Sleep & Autism: Who will treat our children?
As published in Babat, Nov. 8, 2023.
Sleep problems are pervasive in the autism community with an average range of 60-80% of families reporting some level of sleep challenges with their child. Sleep health is rapidly gaining popularity in health and wellness circles as research displays over and over again the significant health risks of even one poor night’s sleep, let alone persistent sleep problems occurring over weeks, months, and in many cases years. There are adult sleep coaches, baby sleep consultants, newborn sleep gurus all leaping into action to eradicate the plague of poor sleep for children and their exhausted parental counterparts. But where is the cheering section for autistic sleep health?
There is an erroneous assumption that sleep problems somehow go hand-in-hand with an autism diagnosis, an assumption adopted by many pediatricians and somehow substantiated by social media outlets which has led many ASD families to live with poor sleep, the way they live with noise sensitivities and repetitive behaviors. Sleep quietly slides to the back burner with other autistic characteristics and tendencies, but let me be loud and clear on this: children diagnosed with autism have equal internal motivation, potential, and ability to achieve healthy amounts and quality of sleep as their same age peers. As with many dimensions of autistic behavior, however, it may take a little more time and a lot more finessing to achieve our outcomes.
More recently in the BCBA community, I have seen a backing-away from treating autistic sleep problems. We don’t learn about sleep in BCBA school, so there is an interesting assumption that sleep is not within our scope of practice. Perhaps it’s the notion that sleep problems are medical. Fair enough because some are! But what I see most often is BCBAs wanting to help, knowing that sleep problems are largely behavioral in nature, but feeling ill-equipped to implement a treatment plan. And it’s true; BCBAs coming out of their coursework and field hours do not have the complete set of tools to treat sleep problems. But they do have about 90% of the tools, so that’s saying something! Yet still, it feels the more responsible path to suggest a family seek other disciplines for treatment instead.
In the absence of sleep-informed BCBAs, what else is available for our families regarding sleep support? Who will guide families toward better sleep? Who will design their sleep plans? Who will advocate for age and ability-appropriate protocols? Who will think outside the box to individualize strategies for unique needs and family values? Who has all the tools? Is it the pediatrician? The sleep clinic? A sleep consultant? The pickings are unfortunately slim.
Pediatricians get a whopping average of about 5 hours dedicated to the science of sleep during medical school. If you think this 5 hours includes age-specific sleep norms, sleep dependencies, sleep schedules, why those variables are relevant, and what to do when these systems go south…you’d be wrong.
What about a certified sleep consultant? They know all that stuff, how about one of those? A certified sleep consultant could be a better choice, definitely. But sleep consultants are typically trained in one system or a philosophy that comes with a few different methods (many of which are ABA in nature, as a matter of fact). There exists no standard of practice across certification programs or certificants, and many different certification types to choose from. It is very difficult for families to recognize that when they are choosing a sleep consultant, they are choosing the philosophy or system that consultant was trained in. Not every system is right for every family, and it is hard to know which methods the consultant was trained in without researching their program. Additionally, certified sleep consultants typically treat children birth to age 5, thereby eliminating our school-age and teen population from their services. Last problem? They are definitely not trained in autism-related needs and considerations, and are (in my opinion and observation) categorically unprepared for the levels of problem behavior a learner diagnosed with ASD is capable of producing.
Ok then, how about a sleep clinic for further assessment, diagnosis, and ongoing treatment. Great! A sleep study or a visit to a sleep clinic is a responsible, first-line of defense to rule out medical problems impeding sleep. Except when the child’s tests come back negative for sleep disorders and related neurological or physical impairments. Then the family is back to square-1 or is sent home with a prescription intended for short-term use and doesn’t tend to remediate the sleep problem for very long.
Given the options currently available to treat autistic sleep problems effectively and sustainably, it is my opinion that BCBAs are the ideal candidates for the job. Not only in the autism community, but I deeply believe we are the only discipline with a toolbox so robust, we are the best fit for sleep remediation of all learners. But we have to do better.
BCBAs possess the exact skillset needed to implement ethical, comprehensive, and effective sleep plans. We are the best fit for challenging sleep because we have an endless bucket of evidence-based strategies to draw from. We understand analysis and variables. We walk into problem behaviors with confidence and curiosity, not fear, and we do it all day. We can peel apart a skill, down to its bare bones and identify the individual steps to put it all back together again in a more sustainable and socially valid form. We understand family dynamics and values, cultural considerations and individual family goals. We can access tools like shaping and fading, visual supports and verbal cues, setting events and managing contingencies. And we can often do it all without eliciting more problem behavior.
There is a gap to be filled here: we need more BCBAs accessing education on sleep. With well over 50% of our learners experiencing some level of sleep problems, we owe it to our community to retrieve that information and convert it into meaningful treatment. As ABA providers, we can no longer afford to NOT provide our BCBAs with sleep-focused CEUs and training. I believe in our field, I believe in our practitioners, and I believe the families we serve deserve the absolute best of what ABA has to offer. And what is better than a lifetime of healthy sleep and energized days.
