“But he’s so high functioning!”
“No one talks about low functioning autism!”
“My child is Autistic, but he’s only level 1”
If you are connected to the autism community in any way, shape, or form, it won’t be long until you hear about functioning labels.
These are an attempt to categorize Autistics from “a little Autistic” to “really Autistic”, and there are about a million reasons that doesn’t work.
The fact is, autism functioning labels are inaccurate and harmful.
But they’re pervasive in our community because doctors, therapists, teachers, and parents continue to look for this categorization.
So today I want to unpack what functioning labels are, and why they are so harmful to the Autistic community.
Autism Functioning Labels are Inaccurate and Harmful
Now, if you’re a parent reading this that currently uses functioning labels, I want to be clear.
I understand why you use your child’s functioning label.
For many of you, it was a part of your child’s diagnosis. It is the way the experts refer to your child’s autism. It’s a fact, right?
The thing is, doctors and therapists are not the true experts on autism, Autistics are.
So while it may take some getting used to, and while it may feel uncomfortable, I want you to keep an open mind and hear us when we say something is harmful.
Because when you know better, you can do better.
Now before I dive into why autism functioning labels are inaccurate and harmful, I want to get really clear about what autism functioning labels actually are.
What are Autism Functioning Labels?
Autism functioning labels are, at their core, a way to define how well an Autistic person “functions” in society and how much support they need while they do it.
They’ve taken a few different forms over time, but the most common are “high or low functioning”, and “level 1, 2, or 3”.
High functioning refers to Autistics who, in theory, function well in society and have minor struggles.
Low functioning refers to Autistics who, in theory, struggle to function well in society and have major struggles.
In reality, these functioning labels are based nearly entirely in IQ and ability to communicate verbally while ignoring things like sensory, emotional regulation, anxiety levels, masking, burnout, or meltdowns.
The updated version of high and low functioning are the new Autism Levels where Autistics are labeled either Level 1, Level 2, or Level 3 based on the “level of support” they require in order to function in society.
These levels are based in an Autistic person’s ability to “communicate, adapt to new situations, expand beyond restricted interests, and manage daily life”.
Essentially, they are based in an Autistic person’s ability to act neurotypical… But we’ll get into that more later.
Why Are Autism Functioning Labels Inaccurate and Harmful?
Now that we’re clear on what autism functioning labels are, let’s talk about why they are inaccurate and actually harmful to the Autistic community.
#1 Functioning Labels are Based in Ableist Ideals
Functioning labels seek to define how well Autistics function in society which is entirely based in ableist views of what it means to function and be successful.
An Autistic who communicates verbally is seen as higher functioning than an Autistic who communicates with an AAC device.
An Autistic who masks in public is considered higher functioning than an Autistic who openly stims and fixates on their interests.
Autistics should not be labeled by our ability to function up to neurotypical standards in a world that wasn’t created for us.
#2 Ability to Function is Always Fluctuating
Are you able to read?
If you’re this far into my obnoxiously wordy blog post, my assumption is yes.
- Are you able to read when you have a wicked migraine?
- Are you able to read when you’re so exhausted your eyes are drooping?
- Are you able to read a massive wall of text when you’re distracted?
My assumption is that for one or more of these scenarios, the answer is no.
That’s because your ability to function or complete tasks varies from day to day and situation to situation.
That is true of all humans, neurodivergent and neurotypical.
We wouldn’t define neurotypical or able-bodied people by their ability to function at one specific time, so we shouldn’t do that for Autistic or disabled people either.
#3 Functioning Labels Let People Refuse to Accommodate
In theory, functioning labels are supposed to give insight that allows us to receive the support and accommodations that are most relevant to us.
The sad truth, however, is that autism functioning labels are used as an excuse to refuse accommodations to Autistic people.
If you are considered high functioning, you shouldn’t need accommodations or support.
If you are considered low functioning, there’s no point in accommodating or supporting you because you won’t be able to function anyway.
It’s horribly ableist, but this is what happens when we rely on functioning labels to give us information.
Instead, each Autistic person should have their individual needs taken into account.
If they need an AAC device, give them a device. If they need tasks broken down smaller, do it.
Instead of relying on inaccurate and harmful functioning labels, specify your unique child’s needs and accommodations.
Your child, and all Autistics, will be better off for it.
If you loved this post, you should also read: