By Jill Escher
Over the past three decades, autism caseloads have increased dramatically across public programs, including special education, vocational rehabilitation, state developmental disability services, and Medicaid. This phenomenon has also been witnessed in the welfare program called Supplemental Security Income (SSI), which provides cash benefits to poor elderly people and people with severe disabilities who cannot earn a living: between 2004 and 2014, the proportion of children with autism surged from about 8% to nearly 21% of those with major mental disorders, the largest increase for any diagnostic group.
Now a new study has found that adults, age 18 and up, with autism also represent a growing share of SSI awards. Recipients with autism increased from 37,041 in 2005 to 158,105 in 2015, a 327% jump. The lead author was Kristy Anderson, who worked with Paul Shattuck, Ph.D of the A. J. Drexel Autism Institute in Philadelphia. The Drexel group is one of the few looking at crucial questions of economic and program burden posed by the growing population of adults with autism.
Under Social Security rules, eligibility for federal SSI payments — which for this group with autism averaged $6,527.40 per year in 2015, a sum which is often supplemented by state payments — depends on the applicant having a documented disability which prevents the individual from engaging in substantial gainful activity. The disability must have lasted or is expected to last a minimum of 12 months or result in death. The system is notoriously picky, and routinely blocks applicants who are seen to have any capacity for gainful work.
The study showed a steady increase in the number of SSI recipients with autism from 2005 to 2015, despite overall declines in total SSI awards given to adults with mental disorders. The study also found that total SSI payments to adults with autism amounted to nearly $1 billion in 2015, almost a $820 million increase from 2005 when adjusted to 2015 dollars.
Although the authors at one point tossed out a speculation — seen far too often in papers like this — that the striking autism caseload growth could perhaps be partly attributable to diagnostic shifts or “awareness,” the paper provided no evidence this could be the case. Indeed, SSI eligibility is a high bar, an objective standard based on carefully ascertained functional incapacity of the applicant, not on any amorphous diagnostic category. Most adults with autism had ASD listed as the primary impairment in both 2005 and 2015 (72.2% and 75.3%), suggesting that even co-occurring ID did not influence the categorization. In addition, while there was a decline of new awardees in the intellectual disability and other mental disorder categories, the authors noted that the magnitude of growth seen in autism far outstripped those decreases. Also the number of new awardees classified as having other mental disorders who were also identified as having ASD increased, from 1,037 to 2,169, or 109.2%. Indeed, the researchers themselves noted that diagnostic substitution or expansion was unlikely to explain the increase.
The researchers also found that in 2015, adults with ASD were generally younger (mean age of 21 years) and had a higher percentage of males (79.1%), compared with recipients with intellectual disability and other mental disorder, which is consistent with trends seen in numerous autism prevalence studies.
As background, a claimant may quality for SSI benefits under 11 categories of mental impairment:
• Neurocognitive disorders
• Schizophrenia spectrum and other psychotic disorders
• Depressive, bipolar, and related disorders
• Intellectual disorder
• Anxiety and obsessive-compulsive disorders
• Somatic symptom and related disorders
• Personality and impulse-control disorders
• Autism spectrum disorder
• Neurodevelopmental disorders
• Eating disorders
• Trauma- and stressor-related disorders
Autism was added in 2001. An adult with documented autism and intellectual disability would be counted in both groups.
In sum, this paper adds more evidence of the increasing U.S. population with incapacitating autism in need of lifespan supports. While the numbers for 2015 should be alone to sound the alarm bells, surely 2020’s numbers will bring even more devastating news. Because SSI provides only a drop in the bucket compared to overall financial and programmatic needs to support disabled autistic adults, the overall implications of this growth in serious mental disability are dire.
Jill Escher is president of National Council on Severe Autism, and founder of Escher Fund for Autism, which promotes research in non-genetic inheritance in autism and other neurodevelopmental disorders. Based in the San Francisco Bay Area, she is the mother of two children with idiopathic nonverbal forms of autism.
Reference:
Anderson KA, Hemmeter J, Rast JE, Roux AM, Shattuck PT. Trends in Supplemental Security Income Payments to Adults With Autism [published online ahead of print, 2020 Apr 8]. Psychiatr Serv. 2020;appips201900265. doi:10.1176/appi.ps.201900265
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CDC Study Estimates 2.2% of U.S. Adults Have Autism — Don’t Believe a Word of It (2020)
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NeuroTribes: One Step Forward, Two Steps Back for Autism (2016)
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.