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

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Abstract

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?
Autism occurs
in about
1 in 59 people
(Centers for Disease Control
and Prevention, 2019 – but
different studies report
different numbers, due to
methodological
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,
etc.
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
gathered
AUTISM IS A SPECTRUM...OR EVEN A
CONSTELLATION WITH MANY DIFFERENT
DIMENSIONS…WE ARE ALL DIFFERENT
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
else.
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!
Autism
Depression
Anxiety
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
conversation
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
view
ourselves?
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
view
ourselves?
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
Myth
busting
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.
Myth
Are
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
effectively
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
environments
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
conversation
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
physically
Leave a room or conversation
abruptly
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
cured?
No. The
neurodiversity
movement
views autism as
a minority
identity that is
an important
part of human
diversity like
race or sexuality
A 1:23 video
Nothing
about us
without us
Nothing
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 experience...is just one
person’s experience
References
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). ...
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