By Mary Kay Rizzolo, CQL President & CEO
Data collected through CQL’s Personal Outcome Measures® tells us that those with autism are less likely to choose services, choose where they work, choose where they live, or choose who they live with, in comparison to other diagnoses of developmental disability. National Autism Awareness Month is the perfect time to better understand these lapses in quality of life for people with autism, raise awareness, explore where improvements can be made, and encourage those connected to the human services system to become change agents.
As we wrap up National Autism Awareness Month in April, CQL is sharing some outcomes-based perspective on autism. This article provides a brief overview of Autism Spectrum Disorder (ASD), shares data about the presence of outcomes in the lives of people with autism, and concludes with an empowering call to action, from Tonia Ferguson, Vice President of Public Policy/Advocacy for Autism Society.
What Is Autism?
By Ann Eller, CQL Quality Enhancement Specialist
Autism Spectrum Disorder (ASD) is a developmental disability that is typically diagnosed during childhood. The condition affects people in a range of ways, but usually affects language, motor mannerisms, lack of interest in relationships, persistent fixation on objects, and lack of spontaneous play. Diagnostic criteria in the DSM-V includes “persistent deficits in social communication and social interaction across multiple contexts,” and “restricted, repetitive patterns of behavior, interests, or activities.” The condition usually known as Asperger’s Syndrome was included as a separate diagnosis in the DSM-IV, but is now absorbed into the Autism Spectrum Disorder diagnosis in the DSM-V. In addition, there is a new diagnosis called Social Communication Disorder, which is an alternative diagnosis for someone showing the social communication deficits but who does not have the language and cognitive delays usually associated with autism.
In 2014, the Centers for Disease Control and Prevention (CDC) concluded that the prevalence of autism had risen to one in every 68 births in the United States. This is compared to the 2004 rate of one in every 125 births. The reason for this spike in the rate is unknown but might be attributed to a rise in identifying and diagnosing the symptoms more often. Autism Spectrum Disorder occurs across all racial and ethnic groups but is about 4.5 times more common in boys than in girls, according to the CDC.
As far as causes of ASD, the Autism Society says “There is no known single cause for autism spectrum disorder, but it is generally accepted that it is caused by abnormalities in brain structure or function. Brain scans show differences in the shape and structure of the brain in children with autism compared to neurotypical children. Researchers do not know the exact cause of autism but are investigating several theories, including the links among heredity, genetics, and medical problems.”
People who have autism have the same range of needs and desires as other people, and may need supports to fulfill those needs and desires. These might include occupational and speech therapy and augmentative communication devices; supervision and education regarding safety; advocacy and assistance to obtain inclusive housing, education and work opportunities; prevention of abuse and neglect including bullying; specific strategies for structuring daily activities and transition times and for developing meaningful relationships; and other services.
Research shows that early intervention can improve a child’s development. There are also no medications that can treat the primary disability, but there are medications that help some people function better, through managing symptoms, emotional state, or ability to focus. With individualized supports that respect the unique needs and skills of each person, people with autism do live healthy, happy, and productive lives.
Insight Through Outcomes Data
By Carli Friedman, CQL Director of Research
147 people with autism spectrum disorder (ASD) participated in Personal Outcome Measures® interviews between 2015 and 2016. The majority of people with ASD in our sample live in provider owned or operated homes (48%), family homes (26%), or their own homes (13%), with fewer people living in other settings. Most people with ASD in our sample receive 24/7 around-the-clock daily support (67%) or 6 to 12 hours/day (16%). The people with ASD in our sample often have full/plenary (46%) or assisted guardianship (43%) compared to independent decision making (11%).
Outcomes for People with ASD
People with ASD most frequently had the following outcomes present: are safe; best possible health; use environments; and free from abuse and neglect. Meanwhile, the following outcomes were least frequently present for people with ASD in our sample: choose services; choose where and with whom to live; choose where to work; and perform social roles.
People with ASD vs. Other Disabilities
There were a number of areas where people with ASD achieved outcomes less frequently than people with other disabilities — indicating more supports may be needed in these areas for people with ASD. Compared to people with other disabilities in our database, the outcomes with the greatest disparities for people with ASD were:
- Choose services (-6.3%)
- Realize personal goals (-5.6%)
- Perform social goals (-5.4%)
- Choose where to work (-3.0%)
- Have friends (-2.7%)
- Choose personal goals (-2.5%)
- Participate in community life (-1.7%)
People with ASD are also less likely than people with other disabilities to receive organizational supports in the following areas:
- Perform social roles (-4.4%)
- Choose services (-3.5%)
Transforming Awareness Into Action and Advocacy
By Tonia Ferguson, Vice President of Public Policy/Advocacy, Autism Society
As referenced above, according to our Personal Outcome Measures® data collected between 2015 and 2016, most people with ASD were found to have positive outcomes including: being safe; having the best possible health; and free from abuse and neglect. But, there were a number of areas where people with ASD experienced fewer positive outcomes compared to people with other disabilities such as: choose their own services; choose where and with whom to live; choose where they work; and perform social roles.
Awareness is not enough, and more supports and services are needed for people with ASD to be successful in their community. One thing is certain; advocacy is the core component for the advancement of people with disabilities. Nearly one in five people live with a disability in the United States, and each person connected to those people, as well as the individuals themselves, are critical to effective advocacy. Often, public services and supports are not available and accessible to all who need them and different policies govern across state lines. There has to be a service delivery system where measurable outcomes demonstrate marked improvements over time based on a person’s unique needs and preferences. A philosophy of empowerment has to guide everything someone with a disability does, and being on the autism spectrum is no different.
For instance, prior to the landmark Americans with Disabilities Act passage in 1990, many people living with ASD and other disabilities had few opportunities to access gainful employment, quality education, or community inclusion. Awareness and action created more legal protections for people with disabilities to make significant inroads in the job market. From the success of the ADA to the Workforce Innovation and Opportunity Act (WIOA) and subsequent legislation, advocates’ actions yielded more victories for people with disabilities to march toward achieving the highest quality of life. Employment First States have ultimately challenged the status quo and demonstrated how no matter the obstacle, when one presumes competence, the sky is the limit. Removing barriers to success and promoting access to supported employment, customized employment, and other services and supports that will enhance opportunities for competitive employment is paramount.
Today the fight continues for improvements in laws and policies that change lives and ensure equal treatment for all people, regardless of disability. Issues such as funding for services and supports, Medicaid, health care options, excessive waitlists, and high unemployment rates still plague the disability community. Nonetheless, through advocacy, we continue to see outcomes and opportunities that generate solutions and enact system change.
Don’t give up the fight! Join us as we celebrate National Autism Awareness Month and come together knowing that awareness can lead to better outcomes, action, and advocacy for everyone living with autism.
Autism, Outcomes, And A Call To Action