The following is a
presentation that I have given for the past two years at autism conferences.
This presentation tries to look at autism from the perspective of how the
symptoms of autism mesh with culture and society at large. Since cultures are
different, and social norms differ in different parts of the United States, I
must alter this presentation depending on where I am giving it.
Therefore, instead of having a written transcript for my presentation, I have published an outline that I wrote for this presentation when I presented this at the Georgia Autism Conferences’ 1st annual autism conference in Duluth, Georgia.
-- Introduction
-- Tony Atwood’s “cure” for
autism
-- Autistic individuals can be
cured if they are allowed to spend their entire lives in their own rooms, as
they can be in complete control of their environments
-- Autistic symptoms should not
just be measured by their nature or severity, but how they mesh with culture
and society at large
-- Autistic people do not just
experience these issues in a vacuum, but in the context of the families,
communities, societies, and cultures we live in
-- Reason behind presentation
title: Title is a play on the old Judy Blume book “Are You There, God? It’s Me,
Margaret,” which made people rethink cultural ideas of the appropriateness of
discussions of puberty
-- A similar questioning of
cultural ideas often happens when attempting to help autistic individuals
-- Should not be taken as an
argument that any ideas are bad or good, however
-- Theories of culture and society
-- Marvin Harris’ theory of
culture and how cultural and religious rules exist in order to help the people
in those cultures survive
-- Pamela Wolfberg’s theory of
“play culture”—how the way children play and interact with each other
constitute a distinct “culture”
-- Brenda Smith Myles’ theory of
the “hidden curriculum”—that societies and cultures all have a series of
unwritten social rules that they expect their members to follow
-- Rules typically differ among
different cultures, and sometimes for different people inside a culture based
on age, gender, status, etc.
-- Example of such differences:
in the Australian movie “The Black Balloon,” a teenage boy in swim class is
told by his teacher that he must wear a Speedo swim suit as part of the dress
code for this class and is forced to take off his swim trunks, whereas in
America we often consider it inappropriate for males to wear Speedos when
swimming
-- Different theories of good or
ideal cultures exist (e.g. agrarianism, anarcho-primitivism, green anarchism)
-- Our
beliefs are cultural, not universal
-- People view the world
differently, and different cultures have different ways of seeing and doing
things
-- We are not the world, but a
culture of the world, in our case, Americans, and for most of the audience,
residents of Georgia
-- Autistic social issues and society
-- Social rules, written and
unwritten, exist to make people feel comfortable in the different social
settings they experience on a regular basis and to prevent as much social
discomfort as possible
-- People without autism in a
culture often have things that mutually make them comfortable and
uncomfortable, and thus know those rules instinctively because they know
other’s comfort levels and don’t want to make anyone uncomfortable when
socializing
-- This theory can explain why
autistic people don’t always know unwritten rules the way non-autistic people
do, as they do not feel the same comforts and discomforts non-autistics do and,
with their theory of mind deficits, often lack the ability to understand other
people’s comforts and discomforts and instinctively sense them
-- Note: Rules can be taught,
but people don’t always since they expect the autistic person to know them
without instruction
-- When autistic people break
social rules, others feel embarrassed around them but the autistic person does
not always share this embarrassment
-- Simple example: Autistic
individuals often have a hard time not picking their nose in front of others,
but at the same time, many autistic people don’t feel uncomfortable when others
pick their nose in front of them
-- What makes people
uncomfortable and comfortable differ between social contexts and social groups,
and different people
-- In high school, my friends
were mostly girls, and we often discussed things that would make many other people
uncomfortable—those same things we would consider inappropriate in many
settings
-- Autistic people, however,
often do not feel the same comforts and discomforts as others do
-- In addition, I have surmised
that the reason why autistic individuals do not pick up social unwritten rules
when others do is because they do not have the same shared comforts and
discomforts as others in their societies
-- Example: If you have never
felt discomfort when people pick their nose in front of you, as I have experienced,
how can you instinctively know others feel the same way unless you have been
told first?
-- Social rules differ for
people based on their age, gender, social situation, etc.
-- Thus, a person’s social
success in one social setting CANNOT always be used to assume they will succeed
in another setting
-- This is a routine assumption
among teachers: that social success or difficulty in school automatically
implies success or difficulty in the outside world
-- “When In Rome” myth: in
reality, Romans would have different social rules for outsiders and would
expect you to follow them—if you did as the Romans did, you would be thought of
as inappropriate
-- Social rules thus differ in
different contexts and autistic people often cannot always understand those
differences
-- Social rules can negatively
impact autistic individuals as well
-- Example: Puberty struggles
and adolescence are often considered an inappropriate discussion topic because
many people feel uncomfortable discussing those experiences outside of a close
circle of friends and/or family
-- The physical/mental changes
of adolescence can be difficult for boys and girls with autism to cope with, such
as hormonal changes, menstruation, sexuality, etc., yet we live in a culture
that restricts openly discussing issues that may be highly ruling their lives
-- Social changes in
adolescence can impact autistic individuals as well
-- Our culture also associates
specific behaviors with specific motives, some positive and some negative
-- In the movie “Elf,” Buddy
the Elf often behaves in ways that are perceived by others one way based on
cultural assumptions (such as spying on a woman singing in a shower), yet Buddy
performs them for totally different reasons
-- Autistic people often show
behaviors for totally different reasons than the conventional cultural
assumptions we have for such behaviors
-- Example: Tara Tuchel tells a
story about an autistic boy who had a co-ed sleepover on his 13th
birthday that did not result in any mischief occurring, and despite our
assumption that mischief would emerge in a co-ed sleepover, the autistic boy
felt uncomfortable since he didn’t know if the girls would destroy the design
of his room
-- Another example: Many
autistic individuals in their failure to understand social boundaries, in their
attempts to initiate social interaction, sometimes might bother others and get
accused of stalking, yet they perceive themselves as just initiating social
interaction
-- When autistic people break
such social rules, they often cause others to feel this discomfort—those same
autistic individuals, however, do not always feel that discomfort and might not
always be aware they have caused others discomfort
-- Autistic sensory issues and society
-- Lights and sounds bother
individuals with autism, many of these are products of our society
-- All individuals would be
bothered by sounds loud enough or lights bright enough, but autistic
individuals have a different threshold than neurotypical individuals
--
Our eyes all hurt if we looked directly at the sun!
-- An autistic individual from
India told me that hearing sensitivities are a more major issue for autistic
Indians due to the loud family gatherings and parties that are commonplace in
Indian culture and immortalized in movies about India
-- Sounds are not created
equal—they play on different frequencies and sensitive hearing is often
lopsided, meaning that autistic individuals hear certain sounds louder than
others even if they are the same volume
-- Dr. Guy Berard, the creator
of AIT would often record these differences on audiograms as “peaks” and
“valleys”
--
Windows Media Player Frequency demonstration
-- Tactile issues and society
--
Dress codes and clothing standards are cultural
-- Example: A British autism
specialist explained that in England, uniform dress codes are mandatory by
federal law and that schools do not receive public money if they do not have
dress codes, and that uniform dress codes spare autistic individuals from
having to worry about dressing fashionably to school
-- Can anyone imagine how many
sensory headaches this causes among autistic people there?
--
Ideas of personal space
-- My high school anthropology
teacher once pointed out that our preference of personal space is not a human
universal, but has been noted by anthropologists as a distinctly American
trait!
--
The social and sensory issue of hugging
-- Some autistic people have a
hyposensitivity to touch and hug other people
-- Their motives are innocent
yet they are not always viewed that way by others
-- School and autism
--
School causes a lot of stress in the lives of people with autism
--
School is also cultural and societal
-- Our ideas that school is
essential for everyone is societal and cultural, and theoretically, is not
actually necessary
-- Renaissance Faire story: a
group of living historians re-enacting 16th century Ireland
explained that the people at that time valued homeschooling over schooling and
that few kids went to school, the opposite of today’s values
-- School’s distinct structure
often causes difficulties for autistic students regardless of their actual
intelligence or ability
-- Autistic people may be smart
but lack “school smarts”—such as the ability to take tests and exams properly,
take notes, participate in group projects, which are not related to any subject
or knowledge yet impact a student’s performance in school
-- I once acted as a scribe in
high school for a boy who could not hold a pen or pencil due to developmental
issues—he was quite intelligent yet could not always show his intelligence due
to his inability to write
-- The “play culture” of kids is
created to remain hidden as much as possible from adults around ages 7-9,
causing social isolation among other kids in school
-- With kids, socializing is
what happens the moment the adults LEAVE the room!
-- Teachers often try to teach
social rules to kids with autism to fit in that
-- The social rules of kids and
teenagers are hidden from the view of teachers yet some teachers believe they
can teach those skills to autistic individuals
-- You CANNOT use your own
childhood and high school experiences as a basis for helping autistic kids—the
rules and times have changed since when you were a kid
-- If you want to help autistic
kids socialize you need to find out what the social expectations are among
neurotypical kids yourself at the age group you want that child to socialize
with
-- I worked at a daycare for
1.5 years and learned a lot of unwritten rules the kids enforced with each
other that the other teachers were totally unaware of, such as:
-- Expected reciprocity
-- Suspension of self for the leader of the group
-- I later went back to public
high school and was instructed on the unwritten rules for appropriate behavior
by a group of girls that became my friends, such as:
-- Cell phone rules
-- Conversation boundaries and
when conventional boundaries were violated in the name of teenage rebellion
-- Social regulations on bathing suits
-- Remember: my parents had no
idea ANY of these rules existed!
--
Demonstration of social rule gap: popular music medley on recorder
-- Raise your hand if you know
the song, and we’ll keep playing until everyone raises their hand
-- Conclusion: Autistic symptoms routinely mesh with
culture and society, and autistic individuals do not experience their symptoms
in a vaccuum, but in the context of the cultures and societies they live in. To
help autistic individuals with autism it can sometimes be necessary to think
out the reasons why certain cultural rules and assumptions exist, and to think
outside our cultural and societal box. As a person with autism, I have often
pondered the reasons why certain social rules exist, and why I couldn’t always
understand or pick them up as easily as my neurotypical counterparts.
-- Final remarks and questions