Shtayermman, 2009). G Children and adults in the US and education professionals in Hong Kong exhibit stigmatizing attitudes towards ASD. (e.g. Butler & Gillis ...
Can researchers use the Internet to assess and change conceptions of autism cross-culturally?
Cross-cultural Misconceptions about ASD Misconceptions about ASD have been documented among: College students in Britain, Lebanon, Nigeria and the US (GillespieLynch et al., 2015; Obeid et al., 2015; Igwe et al., 2010; Shah, 2001; Tipton & Blacher, 2013)
General population samples in China, Ireland, Japan, and the US (Dillenburger et al., 2013; Holt & Christensen, 2013; Koyama et al., 2008; Wang et al., 2012).
Health care professionals in Nepal, Nigeria, Pakistan, and the US (Bakare et al., 2009; Heidgerken et al., 2005; Imran et al., 2011; Kharti et al., 2011)
Parents of autistic people in Hong Kong, Saudi Arabia, and South Korea (Alqahtani, 2012; Grinker & Cho, 2013; Mak & Kwok, 2010) Schoolchildren in the US (Campbell & Barger, 2014) Teachers and police officers in UK (Chown, 2010; Helps et al., 1999)
Common Misconceptions about ASD Underestimating the prevalence of ASD Lack of knowledge about core characteristics, including confusing ASD with other disorders Misconceptions about etiology e.g., poor parenting or vaccines Insufficient knowledge about how to support those on the spectrum
Consequences of Misconceptions Cross-cultural variations in knowledge about ASD may influence how it is interpreted (including whether or not it is identified), expressed, and supported (Daley, 2002; Matson et al., 2011; Ravindran & Myers, 2012).
The misconception that genetic contributions to ASD are necessarily heritable may contribute to stigma. In South Korea, ASD is widely believed to be heritable and is highly stigmatized. Families seek out other diagnoses, such as “reactive attachment disorder”, which confer blame for ASD on parents rather than “sullying” the family line (Grinker & Cho, 2013).
Stigma towards ASD Perceived stigma towards ASD has been reported by: Parents of autistic people in Australia, India, Iran, and South Korea (Dehnavi et al., 2011; Divan et al., 2012; Farrugia, 2009; Grinker & Cho, 2013; Gray, 2002)
Autistic people in the US and Britain (Humphrey & Lewis, 2008; Shtayermman, 2009).
Children and adults in the US and education professionals in Hong Kong exhibit stigmatizing attitudes towards ASD (e.g. Butler & Gillis, 2011; Campbell & Barger, 2014; Ling, Mak, & Cheng, 2010).
Contributors to Stigma The absence of visible markers of ASD may contribute to stigma, as others may perceive an autistic person to be voluntarily violating social norms (Gray, 2002). Women and those with more contact with autism often exhibit more knowledge and less stigma (Dillenburger et al., 2013; Gillespie-Lynch et al., 2015; Koyama et al., 2008; Wang et al., 2012).
Reduced knowledge may contribute to stigma towards ASD and other disabilities (Corrigan & Penn, 1989; Ling et al., 2010; Mahoney, 2008 but see Butler & Gillis, 2011).
By increasing knowledge about ASD, it may be possible to decrease stigma.
Research Aims Use an online survey and associated autism training to compare knowledge of and stigma towards autism across cultures: Study 1- Compare conceptions of autism among college students in 3 cultures defined geographically: Japan (N = 219), Lebanon (N = 354), and the US (N = 574) Study 2- Compare conceptions of autism across 3 cultures defined by experience with autism: autistic people (N = 219), family members of autistic people (N = 138), and the general public (N = 115) Gillespie-Lynch et al., 2015 JADD; Obeid et al., 2015 JADD; Gillespie-Lynch et al., under review
Measures: Online Survey Demographics questionnaire Pre-test Knowledge: Adapted Stone’s Autism Awareness Scale (range -26 to 26) Researcher developed knowledge questions
Stigma: Social Distance Scale (Bogardus, 1924; range 4-24)
Researcher developed training about autism Post-test identical to pre-test
Key Measures
DSM-5 criteria for Autism Spectrum Disorder (ASD) Social Communication Impairment
Restricted Interests or Behaviors
Reduced social-emotional reciprocity
Repetitive movements, object use, or speech
Deficits in nonverbal communication
Rituals, routines or resistance to change
Difficulty with relationships
Restricted, intense or focused interests Over or underreactivity to sensory information or unusual sensory interests
We all have some autistic traits
Gifted people and systematic thinkers like scientists tend to have more autistic traits
ASD is diagnosed when traits limit everyday functioning and when enough traits are exhibited
Intelligence varies among people with ASD just as it does among people in general
Study 1: Why compare these countries? Similar levels of collectivism Dissimilar tradition autism research Dissimilar access to autism care Dissimilar sociodemographics
Dissimilar levels of collectivism Similar tradition autism research Similar access to autism care Similar sociodemographics
Dissimilar levels of collectivism Dissimilar tradition autism research Dissimilar access to autism care Dissimilar sociodemographics
Matsumoto et al., 2008 OARC, 2012
Study 1: Hypotheses 1. We expected stigma to be heightened in Japan and Lebanon relative to the US as more collectivistic values may be associated with greater stigma towards mental illness (Papadopoulos et al., 2013) 2. We expected knowledge to be highest in the US followed by Japan and then Lebanon reflecting research productivity in each region (OARC, 2012)
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Cross-cultural patterns Similar heightened stigma Dissimilar levels of knowledge Dissimilar awareness of disparities in access to care
Dissimilar levels of stigma Similar levels of knowledge Similar awareness of disparities
Dissimilar levels of stigma Dissimilar levels of knowledge Dissimilar awareness of disparities
Changing Misconceptions Participation in our online autism training was associated with increases in knowledge and decreases in stigma in the US, Japan and Lebanon (Gillespie-Lynch et al., 2015; Obeid et al., 2015; Someki et al., in prep)
Who is missing from this aforementioned research? Misconceptions associated with ASD have been documented around the world among: College students in Britain, Lebanon, Nigeria and the US (GillespieLynch et al., 2015; Obeid et al., 2015; Igwe et al., 2010; Shah, 2001; Tipton & Blacher, 2013)
General population samples in China, Ireland, Japan, and the US (Dillenburger et al., 2013; Holt & Christensen, 2013; Koyama et al., 2008; Wang et al., 2012).
Health care professionals in Nepal, Nigeria, Pakistan, and the US (Bakare et al., 2009; Heidgerken et al., 2005; Imran et al., 2011; Kharti et al., 2011)
Parents of autistic people in Hong Kong, Saudi Arabia, and South Korea (Alqahtani, 2012; Grinker & Cho, 2013; Mak & Kwok, 2010) Schoolchildren in the US (Campbell & Barger, 2014) Teachers and police officers in UK (Chown, 2010; Helps et al., 1999)
Rationale for Study 2 Traditional expert knowledge of autism derives from observations by people who lack the lived experience of being autistic (Nicolaidis, 2012). Autistic adults’ knowledge about autism may be underappreciated due to the lack of purposeful examination of their knowledge. Many autistic adults followed closely, and had strong opinions about, the revision of the diagnostic criteria for autism (APA, 2013; Giles, 2014; Linton et al., 2014).
Some autistic adults research autism extensively and consider themselves “the experts” on autism, yet as one stated, “everybody is an expert bar the person with a diagnosis. That needs to change” (Griffith et al., 2012, p. 14; Hurlbutt and Chalmers, 2002, p. 105).
Research Aims Use an online survey and associated autism training to compare knowledge of and stigma towards autism across cultures: Study 1- Compare conceptions of autism among college students in 3 cultures defined geographically: Japan (N = 219), Lebanon (N = 354), and the US (N = 574) Study 2- Compare conceptions of autism across 3 cultures defined by experience with autism: autistic people (N = 219), family members of autistic people (N = 138), and the general public (N = 115) Gillespie-Lynch et al., 2015 JADD; Obeid et al., 2015 JADD; Gillespie-Lynch et al., under review
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Autistic Essentialism about Autism 100" 90" 80" 70" 60" 50" 40" 30" 20" 10" 0"
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Au#s#c Par#cipants’ Defini#ons of ASD
“Being wired hot, hypersensitive, and unable to adequately filter sensory input and information, to the point where it affects your ability to focus on things and develop interpersonal relationships, inhibiting development of things such as theory of mind..” “I do NOT agree that the autism spectrum is a disorder. I take offense at the those who put together this survey calling AS a disorder. It is a DIFFERENCE. It is actually a more orderly wiring of the brain, so calling it a disorder is way off base. The extra nerve endings can be disabling. But when people on the spectrum find their hidden talent, they blossom and are a jewel to behold.” “They are a nonsensical and arbitrary distinction within an obviously gradient set of traits, intended to define the autism continuum as a set of disorders.”
Au#s#c Par#cipants’ Defini#ons of ASD
“Autistic Spectrum ?disorders? are one of many naturally occurring human neurotypes, often characterized by greatly heightened (or diminished) sensory perception and lack of filter and habituation, often leading to a greater awareness of detail and specialized abilities and skills. The Autistic Spectrum is not a set of disorders, but in this society, people of the dominant neurotype are unfortunately prejudiced to see all significant neurological deviation from normative as ?disordered?.” “An array of behavioral and communicative coping mechanisms. Every person has a different array. There's no such thing as high functioning or low functioning, each of us can ricochet back and forth depending on stimuli. Simply, ASD is part of the Spectrum of human neurology.”
Conclusions: Study 2 An online sample of autistic people exhibited less stigma towards autism and more knowledge of autism than the public. Thus, the Internet may encourage transnational cultures of shared experience by providing a forum for autistic individuals to define autism on their own terms (Kapp, Gillespie-Lynch, et al., 2013). This study demonstrates that autistic people should be considered autism experts and be involved as empowered collaborators in the research process. Identifying how autistic people think about autism is a first step toward developing research that is relevant to the interests and needs of the community whom the research is intended to serve.
Future Research Online cross-cultural surveys including measures of individualism/collectivism, social desirability, etc.: Heightened stigma associated with collectivism in Japan
In-person interviews/autism trainings with students in Japan, mothers/teachers of autistic people in Lebanon, and autistic people in the US Larger scale international surveys to investigate interactions between the two types of culture examined here conducted online and in-person
Thank you Thank you to all of our participants for your time and helpful feedback Thank you to our funding agency: CUNY Project REACH and the Far Fund Thanks to you for listeningJ
Different Paths to Heightened Stigma Japanese students showed greater recognition that people with ASD have attachments, show affection, and are NOT deliberately uncooperative than US and Lebanese students (ps
