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Autism training developed by members of INSAR's 2020 Autistic Researchers Committee



This brief autism training was developed by members of INSAR's new (as of 2020) Autistic Researchers Committee to train conference staff. The committee invites others to use the training to train other people as well and welcomes feedback to guide future revisions.
Autism Training
To ci te this re so urce , u se this citation:
TC Waisman, Dena Gassner, Kristen Gillespie-Lynch, Jac Den Houting, Steven Kapp, Brett
Nachman, Stephen Shore, Patrick Dwyer. (2020). Autism Training for INSAR 2020
developed by INSAR’s 2020 Autistic Researchers Committee.
What is
Autism occurs
in about
1 in 59 people
(Centers for Disease Control
and Prevention, 2019 – but
different studies report
different numbers, due to
shortcomings and/or
differences in how autism is
conceptualized and
identified across regions)
Often but not always observed in people with autism
(Remember each autistic person is different)
Hyper-focus on special interest
Hyper-observant of details
Sensory differences to light, sound, touch, smell,
Difficulty communicating needs, particularly
when overwhelmed
Co-occurring medical challenges which may
include severe allergies, food intolerances,
asthma, anxiety, migraine, eczema, etc.
Safe, quiet, low-sensory spaces are important
especially where large numbers of people are
Often but not Always Observed in Autistic Individuals
(remember each autistic person is different)
Difficulty reading emotions/body language
Laughs unexpectedly
Odd facial expressions, speech tone, or wording
High levels of honesty
Very literal language
Socially isolated
Highly intuitive
Keeps talking when others aren’t interested
Avoids touch/eye-contact
Delayed responses
Autism Plus” vs.
Autism Pure”
Researchers and clinicians used to think that being on the
autism spectrum meant just being autistic. Clinicians used
to be told that they shouldn’t diagnose autism alongside
other neurotypes like ADHD.
We now recognize that autistic people are more likely than
typically-developing individuals to qualify for many other
diagnoses, like ADHD, anxiety, depression, sleep problems,
gastrointestinal problems, intellectual disability, and more
(Croen et al., 2015; Lai et al., 2019; Rydzewska et al., 2018).
Autism is not necessarily “pure”; it is often “plus” something
Autistic people might qualify for these co-occurring
diagnoses because of shared biological factors that also
cause autism, or because of stress from the negative life
experiences autistic people often have.
These co-occurring challenges might also affect autistic
people’s ability to function in conferences and meetings.
For example, anxiety could be a major barrier in the
overwhelming conference environment!
How do we describe ourselves?
Autism Spectrum Disorder (ASD): a clinical term to describe the autism spectrum
Autism: A simple and straightforward term that is highly appropriate for everyday
Autism Spectrum Development: A cultural term that respects autistic perspectives and
moves beyond the clinical
Autism Spectrum Difference: A cultural term that respects autistic perspectives and
moves beyond the clinical
“Words create worlds” Dr. David Cooperrider
How do we describe ourselves?
Person-First (e.g., “I am a person with autism”): used by some in the community
Identity-First (e.g., “I am autistic”): used by many in the community. There have been at
least two studies showing that identity-first language is preferred by more individuals on
the autism spectrum than person-first language, at least in online studies (Kapp et al.,
2013; Kenny et al., 2016).
The phrase “person on the autism spectrum” is used by many in the community, and
according to an online study (Kenny et al., 2016), it attracts about the same level of
support as identity-first language. Furthermore, this phrase may be relatively inoffensive
to most supporters of either identity-first or person-first language.
Please note that respectful terminology changes person-to-person and even within a
society that is becoming more inclusive of all people. It is important to ask an actual
autistic person what is acceptable to them.
“Words create worlds” Dr. David Cooperrider
How do we describe ourselves?
🚫High Functioning: clinical term to describe those who pass as ‘normal’ in many aspects of their lives
🚫Low Functioning: clinical term to describe those on the spectrum who appear to have more obvious
differences such as differences in verbal ability, cognitive ability, etc.
No Functioning words: Amethyst explains why functioning labels are problematic. This is a 10:24
video. If short on time, please watch to 2:18
How do we
We are a diverse group of people. We
don’t just vary from one another along
one dimension – a single spectrum –
but along many different dimensions.
We are part of a multidimensional
autism constellation.
We also vary in our opinions. Some of
us identify strongly with our autism and
view ourselves as part of a community
of autistic people. Some of us disagree
and choose not to identify with autism
or an autistic community.
How do we
Some of us see society as being
disabled rather than us being disabled.
This simply means that society often
fails to accept and include us, and
instead pushes us to the margins.
Some of us view ourselves as disabled
and want society to understand the
struggles we may have on a daily basis,
especially with co-occurring conditions
that often accompany autism
Some of us accept parts of both
perspectives, seeing the challenges we
encounter as the result of an interaction
between our own characteristics and
aspects of society
Some of us have different perspectives
Content Warning:
autistic individuals being
real, funny, and using
some swear words
Negative Judgements and the
Double Empathy Problem
Research shows that autistic people are rapidly judged in
negative ways by others (Sasson et al., 2017). These negative
judgements aren’t based on what autistic people say, but how
we say it – they disappear when transcripts of our speech are
shown instead of videos and pictures.
While researchers have long said autistic people struggle to
understand other people’s thoughts and perspectives, the idea
of the “double empathy problem” suggests that neurotypicals
also struggle to see the autistic point of view (Milton, 2012).
This claim has been supported by research (Edey et al., 2016;
Heasman & Gillespie, 2017).
This is why it’s important to make a special effort to see things
from the autistic point of view.
Are Autistic Individuals Disinterested in
Engaging Socially with Others?
It is a MYTH that people with autism lack
interest in interacting with others
Many autistic people, children and adults
alike, do want to interact socially with others,
but lack the skills needed to interact
Many autistic people have had experiences of
social victimization or exploitation, or simply
of being ignored, that can make us anxious or
feel like giving up on social interaction
Many autistic people can become
overwhelmed or anxious in unfamiliar
environments, which may reduce interest in
new social horizons
How might we communicate
at the meeting?
Our communication abilities in social environments runs the spectrum
Some of us may be very verbal
Some of us may only hold short conversations
Some of us may be very quiet
Some of us may have trouble distinguishing speech in noisy
Some of us may use eye contact differently when communicating
Some of us may seem confused in a conversation when we become
distracted by stimuli around us
Some of us may have trouble finding the right time to break into a
Some of us may be loud or repeat our statements
It is important to understand the differences in our communication so you
don’t take it personally
What are some stressors
that we might encounter?
Bright lights; vertical lights; bright colours; lights that wash
out presentation slides; flickering movements; loud
sounds; sudden sounds; soft but irritating sounds; smells;
microphone feedback or distortion; the feel of items
Long waits; close contact with others; feeling forced to
have conversations with people around us
Feeling left out or judged; inability to hear speaker;
feeling rushed;
Not knowing where to go; not having someone to answer
questions; feeling overwhelmed
Not being able to leave a space quickly
What might we
do under stress?
Shutdown: lose the ability to
communicate temporarily until we
can feel less overwhelmed
Meltdown: react by crying, being
verbal (e.g., shouting, screaming),
and sometimes acting out
Leave a room or conversation
Look for a quiet space
How might you support
us at the meeting?
Be patient and compassionate
Ask us if you can help us
Wait until we approach you if we are wearing identifying
badges that are yellow or red
Don’t take our behaviour personally (remember the
double empathy problem: the reason for our behaviour
may not be what you think it is!)
Guide us to a quiet space to answer our questions
Show us where the sensory space or autistic social space
is located
If someone is having a meltdown, guide without touching.
Use a soft voice. Do not bombard with many ideas or
directions. Sit beside; get out of their face.
Does everyone wish autism could be
No. The
views autism as
a minority
identity that is
an important
part of human
diversity like
race or sexuality
A 1:23 video
about us
without us
about us
without us
It is important moving forward to understand
autism through the eyes of those of us who are
actually autistic
Books, videos, lectures etc. should all be
considered from the first-person perspective of
the autistic individual and remember...
Autism is a spectrum or constellation and
therefore one person’s just one
person’s experience
Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., Sidney, S., & Kripke, C. (2015). The health status of adults on the autism spectrum.
Autism, 19(7), 814–823.
Edey, R., Cook, J., Brewer, R., Johnson, M. H., Bird, G., & Press, C. (2016). Interaction takes two: Typical adults exhibit mind-blindness towards
those with autism spectrum disorder. Journal of Abnormal Psychology, 125(7), 879–885.
Heasman, B., & Gillespie, A. (2018). Perspective-taking is two-sided: Misunderstandings between people with Asperger’s syndrome and
their family members. Autism, 22(6), 740–750.
Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2013). Deficit, difference, or both? Autism and neurodiversity. Developmental
psychology, 49(1), 59.
Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism?
Perspectives from the UK autism community. Autism, 20(4), 442-462.
Lai, M.-C., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W., … Ameis, S. H. (2019). Prevalence of co-occurring mental health diagnoses
in the autism population: A systematic review and meta-analysis. The Lancet Psychiatry, 6(10), 819-829.
Milton, D. E. M. (2012). On the ontological status of autism: The “double empathy” problem. Disability and Society, 27(6), 883–887.
Rydzewska, E., Hughes-McCormack, L. A., Gillberg, C., Henderson, A., Macintyre, C., Rintoul, J., & Cooper, S. A. (2018). Prevalence of sensory
impairments, physical and intellectual disabilities, and mental health in children and young people with self/proxy-reported autism:
Observational study of a whole country population. Autism, 23(5), 1201–1209.
Sasson, N. J., Faso, D. J., Nugent, J., Lovell, S., Kennedy, D. P., & Grossman, R. B. (2017). Neurotypical peers are less willing to interact with
those with autism based on thin slice judgments. Scientific Reports, 7: 40700.
To cite this resource, use this citation: TC Waisman, Dena Gassner, Kristen Gillespie-Lynch, Jac Den Houting, Steven Kapp, Brett Nachman,
Stephen Shore, Patrick Dwyer. (2020). Autism Training for INSAR 2020 developed by INSARs 2020 Autistic Researchers Committee.
... The current findings also suggest that anti-stigma interventions focused on autism should not shy away from a discussion of the behavioral challenges that can be associated with autism. Such interventions should instead help people understand that these behavioral challenges often arise from difficulty communicating (e.g., Carr and Durand 1985) and may be best addressed by giving the person space to calm down and then developing strategies to promote more effective communication in collaboration with the autistic individual (Prizant and Fields-Meyer 2015;Waisman et al. 2020). ...
Full-text available
Little remains known about the degree to which autistic university students are stigmatized relative to students with other diagnoses. We conducted an online survey with students in New York City (n = 633) and Beirut (n = 274). Students with diagnoses that were perceived as dangerous (e.g., psychopathy) were more stigmatized than students with diagnoses that were perceived as less dangerous (e.g., autism). Disruptive autistic behaviors (described via vignettes) evoked more stigma than withdrawn behaviors. Perceived dangerousness predicted autism stigma. Greater acceptance of inequality, less openness, and lower cognitive empathy co-occurred with heightened stigma towards most conditions. Diagnostic labels were typically less stigmatized than behaviors. Findings suggest that interventions are needed to decrease stigma towards varied diagnoses in collegiate communities.
Full-text available
This study investigated the comorbid conditions in a whole country population of children/young people aged 0-24 years with and without autism. Data were drawn from Scotland's Census 2011. We calculated the percentage with autism, their extent of comorbid conditions, odds ratio (with 95% confidence intervals) of autism predicting comorbidities, adjusted for age and gender, and odds ratio for age and gender predicting comorbidities within the cohort with autism. A total of 25,063/1,548,819 (1.6%) had autism: 19,880 (79.3%) males and 5183 (20.7%) females. Autism had an odds ratio of 5.4 (5.1-5.6) for predicting deafness/partial hearing loss, odds ratio of 8.9 (8.1-9.7) for blindness/partial sight loss, odds ratio of 49.7 (38.1-64.9) for intellectual disabilities, odds ratio of 15.7 (13.4-18.5) for mental health conditions, odds ratio of 15.8 (14.1-17.8) for physical disability and odds ratio of 3.9 (3.8-4.0) for other conditions. Females with autism were more likely to have each additional condition than males, including intellectual disabilities, suggesting they may have more severe autism than males and adding evidence that autism may be currently underdiagnosed in more intellectually able females. These conditions are disabling and have a significant impact on long-term quality of life; their coexistence with autism adds extra complexity. It is important to raise clinicians' awareness of this extent of comorbidity, and to have accurate prevalence data to plan prevention and intervention measures, and to follow health inequality trends.
Full-text available
Misunderstandings are social in nature, always having two sides. Yet the misunderstandings experienced by people with Asperger's syndrome are usually studied in terms of the individual with a diagnosis, with less emphasis on social relations. We use a two-sided methodology to map out misunderstandings within 22 dyads (n = 44) consisting of people with Asperger's syndrome and their family members. Both sides of the relationship were asked about 12 topics in terms of one's rating of Self, one's rating of Other and one's predicted rating by Other. The findings show that people with Asperger's are able to predict lower scores from family members, despite disagreeing with their view, and that family members often over-estimate the extent to which their relatives with Asperger's syndrome are egocentrically anchored in their own perspective. The research demonstrates that a two-sided methodology is viable, and it uses it to identify how representations of Asperger's syndrome can both support and hinder social understanding within relationships affected by Asperger's.
Full-text available
Individuals with autism spectrum disorder (ASD), including those who otherwise require less support, face severe difficulties in everyday social interactions. Research in this area has primarily focused on identifying the cognitive and neurological differences that contribute to these social impairments, but social interaction by definition involves more than one person and social difficulties may arise not just from people with ASD themselves, but also from the perceptions, judgments, and social decisions made by those around them. Here, across three studies, we find that first impressions of individuals with ASD made from thin slices of real-world social behavior by typically-developing observers are not only far less favorable across a range of trait judgments compared to controls, but also are associated with reduced intentions to pursue social interaction. These patterns are remarkably robust, occur within seconds, do not change with increased exposure, and persist across both child and adult age groups. However, these biases disappear when impressions are based on conversational content lacking audio-visual cues, suggesting that style, not substance, drives negative impressions of ASD. Collectively, these findings advocate for a broader perspective of social difficulties in ASD that considers both the individual’s impairments and the biases of potential social partners.
Full-text available
Recent work suggests that we are better at interpreting the movements of others who move like us, and that individuals with Autism Spectrum Disorder (ASD) move in a quantifiably different way from typical individuals. Therefore, ‘social impairments’ exhibited by individuals with ASD may, at least in part, represent a failure by typical individuals to infer the correct mental states from the movements of those with ASD. To examine this possibility, individuals with ASD and typical adults manually directed two triangles to generate animations depicting mental state interactions. Kinematic analysis of the generated animations demonstrated that the participants with ASD moved atypically, specifically with increased jerk compared to the typical participants. In confirmation of our primary hypothesis, typical individuals were better able to identify the mental state portrayed in the animations produced by typical, relative to autistic individuals. The participants with ASD did not show this ‘same group’ advantage, demonstrating comparable performance for the two sets of animations. These findings have significant implications for clinical assessment and intervention in ASD, and potentially other populations with atypical movement.
Full-text available
In recent decades there has been much debate over the ontological status of autism and other neurological ‘disorders', diagnosed by behavioural indicators, and theorised primarily within the field of cognitive neuroscience and psychological paradigms. Such cognitive-behavioural discourses abstain from acknowledging the universal issue of relationality and interaction in the formation of a contested and constantly reconstructed social reality, produced through the agency of its ‘actors'. The nature of these contested interactions will be explored in this current issues piece through the use of the term the ‘double empathy problem', and how such a rendition produces a critique of autism being defined as a deficit in ‘theory of mind', re-framing such issues as a question of reciprocity and mutuality. In keeping with other autistic self-advocates, this piece will refer to ‘autistic people', and ‘those who identify as on the autism spectrum', rather than ‘people with autism'.
Full-text available
The neurodiversity movement challenges the medical model's interest in causation and cure, celebrating autism as an inseparable aspect of identity. Using an online survey, we examined the perceived opposition between the medical model and the neurodiversity movement by assessing conceptions of autism and neurodiversity among people with different relations to autism. Participants (N = 657) included autistic people, relatives and friends of autistic people, and people with no specified relation to autism. Self-identification as autistic and neurodiversity awareness were associated with viewing autism as a positive identity that needs no cure, suggesting core differences between the medical model and the neurodiversity movement. Nevertheless, results suggested substantial overlap between these approaches to autism. Recognition of the negative aspects of autism and endorsement of parenting practices that celebrate and ameliorate but do not eliminate autism did not differ based on relation to autism or awareness of neurodiversity. These findings suggest a deficit-as-difference conception of autism wherein neurological conditions may represent equally valid pathways within human diversity. Potential areas of common ground in research and practice regarding autism are discussed. (PsycINFO Database Record (c) 2012 APA, all rights reserved).
Background: Co-occurring mental health or psychiatric conditions are common in autism, impairing quality of life. Reported prevalences of co-occurring mental health or psychiatric conditions in people with autism range widely. Improved prevalence estimates and identification of moderators are needed to enhance recognition and care, and to guide future research. Methods: In this systematic review and meta-analysis, we searched MEDLINE, Embase, PsycINFO, Scopus, Web of Science, and grey literature for publications between Jan 1, 1993, and Feb 1, 2019, in English or French, that reported original research using an observational design on the prevalence of co-occurring mental health conditions in people with autism and reported confirmed clinical diagnoses of the co-occurring conditions and autism using DSM or ICD criteria. For co-occurring mental health conditions reported with at least 15 datapoints (studies), we assessed risk of bias and we determined pooled estimates of prevalence for different co-occurring conditions in autism using random-effects models, and descriptively compared these with prevalence estimates for the general population from the literature (post hoc). We investigated heterogeneity in prevalence estimates using random-effects meta-regression models. This systematic review is registered with PROSPERO, CRD42018103176. Findings: Of 9746 unique studies identified, 432 were selected for full-text review. 100 studies were eligible for inclusion in our qualitative synthesis, of which 96 were included in our meta-analyses. 11 categories of co-occurring conditions were investigated, of which eight conditions were included in the meta-analyses and three were descriptively synthesised (ie, trauma and stressor-related disorders, substance-related and addictive disorders, and gender dysphoria). From our meta-analyses, we found overall pooled prevalence estimates of 28% (95% CI 25-32) for attention-deficit hyperactivity disorder; 20% (17-23) for anxiety disorders; 13% (9-17) for sleep-wake disorders; 12% (10-15) for disruptive, impulse-control, and conduct disorders; 11% (9-13) for depressive disorders; 9% (7-10) for obsessive-compulsive disorder; 5% (3-6) for bipolar disorders; and 4% (3-5) for schizophrenia spectrum disorders. Estimates in clinical sample-based studies were higher than in population-based and registry-based studies, and these estimates were mostly higher than those in the general population (post hoc). Age, gender, intellectual functioning, and country of study were associated with heterogeneity in prevalence estimates, yet remaining heterogeneity not explained was still substantial (all I2 >95%). Interpretation: Co-occurring mental health conditions are more prevalent in the autism population than in the general population. Careful assessment of mental health is an essential component of care for all people on the autism spectrum and should be integrated into clinical practice. Funding: Academic Scholars Awards, Department of Psychiatry, University of Toronto; O'Brien Scholars Program, Slaight Family Child and Youth Mental Health Innovation Fund, and The Catherine and Maxwell Meighen Foundation via the Centre for Addiction and Mental Health Foundation.
Recent public discussions suggest that there is much disagreement about the way autism is and should be described. This study sought to elicit the views and preferences of UK autism community members - autistic people, parents and their broader support network - about the terms they use to describe autism. In all, 3470 UK residents responded to an online survey on their preferred ways of describing autism and their rationale for such preferences. The results clearly show that people use many terms to describe autism. The most highly endorsed terms were 'autism' and 'on the autism spectrum', and to a lesser extent, 'autism spectrum disorder', for which there was consensus across community groups. The groups disagreed, however, on the use of several terms. The term 'autistic' was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; 'person with autism' was endorsed by almost half of professionals but by fewer autistic adults and parents. Qualitative analysis of an open-ended question revealed the reasons underlying respondents' preferences. These findings demonstrate that there is no single way of describing autism that is universally accepted and preferred by the UK's autism community and that some disagreements appear deeply entrenched. © The Author(s) 2015.
Compared to the general pediatric population, children with autism have higher rates of co-occurring medical and psychiatric illnesses, yet very little is known about the general health status of adults with autism. The objective of this study was to describe the frequency of psychiatric and medical conditions among a large, diverse, insured population of adults with autism in the United States. Participants were adult members of Kaiser Permanente Northern California enrolled from 2008 to 2012. Autism spectrum disorder cases (N = 1507) were adults with autism spectrum disorder diagnoses (International Classification of Diseases-9-Clinical Modification codes 299.0, 299.8, 299.9) recorded in medical records on at least two separate occasions. Controls (N = 15,070) were adults without any autism spectrum disorder diagnoses sampled at a 10:1 ratio and frequency matched to cases on sex and age. Adults with autism had significantly increased rates of all major psychiatric disorders including depression, anxiety, bipolar disorder, obsessive-compulsive disorder, schizophrenia, and suicide attempts. Nearly all medical conditions were significantly more common in adults with autism, including immune conditions, gastrointestinal and sleep disorders, seizure, obesity, dyslipidemia, hypertension, and diabetes. Rarer conditions, such as stroke and Parkinson's disease, were also significantly more common among adults with autism. Future research is needed to understand the social, healthcare access, and biological factors underlying these observations. © The Author(s) 2015.