By: Dr. Doreen Samelson, EdD, MSCP Dr. Lindsey Sneed, PhD, BCBA-D
Innovations in Autism Care
Changes to public policies and to the autism spectrum disorder (ASD) diagnosis itself, along with increased general awareness of autism, have contributed to a dramatic increase in ASD diagnoses. According to the most recent CDC data, 1 in 44 children in the U.S. has been identified with ASD – up from 1 in 150 children in the year 2000. In California, where public policies have made ASD care more accessible, the figures are even higher – 1 in 26 children has been diagnosed with ASD.
Nevertheless, stigma persists – a fact that families of people with ASD understand all too well. An ASD diagnosis can elicit unconscious bias on the part of doctors, teachers, neighbors, and even friends. Just as tragically, these biases also rob the broader community of the many contributions that autistic people can bring.
Stigma is based largely on inexperience, misunderstanding, and fear. For much of recent history, behavioral health services for people with ASD were the responsibility of schools, which were chronically under-resourced and produced very few stories about successful treatment outcomes. As a result, many people have an outdated understanding of ASD or of the potential of autistic people to benefit from innovative behavioral health treatment modalities and choose their own path in life.
In fact, care options for autistic people have changed markedly in recent years, spurred in part by mental health parity legislation. For example, California law SB 946, enacted in 2012, mandated meaningful coverage for behavioral health, including autism, under state-regulated plans. This was a major milestone for ASD awareness, care and for behavioral health treatment more broadly, inspiring similar laws in states across the country.
This, in turn, led to an escalation in demand for behavioral health care resources, along with important research and the development of innovative treatment modalities designed to meet the need for high-quality, affordable care. One result of this is the trend toward parent-led applied behavior analysis (ABA) treatment, which our research has found yields comparable or in some cases better outcomes compared with practitioner-mediated ABA, in which most of the direct treatment is provided by a paraprofessional.
In addition to reducing the cost of care for both families and payers, parent-led ABA significantly increases parental self-efficacy, meaning parents feel more confident in their own abilities to parent their child(ren) (Sneed & Samelson, 2021). This only makes sense: when parents of children with ASD have access to resources and training, they’re less stressed, have more time for other members of the family and for themselves, and are better able to facilitate positive outcomes for their child, placing them on a path toward greater independence and self-sufficiency. Additionally, empowering families to participate actively in their loved one’s treatment has the added benefit of inspiring greater confidence to advocate for their child’s needs with teachers, physicians, and other caregivers.
Early and Equitable Treatment
Besides being a valuable first step in overcoming stigma, awareness is particularly important for encouraging early evaluation and treatment of ASD. Multiple research studies and our own clinical experience demonstrate that early treatment results in better outcomes in critical areas like language development (Ben-Itzchak & Zachor, 2007; Tiura et al., 2017).
To bring about meaningful change, it’s important that we not ignore the real needs of all autistic people and their families. While some autistic people may be able to advocate for themselves and leverage talents related to their autism (e.g., having an eye for detail), others, particularly those with co-occurring intellectual disabilities, will likely always have substantial needs for support. For efforts to eliminate stigma to matter, they must work for all the people who are subject to it today.
Toward Acceptance and Appreciation
The topic of stigma naturally leads to a discussion about the need for acceptance and appreciation. Acceptance includes not only the person’s strengths and way of being in the world, but also an understanding of any disability they might have and the support they need. Just as important as acceptance is appreciation of the path that a person wishes to take and the contributions they’re capable of making.
Acceptance and appreciation also extend to family members and others in an autistic person’s life. These people are living with autism, too, and deserve support in a way that fits the whole family’s needs.
This April, we can all make a difference in overcoming the stigma associated with autism. For many, this begins with reconsidering when and how to talk about autism. For others, it might mean extending an offer of employment to an autistic person. For still others, it means meeting the needs for support of an autistic person and their family. For all of us, it means moving closer to a world that reflects and celebrates everyone and enables all people to choose their own path.
Dr. Doreen Samelson, EdD, MSCP, is Chief Clinical Officer and Dr. Lindsey Sneed, PhD, BCBA-D, is Vice President, Clinical Excellence for Catalight Foundation.