Federal Policy Reports Through the Lens of Autism Well-Being

Significant federal policy work is happening in autism services and support. The Summary of Advances of the Interagency Autism Coordinating Committee (IACC), the advisory committee charged with coordinating federal activities concerning autism and providing advice to the Secretary of Health and Human Services on autism issues, as well as the Report to Congress on Supportive Services for People with Autism Spectrum Disorder, describing supportive services and resources for individuals on the autism spectrum and their families, were both released in the final months of 2023. (Interagency Autism Advisory Committee, 2023; National Autism Coordinator, 2023)

The federal government has increased attention to the needs of the autism community for the past couple of decades. But there is much more to do as these issues remain:

• High rates of underemployment and unemployment for autistic individuals
• Families and caregivers report tremendous stress and lack of access to services and supports
• Students with autism underperform in school
• Community service providers struggle to attract and retain talent
• The deeply rooted stigma and stereotypes about autistic people are pervasive

Social policies can indeed transform the lived experience of marginalized groups, including those living with autism (Jimenez et al., 2014). I was particularly interested in how these two current policy reports are addressing well-being in the autism community.

I used one of the most widely accepted models of well-being to assess these reports. The PERMA Model from the field of positive psychology defines the five building blocks of well-being as positive emotion, engagement, relationships, meaning, and accomplishment (Seligman, 2018). People want to live a life with meaning, and increasing the frequency and intensity of these five building blocks increases access to a high-quality life. Given the current well-being status in the autism community, I reviewed the IACC and the Report to Congress for action to promote well-being.

IACC Summary

The IACC annually releases a list of scientific advances representing significant progress in autism research. For children, the report recommends that pediatricians identify early mental health concerns in school-age children with autism through screening during well-child appointments and notes opportunities to refine screening and linkage efforts across pediatric care settings. Autistic people diagnosed as adults are more likely to have co-occurring psychiatric conditions than those diagnosed as children, and the report mentions that the timing of diagnosis should be assessed for how it affects well-being.

Report to Congress

The Report to Congress provides an overview of the supportive services that are currently available and the research that is being conducted on these supportive services. This report then closes with nine specific areas with ongoing areas of need.

Throughout the report, there is an acknowledgment that accessing the available services can be challenging, that the care systems are fractured, and that the services are not equitably distributed or available to all in need.

Another area of need noted in the report was workforce shortages. Recruitment and retention by all reports has achieved crisis levels in community settings. Many factors are associated with workforce shortages, but one noted in the report was low job satisfaction.

One well-being practice was specifically mentioned in the report: mindfulness therapy. Mindfulness has a growing evidence base with autistic individuals (Beck et al., 2020), as well as supporting the needs of parents (Cachia et al., 2016; Hartely et al., 2019) and professionals (Li et al., 2020) but has yet to be widely adopted.

Taking Action

Addressing access to care is a reasonable first step to promoting well-being. The burden of accessing care is tremendous for families. Indeed, family navigation is the first service noted in the Report to Congress.

Promoting the workforce's engagement and meaning could be one component of addressing low job satisfaction leading to high turnover. Corporate America has been incorporating well-being into its strategy and operations for many years; it is time for social services to join in understanding the importance of well-being for the workforce. Employers and Congress must address well-being to recruit and retain talent.

Both reports mentioned the prevalence of co-occurring mental health conditions. Though not widely applied in autism services and supports, positive psychology interventions, including well-being practices, can benefit mental health (Chakhssi et al., 2018). Autism service providers can take action by incorporating mindfulness practices for those for whom they provide service and for their employees.

Other evidence-based strategies, including gratitude practices and the application of character strengths, can promote job satisfaction for direct support professionals (Darewych et al., 2021) and decrease depression among caregivers (Martin et al., 2019). Strengths-based clinical practices are critical for supporting the well-being of individuals with intellectual and developmental disabilities (Schwartz et al., 2023).

Autism Essential Reads

Reducing Meltdowns in Children With Autism Spectrum

5 Reasons Why Girls' Autism Symptoms Are Often Missed

We can address mental health issues through well-being practices

Source: Proof Positive, used with permission

The autism community has an opportunity to address mental health conditions through the application of well-being practices. Getting started is as simple as writing down three good things that happen every day (Passamore & Oades, 2016). Start training your mind to pay more attention to good things and develop a more observant mind of the positive in life. Many good things are happening, including an increased policy focus on autism services and support. Change may not be happening quickly, but it is happening.

As the wise disability policy advocate Judy Huemann stated, “Change never happens at the pace we think it should. It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can. Gradually, excruciatingly slowly, things start to happen, and then suddenly, seemingly out of the blue, something will tip.”

Policy change takes time. The IACC and the Report to Congress state the need for change and provide some suggestions on how to make it happen. We can now put those changes into place to ensure everyone has access to well-being.