Research reveals racial, ethnic, and socioeconomic disparities in autism diagnosis; there is limited information on potential disparities related to other dimensions of services.
We reviewed evidence related to disparities in service use, intervention effectiveness, and quality of care provided to children with autism by race, ethnicity, and/or socioeconomic status.
Medline, PsychInfo, Educational Resources Informational Clearinghouse, and the Cumulative Index to Nursing and Allied Health Literature were searched by using a combination of Medical Subject Headings terms and keywords related to autism, disparities, treatment, and services.
Included studies addressed at least one key question and met eligibility criteria.
Two authors reviewed the titles and abstracts of articles and reviewed the full text of potentially relevant articles. Authors extracted information from articles that were deemed appropriate.
Treatment disparities exist for access to care, referral frequency, number of service hours, and proportion of unmet service needs. Evidence revealed that racial and ethnic minority groups and children from low-income families have less access to acute care, specialized services, educational services, and community services compared with higher-income and white families. We found no studies in which differences in intervention effectiveness were examined. Several studies revealed disparities such that African American and Hispanic families and those from low-income households reported lower quality of care.
The body of literature on this topic is small; hence it served as a limitation to this review.
The documented disparities in access and quality of care may further identify groups in need of outreach, care coordination, and/or other interventions.
Citations: Smith KA., Gehricke JG., Iadarola S., Wolfe A., Kuhlthau KA., (2020).
Disparities in Service Use Among Children With Autism: A Systematic Review. Pediatrics, 145(Suppl 1):S35-S46. doi: 10.1542/peds.2019-1895G.
Open access article: (https://link.springer.com/article/10.1007/s11920-020-1136-7#citeas )
Purpose of Review
We review original research about services for adults on the autism spectrum published from January 2013 through December 2018. The main aim is to characterize the topical and methodological aspects of research about services. We review research on services related to employment, living in the community, and social participation. We compare our results with those from a similar review published in 2012 to assess progress and identify where new directions in research about services for adults with autism are needed.
We found the evidence base about services for adults on the autism spectrum remains very small and highly variable in aims and methods. There is wide variability in methods used to define sampling frames and recruit participants. Most studies focus on employment. Almost no studies examine the overall ecosystem of services serving autistic adults. Few studies use a conceptual framework for understanding access to, or improvement of, services.
The small size of the extant research coupled with inconsistent quality prevents the accumulation of new knowledge in ways that would significantly inform the improvement of systems of care for the growing population of adults on the autism spectrum.
Citations: Shattuck, P.T., Garfield, T., Roux, A.M. et al. Services for Adults With Autism Spectrum Disorder: a Systems Perspective. Curr Psychiatry Rep 22, 13 (2020). https://doi.org/10.1007/s11920-020-1136-7.
Open access article: ( https://pubmed.ncbi.nlm.nih.gov/33502713/ )
Research providing an evidence-base for autistic adult services is sparse. The Autism Spectrum Disorders in the European Union (ASDEU) network implemented an on-line survey to determine gaps in autistic adult diagnostic evaluation and post-diagnostic support services. More than 55% in all groups experienced most of the recommended features for diagnostic evaluation for autistic adults. In contrast, < 2% of adults or carers, and < 21% of professionals experienced each of the recommended features for post-diagnostic support. In contrast to 61% of professionals, only about 30% of autistic adults and carers had knowledge of good local services models for autism diagnosis in adulthood. There are major differences between good practice guidelines for diagnostic and post-diagnostic care for autistic adults, and what is actually experienced by services users and professionals.
Citations: Scattoni ML., Micai M., Ciaramella A., Salvitti T., Fulceri F., Fatta LM., et al., (2021). Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study. J Autism Dev Disord., 51(11):4129-4146. doi: 10.1007/s10803-021-04873-5.
Open access article: (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8391872/ )
The COVID-19 pandemic has created unprecedented challenges and disruptions for autistic individuals receiving specialized treatment services. This caregiver-report survey study (n = 339) explored predictors of satisfaction with autism services during COVID-19 to improve perceived support for these families. Specifically, we investigated whether service delivery medium (telehealth vs. in person), child’s emotional functioning, and caregiver stress would predict satisfaction with the most highly utilized services. Satisfaction ratings for ABA/behavioral, speech/language, and occupational therapy were lower when delivered via telehealth as compared to in person. Caregivers who reported higher emotional dysregulation in their children were less satisfied with behavioral therapy services. These results provide a critical caregiver-informed perspective on factors influencing satisfaction with specialized autism services during COVID-19.
Citations: Ferguson, E.F., Jimenez-Muñoz, M., Feerst, H. et al. Predictors of Satisfaction with Autism Treatment Services During COVID-19. J Autism Dev Disord 52, 3686–3697 (2022). https://doi.org/10.1007/s10803-021-05232-0