Autistic Delivered Peer Support
A Promising Model for Improving the Quality of Life for Autistic Adults
Background
An estimated 5 million autistic adults live in the U.S., making up approximately 2.2% of the adult population. Autism spectrum disorder is a
life-long condition characterized by differences in social communication and interaction, and restricted and repetitive behavior. Autism is associated with higher rates of co-occurring mental, physical, and developmental health conditions (e.g. intellectual disability). Autistic individuals often have complex needs, making access to high-quality services and supports crucial for this population.
Autistic adults in the U.S. also consistently report higher rates of unmet healthcare and support needs and poorer health in comparison to non-autistic adults. Autistic individuals report the following challenges that make it more difficult to have good health:
- Lack of healthcare providers who are knowledgeable about autism
- Issues navigating the complex and confusing healthcare system
- Problems and/or anxiety when communicating with providers
- Sensory sensitivities that can make healthcare settings uncomfortable and overwhelming
- Being misunderstood by service providers
Peer support is a promising and effective solution for helping autistic adults navigate health care and overcome health barriers unique to the autistic experience.
What is Peer Support?
Peer support is an intervention that helps people with disabilities handle the challenges of accessing healthcare. Individuals with shared experiences provide social and emotional support to their peers. Peer supporters serve as guides, advocates, and mentors to individuals going through similar situations or experiences. Peer support is a good complement to formal or professional support services because it offers practical, emotional, and social supports.
Key Points
- Autistic adults experience higher unmet social and health needs in comparison to non-autistic
- There are limited options for evidence- based services and
- Peer support is a promising avenue for better meeting the needs of autistic adults because of its emphasis on shared lived
- Autistic-delivered peer support shows promise in improving outcomes for autistic
Benefits of Peer Support
Peer supporters and peers both receive positive emotional, mental, and physical health benefits from peer support services. Peer support improves overall health and quality of life, increases engagement in other services and supports, decreases hospitalizations, and reduces overall service costs. Peer support is unique, flexible, and tailored to the needs, wants, and goals of the individual receiving
the support. It is particularly helpful in reaching and meeting the needs of underserved populations, such as autistic adults.
The Issues
Traditionally, non-autistic people deliver support services to autistic individuals.
However, many service providers lack autism- specific knowledge and training. Also, the relationship between a service provider and a client is like a boss and an employee, with the service provider having more authority. In this model, autistic individuals need to constantly advocate for their health needs but are often misunderstood in the process. This can lead
to misdiagnosis of health issues, more service utilization, as well as lower-quality care overall.
In the U.S., 80% of state Medicaid programs cover peer support services in the mental health field. However, as far as we know, none of these peer support services are designed specifically for autistic individuals.
*This means that people who get HCBS cannot be forced to live in an institution.
Peer Support is a Solution for Improving Health Care for Autistic Adults
Peer support that is delivered by an autistic person to another autistic person presents a promising method to improve the quality of healthcare and support services that autistic adults receive. The number of autistic adults in the U.S. is increasing. We need to find better and more cost-effective ways of meeting their needs. Peer support programs can help autistic people find ways to address these unmet needs.
Autistic people report feeling more understood, connected, and comfortable with other autistic individuals in comparison to non-autistic individuals. Autistic people tend to hold fewer stigmatizing beliefs about autism and are more accepting and understanding of autistic traits, such as repetitive body movements, sensory sensitivities, or differences in communication styles. Therefore, having autistic individuals provide peer support to their autistic peers could be a way to overcome the gap in understanding and improve the quality of care provided.
Preliminary studies have demonstrated that peer support services are feasible for autistic youth and adults. After 3-months of working with a peer supporter, autistic individuals say they have fewer unmet needs and are more engaged in mental health services. If peer support services are implemented in more communities, they could offer more accessible supports to autistic individuals who need assistance accessing health care.
Policy Recommendations
States should expand what services are covered under Medicaid to include peer support for autistic adults .
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- While 80% of states cover peer support services through Medicaid, the services are not designed for autistic people.
- States should continue to broaden the range of peer support services covered by Medicaid, including peer support designed specifically for autistic people.
States should add trained autistic peer supporters to the list of people who can be paid to provide peer support services through Medicaid and Home and Community-based program waivers.
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- Due to the current setup of peer support services nationwide, paid peer supporters typically have personal experiences with mental health issues or substance abuse.
- States should broaden their peer support programs to cater to autistic individuals and hire autistic people as paid peer supporters.