- Understanding autism is not a straightforward task.
I mean, what is autism?
Why do we call it Autism Spectrum Disorder, right?
I mean, Asperger's, autism, A.S.D.
What do these actually look like in real life
for a real person?
In today's Patreon's Choice video,
I'll be sharing with you the human side of autism.
We'll go through the abstract
and clinical medical definition,
and contrast this with what it actually looks like
in real life for a real person.
I'll be decoding the diagnosis criteria from the DSM-5,
the philosophy that underpins it, and exploring
some of the very unhelpful ideas
that this can unintentionally propagate.
Finally, we'll take a look at where the future lies,
a powerful new way of thinking that healthcare professionals
all over the world are fast adopting.
So for those of you who are new,
my name is Paul and I discovered I was on the Spectrum
about five years ago at the age of 30.
I share my insights in to life on the Spectrum
via weekly videos on this vlog,
Asperger's From the Inside, and I've also got a new project
called autism Explained, helping parents
understand their autistic children.
The secret to understanding autism is empathy.
Autistic behavior is essentially human behavior,
so we need a model that builds a bridge to understand
the autistic experience.
Again, empathy is the key.
Using the medical model of disability,
autism is defined as a list of deficits
in adaptive behavior, but when we compare the medical
model versus the social model of disability,
the picture is very different.
This is the human side of autism.
What it actually means in real life for a real person.
When we look at autism from a human perspective,
from a position of empathy that assumes, first and foremost
that our similarities greatly outnumber our differences,
suddenly the pieces of the puzzle, all right.
Sometimes autism is represented
by this puzzle piece, all right?
Because it was a mystery for a very, very long time.
Suddenly, those puzzle pieces come together like magic.
Autism is no longer an unsolvable mystery.
It's a condition that we can all relate to to some degree.
No, we're not all a little bit autistic.
But practicing empathy opens the doors
to practical, compassionate, and effective solutions
to many of the challenges that are faced by autistic people.
Okay, so first, let me give you a little bit of background.
There are two major developments in recent times
that have led to a general move away from the medical model.
And those two concepts are the social model of disability,
and the phenomenon of neurodiversity.
And I'll come back to both of these later.
First, let's take a look
at the medical definition of autism.
If you type autism in to Google, you'll get something
like this: autism is a pervasive developmental disorder
characterized by difficulty in social interaction
and communication and by restricted or repetitive
patterns of thought and behavior.
Hmmm, what does that mean?
All right, does that give you a sense of a person?
Do you have an image coming up in your mind
of the kind of person we're talking about?
Of an autistic person?
What if I were to instead describe the human
side of autism?
An autistic person is one whose brain is wired
to think and act differently.
We are often very creative and passionate.
We love to do our own thing
and struggle to conform to social expectations.
The outside world is often hostile and confusing,
and so many of us prefer to, instead,
retreat and take comfort in what we know.
Especially familiar activities and routines.
The first definition we heard tried to define
autism from the outside.
The second one describes the experience
of being an autistic person.
It seeks to build bridges and create empathy
so that you can understand what it's like for us,
and this in itself helps immensely
to overcome the social isolation which is at the core
of the Autistic condition.
The internal experience of autism
is on of inherent isolation.
From my earliest memory, I felt as if
I was different somehow, and it's been incredibly difficult
to find my place in society.
We live in a world that isn't designed for us,
and we're expected to conform to social norms
that are at best, like unpleasant,
like trying to look someone in the eye, for example.
Or at worst, completely crippling.
Something like being forced to go through
mandatory job interviews when you really don't present
very well at job interviews.
Suddenly you're severely disadvantaged and unemployed
for your whole life.
That's a problem for a lot of people.
So, for me personally, discovering I was on the Spectrum
showed me that I'd been spending my whole life
trying to fit in, and not doing a particularly
good job, right?
When in reality, I was born to stand out.
What a massive burden lifted from my shoulders
that was, all right?
Realizing that I don't need to fit in,
I don't need to do what everyone else is doing.
I am autistic.
I was born to stand out.
No wonder I was having so much trouble
trying to be normal, right?
That's a quick insight in to my own personal experience.
And with that in mind, let's take a closer look
at the diagnostic criteria, according to the DSM-5.
DSM-5 being the diagnostic and statistical manual
of mental disorders, which is basically the rule book
from the American Psychiatric Association.
The criteria for autism is persistent deficits
in social communication and social interaction.
Deficits in social-emotional reciprocity,
in nonverbal communicative behaviors,
in developing, maintaining, and understanding relationships.
Coupled with that, there is restricted, repetitive
patterns of behavior, interests, or activities.
Stereotyped or repetitive movements.
Insistence on sameness, inflexible adherence to routines.
Highly restricted, fixated interests.
And extreme reactivity to sensory input.
This is a medical model of autism.
It seeks to identify a set of externally observable
behaviors that correspond to a clinical level of impairment
in various areas.
You'll note that the basic premise is that there's more
or less only one right way, right?
There's one normal way.
There's one healthy way.
And deviations from that order
is characterized as a disorder.
Disorders result in an impairment
of the individual, right?
As disability, which in turn, makes life difficult
for that person.
The natural consequence is that what we should be
trying to do is to fix or even cure the person,
and for a long time, success for an autistic child
was defined as a child who is indistinguishable
from their peers, right?
That's what the medical professions were trying to do
for a very, very long time,
until we learned better.
Things like lining up toy cars,
finding comforting routine,
preferring to play alone,
a heightened sensitivity to sound or light,
atypical hobbies or interests,
an aversion to looking people in the eye,
tendency to bounce, or spin, or stim,
or other things like that?
In this model, these are all deviations from the norm
that indicate that something is wrong, right?
A disorder that needs correcting.
In contrast, when viewed from the human side
of autism, these are all atypical presentations
of a perfectly normal human behavior.
We all like patterns and routine.
We all need our own space sometimes, right?
Some of us are introverts and we don't like
playing with other people all the time.
We all like different things.
We have different tastes.
In food and music, and hobbies, and everything.
When's the last time you were bopping your head
or tapping your foot to music, right?
Perhaps you like to eat spicy food
or go on a rollercoaster thrill ride
at an amusement part.
Those things are a statistically normal
way to seek a sensory experience.
For the only fact that other people do them too.
If you were the only one bopping your head to music
in the whole world, or if you were the only one
who liked to dance, or if you were the only one
who ate spicy food and everyone thought you were crazy?
Then, suddenly, you would be in the minority,
and your behavior would be considered abnormal.
This brings us to The Double Empathy Problem,
as described by Dr. Damian Milton in the U.K.
Neurotypical people are just as incapable
of understanding and relating to autistic behavior
as autistic people are of understanding and relating
to the neurotypical behavior.
So if something is normal for you,
it's hard to understand how someone else
does things differently.
And so similarly, for the autistic person,
if I think this is completely normal for me,
how am I supposed to understand you
if you do something completely different?
So now let's look at the two major breakthroughs
that offer us a fresh, new way of looking at autism.
And the first one is the social model of disability.
In the medical model of disability,
there was a person who had something wrong with them,
and there was something wrong with the person
that needed fixing.
The social model of disability acknowledges
that the environment, specifically the societal
environment, plays a significant role in enabling
or disabling a person.
And a very easy way to think about this
is like a fish out of water.
If you take a fish out of water,
it's not gonna do very well.
It was not designed to be in that environment.
To take a more human, social example,
imagine you wake up tomorrow morning
in the middle of China where no one speaks any English
whatsoever; all of a sudden you don't know the language,
you don't know the customs.
You're at an immediate disadvantage, right?
You didn't change, but the society around you did.
Add to this the concept of neurodiversity,
which Judy Singer published in her thesis in 1999.
Just like biological diversity, biodiversity,
there's a natural amount of healthy diversity
in any given population.
We're not all the same.
We're not all good at maths.
We're not all good at languages, or painting, or music.
There's a natural diversity, which helps us
to survive as a species.
So, when we realize that we're all different,
and that we're all supposed to be different,
suddenly it makes sense that if you've got a distribution,
some of us are gonna be way outside
what is considered normal.
So perhaps it's not surprising that a person
who does find that they're different
in some significant ways experiences problems
like isolation or difficulty relating to their peers.
So, with these two concepts of the social model
of disability and of neurodiversity,
we can now look at why more and more professionals
are leaning away from the medical model.
Now, firstly, don't get me wrong.
Medical model can be very useful for some things,
and it's useful to have a set
of externally verifiable criteria for diagnosis
and things like that.
But there are some very unhelpful ideas
that his model can propagate if we're not careful.
The first idea that's kind of inherent in this model
is that there's something wrong with the child or person.
And that it's something that needs fixing.
Something that needs to be corrected.
The second unhelpful idea is that autistic behavior
is strange and abnormal.
This creates a gap in empathy,
preventing parents from understanding their children, right?
We're actually all very similar,
but when you see a behavior through a lens
of that's abnormal, that's weird,
it's harder to relate, personally,
as to why someone might do that.
So as I mentioned before,
success used to be defined as a child
indistinguishable from their peers.
But these days, most people have left that behind,
and success is, now, more like a human being
thriving in their own way.
Does that sound slightly better?
We can teach skills rather than teaching conformity.
Because some of us were just born to stand out.
And when you try and fit a square peg
in a round hole, even when you succeed,
you destroy the peg in the process.
So in contrast to the medical models
that see statistical outliers as abnormalities,
the human side of autism sees statistical outliers
as just that.
Part of the normal distribution of humans and our diversity.
So, it means that, number one,
we're all human, we're all different,
and some of our differences are greater than others.
And a particular set of differences,
leading to the symptoms in the DSM-5, right,
as defined by the diagnostic criteria,
often result in a particular set of outcomes.
In this case, social isolation amongst other things.
So, it means that we have the ability
to help a person with autism cope in their daily life.
In other words, the environment,
especially the social environment,
makes a really big difference,
and we have the power to change that.
To change the environment to help a person to thrive,
rather than trying to fix the person.
And that's a huge difference.
In the social model of disability,
a person is not disabled as an adjective,
as a way of being.
It's not a part of their person or their personality.
Disabled is a verb.
A person is disabled by society.
So, for example, if I have trouble with my handwriting,
and I can only write really, really slowly,
I'm gonna be disabled in an exam situation.
Disadvantaged when I have to write an essay,
from my memory, on pen and paper,
in a limited amount of time.
This was actually the case for me.
I didn't have any special accommodations
in high school, and I was writing flat out
from the start to the end of my exam.
I ended up doing okay, but it was very, very difficult,
and I was extremely disadvantaged compared to other modes,
where if I'd been allowed to type,
if I'd been given more time,
if I'd been given the ability to do what I do now
when I write essays, right?
When I went back to uni and did some subjects
that required writing essays, I would write them
in a systematic structured, logical way
that didn't involve writing them with a pen and paper,
by hand, from start to finish.
In summary, the medical view sees abnormalities
as a disorder to be fixed,
but neurodiversity explains
why so many of us think differently.
Empathy is the key.
Understanding autistic behavior requires us
to go back to basics and understand human behavior.
No, we're not all a little bit autistic,
but we can all relate to some degree.
So, if you'd like to learn more
about how to use empathy to understand
autistic behavior, please visit autismexplained.com.au
or check out the Autism Explained YouTube channel.
Our mission is to empower parents
with the knowledge and tools to create supportive
environments for their kids.
And one-by-one, we will change the world
for the next generation of autistic children.
Finally, a big thank you to our Patreon family
for voting for this video topic.
Your support is invaluable and I really love
being able to share and workshop ideas with you
before they go public.
If you're new and you'd like to join our Patreon family,
you can have your say in next month's Patreon's choice video
and become a cup of coffee supporter of this channel
for as little as a dollar week.
So please consider that.
The world needs better information about autism,
and every little bit helps.
So I hope you enjoyed this video.
Please hit subscribe if you haven't already,
and I'll see you next week; bye.