Frontline Initiative Autism Spectrum Disorder

Here's the latest! Research on services and supports for adults with ASD


Annie Johnson Sirek, MSW is delighted to serve as Editor of FI

One of the main ways that adults with ASD receive direct support is through their states’ intellectual and developmental disabilities (I/ DD) service system. This system includes Home and CommunityBased Services (HCBS) Medicaid waiver programs. This is often called ‘the waiver’ for short. The waiver is a primary source of funding services for people with I/DD and their families.

Adults with ASD often face barriers when trying to access services they need. Many are not eligible for the waiver and I/DD services. This can happen when a person does not have a co-occurring intellectual disability diagnosis. Or the person may have sufficient skills for performing activities of daily living. These are two common ways that states determine whether a person can receive services.

What can help adults with ASD to access the services and supports they need?

Policymakers have worked to expand access to services for people with ASD. Some states have changed the eligibility criteria for receiving services. The policies label ASD as a ‘related condition’. This implies that people with ASD may receive services because they face similar challenges or need similar supports as people with intellectual disabilities.

A few states have taken an even more promising approach and have started waiver programs specifically designed for people with ASD. The new waiver provides more specialized services and supports based on a person’s unique experience with ASD. Autism waivers for children are an important growing trend, but these waivers are less common for adults.

What is important to know about the status of these services in my state?

Inclusive policies and targeted programs matter! States that have affirming HCBS policies for people with ASD make a difference. Research shows that those states are much more likely to provide services to residents with ASD. Without having these policies in place, a state may be making it more difficult for residents with ASD to receive needed supports.

You can help by contacting your local and state government representatives and policymakers in state human service departments. Tell them about your work. Discuss effective supports that adults with ASD need access to.

What else does the research tell us?

There is a large proportion of young adults with ASD who currently use state I/DD services. Our systems must prepare for increasing numbers of adults with ASD. States need to develop plans to serve this population and their families across the lifespan.

It’s also important to find effective ways to support people with ASD based on various levels Knowledge translation of intellectual ability. There are a significant number of people with ASD who have either a profound intellectual disability or no intellectual disability. This calls for state I/DD services to be specially designed to support these outlier groups.

Research also tells us that there are very few adults with ASD who use communication aids or devices. In part, this may be due to the many barriers around obtaining funding for devices and related repairs. This is troubling because communication can be particularly challenging for this population.

It’s important for Direct Support Professionals (DSPs) to advocate for the use of effective communication technologies whenever necessary. Remember that communication is a human right!

  • Hewitt, A. S., Sirek, A. J., Hall-Lande, J., Moseley, C., Taub, S., Engler, J., & Bershadsky, J. (2011). Characteristics of adults with autism spectrum disorder who use adult developmental disability services: Results from 25 US states. Research in Autism Spectrum Disorders, 6(2), 741–751.