A study conducted in 2020 found that “the average per capita cost of ASD (Autism Spectrum Disorder) is $3,566,881” (The lifetime social cost of autism: 1990-2029). Investopedia performed a research study of their own and found that raising a child without ASD in the United States in 2022 from the time they are born to the age of 18 and not including higher education costs around $272,049.

What contributes to this drastic difference? ASD brings additional, unexpected costs to families. These expenses range from therapies, doctors’ appointments, special education, care, and much more. Some families can help their children with ASD transition on their own to live independently; this offsets costs as they are making their own money, living by themselves, and buying their food. Some children live at home until their caregiver can no longer care for them. Other families have one parent move to a part-time job or stay at home, so there is more help at home. Some families move from a two-income home to one income and, in return, have less money to spend on everyday activities or the proper education for their children. Several factors add to the costs of ASD. This post will cover three expensive costs that come alongside a diagnosis of autism: education, medical, and therapy.

Public schooling in the United States is legally required to offer special education to those who qualify. “Under IDEA, children are legally entitled to a free and appropriate public education in the least restrictive setting” (The lifetime social cost of autism: 1990-2029). There are, however, private schools for children with autism. The downfall of these schools is the price. They can range anywhere from $15,000 to $100,000 or more, depending on the type of care needed for the child, location, and schooling (Elemy).

Medical costs also vary for each child. “Due to the complex medical and educational/behavioral needs of children with autism, parents are more likely to experience significant stress and financial problems and to report difficulty accessing health care and support service” (Medical Care for Children with Autism Spectrum Disorder). In this study, 114 parents took a survey. The results concluded that more than 50% of parents acknowledged concerns about sleep, intestinal, bathroom, food, feeding, and more. Children or young adults require tests, bloodwork, doctor trips, and prescribed medication.

An article posted by Pediatric Research states that cost is a common barrier to healthcare access. “In the USA, annual healthcare costs for autistic individuals increase with age, $6,467 (0-5 years), to $9,053 (6-17 years), to $13,580 (18+ years of age). It is significantly higher for individuals with co-occurring diagnosis” (Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood). These costs are all autism-related costs, and expenses rise as you add the number of times people are sick or another diagnosis that may come alongside autism.

Therapy costs are another high-paying need for those with autism. The most common therapy costs include speech, occupational, and physical therapy and Applied Behavior Analysis (ABA). For some families, these therapies are covered by insurance; many are not. If not, the cost for ABA therapy ranges from $46,000 – $47,500 a year or about $120 an hour. Speech, occupational, and physical therapies cost about $75 for a half-hour session with the therapist (Direct and Indirect Cost of Having a Child with Autism). While expensive, these therapies can be very beneficial for a child’s growth.

Several costs can also be associated with an autism diagnosis that is not often considered. For many, autism is not the only diagnosis. Some diagnoses like anxiety, depression, pica, ADHD, and more may also be acquired by an individual with an autism diagnosis. This adds more doctors’ appointments, medication, and cash.

For example, a mother in the DFW area struggles with pica with her child. Meaning, that often, time is spent removing things from her son’s mouth, so he does not eat things that are incredibly harmful to him. In a matter of minutes, he has destroyed power cords, his mattress, headphones, the couch, and more. Every time one of these items is destroyed, out-of-pocket is the only way for this family to fix it.
People must understand the direct and indirect costs of an autism diagnosis. For parents new to an autism diagnosis, it helps to know where money will be placed to help their child(ren). It allows families to begin saving now for the higher costs when the time comes. Autism is not a cheap diagnosis. It is far more expensive to raise a child with autism. Education and understanding can help others become better advocates. Understanding the necessary costs of autism throughout one’s life mean they are better informed and educated on future needs and expenses. Assisting families to learn about opportunities such as grants, scholarships for school, training, and more are essential to help support or aid families with the high cost of raising a child or young adult with autism. Individuals or groups can donate and volunteer to serve and support organizations like Hope For Three, whose mission is to provide resources, referrals, and support in times of need.

Authored by Ashley Beck

Resources:

Cakir, Janet & Frye, Richard & Walker, Stephen. (2020). The lifetime social cost of autism: 1990–2029. Research in Autism Spectrum Disorders. 72. 101502. 10.1016/j.rasd.2019.101502.

“How Much ABA Therapy Costs (State by State).” The Elemy Learning Studio, 3 Dec. 2021, www.elemy.com/studio/aba-therapy/costs/.

Learning, Special. “Direct and Indirect Cost of Having a Child with Autism.” Special Learning, Inc, 6 Jan. 2022, www.special-learning.com/article__trashed/direct-and-indirect-cost-of-having-a-child-with-autism/.

Malik-Soni, N., Shaker, A., Luck, H. et al. Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood. Pediatr Res 91, 1028–1035 (2022). https://doi.org/10.1038/s41390-021-01465-y

Parker, Tim. “The Cost of Raising a Child in the United States.” Investopedia, Investopedia, 27 July 2022, www.investopedia.com/articles/personal-finance/090415/cost-raising-child-america.asp.

Rudy, Lisa Jo. “When Is Private School the Best Choice for a Child with Autism?” Verywell Health, Verywell Health, 10 June 2022, www.verywellhealth.com/private-school-pros-and-cons-for-autism-260429.

“The Average Annual Costs of Autism Nationwide.” The Elemy Learning Studio, 23 Dec. 2021, www.elemy.com/studio/autism/costs/#Costs_of_Autism_in_the_United_States.

Williams, P. G. “Medical Care for Children with Autism Spectrum Disorders.” Pediatrics for Parents28.9 (2012): 4-5. ProQuest. Web. 11 Aug. 2022