sons who couldn’t be satisfied with the “no cure, no effective treatment” messages they were getting from their sons’ doctors — blew the audience away with his presentation.
   M.I.N.D. (which is an acronym for Medical Investigation of Neurodevelopmental Disorders), researchers are looking into the causes of autism – from genetic vulnerability to environmental toxins like pesticides, to the mercury in vaccines. At the same time, researchers are conducting behavioral studies to look at things like “The Psychophysiology of Emotion in Neurodevelopmental Disorders,” and “Social Relationships in High Functioning Children.”
   A neonatal bloodspot project gathers blood that was taken from children with autism, cerebral palsy and mental retardation, as well as typically developing children, on their fist day of life – in order to look for markers that could lead to at-risk children getting interventions as early as day one. Treatment studies examine the effectiveness of “Video And Behavioral Modeling,” “Parent-Child Interaction Therapy,” and methods used to teach non-verbal autistic children, as well as the “Pharmacokinetics of Autism Spectrum Disorders.” And that’s just the tip of the iceberg.
   Today, in Washington, NAAR will officially announce a new national partnership amongst autism organizations and the National Institutes of Child Health and Human Development — to collaborate on a national project in which all the research currently being done on infant siblings of autistic children will be pooled. “All major researchers working on this project will work together and share results,” said Shih, giving the “late breaking news” scoop to conference attendees in Pasadena.
   Speaking of his daughter but also to the gathered scientists, conference organizer Jeff Strully said, “I believe the killer for people with disabilities is low expectations. We must keep reaching for the stars.” A message our politicians and public health officials should surely keep in mind as they map out the road to autism’s cure.
   Associate editor Clara Sturak is the mother of an autistic son – the loveliest boy in the world.