2 - autism and participatory research

challenging trad autism definitions

autism is a neurotype, not a disorder - they function differently from what’s considered normal

• DSM-V (2013): clinical approach, ‘deficit’, focuses on their ‘problems’

• Diagnoses are important for supporting not fixing. Negative language can impact one’s experience w/autism.

issues w/medical model

• pathologises a neurotype that’s just a natural behaviour variation

• uses external observation vs. lived experience

• excludes strengths + abilities of autistic ppl

• blames individual rather than wider society

impacts of a ‘deficit’ narrative

• education - doesn’t work around their needs (e.g., restrictive timetable)

• limited employment opportunities

• lots of stigma, leading to mistreatment

• fix person rather than environment

• autistic ppl perceived as incompetent

• major research funding towards a “cure”

Pellicano et al (2014)

lots of funding towards curing autistic ppl. but this paper found that autistic ppl want more research to fund how they can be supported (only 5% of research goes into this)

trad autistim research problems

• research focuses on older children + young ppl rather than (older) adults (Fayette & Bond, 2018)

• younger children + complex needs are underrepresented - like non-verbal kids - (Caccio et al., 2020; Parsons et al., 2021)

• focus on difficulties and challenges

cross cultural autism research

autism exists in every culture but research has a dominant western lens. so cultural understanding of neurodiversity varies widely.

to autistic ppl, the spectrum should be viewed as a constellation of 5 behaviours

• sensory processing differences

• communication variations

• social interaction preferences

• need for predictability and routine

• intense interests as strengths

UK prevalence (NICE, 2025)

estimated prevalence is about 1.1%. M:F ratio is 3:1

• women < likely to be diagnosed due to diff presentation

• low prevalence = lack of diagnoses

is autism everywhere?

no! recognition’s improved and diagnostic criteria’s widened. reduced stigma = more ppl seeking diagnosis. better identification in girls and marginalised groups

intersectionality in autism diagnoses

ppl are finally considering autism across cultures, ethnicities, and SES. important as ppl may have multiple marginalised identities that are barriers to diagnosis + support

importance of autistic-led research

• looks at QoL from autistic perspectives

• more meaningful + ethical methodologies

• better real-world applications

• can focus on autistic ppl’s priorities

participation ladder

framework allowing ppl to contribute in ways that work best for them and add more personal views to research

problems w/participation ladder

• individual needs aren’t considered

• promotes tokenism when we want genuine participation

contextual participation allows comfortable contribution through:

• flexible approaches

• doesn’t believe that the more participation =better

• respecting diff participation levels

• avoiding participation fatigue

power can be used better by sharing decision making power. done by…

• research q making: q’s made that acc matter to the community

• methodology choices: who will be included/excluded

• share data interpretations: gather data alone, interpret findings together

• co-researcher models: make research q’s together

how can we address power imbalances?

• recognise expertise of lived experts at any decision-making stage

• compensate & acknowledge those that assisted research

• have accessible research processes and summaries

• respect comm preferences → voice isn’t always used

historical exclusion in autism research

• research done TO and not WITH

• assumptions made about their capacity and competence

• missing autistic perspectives and priorities

benefits of autistic participation

• more relevant research q’s

• improved methodology and accessibility

• better interpretation of findings

challenges of participatory research

• researchers responsible to include voices < likely to be heard

• comms accessibility

• sensory considerations

• time + relationships

• flexible participation models

neurodiversity paradigm

alt way of thinking of autism. there’s no right/wrong brain, ppl just have diff neurological development

social model of disability

a person’s environment doesn’t cater to their specific characteristics and therefore ‘disables’ them

double-empathy problem

NA and autistic ppl are bad at communicating with each other due to their diff life experiences