• Autism
  • About Us
  • Ways to Give
    • Participate
      • Toys R Us Canada Play packs
      • World Autism Month
        • Meet Ileana
        • Meet Lindsay
        • Meet Mackenna
        • Meet Daud
        • Meet Griffin
        • Meet Dr. Catherine G.
        • Meet Wanda Deschamps
        • Meet Jackie McMillan
        • Meet Steven Atme
        • Meet Jack Baranoff
        • Meet Olivier St-Amour
      • Autism Speaks Canada Walk
        • marchons
        • Current and Past Ambassadors
      • Autism Speaks Canada bubly Smile Day
      • Autism Speaks Canada Virtual Dog Walk & Auction
      • Game On with Autism Speaks Canada
      • Giving Tuesday
      • Facebook Fundraisers
      • Fundraise Your Way
      • Team Up!
      • One-Time Gifts
      • Monthly Giving
      • Honour Someone Special
      • Support an Event Participant
      • Birthdays with Echoage
      • Estate and Tax Smart Giving
      • Donate a Car
    • Become a Partner
      • Meet Our Partners
        • Gifted Canada
        • Vancouver Foundation
        • McConnell Foundation
        • Azrieli Foundation
        • Scentsy Canada
        • Samsung Canada
        • Randstad
        • Metrocon Ready Mix Corp.
        • PepsiCo
        • dentalcorp
        • Cadillac Fairview
        • Cherry Hill
        • ToysRUs/BabiesRUs
        • Equitable Life of Canada
        • KRG
        • Cineplex
        • Kernels
        • NFP
        • Bank of Montreal
        • A Buyer's Choice
        • Echoage
        • Donate a Car
        • Canadian Heritage - Government of Canada
        • Globe Meats Fresh Market and Grill
        • Nutrience
      • Cash and In-Kind Donations
      • Cause Related Marketing
      • Corporate Teams
      • Event Hosting
      • Matching Gifts
      • Sponsorship
      • Corporate Volunteering
      • Workplace Giving
    • Volunteer
      • Volunteer Stories
    • Merchandise
  • Science, Services & Supports
    • Pandemic Canadian Autism Needs Assessment Results
    • COVID-19 Information and Resources by our Autism Response Team
      • Families & Caregivers Looking for Children Resources
      • Adults on the Spectrum Looking for Resources
      • Virtual Events for Everyone
      • Other Useful Links for Everyone
      • Surveys
    • Science
      • Science News
      • Grant Search
      • Apply for Grants or Fellowships
      • MSSNG
      • Autism Treatment Network
        • ATN@Work
      • Participate In Research
        • Post-Doctoral Research Fellowship in Developmental Pathways in Autism Spectrum Disorder (ASD)
        • Caring for the Caregiver
        • Kids Brain Health Network
        • Family Participation in Research
        • It Takes Brains
        • Interactive Autism Network
        • Holland Bloorview Kids Rehabilitation Hospital
        • University of Toronto
        • York University
      • Science Blogs
      • Science Digest
        • Spring 2018
    • Family Services
      • Family Services Community Grants
        • FSCG Grant Review Volunteers
      • Family Services Special Targeted Initiatives Grants
        • Integrated Services for Autism & Neurodevelopmental Disorders (ISAND)
        • Pacific Autism Family Network (PAFN)
      • Family Services Partnerships
        • Family Services Community Grants
        • Tablet Program
        • Sensory Friendly Screenings
        • Sensory Friendly Santa – Enjoy a Virtual Visit with Santa!
      • Worktopia
    • Resources
      • Apps
      • Technology Central
      • Going Out to Eat
      • Health & Wellness
      • Bullying
      • Wandering
      • Templates for Personalized Teaching Stories
      • Community Connections
      • My Job Chart
      • Resource Library
      • Glossary of Terms
      • Accessing Government Services
      • Your Religious Community
    • ASC Connect
  • News, Media Request & Contact Us
    • News
      • News
        • Autism Speaks Canada's statement about the Alek Minassian case and its misrepresentation of autism
        • ASC, CASDA, and MacART come together to present the Pandemic Canadian Autism Needs Assessment Survey Report
        • SickKids researchers find new genes and variations linked to autism using Autism Speaks' MSSNG data
        • Toys R Us Canada in partnership with Autism Speaks Canada is proud to launch discounted play packs
        • Olivier, Our Dog Walk Ambassador Is in the News
        • Covid-19, We Are in This Together
        • Advocates and researchers discuss solutions to reduce autism health care disparities
        • Justin Trudeau Announces Endorsement for Development of a National Autism Strategy
        • Join Us in Creating a Brighter Life on the Spectrum
        • Media Advisory: Trudeau Is Only Major Party Leader Not Committed To A National Autism Strategy
        • Large family-based study finds 80 percent of autism risk is from inherited genes
        • Autism Speaks Canada is excited to announce their new partnership with MKM group and Shattered Dreams Esports
        • Autism Speaks awards more than $4.7 million for autism research
        • Autism Speaks Canada is excited to announce their new partnership with bubly sparkling water beverage
        • Six Autism Speaks studies on 2018 list of top advances in autism
        • Senator Munson's Visit to McMaster May 21, 2019
        • Community Connections Inspire Samsung Canada and Autism Speaks Canada
        • Autism Speaks Canada's annual Walk comes to Waterloo this Sunday
        • Autism Speaks Canada's annual Walk comes to Toronto
        • Autism Speaks' MSSNG project reaches 10,000-genome milestone
        • The Canada Council for the Arts Reveals the 2019 Killam Program Winners
        • Light It up Blue With Autism Speaks Canada
        • Response to the Ontario Autism Program (OAP)
        • DNAstack and Autism Speaks® Announce Collaboration to Accelerate Scientific Discovery on One of the World's Largest Autism Genome Databases
        • Autism Speaks launches $1.5 million funding opportunity for treatment studies
        • Whole genome sequencing reveals new type of genetic influence on autism
        • Understanding the 2018 National Autism Spectrum Disorder Surveillance System (NASS) Report
        • Autism Speaks releases new strategic plan for science
        • World's largest autism genome databank adds more than 2,000 sequences
        • Support Rooted in Desire to Improve Lives
        • Samsung Canada, Silken Laumann and Autism Speaks Canada Invite Canadians to Learn the Love Spectrum
        • Your ATN@Work: Treating anxiety in children and teens with autism
        • Your ATN@Work: Recognizing anxiety in children and teens with autism
        • Expanding Service Options for Children and Youth with Autism
        • Tracing autism's trajectories could help explain its diversity
        • Gathering MSSNG Insights on Autism
        • Thomas Frazier to join Autism Speaks as Chief Science Officer
        • Study Aims to Crack Autism Code
        • Ontario Ombudsman has released the report, Nowhere to Turn
        • The Autism World: Choosing In
        • The Government of Canada wants your input as they develop accessibility legislation
        • The University of Windsor is looking for fathers across Canada
        • Autism Speaks MSSNG study expands understanding of autism's complex genetics.
        • Choices Markets to Host Fundraiser to Raise Awareness and Funds for Autism Speaks Canada
        • The Sinneave Family Foundation and Autism Speaks Canada Partner With Organizations Across Canada to Improve Employment Futures for Individuals With Autism Spectrum Disorder
        • Ontario Providing More Supports For Children With Autism
        • Autism Speaks ATN/AIR-P researchers present studies at IMFAR
        • More than 5,000 whole genome sequences now available for research into autism subtypes and personalized treatments
        • Spokesperson for the Minister answers FAQ's regarding Ontario Autism Program
        • Giving children roots and wings: the struggle to understand autism.
        • Information for families about changes to autism services for children & youth
        • Ontario Budget Announcement
        • Ontario government announces new Ontario Autism Program with investment of $333 million over the next five years
        • 'Aging Out': What happens when children with ASD get older?
        • PBS NewsHour Looks at MSSNG Genome Project
        • New Canada-U.S. Partnership Paves the Way for International Collaborations in Autism Research
        • Autism Speaks Launches MSSNG Portal for Open-Access Genomics Research
        • Choices Markets to Host Fundraiser to Raise Awareness and Funds for Autism Speaks Canada
        • Kinetic Sand Teams Up with Autism Speaks to Raise Awareness
        • Learning to better understand autism spectrum disorder
        • 2014 Family Services Community Grants Announcement
        • Cineplex and Autism Speaks to offer Sensory Friendly Screenings
        • Diversity in Developmental Trajectories in Kids with Autism Spectrum Disorder
        • Largest genome sequencing study finds surprises: siblings' autism may have different genetic causes
COVID-19 Information and Resources
  • EN
    • FR
  • A A
  • Accessibility
  • Donate Now
 
Autism Speaks EN Autism Speaks EN
  • Autism
  • About Us
  • Ways to Give
  • Science, Services & Supports
  • News, Media Request & Contact Us
  1. Home
  2. News, Media Request & Contact Us
  3. News
  4. News
  5. Advocates and researchers discuss solutions to reduce autism health care disparities
  • News
    • Autism Speaks Canada's statement about the Alek Minassian case and its misrepresentation of autism
    • ASC, CASDA, and MacART come together to present the Pandemic Canadian Autism Needs Assessment Survey Report
    • SickKids researchers find new genes and variations linked to autism using Autism Speaks' MSSNG data
    • Toys R Us Canada in partnership with Autism Speaks Canada is proud to launch discounted play packs
    • Olivier, Our Dog Walk Ambassador Is in the News
    • Covid-19, We Are in This Together
    • Advocates and researchers discuss solutions to reduce autism health care disparities
    • Justin Trudeau Announces Endorsement for Development of a National Autism Strategy
    • Join Us in Creating a Brighter Life on the Spectrum
    • Media Advisory: Trudeau Is Only Major Party Leader Not Committed To A National Autism Strategy
    • Large family-based study finds 80 percent of autism risk is from inherited genes
    • Autism Speaks Canada is excited to announce their new partnership with MKM group and Shattered Dreams Esports
    • Autism Speaks awards more than $4.7 million for autism research
    • Autism Speaks Canada is excited to announce their new partnership with bubly sparkling water beverage
    • Six Autism Speaks studies on 2018 list of top advances in autism
    • Senator Munson's Visit to McMaster May 21, 2019
    • Community Connections Inspire Samsung Canada and Autism Speaks Canada
    • Autism Speaks Canada's annual Walk comes to Waterloo this Sunday
    • Autism Speaks Canada's annual Walk comes to Toronto
    • Autism Speaks' MSSNG project reaches 10,000-genome milestone
    • The Canada Council for the Arts Reveals the 2019 Killam Program Winners
    • Light It up Blue With Autism Speaks Canada
    • Response to the Ontario Autism Program (OAP)
    • DNAstack and Autism Speaks® Announce Collaboration to Accelerate Scientific Discovery on One of the World's Largest Autism Genome Databases
    • Autism Speaks launches $1.5 million funding opportunity for treatment studies
    • Whole genome sequencing reveals new type of genetic influence on autism
    • Understanding the 2018 National Autism Spectrum Disorder Surveillance System (NASS) Report
    • Autism Speaks releases new strategic plan for science
    • World's largest autism genome databank adds more than 2,000 sequences
    • Support Rooted in Desire to Improve Lives
    • Samsung Canada, Silken Laumann and Autism Speaks Canada Invite Canadians to Learn the Love Spectrum
    • Your ATN@Work: Treating anxiety in children and teens with autism
    • Your ATN@Work: Recognizing anxiety in children and teens with autism
    • Expanding Service Options for Children and Youth with Autism
    • Tracing autism's trajectories could help explain its diversity
    • Gathering MSSNG Insights on Autism
    • Thomas Frazier to join Autism Speaks as Chief Science Officer
    • Study Aims to Crack Autism Code
    • Ontario Ombudsman has released the report, Nowhere to Turn
    • The Autism World: Choosing In
    • The Government of Canada wants your input as they develop accessibility legislation
    • The University of Windsor is looking for fathers across Canada
    • Autism Speaks MSSNG study expands understanding of autism's complex genetics.
    • Choices Markets to Host Fundraiser to Raise Awareness and Funds for Autism Speaks Canada
    • The Sinneave Family Foundation and Autism Speaks Canada Partner With Organizations Across Canada to Improve Employment Futures for Individuals With Autism Spectrum Disorder
    • Ontario Providing More Supports For Children With Autism
    • Autism Speaks ATN/AIR-P researchers present studies at IMFAR
    • More than 5,000 whole genome sequences now available for research into autism subtypes and personalized treatments
    • Spokesperson for the Minister answers FAQ's regarding Ontario Autism Program
    • Giving children roots and wings: the struggle to understand autism.

Donate Landing photo

COVID-19 Information and Resources

Advocates and researchers discuss solutions to reduce autism health care disparities

Autism patient navigator and parent Kim Kaiser advocates for needs assessments to drive health care delivery
Autism patient navigator and parent Kim Kaiser advocates for needs assessments to drive health care delivery.
While living on the Colville Reservation in Washington, Jim Ronyak and his family had the added burden of distance and travel expense to access autism services for their son.
Jim Ronyak & his family had the added burden of distance and travel expenses to access autism services for their son.

WASHINGTON (December 20, 2019) -- Jim Ronyak and his wife drove their son 176 miles, each way, every weekend to receive services when they lived on the Colville Reservation in Washington state. It cost them $15,000 a year – just in travel expenses – before they moved to an area with more services.

For Bin Feng, a parent support advocate in a Chinese immigrant community in New York City, cultural and social barriers keep many in his community from seeking support and advocating for their children.

“We have a social barrier because we came from a country where government controls everything, and schools can reject your child if they have special needs. You can’t disagree with the school,” Feng said. “Here, you have the right to fight for your children. This is why we love this country.”

Kim Kaiser, an autism patient navigator, sees how families with few or no resources, little support, and economic and physical barriers to getting appropriate care struggle with meeting their children’s needs. 

This reality existed for families in New York City, where she began her career in autism services, as well as the rural upstate New York region where she now lives and works. Each environment presents its own set of challenges for autistic people and their families, and those challenges are further complicated by racial, ethnic and cultural issues. 

“The memory of Emmett Till lives in every black mother. That fear is there. That fear is compounded when your child is autistic,” said Kaiser, referring to a well-known victim of a 1955 lynching who was just 14 years old. Kaiser also has a 13-year-old son with autism.

For Kaiser, understanding these unique needs across geographic areas, socioeconomic classes and demographic groups is what should be driving where and how the health care system delivers services.

The complex question of understanding who is not receiving quality, timely and culturally appropriate autism care – as well as how to fix these inequities – was the focus of the Autism Speaks Thought Leadership Conference on Health Equity in Washington, D.C., on Dec. 10 and 11.

“We can only start to tackle this problem by getting all stakeholders together to figure out how we can bring about more equitable health care for autistic people,” said Thomas W. Frazier, chief science officer for Autism Speaks.

Researchers presented some of the most current findings about these disparities, including the recognition that less than 20 percent of autism studies even report racial and ethnic information about the study participants. Of those that do, participants are overwhelmingly white and male.

By not evaluating how different treatments and supports perform in more diverse participants, many studies may be overlooking whether and how they are effective for nonwhite groups, according to several speakers.

Other researchers presented results from programs that are working on the local level and may serve as a model for scaling up to larger solutions in similar areas around the country. These programs include enhancing screening and early identification for underserved groups, developing culturally competent interventions for a diverse autism population, interventions for low-resource communities and supported employment programs.

“Most of the efforts are put on children K through 12, but there’s a world of us adults out here, too. We need other supports like jobs, job coaches, housing and opportunities for social interactions,” said Dennis Taylor, a graphic artist with autism who works with several advocacy groups, including ASPEN and Spectrum Works. “It was good to hear there ARE other agencies like Spectrum Works out there, hiring and training adults on the spectrum. Maybe they can work together for a stronger voice - and more funding.  I was really encouraged to see that more attention is being paid to minorities and people in geographically challenged areas.”

“Gathering perspectives here is critical to guiding our future work at Autism Speaks,” said Andy Shih, vice president of public health and inclusion and the meeting organizer. “We hope that the connections made here – among practicing physicians, autistic people and family members, front-line care coordinators and academics – will form the basis for community-informed research that ultimately enhances care and outcomes for people with autism.”

Contact Us
  • 2450 Victoria Park Avenue, Unit 400
    Toronto, ON M2J 4A2
  • Local: 416-362-6227
  • Toll Free: 1-888-362-6227
  • Fax: 416-362-6228
  • About
  • ASC Connect
  • Get Involved
  • Science, Services & Resources
  • Ways to Give
  • News
  • Media Request & Contact Us
Our Partners
Nutrience
Globe Meats Fresh Market and Grill
Canadian Heritage - Government of Canada
Donate a Car
Echoage
A Buyer's Choice
Bank of Montreal
NFP
Kernels
Cineplex
KRG
Equitable Life of Canada
ToysRUs/BabiesRUs
Cherry Hill
Cadillac Fairview
dentalcorp
PepsiCo
Metrocon Ready Mix Corp.
Randstad
Samsung Canada
  • © 2021 Autism Speaks Canada
  • Site Map
  • Privacy Policy