Autistic Self Advocacy Network with Autism NOW May 1, 2012

7/31/2019 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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The National Resource & Information

CenterWebsite:www.autismnow.org

Information & Referral Call Center:

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A Case for Youth Leadership: Why and How Young People Can Drive

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Autistic Self Advocacy Network with Autism NOW May 1, 2012

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