autistic self advocacy network with autism now may 1, 2012
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Autism and Neurodiversity: A Study of Viewsand Influence of a Rising Movement
Steven Kapp
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Medical Model Goal of elimination of disabilities
Personal deficits cause disability
Ignores strengths, social context Empowers professionals, family members
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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 MovementArose mainly on Internet in response to parental advocacy
Celebrates autism as inseparable identity
Disinterested in causation, against normalizationAutism is biological; disability is social
Individual and collective self-advocacy (leadership)
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Medical, Neurodiversity Overlap? Neurodiversity proponents support quality of life
Subjective well-being
Adaptive functioningYet they often oppose intensive therapeutic practices
Controversy over neurodiversity supporters beliefs
Do they recognize autisms deficits?
Do they support intervention to reduce deficits?
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Contested RealitiesAutism as disease Autism as identity
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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
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Study Aims Characterize awareness of and evaluations of the
neurodiversity movement online
Confirm core distinctions between the medical modeland neurodiversity movement
Critically examine the perceived opposition betweenthe medical model and the neurodiversity movement
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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, ViewsAre you aware of the neurodiversity movement? If
yes, where did you learn about it?
Autistic people, friends, people with more educationmore aware of neurodiversity than others
Autistic people more likely to learn aboutneurodiversity online
What is the neurodiversity movement in yourwords?
Few critical responses; no group differences
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People Aware of NeurodiversityHow 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 autismDo 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 CausationDo 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 tobiology alone; more educated people to environment
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Celebrating, Mitigating Autism
How do you (think you would) feel about beingautistic? 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 13
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How do you (think you would) feel about beingautistic? 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 14
Celebrating, Mitigating Autism
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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 ResultsAutistic 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 R01-HD40432 to Scott P. Johnson and by the FPR-UCLACenter for Culture, Brain, and Development
For further contact: [email protected]
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