Drexel University Study on adult outcomes

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We used data from the National Core Indicators - Adult Consumer Survey (ACS) to study the services experiences and outcomes of adults with autism spectrum disorder (ASD) who used state Developmental Disability (DD) services during the 2014/2015 survey cycle. We summarize key issues and ndings. Detailed information and citations to related research can be found in the chapters that follow in this report.
Characteristics
A total of 3,520 adults with ASD who were ages 18-64 and not in public school participated in the 2014-2015 ACS survey. If an adult with ASD did not want to respond to the survey or was unable to respond, a proxy who knew them well could respond to a portion of the survey on their behalf. We note that the group of people with ASD who received DD services were more likely to also have an intellectual disability (ID) compared to the overall population of people with autism. erefore, the ndings in this report represent people with a greater level of challenges and impairments than all individuals with ASD.
Our key ndings:
• e average age of adults with ASD who participated in the survey was 34 years - eight years younger than DD service users who did not have ASD.
• Half (51%) of middle-aged adults (45-64 years) with ASD had severe or profound intellectual disability (ID), compared to only 16% of young adults (18-24 years) with ASD.
• In some states all adults with ASD also had ID, while in other states approximately half had ID - likely re ecting di erences in state policy about who quali es for DD services.
• Younger adults with ASD were more likely to use spoken language as their primary means of expression than middle-aged adults with ASD.

We already know that youth with ASD lose access to the services that they may have had through special education once they leave high school. Services and programs available through state and local DD agencies vary widely. Compared to the overall ASD population, those who qualify for state DD services as adults tend to have higher levels of cognitive and functional impairments. ey may also have di erent needs than their peers with other types of DDs.
Our key ndings:
• Of the services that the ACS asked about, the most common services adults with ASD received were health care, dental care, and transportation. About half of adults with ASD received information about bene ts or insurance (54%), and services for social relationships or meeting people (49%).
• Almost half (49%) of adults with ASD used six or more services funded by a state DD agency. ose with ASD used the same types of DD services, and at the same rate, as other DD service users who did not have ASD.
• Half (51%) of adults with ASD who lived with parents or relatives received respite care services. Younger participants with ASD (18-24 years) were more likely to receive respite care than middle-aged individuals (45- 64 years).
• Overall, 25% of ACS participants with ASD reported that they did not receive all of the services they needed.

We already know that rates of co-occurring mental health conditions are higher in people with ASD compared to the general population, particularly in regard to anxiety, depression, and schizophrenia. e challenges posed by these additional conditions can make it more di cult to work, live independently, and participate in the community. Medications are often used to address co-occurring mental health conditions.


• Over half (54%) of adults with ASD had at least one mental health condition (including anxiety, mood
disorder, psychotic disorder, and/or other mental illness) in addition to ASD.
• Almost half (46%) of adults with ASD had behavioral challenges including disruptive, self-injurious, and/or destructive behaviors.
• Six in 10 adults with ASD (64%) took medication for mood disorders, anxiety and/or psychotic disorder, and/or behavioral challenges. is rate was much higher than among other DD service users.
• 44% of adults with ASD took medications for behavioral challenges - almost twice the rate of other DD service users.

Employment and Other Day Activities
Finding and keeping a job is hard for many people with ASD. Navigating the social dynamics of the workplace, coping with sensory overload, organizing and completing tasks, and communicating with coworkers may be challenging. State DD services are a key source of public funding for the long-term supports and services that people with ASD may need to participate in work and other types of day activities.
Our key ndings:
• Paid, community-based employment was the least common outcome for adults with autism spectrum disorder (ASD). Only 14% held a job for pay in the community. About one-fourth of adults with ASD had community employment as a goal in their service plan.
• Over half (54%) participated in an unpaid activity in a facility (where most other workers had disabilities).
• One-fourth (27%) had no work or day activities, in either community-based or facility-based settings, in the two weeks prior to the ACS.


Where people with intellectual or developmental disabilities (I/DD) tend to live has changed dramatically over the last 50 years. More people with I/DD now live in the community in a home or a group home. ey may receive assistance from direct support sta in their home, but few live in large institutional settings that are directly operated by states.
Our key findings:
• Almost half (49%) of adults with ASD lived in the home of a parent or relative. Many of those who lived with their families had been there for more than 5 years.
• Nearly four in ten adults with ASD who lived with parents or relatives received no paid in-home supports. Of these, 37% indicated they needed some type of supports or services.
• One-fourth (27%) lived in group homes with up to 15 people who also had disabilities. It was uncommon for adults with ASD to live in institutions.

We know that adults with ASD report a strong desire for acceptance within their communities at large, paired with opportunities to connect with other people who share their common interests. ere is no single level or type of social and community inclusion that is the right t for all adults with ASD. Federal laws and Supreme Court decisions a rm the belief that people should be able to participate in their communities and have meaningful relationships and friendships to the extent that they choose and in the ways that they prefer.

Most adults with ASD (over 80%) got out at least monthly to shop, eat out, run errands, or for entertainment. Almost half had been on vacation during the last year.
• Most self-respondents with ASD (84%) said they always had a way to get to where they wanted to go - usually getting a ride from family or friends.
• Less than half (43%) of adults chose their daily schedule on their own in regard to when they woke up, ate, or went to sleep; 40% could choose how to spend their money on their own.
• Three-fourths of self-respondents (72%) said they had a friend who was not a family member or staff . However, 41% also reported feeling lonely sometimes.


This final chapter explores the rights of adults with ASD who participated in the ACS and their experiences with independence.

ACS with ASD had a limited or full legal (court-appointed) guardian.
• Almost three quarters (74%) of adults with ASD could be alone with guests or visitors in their home.