(https://www.ingentaconnect.com/content/wk/dbp/2022/00000043/00000006/art00002)

Objective:
The objective of this study was to identify factors associated with parent-reported problems
accessing needed mental health services (MHS) in youth with autism spectrum disorder and anxiety.

Methods:
This study is a secondary analysis using the National Survey of Children's Health 2016 to 2017 data
sets with multivariable logistic regression. Subjects are 6 to 17 year olds with parent-reported autism
spectrum disorder (ASD) and anxiety. Outcome is parent-reported challenge accessing needed
mental health treatment, dichotomized to not a problem versus problem. Covariates included
race/ethnicity, intellectual disability, insurance, medical home, poverty level, and parent education
level.

Results:
The sample included 568 youth with ASD and anxiety—78% male subjects, mean age 12.5 years, and
63% White, non-Hispanic. Fifty-three percent of youth with ASD and anxiety had parent-reported
problems accessing needed MHS. Lack of medical home (adjusted odds ratio [aOR] 5.97, 95%
confidence interval [CI] [2.72–13.09]) and coexisting intellectual disability (aOR 2.23, 95% CI
[1.08–4.60]) were significantly associated with problems accessing MHS. Reported family incomes at
0% to 99% and 100% to 199% of the federal poverty level as compared with family income at 400%
federal poverty level or above (aOR 0.32, 95% CI [0.11–0.94] and aOR 0.35, 95% CI [0.13–0.95],
respectively) was associated with decreased problems accessing MHS.

Conclusion:
In this nationally representative study, more than half of youth with ASD and anxiety had parent-
reported problems accessing needed MHS. Lack of a medical home, co-occurring intellectual
disability, and higher socioeconomic status (SES) are associated with problems accessing MHS.
Therefore, policies to support the medical home; increase mental health supports available for those
with ASD, anxiety, and coexisting intellectual disability; and support access for all SES levels may
increase mental health access.

Citation: Conrad C., Cerda N., Harstad E., (2022). Parent-Reported Problems Accessing Mental Health
Services Among a National Sample of Youth with Autism Spectrum Disorder and Anxiety. Journal of
Developmental & Behavioral Pediatrics, 43(6): 320-326.

( https://journals.sagepub.com/doi/abs/10.1177/13623613221150569 )

Abstract

Many of the nearly six million autistic adolescents and adults in the United States require support to
navigate daily life. Family members often provide the first line of support for autistic youth by
providing care and coordinating services. Although considerable research has examined the
perspectives of family members caring for young autistic children, comparatively less has focused on
those caring for transition-age youth who often struggle to access needed services as they leave
child-serving systems of care. This study examined caregiver-reported barriers to service for 174
adolescents and young adults on the spectrum (ages 16–30) and the association between such
barriers and unmet service needs. Exploratory factor analysis suggested two service barrier domains:
access (e.g., cost) and quality (e.g., providers not trained). Regression models indicated that
caregivers whose youth were diagnosed at older ages perceived both greater access and quality
barriers. Male caregivers reported fewer access barriers, and those who perceived greater caregiver
burdens (daily life disruptions, financial difficulties, and worries) reported more access barriers.
Caregivers whose youth lived with them reported fewer quality barriers. Greater access–but not
quality–service barriers predicted greater unmet service needs. Findings have implications for
service delivery to autistic youth and specific directions for future research.

Lay Abstract

Prior studies have described the roadblocks, or barriers, to needed services experienced by families
with young autistic children, but less research has focused on those faced by autistic adolescents
and young adults. In this study, we wished to understand the barriers to service experienced by
autistic adolescents and young adults and their families. We surveyed 174 caregivers of autistic
youth between 16 to 30 years old. We found that caregivers who felt more caregiving burden had
more difficulty accessing services for their youth. Specifically, caregivers who felt more strongly that
their daily lives had been disrupted, felt more financial strain, and worried more about their youth
well-being experienced more roadblocks to getting services for the youth. Male caregivers also
reported fewer difficulties related to service access. Importantly, the older the youth was when they
had been diagnosed with autism, the more service barriers their caregivers reported. We did not see
any differences in the level of barriers experienced by youth who lived in urban versus suburban
settings, or between white and non-white families. However, when youth lived with their caregivers
(rather than, for example, in a group home), fewer quality-related barriers to services were
reported. Finally, greater access (but not quality) barriers were linked to youth having more unmet
service needs. These findings can help to reduce the barriers to service experienced by autistic
adolescents and young adults and their families.

Citation: Ishler, K. J., Berg, K. A., Olgac, T., Obeid, R., & Biegel, D. E. (2023). Barriers to service and
unmet need among autistic adolescents and young adults. Autism, 27(7), 1997-2010.
https://doi.org/10.1177/13623613221150569

Open access article: https://link.springer.com/article/10.1007/s11920-020-1136-7

Abstract

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.

Recent Findings 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.

Summary 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.

Citation: 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).

Open access article: https://pubmed.ncbi.nlm.nih.gov/31150751/

Abstract

Objective

A diversity of health professional disciplines provide services for children with autism spectrum disorder (ASD) in the United States. We conducted a systematic review examining the availability, distribution, and competencies of the US workforce for autism-related child health care services, and assess studies’ strength of evidence.

Method

We searched PubMed, PsychINFO, Embase, and Google Scholar from 2008 to 2018 for relevant US-based studies. Two investigators independently screened and evaluated studies against a set of prespecified inclusion criteria and evaluated strength of evidence (SOE) using a framework designed to integrate a mixed-methods research.

Results

Of 754 records identified, 33 studies (24 quantitative, 6 qualitative, and 3 mixed-methods) were included. Strength of evidence associated was low-to-moderate, with only 8 studies (24%) satisfying criteria for strong SOE. Geographies and provider cadres varied considerably. The most common specialties studied were pediatricians (n = 13), occupational therapists (n = 12), speech therapists (n = 11), physical therapists (n = 10), and child psychiatrists (n = 8). Topical areas included the following: provider availability by service area and care delivery model; qualitative assessments of provider availability and competency; role of insurance mandates in increasing access to providers: and disparities in access. Across provider categories, we found that workforce availability for autism-related services was limited in terms of overall numbers, time available, and knowledgeability. The greatest unmet need was observed among minorities and in rural settings. Most studies were short term, were limited in scope, and used convenience samples.

Conclusion

There is limited evidence to characterize the availability and distribution of the US workforce for autism-related child health care services. Existing evidence to date indicates significantly restricted availability.

Citation: McBain, R. K., Kareddy, V., Cantor, J. H., Stein, B. D., & Yu, H. (2020). Systematic Review: United States Workforce for Autism-Related Child Healthcare Services. Journal of the American Academy of Child and Adolescent Psychiatry, 59(1), 113–139.

( https://pubmed.ncbi.nlm.nih.gov/32238530/ )

Abstract

CONTEXT:

Research reveals racial, ethnic, and socioeconomic disparities in autism diagnosis; there is limited information on potential disparities related to other dimensions of services.

OBJECTIVE:

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.

DATA SOURCES:

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.

STUDY SELECTION:

Included studies addressed at least one key question and met eligibility criteria.

DATA EXTRACTION:

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.

RESULTS:

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.

LIMITATIONS:

The body of literature on this topic is small; hence it served as a limitation to this review.

CONCLUSIONS:

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.