Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood

There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

Abstract

Most individuals with autism spectrum disorder (ASD)—a complex, life-long developmental disorder—do not have access to the care required to address their diverse health needs. Here, we review: (1) common barriers to healthcare access (shortage/cost of services; physician awareness; stigma); (2) barriers encountered primarily during childhood (limited screening/diagnosis; unclear referral pathways), transition to adulthood (insufficient healthcare transition services; suboptimal physician awareness of healthcare needs) and adulthood (shortage of services/limited insurance; communication difficulties with physicians; limited awareness of healthcare needs of aging adults); and (3) advances in research/program development for better healthcare access. A robust understanding of barriers to accessing healthcare across the lifespan of autistic individuals is critical to ensuring the best use of healthcare resources to improve social, physical, and mental health outcomes. Stakeholders must strengthen healthcare service provision by coming together to: better understand healthcare needs of underserved populations; strengthen medical training on care of autistic individuals; increase public awareness of ASD; promote research into/uptake of tools for ASD screening, diagnosis, and treatment; understand specific healthcare needs of autistic individuals in lower resource countries; and conduct longitudinal studies to understand the lifetime health, social, and economic impacts of ASD and enable the evaluation of novel approaches to increasing healthcare access.

Impact

Despite the growing body of evidence, our understanding of barriers to healthcare encountered by individuals with ASD remains limited, particularly beyond childhood and in lower resource countries.
We describe current and emerging barriers to healthcare access encountered by individuals with ASD across the lifespan.
We recommend that stakeholders develop evidence-informed policies, programs, and technologies that address barriers to healthcare access for individuals with ASD and consider broad, equitable implementation to maximize impact.

Related collections

Most cited references 95

Record: found
Abstract: found
Article: found

Is Open Access

Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016

Matthew J Maenner, Kelly Shaw, Jon Baio … (2020)

Problem/Condition Autism spectrum disorder (ASD). Period Covered 2016. Description of System The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance program that provides estimates of the prevalence of ASD among children aged 8 years whose parents or guardians live in 11 ADDM Network sites in the United States (Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin). Surveillance is conducted in two phases. The first phase involves review and abstraction of comprehensive evaluations that were completed by medical and educational service providers in the community. In the second phase, experienced clinicians who systematically review all abstracted information determine ASD case status. The case definition is based on ASD criteria described in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Results For 2016, across all 11 sites, ASD prevalence was 18.5 per 1,000 (one in 54) children aged 8 years, and ASD was 4.3 times as prevalent among boys as among girls. ASD prevalence varied by site, ranging from 13.1 (Colorado) to 31.4 (New Jersey). Prevalence estimates were approximately identical for non-Hispanic white (white), non-Hispanic black (black), and Asian/Pacific Islander children (18.5, 18.3, and 17.9, respectively) but lower for Hispanic children (15.4). Among children with ASD for whom data on intellectual or cognitive functioning were available, 33% were classified as having intellectual disability (intelligence quotient [IQ] ≤70); this percentage was higher among girls than boys (40% versus 32%) and among black and Hispanic than white children (47%, 36%, and 27%, respectively). Black children with ASD were less likely to have a first evaluation by age 36 months than were white children with ASD (40% versus 45%). The overall median age at earliest known ASD diagnosis (51 months) was similar by sex and racial and ethnic groups; however, black children with IQ ≤70 had a later median age at ASD diagnosis than white children with IQ ≤70 (48 months versus 42 months). Interpretation The prevalence of ASD varied considerably across sites and was higher than previous estimates since 2014. Although no overall difference in ASD prevalence between black and white children aged 8 years was observed, the disparities for black children persisted in early evaluation and diagnosis of ASD. Hispanic children also continue to be identified as having ASD less frequently than white or black children. Public Health Action These findings highlight the variability in the evaluation and detection of ASD across communities and between sociodemographic groups. Continued efforts are needed for early and equitable identification of ASD and timely enrollment in services.

0 comments Cited 834 times – based on 0 reviews      Review now

Bookmark

Record: found
Abstract: found
Article: found

Is Open Access

Global Prevalence of Autism and Other Pervasive Developmental Disorders

Mayada Elsabbagh, Gauri Divan, Yun-Joo Koh … (2012)

We provide a systematic review of epidemiological surveys of autistic disorder and pervasive developmental disorders (PDDs) worldwide. A secondary aim was to consider the possible impact of geographic, cultural/ethnic, and socioeconomic factors on prevalence estimates and on clinical presentation of PDD. Based on the evidence reviewed, the median of prevalence estimates of autism spectrum disorders was 62/10 000. While existing estimates are variable, the evidence reviewed does not support differences in PDD prevalence by geographic region nor of a strong impact of ethnic/cultural or socioeconomic factors. However, power to detect such effects is seriously limited in existing data sets, particularly in low-income countries. While it is clear that prevalence estimates have increased over time and these vary in different neighboring and distant regions, these findings most likely represent broadening of the diagnostic concets, diagnostic switching from other developmental disabilities to PDD, service availability, and awareness of autistic spectrum disorders in both the lay and professional public. The lack of evidence from the majority of the world's population suggests a critical need for further research and capacity building in low- and middle-income countries. Autism Res 2012, 5: 160–179. © 2012 International Society for Autism Research, Wiley Periodicals, Inc.

0 comments Cited 398 times – based on 0 reviews      Review now

Bookmark

Record: found
Abstract: found
Article: not found

Autism spectrum disorder

Catherine Lord, Traolach S Brugha, Tony Charman … (2020)

Autism spectrum disorder is a construct used to describe individuals with a specific combination of impairments in social communication and repetitive behaviours, highly restricted interests and/or sensory behaviours beginning early in life. The worldwide prevalence of autism is just under 1%, but estimates are higher in high-income countries. Although gross brain pathology is not characteristic of autism, subtle anatomical and functional differences have been observed in post-mortem, neuroimaging and electrophysiological studies. Initially, it was hoped that accurate measurement of behavioural phenotypes would lead to specific genetic subtypes, but genetic findings have mainly applied to heterogeneous groups that are not specific to autism. Psychosocial interventions in children can improve specific behaviours, such as joint attention, language and social engagement, that may affect further development and could reduce symptom severity. However, further research is necessary to identify the long-term needs of people with autism, and treatments and the mechanisms behind them that could result in improved independence and quality of life over time. Families are often the major source of support for people with autism throughout much of life and need to be considered, along with the perspectives of autistic individuals, in both research and practice.

0 comments Cited 383 times – based on 0 reviews      Review now

Bookmark

All references

Author and article information

Contributors

Thomas W. Frazier: tfrazier@jcu.edu

Journal

Journal ID (nlm-ta): Pediatr Res

Journal ID (iso-abbrev): Pediatr Res

Title: Pediatric Research

Publisher: Nature Publishing Group US (New York )

ISSN (Print): 0031-3998

ISSN (Electronic): 1530-0447

Publication date (Electronic): 25 March 2021

Pages: 1-8

Affiliations

[1 ]Shift Health, Toronto, ON Canada

[2 ]GRID grid.25073.33, ISNI 0000 0004 1936 8227, Department of Pathology and Molecular Medicine, , McMaster University, ; Hamilton, ON Canada

[3 ]GRID grid.17091.3e, ISNI 0000 0001 2288 9830, Department of Medical Genetics, Faculty of Medicine, , University of British Columbia, ; Vancouver, BC Canada

[4 ]GRID grid.498709.b, ISNI 0000 0004 6054 152X, Autism Canada, ; Toronto, ON Canada

[5 ]Child and Adolescent Psychiatry Service, Policlínica Gipuzkoa and GAUTENA Autism Society, Donostia/San Sebastián, Spain

[6 ]GRID grid.427598.5, ISNI 0000 0004 4663 7867, Autism Speaks, ; New York, NY USA

Article

Publisher ID: 1465

DOI: 10.1038/s41390-021-01465-y

PMC ID: 7993081

PubMed ID: 33767375

SO-VID: f2d8c3b6-9306-4a68-8226-a6aac9c9d01a

License:

This article is made available via the PMC Open Access Subset for unrestricted research re-use and secondary analysis in any form or by any means with acknowledgement of the original source. These permissions are granted for the duration of the World Health Organization (WHO) declaration of COVID-19 as a global pandemic.

History

Date received : 21 July 2020

Date revision received : 21 December 2020

Date accepted : 23 February 2021

Comments

Comment on this article

scite_

Cited by 36

See all cited by

Most referenced authors 1,602

See all reference authors

- Version 1
- Version 1

Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood

Read this article at

Abstract

Abstract

Impact

Related collections

Journal for ReAttach Therapy and Developmental Diversities

Most cited references 95

Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016

Global Prevalence of Autism and Other Pervasive Developmental Disorders

Autism spectrum disorder

Author and article information

Contributors

Journal

Affiliations

Article

History

Categories

Comments

Comment on this article

Similar content 30

Cited by 36

Most referenced authors 1,602