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Summary of Advances

In Autism Research


Screening and Diagnosis

Race/ethnic inequities in conjoint monitoring and screening for US children 3 and under.
Barger B, Benevides T, Rizk S, Rice C, Heiman H, Salmon A, Sanchez-Alvarez S. Disabil Health). 2022;15(1):101179. [PMID: 34412986]


Hispanic and Black children are less likely to receive combined screening and monitoring for developmental disabilities.

Background: The American Academy of Pediatrics (AAP) encourages pediatricians to conduct developmental monitoring (i.e., ongoing assessment of developmental progress) and screening (i.e., a formal process conducted at specific ages to aid diagnosis) for autism at well-child visits for all infants and young children. Compared to either monitoring or screening alone, this combined strategy is associated with children with autism and other developmental disabilities receiving appropriate early intervention services. Notably, non-White children with autism or other developmental disabilities are often identified later than White children. This study aims to determine whether there are racial or ethnic inequities in children's receipt of combined developmental monitoring and screening.

Methods & Findings: Researchers analyzed results of the National Survey on Children's Health, a caregiver survey that collects data on the physical and emotional health of children under age 18 in the United States (U.S.). Overall, approximately 23% of caregivers reported receiving monitoring and screening in combination with one another, 14% receiving screening alone, 13% monitoring alone, and 50% receiving no monitoring or screening. White children were more likely to receive combined monitoring and screening than Hispanic and Black children. Conversely, caregivers of Hispanic and Black children reported that they received neither monitoring nor screening at higher rates than White children. The researchers also used the survey data to identify other characteristics that may influence how likely a child is to receive monitoring and screening. Racial and ethnic differences were explained by some of these other characteristics, such as having an established healthcare provider, insurance status, and English-speaking status. Having an established healthcare provider was an especially strong factor in likelihood of receiving combined monitoring and screening.

Implications: Because having a consistent source of healthcare is strongly associated with race and ethnicity, researchers concluded that this factor may be the primary cause of lower rates of combined monitoring and screening in non-White children. In turn, this factor likely contributes to later identification and lower rates of receipt of intervention and community-based services, which has been found in previous studies. These findings underline that equitable access to consistent sources of healthcare is an important precursor to effective screening/monitoring and interventions for autism.

Effect of Family Navigation on Diagnostic Ascertainment Among Children at Risk for Autism: A Randomized Clinical Trial from DBPNet.
Feinberg E, Augustyn M, Broder-Fingert S, Bennett A, Weitzman C, Kuhn J, Hickey E, Chu A, Levinson J, Ellenberg JS, Silverstein M, Cabral HJ, Patts G, Diaz-Linhart Y, Fernandez-Pastrana I, Rosenberg J, Miller JS, Guevara JP, Fenick AM, Blum NJ. JAMA Pediatr. 2021;175(3):243-250. [PMID: 33427861]


Family navigation services can help reduce racial and ethnic disparities in autism evaluation and diagnosis.

Background: Low-income families and families of racial or ethnic minorities have reduced rates of accessing autism diagnostic services, compared to higher-income and White families. A way to potentially reduce these disparities is family navigation, which is an individually tailored, culturally informed care management strategy. Navigators are community health workers that engage an entire family to coordinate care services when a screening result indicates a potential ASD diagnosis. This study aimed to determine the effect of family navigation on the length of time between an initial positive screening for ASD and clinical diagnostic evaluation.

Methods & Findings: The study included 250 children who were identified as potentially having ASD during routine well-child visits at 11 primary care sites that were part of three different large integrated healthcare systems in Massachusetts, Pennsylvania, and Connecticut. The children were randomly assigned into one of two groups: family navigation or conventional care management. The two groups were demographically similar, and both were ethnically and racially diverse, including Hispanic, Black, White, and ethnically diverse non-U.S. born children. To support this diverse study population, researchers trained navigators who were predominantly bilingual and bicultural community members. The proportion of children who received ASD diagnoses was similar whether family navigation or conventional care management was used. However, the study found that more children in the family navigation group received a clinical diagnostic evaluation for ASD within one year compared to children whose care was conventionally managed. Family navigation had a greater positive impact for Hispanic families than non-Hispanic families. This greater level of impact was attributed to the additional barriers that may be faced by non-English speaking families and how those barriers were reduced by bilingual assistance. In addition, having bicultural navigators who share common experiences and values with families in the study may have been more important for the engagement of Hispanic families than for non-Hispanic families.

Implications: Results from this study indicate that family navigation has the potential to reduce disparities in ASD diagnosis. Family navigation may be more likely to help certain groups, especially Hispanic and immigrant groups. The researchers hypothesize that these groups may face language and cultural barriers that limit their ability to take advantage of services when offered through conventional care. Thus, these groups are more likely to benefit from the language and cultural support provided by the family navigation program. Future studies can further evaluate the contextual factors that contribute to the effectiveness of family navigation.

Sex differences in scores on standardized measures of autism symptoms: a multisite integrative data analysis.
Kaat AJ, Shui AM, Ghods SS, Farmer CA, Esler AN, Thurm A, Georgiades S, Kanne SM, Lord C, Kim YS, Bishop SL J Child Psychol Psychiatry. 2021;62(1):97-106. [PMID: 32314393]


Autism screening tests do not need to be scored differently for boys versus girls.

Background: Among people diagnosed with autism, boys are overrepresented relative to girls. However, this imbalance may be more dramatic than the actual sex-based difference in autism rates. One factor driving this imbalance may be commonly used ASD diagnostic tools, which may be less attuned to detecting autism in girls. Girls may also have less pronounced or different signs of autism or might be better than boys at masking or camouflaging (i.e., hiding) autism-related behaviors. Notably, according to current statistics, girls diagnosed with ASD are more likely to have very low intelligence quotient (IQ), which suggests that high-IQ autistic girls may be camouflaging their autistic traits and therefore not diagnosed. Thus, this study aimed to determine whether scores on ASD diagnostic tests differ between girls and boys after accounting for factors such as age, nonverbal intelligence quotient (i.e., scores on an IQ test that does not use words), and language level.

Methods & Findings: Researchers assessed clinical data representing 8,985 individuals gathered from 20 different autism-focused studies and clinics. Researchers' analyses indicated that scores on certain assessments did differ by sex. Specifically, young boys had higher raw scores on tests measuring restricted and repetitive behaviors, based on both parents' reports and researchers' direct observations of behavior. During adolescence, however, girls showed these behaviors more frequently or intensely. Although social communication scores on some tests did not differ by sex, girls were less effective at social communication on one such test in adolescence. All these observed sex differences, however, were very small.

Implications: The small sex differences observed in this study suggest that existing diagnostic tests can identify ASD regardless of sex. In addition, researchers suggested that even observed sex differences on ASD diagnoses during adolescence may result from parents having higher expectations for the social capacity of girls compared to boys. Overall, although girls may experience different autism-related challenges than boys, this study does not support a need to develop sex-specific diagnostic scoring. However, the results do suggest that less sensitive diagnostic tests should be checked for their ability to capture all relevant autism-related traits.

Screening and Diagnosis

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