By Wei Song

One of the most frequently asked questions by autistic people is, “What can I expect in the future?” This complex question has inspired many researchers over the past two decades to investigate quality of life and social outcomes of autistic individuals. My own research focuses on how autistic adults participate in their communities, their access to services, and things that affect their participation and access.

Autistic adults participate in their community half as often as adults in the general population and are much less satisfied with their participation in a broad range of areas. Participation rates may be low because autistic individuals are often systemically excluded from opportunities, which are open to others, to engage in various social contexts including social and intimate relationships and participation in their communities because of their autistic traits and other conditions.

Inclusion and participation for people with disabilities is an established right (United Nations, 2006) and a policy goal. Policy shifts toward community-based services and supports aim to ensure full participation in community life for individuals with all disabilities, including autistic individuals. The Americans with Disabilities Act (ADA), Olmstead vs. LC (1999) Supreme Court decision, and Home and Community-Based Services (HCBS) Settings Final Rule all emphasize meaningful integration of autistic adults, and those with other disabilities, in society.

Meaningful integration includes ensuring dignity and respect plus freedom from coercion and restraint; optimizing autonomy and independence; and making sure people have choices of services based on their needs. Unfortunately, the policies that have been put in place to increase community integration have made little progress.

There are several reasons that community participation has been slow to improve:

  • First, we aren’t sure what supports should be recommended to aid autistic adults to participate in their communities. Most research has focused on impairments among people with autism but overlooks the role of the environment. Things like having safe and accessible transportation, and having places to go where people feel accepted for who they are, may be even more important goals for change. We need supports and policies that will help us change the environment to support community participation.
  • Second, it is difficult to find one solution that meets the needs of autism community. Each autistic individual has a unique life experience with different challenges and strengths. As more people have been diagnosed with autism spectrum disorder, the “spectrum” of different types of needs has also increased. Autistic people can and should have a voice in suggesting solutions that would make communities more accepting and inclusive. However, there has been little to no autistic input or involvement in most policies and practices.

Overall, for policy to improve the lives of autistic people and the autism community, it is not sufficient to focus only on interventions that try to improve how individual people function. Instead, a focus on the environmental factors that play a role in facilitating or limiting community integration is needed.

What might help autistic people participate in their communities? Informal social supports (such as from family and friends), availability of transportation, access to health and social care, giving people more ability to make their own decisions, and improving the quality of the environment (such as autism awareness and acceptance, accessibility of community resources) are a few examples. We need environments that support people’s individual needs and strengths.

Who can best tell us what the policy priorities should be? Autistic people! Policies must be guided by the priorities by the autistic community, designed with their input, and implemented with their support. This is a key advocacy effort of groups like ASAN. Effective policy cannot be made without the voices of those the policy will affect. Policymakers must engage autistic people in policy decisions related to their community living, learn from their expert knowledge of autism, and respect their specific requests. This is how we can start to build autism-inclusive communities.