How to Support Families of Young Children with Autism

This post was co-authored by Sarah MacLaughlin, LSW, and Rahil Briggs, Psy.D.

In the United States, the average age of diagnosis of autism spectrum disorder (ASD) is around age 4, although recognizable symptoms often emerge in the first and second years of life and earlier diagnosis and treatment are significantly related to better outcomes (Shaw et al, 2016). Diagnosis for ASD can be challenging due to the spectrum of symptom severity and presentation. Even when behavioral or developmental differences are noted, it can be a long road for families to reach a diagnosis and finally, treatment—a road that often involves multiple professionals.

The pandemic threw a monkey wrench in an already struggling system of care. Many families of babies and toddlers were isolating until very recently—possibly missing well-child visits and skipping playgroups—resulting in less formal and informal surveillance. This isolation has meant fewer opportunities to compare child development and behavior in a “community sandbox,” or to receive proper screening and referrals for intervention.

Source: Shutterstock/behindlens

This delay in surveillance and referrals can place children at increased risk specifically because children with ASD benefit greatly from intervention and support that occurs as early as possible after diagnosis (Carbone et al, 2020). Research has indicated that ASD can sometimes be identified as early as 18 months, making regular well-child visits that include routine screenings for ASD critical for early diagnosis and effective treatment (CDC, April 2022).

Even before the pandemic, there was a shortage of professionals to both diagnose and treat autism in toddlers. In some parts of the country, families wait years for their children to see practitioners (Miller et al, 2022). These shortages were already happening before the pandemic started and have since worsened (Miller et al, 2022). Children living in families with low socioeconomic status often wait the longest of all (Daniels and Mandell, 2014).

Given the challenges families have encountered over the last few years, the following are some resources for practitioners to share with caregivers when developmental concerns arise:

• Families benefit from learning about and contacting their local Early Intervention (EI) program for (mostly) free services when any developmental delay is suspected. EI and some other therapies and family treatments can be accessed prior to an autism or other formal diagnosis. (It may be helpful to share with families that EI is not run by the educational system and does not automatically track a child into special education.)
• The Centers for Disease Control’s (CDC) updated developmental milestones may assist families in understanding their child’s development in context. A recent update raised the percentage of children who typically meet certain milestones from 50 to 75 percent, with a goal of catching delays earlier. The CDC’s Learn the Signs. Act Early campaign includes a milestones tracker app for caregivers to assist with this process.
• The American Speech-Language-Hearing Association (ASHA) has its own developmental chart with a focus on speech, language, and hearing milestones (which generally aligns with CDC guidance). It includes a “What can I do to help?” section for caregivers with ideas for responding to areas of concern.

Families benefit from support through every step of the process—from suspecting their child may have a delay that indicates ASD to referral, diagnosis, and ongoing treatment. While the pandemic has created additional challenges on this path, pediatric care practitioners, early childhood educators, and other providers are more important partners than ever for connecting caregivers with community services that can help them help their child.