PosterPDF Available

Autistic Adults' Experiences with Therapies and Health Services: A Qualitative Study

  • May 2023
DOI:10.13140/RG.2.2.13116.10887
  • Conference: International Society for Autism Research
Authors:
Cassia L. McIntyre at Simon Fraser University
Cassia L. McIntyre
Troy Q. Boucher at Simon Fraser University
Troy Q. Boucher
Vivian Ly at Simon Fraser University
Vivian Ly
Nichole Scheerer at Wilfrid Laurier University
Nichole Scheerer
Show all 7 authorsHide
Download file PDFDownload file PDF
Read file
Download citation
INSAR 2023 REFERENC
ES.pdf
Content uploaded by Cassia L. McIntyre
Author content
All content in this area was uploaded by Cassia L. McIntyre on Apr 21, 2023
Content may be subject to copyright.
MCINTYRE – INSAR 2023 - THERAPIES & SERVIC
ES.pdf
Content uploaded by Cassia L. McIntyre
Author content
All content in this area was uploaded by Cassia L. McIntyre on Apr 21, 2023
Content may be subject to copyright.
References
1. Lai, M-C., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W., Szatmari, P., &
Ameis, S. H. (2019). Prevalence of co-occurring mental health diagnoses in the autism
population: A systematic review and meta-analysis. The Lancet Psychiatry, 6(10), 819-
829. https://doi.org/10.1016/S2215-0366(19)30289-5
2. Adams, D., & Young, K. (2020). A systematic review of the perceived barriers and
facilitators to accessing psychological treatment of mental health problems in individuals
on the autism spectrum. Review Journal of Autism and Developmental Disorders, 8, 436-
453. https://doi.org/10.1007/s40489-020-00226-7
3. Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019). ‘Something needs to
change’: Mental health experiences of young autistic adults in England. Autism, 23(2),
477-493. https://doi.org/10.1177/1362361318757048
4. Nicolaidis, C., Raymaker, D., McDonald, K., Dern, S., Boisclair, W. C., Ashkenazy, E.,
& Baggs, A. (2012). Comparison of healthcare experiences in autistic and non-autistic
adults: A cross-sectional online survey facilitated by an academic-community
partnership. Journal of General Internal Medicine, 28, 761-769.
https://doi.org/10.1007/s11606-012-2262-7
5. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative
Research in Psychology, 3(2), 77-101. https://doi.org/10.1191/1478088706qp063oa
6. Chapman, R., & Botha, M. (2023). Neurodivergence-informed therapy. Developmental
Medicine and Child Neurology, 65(3), 310-317. https://doi.org/10.1111/dmcn.15384
7. Darazsdi, Z., & Bialka, C. S. (2023). “Oh, you couldn’t be autistic”: Examining anti-
autistic bias and self-esteem in the therapeutic alliance. Autism, Advance Online
Publication, 1-11. https://doi.org/10.1177/13623613231154622
8. Mazurek, M. O., Pappagianopoulos, J., Brunt, S., Sadikova, E., Nevill, R., Menezes, M.,
& Harkins, C. (2023). A mixed methods study of autistic adults’ mental health therapy
experiences. Clinical Psychology and Psychotherapy, Advance Online Publication, 1-13.
https://doi.org/10.1002/cpp.2835
ResearchGate has not been able to resolve any citations for this publication.
A Systematic Review of the Perceived Barriers and Facilitators to Accessing Psychological Treatment for Mental Health Problems in Individuals on the Autism Spectrum
Article
Full-text available
  • Dec 2021
Individuals on the autism spectrum experience high rates of mental health issues. Meta-analyses indicate promising effects of psychological therapies but challenges remain in ensuring and supporting access. This systematic review identified 12 studies that report on the barriers and facilitators to accessing psychological treatments for mental health or emotional/behavioural challenges for individuals on the autism spectrum. The most commonly reported barrier was a lack of therapist knowledge or expertise in autism or an inability or unwillingness on the part of the therapist to tailor approaches to support the needs of those on the autism spectrum. Fewer studies identified facilitators to accessing services. The findings highlight avenues for improving access to mental health services for individuals on the autism spectrum.
View
Using thematic analysis in psychology
Article
Full-text available
Thematic analysis is a poorly demarcated, rarely acknowledged, yet widely used qualitative analytic method within psychology. In this paper, we argue that it offers an accessible and theoretically flexible approach to analysing qualitative data. We outline what thematic analysis is, locating it in relation to other qualitative analytic methods that search for themes or patterns, and in relation to different epistemological and ontological positions. We then provide clear guidelines to those wanting to start thematic analysis, or conduct it in a more deliberate and rigorous way, and consider potential pitfalls in conducting thematic analysis. Finally, we outline the disadvantages and advantages of thematic analysis. We conclude by advocating thematic analysis as a useful and flexible method for qualitative research in and beyond psychology.
View
Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership
Article
Full-text available
BACKGROUND Little is known about the healthcare experiences of adults on the autism spectrum. Moreover, autistic adults have rarely been included as partners in autism research. OBJECTIVE To compare the healthcare experiences of autistic and non-autistic adults via an online survey. METHODS We used a community-based participatory research (CBPR) approach to adapt survey instruments to be accessible to autistic adults and to conduct an online cross-sectional survey. We assessed preliminary psychometric data on the adapted scales. We used multivariate analyses to compare healthcare experiences of autistic and non-autistic participants. RESULTS Four hundred and thirty-seven participants completed the survey (209 autistic, 228 non-autistic). All adapted scales had good to excellent internal consistency reliability (alpha 0.82–0.92) and strong construct validity. In multivariate analyses, after adjustment for demographic characteristics, health insurance, and overall health status, autistic adults reported lower satisfaction with patient-provider communication (beta coefficient −1.9, CI −2.9 to −0.9), general healthcare self-efficacy (beta coefficient −11.9, CI −14.0 to −8.6), and chronic condition self-efficacy (beta coefficient −4.5, CI −7.5 to −1.6); higher odds of unmet healthcare needs related to physical health (OR 1.9 CI 1.1–3.4), mental health (OR 2.2, CI 1.3–3.7), and prescription medications (OR 2.8, CI 2.2–7.5); lower self-reported rates of tetanus vaccination (OR 0.5, CI 0.3–0.9) and Papanicolaou smears (OR 0.5, CI 0.2–0.9); and greater odds of using the emergency department (OR 2.1, CI 1.8–3.8). CONCLUSION A CBPR approach may facilitate the inclusion of people with disabilities in research by increasing researchers’ ability to create accessible data collection instruments. Autistic adults who use the Internet report experiencing significant healthcare disparities. Efforts are needed to improve the healthcare of autistic individuals, including individuals who may be potentially perceived as having fewer disability-related needs.
View
"Oh, you couldn't be autistic": Examining anti-autistic bias and self-esteem in the therapeutic alliance
Article
  • Feb 2023
Presently, most mental health practitioners in the United States are educated, trained, and employed in a system focused on curing or changing autistic people. As a result, mental health practitioners may exhibit anti-autistic bias—any form of bias that degrades, devalues, or others autistic people or traits —when engaged with autistic clients. Since the collaborative relationship between therapist and client, termed the “therapeutic alliance,” is often viewed as the most influential element of therapeutic effectiveness, our phenomenological study examined 14 autistic adults’ experiences with anti-autistic bias in the therapeutic alliance and the relationship they perceive it has on their self-esteem. Findings, determined through thematic analysis, reveal implicit, unintentional bias was manifested through clinical assumptions about autism, explicit, overt bias was expressed through feelings of intentional harm, and repair of self-esteem was shown through positive alliances. Based on the findings of this study, we offer recommendations to help mental health practitioners and mental health practitioner training programs better serve autistic clients. This study addresses a significant gap in current research on anti-autistic bias in the mental health field and the overall well-being of autistic individuals. Lay Abstract Many mental health practitioners in the United States are trained to cure or change autistic people. Some of these mental health practitioners may show anti-autistic bias when working with autistic clients. Anti-autistic bias is any kind of bias that degrades, devalues, or others autistic people or autistic traits. Anti-autistic bias is especially problematic when mental health practitioners and clients are engaged in the therapeutic alliance, which is the collaborative relationship between a therapist and client. The therapeutic alliance is one of most important parts of an effective therapeutic relationship. Our interview-based study examined 14 autistic adults’ experiences with anti-autistic bias in the therapeutic alliance and the relationship they felt it has on their self-esteem. Results from this research showed that some mental health practitioners expressed hidden and unrealized bias when working with autistic clients, such as making assumptions about what it means to be autistic. Results also showed that some mental health practitioners were intentionally biased and openly harmful to their autistic clients. Both forms of bias negatively affected participant self-esteem. Based on the findings of this study, we offer recommendations to help mental health practitioners and mental health practitioner training programs better serve autistic clients. This study addresses a significant gap in current research on anti-autistic bias in the mental health field and the overall well-being of autistic individuals.
View
A Mixed Methods Study of Autistic Adults’ Mental Health Therapy Experiences
Article
  • Jan 2023
Autistic adults are at high risk for co‐occurring mental health problems and need access to effective and appropriate mental health treatment. However, the relative effectiveness or acceptability of specific mental health strategies among autistic adults has not been previously examined. The current study sought to gain a deeper understanding of autistic adults’ experiences and preferences regarding mental health strategies using a mixed methods approach. Autistic adults (n = 303, ages 21‐77) completed online surveys and open‐ended questions about their mental health and therapy experiences. Most (88.8%) had participated in therapy, with cognitive approaches being the most common. Regarding overall therapy experiences, qualitative analyses revealed 4 primary themes and 9 subthemes. Therapist acceptance and understanding were seen as critical for therapy success and many participants felt that therapy was helpful for personal growth. However, many participants found that talking in session was challenging and noted that aspects of the session format affected their ability to engage in therapy. Regarding specific strategies, 4 cross‐cutting themes and 8 strategy‐specific subthemes were identified. A variety of strategies were seen as helpful for reducing anxiety and improving mood. However, autistic adults reported trouble generalizing strategies to daily life and found some techniques to be difficult to implement due, in part, to their unique autism‐related needs. As the first study of its kind, the results underscore the importance of establishing a safe and accepting therapeutic relationship, providing accommodations to support communication needs, and considering individual differences and preferences when selecting mental health strategies for autistic clients.
View
Neurodivergence‐informed therapy
Article
  • Sep 2022
The neurodiversity movement is a social movement that emerged among autistic self‐advocates. It has since spread and has been joined by many with diagnoses of attention‐deficit/hyperactivity disorder, dyslexia, and developmental coordination disorder among others. By reconceptualizing neurodiversity as part of biodiversity, neurodiversity proponents emphasize the need to develop an ‘ecological’ society that supports the conservation of neurological minorities through the construction of ecological niches—that is, making space for all. This is an alternative to the drive to eliminate diversity through attempts to ‘treat’ or ‘cure’ neurodivergence. So far, neurodiversity theory has not been formally adapted for psychotherapeutic frameworks, and it is not the role of the therapist to make systemic changes to societal organization. Still, there is room for fruitfully drawing on a neurodiversity perspective for therapists working with neurodivergent people in clinical settings. Here, we draw on the example of autism and synthesize three key themes to propose the concept of neurodivergence‐informed therapy. First, the reconceptualization of dysfunction as relational rather than individual. Second, the importance of neurodivergence acceptance and pride, and disability community and culture to emancipate neurodivergent people from neuro‐normativity. Third, the need for therapists to cultivate a relational epistemic humility regarding different experiences of neurodivergence and disablement.
View
Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis
Article
  • Aug 2019
Background: Co-occurring mental health or psychiatric conditions are common in autism, impairing quality of life. Reported prevalences of co-occurring mental health or psychiatric conditions in people with autism range widely. Improved prevalence estimates and identification of moderators are needed to enhance recognition and care, and to guide future research. Methods: In this systematic review and meta-analysis, we searched MEDLINE, Embase, PsycINFO, Scopus, Web of Science, and grey literature for publications between Jan 1, 1993, and Feb 1, 2019, in English or French, that reported original research using an observational design on the prevalence of co-occurring mental health conditions in people with autism and reported confirmed clinical diagnoses of the co-occurring conditions and autism using DSM or ICD criteria. For co-occurring mental health conditions reported with at least 15 datapoints (studies), we assessed risk of bias and we determined pooled estimates of prevalence for different co-occurring conditions in autism using random-effects models, and descriptively compared these with prevalence estimates for the general population from the literature (post hoc). We investigated heterogeneity in prevalence estimates using random-effects meta-regression models. This systematic review is registered with PROSPERO, CRD42018103176. Findings: Of 9746 unique studies identified, 432 were selected for full-text review. 100 studies were eligible for inclusion in our qualitative synthesis, of which 96 were included in our meta-analyses. 11 categories of co-occurring conditions were investigated, of which eight conditions were included in the meta-analyses and three were descriptively synthesised (ie, trauma and stressor-related disorders, substance-related and addictive disorders, and gender dysphoria). From our meta-analyses, we found overall pooled prevalence estimates of 28% (95% CI 25-32) for attention-deficit hyperactivity disorder; 20% (17-23) for anxiety disorders; 13% (9-17) for sleep-wake disorders; 12% (10-15) for disruptive, impulse-control, and conduct disorders; 11% (9-13) for depressive disorders; 9% (7-10) for obsessive-compulsive disorder; 5% (3-6) for bipolar disorders; and 4% (3-5) for schizophrenia spectrum disorders. Estimates in clinical sample-based studies were higher than in population-based and registry-based studies, and these estimates were mostly higher than those in the general population (post hoc). Age, gender, intellectual functioning, and country of study were associated with heterogeneity in prevalence estimates, yet remaining heterogeneity not explained was still substantial (all I2 >95%). Interpretation: Co-occurring mental health conditions are more prevalent in the autism population than in the general population. Careful assessment of mental health is an essential component of care for all people on the autism spectrum and should be integrated into clinical practice. Funding: Academic Scholars Awards, Department of Psychiatry, University of Toronto; O'Brien Scholars Program, Slaight Family Child and Youth Mental Health Innovation Fund, and The Catherine and Maxwell Meighen Foundation via the Centre for Addiction and Mental Health Foundation.
View
‘Something needs to change’: Mental health experiences of young autistic adults in England
Article
There is a high incidence and prevalence of mental health problems among young people, with several barriers to help-seeking noted in this group. High rates of mental health problems have also been reported in children and adults on the autism spectrum. Taken together, young autistic people may be a particularly vulnerable group when it comes to mental health. Yet, there has been remarkably little work on the mental health needs and experiences of young autistic adults (16–25 years). Adopting a community-based participatory research (CBPR) approach – in which academic researchers and young autistic adults collaborated in an equitable research partnership – we explored young autistic people’s experiences of mental health problems and their perspectives on the support they sought, if any, for these problems. A total of 130 young autistic adults took part in the research: 109 completed an online survey and 21 took part in detailed interviews. The results highlight how young autistic people find it difficult to evaluate their mental health, experience high levels of stigma and often face severe obstacles when trying to access mental health support. The findings also demonstrate how listening to – and learning from – young autistic people is crucial in ensuring that their mental health needs are met.
View