Autistic Self-Advocacy and the Neurodiversity Movement: Implications for Autism Early Intervention Research and Practice

. 2021 ; 12 () : 635690. [epub] 20210412

Status PubMed-not-MEDLINE Jazyk angličtina Země Švýcarsko Médium electronic-ecollection

Typ dokumentu časopisecké články

Perzistentní odkaz   https://www.medvik.cz/link/pmid33912110

The growth of autistic self-advocacy and the neurodiversity movement has brought about new ethical, theoretical and ideological debates within autism theory, research and practice. These debates have had genuine impact within some areas of autism research but their influence is less evident within early intervention research. In this paper, we argue that all autism intervention stakeholders need to understand and actively engage with the views of autistic people and with neurodiversity as a concept and movement. In so doing, intervention researchers and practitioners are required to move away from a normative agenda and pay diligence to environmental goodness-of-fit, autistic developmental trajectories, internal drivers and experiences, and autistic prioritized intervention targets. Autism intervention researchers must respond to these debates by reframing effectiveness, developing tools to measure autistic prioritized outcomes, and forming partnerships with autistic people. There is a pressing need for increased reflection and articulation around how intervention practices align with a neurodiversity framework and greater emphasis within intervention programmes on natural developmental processes, coping strategies, autonomy, and well-being.

Zobrazit více v PubMed

Aldred C., Green J., Adams C. (2004). A new social communication intervention for children with autism: pilot randomised controlled treatment study suggesting effectiveness. J. Child Psychol. Psychiatry 45, 1420–1430. 10.1111/j.1469-7610.2004.00338.x PubMed DOI

Autistica (2015). Your Questions: Shaping Future Autism Research. Available online at: https://www.autistica.org.uk/downloads/files/Autism-Top-10-Your-Priorities-for-Autism-Research.pdf (accessed March 8, 2021).

Bascom J. (2012). Quiet hands, in Loud Hands: Autistic people, Speaking, ed J. Bascom (The Autistic Press), 177–182. Available online at: https://juststimming.wordpress.com/2011/10/05/quiet-hands/ (accessed March 8, 2021).

Belcher H., Ford R., Morein S., Stagg S. (2019,. January 23). Social Skills Predict Diagnosis of Autism in Women [Poster presentation]. British Psychological Society Division of Clinical Psychology Conference, Manchester, UK. Available online at: https://www.bps.org.uk/sites/www.bps.org.uk/files/Events%20-%20Files/DCP%20conference%202019%20abstracts%20.pdf (accessed March 8, 2021).

Benson P. R., Daley D., Karlof K. L., Robison D. (2011). Assessing expressed emotion in mothers of children with autism: the Autism-Specific Five Minute Speech Sample. Autism 15, 65–82. 10.1177/1362361309352777 PubMed DOI

Bölte S., de Schipper E., Robison J. E., Wong V. C. N., Selb N., Sighal N., et al. . (2014). Classification of functioning and impairment: the development of ICF core sets for autism spectrum disorder. Autism Res. 7, 167–172. 10.1002/aur.1335 PubMed DOI

Bottema-Beutel K., Crowley S., Sandbank M., Woynaroski T. G. (2020). Research Review: Conflicts of Interest (COIs) in autism early intervention research–a meta-analysis of COI influences on intervention effects. J. Child Psychol. Psychiatry 62, 5–15. 10.1111/jcpp.13249 PubMed DOI PMC

Bottema-Beutel K., Park H., Kim S. Y. (2018). Commentary on social skills training curricula for individuals with ASD: social interaction, authenticity, and stigma. J. Autism Dev. Disord. 48, 953–964. 10.1007/s10803-017-3400-1 PubMed DOI

Buckle K. L. (2013). Is reducing disability always good? [Unpublished Master's Thesis]. University of Manchester, UK.

Buckle K. L., Leadbitter K., Poliakoff E., Gowen E. (2020). No way out except from external intervention: first-hand accounts of autistic inertia. PsyArXiv. 10.31234/osf.io/ahk6x PubMed DOI PMC

Burnham Riosa P., Chan V., Maughan A., Stables V., Albaum C., Weiss J. A. (2017). Remediating deficits or increasing strengths in autism spectrum disorder research: a content analysis. Adv. Neurodeve. Disord. 1, 113–121. 10.1007/s41252-017-0027-3 DOI

Bury S. M., Jellett R., Spoor J. R., Hedley D. (2020). It Defines Who I Am or It's Something I Have: What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer?. J. Autism Develop. Disord. 10.1007/s10803-020-04425-3. [Epub ahead of print]. PubMed DOI

Cassidy S. A., Robertson A., Townsend E., O'Connor R. C., Rodgers J. (2020). Advancing our understanding of self-harm, suicidal thoughts and behaviours in autism. J. Autism Dev. Disord. 50, 3445–3449. 10.1007/s10803-020-04643-9 PubMed DOI

Chapman R. (2020). Neurodiversity and the social ecology of mental functioning. Perspect. Psychol. Sci. 10.1177/1745691620959833. [Epub ahead of print]. PubMed DOI

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, 477–493. 10.1177/1362361318757048 PubMed DOI

Crompton C. J., Sharp M., Axbey H., Fletcher-Watson S., Flynn E. G., Ropar D. (2020). Neurotype-matching, but not being autistic, influences self and observer ratings of interpersonal rapport. Front. Psychol. 11:586171. 10.3389/fpsyg.2020.586171 PubMed DOI PMC

Dekker M. (2017, August 8). Pick a side: the dilemma of being an autistic parent [Presentation]. Autscape, Northampton. Available online at: http://www.autscape.org/2017/programme/handouts/Pick%20a%20side.pdf (accessed March 8, 2021).

Dekker M. (2020). From exclusion to acceptance: independent living on the Autistic Spectrum, in Autistic Community and the Neurodiversity Movement: Stories From the Frontline, ed S. Kapp (Singapore: Springer Nature: ), 41–49. 10.1007/978-981-13-8437-0_3 DOI

den Houting J. (2019). Neurodiversity: an insider's perspective. Autism 23, 271–273. 10.1177/1362361318820762 PubMed DOI

Dykshoorn K. L., Cormier D. C. (2019). Autism spectrum disorder research: time for positive psychology. Autism Open Access 9:235. 10.35248/2165-7890.19.9.235 DOI

Fletcher-Watson S. (2018). Is Early Autism Intervention Compatible With Neurodiversity [Blog post]. Available online at: https://dart.ed.ac.uk/intervention-neurodiversity/ (accessed March 8, 2021).

Fletcher-Watson S., Adams J., Brook K., Charman T., Crane L., Cusack J., et al. . (2019). Making the future together: shaping autism research through meaningful participation. Autism 23, 943–953. 10.1177/1362361318786721 PubMed DOI PMC

French L., Kennedy E. M. M. (2018). Annual Research Review: early intervention for infants and young children with, or at-risk of, autism spectrum disorder: a systematic review. J. Child Psychol. Psychiatry 59, 444–456. 10.1111/jcpp.12828 PubMed DOI

Gordon K., Murin M., Baykaner O., Roughan L., Livermore-Hardy V., Skuse D., et al. . (2015). A randomised controlled trial of PEGASUS, a psychoeducational programme for young people with high-functioning autism spectrum disorder. J. Child Psychol. Psychiatry 56, 468–476. 10.1111/jcpp.12304 PubMed DOI PMC

Green J., Aldred C., Charman T., Le Couteur A., Emsley R. A., Grahame V., et al. . (2018). Paediatric Autism Communication Therapy-Generalised (PACT-G) against treatment as usual for reducing symptom severity in young children with autism spectrum disorder: study protocol for a randomised controlled trial. Trials 19:514. 10.1186/s13063-018-2881-3 PubMed DOI PMC

Green J., Charman T., McConachie H., Aldred C., Slonims V., Howlin P., et al. . (2010). Parent-mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial. Lancet 375, 2152–2160. 10.1016/S0140-6736(10)60587-9 PubMed DOI PMC

Grove R., Hoekstra R. A., Wierda M., Begeer S. (2018). Special interests and subjective wellbeing in autistic adults. Autism Res. 11, 766–775. 10.1002/aur.1931 PubMed DOI

Happé F., Frith U. (2020). Annual Research Review: looking back to look forward–changes in the concept of autism and implications for future research. J. Child Psychol. Psychiatry 61, 218–232. 10.1111/jcpp.13176 PubMed DOI

Hughes J. A. (2020). Does the heterogeneity of autism undermine the neurodiversity paradigm? Bioethics 35, 47–60. 10.1111/bioe.12780 PubMed DOI

Hughes J. M. (2016). Increasing neurodiversity in disability and social justice advocacy groups [White paper]. Autistic Self Advocacy Network. Available online at: https://autisticadvocacy.org/wp-content/uploads/2016/06/whitepaper-Increasing-Neurodiversity-in-Disability-and-Social-Justice-Advocacy-Groups.pdf (accessed March 8, 2021).

Iemmi V., Knapp M., Ragan I. (2017). The Autism Dividend: Reaping the Rewards of Better Investment. Vancouver: Michael Smith Foundation for Health Research.

Jaarsma P., Welin S. (2012). Autism as a natural human variation: reflections on the claims of the neurodiversity movement. Health Care Analysis 20, 20–30. 10.1007/s10728-011-0169-9 PubMed DOI

James Lind Alliance (2016). Priority Setting Partnerships: Autism. Available online at: https://www.jla.nihr.ac.uk/priority-setting-partnerships/autism/ (accessed March 8, 2021).

Kapp S. (2020). Introduction, in Autistic Community and the Neurodiversity Movement: Stories from the Frontline, ed S. Kapp (Singapore: Springer Nature: ), 1–19. 10.1007/978-981-13-8437-0 DOI

Kapp S. K., Steward R., Crane L., Elliott D., Elphick C., Pellicano E., et al. . (2019). ‘People should be allowed to do what they like': autistic adults' views and experiences of stimming. Autism 23, 1782–1792. 10.1177/1362361319829628 PubMed DOI PMC

Kaufman B. N. (1976). Son-rise. New York, NY: HarperCollins.

Kenny L., Hattersley C., Molins B., Buckley C., Povey C., Pellicano E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism 20, 442–462. 10.1177/1362361315588200 PubMed DOI

Kirkham P. (2017). ‘The line between intervention and abuse'–autism and applied behaviour analysis. Hist. Human Sci. 30, 107–126. 10.1177/0952695117702571 DOI

Kras J. F. (2009). The ransom notes affair: when the neurodiversity movement came of age. Disability Stud. Q. 30:1065. 10.18061/dsq.v30i1.1065 DOI

Lai M. C., Szatmari P. (2019). Resilience in autism: research and practice prospects. Autism 23:539. 10.1177/1362361319842964 PubMed DOI

Lam G. Y. H., Holden E., Fitzpatrick M., Raffaele Mendez L., Berkman K. (2020). Different but connected: participatory action research using Photovoice to explore well-being in autistic young adults. Autism 24:1246–1259. 10.1177/1362361319898961 PubMed DOI

Leadbitter K., Aldred C., McConachie H., Le Couteur A., Kapadia D., Charman T., et al. . (2018). The autism family experience questionnaire (AFEQ): an ecologically-valid, parent-nominated measure of family experience, quality of life and prioritised outcomes for early intervention. J. Autism Dev. Disord. 48, 1052–1062. 10.1007/s10803-017-3350-7 PubMed DOI PMC

Lodder A., Papadopoulos C., Randhawa G. (2020). SOLACE: a psychosocial stigma protection intervention to improve prove the mental health of parents of autistic children - a feasibility randomised controlled trial. J. Autism Dev. Disord. 50, 4477–4491. 10.1007/s10803-020-04498-0 PubMed DOI PMC

Mandy W. (2019). Social camouflaging in autism: is it time to lose the mask? Autism 23, 1879–1881. 10.1177/1362361319878559 PubMed DOI

Maurice C. (1998). Let me Hear Your Voice: A Family's Triumph Over Autism. London: Robert Hale.

McConachie H., Parr J. R., Glod M., Hanratty J., Livingstone N., Oono I. P., et al. . (2015). Systematic review of tools to measure outcomes for young children with autism spectrum disorder. NIHR Health Technol. Assess. Programme. 19. 10.3310/hta19410 PubMed DOI PMC

McDonnell A., Milton D. (2014). Going with the flow: reconsidering ‘repetitive behaviour' through the concept of ‘flow states', in Good Autism Practice: Autism, Happiness and Wellbeing, eds G. Jones and E. Hurley (Birmingham: BILD: ).

McGill O., Robinson A. (2020). Recalling hidden harms: autistic experiences of childhood applied behavioural analysis (ABA). Adv. Autism. 10.1108/AIA-04-2020-0025. [Epub ahead of print]. DOI

McKenzie R., Dallos R., Stedmon J., Hancocks H., Vickery P. J., Ewings P., et al. . (2019). SAFE, a new therapeutic intervention for families of children with autism: study protocol for a feasibility randomised controlled trial. BMJ Open 9:e025006. 10.1136/bmjopen-2018-025006 PubMed DOI PMC

Milton D., Moon L. (2012). The normalisation agenda and the psycho- emotional disablement of autistic people. Autonomy Crit. J. Interdisc. Autism Stud. Available online at: http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/9 (accessed March 15, 2021).

Milton D. E. (2012). On the ontological status of autism: the ‘double empathy problem'. Disability Soc. 27, 883–887. 10.1080/09687599.2012.710008 DOI

Milton D. E. (2014). Autistic expertise: a critical reflection on the production of knowledge in autism studies. Autism 18, 794–802. 10.1177/1362361314525281 PubMed DOI

Mottron L. (2017). Should we change targets and methods of early intervention in autism, in favor of a strengths-based education?. Eur. Child Adolesc Psychiatry 26, 815–825. 10.1007/s00787-017-0955-5 PubMed DOI PMC

Murray D., Lesser M., Lawson W. (2005). Attention, monotropism and the diagnostic criteria for autism. Autism 9, 139–156. 10.1177/1362361305051398 PubMed DOI

National Autistic Taskforce (2019). An independent guide to quality care for autistic people. Available online at: https://nationalautistictaskforce.org.uk/wp-content/uploads/RC791_NAT_Guide_to_Quality_Online.pdf (accessed March 8, 2021).

Neumeier S. M., Brown L. X. Z. (2020). Torture in the name of treatment: the mission to stop the shocks in the age of deinstitutionalisation, in Autistic Community and the Neurodiversity Movement: Stories From the Frontline, ed S. Kapp (Singapore: Springer Nature: ), 195–210. 10.1007/978-981-13-8437-0_14 DOI

Oliver M. (1990). The Politics of Disablement. London: Palgrave. 10.1007/978-1-349-20895-1 DOI

Park C. C. (1972). The Siege: The First Eight Years of an Autistic Child. Boston, MA: Little, Brown and Company.

Parr J. R., Brice S., Welsh P., Ingham B., Le Couteur A., Evans G., et al. . (2020). Treating anxiety in autistic adults: study protocol for the Personalised Anxiety Treatment-Autism (PAT-A©) pilot randomised controlled feasibility trial. Trials 21:265. 10.1186/s13063-020-4161-2 PubMed DOI PMC

Pellicano E., Dinsmore A., Charman T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism 18, 756–770. 10.1177/1362361314529627 PubMed DOI PMC

Pickles A., Le Couteur A., Leadbitter K., Salomone E., Cole-Fletcher R., Tobin H., et al. . (2016). Parent-mediated social communication therapy for young children with autism (PACT): long-term follow-up of a randomised controlled trial. Lancet 388, 2501–2509. 10.1016/S0140-6736(16)31229-6 PubMed DOI PMC

Pickles A., McCauley J. B., Pepa L. A., Huerta M., Lord C. (2020). The adult outcomes of children referred for autism: typology and prediction from childhood. J. Child Psychol. Psychol. 61, 760–767. 10.1111/jcpp.13180 PubMed DOI PMC

Provenzani U., Fusar-Poli L., Brondino N., Damiani S., Vercesi M., Meyer N., et al. . (2020). What are we targeting when we treat autism spectrum disorder? A systematic review of 406 clinical trials. Autism 24, 274–284. 10.1177/1362361319854641 PubMed DOI

Randell E., McNamara R., Delport S., Busse M., Hastings R. P., Gillespie D., et al. . (2019). Sensory integration therapy versus usual care for sensory processing difficulties in autism spectrum disorder in children: study protocol for a pragmatic randomised controlled trial. Trials 20, 1–11. 10.1186/s13063-019-3205-y PubMed DOI PMC

Robertson A. E., Stanfield A. C., Watt J., Barry F., Day M., Cormack M., et al. . (2018). The experience and impact of anxiety in autistic adults: a thematic analysis. Res. Autism Spectr. Disord. 46, 8–18. 10.1016/j.rasd.2017.11.006 DOI

Rodgers J., Herrema R., Honey E., Freeston M. (2018). Towards a treatment for intolerance of uncertainty for autistic adults: a single case experimental design study. J. Autism Dev. Disord. 48, 2832–2845. 10.1007/s10803-018-3550-9 PubMed DOI PMC

Rodogno R., Krause-Jensen K., Ashcroft R. E. (2016). ‘Autism and the good life': a new approach to the study of well-being. J. Med. Ethics 42, 401–408. 10.1136/medethics-2016-103595 PubMed DOI

Runswick-Cole K. (2014). ‘Us' and ‘them': the limits and possibilities of a ‘politics of neurodiversity' in neoliberal times. Disability Soc. 29, 1117–1129. 10.1080/09687599.2014.910107 DOI

Sandbank M., Bottema-Beutel K., Crowley S., Cassidy M., Dunham K., Feldman J. I., et al. . (2020). Project AIM: autism intervention meta-analysis for studies of young children. Psychol. Bull. 146, 1–29. 10.1037/bul0000215 PubMed DOI PMC

Sinclair J. (1993). Don't mourn for us. Autism Network International Newsletter: Our Voice. Available online at: https://www.autreat.com/dont_mourn.html (accessed March 8, 2021).

Singer J. (1998). Odd people in: The birth of community amongst people on the Autistic Spectrum: A personal exploration of a new social movement based on neurological diversity. Doctoral thesis, Sydney: Faculty of Humanities and Social Science University of Technology, Sydney.

Späth E. M., Jongsma K. R. (2020). Autism, autonomy, and authenticity. Med. Health Care Philos. 23, 73–80. 10.1007/s11019-019-09909-3 PubMed DOI PMC

Stevenson N. (2015). Autism Doesn't Have to be Viewed as a Disability or Disorder [blog post]. Available online at: https://www.theguardian.com/science/blog/2015/jul/16/autism-doesnt-have-to-be-viewed-as-a-disability-or-disorder (accessed March 8, 2021).

UK Parliament (2020). Autism: Postnote number 612. Available online at: https://post.parliament.uk/research-briefings/post-pn-0612/ (accessed March 8, 2021).

Wood R. (2019). Autism, intense interests and support in school: from wasted efforts to shared understandings. Educ. Rev. 73, 1–21. 10.1080/00131911.2019.1566213 DOI

Nejnovějších 20 citací...

Zobrazit více v
Medvik | PubMed

Autistic Perspectives on the Future of Clinical Autism Research

. 2022 Jun 01 ; 4 (2) : 93-101. [epub] 20220609

Najít záznam

Citační ukazatele

Pouze přihlášení uživatelé

Možnosti archivace

Nahrávání dat ...