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Framing the Concept of Access Barriers in Autism Care

Written by Dr. Amanda Kelly

Autism rates continue to rise, with the CDC recently reporting 1 in 31 children are now diagnosed in the United States each year, up from 1 in 54 just ten years ago. Increased awareness and screening, improved diagnostic tools, and broader diagnostic criteria explain some of those increases.

While the nuances around factors contributing to this rise, including the distinction between changes in diagnostic rates and actual prevalence require careful study and consideration, autism is highly heritable with complex and muti-interactional genetic factors playing a major role. It is also clear that while genetics is key, there is some evidence that environmental variables may contribute to changes in genes that contribute to autism (Frazier et al., 2014).

Autistic individuals of all abilities will more than likely face barriers throughout their lifetime associated with access to appropriate diagnosis, therapy, education, work placement, medical care and mental health support. Autism is a broad spectrum, with vast and individual differences in thinking and learning, and in support needs. Individual differences range from those who will always require 24-hour care to those who live and work independently, and every other possible scenario in between.

Just like the autism spectrum itself, access barriers exist across a broad range of levels and types. Previous access barrier models such as the Health Care Access Barrier Model (HCAB, Carillo et al., 2011) provide a solid framework for conceptualization of access barriers by categorizing them into three main types: financial, structural and cognitive. Financial access barriers involve socioeconomic variables. Cognitive barriers refer to the ability to navigate systems, understand one’s own/family needs, and self-advocate. Structural barriers speak more to system level issues, such as physical, technological or geographical barriers, availability of providers, inconvenient or inaccessible systems that create difficulties, language barriers, etc. Importantly, within structural barriers lies a pervasive misunderstanding of autism at the social, medical, educational and workplace levels.

As recently as 2024, research has only begun to attempt to look at the impact of access barriers on quality of life in autism — specifically looking at quality of life outcomes that relate to wellbeing in physical, social, psychological, and work-related aspects of life, all of which are deeply connected. What that research is showing, at least preliminarily, is that barriers to care is emerging as a substantial predictor of poor quality of life outcomes (David et al., 2024).

Crucially, variables surrounding individual differences in autism presentation and care needs may also be directly related to individual differences in access barriers, with some individuals and families naturally facing a greater number of barriers than others, and with increasing depth and complexity than others.

If we don’t understand the access barriers that our community is facing, we can’t adequately respond. With the understanding that a family with a diagnosis of autism will face access barriers of some kind; consider those who face significant and repeated lack of care due to individual variables such as support needs, geographic location, availability of services, or pervasive societal misconceptions. For many years, Firefly Autism, the organization that I have the privilege of leading, has consistently supported individuals and families who previously struggled to find appropriate care until they discovered Firefly. These people often include learners with significant support needs, those facing geographical barriers, teens and adults, and individuals who are medically complex or fragile, among others. We seek to understand the broad autism community and through stakeholder engagement and partnerships, gaining valuable insights into the types and depths of access barriers faced.

As Firefly Autism thinks about the future, it is increasingly important to ensure a focus on our core purpose of empowering autistic individuals with access barriers to thrive. This will mean continuing to serve as a resource for education, information and service options. We are committed to focusing our resources on programs that support the learners and families who need us the most. By doing so, we strive to create environments where everyone has the opportunity to reach their full potential.

Read on Medium.com