Sleep and the Profound Autism Community: Addressing Needs, Elevating Support

Mar 31

For families of individuals with profound autism, sleep problems aren’t just frustrating—they’re deeply disruptive and often inescapable. For too long, these challenges have been minimized or misunderstood. But as we grow in our understanding of the autism spectrum, it’s time we give the profoundly autistic community the specific support it deserves—starting with sleep.

The term “Profound Autism” was established by the Lancet Commission (2022) and later supported by the CDC (2023) to describe individuals who require 24/7, lifelong supervision or care, often presenting with an IQ below 50, limited or non-verbal communication, and the need for significant adaptive supports. These individuals are not just at one end of the spectrum—they are a population with unique and complex needs that must be recognized and supported with specificity, not generalization.

The Profound Autism Summit, happening April 10–11 in Boston, is the second of its kind entirely dedicated to these learners and the caregivers who support them. I’m honored to be speaking on Friday morning about the role of sleep in this population and how BCBAs can more effectively support healthy sleep—even in the most complex cases.

Sleep Challenges in the Profound Autism Community

Sleep disturbances affect up to 80% of the broader autism population—but for profoundly autistic individuals, those disruptions can be even more intense, more frequent, and more difficult to resolve. A 2021 study by Cohen, Simonne et al. assessed over 20,000 nights of sleep from 67 individuals with low-functioning autism (now categorized as Level 3, or profound autism) and found that night-to-night variations in sleep duration and timing significantly predicted daytime behavior in 81% of participants. Inconsistent sleep didn’t just affect rest—it impacted mood, behavior, and safety.

And yet, there is a significant gap in research and resources when it comes to effective, ethical, and individualized sleep strategies for profoundly autistic learners—especially those with severe behavior profiles.

How Can BCBAs Help?

As behavior analysts, we are uniquely positioned to assess patterns and implement behavior-based strategies that align with the learner’s developmental and behavioral profile. When it comes to the profoundly autistic community, that support begins by rethinking how we approach sleep—and it never includes extinction.

Here are a few guiding principles:

1. Tailor the Sleep Plan to the Learner’s Development and Behavior

Schedules matter. Too often, bedtimes are based on assumptions rather than age-appropriate sleep needs. Many teens in the profound autism community are still put to bed very early, which can result in increased night wakings, resistance, or prolonged sleep onset.
Use data from ABA sessions to guide and rehearse parts of the bedtime routine when sleep is not expected (e.g., healthy separation from caregivers within the home setting, tolerating transitions away from a highly preferred activity, or entering the bedroom without protest).
Remember that shaping and fading will be more effective—and more humane—than any abrupt behavioral change.

2. Recognize the Role of Medical Complexities

Sleep apnea, seizures, reflux, and genetic comorbidities are more common in profoundly autistic individuals and may be influencing the very behaviors we’re tasked with supporting.
BCBAs aren’t medical professionals, but we are vital in supporting families as they advocate for evaluations and plan behavior support around those conditions.
Set realistic expectations and individualize goals based on medical realities, not just ideal schedules.

3. Create Sleep-Supportive Systems That Work With Behavior, Not Against It

Preference assessments can help caregivers identify transitional activities or calming routines that don’t provoke escalation.
Visuals, priming, and scheduled rehearsals can give learners predictability and support.
Use ABA principles not to change the learner, but to shape the environment and routines around the learner in a way that prioritizes dignity, sleep, and sustainability.

Sleep Support Is Possible—Even in the Most Complex Cases

The message I want to share with every BCBA and caregiver is this: you are not without options. Sleep can improve. It may not look “perfect” on paper, but measurable progress is possible, and it can dramatically improve the quality of life for the learner and their entire family.

If you're attending the Profound Autism Summit (virtual option available), I would love to connect. I’ll be speaking Friday morning on the specific ways we can ethically and effectively support better sleep in the profound autism community.

If you're not attending, I encourage you to begin this work wherever you are. Let’s shift the conversation from behavior reduction to sustainable, compassionate care that includes restorative sleep as a core component of support.

Want to learn more about the summit?
🔗 https://www.profoundautismsummit.org/

And if sleep support is something you’d like to specialize in, I’d love to help you get started. Explore how sleep training and certification can enhance your practice and better support the families you serve.