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Autism and Neurodiversity: A Study of Views and Influence of a Rising Movement

Steven Kapp

Medical Model
Goal of elimination of disabilities Personal deficits cause disability Ignores strengths, social context Empowers professionals, family members

Parents and the Medical Model


Many parents seek childs cure, recovery, normalization Sometimes view autism as hostile, separate from child Often become medical lay experts, cotherapists
Parents, professionals focus predominantly on children Much parental autism advocacy emphasizes causation Many view autism as environmentally influenced disease Often frame autism as epidemic, public health crisis Parental advocacy has prioritized causation research Important reason for dominant focus on children
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Neurodiversity Movement
Arose mainly on Internet in response to parental advocacy
Celebrates autism as inseparable identity Disinterested in causation, against normalization Autism is biological; disability is social Individual and collective self-advocacy (leadership)

Medical, Neurodiversity Overlap?


Neurodiversity proponents support quality of life Subjective well-being Adaptive functioning Yet they often oppose intensive therapeutic practices
Controversy over neurodiversity supporters beliefs Do they recognize autisms deficits? Do they support intervention to reduce deficits?

Contested Realities
Autism as disease Autism as identity

Deficit as Difference?
Ethical call for research to identify community interests Most research has focused on parents views of autism Previously no direct comparison of autistics, others views Learning about neurodiversity may lead to holistic views Perception of more positive, not fewer negative, aspects? Relatives, others may become allies of the movement

Many parents feel strengthened by childs disability

Study Aims
Characterize awareness of and evaluations of the

neurodiversity movement online Confirm core distinctions between the medical model and neurodiversity movement Critically examine the perceived opposition between the medical model and the neurodiversity movement

Methods
Online survey (SurveyMonkey) Recruited online, offline; contacts, groups with diverse views Participants (N = 657) mostly well-educated, white, female Autistics with (N = 223), without (N = 78) formal diagnosis

More than 70 percent endorsed Aspergers diagnosis All could speak; at least 90 percent indicated no speech delay Nearly all completed survey independently Less likely to be employed

Non-autistic (N = 342); many people with disabilities Parents, other relatives, and friends in all groups
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Neurodiversity Awareness, Views


Are you aware of the neurodiversity movement? If yes, where did you learn about it? Autistic people, friends, people with more education more aware of neurodiversity than others Autistic people more likely to learn about neurodiversity online What is the neurodiversity movement in your words? Few critical responses; no group differences
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People Aware of Neurodiversity


How do you (think you would) feel about being autistic? Select as many choices as you want.
Positive emotions: happy, proud, content, excited

endorsed more positive emotions about autism

When talking about autism, which term do you prefer?


autistic person or person with autism

preferred identity-first language to refer to autism

Do you agree or disagree that parents of autistic people shouldseek a cure for their child? expressed less interest in cure for autism
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Core Differences on Causation


Do you agree or disagree that parents of autistic people shouldtry to learn what caused their child to be autistic?
Formally diagnosed autistic people expressed less interest

What do you think is the cause of autism? Parents less likely to reject validity of this question Autistic people more likely to attribute autism to biology alone; more educated people to environment
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Celebrating, Mitigating Autism


How do you (think you would) feel about being autistic? Select as many choices as you want.
Negative emotions: overwhelmed, sad, frustrated, angry, ashamed

Responses did not differ between groups


Do you agree or disagree that parents of autistic

people should do the following:


Understand that autism is part of their childs identity? Learn to speak their childs language? Teach their child how to develop adaptive skills? Teach their child how to appear more like a typically developing person?

Again, responses did not differ between groups

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Celebrating, Mitigating Autism


How do you (think you would) feel about being autistic? Select as many choices as you want.
Negative emotions: overwhelmed, sad, frustrated, angry, ashamed

Responses did not differ between groups


Do you agree or disagree that parents of autistic

people should do the following:


Understand that autism is part of their childs identity? Learn to speak their childs language? Teach their child how to develop adaptive skills? Teach their child how to appear more like a typically developing person?

Again, responses did not differ between groups

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Interpreting Neurodiversity Results


Unexpectedly uncritical definitions of neurodiversity Reflects better representation in media, policy, advocacy? Also, improving outreach to non-autistic allies? Or survey appealed more to supporters of neurodiversity?

Yet parts of survey may have offended proponents of movement

Or participants gave descriptive, not evaluative, description?

Found consistent associations of neurodiversity awareness

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Interpreting Causation Results


Autistic people may assign lower priority to causation Concerns about genetic testing Less opportunity for other priorities, e.g. services Less likely to believe in dramatic rise of autism Possible reasons for autistic peoples biological beliefs May remember autism as always affecting them Less stigma, judgment over responsibility Greater sense of entitlement to support? Are many parents interested in causation for supports?
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Interpreting Deficit as Difference


Positive reframing helps autistic people, parents cope May explain growing influence of neurodiversity Near-universal agreement on adaptive functioning Adaptation works both ways, e.g. person-centered support What about passing? There is much room for common ground on supports Strength-based approaches, even behavioral therapies? Differences mainly about priorities, who leads, attitudes Sometimes rhetoric
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Limitations
Online, self-selected sample with little participant info Less socio-economic and developmental diversity Yet insights about females, self-diagnosed people?

Females more marginalized, identity with online community? Many people, especially adults, who lack support but need it? Still suggests recognition of challenges, support or desire for help

Survey limitations Limited items on each point may have decreased sensitivity Accessibility problems

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Future Studies
Should use community-based participatory research

Autistic people online and offline, with diverse methods Other groups of people with disabilities/disabled people

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Acknowledgements
Participants and recruitment helpers Co-authors: Kristen Gillespie-Lynch, Lauren E. Sherman, Ted Hutman Survey development: David S. Smith Feedback: Patricia M. Greenfield lab
Introduction: Yalda T. Uhls

Funding: National Institutes of Health Grant R01HD40432 to Scott P. Johnson and by the FPR-UCLA Center for Culture, Brain, and Development
For further contact: kapp@ucla.edu

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