In The Politics of Autism, I write that autism parents must be advocates for their children, who in turn must grow up to beadvocates for themselves.
Very quickly, parents will learn that there is no one-stop shopping in the autism world. Various providers offer various services, with various levels of support from the government, which largely depends on where one lives. Wherever they turn, parents run into red tape. “Trying to obtain services for a special-needs child is a never-ending process,” one mother told a Tennessee journalist. “Taking care of the children is much simpler than taking care of the paperwork.”
A nationwide survey of 1,000 parents of children with autism spectrum disorder (ASD) ages 10 years or younger found that on average, there is at least a 15-month delay between the time parents first suspected a developmental issue and the onset of treatment. Such delays result in lost treatment opportunity which can negatively impact a child's overall development.1 Shockingly, when 32% of parents sought treatment, they were told their child would outgrow it, further delaying access to instrumental treatment. The nationwide survey was commissioned by Centria Autism, a leading provider of therapy based on the principles of Applied Behavior Analysis (ABA) for children with ASD, and was conducted by Wakefield Research.2...
ASD is an urgent public health priority in the U.S. As of 2018, an estimated 1 in 59 children have been identified with ASD.3 Of the 3.8 million children born in the U.S. in 2017, between 65,000 and 70,000 are expected to meet the diagnostic criteria for ASD in 2019.4
The inaugural survey, called the Centria Autism Barometer, also exposed unmet needs in providing evidence-based approaches and treatment for children with ASD, parental concern surrounding how others view their child, and the impact on a parent's career and personal life. Additional key findings include:
- Eight medical visits to diagnose: Parents reported taking an average of 8.3 medical visits before their child was officially diagnosed, with more than half of parents (57%) noting that the diagnosis process was difficult, and 84% saying it was stressful.
- Overwhelming concern on how society treats & views ASD children: 92% of parents who have children with ASD are concerned with how other children treat their child. 84% are concerned about how the public views their child, and 80% are concerned with how teachers treat their child.
- Autism therapy is like having an extra part-time job for parents: On average, parents spend 20 hours a week on their child's ASD treatment, and 86% wish there was a person they could turn to help them coordinate their child's treatment and care.
Applied Behavior Analysis (ABA) therapy is the standard-of-care, preferred treatment for ASD, and is the only evidence-based behavioral therapy proven to treat the core symptoms of ASD or ASD-related disabilities and to support long-term outcomes. ABA therapy can be adapted to meet the needs of each unique person and breaks down everyday tasks into easy-to-follow steps, using positive reinforcement and repetition. Yet, pediatricians are less likely to recommend ABA therapy (69%) than occupational/physical therapy (88%) or speech therapy (90%) due to lack of familiarity with ABA and the requirements for the treatment plan.5
1 Baio J, Wiggins L, Christensen DL, et al. Prevalence of autism spectrum disorder among children aged 8 years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveill Sums. 2018;67(6):1-23. (CDC prevalence estimates are for 4 years prior to the report date.)
2 The Centria Autism Survey was conducted online by Wakefield Research among 1,000 parents of children 10 and younger with Autism Spectrum Disorder between February 28 and March 14, 2019. The margin of error was +/- 3.1%.
3 "Autism Spectrum Disorder (ASD)." Centers for Disease Control and Prevention, 15 Nov. 2018, www.cdc.gov/ncbddd/autism/data.html.
4 "Autism Spectrum Disorder (ASD)." Centers for Disease Control and Prevention, 15 Nov. 2018, www.cdc.gov/ncbddd/autism/data.html.
5 MedPanel U.S. Pediatrician ABA Survey Final Report. April 24, 2018.