Why are so many autistic adults undiagnosed
fun fact about
me i’m autistic just from how i’m
presenting myself to you
right now could you tell probably not
up until a couple years ago i couldn’t
either however
i was lucky i had access to tons of
resources which gave me the opportunity
to figure out that
my brain isn’t broken just running on
a different operating system
imagine trying to navigate an iphone
with instructions for
an android also everyone just thinks you
have a
weird broken android and only people
with specialized knowledge can even
recognize an iphone as a different
system
basically it’s society constantly
telling you that you’re
existing wrong for taking different
paths to meet the same
needs or goals that’s what not knowing
your autistic
is like now
try to imagine how many other autistic
adults
still feel that way because they don’t
have the same access
to medical professionals or information
guess what you can’t because we have no
idea
how many undiagnosed autistic adults
there are at this time
hi i’m kim and today i’ll unravel why so
many autistic adults are on diagnose
this comes in two main parts
not being able to figure out your
autistic and why getting a diagnosis can
be
so difficult someone in your life
could very well be an iphone struggling
to fake their way through life
as an android that person can even be
you so before we get started
i’m going to describe people like me as
autistic people
instead of as people with autism since
that’s the language most people in the
autistic community
prefer you see being autistic
isn’t really separable from who we are
as people
it would be ridiculous to say for
example that i am in my
person with chineseness as if i
sometimes leave my ethnicity at home
when i leave the house
in the same way it doesn’t make sense to
say with
autism i’m chinese
i’m autistic
firstly what even is
autism well like i previously described
it’s a
different brain operating system for
autistic people this means we typically
think
communicate perceive and generally
interact with the world
and ourselves differently than allistic
people
allistic is the word for non-autistic
these differences lie in areas such as
sensory and information processing
contrary to popular belief there isn’t
something inherently
wrong with us we’re just
different for instance the current model
of autism characterizes us
as having social deficits but
a study focused on social interactions
between autistic adults
indicates that we can usually
communicate with each other just fine
even if it may sound weird and
unintuitive to
holistic folks news flash that’s what
you sound like
to us however we’re expected to
constantly adjust how we act
while holistic society typically doesn’t
accommodate for our differences
that lack of accommodation is the real
source behind a lot of the issues that
adult autistics face not something
that’s inherently wrong
with us so let’s look back to the
beginning
why do so many autistic adults not know
they’re
autistic simple they don’t know what
autistic people
can look like
imagine an autistic person one that
isn’t
me or any other specific person
hold that person in your mind
what kind of person do you see how do
they
behave odds are you’re going to think
of a north american white boy or man
some people may imagine a non-verbal boy
who needs help feeding himself and
screams to communicate
while others may think of a man who
doesn’t care for social norms lacks
empathy but is
brilliant at math typically though
it’s a white guy
so if you’re a person of color or
someone who isn’t a man
and you don’t identify with either of
those stereotypical behavior templates
you’re not likely to realize you’re
autistic based on mainstream ideas
are you
let’s say you’re an autistic person who
doesn’t identify with those stereotypes
but you’re questioning
why you’re different from most people
around you
you have the privilege of good medical
access so you go
to a psychiatrist medical professionals
internalize and perpetuate the same
misconceptions of autistic people
as everyone else which means that you
could end up with the diagnosis
of borderline personality disorder or
obsessive-compulsive disorder while
autistic people can have these mental
illnesses they typically aren’t being
given the full picture of who they are
or are being misled entirely
a lot of people get stopped there but
i’m going to be
generous for the sake of example
regardless of whether you have any
previous diagnoses or not
let’s say you somehow end up learning
that many ideas of what autistic people
are like
are stereotypes not facts
that doesn’t mean you’ll be able to
connect being autistic back to yourself
especially when there’s so much
variation in autistic behaviors
like i was reading autistic content on
a semi-regular basis for over a year
before i even considered that hey
maybe this applies to me too
contrary to popular belief autistic
people
are just as diverse as holistic people
for example i don’t like fireworks
they’re too bright and loud for me since
i tend to be hypersensitive
to light and sound but other autistic
folks may find the noise and lights
soothing
navigating all of this information can
be difficult
especially if you process information
differently which
is characteristic of many autistic folks
or
if you’ve had poor access to education
that’s also assuming you have consistent
internet access
since most autistic resources are online
and that you can read english since
that’s the language most resources are
in
my last point here is probably one of
the most significant factors
and is called masking now
what’s masking well it’s exactly what it
sounds like
many autistic people tend to put on an
holistic mask
to camouflage ourselves in order to be
accepted by society
this can be motivated by wanting to
build relationships but
oftentimes autistic adults learn to act
holistic from very early childhood
because they are disciplined ostracized
or abused otherwise
abused as in it’s not irregular for us
to be mistreated physically
or psychologically as a way to force us
into acting
holistic imagine
being a young child and undergoing
significant pain because your parents or
teachers think you’re communicating
wrong
they don’t believe you when you say
it hurts making eye contact
can be physically painful for some
autistic people
but in many cases they’re forced to do
it
anyway this is reality
for many of us it’s not about how
we feel it’s just about making us look
normal
think back to your childhood and how
kids treated those
who were perceived as weird
not great so
a lot of autistic folks consciously and
unconsciously modify how we present
ourselves to prevent
or at least reduce the degree to which
we experience this kind of negative
judgment
these behaviors can be so deeply
ingrained that we often have no idea who
we really are
until we figure out we’re autistic if
ever
masking tends to be especially in force
in people of color
since we often don’t get the same kind
of behavioral leeway as
white folks this is particularly evident
in how black autistic people are treated
for example if a white autistic person
has a panic attack in public because
they’re experiencing
sensory overload they’re over stimulated
essentially
they’re likely to be interpreted as
mentally ill
however if a black autistic person does
the same
they’re much more likely to be perceived
as
a threat in general both
autistic children and people of color
have to behave in more socially
normative ways
in order to get the same treatment as
less normative white autistic
people okay
now that we’ve covered some reasons why
autistic adults may not figure out their
autistic let’s move on to point
two obtaining an autism diagnosis as an
adult is
incredibly inaccessible before we
jump into things know that not every
autistic person wants or
needs a professional diagnosis if i
hadn’t actively pursued one i almost
definitely
wouldn’t have ever gotten one the first
reason for why an adult diagnosis is
hard to attain is that
autism is often viewed as a children’s
condition which is
honestly quite silly since like what do
people think happens to autistic
children when we grow up
since we apparently stop existing once
we hit the age of majority
most resources are allocated to autistic
children and youth
at this point any region that has
any resources exclusively for autistic
adults is
doing pretty well which is kind of sad
next off starting the process of seeking
out an adult diagnosis can
only really begin if there’s a medical
professional in your area
who diagnoses autistic adults
less populated areas as well as regions
with especially underfunded mental
health care
are unlikely to have someone unable to
diagnose us
two other prominent barriers to adult
diagnosis are
cost and waiting less time here in the
lower mainland
for example few medical professionals
perform adult autism assessments and
many of them only do so through private
funding
these assessments can cost between two
thousand
to four thousand dollars when
i contacted a private clinic when i was
seeking a diagnosis
they quoted a price within that range as
well as a wait time of
at least three months so that’s the wait
time for when you’re
throwing thousands of dollars at them in
comparison the handful of doctors that
are covered by provincial health care
have a typical waitlist time of one to
two
years remember all of this is just to
get
assessed there’s no guarantee of getting
diagnosed
even if you pay thousands of dollars or
wait a couple of years the real kicker
is that the system is probably one of
the better ones
out there public coverage is available
the private waitlist time is less than
half a year and
above all it exists
furthermore the diagnostic criteria is
based almost exclusively off
surprise surprise white boys so
even if you’re pretty sure you’re
autistic medical professionals may
shut you down since many of them see
autistic people it’s all fitting within
a neat
little box of autism built off of white
boy
experiences instead of as people that
are as diverse and varied as holistic
folks
i know autistic adults who want to get a
referral to a diagnostician from their
family
doctor only to be told that they can’t
be autistic because they’re a woman or
they’re asian
or they’re black that’s how
explicit the bias can be
remember how i talked about masking
earlier
yeah that plays a role in lack of
diagnosis
too many autistic adults learn
and observe socially normative behavior
in order to
fake it many of us become
so good at it that doctors don’t believe
we’re autistic
this mask often becomes so
instinctive that despite how unnatural
it may be
it’s not really something you can just
take off
it takes conscious effort and energy
to learn to be yourself when your family
teachers
and society as a whole have taught you
that being
yourself is unacceptable
most of the issues i’ve covered
ultimately has to do
with people having wrong ideas of what
autistic people are like
in real life many people don’t realize
that
an autistic adult can look like or
behave like
this instead they just stagnate in their
assumptions
since they perceive autistic people as
something that exists
but is something they’ll never
personally interact with like
antarctica or mars
so now you have a basic idea
of why so many autistic adults are
undiagnosed
but you may be thinking what can i do
about it
the vast majority of you are probably
not medical professionals
let alone ones involved in referring or
diagnosing
autistic people so a lot of this
information can be applied to
your life right
nope actually a lot of what i said today
can be condensed into
one sentence and this applies to
autistic people as
a whole are you ready
re-conceptualize how you think about
autism
and autistic people i’m gonna say
it again just to let it squish into your
brains better reconceptualize
how you think about autism and autistic
people
consider the kinds of assumptions you
may need to stop
making since there’s likely to be a lot
of those
i’d like you to focus on one right now
in your head
and think about how you can work and not
making that single assumption
maybe it’s that we all fit the
stereotypes or that most of us get
diagnosed
heck maybe it’s that people of color
can’t be autistic
sit on that for a little bit
now consider how many people you’ve
interacted with family and friends
classmates
and colleagues service staff and clients
as of 2018 1 in 66 children in canada
are identified as autistic
think of how many autistic children and
adults this number
doesn’t include think
of how many autistic people especially
black autistic people
are being called aggressive and
disruptive because
no one knows that they communicate
differently including
themselves think
of how many of us are misunderstood and
are implicitly taught
there is something fundamentally wrong
with us
instead of learning that we are
inherently different but never
ever less thank you for coming to my ted
talk
you