Individuals with autism and other developmental disabilities are at higher risk of self-injury, aggression and other severe behaviors, but families are often unable to access effective treatments. A new guide for clinicians is designed to change that.

The five-part document from Autism Speaks offers pediatricians and other clinicians background information on challenging behaviors and details how to screen for and assess these issues as well as guidance on evidence-based treatments. It also includes a toolkit for centers looking to create a successful program to treat severe behaviors.

“Despite the prevalence of these behaviors, the majority of families lack access to appropriate and effective treatments,” said Jacqueline Perlmeter, program manager of clinical programs at Autism Speaks. “This lack of access to quality care can lead to poor treatment outcomes, limitations on skill development, poorer quality of life and inability to participate in the community that they live in. In addition, these behaviors can lead to substantial physical and emotional harm to themselves and others.”

In light of that, Autism Speaks brought together leaders in autism care and research as well as individuals with autism and family members in 2020 for its Thought Leadership Summit on Challenging Behaviors. Work groups formed after the summit established several recommendations and priorities that served as the basis for the guide for clinicians.

“This is a highly underserved segment of our community who often cannot access the behavioral and mental health services they need, leading to worse outcomes and a higher likelihood of crisis situations,” Perlmeter said. “By publishing this guide, we are working to ensure that local providers — not just autism specialists — have the knowledge and skills they need to effectively serve this population.”

The guide indicates that severe behaviors can include head banging and other self-injurious behaviors; aggression like hitting, kicking and biting; pica; property destruction and other disruptive actions; as well as elopement. Challenging behavior can present differently in each individual with autism, the guide notes.

Autism Speaks said that a separate guide aimed at helping families learn about severe behaviors and how to access care is also in the works.

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