Méta-synthèse des perspectives à la première personne d'adultes autistes concernant les services liés à la santé mentale

Titre original en anglais : Meta-Synthesis of Autistic Adults’ First-Person Perspectives About Mental Health-Related Services

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Andoni, L., Eisenhower, A., Gudknecht, J., & Levitt, H. M. (2024). Meta-Synthesis of Autistic Adults’ First-Person Perspectives About Mental Health-Related Services. Autism in Adulthood, 8(1), 27-46. https://doi.org/10.1089/aut.2023.0167

Date de publication: 26/08/2024 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
4
Auteur·ices de la publication identifié·es comme autistes
1 / 4 (25,0 %)
  1. Lana Andoni
  2. Abbey Eisenhower
  3. Juliette Gudknecht *
  4. Heidi M. Levitt

Résumé

Contexte : Les adultes autistes présentent un risque élevé de troubles de santé mentale concomitants, notamment la dépression, l'anxiété, l'automutilation non suicidaire et la suicidalité. Les services existants ne répondent pas adéquatement aux besoins de santé mentale des adultes autistes. Afin de mieux éclairer des soins fondés sur des données probantes, il est nécessaire de synthétiser et d'intégrer les perspectives des personnes autistes concernant les services liés à la santé mentale qu'elles reçoivent. Méthodes : En utilisant la méthode PRISMA, 40 études sur les expériences à la première personne d'adultes autistes concernant les services liés à la santé mentale ont satisfait aux critères d'inclusion de cette revue systématique. Des recherches dans les bases de données électroniques PsycINFO et PubMed ont été menées jusqu'en juillet 2023. Les études devaient être publiées, qualitatives ou à méthodes mixtes, et devaient inclure des auto-évaluations d'adultes autistes ayant eu des expériences avec des services liés à la santé mentale. Les articles originaux ont été examinés, codés et analysés conformément à une approche modifiée de théorie ancrée constructiviste critique. Résultats : Douze études ont interrogé les participants sur leurs expériences et leurs besoins concernant les services généraux, et 28 études ont exploré les expériences des participants avec des services spécifiques, tels que des interventions spécifiques en santé mentale, des groupes de soutien ou des interventions axées sur le social. Nos analyses des 40 études ont révélé cinq catégories concernant les perspectives des clients autistes sur leurs services de santé mentale : (1) être davantage adaptés à leurs besoins individuels, (2) fournir davantage d'aménagements tant dans le format que dans le contenu, (3) inclure davantage de soutien pratique, en plus du soutien émotionnel, (4) que les prestataires possèdent à la fois des connaissances sur l'hétérogénéité de l'autisme et de l'humilité dans leur travail, et (5) encourager et accueillir un sentiment d'identité et de communauté autistes. Conclusion : Nos résultats proposent des changements pratiques que les cliniciens peuvent apporter pour améliorer leurs services et créer une meilleure expérience pour les adultes autistes. Il est à noter que nos analyses soulignent que trop souvent, les services que reçoivent les personnes autistes se concentrent sur leur changement, plutôt que sur le changement de l'environnement ou l'adaptation à celui-ci. La diversité des participants constituait une limite dans l'ensemble de nos études (les participants étaient majoritairement blancs, vivaient dans un pays occidental et ne présentaient pas de déficience intellectuelle concomitante), et les recherches futures devraient assurer une plus grande diversité des perspectives à la première personne. Résumé communautaire Pourquoi cette question est-elle importante ? Les adultes autistes rencontrent fréquemment des difficultés de santé mentale telles que la dépression et l'anxiété. Malheureusement, les adultes autistes ne sont pas satisfaits de leurs soins et signalent que leurs expériences avec les services de santé mentale ne sont ni compatibles ni efficaces pour répondre à leurs besoins. Quel était l'objectif de cette étude ? Afin d'améliorer la qualité des soins, il est important de comprendre ce que les adultes autistes souhaitent de leurs services de santé mentale. Notre objectif est de fournir des recommandations pratiques aux cliniciens en santé mentale travaillant avec des adultes autistes. Qu'ont fait les chercheurs ? Nous avons mené une revue systématique de 40 études ayant recueilli des expériences de première main de personnes autistes concernant les services liés à la santé mentale. Les études incluaient des perspectives à la première personne d'autistes sur les besoins généraux en matière de services de santé mentale, ainsi que des perspectives sur des services spécifiques liés à la santé mentale, tels que les services de conseil ou psychiatriques, les groupes de soutien ou les groupes de psychothérapie. Quels ont été les résultats de l'étude ? À partir de notre analyse, nous avons identifié plusieurs catégories pour répondre à la question : que souhaitent les adultes autistes de leurs services liés à la santé mentale ? 1. Les services de santé mentale généralistes devraient être accessibles aux clients autistes, car les clients autistes ne sont souvent pas admissibles à de tels services. Les cliniciens devraient adapter les services aux compétences, aux besoins et à l'âge du client autiste, et non les fonder sur des stéréotypes concernant l'autisme. 2. Les cliniciens devraient proposer des aménagements pour répondre aux besoins spécifiques des clients autistes, notamment les suivants : Besoins sensoriels : apporter des modifications à l'environnement, telles qu'aux lumières ou aux sons, ou proposer des options de télésanté. Attentes temporelles : proposer des séances plus longues ou un plus grand nombre de séances, compte tenu de la difficulté à s'habituer à un nouveau clinicien. Besoins de communication : proposer des options pour s'adapter à différents styles de communication, comme l'utilisation d'informations écrites ou visuelles ou le ralentissement du débit de parole. 3. Les clients autistes peuvent avoir besoin d'un soutien pragmatique, tel que remplir un formulaire, comprendre les avantages liés à l'emploi ou résoudre des situations domestiques problématiques. Les cliniciens devraient faire preuve de souplesse pour soutenir les besoins pratiques de leurs clients ou les orienter vers des services adaptés au soutien pratique. 4. Les cliniciens devraient connaître l'autisme et avoir l'humilité de respecter les expériences vécues du client autiste. Les cliniciens devraient comprendre l'hétérogénéité de l'autisme. 5. Les cliniciens devraient adopter une approche fondée sur les forces dans le cadre du paradigme de la neurodiversité, et non une approche fondée sur le modèle médical, afin d'aider les clients à explorer et à comprendre leur identité autiste. Les groupes de soutien par les pairs autistes et les groupes animés par un clinicien neurodivergent incarnent souvent mieux cette approche. Que ces résultats ajoutent-ils à ce qui était déjà connu ? Un constat important est que les adultes autistes souhaitent des services qui se concentrent sur l'exploration de leurs identités et la gestion des facteurs de stress liés au fait de vivre avec un handicap dans une société capacitiste, plutôt que sur la modification des caractéristiques de l'adulte. Quelles sont les faiblesses potentielles de l'étude ? L'échantillon de population inclus dans l'étude n'était pas très diversifié. Les participants étaient majoritairement blancs, vivaient dans un pays occidental et ne présentaient pas de déficience intellectuelle concomitante. Comment ces résultats aideront-ils les adultes autistes maintenant ou à l'avenir ? Nos résultats proposent des recommandations pratiques aux cliniciens afin que les adultes autistes puissent bénéficier d'une expérience de service plus utile et plus valorisante.

Background: Autistic adults are at high risk of co-occurring mental health disorders, including depression, anxiety, nonsuicidal self-injury, and suicidality. Existing services are not adequately meeting autistic adults’ mental health needs. To better inform evidence-based care, there is a need to synthesize and integrate autistic people’s perspectives about the mental health-related services they receive. Methods: Using the PRISMA method, 40 studies of first-person experiences for autistic adults about mental health-related services met inclusion for this systematic review. Electronic database searches in PsycINFO and PubMed were conducted up to July 2023. Studies needed to be published, qualitative or mixed-methods, and had to include self-report of autistic adults who had experiences with mental health-related services. Original articles were reviewed, coded, and analyzed in line with a modified critical constructivist grounded theory approach. Results: Twelve studies inquired about participants’ experiences and needs with general services, and 28 studies explored participants’ experiences with specific services such as specific mental health interventions, support groups, or social-focused interventions. Our analyses of the 40 studies revealed five categories with regard to autistic clients’ perspectives on their mental health services: (1) to be more tailored to their individual needs, (2) to provide more accommodations in both format and content, (3) to include more practical support, in addition to emotional support, (4) for providers to have both knowledge of the heterogeneity of autism and humility in their work, and (5) to encourage and embrace a sense of autistic identity and community. Conclusion: Our results offer practical changes that clinicians can make to improve their services and create a better experience for autistic adults. Notably, our analyses highlight that too often the services autistic people receive focus on changing them, rather than on changing or coping with the environment. Diversity in participants was a limitation across our studies (participants were majority White, in a Western-based country, and did not have a co-occurring intellectual disability), and future research should ensure greater diversity in first-person perspectives. Community Brief Why is this an important issue? Autistic adults frequently experience mental health challenges such as depression and anxiety. Unfortunately, autistic adults are not satisfied with their care and report that their experiences with mental health services are not compatible or effective for what they need. What was the purpose of this study? To improve the quality of care, it is important to understand what autistic adults want from their mental health services. Our purpose is to provide practical recommendations to mental health clinicians working with autistic adults. What did the researchers do? We conducted a systematic review of 40 studies that gathered firsthand experiences of autistic individuals about mental health-related services. The studies included autistic first-person perspectives on general mental health service needs, as well as perspectives on specific mental health-related services such as counseling or psychiatric services, support groups, or psychotherapy groups. What were the results of the study? From our analysis, we identified several categories to answer the question: what do autistic adults want from their mental health-related services? 1. Mainstream mental health services should be made available to autistic clients as autistic clients often do not qualify for such services. Clinicians should tailor services to autistic client’s skill set, needs, and age, and not based on stereotypes of autism. 2. Clinicians should offer accommodations to address the unique needs for autistic clients, including the following: Sensory needs: make changes in the environment such as lights, sounds, or offer telehealth options. Time expectations: offer longer duration of sessions or greater number of sessions given the difficulty of getting used to a new clinician. Communication needs: offer options to accommodate different communication styles such as using written or visual information or slowing down when speaking. 3. Autistic clients may need pragmatic support such as filling out a form, figuring out job benefits, or problem-solving house situations. Clinicians should be flexible in supporting their client’s practical needs or referring to services that are tailored toward practical support. 4. Clinicians should know about autism and have the humility to honor the autistic client’s lived experiences. Clinicians should understand the heterogeneity of autism. 5. Clinicians should use a strength-based approach within the neurodiversity paradigm and not a medical-based approach to help clients explore and understand their autistic identity. Autistic peer support groups and groups that are led by a neurodivergent clinician are often better at embodying that approach. What do these findings add to what was already known? An important finding is that autistic adults want services that focus on exploring their identities and managing the stressors of living with a disability in an ableist society, instead of changing the adult’s characteristics. What are potential weaknesses in the study? The population sample included in the study was not very diverse. Participants were majority White, in a Western-based country, and did not have a co-occurring intellectual disability. How will these findings help autistic adults now or in the future? Our results offer practical recommendations for clinicians so that autistic adults can have a more helpful and affirming service experience.

Bibliographie citée par cette référence

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Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.

Références citées
99
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
14 / 99 (14,1 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
55 / 511 (10,8 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 55 / 216 (25,5 %). Auteurices cité·es distinct·es identifié·es comme autistes : 44 / 449 (9,8 %).
Occurrences citées rattachées à la base AutiHub
216 / 511 (42,3 %)
Auteurices cité·es distinct·es rattaché·es : 167 / 449 (37,2 %)
Occurrences rattachées, non identifiées comme autistes
161 / 216 (74,5 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 161 / 511 (31,5 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 123 / 167 (73,7 %).
4 entrées de bibliographie citée n’ont pas pu être entièrement enrichies à partir des métadonnées DOI.
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