Receiving an autism diagnosis for your child may bring an overwhelming amount of new information. Families quickly find themselves learning about therapeutic recommendations such as Applied Behavior Analysis (ABA), speech-language therapy, occupational therapy, and additional medical care. ABA, for example, is an evidence-based approach grounded in the core principles of behavior and learning that has been applied to support autistic individuals for decades (Baer et al., 1968; Cooper et al., 2020; Lovaas, 1987). Although families often receive extensive information about recommended services, they may receive less guidance on the financial responsibilities that accompany these supports.
Accessing recommended autism-related services can come with substantial financial costs. For example, an estimate from the U.S. Centers for Disease Control and Prevention (CDC) reported that intensive behavioral interventions may cost approximately $40,000 to $60,000 per year (CDC, 2014). However, insurance coverage for autism-related services has expanded considerably with changes to state and federal policies. Beginning in the early 2000s, states adopted laws requiring health plans to cover autism-related services, followed by additional federal protection under the Affordable Care Act (ACA) in 2010. In 2014, the Centers for Medicare & Medicaid Services (CMS) further expanded access by issuing guidance to states regarding coverage of medically necessary autism-related services for children enrolled in Medicaid. Despite these advances, families may still face significant differences in what their insurance covers and out-of-pocket expenses, highlighting the importance of understanding the financial considerations that follow an autism diagnosis.
The purpose of this article is to provide families with a practical, evidence-based introduction to the financial side of an autism diagnosis and resources to help make informed decisions as they determine the next steps for their child and family. To support this goal, the article will focus on four key areas of financial consideration:
- Insurance coverage
- Understanding that there is no single “cost” to autism
- Financial impacts and changes at work
- Financial steps and a checklist for families.
Insurance Coverage
Understanding your insurance coverage is an important first financial step following an autism diagnosis. However, having health-care coverage does not necessarily mean that all services are paid for in full. Specifically, deductibles, copayments, coinsurance, provider network status, and benefit limitations can all affect financial responsibility and out-of-pocket expenses. Because autism affects each child differently, the type of ABA services recommended (e.g., focused or comprehensive) and the intensity of treatment (e.g., a few hours to as many as 40 hours per week) can vary considerably and can also influence the overall cost. Before beginning services, consider contacting your insurance provider to request a detailed explanation of your child’s behavioral health and autism-related benefits. You may also want to consider asking whether a case manager is available to help navigate the process of accessing care. Specifically, case managers may be able to assist with referrals, waitlists, and contacting providers on your behalf. Understanding what is covered, what is required prior to an authorization, which therapy providers are in-network, and what you may be expected to pay can help you anticipate and plan expenses and make informed decisions.
Some helpful questions to ask include:
- Is ABA covered under my child’s current plan?
- What diagnosis, referral, or documentation is needed for coverage?
- How often will my child need a new authorization?
- What coverage is available if we choose an out-of-network provider?
- What will we be expected to pay toward our deductible, copays, or coinsurance?
- What other services, such as speech therapy, occupational therapy (OT), or physical therapy (PT), are included in my child’s benefits?
- If ABA services are denied or the approved hours are reduced, how can we appeal the decision, and how long do we have to file an appeal?
Helpful tip: When speaking with your insurance provider, write down the representative’s name, date of the call, and any reference or confirmation number provided. Families should also consider requesting a copy of your child’s benefits and keeping it with authorization letters, explanation of benefits, and other insurance documents.
No Single “Cost” to Autism
Although estimates of the broader “costs of autism” are available (e.g., insurance-related expenses such as copayments or deductibles), there is no single dollar amount that can accurately represent what every family may experience. Autism is a spectrum, and each child’s needs, strengths, and levels of support vary and change throughout their lifespan. As a result, the expenses associated with those services also vary.
Costs may extend beyond ABA and other therapeutic services. For example, families may encounter expenses related to transportation that include gas, mileage, tolls, or parking for frequent appointments and sessions. Some children may require communication devices such as augmentative and alternative communication (AAC) devices, which may include costs for the device as well as repairs or replacements. Additional expenses may include sensory or adaptive items such as specialized eating utensils, noise-cancelling headphones, or home safety equipment. Families may want to contact their insurance providers and ask whether these items qualify as durable medical equipment (DME), as DME may be covered under their insurance plan. AAC devices may also be eligible for coverage through speech-language benefits. In some cases, families may seek providers that are out-of-network for specialized evaluation services such as feeding or neurology. These examples highlight how the financial impact of autism extends beyond the cost of any single therapy or service.
Financial Impact of Changes at Work
The financial impact of an autism diagnosis may extend beyond direct expenses, as families may require changes to work schedules, employment status, or income to accommodate their child’s needs. Research suggests that parents of autistic children may work fewer hours and earn less than parents of children without autism (Cidav et al., 2012; Kinnear et al., 2016). One study found that 55% of parents of an autistic child reported reducing their work hours or leaving a job altogether (Lynch et al., 2023). These findings and changes to employment status may be related, in part, to the time required to attend evaluations, appointments, school meetings, or therapy sessions that often occur during “traditional” work hours. Depending on the frequency of these commitments, caregivers may be required to use time off, request flexibility in their work schedule, or in some cases, reduce their work hours (i.e., work part time). In some cases, reduction of work hours (i.e., working part time) can also change an employee’s access to health insurance, paid leave, or retirement benefits. These broader financial considerations are important to keep in mind when evaluating the overall financial impact on the family.
Financial Steps and Checklist for Families
Following an autism diagnosis does not mean having every possible future expense figured out at once. Instead, families should consider where expenses may arise and understand the financial costs associated with supporting their child. A helpful place to start is understanding your current financial situation and becoming familiar with financial resources and benefits that could prepare or even offset some of these expenses. In addition to assessing employer-sponsored benefits, families may also consider contacting their state agency responsible for developmental disability services that can help provide information about available programs such as Medicaid, Supplemental Security Income (SSI), or Medicaid waiver programs. Financial needs and available resources may change as your child grows and their needs evolve. The goal is not to anticipate every expense, but to help families understand the types of expenses they may encounter and recognize resources that may be available.
Financial Considerations for Families – A Checklist
- Review your insurance benefits and coverage requirements
- Ask providers about anticipated out-of-pocket costs before beginning services
- Learn which services and support may be available through your child’s school or provider
- Keep records of medical, therapy, transportation, childcare, and other relevant expenses
- Explore public benefits and community resources for which your family may qualify
- Consult with your local school system to learn about educational support services (e.g., Individuals with Disabilities Education Act)
- Review workplace leave, benefits, and flexible-scheduling options that may be available to you
- When appropriate, consult professionals familiar with disability benefits, tax considerations, and special needs financial planning.
Financial needs and available resources will continuously change as all family needs are different. The goal is to help families navigate the financial landscape of an autism diagnosis by asking questions, gathering information, and recognizing additional resources that are available.
Ashley Romero Diaz, PhD, BCBA-D, is Director of Research at ABA Centers of America. To contact the author, email [email protected].
References
Baer, D. M., Wolf, M. M., & Risley, T. R. (1968). Some current dimensions of applied behavior analysis. Journal of Applied Behavior Analysis, 1(1), 91–97. https://doi.org/10.1901/jaba.1968.1-91
Centers for Disease Control and Prevention. (2014). Community report from the Autism and Developmental Disabilities Monitoring (ADDM) Network. U.S. Department of Health and Human Services.
Cidav, Z., Marcus, S. C., & Mandell, D. S. (2012). Implications of childhood autism for parental employment and earnings. Pediatrics, 129(4), 617–623. https://doi.org/10.1542/peds.2011-2700
Cooper, J. O., Heron, T. E., & Heward, W. L. (2020). Applied behavior analysis (3rd ed.). Pearson.
Howard, J. S., Sparkman, C. R., Cohen, H. G., Green, G., & Stanislaw, H. (2005). A comparison of intensive behavior analytic and eclectic treatments for young children with autism. Research in Developmental Disabilities, 26(4), 359–383. https://doi.org/10.1016/j.ridd.2004.09.005
Kinnear, S. H., Link, B. G., Ballan, M. S., & Fischbach, R. L. (2016). Understanding the experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ lives. Journal of Autism and Developmental Disorders, 46(3), 942–953. https://doi.org/10.1007/s10803-015-2637-9
Lynch, F. L., Bulkley, J. E., Varga, A., Crawford, P., Croen, L. A., Daida, Y. G., Fombonne, E., Hatch, B., Massolo, M., & Dickerson, J. F. (2023). The impact of autism spectrum disorder on parent employment: Results from the r-Kids study. Autism Research, 16(3), 642–652. https://doi.org/10.1002/aur.2882
Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55(1), 3–9. https://doi.org/10.1037/0022-006X.55.1.3
