Family Connections with Pediatrics Blog
As the saying goes…“timing is everything.” This is true in life and often in medical care. While there are some aspects of time we can control, often there are other factors that challenge our ability to be “on time”.
This too, is true in the care of children with autism.
Autism spectrum disorder (ASD) can be diagnosed as early as 14 months, and guidance for your child’s doctor says to screen for ASD at 18 and 24 months.1,2 However, the average age of diagnosis is not until much later- between 4 and 5 years.3
Why is there a delay? What things can affect being “on time” in diagnosing ASD? In this month’s Pediatrics, the article “Primary Care Perspectives on Autism Care” shares the experiences and needs of doctors to identify and manage ASD in toddlers (10.1542/peds.2022-057712).
What was the goal of the study?
Many of the barriers that affect access to care for a child with ASD, like lack of communication, lack of doctor confidence in providing care,, lack of resources, and lack of concrete diagnosis, are well-known in many places in the US.4 In this article, the authors specifically wanted to know about a doctor’s feelings about discussing ASD with families, and how this affects the care they provide, to help develop ways to better support autism care. This study interviewed doctors from 8 clinics in the University of Michigan health system.
What did the study find?
The authors found 7 themes about the experiences of primary care doctors regarding the diagnosis and care of children with ASD. The themes reflect challenges at every stage of care, and how these challenges affect how a doctor talks about ASD, when they do so, and how they seek services. The themes discussed include the following:
Challenges in the Identification process:
- The Parent Lens: how experience and background may affect how a parent sees their child
- The ‘A’ Word: when to use the word “autism” in talking with parents
Barriers in Diagnosis and Referral Process:
- Autism Labyrinth: the difficult process that leads to a diagnosis
- Provider Disempowerment: how current systems of care prevent primary care physicians from making a diagnosis
- Parent Activation as a Source of Inequities: how to support acceptance of diagnosis
Treatment and Follow-up:
- The ‘Black Box’: confusion about how systems of care work
- Provider Emotional Investment: feeling of helplessness with process and systems
What can you do with this article?
- If you notice things about how your toddler is growing that make you think that your child may not be growing or developing in a typical way, use this article to start talking with your child’s doctor about what you see. Sharing the article is a helpful way to bring up a topic that can be uncomfortable.
- If these barriers or others have prevented early autism diagnosis of your child, read this article, and share it with your child’s doctor. It is never too late to talk about what you see!
- If you partner or advise on projects working to improve autism care, share this article. It offers a unique look at how doctors feel and experience autism care that may help lead to earlier diagnosis and treatment.
- Maenner MJ, Shaw KA, Baio J, et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016. MMWR Surveill Summ. 2020;69(4):1-12.
- Hyman SL, Levy SE, Myers SM. Identification, Evaluation, and Management of Children With Autism Spectrum Disorder. Pediatrics. 2020;145(1). doi:10.1542/peds.2019-3447
- National Center on Birth Defects and Developmental Disabilities. Spotlight on Delay to Accessing Services | ADDM Network Community Report.; 2018. cdc.gov/ActEarly. Accessed March 8, 2021.
- Malik-Soni N, Shaker A, Luck H, et al. Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood. Pediatr Res. 2021. doi:10.1038/S41390-021-01465-Y