Autism and Co-participatory research

What do you characterise Autism as rather than a disorder?

A neurotype

What does the medical model view Autism as?

A pathology of natural human variation that needs to be fixed and causes deficits in a person

The medical model relies on external observation rather than...

Lived Experiences

What does the medical model not account for?

Strengths and abilities

Give examples of the impacts of a deficit-based framework?

Stigma in employment Oppurtunites

What did Pellicano et al 2014 find about the funding of autism research?

56% of resources on biology/brain/cognition and only 1% on societal issues

What did Pellicano et al 2014 find about the actual issues that concerned autistic people

Services and support and public awareness/ practitioner training

What are some challenges in autism research?

Cross cultural research is rare, children/teacher voices are underrepresented

How do autistic people define themselves

Sensory processing differences, Communication variations, Social interaction preferences, Need for predictability and routine, Intense interests as strengths

Why is there a myth of an autism epidemic

DSM-2 was very narrow not capturing all those with the neurotype, better identification in girls and marginalized groups

What did Glass et al. 2024 find changed in their research when co-constructing with young people?

The structure changed to be more fluid and messier, and the intended purpose of the stories from being more about each child unfolding their purpose

What did Pellicano et al 2022 find when autistic people were interviewed by an autistic researcher?

Found it easier and some saying they would have dropped out if they weren't

What values underpin participatory research?

Shared power, inclusion, reflexivity, and action.

What is Arnstein's Ladder of Participation?

A model describing levels of participation in decision-making (Arnstein, 1969)

Why is the ladder criticised?

Higher control is not always better or desired.

What is contextual participation?

Flexible involvement based on individual needs and preferences

What is participation fatigue?

Overburdening individuals with involvement demands

Which research stages should share power?

Questions, methods, interpretation, and dissemination