Autism Spectrum News had the unique opportunity to interview Thomas R. Insel, MD. Dr. Insel is the Director of the National Institute of Mental Health and the National Institutes of Health. We are delighted to present Dr. Insel and his candid discussion on the subject of autism.
Q: Dr. Insel, where are we currently in our understanding of autism?
A: In many ways we are still in the early days of autism research. But it is an active research area and many promising efforts are underway led by top scientists. We think of autism as a developmental brain disorder, but we do not know when, where, or how it develops. Most scientists consider autism to be the result of genetic risk as well as environmental exposures, but we have very few specific genes and even fewer specific environmental factors that have been empirically validated. We now recognize that autism is a heterogeneous group of disorders (Autism Spectrum Disorder, ASD). Indeed, we should probably become accustomed to speaking of “autisms” rather than “autism.” This heterogeneity is found not only in the clinical features, but almost certainly in the biological bases of ASD. We need much more information to understand the various autisms. What are the specific risk factors for each? And what are the best interventions for a given individual on the autism spectrum?
Q: What areas of research is NIMH exploring that might hold a key to unlocking the mysteries of the cause and treatment of autism?
A: NIMH is only one of several government and private sources of ASD research funding, including other institutes within the NIH, CDC, Dept of Defense, Autism Speaks, and the Simons Foundation. NIMH supports a broad range of research including basic molecular studies, clinical trials, and services research which measures the effectiveness and costs of services in different settings. In virtually every area of biomedical research, genetics is transforming our understanding of human diseases. This is just beginning to happen with ASD with more than 10% of people with autism having a known genetic lesion. While we have yet to identify a genetic “cause” in the other 90%, common variations may confer risk for developing autism after exposure to environmental factors. In many areas of medicine, genetics has led to the development of novel targeted treatments or prevention strategies. Autism genetic research has yet to yield this type of treatment or prevention but it is beginning to identify sub-types of the disorder and already it is clear that many different mutations can lead to ASD. NIMH also supports research on the efficacy and safety of various treatments, from behavioral interventions to specific diets to medications. Ongoing clinical trials are investigating the value of a range of medications, including anti-inflammatories and antidepressants. One of the most exciting areas of research has been the study of infants at high risk of developing ASD. These “baby sib” studies have demonstrated that 50% of infants who will develop autism can be identified by their first birthday. Early detection and early intervention is one of the most promising areas for ensuring the best outcome for children at risk.
Q: What do parents and members of the treatment community need to know about early detection and treatment of autism?
A: One of the biggest shifts in medicine in the past two decades has been the emphasis on early detection and early treatment. In cancer and heart disease, this approach has led to profound improvements in outcomes. We can expect the same effects with autism. Most scientists believe that the earlier ASD can be detected and treated, the better the outcome for most children. Ideally, we would like to identify the disorder or risk for the disorder with a biomarker, long before any behavioral signs develop. We are not there now, but this needs to be a goal for the future. Today, parents need to know the importance of early detection based on behavioral signs. The CDC and Autism Speaks have sponsored campaigns to increase awareness and information on early red flags that help parents distinguish between typical and delayed development. The American Academy of Pediatrics now recommends screening all children at 18 months and again at 24 months (http://www.aap.org/healthtopics/autism.cfm). Nevertheless, too many parents find that their concerns are dismissed or when a referral for evaluation is recommended, precious months may be lost waiting for an appointment. Awareness is necessary but not sufficient if resources for diagnosis and treatment are not available. Fortunately, with increasing access to information on the Internet and growing awareness of the needs of parents with autistic children, resources are becoming easier to find in many parts of the country.
Q: What are your hopes for the future of autism education, treatment and research?
A: Recently I have been reading about the polio epidemic of the 1950’s. This was a time of broad public concern and confusion, dominated by a range of theories and therapies, all advocated passionately in the absence of scientific data. Fifty years later, none of this matters because polio is largely a history lesson and not a threat. I would like my grandchildren to read a book about autism as a history lesson because every child at risk for autism has grown up to enjoy a full and productive life.
Q: How can Autism Spectrum News best serve the needs of the family, treatment, and scientific community?
A: I am pleased to see the initiation of Autism Spectrum News, and to be a part of this inaugural issue, as this publication and others like it play a critical role in ensuring the communication of research findings and evidence-based treatment options to clinicians and families. The dissemination of information is a vital component of public health. I hope that Autism Spectrum News will help individuals with ASD and their families receive the best information so they can make the best choices.