Why Being Labeled ‘High-Functioning’ Hurts Me as a Person With Autism – The Mighty

Every morning I read new stories on The Mighty. I like to start my day out with my peers, a group that I do not often find in “the real world”. Other invisible Autistics, like Karen Harper, contributor to The  Mighty.

This morning’s post talks about a difficulty that many Autistic people and people with Asperger’s face.

Functioning labels cause problems for everyone.

“Low functioning” Autistics may be extremely intelligent but have difficulty verbalizing their needs. People often underestimate this group.The word “low” seems to suggest something lesser. Nobody should be told that they are broken. People should not be made to feel devalued.

Carly Fleischmann is an amazing example of a woman who everyone under estimated. She learned to type and was finally able to communicate with the world. She explains in VERY clear detail what it is like to be a non-verbal Autistic. Carly is extremely intelligent, brilliant, and funny. She even interviewed Chaining Tatum on YouTube. It was a huge success.

In her book, Carly’s Voice: Breaking Through Autism, Carly talks about the frustration she had when people thought she was not smart.

“High functioning” Autistics have a different problem. People often dismiss them as being too smart to need help. When we fowl up social engagements people often chastise us for our lack of abilities, telling us we are not trying hard enough. They don’t understand that we really are doing our best – with GREAT effort and energy.

It hurts to be told over and over again that your best is not good enough.

I relate very strongly to what Karen has to say because I have often been told very similar things.

Autism is an invisible disability. Some behaviors I have may give clues but unless you watch closely and know Autism well, most people have no idea.

Nobody ever wants to hear about the bad days. You can’t talk about all the things that bother you throughout the day or people will say you complain too much.

People don’t believe you when you DO explain yourself either. They accuse you of being weird, negative, making excuses, or being lazy.

Eventually you learn to keep things to yourself. Suffering silently, not wanting to make waves.

Passing – you become an expert at pretending to be normal, but this activity is costly to your health and self esteem. It drains your energy and makes you want to hide from the world.

If you are good at passing you are labeled “high functioning” because you can hide all of your suffering. You are able to make “normal people” feel comfortable by appearing “less Autistic”.

Congratulations – you are a huge fake – YOU are “high functioning”!

Does anybody else feel like this is the wrong expectation for the world to have?

I don’t want to fake it any more. I just want to be me, out in the world, fabulous, and breaking stigmas.

“Normal people” gave us these high and low functioning labels. They explain how we fall on their scale of “normal”. We need to speak up against these labels that do more harm than good.

Some day I dream to live in a world with true understanding and Autism acceptance. Unless we all start to write, start to speak for ourselves, I fear this will never happen.

People naturally push off what they do not understand – it is our job to help “normal people” understand us.

I can take NO credit for Karen’s words below. Please read the full article by Karen Harper on The Mighty here.

Yes, I am “high-functioning” enough to call agencies and my insurance company. Yes, I can hold down a job and a relationship. That doesn’t mean I don’t need help with certain things.

I don’t wear my “high-functioning” label as a badge of honor or take it as a compliment. Being “high-functioning” means I’ve learned to cope with my challenges on my own when help should have been available. Being a “high-functioning” autistic person has contributed to my “high-functioning” depression because I can  easily pass as “normal” in society. My challenges are, for the most part, hidden.

And ironically, being able to “pass” is just what society wants us to do.

Please read the full article by Karen Harper on The Mighty here.

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29 thoughts on “Why Being Labeled ‘High-Functioning’ Hurts Me as a Person With Autism – The Mighty”

  1. Thanks for writing this blog – it reminds me that like being autistic, having anxiety is also invisible – people just assume that you are ok, whatever ok is? Inside though a volcanic eruption is happening, and from the outside you just look like your coping…….if only they knew?

    Liked by 3 people

    1. hi I guess my HFA isn’t like your as mist can tell I have a disabilty I don’t work .still live at home an will allways need some help .i didn’t become HF till an adult so for me I think an my family thinks it great as I wasn’t when younger .but compared to my friends with aspbgers I’m not HF .so I guess it depends were you are I been geting help since a small child still do .but I think even if your mild there is help

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      1. That is why it is important that EVERYONE share their own unique experiences. We are alll different. I have literally made myself physically ill passing before. It is not living but those are my struggles. There are also communication struggles and isolation. . . Some things that most of us agree on. We all need to speak up and remind the world that we are individuals.

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  2. I’m glad I read this. Often times, I think so many “normal” (What is normal, anyways?) take the challenges people face for granted. It’s important to focus on people’s strengths, because those are the qualities that tend to be unique in all of us.

    Liked by 2 people

  3. Thank you. Very much appreciate your insights. The people I have told about recently discovering my autism invariably say, “Well, you’d never know it.”, as though slipping under the radar is a great accomplishment when really it means I spent 38 years beating myself up inside because I couldn’t figure out why I was so different.

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  4. Did you happen to catch any interviews about Ben Affleck’s new movie The Accountant? I watched one today that I felt uncomfortable with. He said his character was on the Autism Spectrum then mentioned Aspergers. He mentioned studying material on the subject and spending time with a group of “high functioning” comedians. During the entire interview his speech was fast, he looked sweaty, nervous, or hyper, no one had time to even ask him questions he was talking so much. I always have a hard time when actors portray a disorder or illness that is so misunderstood to begin with that Scientists can’t even agree on any one standard.

    Liked by 2 people

  5. I feel like i have to use the “high-functioning” label people have made in order for me to be able to say I am Autistic. I hate it. Each time i tell someone, i say along the lines of “you’d never see it if i didn’t say anything” “I’m Autistic, high-functioning” etc. I don’t like the idea of “passing” but I am forced to do it just to get anywhere. I’m tired of “faking it till i make it.” It hurts me to call myself “high functioning”. Perfect slap to the face. But i do it so people know that high functioning people with Autism exist.

    Liked by 1 person

  6. Thank you, as always, for bringing something to my attention that I wasn’t aware of as a problem. My son is referred to as ” high functioning.” I never saw it as a negativity until you gave your perspective.

    We try not to use labels around him and have only just recently started to explain Aspergers to him and how it affects his life so that he has more understanding of some of his own behaviors etc… He wants to know why he thinks the way he does and does some of the things that he does. He wants to know why he seems so different than other kids. In middle school, no one wants to seem different or to stand out. (Speaking from my experience and from what he has shared with me, I know some of you will have had different experiences.)

    Can I suggest an article? How do I explain to a tween Aspergers? What is the right time for a parent to start sharing diagnoses? Well, I guess no time is right, but when is appropriate? I know you aren’t a doctor, but your perspective really brings a lot to my interactions with my son.

    Labels in general can bring pressure, but I understand how some people feel the need to organize and group things to try and bring understanding for themselves. It is to help them, and in all probability, it is of little positive use to someone with those characteristics?

    Lots of food for thought in the post!

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    1. I wish I had all the answers. You think knowledge can be empowering but it needs to come from a positive place. Always focus more on your son’s accomplishments than hus shortcomings. When he feels inferior remind him that he is different, unique, but not LESS. Remind him of the things that he can do that his peers can’t. Don’t ever let him think that there is something wrong with him for being who he is. Build him up because the world is going to bring him down over and over again. Being AS is difficult, especially during adolescence. Remember that I can not give medical or psychological advice – just sharing from my own experiences.

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  7. Thank you for pointing out all the struggles people on the high functioning end of the autism spectrum face. I have been accused several times of using autism as an excuse. I also hate the way some people try to pit people who are labeled high functioning against people who are labeled low functioning in a “Who has it worse?” battle. I hate the way some people act as though the only people who truly have autism are those people labeled low functioning, as though high functioning autism is “autism lite”, a though it’s just a “slight difference” rather than a real disability. No, people who are labeled high functioning have a very real disability and their struggles are very real. Yes, people labeled as low functioning struggle in certain ways that people labeled as high functioning do not and they face certain hardships that people labeled as high function do not but the converse is also true. I’d prefer to see people affected by the high function autism label and people affected by the low functioning autism label work to support each other rather than trying to compete against each other in the suffering Olympics.

    Liked by 1 person

  8. This is excellent, and something I’ve been struggling to express for years. Some of us work very hard to communicate, and being blown off with high functioning or not being believed we’re even challenged because we manage to pass in someone’s eyes is gauche and shallow of popular opinion. I am so grateful more are coming out helping me express this, and I could care less who functions better doing it because the whole point is to stop grading people into ‘doesn’t measure up’ categories in the first place. ❤

    Liked by 1 person

  9. I love your blog. I too have yet to come out of a closet. Mine’s of Bipolar. And I agree, who’re normal people to label us as high functioning and low functioning?
    And Karen’s words were beautiful. Thank you for writing this post. It’s helped me some.

    Liked by 1 person

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