In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.
From the A.J. Drexel Autism Institute:
In the latest National Autism Indicators Report, researchers from Drexel University’s A.J. Drexel Autism Institute examined surveys of family members of autistic adults who use Developmental Disability services, and found needs for additional supports like respite care and assistance to plan for crisis and emergencies, especially among families whose adult lived with them....
Lead author Anne Roux, a research scientist at the Autism Institute, and her team looked at data from several thousand families across states that participated in the Adult Family Survey and the Family/Guardian Survey conducted in 2018-2019 as part of the National Core Indicators – a collaborative effort to collect data to help improve the quality of states’ Developmental Disability services.
From the report:
Among all families:
• Autistic adults who received DD services were more likely to have co-occurring intellectual disability (ID). About 60% of adults on the spectrum who lived with family had ID, and 75% of those who did not live with family. This means autistic adults who received DD services were more than twice as likely to have cooccurring ID as the overall population of people on the spectrum – about one-third of whom have ID.
• High levels of co-occurring health and mental health conditions. Like the general population of adults on the spectrum, those who received DD services experienced higher rates of many health conditions and mood/psychiatric disorders which can contribute to earlier mortality and poorer quality of life.
• There is a need for more employment supports. Although DD services are a key source of support for employment, only about one-third of adults on the autism spectrum had paid daytime activities. Families also reported that about one in three adults did not have enough supports to be able to work or volunteer in the community.
• Families report inadequate planning for emergencies. About four in 10 families did not discuss a plan for handling crises and emergencies at their last person-centered planning meeting. Thus, many families may have been unprepared for managing emergencies as they headed into the COVID-19 pandemic.
Families with an autistic adult who lived with them were more likely to report:
• Financial hardship. 22% of families reported an income of $25,000 or less, signaling possible financial burden. But only 37% of all families with an adult living at home received payment for the care they provided
• Need for additional support. 27% of families felt they didn’t have enough supports and services for themselves. Over half of these families needed respite services so they could take a break from caregiving. And 40% said they needed more information about public benefits the adult might qualify for.
• Need for information and training. 70% of these families managed the staff who provided support for the adult in their home. 30% said that the information they were given about services and supports was seldom or never easy to understand.
Families whose autistic adult did not live with them were more likely to report:
• Less empowerment. Only 45% of these families said they usually or always had a choice of the staff who supported their autistic adult. And 22% felt they could not change their service coordinator.
• Safety concerns. 10% of families with an autistic adult who did not live with family said they reported abuse or neglect within the past year.
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CHARACTERISTICS OF AUTISTIC ADULTS
Among those who lived with family:
• More than six in every 10 adults with autism (64%) also had intellectual disability –almost double the rate found in the overall population of people on the autism spectrum.
• Most autistic adults who lived with family were male (73%) and non-Hispanic white (73%). A higher percentage were non-Hispanic Black (15%) compared to the general population (13%), but a lower percentage were Hispanic(6%), compared to 19% in the general population.
• 24% of autistic adults needed extensive supports for managing distressed behavior, compared to 10% of adults with other types of disabilities.
• Nearly 80% of families reported the autistic adult had extensive needs for support with daily activities like scheduling, managing money and shopping.
• While many families reported their loved one had activities in the community, only 33% had any type of paid daytime activities, and nearly 40% were doing some type of facility-based work in settings that do not include people without disabilities. Autistic adults who were Hispanic were less likely to participate in community-based activities compared to non-Hispanic White adults.
Among those who do not live with family:
• More than seven in every 10 adults with autism also had intellectual disability – more than double the rate found in the overall population of people on the autism spectrum.
• Autistic adults who did not live with family were primarily male (78%) and were more likely to be non-Hispanic White (79%) than the U.S. general population. Approximately 12% were non-Hispanic Black - roughly equivalent to the general population. A lower percentage were Hispanic (3%), compared to 19% in the general population.
• 42% of autistic adults needed extensive supports for managing distressed behavior, compared to 24% of adults with other types of disabilities.
• 88% of families reported the autistic adult had extensive needs for support with daily activities like scheduling, managing money and shopping.
• While many families reported their loved one participated in activities in the community, only 30% had any type of paid daytime activities, and nearly 60% were doing some type of facility-based work in settings that do not include people without disabilities. Autistic adults who were Hispanic were less likely to have any type of paid work compared to those who were non-Hispanic White, Black, or Other/Mixed race.
• Nearly 70% of adults with autism who did not live with family members were in group home or agency-operated apartment settings. Nearly 12% were in specialized facilities for people with I/DDs, and 9% lived in independent homes or apartments.
CHARACTERISTICS OF FAMILY MEMBERS AND HOUSEHOLDS
Among families whose autistic adult lived with them:
• 91% of survey respondents were parents, and 5% were grandparents.
• Nearly half (48%) of family members had a college education, and 61% were between 55-74 years old at the time of the survey.
• 22% of families reported annual household income of $25,000 or less. Approximately 37% received pay for providing supports for their loved one.
Among families whose autistic adult did not live with them:
• 75% of survey respondents were parents, and 9% were siblings.
• 68% of family members were between 55-74 years old at the time of the survey, and 15% were age 75 or older. Over half (55%) had a college education or higher.
• 20% of families reported annual household income of $25,000 or less.
