New Guide Will Help Clinicians Better Care for Individuals With Severe Autism Spectrum Disorder

Child on floor crying

According to Healthline, “Autism spectrum disorder is the diagnostic label given to a broad category of neurodevelopmental disorders.” These neurodevelopmental disorders include mild autism (formerly known as high functioning autism or Asperger’s syndrome) or what is now known as Level 1, and severe aka profound autism or level 3.

Level 3 ASD bears little resemblance to the mild autism that many have come to recognize from TV programs such as “Love on the Spectrum” and “Atypical.” And effective help for people with Level 3 ASD can be hard to come by.

People with Level 3 autism are often non-verbal and may exhibit dangerous behaviors that can cause harm to themselves and others.  Historically, clinicians have found themselves at a loss to help patients and families with behaviors such as head-banging, hitting, kicking, biting, destruction of property and more. Few clinical programs are designed to meet the needs of this population. But a new guide created by Autism Speaks may provide hope.

“Program Development and Best Practices for Treating Severe Behaviors in Autism” is designed to provide clinicians with the resources to help their severely autistic patients and their families in various ways. The guide, which came out of Autism Speaks’ 2020 Thought Leadership Summit on Challenging Behaviors, includes information for clinicians struggling to understand challenging behaviors in people with severe autism. It teaches clinicians techniques on how to intervene when severely autistic individuals are actively experiencing these behaviors. Additionally, the guide includes a toolkit for clinicians aiming to develop programs that can help these individuals and their families.

The guide focuses on various topics that relate to individuals with Level 3 ASD and includes an inventory of challenging behaviors; a screening tool for assessing and measuring behavior; practical treatment solutions based on evidence-based research; and a tool kit for clinicians interested in developing programs for individuals with severe behavioral problems.

In an interview with Disability Scoop, Jacqueline Perlmeter, program manager of clinical programs at Autism Speaks, explained the need for the guide.

“Despite the prevalence of these behaviors, the majority of families lack access to appropriate and effective treatments. 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.”

Added Perlmeter: “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.”

Autism Speaks is currently working on a similar guide geared for the families and non-clinical caregivers of people with severe ASD. Stay tuned.