Skip to main content
SpringerLink
Log in

Do Different Kinds of Minds Need Different Kinds of Services? Qualitative Results from a Mixed-Method Survey of Service Preferences of Autistic Adults and Parents

  • Original Paper
  • Published:
Neuroethics Aims and scope Submit manuscript

Abstract

Many services can assist autistic people, such as early intervention, vocational services, or support groups. Scholars and activists debate whether such services should be autism-specific or more general/inclusive/mainstream. This debate rests on not only clinical reasoning, but also ethical and social reasoning about values and practicalities of diversity and inclusion. This paper presents qualitative results from a mixed-methods study. An online survey asked autistic adults and parents of autistic people of any age in Canada, the United States, Italy, France, and Germany what types of services they prefer (autism-specific, mixed-disability, or general/inclusive/mainstream). This paper presents the advantages and disadvantages of different service types, identified through inductive thematic coding and organized into higher-level themes focusing on clinical, structural, societal, interpersonal, and personal aspects of services. Autism-specific services were praised for addressing autism needs, helping clinically, and providing interpersonal benefits of others understanding autism; general services were praised for inclusion, helping clinically, community obligations and awareness, and social skills development. Looking at the interaction of these different aspects in respondent narratives nuances debates about autism-specificity, with a complex interplay between clinical, interpersonal, and societal aspects. Clinical and social perspectives are not necessarily separate and opposed, but intertwined based on different understandings of inclusion. Compared to parents, adults focused more on harm/safety issues, enjoyment, and stereotyping among other themes, attending to personal themes. These findings do not identify one best service type, but suggest that determining the right service in a given context may be informed by definitions of and goals about inclusion.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Availability of Data and Material

Due to the nature of this research, participants of this study did not agree for their data to be shared publicly, so data are not available.

Code Availability

N/A.

Notes

  1. In this paper, we primarily use identity-first language, in keeping with suggested practices for avoiding ableist language [15]

  2. Applied behavior analysis is a form of therapy originating from operant conditioning principles and commonly recommended for autistic children. It involves an analysis of antecedents, behaviors, and consequences, and the implementation of various structured interventions aimed at behavior change. Self-advocates have criticized applied behavior analysis both for specific techniques (e.g., use of aversives) and general principles (e.g., pursuing “normal” appearances) [29].

  3. This term is used in some European countries, in this sample often by German-speaking participants, to refer to a specific kind of bullying of an individual by a group, especially but not exclusively in the workplace [30].

References

  1. American Psychiatric Association. 2013. Diagnostic and statistical manual of mental disorders (DSM-5®). Arlington VA: American Psychiatric Publishing.

  2. Grandin, Temple, and Richard Panek. 2013. The autistic brain: Thinking across the spectrum. Boston: Houghton Mifflin Harcourt.

    Google Scholar 

  3. Boutot, E. Amanda., and Diane P. Bryant. 2005. Social integration of students with autism in inclusive settings. Education and Training in Developmental Disabilities 40 (1): 14–23.

    Google Scholar 

  4. Carter, Erik W., Lynn G. Sisco, Lissa Brown, Dana Brickham, and Zainab A. Al-Khabbaz. 2008. Peer interactions and academic engagement of youth with developmental disabilities in inclusive middle and high school classrooms. American Journal on Mental Retardation 113 (6): 479–494. https://doi.org/10.1352/2008.113:479-494.

    Article  Google Scholar 

  5. Kasari, Connie, Jill Locke, Amanda Gulsrud, and Erin Rotheram-Fuller. 2011. Social networks and friendships at school: Comparing children with and without ASD. Journal of Autism and Developmental Disorders 41 (5): 533–544. https://doi.org/10.1007/s10803-010-1076-x.

    Article  Google Scholar 

  6. Locke, Jill, Eric H. Ishijima, Connie Kasari, and Nancy London. 2010. Loneliness, friendship quality and the social networks of adolescents with high-functioning autism in an inclusive school setting. Journal of Research in Special Educational Needs 10 (2): 74–81. https://doi.org/10.1111/j.1471-3802.2010.01148.x.

    Article  Google Scholar 

  7. Ochs, E., T. Kremer-Sadlik, O. Solomon, and K.G. Sirota. 2001. Inclusion as social practice: Views of children with autism. Social Development 10 (3): 399–419. https://doi.org/10.1111/1467-9507.00172.

    Article  Google Scholar 

  8. Orsmond, Gael I., Marty Wyngaarden Krauss, and Marsha Mailick Seltzer. 2004. Peer relationships and social and recreational activities among adolescents and adults with autism. Journal of Autism and Developmental Disorders 34 (3): 245–256. https://doi.org/10.1023/b:jadd.0000029547.96610.df.

    Article  Google Scholar 

  9. Owen-DeSchryver, Jamie S., Edward G. Carr, Sanja I. Cale, and Audrey Blakeley-Smith. 2008. Promoting social interactions between students with autism spectrum disorders and their peers in inclusive school settings. Focus on Autism and Other Developmental Disabilities 23 (1): 15–28. https://doi.org/10.1177/1088357608314370.

    Article  Google Scholar 

  10. Panerai, Simonetta, Marinella Zingale, Grazia Trubia, Maria Finocchiaro, Rosa Zuccarello, Raffaele Ferri, and Maurizio Elia. 2009. Special education versus inclusive education: The role of the TEACCH program. Journal of Autism and Developmental Disorders 39 (6): 874–882. https://doi.org/10.1007/s10803-009-0696-5.

    Article  Google Scholar 

  11. Chamak, Brigitte, and Béatrice Bonniau. 2014. Neurodiversité: une autre façon de penser. In Neurosciences et Société: enjeux des savoirs et pratiques sur le cerveau, eds. Brigitte Chamak and B. Moutaud, 211–230. Paris: Armand Colin.

  12. Cascio, M. Ariel. 2020. Neurodiversity as a conceptual lens and topic of cross-cultural ctudy. In Culture, mind, and brain: Emerging concepts, models, and applications, eds. L., Kirmayer CW, S. Kitayama, R. Lemelson, and C.A. Cummings, 477–493. Cambridge UK: Cambridge University Press.

  13. Sen, Amartya. 2002. Why health equity? Health Economics 11 (8): 659–666. https://doi.org/10.1002/hec.762.

    Article  Google Scholar 

  14. Sen, Amartya. 1989. Development as capability expansion. Journal of Development Planning 19: 41–58.

    Google Scholar 

  15. Bottema-Beutel, Kristen, Steven K. Kapp, Jessica Nina Lester, Noah J. Sasson, and Brittany N. Hand. 2021. Avoiding ableist language: Suggestions for autism researchers. Autism in Adulthood 3 (1): 18–29. https://doi.org/10.1089/aut.2020.0014.

    Article  Google Scholar 

  16. Rosqvist, Bertilsdotter, Charlotte Brownlow Hanna, and Lindsay O’Dell. 2013. Mapping the social geographies of autism–online and off-line narratives of neuro-shared and separate spaces. Disability & Society 28 (3): 367–379. https://doi.org/10.1080/09687599.2012.714257.

    Article  Google Scholar 

  17. Schneid, Iris, and Aviad E. Raz. 2020. The mask of autism: Social camouflaging and impression management as coping/normalization from the perspectives of autistic adults. Social Science & Medicine 248: 112826. https://doi.org/10.1016/j.socscimed.2020.112826.

    Article  Google Scholar 

  18. Ryan, Sara, and Ulla Räisänen. 2008. “It’s like you are just a spectator in this thing”: Experiencing social life the ‘aspie’way. Emotion Space and Society 1 (2): 135–143. https://doi.org/10.1016/j.emospa.2009.02.001.

    Article  Google Scholar 

  19. Rios, Clarice, and Barbara Costa Andrada. 2015. The changing face of autism in Brazil. Culture Medicine & Psychiatry 39 (2): 213–234. https://doi.org/10.1007/s11013-015-9448-5.

    Article  Google Scholar 

  20. Cascio, M. Ariel. 2020. “Asperger’s syndrome does not exist”: The limits of brain-based identity discourses around Asperger’s syndrome and autism in Italy. BioSocieties 16: 196–224. https://doi.org/10.1057/s41292-020-00191-8.

    Article  Google Scholar 

  21. Autistic Self Advocacy Network (ASAN). 2011. Keeping the promise: Self advocates defining the meaning of community living. Washington DC: Autistic Self Advocacy Network. https://autisticadvocacy.org/wp-content/uploads/2012/02/KeepingthePromise-SelfAdvocatesDefiningtheMeaningofCommunity.pdf. Accessed 7 Feb 2022.

  22. Vivian, Amanda Forest, Shannon Des Roches Rosa, Savannah Logsdon-Breakstone, Cara Liebowitz, Star Ford, Steven Kapp, Matt Carey, and Julia Bascom. n.d. "Neurodiversity FAQ: A neurodiversity facts and myths primer." Thinking Person's Guide to Autism (blog). https://tinyurl.com/NeurodiversityPrimer. Accessed 7 Apr 2021.

  23. Carey, Allison C., Pamela Block, and Richard K. Scotch. 2019. Sometimes allies: Parent-led disability organizations and social movements. Disability Studies Quarterly 39 (1): 11–12. https://doi.org/10.18061/dsq.v39i1.6281.

  24. Cascio, M. Ariel., and Eric Racine. 2022. Autism service preferences of parents and autistic adults in five countries. Autism Research. https://doi.org/10.1002/aur.2667.

    Article  Google Scholar 

  25. Dedoose Version 8.3.41. 2020. Web application for managing, analyzing, and presenting qualitative and mixed method research data. Los Angeles, CA: SocioCultural Research Consultants, LLC.

  26. O’Reilly, K. 2005. Ethnographic methods. Oxfordshire: Routledge.

    Google Scholar 

  27. Emerson, Robert M., Rachel I. Fretz, and Linda L. Shaw. 2011. Writing ethnographic fieldnotes. Chicago: The University of Chicago Press.

  28. LeCompte, M., and J. Schensul. 2013. Analysis and interpretation of ethnographic data: A mixed methods approach. Lanham, MD: AltaMira Press.

  29. Sparrow, M. 2014. "ABA." Unstrange Mind (blog). http://unstrangemind.com/aba. Accessed 4 Feb 2022.

  30. Molé, Noelle J. 2010. Precarious subjects: Anticipating neoliberalism in northern Italy’s workplace. American Anthropologist 112 (1): 38–53. https://doi.org/10.1111/j.1548-1433.2009.01195.x.

    Article  Google Scholar 

  31. Solomon, Olga, and Nancy Bagatell. 2010. Introduction: Autism: Rethinking the possibilities. Ethos 38 (1): 1–7. https://doi.org/10.1111/j.1548-1352.2009.01078.x.

  32. Kapp, Steven K., Kristen Gillespie-Lynch, Lauren E. Sherman, and Ted Hutman. 2013. Deficit difference or both? Autism and neurodiversity. Developmental Psychology 49 (1): 59–71. https://doi.org/10.1037/a0028353.

    Article  Google Scholar 

  33. Bagatell, Nancy. 2010. From cure to community: Transforming notions of autism. Ethos 38 (1): 33–55. https://doi.org/10.1111/j.1548-1352.2009.01080.x.

    Article  Google Scholar 

  34. Orsini, Michael. 2009. Contesting the autistic subject: Biological citizenship and the autism/autistic movement. In Critical interventions in the ethics of healthcare: Challenging the principle of autonomy in bioethics, ed. D. Holmes and S.J. Murray, 115–130. Burlington, VT: Ashgate Publishing Company.

    Google Scholar 

  35. Petryna, A. 2011. Life exposed: Biological citizens after chernobyl. New Jersey: Princeton University Press.

    Google Scholar 

  36. Cascio, M. Ariel. 2012. Neurodiversity: Autism pride among mothers of children with autism spectrum disorders. Intellectual and Developmental Disabilities 50 (3): 273–283. https://doi.org/10.1352/1934-9556-50.3.273.

  37. Friend, John M. 2014. The biopolitics of policy-making: Medical activism in the century of the brain. New Political Science 36 (1): 32–51. https://doi.org/10.1080/07393148.2013.859902.

  38. Hart, Brendan. 2014. Autism parents & neurodiversity: Radical translation joint embodiment and the prosthetic environment. BioSocieties 9 (3): 284–303. https://doi.org/10.1057/biosoc.2014.20.

    Article  Google Scholar 

  39. Fein, Elizabeth. 2020. Living on the spectrum: Autism and youth in community. New York: NYU Press.

    Book  Google Scholar 

  40. Zablotsky, Benjamin, Matthew J. Maenner, and Stephen J. Blumberg. 2019. Geographic disparities in treatment for children with autism spectrum disorder. Academic Pediatrics 19 (7): 740–747. https://doi.org/10.1016/j.acap.2019.02.013.

  41. Weiss, J. A., M. Whelan, and C. McMorris. 2014. Autism in Canada: National needs assessment survey for families, individuals with autism spectrum disorder and professionals. https://www.casda.ca/wp-content/uploads/2019/02/NationalNeedsAssessmentSurvey_July-30.pdf. Accessed 4 Feb 2022.

  42. Borgi, Marta, Valentina Ambrosio, Daniele Cordella, Flavia Chiarotti, and Aldina Venerosi. 2019. Nationwide survey of healthcare services for autism spectrum disorders (ASD) in Italy. Advances in Neurodevelopmental Disorders 3 (3): 306–318. https://doi.org/10.1007/s41252-019-00113-1.

  43. Salomone, Erica, Štěpánka Beranová, Frédérique. Bonnet-Brilhault, Marlene Briciet Lauritsen, Magdalena Budisteanu, Jan Buitelaar, Ricardo Canal-Bedia, Gabriella Felhosi, Sue Fletcher-Watson, and Christine Freitag. 2016. Use of early intervention for young children with autism spectrum disorder across Europe. Autism 20 (2): 233–249. https://doi.org/10.1177/1362361315577218.

    Article  Google Scholar 

  44. Perry, Alexandra. 2012. Autism beyond pediatrics: Why bioethicists ought to rethink consent in light of chronicity and genetic identity. Bioethics 26 (5): 236–241. https://doi.org/10.1111/j.1467-8519.2011.01952.x.

    Article  Google Scholar 

  45. Raz, Aviad, Karin R. Jongsma, Nitzan Rimon-Zarfaty, Elisabeth Späth, Bosmat Bar-Nadav, Ella Vaintropov, and Silke Schicktanz. 2018. Representing autism: Challenges of collective representation in German and Israeli associations for and of autistic people. Social Science & Medicine 200: 65–72. https://doi.org/10.1016/j.socscimed.2018.01.024.

    Article  Google Scholar 

  46. Autistic Self Advocacy Network. 2021. Start here: A guide for parents of autistic kids. Washington, DC: The Autistic Press. https://autisticadvocacy.org/wp-content/uploads/2021/04/booklet-interior-4.1.pdf. Accessed 4 Feb 2022.

Download references

Acknowledgements

Preliminary results from this study were presented at the American Anthropological Association Annual Meeting in 2018 (Cascio, M.A., Crafa, D., and E. Racine. 2018. Entanglements of Care in Autism Services in Europe and North America) and 2017 (Cascio, M.A. and E. Racine. 2017. The Biopolitics of Specificity: Autism Service Preferences in Europe and North America), both as oral presentations. This project was funded by a Kids Brain Health Network Core Award, the NeuroEthics Excellence and Societal Innovation Core (NESIC; Racine co-PI). Dr. Cascio was additionally funded by the Angelo-Pizzagalli Scholarship of the IRCM Foundation and the Social Sciences and Humanities Research Council of Canada’s Banting Postdoctoral Fellowship. Dr. Racine was additionally funded by a FRQ-S senior scholar career award. We acknowledgme the substantial contributions of Daina Crafa in qualitative analysis and contributions to an earlier draft of this paper. We thank Wade Bittle (Plain Language Strategist, Convergent Knowledge, ckhealth@shaw.ca, Calgary, Alberta) for reviewing the survey for plain language and autism-friendly accessibility. We also thank the following people who contributed to this study via translation, back-translation, community feedback, and/or research assistance: John Aspler, Morgane Aubineau, Aline Bogossian, Roxanne Caron, Dominique Cartier, Noha Elsherbini, Audrey Francouer, Laura Gilmour, Maria Imoli, Marianne Kania, Alice Larontonda, Ms. Lukas, Friedrich Nolte, Cristina Panisi, Sebastian Sattler, Anouk Sugar, and Enrico Valtellina. We also thank current and former members of the Pragmatic Health Ethics Research Unit for consistent feedback throughout this project, especially Nicole Padley and Wren Boehlen for reviewing the final draft, and sincerely apologize for any aknowledgments we have missed for assistance received over this lengthy and complex endeavor.

Funding

This project was funded by a Kids Brain Health Network Core Award, the NeuroEthics Excellence and Societal Innovation Core (NESIC; Racine co-PI). Dr. Cascio was additionally funded by the Angelo-Pizzagalli Scholarship of the IRCM Foundation and the Social Sciences and Humanities Research Council of Canada’s Banting Postdoctoral Fellowship. Dr. Racine was additionally funded by a FRQ-S senior scholar career award.

Author information

Authors and Affiliations

  1. Central Michigan University College of Medicine, Mt. Pleasant, MI, USA

    M. Ariel Cascio

  2. Pragmatic Health Ethics Research Unit, Institut de Recherches Cliniques de Montréal, Montréal, QC, Canada

    Eric Racine

  3. McGill University, 845 Sherbrooke St W, Montreal, QC, H3A 0G4, Canada

    Eric Racine

  4. Université de Montréal, 2900 Edouard Montpetit Blvd, Montreal, QC, H3T 1J4, Canada

    Eric Racine

Authors
  1. M. Ariel Cascio
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Eric Racine
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

M. Ariel Cascio conceived of the study and designed it with the supervision of Eric Racine. Cascio led the collection of data with the supervision of Racine. Cascio and Racine both made substantial contributions to data analysis and interpretation – Cascio as one of two coders and Racine as code tie-breaker, and both involved in the iterative interpretive process. Both authors drafted and critically revised this manuscript, approve this version of the manuscript to be submitted and published, and agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Corresponding author

Correspondence to M. Ariel Cascio.

Ethics declarations

Ethics Approval

The Research Ethics Committee of the Institut de recherches cliniques de Montréal approved this study.

Consent to Participate

Respondents provided informed consent online.

Consent for Publication

No identifying details are published.

Conflicts of Interest/Competing interests

The authors report no conflicts of interest.

Additional information

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file1 (DOCX 899 KB)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Cascio, M., Racine, E. Do Different Kinds of Minds Need Different Kinds of Services? Qualitative Results from a Mixed-Method Survey of Service Preferences of Autistic Adults and Parents. Neuroethics 15, 13 (2022). https://doi.org/10.1007/s12152-022-09487-x

Download citation

  • Received:

  • Accepted:

  • Published:

  • DOI: https://doi.org/10.1007/s12152-022-09487-x

Keywords

Search

Navigation