Autistic Adult and Non-Autistic Parent Advocates: Bridging the Divide

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

About the autistic author marker

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Rottier, H. & Gernsbacher, M. A. (2020). Autistic Adult and Non-Autistic Parent Advocates: Bridging the Divide. In Disability Alliances and Allies (pp. 155-166). Emerald Publishing Limited. https://doi.org/10.1108/s1479-354720200000012011 · ISBN : 9781839093227

Publication date: 27 Oct 2020 Added to AutiHub: 24 Sep 2026 Type: Book chapter Article language: English
Publisher source (DOI) OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
2
Publication authors identified as autistic
1 / 2 (50.0%)
  1. Helen Rottier *
  2. Morton Ann Gernsbacher

Abstract

Abstract Purpose: Due to the developmental nature of autism, which is often diagnosed in preschool or elementary school-aged children, non-autistic parents of autistic children typically play a prominent role in autism advocacy. However, as autistic children become adults and adult diagnoses of autism continue to rise, autistic adults have played a more prominent role in advocacy. The purpose of this chapter is to explore the histories of adult and non-autistic parent advocacy in the United States and to examine the points of divergence and convergence. Approach: Because of their different perspectives and experiences, advocacy by autistic adults and non-autistic parents can have distinctive goals and conflicting priorities. Therefore, the approach we take in the current chapter is a collaboration between an autistic adult and a non-autistic parent, both of whom are research scholars. Findings: The authors explore the divergence of goals and discourse between autistic self-advocates and non-autistic parent advocates and offer three principles for building future alliances to bridge the divide between autistic adults and non-autistic parents. Implications: The chapter ends with optimism that US national priorities can bridge previous gulfs, creating space for autistic adult and non-autistic parent advocates to work together in establishing policies and practices that improve life for autistic people and their families and communities.

Related publications

These links indicate preprints, protocols, published versions, or related records identified in AutiHub.

Associated preprints

Confirmed Reliability level: Medium Manual

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 3 Oct 2026 01:01.

Cited references
80
With a DOI
36
Without a DOI, from raw bibliography text
42
7 / 80 (8.8%) cited references include at least one author identified as autistic.
References with data to complete
8 / 80 (10.0%)
References with detected author names
72 / 80 (90.0%)
Without detected author names
8
Without a structured title
8
Without a stable identifier
40
References with raw author names still to review
8
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
129
From DOI or external metadata
129
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
8
43 / 129 (33.3%) names are linked to an author already present in AutiHub. 86 / 129 (66.7%) names are not yet linked.
Names linked to a person identified as autistic
10 / 129 (7.8%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 10 / 43 (23.3%). Distinct people identified as autistic: 10 / 113 (8.8%).
  1. M. Remi Yergeau * (2009). Circle Wars: Reshaping the Typical Autism Essay . Disability Studies Quarterly, 30(1). The Ohio State University Libraries.
    Type: Article DOI: 10.18061/dsq.v30i1.1063 OpenAlex: https://openalex.org/W1499800695
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  2. Ackerman (n.d.). A letter from Lisa Ackerman, Founder . TACA: The Autism Community in Action.
    Type: Other
    Crossref
  3. Christina Nicolaidis (2012). What Can Physicians Learn from the Neurodiversity Movement? AMA Journal of Ethics, 14(6), 503-510. American Medical Association (AMA).
    Type: Article DOI: 10.1001/virtualmentor.2012.14.6.oped1-1206 OpenAlex: https://openalex.org/W2142098199
    AutiHub · Documentation center Crossref OpenAlex OpenCitations
  4. Anne McGuire (2012). Representing Autism: A Sociological Examination of Autism Advocacy . Atlantis, 35(2), 62-71. Consortium Erudit.
    Type: Article DOI: 10.7202/1119966ar OpenAlex: https://openalex.org/W1555981989
    Crossref OpenAlex
  5. Ashkenazy (n.d.). Parents in the autism world . Autistic Self Advocacy Network.
    Type: Other
    Crossref
  6. Morton Ann Gernsbacher (2009). A Conspicuous Absence of Scientific Leadership: The Illusory Epidemic of Autism . In Leadership and discovery (pp. 157-169). Palgrave Macmillan US.
    Type: Book chapter DOI: 10.1057/9780230101630_10 OpenAlex: https://openalex.org/W2505187841
    Crossref OpenAlex OpenCitations
  7. Jim Sinclair * (2010). Being Autistic Together . Disability Studies Quarterly, 30(1). The Ohio State University Libraries.
    Type: Article DOI: 10.18061/dsq.v30i1.1075 OpenAlex: https://openalex.org/W1565875767
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  8. Autism Society. (n.d.). https://www.autism-society.org/about-the-autism-society/history
    Type: Other
    Crossref
  9. Michael Orsini (2012). Autism, Neurodiversity and the Welfare State: The Challenges of Accommodating Neurological Difference . Canadian Journal of Political Science, 45(4), 805-827. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s000842391200100x OpenAlex: https://openalex.org/W1972817143
    Crossref OpenAlex OpenCitations
  10. Joseph F Kras (2009). The “Ransom Notes” Affair: When the Neurodiversity Movement Came of Age . Disability Studies Quarterly, 30(1), 1065. The Ohio State University Libraries.
    Type: Article DOI: 10.18061/dsq.v30i1.1065 OpenAlex: https://openalex.org/W1592140660
    Crossref OpenAlex OpenCitations
  11. Autism Speaks. (n.d.). https://www.autismspeaks.org/about-us .
    Type: Other
    Crossref
  12. Morton Ann Gernsbacher , Adam R Raimond , Jennifer L. Stevenson , Jilana S Boston , Bev Harp (2018). Do puzzle pieces and autism puzzle piece logos evoke negative associations? Autism, 22(2), 118-125. SAGE Publications.
    Type: Article DOI: 10.1177/1362361317727125 OpenAlex: https://openalex.org/W2747740855
    Crossref OpenAlex OpenCitations
  14. Autistic Self Advocacy Network. (n.d.). https://autisticadvocacy.org/about-asan/our-history .
    Type: Other
    Crossref
  16. Katherine Gotham , Alison R Marvin , Julie Lounds Taylor , Zachary Warren , Connie M Anderson , Paul A Law et al. (2015). Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data . Autism, 19(7), 794-804. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315583818 OpenAlex: https://openalex.org/W1927816754
    Crossref OpenAlex OpenCitations
  17. Nancy Bagatell (2010). From cure to community: Transforming notions of autism . Ethos, 38(1), 33. Wiley.
    Type: Article DOI: 10.1111/j.1548-1352.2009.01080.x OpenAlex: https://openalex.org/W2085448344
    Crossref OpenAlex OpenCitations
  19. Constance Holden (1990). What's Holding Up "Aversives" Report? Science, 249(4972), 980-981. American Association for the Advancement of Science (AAAS).
    Type: Article DOI: 10.1126/science.2396100 OpenAlex: https://openalex.org/W1965616756
    Crossref OpenAlex OpenCitations
  21. Gábor Petri , Julie Beadle-Brown , Jill Bradshaw (2017). “More Honoured in the Breach than in the Observance”—Self-Advocacy and Human Rights . Laws, 6(4), 26. MDPI AG.
    Type: Article DOI: 10.3390/laws6040026 OpenAlex: https://openalex.org/W2770742306
    Crossref OpenAlex OpenCitations
  22. Brigitte Chamak (2008). Autism and social movements: French parents’ associations and international autistic individuals’ organisations . Sociology of Health & Illness, 30(1), 76-96. Wiley.
    Type: Article DOI: 10.1111/j.1467-9566.2007.01053.x OpenAlex: https://openalex.org/W1971659941
    Crossref OpenAlex OpenCitations
  23. Blume (n.d.). Autistics are communicating in cyberspace . The New York Times.
    Type: Other
    Crossref
  24. Jan Walmsley , Liz Tilley , Sue Dumbleton , Janet Bardsley (2017). The changing face of parent advocacy: a long view . Disability & Society, 32(9), 1366-1386. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2017.1322496 OpenAlex: https://openalex.org/W2618706835
    Crossref OpenAlex OpenCitations
  25. Blume (n.d.). Neurodiversity . The Atlantic.
    Type: Other
    Crossref
  26. Morton Ann Gernsbacher (2017). Editorial Perspective: The use of person‐first language in scholarly writing may accentuate stigma . Journal of Child Psychology and Psychiatry, 58(7), 859-861. Wiley.
    Type: Article DOI: 10.1111/jcpp.12706 OpenAlex: https://openalex.org/W2626162561
    Crossref OpenAlex OpenCitations
  27. Karin E. van den Bosch , Anna Krzeminska , Eun Young Song , Lineke B. E. van Hal , Mitzi M. Waltz , Hannah Ebben et al. (2019). Nothing about us, without us: A case study of a consumer-run organization by and for people on the autism spectrum in the Netherlands . Journal of Management & Organization, 25(04), 464-480. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/jmo.2018.54 OpenAlex: https://openalex.org/W2891890146
    Crossref OpenAlex OpenCitations
  28. Ronnie Janoff-Bulman , Amelie Werther (2008). The Social Psychology of Respect: Implications for Delegitimization and Reconciliation . In Social psychology of inter-group reconciliation: From violent conflict to peaceful co-existence (pp. 145-170). Oxford University Press.
    Type: Book chapter DOI: 10.1093/acprof:oso/9780195300314.003.0008 OpenAlex: https://openalex.org/W2495623174
    Crossref OpenAlex OpenCitations
  29. KL Broad (2011). Coming out for Parents, Families and Friends of Lesbians and Gays: From support group grieving to love advocacy . Sexualities, 14(4), 399-415. SAGE Publications.
    Type: Article DOI: 10.1177/1363460711406792 OpenAlex: https://openalex.org/W2025805459
    Crossref OpenAlex OpenCitations
  30. Adam Rosenblatt (2018). Autism, Advocacy Organizations, and Past Injustice . Disability Studies Quarterly, 38(4). The Ohio State University Libraries.
    Type: Article DOI: 10.18061/dsq.v38i4.6222 OpenAlex: https://openalex.org/W2905861729
    Crossref OpenAlex OpenCitations
  31. Brown (n.d.). Protesting autism speaks . Autistic Hoya.
    Type: Other
    Crossref
  32. Allison C. Carey , Pamela Block , Richard K. Scotch (2019). Sometimes Allies: Parent-Led Disability Organizations and Social Movements . Disability Studies Quarterly, 39(1). The Ohio State University Libraries.
    Type: Article DOI: 10.18061/dsq.v39i1.6281 OpenAlex: https://openalex.org/W2919740869
    Crossref OpenAlex OpenCitations
  33. Cynthia L. Conley (2011). Learning About a Child's Gay or Lesbian Sexual Orientation: Parental Concerns About Societal Rejection, Loss of Loved Ones, and Child Well Being . Journal of Homosexuality, 58(8), 1022-1040. Informa UK Limited.
    Type: Article DOI: 10.1080/00918369.2011.598409 OpenAlex: https://openalex.org/W2087786437
    Crossref OpenAlex OpenCitations
  34. Burby (2014). Editor's letter . Autism Parenting Magazine.
    Type: Other
    Crossref
  35. Tom Shakespeare (1993). Disabled people's self-organisation: a new social movement? Disability, Handicap & Society, 8(3), 249-264. Informa UK Limited.
    Type: Article DOI: 10.1080/02674649366780261 OpenAlex: https://openalex.org/W2090835334
    Crossref OpenAlex OpenCitations
  36. Irene Carter , Rob Wilson (2006). Reflections on Face-to-Face and Online Self-Help Group Participation: Comparing the Views of Persons with Autism with Those of Parents Speaking for Their Autistic Children . International Journal of Self Help and Self Care, 5(4), 353-369. Portico.
    Type: Article DOI: 10.2190/sh.5.4.g OpenAlex: https://openalex.org/W2334145751
    Crossref OpenAlex OpenCitations
  37. Jeni L. Wahlig (2015). Losing the Child They Thought They Had: Therapeutic Suggestions for an Ambiguous Loss Perspective with Parents of a Transgender Child . Journal of GLBT Family Studies, 11(4), 305-326. Informa UK Limited.
    Type: Article DOI: 10.1080/1550428x.2014.945676 OpenAlex: https://openalex.org/W2131223648
    Crossref OpenAlex OpenCitations
  38. Chamak (2013). Autism and social movements in France: Exploring cross-cultural differences . Worlds of autism: Across the spectrum of neurological difference, 239.
    Type: Other
    Crossref
  39. Lorcan Kenny , Caroline Hattersley , Bonnie Molins , Carole Buckley , Carol Povey , Elizabeth Pellicano (2016). Which terms should be used to describe autism? Perspectives from the UK autism community . Autism, 20(4), 442-462. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315588200 OpenAlex: https://openalex.org/W2227393071
    Crossref OpenAlex OpenCitations
  42. Michael L. Wehmeyer , Hank Bersani , Ray Gagne (2000). Riding the Third Wave . Focus on Autism and Other Developmental Disabilities, 15(2), 106-115. SAGE Publications.
    Type: Article DOI: 10.1177/108835760001500206 OpenAlex: https://openalex.org/W2165188513
    Crossref OpenAlex OpenCitations
  43. Dejean (n.d.). The White House turned blue for “autism awareness.” That's actually bad for autistic people . Mother Jones.
    Type: Other
    Crossref
  44. Mitzi Waltz , Karin van den Bosch , Hannah Ebben , Lineke van Hal , Alice Schippers (2015). Autism self-advocacy in the Netherlands: past, present and future . Disability & Society, 30(8), 1174-1191. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2015.1090954 OpenAlex: https://openalex.org/W2204082832
    Crossref OpenAlex OpenCitations
  45. Dekker, M. (1998). On our own terms: Emerging autistic culture. Autism99 Internet Conference. http://www.autscape.org/2015/programme/handouts/Autistic-Culture-07-Oct-1999.pdf
    Type: Other
    Crossref
  46. Dana S. Dunn , Erin E. Andrews (2015). Person-first and identity-first language: Developing psychologists’ cultural competence using disability language. American Psychologist, 70(3), 255-264. American Psychological Association (APA).
    Type: Article DOI: 10.1037/a0038636 OpenAlex: https://openalex.org/W2332517055
    Crossref OpenAlex OpenCitations
  47. Thomas G. Ryan , Sarah Griffiths (2015). Self-advocacy and its impacts for adults with developmental disabilities . Australian Journal of Adult Learning, 55(1), 31.
    Type: Article OpenAlex: https://openalex.org/W2257340810
    Crossref OpenAlex
  48. Endow (n.d.). Realities of being an autistic therapist . Spectrum.
    Type: Other
    Crossref
  49. Joyce Davidson , Michael Orsini (2013). Autism and Social Movements in France . In Worlds of Autism (pp. 239-258). University of Minnesota Press.
    Type: Book chapter DOI: 10.5749/minnesota/9780816688883.003.0011 OpenAlex: https://openalex.org/W2479120618
    OpenAlex OpenCitations
  50. Jennifer L. Stevenson , Bev Harp , Morton Ann Gernsbacher (2011). Infantilizing Autism . Disability Studies Quarterly, 31(3), 1. The Ohio State University Libraries.
    Type: Article DOI: 10.18061/dsq.v31i3.1675 OpenAlex: https://openalex.org/W4246781226
    Crossref OpenAlex OpenCitations
  51. Jessica M. F. Hughes (2015). Changing conversations around autism: A critical, action implicative discourse analysis of U.S. neurodiversity advocacy online . CU Scholar (University of Colorado Boulder).
    Type: Article OpenAlex: https://openalex.org/W2526197133
    OpenAlex
  52. Harmon (n.d.). How about not ‘curing’ us, some autistics are pleading . The New York Times.
    Type: Other
    Crossref
  53. Hughes, J. M. F. (2015). Changing conversations around autism: A critical, action implicative discourse analysis of U. S. Neurodiversity advocacy online. Communication Graduate Theses & Dissertations, 52. https://scholar.colorado.edu/comm_gradetds/52
    Type: Other
    Crossref
  54. Hughes (n.d.). Autistic people spark twitter fight against Autism Speaks . BuzzFeed News.
    Type: Other
    Crossref
  55. Kador (2009). Effective apology: Mending fences, building bridges, and restoring trust . Effective apology: Mending fences, building bridges, and restoring trust.
    Type: Other
    Crossref
  56. Kaufman (n.d.). Campaign on childhood mental illness succeeds at being provocative . The New York Times.
    Type: Other
    Crossref
  57. Eric London (1997). A psychiatrist's journey from parent to founder of research advocacy organization . Psychiatric Times.
    Type: Article OpenAlex: https://openalex.org/W2936212898
    Crossref OpenAlex
  58. Kaufman (n.d.). Ransom-note ads about children's health are canceled . The New York Times.
    Type: Other
    Crossref
  59. Thomas B. Linehan (2014). Neurodiversity and Disability: An Analysis of Social Movement Framing in Dialog Between Parents and Autistic Self-Advocates .
    Type: Article OpenAlex: https://openalex.org/W3036280327
    OpenAlex
  60. Linehan, T. B. (2014). Neurodiversity and disability: An analysis of social movement framing in dialog between parents and autistic self-advocates. Theses & Dissertations, 130. https://digitalcommons.plymouth.edu/etd/130
    Type: Other
    Crossref
  61. Luterman (n.d.). What it's like to be David . NOS Magazine.
    Type: Other
    Crossref
  62. Ne’eman (n.d.). Victory! The end of the ransom notes campaign . Autistic Self Advocacy Network.
    Type: Other
    Crossref
  63. Ne’eman (n.d.). An urgent call to action: Tell NYU Child Study Center to abandon stereotypes against people with disabilities . Autistic Self Advocacy Network.
    Type: Other
    Crossref
  64. Owlia (n.d.). Autism Speaks: They don't speak for the spectrum . Triangle.
    Type: Other
    Crossref
  65. Pellicano (2013). A future made together: Shaping autism research in the UK . A future made together: Shaping autism research in the UK.
    Type: Other
    Crossref
  66. Rimland (1964). Infantile autism: The syndrome and its implications for a neural theory of behavior . Infantile autism: The syndrome and its implications for a neural theory of behavior.
    Type: Other
    Crossref
  67. Robison (n.d.). I resign my roles at Autism Speaks . Look Me in the Eye.
    Type: Other
    Crossref
  68. Shulman (n.d.). Child Study Center cancels autism ads . Washington Post.
    Type: Other
    Crossref
  69. Sinclair (n.d.). Autobiographies . Bit.Listserv.Autism.
    Type: Other
    Crossref
  70. Sinclair (2012). Don't mourn for us . Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(1).
    Type: Other
    Crossref
  71. Starr (1986). Foreword . Beyond acceptance: Parents of lesbians & gays talk about their experiences, xi.
    Type: Other
    Crossref
  72. Taylor-Parker (n.d.). The future of autism Speaks . Autistic Future.
    Type: Other
    Crossref
  73. Thibault (2014). Can autistics redefine autism? The cultural politics of autistic activism . Trans-Scripts, 4, 57.
    Type: Other
    Crossref
  74. U. S. Department of Health and Human Services. (2009). Autism spectrum disorder research 2008 portfolio analysis report. Interagency Autism Coordinating Committee. https://iacc.hhs.gov/publications/portfolio-analysis/2008/portfolio_analysis_2008.pdf
    Type: Other
    Crossref
  75. U. S. Department of Health and Human Services. (2019). 2016 autism spectrum disorder research portfolio analysis report. Interagency Autism Coordinating Committee. https://iacc.hhs.gov/publications/portfolio-analysis/2016/portfolio_analysis_2016.pdf
    Type: Other
    Crossref
  76. Wallis (n.d.). ‘I Am Autism’: An advocacy video sparks protest . Time.
    Type: Other
    Crossref
  77. Wang (n.d.). Ads about kids' mental health problems draw fire . Wall Street Journal.
    Type: Other
    Crossref
  78. Wang (n.d.). NYU bows to critics and pulls ransom-note ads . Wall Street Journal.
    Type: Other
    Crossref
  79. WikiHow (n.d.). How to boycott autism Speaks . WikiHow.
    Type: Other
    Crossref
  80. Yergeau (2018). Authoring autism: On rhetoric and neurological queerness . Authoring Autism: On Rhetoric and Neurological Queerness., 140.
    Type: Other
    Crossref