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“Is he high or low functioning?”

It happens almost every time without fail.

I’m talking to a mom at the park or a grocery store clerk. I mention that A-Man is autistic because it naturally fits the conversation, and immediately the question comes.

“High or low functioning?”

What an odd question to ask a stranger.

I understand the curiosity, but it feels like asking me what color undies my child is wearing.

Do you really need to know? Does the information help you? Not really.

But it’s still one of the most common questions that parents of autistic children face, so today I’m sharing 5 Major Problems with Using Autism Functioning Labels.

(Image description: Boy in red coat walking in tall brown grass. Teal and coral text reads: 5 Major Problems With Using Autism Functioning Labels at the bottom of the image. Teal and coral Autistic Mama logo in the top right corner.)

5 Major Problems with Using Autism Functioning Labels

For those who haven’t heard before about autism functioning labels, they are labels applied to autistic people that attempt to communicate how well the person can function in everyday society.

In theory, it would be helpful to have this information, but in practice, there are 5 major problems with autism functioning labels.

#1 Autism Functioning Labels Aren’t Accurate

In theory, autism functioning labels are supposed to give information on how an autistic person can function in society.

In reality, being able to function in society is a lot more complicated than a simple label can explain.

One person may be able to drive independently, which would lead you to believe that they are “high functioning”, but it doesn’t take into account that that same person cannot have a conversation without experiencing extreme anxiety and a meltdown.

The most common factor that determines whether an autistic person is considered high or low functioning is the ability to speak verbally.

So if I tell you that A-Man is high functioning, it really just means that he can speak.

It doesn’t begin to tell you that we had to get crash pads to keep between him and me when he’d have aggressive meltdowns during my pregnancies.

It doesn’t tell you that for years his only verbal communication was movie scripts.

Beyond the focus on verbal communication, the fact is that autistics function in different ways depending on the activity, their energy level, the day, and more.

#2 Autism Functioning Labels Aren’t Helpful

Knowing someone’s functioning label doesn’t help you to know anything specific about them, except for their ability to verbally speak.

So it really doesn’t help the mom at the park, the grocery store clerk, or the substitute teacher to really understand the autistic person that they’re trying to understand.

It’s much more helpful to talk about an autistic person’s individual strengths and struggles.

They will give you a lot more helpful information than an arbitrary label given by a specialist somewhere that’s maybe spent two hours with the autistic person total.

And again, knowing that I am considered high functioning doesn’t help when I’m in the middle of autistic burnout and struggling just to get out of bed in the morning.

#3 Autism Functioning Labels Further the Divide in the Autism Community

I have been repeatedly told that my voice as an autistic self-advocate doesn’t count because I’m “not autistic enough”.

Because I can verbally communicate and I’m considered high functioning, parents feel that my opinions couldn’t possibly apply to them.

This excuse is used by parents to ignore autistic self-advocates, and ultimately it just harms their autistic child.

On the flip side, sometimes parents who have children that are considered high functioning can have pretty ableist attitudes towards those who are considered low functioning.

The functioning labels can almost come with an attitude of, “well they’re not THAT kind of autistic” and they’re really just furthering the divide in the autism community.

The fact is that all of us are autistic. We all experience life differently. We all have different struggles and strengths.

#4 Autism Functioning Labels Can be Ableist

When the mom at the park asks me if my son is high or low functioning, if I answered high functioning her response would likely be something like “oh that’s wonderful”.

Because people see high functioning labels to mean that someone is just a little disabled.

And the common societal belief is that being a little disabled is much better than being severely disabled.

It’s really frustrating to see the common ableist views that society has all the time.

It doesn’t mean that these people are evil. Our society is literally raised to believe that disabilities are bad.

It just becomes exhausting to hear people celebrate autistic people being able to pass for neurotypical.

But acting neurotypical shouldn’t be the goal for autistics, and I believe that society should accept us as we are.

#5 Autism Functioning Labels Get True Needs Ignored

When you are considered high functioning, people who don’t understand autism can tend to believe that you don’t need accommodations.

I mean, that label means you can function well, right?

Well, not exactly. Autistic people all have their own struggles, and we all need different accommodations and help.

Those very real needs shouldn’t be ignored because someone can verbally communicate.

On the flip side, people who are considered low functioning are often not given opportunities that others are given.

People hear their label and almost give up on them before they’ve even been given a shot.

PS: Want to join an autism group where we embrace autism and reject functioning labels? Enter your info below!

Overall, autism functioning labels don’t really help anyone, and they can be downright harmful to autistic people.

It’s my hope that one day these labels won’t even exist.

For now, I will share this post. I will answer the mom at the park by saying, “we don’t feel like functioning labels are accurate or helpful”.

I’ll keep fighting for the rights of those considered low functioning to have opportunities and the rights of those considered high functioning to have accommodations.

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