With our focus on education and advocacy, we made the following policy recommendations for the 2016 Strategic Plan. PWDF based our recommendations on our 16-year history of providing legal representation, including for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) issues for people with psychiatric and/or developmental disabilities.

In our research, we have identified disparities along gender, ethnicity and income being areas of concern when it comes to diagnosis, treatment, services (including for employment, housing, health care and education), and long term care for adults with autism. Through our research and our 16 years of providing legal services to clients with autism spectrum disorder (ASD), we are very concerned about those who were not diagnosed or were misdiagnosed and institutionalized during the years before autism was more commonly discussed and diagnosed. Accurate diagnosis, resources, services, and treatment are critical for adults with autism to lead their most fulfilling lives through independence and community integration.

For these reasons, we particularly recommend that the 2016 Strategic Plan make efforts to address the needs of adults across the spectrum who have not been diagnosed or who have been misdiagnosed.[³]  We would like to see increased effort to reach the objectives of Question 6, “What does the future hold, especially for adults?” particularly as it relates to identifying people who are eligible for services but not receiving them either because they were mis-diagnosed or were never diagnosed.  We also would like to see more research in the development of diagnostics for adults and research into the effect of late-life diagnosis.

As noted above, we suggest that more research be conducted to identify how ASD manifests in girls and women so that females are not denied treatment and services because they are not diagnosed or are misdiagnosed, which could be the case if ASD manifests differently in females than in males.[⁴] 

We note that Advancing Futures for Adults with Autism (AFAA) sees three specialized zones for concern for adult autism populations, and we agree with these areas of focus in order to promote independent and community living. Primary of these concerns is housing and residential support. AFAA reports that “500,000 children with an autism spectrum disorder will become adults over the next 10 years – each with his/her own unique needs. Current public housing options are extremely limited due to deep-rooted constraints in financing.”[⁵] Stable housing is a key criteria for maintaining other human needs, including employment, health care, and community living.

Another area of concern includes employment and workplace integration. AFAA reports “When a person with autism exits the educational system we should be measuring the rate at which jobs are obtained and employment is sustained. Right now it is believed that while the vast majority of adults with autism want the opportunity to work, 80-90% of them are currently unemployed.”[⁶] People With Disabilities Foundation provides specific training[⁷] and resources[⁸] in the realm of workplace accommodation. We believe that the confidence and independence that is garnered with employment opens a large scope of possibilities for individuals with autism.

Lastly, AFAA sees community integration as a key element for individuals with autism to enjoy and benefit from fulfilling lives. “According to Peter Gerhardt, PhD, ‘The problem is that society does have a very negative perception. This is a truly significant barrier to lives of inclusion and dignity for individuals with autism.’ Increased public awareness is inextricably linked to the success of persons who have an autism spectrum disorder. Much has been done to educate the public about the effects of autism on children. However, as the average age of these children increases, so too, must the focus of their needs. The broader the understanding of the needs of adults with autism, the brighter their futures.”[⁹] We recommend that the 2016 plan include increased focus on identifying the needs of adults and older adults with autism of all ages. Of particular interest is how to provide individualized services for seniors, as the current models for neurotypical senior services may not be optimal for all people across the spectrum.

PWDF continues to extend its advocacy in the diverse fields that lead to community integration, including public benefits, employment, housing, and education. PWDF urges the IACC to fully address the complex issues facing adults with autism as the IACC shapes the 2016 Strategic Plan. We reiterate our recommendation that the 2016 Strategic Plan address a broad and diverse population of people across the spectrum so that many more people will be able to achieve equal opportunities in all aspects of life.