For the first time since 2019, the world’s premier autism research conference was back in person, this year in Stockholm, and I attended with my colleagues Dr. Linsey Sneed and our CEO Susan Armiger. We were reminded of how important it is – both for us as researchers and clinicians and for Catalight as a provider and research organization – to attend these kinds of conferences and contribute to the global goal of better care and outcomes for people with autism spectrum disorder and their families.
We presented recent work on the development of Catalight’s wellbeing scales, and new findings on what parents are looking for when they seek a paraprofessional for their child’s care. And just as importantly, we engaged in conversations with researchers from all over the world to discuss common themes not only in autism research but in delivery of care.
At Catalight, we believe in developing approaches to care that recognize one size does not fit all when it comes to autism treatment. This was a resonant theme, among others, at the International Society for Autism Research’s (INSAR) annual conference, held the first week of May. Threaded throughout, it was clear that Catalight was uniquely poised to offer perspective, as both an organization out in the community providing on-the-ground care to a large population, and as an organization with its own groundbreaking research institute. In particular, many parts of the world are like some of northern California, smaller Hawaiian islands and the rural United States in that autism care infrastructure is often lacking. means alternate modalities of care are important when applied behavioral analysis (ABA) is not the right option and/or when professionals who provide ABA or other therapies aren’t readily available.
Catalight has researched and championed parent-led interventions, including parent-led ABA as not only equally effective modalities of care as also as a solution that helps solve challenges like the issue of insufficient autism care infrastructure. The goal of parent-led ABA is to give parents the tools to support and teach their child using basic ABA skills. By eliminating the need for all or some scheduled sessions with an outside practitioner, families have more flexibility to engage in everyday activities, work, and live their lives.
While traditional practitioner-led ABA remains the standard for autism care in the United States, it’s time-consuming and expensive; often 40 hours of ABA per week are recommended, despite lack of research support for this amount of hours. Parent-led ABA, however, can be woven in to parent-child interactions throughout the day, as opposed to being formally scheduled. The same is true for other parent-mediated interventions such as naturalistic developmental behavioral interventions.
Parent-led ABA is effective and research has also showed it:
- To be as effective as practitioner-led ABA (Sneed, 2021)
- Improve communication skills and social skills
- Is more effective than general parent training about autism when it comes to reducing disruptive behavior (Bearss et al., 2013; Postorino et al., 2017; Scahill et al., 2016)
- Results in improvement in activities of daily living, such as bathing or showering, dressing and toileting (Scahill et al., 2016)
- To increase parent efficacy–the parent’s belief that they have the ability to be successful in a particular task–in turn decreasing parent stress (Bearss et al., 2015; Rogers et al., 2019; Siller et al., 2013).
When we spoke with people from other parts of the world, we learned that other therapeutic approaches not led by a formally trained practitioner were go-to strategies where resources were lacking. In India, for example, we learned that community members are often trained to help provide support in absence of psychologists or other professionals. Additionally, in many parts of the world, ABA is not accepted as the best approach for care. The idea of family or community caregiving that can approach what professionals and paraprofessionals can do was thematic throughout the conference and many conversations we had.
Wellbeing is defined as the measure of a person’s overall happiness, satisfaction with life, and positive outlook on life. It’s a measurable umbrella outcome that carries across the highly diverse ASD population–across levels of functioning, social circumstances, family dynamics, intellectual disability and mental health, and much more.
“We had been looking for a wellbeing scale that met our particular needs,” Dr. Sneed said. “Specifically, we wanted a scale that had been normed with our population and one that was short, less than 20 questions, to increase the probability of it being completed.”
Three years ago, we set about developing our own scale. Because Catalight serves a population of about 12,000 people with ASD and their families, the scale has now been used more than 3,000 times, which has allowed development of psychometrics. When we shared the size of our respondent pool to other researchers, they were astonished, commenting that they were lucky to have a few dozen. That is a key distinction between Catalight as a care provider versus a purely academic institution.
What Parents Want in a Paraprofessional
I presented Catalight’s research on what parents are looking for when they are seeking a paraprofessional for autism care for their child. Despite the common use of paraprofessionals, we found that parents’ perspectives had not been well-explored. In our study, we examined parents’ perceptions of paraprofessional competency in ABA by using a thematic analysis of 127 written parent responses to a satisfaction survey sent to families every six months. The most frequent theme for both positive and negative parental perceptions of paraprofessionals was experience and knowledge.