{"id":405101,"date":"2026-03-20T14:38:49","date_gmt":"2026-03-20T18:38:49","guid":{"rendered":"https:\/\/www.yorku.ca\/yfile\/?p=405101"},"modified":"2026-03-20T14:38:52","modified_gmt":"2026-03-20T18:38:52","slug":"study-reveals-autism-care-barriers-for-marginalized-families","status":"publish","type":"post","link":"https:\/\/www.yorku.ca\/yfile\/2026\/03\/20\/study-reveals-autism-care-barriers-for-marginalized-families\/","title":{"rendered":"快播视频 reveals autism care barriers for marginalized families"},"content":{"rendered":"\n

SDG Month feature<\/h4>\n\n\n\n

Research led by 快播视频 draws attention to inequities in Canada\u2019s public health care system affecting immigrant and racialized families raising children on the autism spectrum.<\/h3>\n\n\n\n
<\/div>\n\n\n\n

Conducted by a team at York\u2019s Faculty of Health<\/a> in partnership with the community organization SMILE Canada-Support Services, the research centres on the voices of family caregivers who are often overlooked in autism research or policy discussions despite facing disproportionate barriers to care.<\/p>\n\n\n\n

The study, published in International Journal of Environmental Research and Public Health<\/em><\/a>, investigates the lived experiences of caregivers from marginalized communities to understand the social determinants affecting access to care and autism-related services.<\/p>\n\n\n

\n
\"Farah
Farah Ahmad<\/figcaption><\/figure>\n<\/div>\n\n\n

Findings show that fragmented systems, stigma and structural barriers create long-term strain for individuals and families in caregiving roles, highlighting the need for public health policy reform across Canada.<\/p>\n\n\n\n

\u201cCaregiving does not happen in isolation,\u201d says Farah Ahmad<\/strong>, professor in the School of Health Policy and Management. \u201cThis research shows how families are navigating multiple systems at once \u2013 health care, education, immigration and social services \u2013 and how gaps in those systems directly affect family well\u2011being.\u201d<\/p>\n\n\n\n

Autism is a lifelong neurodevelopmental condition affecting approximately one in 50 children and youth, aged one to 17 years. While support needs vary, parents and family members often take on complex and ongoing responsibilities soon after diagnosis, including care coordination, advocacy and emotional, and financial assistance, Ahmad notes.<\/p>\n\n\n\n

The researchers argue that when caregivers\u2019 needs go unmet, the effects extend beyond individual families. Chronic stress, burnout and declining mental health among caregivers can influence service use, employment and long\u2011term health outcomes, making caregiving a pressing public health concern rather than a private challenge.<\/p>\n\n\n\n

\u201cWhen family caregivers are stretched to the limit, the impact shows up across systems,\u201d says Ahmad. \u201cHealth and education policies need to recognize caregivers as central partners in care.\u201d<\/p>\n\n\n\n

The study collected data using PhotoVoice, a participatory research method that allowed participants to document their experiences through photographs and personal narratives.<\/p>\n\n\n\n

Immigrant and racialized family caregivers took part in four in\u2011person sessions that included guided photo\u2011taking, group reflection and collaborative analysis. York researchers worked alongside caregivers to identify key themes and refine the findings, positioning participants as knowledge holders rather than research subjects.<\/p>\n\n\n\n

\u201cThis approach aligns with our commitment to community\u2011engaged research,\u201d Ahmad says. \u201cIt allowed caregivers to show, in concrete ways, what gaps look like in daily life.\u201d<\/p>\n\n\n\n

The\u00a0PhotoVoice\u00a0study was led by graduate student\u00a0Jesse Sam<\/strong>,\u00a0which\u00a0contributed to his major research paper for his master\u2019s in health policy and equity. The team also included\u00a0Tareq Khalaf<\/strong>\u00a0(doctoral student in health) and\u00a0Anjana\u00a0Sathies<\/strong>\u00a0(master's student in critical disability studies).\u00a0<\/p>\n\n\n\n

The group identified seven interconnected themes that reflect the complexity of caregiving: family and child needs; physical and emotional burden on caregivers; school support gaps; stigma and discrimination; overall journey with barriers; transitions and uncertainty; and \u201ctwo sides of a coin:\u201d isolation and strength, loneliness and hope.<\/p>\n\n\n\n

School systems were flagged as a major pressure point, requiring caregivers to spend significant time advocating for support. For families facing other obstacles, such as language and systemic, these challenges were compounded.<\/p>\n\n\n\n

\u201cWhat stood out was how persistent and layered these barriers were,\u201d says Ahmad. \u201cFamilies were not dealing with a single obstacle, but a series of interconnected challenges that accumulated over time.\u201d<\/p>\n\n\n\n

Participants also described racism and discrimination within health and social service systems, along with financial strain tied to therapy costs, lost work time and administrative burden.<\/p>\n\n\n\n

The study calls for policy changes that would improve equity in autism support: coordinated, culturally responsive health and education systems that reduce administrative burden, address stigma and assist families across key transitions.<\/p>\n\n\n\n

Those who participated in the PhotoVoice study reported feeling validated and empowered, and expressed interest in sharing the findings with broader audiences.<\/p>\n\n\n\n

Ahmad notes that by positioning caregivers\u2019 experiences as evidence, the research challenges policymakers and practitioners to rethink how autism care is delivered and who is included in decision\u2011making processes.<\/p>\n","protected":false},"excerpt":{"rendered":"

SDG Month feature>><\/b> 快播视频 researchers centre voices of underrepresented caregivers to understand inequities in autism services and inform policy change.<\/p>\n","protected":false},"author":2386,"featured_media":405179,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_kad_blocks_custom_css":"","_kad_blocks_head_custom_js":"","_kad_blocks_body_custom_js":"","_kad_blocks_footer_custom_js":"","footnotes":""},"categories":[25,22],"tags":[29,33,6,7,63,21,47,60,23,15,12,24,4],"yfileauthor":[204],"qualifier":[198],"yfile-author":[304],"tags-to-show":[145,177,147,167,162,154,158,146,159],"workflow":[],"class_list":["post-405101","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-editors-picks","category-research-innovation","tag-community","tag-equity","tag-faculty","tag-fgs","tag-faculty-of-health","tag-research","tag-sdg-10","tag-sdg-16","tag-sdg-3","tag-sdg","tag-students","tag-wellbeing","tag-yfile","yfileauthor-yfilestaff","qualifier-by","yfile-author-ashley-goodfellow-craig","tags-to-show-community","tags-to-show-equity-diversity-inclusion-edi","tags-to-show-faculty","tags-to-show-faculty-of-graduate-studies","tags-to-show-faculty-of-health","tags-to-show-research","tags-to-show-sdg","tags-to-show-students","tags-to-show-wellbeing"],"acf":{"internal_publish_date":"20260323","original_image":""},"yoast_head":"\n快播视频 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