In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.
Lay abstract:
This exploratory study used the Future of Families and Child Wellbeing Study (FFCWS) to compare the financial well-being of families of adolescents with and without autism. Recognizing the gap in autism research, which predominantly measures financial well-being through household income, this study employed a multidimensional approach, including indicators of assets, material hardships, and both formal and informal safety net access. We found that families with autistic adolescents experienced greater financial instability, including a higher likelihood of substantial income drops and bankruptcy. Despite similar access to food assistance programs, food insecurity was notably higher among these families, especially in the lowest income brackets where nearly all families utilized food assistance. Furthermore, material hardship prevalence (46.4%) exceeded income poverty (29.8%), among families with autistic adolescents. A substantial proportion of middle- to high-income families also experienced hardships, had no assets, and lacked connection to safety net programs, suggesting that income-based metrics may not fully capture the financial challenges families face. The findings highlight the need for policies that acknowledge the broader financial needs of families with autistic adolescents, underscoring the inadequacies of current support systems.
From the article:
Our study found significant financial instability in families with autistic adolescents, who faced a higher likelihood of substantial income drops and were almost twice as likely to declare bankruptcy compared with families with non-autistic adolescents. Challenges uniquely exacerbated by the demands of autism care, including employment disruptions and high service expenditures, may contribute to the greater risk of experiencing substantial income drops and increased likelihood of bankruptcy, especially for single-parent households (McAuliffe et al., 2017). Despite these challenges, these families reported less access to liquid assets, such as the ability to secure loans or cosigners, compared with their counterparts. This economic volatility underscores the critical need for policies focused on asset accumulation and strengthening informal support networks to better support these families’ financial stability. Interestingly, while high food insecurity remains a severe issue, families with autistic adolescents do not face greater risks regarding bill-paying and utility hardships compared with other families. This difference may be linked to the higher rates of SSI/SSDI receipt among autistic adolescents compared with those without autism, despite families of autistic adolescents receiving lower annual payments than their non-autistic counterparts. However, the high prevalence of food insecurity amid low bill-paying hardships suggests a targeted need for programs specifically enhancing food access.
