The July 8th quarterly meeting of the Interagency Autism Coordinating Committee (IACC) featured research highlights on regression, brain imaging to identify autism subtypes and an Autism Speaks-funded study to estimate autism prevalence with direct screening of all schoolchildren in a U.S. population. During a passionate public comment period, families urged greater attention to wandering and expressed concern about umbilical cord clamping and vaccines.
The IACC advises the government on federally funded autism research and related activities. It also provides a forum for public input on these issues.
In opening the meeting, IACC Chair Thomas Insel introduced Autism Speaks Chief Science Officer Robert Ring and Simon’s Foundation Director of Clinical Research Wendy Chung as the committee’s newest public members. Dr. Insel is also the director of the National Institute of Mental Health.
IACC Executive Secretary Susan Daniels announced that the Autism CARES bill now before the Senate includes a mandate for creating a new “National Autism Spectrum Disorder Initiative.” The initiative will place “a significant new emphasis” on supporting the needs of adults with autism, she said. Dr. Daniels also noted that this was the last meeting of the IACC under current federal funding. If the Autism CARES bill passes the Senate, a new IACC will be formed in September, she said.
The committee expressed special thanks to Autism Speaks Andy Shih for his role in developing the recent international resolution on autism adopted by the World Health Assembly of the United Nations. The resolution calls on all member nations to make autism a public health priority with meaningful investments in determining and meeting the needs of children and adults affected by the disorder. Dr. Shih, Autism Speaks senior vice president for scientific affairs, heads the organization’s Global Autism Public Health initiative.
“As a researcher, I used to be dismissive of such resolutions,” Dr. Insel commented. “But in meeting with health ministers in Asia, Africa and Latin American this past year, it became clear to me that they take these resolutions as their marching orders. It really makes a difference in the developing world. Kudos to Autism Speaks for getting this done.”
Guest speaker David Amaral described early findings from his team’s brain imaging studies at the University of California-Davis MIND Institute. In particular, he expressed hope that the different patterns of brain development seen in individuals with autism will help identify autism subtypes. This, in turn, holds promise for personalized treatments targeting the underlying cause of an individual’s autism.
Dr. Amaral also introduced Autism BrainNet, the research brain banking recently launched and funded by Autism Speaks and the Simons Foundation. Dr. Amaral is its founding director.
“Brain imaging is valuable to autism research, but it doesn’t give you the neurochemistry that can lead to new pharmaceutical treatments,” Dr. Amaral said. “For that we need postmortem brain tissue. Not just from a few individuals, but from hundreds.” (Read more about Autism BrainNet and donor registration here.)
Panel on autistic regression
At the invitation of the IACC, three leading researchers – Audrey Thurm, Rebecca Landa and Catherine Lord – discussed the latest understanding of regression in autism. Dr. Thurm is a staff scientist with in the Pediatrics and Developmental Neuroscience Branch for the National Institute of Mental Health. Dr. Landa is the founding director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore. Dr. Lord directs the Center for Autism and the Developing Brain, at Weill Cornell Medical College/ New York Presbyterian Hospital.
In autism, regression refers to a pattern of seemingly normal development followed by the loss of developmental skills such as language and social engagement.
That regression occurs is undeniable, the experts agreed. From the earliest accounts of autism, researchers have noted a subset of children with a striking loss of language and social skills.
Early studies estimated that noticeable regression affects a quarter to a third of all children with autism. More recent research using parent questionnaires found that the majority of children with autism lose one or more skills after acquiring them, Dr. Thurm reported. Additionally, subtle aspects of regression can easily escape the notice or recollection of parents and therapists, she added. These become more obvious when viewing videos taken across the first three years of life.
Most commonly, regression occurs in the second year of life, Dr. Thrum noted. However, her team found that the gain and loss of developmental skills occurs across a wide range of ages.
“Children with autism don’t fit easily into a regression group and a non-regression group,” she said. “There is no clear cutoff point.”
Her team’s analysis also detected that the repetitive behaviors associated with autism tend to appear before skills begin to be lost. “So the idea that there’s regression first and the development of autism after is not there in most children.”
Dr. Landa challenged the group to rethink what is meant by regression. “We’re used to thinking of it as language loss,” she said. “But it’s so much more.” Dr. Landa urged more attention to nonverbal social interactions and motor skills.
“There are kids who have extraordinary regressions,” Dr. Lord added. “However they are rare.” A developmental disorder not only changes as kids develop, Dr. Lord noted. “The disorder also changes their opportunities for learning.” This, she said, leads to a growing gap between the child’s skills and those considered “normal” for his or her age.
“Most of what we describe as regression is a common phenomenon with some skills decreasing while others increasing,” Dr. Lord concluded. “These changes can be extremely difficult for not only parents but also clinicians to detect." She also called for studies to both track these changes and link them with underlying changes in brain biology.
Families and self-advocates speak out
The IACC invites public comment both in person and in writing at each of its quarterly full committee meetings. (Information on submitting comment here.)
The day’s public comments began with Wendy Fournier, of the National Autism Association, calling on the federal government to do more to advance understanding and prevention of wandering. She reported on recent research documenting a significant increase in dangerous “bolting,” where a child or severely disabled adult with autism escapes from a safe, supervised environment.
“We believe that many cases can be prevented with effective communication,” she said, noting that an estimated 40 percent of individuals with autism are nonverbal. As such, she argued that assisted communication technology should be considered medical technology covered by health insurance. Similarly, she noted that sensory issues such as sensitivity to noise can trigger bolting. “We need medical technology to address these auditory issues. A medical model needs to be created with the support of the IACC.” Finally, Ms. Fournier called for FDA oversight of the “wild promises” being made by companies marketing GPS locating technology to the autism community.
Nicole Simon paid a return visit to the IACC, to again urge the committee to support research into premature umbilical cord clamping as a cause of brain damage and autism. She said this was the cause of brain damage in her son, who was diagnosed with autism and who died at 31 from a medication overdose in a group home.
James Williams presented on the need for social skills training in high school and career support programs for teens and adults with autism. To those providing career guidance, he urged greater attention to a job’s sensory and social requirements. “I’ve met individuals with autism who’ve had to change career paths because they couldn’t meet the work’s sensory-social requirements,” he said. He also spoke of the need for disability-related accommodation for the chronic health problems often associated with autism.
Tara MacMillan spoke of her strong belief that a vaccine reaction caused her son Isaac’s autism. Her daughters, ages 12 and 14, likewise spoke, calling for research on vaccines and autism.
Dr. Insel and other members of the IACC thanked each public-comment speaker and addressed their issues during a discussion period.
Committee member and autism self-advocate John Elder Robison commended the MacMillans for their courage in testifying and noted that “we have invested a significant amount in studies of vaccines. It has not been something that has been ignored.”
Committee member and parent Idil Abdul expressed hope that science would determine the environmental triggers involved in autism. She likewise voiced optimism that a bill recently introduced by Senator Chuck Schumer (D-NY) would result in federally funded locating devices for individuals with autism who are prone to bolting.
Update on Autism Speaks funded prevalence study
Psychologist and epidemiologist Laura Carpenter, of the Medical University of South Carolina, introduced the committee and audience to the South Carolina Children’s Educational Surveillance Survey (SUCCESS), funded by Autism Speaks. The study aims to improve estimates of how many children are affected by autism. In an expansion of the study, Autism Speaks is also funding the team’s analysis of how the new DSM-5 criteria for diagnosing autism may change prevalence estimates along with access to autism services.
The study involves in-depth, direct screening for autism of an entire community in South Carolina. An estimated 8,000 children, all born in 2004, will be screened.
SUCCESS is the first to use population-based screening and assessment methods to determine ASD prevalence in the United States. It’s modeled on an earlier Autism Speaks-funded study in South Korea. That direct-screening study found 1 in 38 South Korean school children affected by autism, many having gone previously undiagnosed.
Dr. Carpenter expressed hope that she would be reporting the results of the U.S. study next summer.
Mr. Britton, a self-advocate, discussed issues faced by those with Asperger syndrome. He emphasized that most can function well when given time to mentally prepare for events and, so, can benefit greatly from predictable schedules.
Ms. Burton-Hoyle described the College Support Program at Eastern Michigan University. The program goes beyond the requirements of "reasonable accommodation" mandated by law. It provides one-on-one support, career planning, mentors and more for students on the spectrum. Such programs vary in cost depending on a student’s needs but generally range $2,000 or more per year. She noted that Autism Speaks provides scholarships. (Learn more about Autism Speaks College Program scholarships here.)
Ms. Crandy described Nevada’s Autism Treatment Assistance Program. This state-run program provides several options geared to help children and transitioning adults. It also empowers parents to be an active partner in helping their child improve skills and gain independence. The program more than pays for itself by reducing the lifetime costs of autism, she said. Its challenges include long waitlists averaging more than a year.
In adjourning the meeting, Dr. Insel noted the irony that he opened the meeting by greeting two new members of the committee, but had to close it with the possibility that this might be the IACC’s last meeting. The IACC’s continuance hinges on passage of the Autism CARES Act, now before the U.S. Senate. Read more about the Act and Autism Speaks’ advocacy efforts here.