Dear Mr. Ellis,
Thank you kindly for your recent article Early Death in Those with Autism Spectrum Disorder. As you aptly stated in your piece, you anticipated that sharing these studies would shock your readers. We also hope that it motivates the autism community to reflect carefully on what we are doing (and what we are not doing) to change this very sad reality.
Both studies referenced in the article provide important data regarding the lifespan of people with ASD. The study published in the American Journal of Public Health in April 2017 suggested that people on the spectrum show a life expectancy to be 36 years old, as compared to 72 years old for the general population. About 28 percent of those with ASD die due to injuries. These data reflect the many risks facing children with ASD, including asphyxiation, drowning, accidental poisoning, and being hit by a motor vehicle (to name some of the tragedies witnessed by the autism community).
Furthermore, by sharing and emphasizing the data of the study published by the British Journal of Psychiatry in January 2018, you have raised awareness about the higher risk of suicide, and the need for both focused assessment and intervention, as well as future research. With a suicide rate nine times higher among those with ASD than the general population, it is a call to action. This Swedish study not only provided similar results but also suggested other causes of death. The data regarding the risk of heart disease, epilepsy, and also the diminished life-expectancy of people with ASD and a cognitive disability, 39.5 years, provides an important opportunity to rethink medical care.
At the risk of sounding cliché, it truly takes a village to address this unsettling disparity in life expectancy. It also takes a multifaceted, multi-system approach that looks carefully at education, awareness, information dissemination, and training of parents and caregivers, as well as all who come in contact with individuals with ASD including first responders. It is important for your readers to know that there are also many evidence-based strategies that target specific challenges that face individuals with autism such as diminished access to employment following graduation from school, safety skills in the community, and prevention of wandering, elopement, and bolting.
With respect to the promotion of health, we would like to direct your readers to our website, which offers a description of strategies for managing common concerns such as sleep, toileting, eating, inactivity, and restricted food repertoires, all of which can render individuals with autism more vulnerable to disease and poorer health outcomes. Additionally, there are resources for helping children access needed health care, including dental care. Awareness of these resources and strategies for addressing these challenges is essential.
We thank you again for writing this important article and hope that is helps inspire change.
Sincerely,
Amanda Bueno, MA, BCaBA
David Celiberti, PhD, BCBA-D
Association for Science in Autism Treatment
