Health Care and Service Challenges for Autistic Adults: A Call to Action

Despite the lack of evidence that less externalizing autistics still struggle greatly into adulthood, policy does not support appropriate services for this segment of the population. In this session, we will explore the multifaceted costs of failing to serve less obviously disabled persons with autism. Social service options for individuals with less externally manifesting autism spectrum conditions are narrowly limited and result in ongoing insufficiency or denials of supports based largely on IQ results and one’s capacity to articulate language. However, a review of the literature on adult outcomes with this population reveals that IQ and speaking do not equate to the capacity to independently care for one’s self.

In this presentation, we will review research literature that discusses the barriers to positive outcomes for less externalizing individuals. We will review the features of less externalizing autism that are in direct conflict with obtaining supports. We will then explore how outcomes are impacted and the changes to policy and procedure that must happen to improve outcomes. Areas to be discussed are:

 

• Employment
• Gender risks
• Suicide
• Healthcare
• Maternal and reproductive healthcare
• Post-secondary access
• Rehabilitation services
• Diagnostic barriers

Ultimately, what this reflects is that current policy and misunderstanding of less externalizing autisms is in conflict with outcomes. We must shift thinking and understanding to embracing that autism is never easy and that while the challenges are uniquely different, they are no less impacting in regard to outcomes. Finally, rather than focusing on all the positive outcomes for a small percentage of individuals, in policy advocacy, we need to express these truths and demand enhanced services for transition to adulthood, post-secondary protocols and ongoing adult services.

Learning Objectives:

• Attendees recognize that "high functioning" doesn't mean improved outcomes.
• Attendees discover the research affirms that presumed competency is resulting in higher consequences.
• Discuss the various areas of difficulty that involve a failure to progress and actual regression in adult outcomes.

Track: Public Policy/Advocacy

Content Area: Current Research

Presenter:

Dena Gassner, Ph.D., student
Director Center for Understanding
Dena Gassner

Dena is the Director of the Center for Understanding, providing training and information worldwide. Boards for the Arc US, GRASP and the Autism Society benefit from her unique expertise. Wife, mother and non-traditional Ph.D. student at Adelphi University, she's living an authentic life including--not separate from--her own autistic identity.

<< Previous Session | Next Session >>