Towards Interventions Across the Autism Spectrum
By Joshua Gordon on April 26, 2017
In recognition of Autism Awareness Month, I am highlighting NIMH’s efforts at improving understanding of autism spectrum disorder (ASD) and developing effective interventions and supports for individuals with ASD. As I wrote in my last message, ASD describes a heterogeneous group of conditions that share several core features, including difficulties with social communication and repetitive behaviors. In that message, I shared what is known about the causes of ASD, focusing on the fact that from our understanding of genetic and environmental factors, it is clear that symptoms begin early, even in the developing fetus and certainly by six months of age. I also noted that there are myriad causes of ASD, with numerous genes involved, and that this variability likely leads to variability in how the condition presents.
This variability adds to the challenge of diagnosing individuals with ASD and linking them to the appropriate services. In this message, I’ll discuss what we are learning through research on these challenges, and what we are doing to try to find out more.
Improving outcomes: The earlier the better
Although the Centers for Disease Control and Prevention says that it is possible to diagnose ASD in children at age two, the median age of diagnosis is older than four. 1 Moreover, research suggests that identifying early signs and symptoms of the disorder could help diagnose children even sooner.2 And we know this is really important, since children do better when interventions are started earlier.3
First things first: It is challenging to develop effective interventions for ASD due to the variability in the condition. There is great variability within and across these domains of functioning, and interventions are needed that address individual needs.
There are therapies that help improve outcomes, enabling many children with ASD to learn skills that help them function better. Among these are comprehensive therapies, targeting a range of ASD-related deficits. An example is the Early Start Denver Model (ESDM), in which a trained therapist works with a child and his or her parents in an approach that makes use of everyday activities to help children improve across the domains affected in ASD. Children at ages 13-30 months receiving ESDM in a clinical trial improved in communication, motor, and daily living skills.4 Follow-up studies found that children receiving this early intervention showed patterns of brain activity, measured by EEG, closer to typically developing children when compared with children receiving more usual treatment.5 Two years following the end of the intensive treatment, the children’s gains in terms of core symptoms were still evident.6
Another approach, parent-mediated social communication therapy (PACT), involves a therapist working with a parent and child in a way that emphasizes the parent’s role, enhancing the parent’s sensitivity to the child’s communication and using play and verbal strategies to encourage communication skills. Six years following the end of treatment, children continued to have reduced symptoms relative to children who received treatment as usual.7 In another recent trial, a parent-supported social communication intervention delivered to children between 9 and 14 months of age with a sibling with ASD, but who have not otherwise been identified as being other than typically developing, resulted in improvement in autism prodromal symptoms, sustained two years following the intervention.8
To maximize the efficacy of these treatments, we need to be able to identify children with ASD early, and to ensure access to evidence-based interventions and services. To enhance early identification, the NIMH funded the ASD Prevention, Early Detection, Engagement and Services Research (PEDS) Network, which is comprised of five separate but coordinated studies to test a range of strategies for universal screening and early engagement in treatment. The various study sites have agreed to collect common data elements, pool their resources, and share their data in a truly collaborative effort that will enhance the reliability and impact of their findings. These studies are expected to be completed in 2019.
The NIMH participates in other research efforts aimed at developing novel treatments and enhancing implementation of existing ones. For example, we partnered with four other institutes—the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Institute on Deafness and Other Communication Disorders, the National Institute of Neurological Disorders and Stroke (NINDS), and the National Institute of Environmental Health Sciences—to establish 11 Autism Centers of Excellence across the country. These centers focus on causes and improved treatment, as well as studies of specific populations affected by ASD, including females and African Americans. In a partnership with the Simons Foundation for Autism Research Initiative, NICHD, and NINDS, the NIMH supports a multi-year project to develop and improve clinical research tools for studying ASD. Part of the Biomarkers onsortium, this project will test and refine clinical measures of social impairment in ASD to better evaluate potential behavioral and drug therapies (see a 2015 NIMH press release on this effort).
Treatment across the lifespan
While continued research on interventions and services for young children with ASD is crucial, research on the needs of transition-age youth and adults with ASD is equally important. Despite this clear need, we know relatively little about how best to support individuals with ASD as they transition to adulthood. Postsecondary education and vocational training, supported employment, appropriate residential opportunities, continued development of social skills, and access to services and supports, including psychosocial interventions and technological supports, are all thought to be helpful to transition-age youth and adults. Nonetheless, the evidence base in support of these approaches is lacking, and precisely how best to meet the needs of transition-age youth and adults this need is unclear.
The NIMH is investing in research to remedy this lack of information. The ServASD initiative is funding efforts to develop and test the effectiveness of community-based interventions that can be delivered across a variety of service systems to improve functional and health outcomes of individuals with ASD throughout the lifespan, including the transition from youth to adulthood. These strategies take into account the structure and staffing of the service setting, such as educational, vocational, healthcare, and independent living programs, to ensure that, should the interventions prove effective, they can be delivered consistently and sustainably. Projects funded are aimed at developing and testing models for the delivery of needed services, including screening services, early intervention, transition services, and services for adults that target employment, social relationships, housing, and independent living.
Following up on the first successful round of ServASD grants, the NIMH issued two new funding announcements aimed at services for transition-age youth (RFA-MH-17-200) and adults (RFA-MH-17-205) with ASD. These announcements specifically target innovative models to help youth transition to adult supports and optimize the independence and functioning of adults with ASD.
The NIMH of course does not stand alone in the effort to improve the health and well being of individuals on the autism spectrum. As noted above, most of our research investments are complemented by significant investments made by our sister NIH institutes. Moreover, the Interagency Autism Coordinating Committee (IACC), of which I serve as chair, is tasked with ensuring that all government agencies that are involved in autism research and service efforts work together towards common goals. The IACC is responsible for creating and updating a government-wide strategic plan for ASD which addresses both research and services issues. The committee is in the midst of revising this plan, which should be completed within the next few months. Implementation of evidence-based practices for ASD interventions and services for all people on the autism spectrum is a recurring theme throughout the upcoming IACC Strategic Plan.
Efforts to develop and make appopriate interventions, supports and services available to individuals with ASD and their families are every bit as crucial as the efforts to understand the underlying biology I highlighted in my last message. For while increased understanding promises the possibility of transformative treatments in the future, we must also work to help those struggling now. NIMH and our partner institutes at NIH are committed to ensuring progress towards both short term and long term goals focused on addressing the needs and improving the lives of those living with ASD.
1 Baio J. Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2010. MMWR 2014;63(SS02):1-21
2 Zwaigenbaum L et al. Early Identification of Autism Spectrum Disorder: Recommendations for Practice and Research. Pediatrics. 2015 Oct;136 Suppl 1:S10-40. PMID: 26430168
3 Zwaigenbaum L et al. Early Intervention for Children With Autism Spectrum Disorder Under 3 Years of Age: Recommendations for Practice and Research. Pediatrics. 2015 Oct;136 Suppl 1:S60-81. PMID: 26430170
4 Dawson G et al. Randomized, controlled trial of an intervention for toddlers with autism: The Early Start Denver Model. Pediatrics 2010 Jan;125(1):e17-23. PMID: 19948568
5 Dawson G et al. Early behavioral intervention is associated with normalized brain activity in young children with autism. J Am Acad Child Adolesc Psychiatry 2012 Nov;51(11):1150-9. PMDD: 23101741
6 Estes A et al. Long-Term Outcomes of Early Intervention in 6-Year-Old Children With Autism Spectrum Disorder. J Am Acad Child Adolesc Psychiatry. 2015 Jul;54(7):580-7. PMID: 26088663
7 Pickles A et al. (Green) Parent-mediated social communication therapy for young children with autism (PACT): long-term follow-up of a randomised controlled trial. Lancet. 2016 Nov 19;388(10059):2501-2509. PMID: 27793431
8 Green J et al. Randomised trial of a parent-mediated intervention for infants at high risk for autism: longitudinal outcomes to age 3 years. J Child Psychol Psychiatry. 2017 Apr 10. doi: 10.1111/jcpp.12728. [Epub ahead of print] PMID: 28393350