“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.
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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I haven’t really had this functioning-label issue, and don’t even refer to my kids as autistic, but this is such a tough problem. My daughter wanted to know “who has autism?” after her father said 2 out of 3 kids did, so we talked about what difficulties they experience. She was so stuck on the label that she couldn’t see that her own ADHD/ODD is often more troubling. Same problem at school–the one with the label gets all the help, but the two who perform well academically (even one of the autistic ones) only get minor social & behavioral help. The “rules” don’t provide the support that would keep the behavior from becoming an issue, but the average-grade child gets all kinds of intervention. I never imagined it could be a handicap to be intelligent, but after experiencing it myself & with my kids, I start to see why some people are so desperate to keep their labels.
It’s interesting you point this out. I have both ADHD and ASD and something every teacher, parent, classroom aide and therapist needs to understand is that ADHD can and is FAR more disabling than autism for many people.
With autism, I have no friends. With ADHD, I have no job, no house and no money. Neither is great but you see what I’m saying. Survival needs become more pressing than social ones.
I have the answer to all this. 4 little words. Money. Time. Sex. and Death. If your autistic child can understand the concepts of Money…. Time…. Sex. …and Death.at an age appropriate level he is high functioning. If he doesnt, he is low functioning.And yeah labels are vital if for no other reason you wont get any help without them. I made a HUGE mistake when my son transitioned out of his school and I praised him and his accomplishments to the skies to my case workers at the DDD thinking they would give me lots of money since it was being put to good use…but it doesnt work that way. The higher functioning you are, the less money you receive. Alex received the minimum amount which meant the day care program he could afford was filled with relatively high functioning people{who were still mentally handicapped} But they could watch TV, go on the computers{which they all hogged} play board games,do puzzles, do arts and crafts, enjoy music games and so on…activites completely beyond my son, who, being a low functioning autistic would wind up under a table playing with his fingers. Plus there was no money allotted for transportation. I wound up driving him myself 45 minutes one way 4 times a day to get him to this program. Ill never forget talking with one case worker and complaining that I didnt seem to be able to communicate with people the fact that Alex needed a more structured {thus expensive}program and I was told….”Try crying on the phone. Just break down into tears…thats a good way to get more money”
Love this. When ever I talk about functioning to others I often state that she is high functioning although her developmental pediatrition states she is “moderate”. Everytime I leave her 6month appointments I feel defeated. Giving her that label is not empowering. I think she is SO REDICULOUSLY AMAZING, but to that woman she is… “eh ok” thats how I personally take her “moderate” functioning label.
My therapist labeled my daughter as being High Functioning because she has the smarts just not the social interaction. Plus she has the meltdown aggression with it. She finally quit biting at 7 years old.
I value life in all its forms and I wish everybody gets to spend the best possible life on this earth. Disabilities are might not be inherently bad. But they surely are challenging. An added challenge, that very few would deliberately choose for themselves or other people, if given the chance to choose.
Especially the debilitating, independence-hindering, life-threatening conditions, requiring an extraordinary amount of accommodations and life-long external support.
As an autistic person myself, I can’t agree more. High vs low functioning labels divide us into categories that don’t exist in the real world. I can speak, have a high IQ, work, and graduated college—but I’m in the bottom 1% for social/communication and daily living skills, have severe anxiety around change, and I can barely be around my family without headphones due to sensory issues. When people assume I’m high functioning, they assume I’m “basically normal with some quirks”—which is not true.
Same here, dude. Same here.
My state’s disability support program is basically “if you can put your own pants on and manage to have a shower and/or eat food sometimes, you’re too functional for help.
I wish people knew more about how much being hyperverbal sucks. I don’t say anything useful, it’s offputting and threatening to everyone I meet and it doesn’t help with social skills, employment or interpersonal relationships. So, great, I guess?
As an autistic person with learning disabilities and ADHD who went to college shortly after high school and then got a professional degree later and who was well respected in most of the jobs I held, I would be considered “high functioning”. However, my career “success” doesn’t define my success in life and in no way describes how much assistance I could have used to navigate work and life better.
Navigating work was difficult and finding work that I could face day in and day out given attention deficit issues was a major challenge – something that I faced on my owned and that resulted in autistic burnout. I lost a couple of jobs because of my autism and my inability to respond as expected and fit in. Because I was bright, if I missed indirect cues around me or the meaning of communication, negative intent was often impugned (e.g., narcissism, distant, judgmental, etc.) That caused problems at work and socially.
It was one thing not to fit at work most of the time and quite another not to fit socially or worse, have people assassinate my character in my community because they decided my not understanding them meant I was up to no good.
I’ve often joked that I need a social translator. I have relatives who, when they’re with me, are able to do just that. Just as I am able to help them understand logical fallacies. I have my strengths, but understanding indirect communication (that so many neurotypicals presume is direct) is not one of them. And it’s not like I will ever understand it. That would be like expecting a person without a leg to grow a new leg.
The fact that I appear neurotypical but a bit weird hasn’t been a help at work or in my social life (e.g., failed relationships where partners assumed things about me that had nothing to do with who I am or how I felt about them or who thought my attempts to clarify communication was game playing). Appearing neurotypical ought not be the goal nor should abandoning people based on the “high functioning” label. The goal should be to help autistic people learn to navigate a world that’s not meant for them based on how they are uniquely wired, and how, perhaps, to navigate the inevitable problems they’ll face because of the behavior of others.