Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood
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) barr...
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Veröffentlicht in: | Pediatric research 2022-04, Vol.91 (5), p.1028-1035 |
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description | 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. |
doi_str_mv | 10.1038/s41390-021-01465-y |
format | Article |
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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.</description><identifier>ISSN: 0031-3998</identifier><identifier>EISSN: 1530-0447</identifier><identifier>DOI: 10.1038/s41390-021-01465-y</identifier><identifier>PMID: 33767375</identifier><language>eng</language><publisher>New York: Nature Publishing Group US</publisher><subject>Adult ; Autism ; Autism Spectrum Disorder - diagnosis ; Autism Spectrum Disorder - psychology ; Autism Spectrum Disorder - therapy ; Autistic Disorder - diagnosis ; Communication ; Health Services Accessibility ; Humans ; Medicine ; Medicine & Public Health ; Pediatric Surgery ; Pediatrics ; Review ; Review Article ; Transition to Adult Care</subject><ispartof>Pediatric research, 2022-04, Vol.91 (5), p.1028-1035</ispartof><rights>The Author(s), under exclusive licence to the International Pediatric Research Foundation, Inc 2021</rights><rights>2021. The Author(s), under exclusive licence to the International Pediatric Research Foundation, Inc.</rights><rights>The Author(s), under exclusive licence to the International Pediatric Research Foundation, Inc 2021.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c474t-da77e257241691caf49800d6c0b57ddedb6437ca2e54aadad5cd1b730402be073</citedby><cites>FETCH-LOGICAL-c474t-da77e257241691caf49800d6c0b57ddedb6437ca2e54aadad5cd1b730402be073</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://link.springer.com/content/pdf/10.1038/s41390-021-01465-y$$EPDF$$P50$$Gspringer$$H</linktopdf><linktohtml>$$Uhttps://link.springer.com/10.1038/s41390-021-01465-y$$EHTML$$P50$$Gspringer$$H</linktohtml><link.rule.ids>230,314,776,780,881,27903,27904,41467,42536,51297</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/33767375$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Malik-Soni, Natasha</creatorcontrib><creatorcontrib>Shaker, Andrew</creatorcontrib><creatorcontrib>Luck, Helen</creatorcontrib><creatorcontrib>Mullin, Anne E.</creatorcontrib><creatorcontrib>Wiley, Ryan E.</creatorcontrib><creatorcontrib>Lewis, M. E. Suzanne</creatorcontrib><creatorcontrib>Fuentes, Joaquin</creatorcontrib><creatorcontrib>Frazier, Thomas W.</creatorcontrib><title>Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood</title><title>Pediatric research</title><addtitle>Pediatr Res</addtitle><addtitle>Pediatr Res</addtitle><description>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.</description><subject>Adult</subject><subject>Autism</subject><subject>Autism Spectrum Disorder - diagnosis</subject><subject>Autism Spectrum Disorder - psychology</subject><subject>Autism Spectrum Disorder - therapy</subject><subject>Autistic Disorder - diagnosis</subject><subject>Communication</subject><subject>Health Services Accessibility</subject><subject>Humans</subject><subject>Medicine</subject><subject>Medicine & Public Health</subject><subject>Pediatric Surgery</subject><subject>Pediatrics</subject><subject>Review</subject><subject>Review Article</subject><subject>Transition to Adult Care</subject><issn>0031-3998</issn><issn>1530-0447</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2022</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>BENPR</sourceid><recordid>eNp9kUtP3TAQRi1UBLeUP8CistRNNynjV5xsKlWIPiQkNnTVhTWxnXtNkxjshOr--5peHqWLrkbynDnj0UfICYMPDERzmiUTLVTAWQVM1qra7pEVU6I8SalfkRWAYJVo2-aQvM75GgqlGnlADoXQtRZarciPK7Q_hzCt6cbjMG8sJk_RWp8z7TCl4FOmfUw0TC7cBbfgkOmvMG8oLnPII-1THKkLuJ5iDpnOkaJbiihG94bs9wX3xw_1iHz_fH519rW6uPzy7ezTRWWllnPlUGvPleaS1S2z2Mu2AXC1hU5p57zraim0Re6VRHTolHWs0wIk8M6DFkfk4857s3Sjd9ZPc8LB3KQwYtqaiMG87ExhY9bxzui2FdCwInj_IEjxdvF5NmPI1g8DTj4u2XAFNdeFhoK--we9jkuaynmG17UG3cqGF4rvKJtizsn3T59hYO6zM7vsTMnO_MnObMvQ27_PeBp5DKsAYgfk0prWPj3v_o_2N_cUp6U</recordid><startdate>20220401</startdate><enddate>20220401</enddate><creator>Malik-Soni, Natasha</creator><creator>Shaker, Andrew</creator><creator>Luck, Helen</creator><creator>Mullin, Anne E.</creator><creator>Wiley, Ryan E.</creator><creator>Lewis, M. 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Suzanne</creator><creator>Fuentes, Joaquin</creator><creator>Frazier, Thomas W.</creator><general>Nature Publishing Group US</general><general>Nature Publishing Group</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>8C1</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>K9.</scope><scope>M0S</scope><scope>M1P</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>7X8</scope><scope>5PM</scope></search><sort><creationdate>20220401</creationdate><title>Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood</title><author>Malik-Soni, Natasha ; Shaker, Andrew ; Luck, Helen ; Mullin, Anne E. ; Wiley, Ryan E. ; Lewis, M. 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Suzanne ; Fuentes, Joaquin ; Frazier, Thomas W.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c474t-da77e257241691caf49800d6c0b57ddedb6437ca2e54aadad5cd1b730402be073</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2022</creationdate><topic>Adult</topic><topic>Autism</topic><topic>Autism Spectrum Disorder - diagnosis</topic><topic>Autism Spectrum Disorder - psychology</topic><topic>Autism Spectrum Disorder - therapy</topic><topic>Autistic Disorder - diagnosis</topic><topic>Communication</topic><topic>Health Services Accessibility</topic><topic>Humans</topic><topic>Medicine</topic><topic>Medicine & Public Health</topic><topic>Pediatric Surgery</topic><topic>Pediatrics</topic><topic>Review</topic><topic>Review Article</topic><topic>Transition to Adult Care</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Malik-Soni, Natasha</creatorcontrib><creatorcontrib>Shaker, Andrew</creatorcontrib><creatorcontrib>Luck, Helen</creatorcontrib><creatorcontrib>Mullin, Anne E.</creatorcontrib><creatorcontrib>Wiley, Ryan E.</creatorcontrib><creatorcontrib>Lewis, M. E. Suzanne</creatorcontrib><creatorcontrib>Fuentes, Joaquin</creatorcontrib><creatorcontrib>Frazier, Thomas W.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Public Health Database</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>ProQuest Central</collection><collection>ProQuest One Community College</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Pediatric research</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Malik-Soni, Natasha</au><au>Shaker, Andrew</au><au>Luck, Helen</au><au>Mullin, Anne E.</au><au>Wiley, Ryan E.</au><au>Lewis, M. E. Suzanne</au><au>Fuentes, Joaquin</au><au>Frazier, Thomas W.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood</atitle><jtitle>Pediatric research</jtitle><stitle>Pediatr Res</stitle><addtitle>Pediatr Res</addtitle><date>2022-04-01</date><risdate>2022</risdate><volume>91</volume><issue>5</issue><spage>1028</spage><epage>1035</epage><pages>1028-1035</pages><issn>0031-3998</issn><eissn>1530-0447</eissn><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.</abstract><cop>New York</cop><pub>Nature Publishing Group US</pub><pmid>33767375</pmid><doi>10.1038/s41390-021-01465-y</doi><tpages>8</tpages><oa>free_for_read</oa></addata></record> |
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subjects | Adult Autism Autism Spectrum Disorder - diagnosis Autism Spectrum Disorder - psychology Autism Spectrum Disorder - therapy Autistic Disorder - diagnosis Communication Health Services Accessibility Humans Medicine Medicine & Public Health Pediatric Surgery Pediatrics Review Review Article Transition to Adult Care |
title | Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood |
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