Hi everyone, I'm Amythest and welcome to Ask an Autistic!
I am not a fan of functioning labels and I will explain why in this video.
There are
two main reasons that I do not like them, and I think that they actually are used against
autistic people, rather than to help us.
Also, I just want to say that if you hear any background
noise I'm sorry about that, we got a new kitten and so she might be getting into all kinds
of mischief.
I will introduce her to all of you at the end of this episode.
Functioning labels are labels that people, usually non-autistic people in positions of
authority over autistic people, place on people with autism to describe their abilities.
So for example, high functioning and low functioning.
Functioning aren't terrible in themselves
– I mean, they're just words.
The problem is that functioning labels really aren't accurate,
they aren't an accurate description of an autistic person's abilities.
The truth is
much more complex than simply high functioning or low functioning.
Sadly, functioning labels
are often used by non-autistic people to oppress and to silence autistic people.
I've heard
the term low functioning used to discredit the voices of non-verbal autistic people.
As if communication through AAC or pointing to a letterboard or text-to-speech isn't as
valid as speaking with your mouthparts, which I think is ridiculous.
And on the other hand,
high functioning is used to discredit autistic people too.
I am sure many of you have heard
this one before – 'well, you're not like my child, you're high functioning, my child
will never be like you'.
When functioning labels are used in this way, they are in use
to silence autistic people.
Often because what the autistic person is saying doesn't
match up with non autistic people's view of autism and disability and what a 'good autistic'
looks like.
Often that is silent and not meddling in the affairs of neurotypical people who
know so much better for them than they do.
Along with being used to discredit the voices
and experiences of autistic people – either you're too low functioning to understand or
know what you want from your life, or you're too high functioning to have a say in this
discussion because you know, 'you're not like my child'.
Functioning labels hurt autistic
people because they're just inaccurate.
To explain the ways that functioning labels are inaccurate
I'm gonna have to go to the autism spectrum for a moment.
When people
know very little about autism they usually have it in their minds that you are autistic
or you're not.
They might have an image of Rain Man or that kid from the TV show Touch
in their heads.
And then when they hear that autism is a spectrum, they start to think
of it kind of as a dial, we have low functioning and then high functioning.
Or maybe you know,
points on a line.
You know, very severely autistic to mildly autistic.
Really the spectrum
of autism is so much more than that.
To be autistic is to have differences and disabilities
in many areas of your life and development and the way that you communicate and express
yourself.
And so when you think of autism as a spectrum you have to think about it as
a spectrum within each autistic person as well.
And to add to our considerations of
the autism spectrum, each autistic person along with their individual strengths, disabilities,
deficits and differences will also experience fluctuations in their ability to function
in day to day life.
Neurotypical people have days when they can handle more things and
days that they can handle less.
Days when their energy is lower or they might need some
time alone.
With autistic people it's the same, our brains are not static.
Our abilities
and limitations are going to fluctuate and change day to day, week to week, in different
situations and different environments.
So an autistic person who can speak in the comfort
of their own home in front of a camera with a carefully worded script and notes in front
of them, may not be able to speak so eloquently to a stranger or to an acquaintance.
And they
may not be able to speak at all in a situation where there's a lot of sensory input or many
people present.
Autism is a spectrum, not just for each autistic person and each of
their abilities and differences and deficits, but also within each autistic person.
So you
really cannot categorize an autistic person as low functioning or high functioning.
At
least not if you want to do justice to each individual autistic person's life and experiences.
Autistic people are people, we're gonna have bad days and bad weeks.
We may go through
autistic burnout or we may have good weeks or years with the right support and accommodation
an autistic person can live on their own, they can drive, they can go to school.
I find that it's especially harmful to put functioning labels on autistic children.
Autistic
children develop differently.
That means that their development is going to look different
than a non-autistic child.
They may hit their milestones late, or never.
Some autistic people
will never speak with their mouthparts.
But they may be able to learn to read and they
communicate through methods like AAC, text-to-speech and sign language.
There are autistic people
who didn't start speaking until they were 4, or 7 or 10 years old.
Autistic children
have just as much capacity for growth and change and learning as non-autistic people
do.
It's just that the learning has to happen in a different way and the development is
going to look different.
So to label an autistic child low functioning is severely limiting
what society expects them to be able to do.
Really their strengths and their potential
is erased.
And when an autistic person is labeled high functioning, they're going to
have trouble getting the accommodation that they need.
And really, the two standards that
people tend to go by when they're deciding if you're low functioning or high functioning
are verbal speech and self care skills.
And like I said, using myself as the example,
in front of a camera and with a script that I've prepared all week, yes I can speak with
my mouthparts and I can speak eloquently and get my point across.
But in a social situation
with people I don't know, or at the mall or when I'm close to meltdown I can't speak,
I go non-verbal.
When I was in high school and before I entered burnout I didn't have
a lot of trouble getting myself dressed and brushing my teeth and showering every day.
But after going through burnout, these things are genuinely hard for me.
I would not be
able to live on my own or at least not in a healthy way.
I would go without meals quite
a bit and I would forget to drink water or go to the bathroom or to clean myself.
Just
because somebody can write a blog post on the internet or make a YouTube video or go
to school doesn't mean that they're going to be able to do other things.
And in the
same way being able to speak isn't indicative of ability to do all the other things that
neurotypical people expect of you in our society.
And so labeling an autistic person high functioning
can actually impede them later on, say in post-secondary or in the workforce.
Because
when autistic people are labeled high functioning, their needs and the fact that they have a
disability is erased.
Whether it's high functioning or low functioning, functioning labels hurt
autistic people.
People ask me 'well then what am I supposed
to say instead?'
I say, how about we talk about the autistic person like they're an
individual and a person.
So instead of saying 'Sally is low functioning', you could take
a little bit more time and say 'Sally is autistic, she is non-verbal and uses an iPad to communicate.
She needs help with daily self care skills, but with an aide accompanying her she can
do her own grocery shopping, run her own errands and cook her own meals.'
And instead of saying
'John has high functioning autism', you could say 'John is autistic, he communicates verbally.
His strengths are in his organization, his attention to detail and in the intensity of
his special interest.
He requires accommodation in school when it comes to handwritten assignments
and he requires a quiet, safe place where he can recharge inbetween classes.'
So while
it's not as simple or quick as slapping a label on somebody, there are ways that you
can express what an autistic person's strengths and disabilities are.
And I think that when
we move away from functioning labels – which aren't just inaccurate, they're actually used
against the autistic community – and towards a more holistic approach of treating autistic
people as individuals whose own 'functioning levels' may fluctuate day to day, month to
month or year to year, we can foster more understanding and a more accurate picture
of what each autistic person's life and experiences look like.
So those are the reasons that I, and many other autistic people, don't like functioning
labels.
I'll include some links to writings on the topic of functioning labels by autistic
people in the video description.
So if you feel like checking that out, please do.
And
as I said I would I will now introduce you to Gigi!
She is 8 weeks old, we just got her,
she is very sweet and she's kind of sleepy right now because she was playing and running
around the whole video so sorry for any background noise she might have made.
So here's her little
face.
Aww.
I just love her and we like her very much and we're very happy to add her
to our family and I hope that her and Kitty can be best friends for a very long time.
If you have any questions that you would like answered via video feel free to post your
questions in the comment section below or message them to me.
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Thank
you for watching.