A Research-based group home inspired by autistic people

an example of a research-community partnership

Authors

  • Anne-Marie Nader Université de Montréal

DOI:

https://doi.org/10.15173/cjae.v4i1.5681

Keywords:

autism, housing, community environment, wellbeing

Abstract

The development of adapted housing for autistic adults responds to the desire to work towards greater social justice by developing inclusive living environments in agreement with the needs and expectations of autistic individuals. The aim of this project is to describe an example of a research-community partnership that led to the design of a group living environment based on the preferences of autistic adults. 

References

Al-Beltagi M. (2021). Autism medical comorbidities. World journal of clinical pediatrics, 10(3), 15–28. https://doi.org/10.5409/wjcp.v10.i3.15.

Association américaine de psychiatrie. (2013). Diagnostic and statistical manual of mental disorders DSM 5 (5e éd.). https://doi.org/10.1176/appi.books.9780890425596.

Anderson, C., et Butt, C. (2018). Young Adults on the Autism Spectrum: The Struggle for Appropriate Services. Journal of autism and developmental disorders, 48(11), 3912–3925. https://doi.org/10.1007/s10803-018-3673-z.

Anderson, K. A., Shattuck, P. T., Cooper, B. P., Roux, A. M., & Wagner, M. (2014). Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder. Autism, 18(5), 562-570.

Arsenault, M., Goupil, G. et Poirier, N. (2016). Perceptions de la transition vers la vie adulte d’adolescents et de jeunes adultes ayant un trouble du spectre de l’autisme. Revue de psychoéducation, 45 (1), 25-40.

Ben-Sasson, A., Gal, E., Fluss, R., Katz-Zetler, N., & Cermak, S. A. (2019). Update of a meta-analysis of sensory symptoms in ASD: A new decade of research. Journal of Autism and Developmental Disorders, 49, 4974-4996.

Bissonnette, S., Bouchard, C., St-Georges, N., Gauthier, C., & Bocquillon, M. (2020). Un modèle de réponse à l’intervention (RàI) comportementale : le soutien au comportement positif (SCP). Enfance en difficulté, 7, 131-152.

Boulter, C., Freeston, M., South, M., & Rodgers, J. (2014). Intolerance of uncertainty as a framework for understanding anxiety in children and adolescents with autism spectrum disorders. Journal of autism and developmental disorders, 44, 1391-1402.

Buck, T. R., Viskochil, J., Farley, M., Coon, H., McMahon, W. M., Morgan, J., & Bilder, D. A. (2014). Psychiatric comorbidity and medication use in adults with autism spectrum disorder. Journal of autism and developmental disorders, 44, 3063-3071.

Chung, S., & Son, J. W. (2020). Visual perception in autism spectrum disorder: a review of neuroimaging studies. Journal of the Korean Academy of Child and Adolescent Psychiatry, 31(3), 105.

Courcy, I. et Jeanneret, N. (2023). Un chez-soi dans la communauté. Les besoins, les attentes et les préférences d’adultes autistes en matière d’hébergement et de logement au Québec. Rapport de recherche. Université de Montréal, La Maison de l’Autisme. Montréal, Canada.

Denne, L. D., Hastings R. P., Hughes C. J. (2018). Common approaches to intervention for the support and education of children with autism in the UK: An internet-based parent survey. International Journal of Developmental Disabilities, 64, 105–112.

Dudley, K. M., Klinger, M. R., Meyer, A., Powell, P. & Klinger, L. G. (2019). Understanding service usage and needs for adults with ASD: The importance of living situation. Journal of Autism and Developmental Disorders, 49, 556-568.

Farley, M., Cottle, K. J., Bilder, D., Viskochil, J., Coon, H., & McMahon, W. (2018). Mid-life social outcomes for a population-based sample of adults with ASD. Autism research: official journal of the International Society for Autism Research, 11(1), 142–152. https://doi.org/10.1002/aur.1897.

Fondation Véro & Louis. (2023). Création de la première maison Véro & Louis. https://fondationverolouis.com/la-fondation/premiere-maison.

Fortuna, R. J., Robinson, L., Smith, T. H., Meccarello, J., Bullen, B., Nobis, K., & Davidson, P. W. (2016). Health Conditions and Functional Status in Adults with Autism: A Cross-Sectional Evaluation. Journal of general internal medicine, 31(1), 77–84. https://doi.org/10.1007/s11606-015-3509-x.

Gatien, J. et Leroux, S. (2017) Guide à l’intention des proches de la personne pour qui on envisage une ressource. Centre intégré de santé et de services sociaux de la Montérégie-Ouest.

https://cuditsa.ca/wp-content/uploads/publications/Guide-Heìbergement.pdf.

Ghanouni, P., Quirke, S., Blok, J., & Casey, A. (2021). Independent living in adults with autism spectrum disorder: Stakeholders' perspectives and experiences. Research in developmental disabilities, 119, 104085.https://doi.org/10.1016/j.ridd.2021.104085.

Gray, K. M., Keating, C. M., Taffe, J. R., Brereton, A. V., Einfeld, S. L., Reardon, T. C., & Tonge, B. J. (2014). Adult outcomes in autism: community inclusion and living skills. Journal of autism and developmental disorders, 44(12), 3006–3015. https://doi.org/10.1007/s10803-014-2159-x.

Guite, H. F., Clark, C., & Ackrill, G. (2006). The impact of the physical and urban environment on mental well-being. Public health, 120(12), 1117-1126.

Hedges, S. H., Odom, S. L., Hume, K., & Sam, A. (2018). Technology use as a support tool by secondary students with autism. Autism: the international journal of research and practice, 22(1), 70–79. https://doi.org/10.1177/1362361317717976.

Hollocks, M. J., Lerh, J. W., Magiati, I., Meiser-Stedman, R., & Brugha, T. S. (2019). Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis. Psychological medicine, 49(4), 559–572. https://doi.org/10.1017/S0033291718002283.

Hwang, Y. I. J., Arnold, S., Srasuebkul, P., & Trollor, J. (2020). Understanding anxiety in adults on the autism spectrum: An investigation of its relationship with intolerance of uncertainty, sensory sensitivities and repetitive behaviours. Autism: the international journal of research and practice, 24(2), 411–422. https://doi.org/10.1177/1362361319868907.

Im, D. S. (2021). Treatment of aggression in adults with autism spectrum disorder: A review. Harvard Review of Psychiatry, 29(1), 35–80.

https://doi.org/10.1097/ HRP.0000000000000282.

Jenkinson, R., Milne, E., & Thompson, A. (2020). The relationship between intolerance of uncertainty and anxiety in autism: A systematic literature review and meta-analysis. Autism, 24(8), 1933-1944.

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.

LaSalle, V., Lafon, J. & Pearl, D. (2018). La maison phare : Concevoir un lieu d’habitation pour le bien-être de la personne autiste. Rapport d’étude commandée par la Fondation Véro & Louis. Non publié.

Lauzon, J. A. (2019). Portrait de la situation des milieux de vie, autre que le milieu familial d’origine, des adultes autistes. Fédération québécoise de l’autisme. https://www.autisme.qc.ca/assets/files/04-nos-actions/Avis-prise- position/Memoire_Hebergement.pdf.

Laxman, D. J., Taylor, J. L., DaWalt, L. S., Greenberg, J. S., & Mailick, M. R. (2019). Loss in services precedes high school exit for teens with autism spectrum disorder: A longitudinal study. Autism Research, 12(6), 911-921.

Mahdi, S., Viljoen, M., Yee, T., Selb, M., Singhal, N., Almodayfer, O., & Bölte, S. (2018). An international qualitative study of functioning in autism spectrum disorder using the World Health Organization international classification of functioning, disability and health framework. Autism Research, 11(3), 463-475.

Mahdi, S., Albertowski, K., Almodayfer, O., Arsenopoulou, V., Carucci, S., Dias, J. C., & Bölte, S. (2018). An international clinical study of ability and disability in autism spectrum disorder using the WHO-ICF framework. Journal of autism and developmental disorders, 48, 2148-2163.

Magiati, I., Tay, X.W., & Howlin, P. (2014). Cognitive, language, social and behavioural outcomes in adults with autism spectrum disorders: A systematic review of longitudinal follow-up studies in adulthood. Clinical Psychology Review, 34, 73 86.

Matthews, N. L., Smith, C. J., Pollard, E., Ober-Reynolds, S., Kirwan, J., & Malligo, A. (2015). Adaptive Functioning in Autism Spectrum Disorder During the Transition to Adulthood. Journal of autism and developmental disorders, 45(8), 2349–2360. https://doi.org/10.1007/s10803-015-2400-2.

Mason, D., Milner, V., Clark, L., Kelly, E., Pyefinch, R., & Happé, F. (2023). Autistic people and moving home: A systematic review. Autism in Adulthood, 5(3), 236-247.

Miller, D. J. (2016). Educator perceptions of visual support systems and social skills for young adults with autism spectrum disorders (Doctoral dissertation, Walden University).

Ministère de la Santé et des Services sociaux du Québec. (2017). Plan d’action sur le trouble du spectre de l’autisme 2017-2022 : Des actions structurantes pour les personnes et leur famille. Gouvernement du Québec. https://publications.msss.gouv.qc.ca/msss/fichiers/2016/16-824-06W.pdf.

Ministère de la santé et des services sociaux. (2018, avril). À propos. Ressources intermédiaires et de type familial (RI-RTF). https://www.msss.gouv.qc.ca/professionnels/ressources/ri-rtf/.

Nader, A.M., St-Jean, E., Charette, M., Lasalle, V., Forgeot d’Arc, B., Courcy, I. & Godbout, R. (2022). A living environment adapted to the needs of autistic adults: What does literature offer? International Society for Autism Research. Austin, États-Unis.

Organisation Mondiale de la Santé. (2001). Classification internationale du fonctionnement, du handicap et de la santé. Genève: OMS.

Organisation des Nations Unis. (1948). Article 25 : Le droit au logement. Déclaration universelle des droits de l’homme.

Poon, K. K., & Sidhu, D. J. (2017). Adults with autism spectrum disorders: a review of outcomes, social attainment, and interventions. Current opinion in psychiatry, 30(2), 77–84. https://doi.org/10.1097/YCO.0000000000000306.

Robertson, C. E., & Baron-Cohen, S. (2017). Sensory perception in autism. Nature Reviews Neuroscience, 18(11), 671-684.

Ribu, K., & Patel, T. (2016). Developing a User-Centred Planning Tool for Young Adults with Development Disorders: A Research-Based Teaching Project. Studies in health technology and informatics, 229, 283–286.

Rutherford, M., Baxter, J., Grayson, Z., Johnston, L., & O’Hare, A. (2020). Visual supports at home and in the community for individuals with autism spectrum disorders: A scoping review. Autism, 24(2), 447-469.

Schott, W., Nonnemacher, S., & Shea, L. (2021). Service use and unmet needs among adults with autism awaiting home-and community-based Medicaid services. Journal of Autism and Developmental Disorders, 51, 1188-1200.

Sosnowy, C., Silverman, C., & Shattuck, P. (2018). Parents' and young adults' perspectives on transition outcomes for young adults with autism. Autism: the international journal of research and practice, 22(1), 29-39. https://doi.org/10.1177/1362361317699585.

Steele, K., & Ahrentzen, S. (2015). At Home With Autism: Designing housing for the spectrum (1st ed). Bristol University Press. https://doi.org/10.2307/j.ctt1t88z8x.

Thompson, C., Bölte, S., Falkmer, T., & Girdler, S. (2018). To be understood: Transitioning to adult life for people with Autism Spectrum Disorder. PloS one, 13(3), https://doi.org/10.1371/journal.pone.0194758.

van Asselt-Goverts, A. E., Embregts, P. J. C. M., Hendriks, A. H. C., Wegman, K. M., & Teunisse, J. P. (2015). Do social networks differ? Comparison of the social networks of people with intellectual disabilities, people with autism spectrum disorders and other people living in the community. Journal of Autism and Developmental Disorders, 45, 1191-1203.

Vassart, S. (2006). Habiter. Pensée plurielle, 12(2), 9-19. https://doi.org/10.3917/pp.012.09.

Wei, X., Wagner, M., Hudson, L., Yu, J. W., & Shattuck, P. (2015). Transition to adulthood: Employment, education, and disengagement in individuals with autism spectrum disorders. Emerging Adulthood, 3(1), 37-45.

Published

2024-05-01

How to Cite

Nader, A.-M. (2024). A Research-based group home inspired by autistic people: an example of a research-community partnership. Canadian Journal of Autism Equity, 4(1), 51–61. https://doi.org/10.15173/cjae.v4i1.5681