Early identification of autism spectrum disorder (ASD) expedites access to appropriate intervention and leads to improved functional outcomes (Dawson et al., 2010). Yet, despite concerns of possible ASD often noted by 18 months, the median age of diagnosis in the United States continues to hover around age four (Baio et al., 2018).
Children’s Specialized Hospital
There are significant income, racial, and ethnic disparities in the early identification of autism. For example, Latino children receive a diagnosis of ASD later than white non-Latino children (Magana et al., 2013; Mandell et al., 2002), are more likely to receive an alternate diagnosis such as a language disorder (Mandell et al., 2009), and when diagnosed, are more likely to have severe symptoms than white non-Latino children (Mandell et al., 2009; Palmer et al., 2010). Within the Latino population, disparities are especially pronounced for those with low English proficiency (Zuckerman et al., 2017). Reasons for these disparities have not been well-researched and are likely influenced by multiple factors including culture, ASD knowledge, social support, literacy issues, maternal education and number of sources of knowledge about ASD, and mistrust of health care providers. This suggests that it is important that primary providers solicit and understand parent concerns as this may help the decision-making process regarding types of evaluation and intervention needed.
While the American Academy of Pediatrics recommends screening all children for autism at 18 and 24 months using a validated autism screening tool, many children are not screened. Reasons that pediatricians may not screen for ASD include lack of time, limited reimbursement, workflow challenges, and inability to track and monitor referrals. Even when autism screening tools are used, these tools may not be universally effective among different racial, ethnic or cultural groups (Khowaja et al., 2015) or screening may only be offered in English. This may result in missed opportunities to identify young children at developmental risk, delaying enrollment in early intervention and having a potentially negative impact on child outcome.
Even when ASD has been diagnosed, minority or low-income children often have difficulty accessing services. For example, Zuckerman (2014) found that Latino parents of young children already diagnosed with ASD reported that providers sometimes dismissed parents’ concerns. This, coupled with a diagnostic process which was viewed as cumbersome, led many parents to normalize child behaviors, deny that a problem existed, and lose trust in the medical system.
Clinicians and researchers at Children’s Specialized Hospital have attempted to reduce income, language and racial or ethnic disparities in ASD diagnosis is various ways. This includes creation of new ASD screening tools with reduced literacy demands (Janvier et al., 2018). Janvier and colleagues created a tool, the Developmental Check In (DCI) that is primarily pictorial with limited wording and found it to be effective in identifying ASD within an underserved population of young children at risk for ASD. Currently, the DCI is being tested within a general population of young underserved children.
Other innovative efforts from Children’s Specialized Hospital to improve early access to diagnosis include reducing transportation, insurance and financial barriers by locating free developmental screening clinics within underserved communities (Harris & Norton, 2016). Research on this model found that although almost all children screened in the community-based clinics had a regular source of healthcare, 51% were found to be developmentally at risk and most reportedly had not previously been referred for evaluation.
Reducing disparities related to early identification of ASD must include improving access to services once an ASD diagnosis is made. Research and clinical practice needs to focus on best practices in training healthcare and other service providers to better communicate with families of young children in order to foster effective partnerships. Providing care within a medical home model is one method to address this issue. The medical home approach embraces family centered care and promotes care coordination across the various providers and settings involved with the child and family (see for example www.pcpcc.org). This approach benefits all and may be especially ideal for traditionally underserved populations.
In summary, approaches to improve access and reduce disparities to care for young children with ASD must include attention to improving applicability and format of screening tools, location of where and how screening is provided, communication between providers and families, and methods to promote linkage to services once children have been diagnosed. All of these areas are needed to help ensure that all children with ASD meet their potential.
For more information, email jharris@childrens-specialized.org, call 908-301-2525, and visit www.childrens-specialized.org.
References
Baio J, Wiggins L et al. (2018) Prevalence of autism spectrum disorder among children aged 8 years-Autism and developmental disabilities monitoring network, 11 sites, United States, 2014. MMWR Surveill Summ, 67(6), 1-23.
Dawson G, Rogers S, Munson J et al. (2010) Randomized, controlled trial of an intervention for toddlers with autism: The Early Start Denver Model. Pediatrics 125(1):e17-23. doi: 10.1542/peds.2009-0958. Epub 2009 Nov 30.
Harris J & Norton A (2016) The Quick Peek Program: A model for developmental screening within underserved communities. Infants & Young Children, 29(4), 290–298.
Janvier YM, Coffield CN, Harris JF et al. (2018) The Developmental Check-In: Development and initial testing of an autism screening tool targeting young children from underserved communities. Autism, DOI: 10.1177/1362361318770430.
Khowaja MK, Hazzard AP & Robins DL (2015) Sociodemographic barriers to early detection of autism: Screening and evaluation using the M-CHAT, M-CHAT-R, and follow-up. Journal of Autism and Developmental Disorders 45(6): 1797-1808.
Magana S, Lopez K, Aguinaga A et al. (2013) Access to diagnosis and treatment services among Latino children with autism spectrum disorders. Intellectual and Developmental Disorders, 51(3), 141-153.
Mandell DS, Listerud J, Levy S et al. (2002) Race differences in the age at diagnosis among Medicaid-eligible children with autism, Journal of the American Academy of Child and Adolescent Psychiatry 41(12): 1447–1453.
Mandell DS, Wiggins LD, Carpenter LA et al. (2009) Racial/ethnic disparities in the identification of children with autism spectrum disorders, American Journal of Public Health, 99(3): 493-498.
Palmer RF, Walker T, Mandell D et al. (2010) Explaining low rates of autism among Hispanic schoolchildren in Texas. Am Journal of Public Health 100(2):270-272.
Zuckerman KE, Sinche B, Meija A et al. (2014) Latino parents’ perspectives of barriers to autism diagnosis, Academic Pediatrics 14(3):301-308.2014.
Zuckerman KE, Lindly OJ, Reyes NM et al. (2017) Disparities in diagnosis and treatment of autism in Latino and non-Latino white families. Pediatrics 139(5):e20163010.
