- Welcome back to Aspergers From the Inside.
In this months Patron's Choice Video,
we're talking about high-functioning autism,
and I'm gonna be sharing four things that show
that high-functioning autism is not what people
commonly think it is.
Firstly, the term high-functioning autism
was originally used as a diagnosis label
to refer to a person with an IQ of above 70, which means
that everybody with average to above average IQ
who is not diagnosed with an intellectual disability
as well as autism is termed high-functioning autism.
And the reason that they did that is because
somebody assumed that if you have average
to above average IQ, you would be able to function.
You would cope well in society.
You would be able to do well, and what we found
is that that is just not correlated in the way
that they originally thought it was.
In fact, there was a research paper put out
earlier this year from
the University of Western Australia
called The Misnomer of High-Functioning Autism,
basically calling for that term to be consigned to history.
So, number one, the term high-functioning autism
has nothing to do with functioning.
It was originally coined to refer to someone
with average to above average IQ.
Okay, so number two is that a person's level of functioning
is dependent on the situation.
So, I cannot have a label as I am either high-functioning
or low-functioning.
I have high-functioning days and low-functioning days,
for example, and a lot of my friends
use this terminology.
It's quite easy to imagine what a low-functioning day
looks like; it's the kind of day where you can't
get out of bed.
You can't think straight.
The things that you would normally be able to do,
you can't do on that particular day.
And this is relatively easy for the neuro-typical
population to understand as well.
I'll bet you've had some low-functioning days.
Have you ever been sick in bed with the flu or something?
How functioning were you on those days?
Did you go to work?
Did you perform any complex, theoretical,
intellectual, you know, cognitive tasks?
All of those things were really difficult
because you were sick in bed with the flu.
And a lot of people feel this every morning
before they've had a coffee, all right.
You get up in the morning, and just, things just
aren't working quite right yet, right?
I have friends that tell me, you know,
you're talking too quickly.
I can't process this.
I haven't had my coffee yet.
Can you just leave me alone until I've had time
to wake up and have my coffee?
So, this is what it means to be low-functioning,
because I can't do the things that I could normally do
in that particular time.
And that could be due to burnout.
It could be due to stress.
It could be a relatively permanent thing
of there is a particular task or a particular thing
that I am just not capable of doing
very well for a variety of different reasons, right?
All of these are completely personal things,
but the point of number two is a person
cannot be high-functioning or low-functioning.
A person can either be good at performing
a particular task at a particular time,
or there might be barriers, which means
that at this particular time, whatever I'm trying to do
is very difficult.
Okay, so number three.
What does high-functioning literally mean?
What it literally means is I am functioning
well at the moment, and my struggles are invisible.
So, high-functioning literally means invisible struggle.
What it does not mean is reduced level of difficulty,
reduced level of challenges, right.
People talk about mild autism.
And when you think about it in those terms,
it sounds as though high-functioning means
your challenges are less.
Now that's sometimes true, but what it really means
is whatever struggles I'm going through,
you can't see them, right.
It's like a duck paddling under water,
doing really, putting in a huge amount of effort
behind the scenes to appear to be doing really well.
And we often do do really well.
The key here is the amount of effort that it takes
to do really, really well.
And because of that increased amount of effort,
we are often at our limit all the time.
Now, this bit, is see-able from the outside.
Maybe you know someone on the spectrum,
or a child on the spectrum, and they seem to be able to go
off the edge really quickly, and sometimes,
a really small thing can set them off,
and they get really upset.
Or they're going really well and they suddenly crash,
and suddenly can't do anything anymore.
Why do you think that is?
It's because all of this time,
we've been pushing ourselves to our absolute limit,
behind the scenes where you can't see it.
Then, a little bit extra is the straw
that breaks the camel's back, right.
So, high-functioning autism means working really, really,
really hard behind the scenes.
Maybe that's due to social anxiety.
Maybe that's due to cognitive challenges
that I'm trying to overcome in the background.
Another example here is think about what it means
to have high-functioning depression.
Or high-functioning anxiety.
It doesn't mean mild anxiety or mild depression.
What it means is clinical depression,
clinical anxiety, in a person who is managing,
for the moment, to keep their life together,
and things haven't completely fallen apart yet.
Now, the longer you leave high-functioning depression
and high-functioning anxiety, the greater the chance
that absolutely everything's gonna come tumbling down.
But at the moment, I'm high-functioning
because despite all of these challenges
that are invisible and you can't see in the background,
I am successfully living my life
and getting all the things done that I need to to, you know,
maintain relationships, keep a job, all of those things.
So, from the outside, it looks like I'm doing really well,
where actually, I'm actually at the very brink
of completely falling apart, all the time.
And that makes it difficult to get help,
because it doesn't look like I need help.
It looks like I'm doing really, really, really well,
until I fall off the edge and crash, and meltdown,
and all of a sudden I don't have relationships,
and I don't have a job, and I don't have
any of these other things.
And it's a surprise to people around me,
because, oh, but I thought you were doing
really well; what happened?
Actually, nothing happened.
It was the stress was always there.
It was just invisible to someone on the outside,
because I was so high-function.
Okay, so number four, if I had to give a stereotype
of the kind of person who has high-functioning autism,
it is not someone like Sheldon Cooper
from the Big Bang Theory.
Not by a long shot.
The stereotype of the people that come to mind
when I think of high-functioning autism, right?
And this is a stereotype.
Obviously there's lots of different types,
but this is the one that comes to mind for me.
It's a 55-year-old man who has been chronically
unemployed for the last 20 years.
He's really intelligent.
He's grumpy, he's cynical, he did really well
in high school and university, and got a great job,
and everything was going fine,
until he's sort of mid-20s, or 30s, when he had his first
major relationship break down.
That went away.
All of a sudden, I don't have a job.
All of a sudden, I'm not coping at work.
Sorry, I don't have a relationship.
All of a sudden I'm not coping at work and I lose my job.
And now, you've got sort of a middle-aged person
who doesn't have the social skills to make new friends,
'cause they don't have the same interests
as everyone else.
They don't have the relationship skills
to start dating again and find someone else,
'cause they haven't had to for the last 20 years.
They don't have a job and they don't interview well,
because they're really abrupt, and they were relying
on the fact that people already knew them.
And you can imagine what this kind of external input
does to someone, right.
In terms of cynicism and anxiety and other kind
of mental health things.
When you meet this person, they will come across
as grumpy and rude and arrogant.
And in the back of your mind, you're probably likely
to think something like, oh, well it's no wonder
you don't have a job if you treat people like that
and you speak to people like that.
That is high-functioning autism.
That is someone who's really intelligent,
and was functioning really well for a while,
until they fell off the rails,
and now, what are we doing to help those kind of people?
They need help, just as much as the children
who are struggling in school,
or those who have an intellectual disability,
or something that is more obvious
that we don't mistake for a completely competent
person that's just rude and arrogant and cynical.
So, that is an example of what high-functioning
autism actually looks like in real life.
And I bet that is probably a surprise to most people
who have this fanciful image of successful
Sheldon Cooper-like characters who might be
a little bit quirky, but are still getting along fine
in the world, and have nothing really to worry about.
Okay, well there were my four things.
If I have to give a summary take away message,
it would be that high-functioning autism means
invisible struggle, and the biggest challenge
is that other people don't understand.
Because how can you understand what you don't see?
It means that we have to look past the person's
ability to appear to be okay,
and see that internal struggle.
So, I don't want your pity.
I don't want your sympathy.
All I want is empathy and compassion
and to be treated kindly, and for my very real
struggles and challenges that cost me a lot of energy
behind the scenes, just, they are real,
and they are valid, and when people understand that,
the whole world is a much more friendly
and relaxing place.
Okay, so I'm hope you've enjoyed this video.
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Thanks for watching and I'll see you another time, bye.