Why We Must Strike the Terms “High Functioning” and “Low Functioning” from Our Vocabulary 

The neurodiversity movement is hurting those of us who genuinely are debilitated due to our autism. Do you even care about that? Not to mention that those of us who are debilitated by our autism need to be able to use the descriptor “low-functioning” so that we can get the supports we need. Without that descriptor, there’s no reason for anyone to think we need any help or support at all. Again, do you care about that? It seems to me like all you care about are autistic people who aren’t debilitated and who can function independently. Well, from an autistic woman who struggles daily with social anxiety, depression, hypochondria, and general anxiety disorder (and yes, all of those conditions were professionally diagnosed), and who can barely work as a result of all of those conditions, I’m not going to stand for that.

The world runs on money. The descriptive term {“high” and “low” functioning} is not going to go away because the term is necessary to define how much money needs to be spent.

You’re making excellent points. Thank you for this thoughtful article.

You make some good points. The word function does seem to imply the ability to work, produce, pay taxes, etc. Perhaps, it would be better to think in terms of levels of distress or suffering.

The problem with this would be that it is extremely difficult to measure how much another person is suffering. How do you tell if someone is exaggerating or malingering? How can you tell if they are suffering greatly but not sharing their feelings because they are afraid of being sent back to the psych ward?

It is much easier to measure functionality. Observers can tell if someone is eating, going out, socializing, or working. These actions can be observed by family or professionals.

When my son first became ill the only thing he did was lay in bed and cry. We didn’t want to continually ask him how he is feeling, so the only way we can measure his recovery is by observing his functioning.

I agree with you that society should change and make room for diversity but we cannot change the world for our son or anyone else. We can only hope that some day he will learn to accept the things he cannot change and find some happiness in this imperfect world.

Btw, “high functioning” can also be used as an insult: “high functioning schizophrenic” , “high functioning alcoholic”.

I agree that these terms are commonly used pejoratively. “Low functioning” is a PC way of saying “dumb” or “incompetent” or “frustratingly inconvenient.” “High functioning” often means “faking” or “doesn’t really need help” or “low priority.” While I understand the first poster’s concern that these terms are embedded in the system and are required in order to get help, this should not be the case. It speaks to the larger issue of the US social welfare system, where people constantly have to “prove” that they are “really needy” before any help is offered. I much prefer the European system, where people seek out the help they feel they need without having to prove “low functioning” to merit assistance. That approach also allows people to continue to receive support as their “functioning” improves, rather than punishing folks who get better with loss of medical care or housing or financial support because they are now too ‘high functioning’ to deserve it.

—- Steve

I agree with your perspective, Leah, I believe it would be a much better world if we all learned to treat others as we would like to be treated and the medical community got out of the business of judging the worth of other human beings, based upon their production and consumption within society at a particular point in time. Since those factors have nothing to do with one’s physical health.

I was medically declared to be “w/o work, content, and talent” and “irrelevant to reality” – which I would take as meaning “low functioning” – during a time I was a home owner, tax payer, stay at home mother of two small children, active volunteer head of an organization with 250+ volunteers, plus many other volunteer positions, and built up an art portfolio of about 60 paintings, not to mention wrote about 10,000 pages of notes / ideas for a future book. My doctor’s medical record show proof he drugged me up based upon lies from the people who abused my child, and he didn’t “believe” anything I personally told him. Another medical record claimed I was “unemployed.”

I had no idea the psychiatric industry was in the business of defaming people with mental illnesses, and then creating the symptoms of the mental illnesses with their drugs, merely because a person volunteers their time, and works on long run financial endeavors, rather than working a regular job. What the psychiatric industry is judging people based upon has nothing to do with medical care – one’s production and consumption level within society at a particular point in time isn’t related to physical wellbeing.

A state of “low functioning” can be a time of meaningful personal evaluation and re-evaluation that makes later functioning more likely.

I found my psychotic episode to be very productive, and for months after that I gained a renewed and more realistic perspective on a lot of meaningful issues in my life. I think this “high” and “low” functioning is especially pernicious for women who are expected to dedicate themselves to any number of others and are considered to be selfish when we focus on ourselves to the exclusion of others, and let them take care of themselves for a while.

I’m probably not going to contribute much to this debate, but I especially appreciate what B is saying. No pill is going to make someone socially outgoing and successful. It is up to the individual to do the work. The labels are huge stumbling blocks. Autism, Aspergers (recently dropped from the DSM), Schizophrenia, etc., cause many people to freeze, and declare themselves virtually “dead” – unable to rise above their diagnosis. They are expected to “be their diagnosis” and live out their lives accordingly. “Low functioning” and “high functioning” – I detest those descriptions, too, because they imply that the person is incapable of moving out of the situation. At the most, one could move from “low functioning” to “high functioning” and yet, it still implies “chronic case.”
Thanks, wileywitch – I agree, based on what I’ve seen with my relative. “There’s a lot going on beneath the surface even when one is labelled “Low functioning.” Properly understood and handled, it can be a period of consolidation and growth.

Even after reading the comments, I continue to be unclear about what others mean by ‘low functioning’ vs ‘high functioning.’ If it’s about money, job, etc., I don’t see how this could be a measure of anything, other than following the ‘rules of society,’ which, in essence, is indoctrination to the norms, for fear of being perceived as ‘different.’ That speaks to internalized shame and self-stigma, which, indeed, is powerlessness and lack of sense of self. Indeed, that is a dreadful feeling, having been there, done it. Getting over the fear of being different is liberating and healing.

Going against the grain with purpose and self-awareness is what leads to new ground and desirable changes. Being self-accepting, self-validating, and self-loving is what brings clarity, balance, health, well-being and joy. Who cares about anything else?

Indeed, if that is how we are perceived as children and identified this way, then I can see how this would become an internalized self-identity, which of course, would haunt until rectified with good healing. That would involve practicing the self-validating approach, and sure, it can require a lot of practice, focus, and diligence to rewrite this internalized message, because the thoughts and beliefs we practice repeatedly become ingrained as neural pathways, . But, we can change this ourselves, with practice, which, personally, I feel it’s essential for ease, clarity, and good quality of life.

As adults, however, I’ve certainly noticed the variability in my functioning from time to time, but that is only relative to what I know is my usual habit and also my potential. It’s why I’m a bit proponent of know yourself, heal yourself, grow yourself, and forget about what others think, if it doesn’t feel good to you. That’s the kind of specious and sabotaging support we’re trying to replace with genuine compassion and empathy, based on a perspective other than what ‘others’ expect. Relying on the observation of others, as opposed to knowing our own truth, is the essence of powerlessness, and leads to all sorts of co-dependent stuck-ness.

Oops…I meant to say, “UNTIL we can ascend this need to please…we become lost…”

Language does *NOT* matter when you are an adult with autism.

What matters is the constant fear of homelessness. The depression. The anxiety. The inability to work. The realization that even the people supposedly here to help you are focusing on pointless academic exercises such as “language matters!” while you yourself are hoping to just make it through another day without constantly thinking of suicide as your only option.

I’m so tired of “autism is a gift!” and this feel-good nonsense.

We’re DYING without support.

And you know what? Call me “low-function”, call me a “stupid retard” if that will get me SSDI.

Otherwise you can pass me on the street as I’m asking for change because I wasn’t one of the lucky autistics who have rich or supportive families.

This is good for those who aren’t facing the hell that I (and others) face every single day of our lives.

So, sorry, this article is nonsense and you are hurting us.

B you pegged it: “we are not low functioning, the society is.” The need to be able to categorize us according to rather arbitrary criteria is not done for our sake, but it sure makes applying for grants or lobbying for next year’s departmental budget a smoother process. All-or-nothing labeling stinks. We have areas where we function better than we do in other areas. It can even vary tremendously day to day. I have a brain injury, sleep movement disorder and assorted other psychosocial diagnoses/issues, making consistent quality sleep my Holy Grail. On my best days I feel like I function as well as I ever did and should absolutely be able to work. But those days are all too rare.

When I accepted the bipolar diagnosis (I have since re-evaluated this, am still unsure), I tried to get help. I could get my drugs from PAP, I had lucidity and clarity to reject overdrugging (fortunately). Financially, I hit between all of the cracks. They wanted me to sell my low cost mortgage/house, to pay more money for rent, because owning assets while “disabled” is a problem.

I was able to work. Sometimes only 10 hours per week. Sometimes, in a good week – 20 hours. But I worked in accounting, doing books and computerizing records. I made $15 an hour doing this. Because my mortgage was cheap, I could just get by on this. But no dentist, no therapy, no other support.

This was “high functioning,” and the hospital had a charity program which helped with my mental health (psychiatrist and group therapy – the latter a waste of time). I got no help at all.

I have since moved to Australia, where I have not filed for disability, despite being often housebound, and unable to produce income, though I do about 10-15 hours a week on the internet as a volunteer.

I have friends in the USA who have gone from “low functioning” – as in no job, no car, no visible means of support – to “moderately functioning,” as in – part time work, able to pay some bills. This “middle class” of “moderately functioning” equals hell. The system punishes her for being better. She was more supported and flush when she was “low functioning”, and they are pulling the rug out from under her at “moderately functioning.” Her rent is higher, she gets no food assistance, and if she earns too much money (at least that is a sliding scale, and hasn’t come into play yet – but it could) she will lose huge chunks of her disability. She is punished by the medicare requirements of paying premiums (that she never had to pay when she was “low functioning” plus governmental changes).

So while I understand that “low functioning” and “high functioning” help the government decide what will help – and I understand that this classification is arbitrary and demeaning,

I would also like to recognize that functioning is a spectrum. And the people in the middle suffer the most.

I understand you view and facts. Perhaps of anything in this current hard reality of the USA, the continued abuse of people not only by words but by deeds. In that the words the definitions grant the actions and mentalities on us, it is a cudgel, used at will.

On the streets for sure, but the office bureaucrat is no less damaging, if anything more so and less honest in the abuse. I am person who like many understand in the 21 Century the Terrible has Happened. We do not see people anymore we see the label and the label of the products they ware.

Are words are passionless, empty and dead. The real psychic epidemic is just that – are privacy is gone, or sense of the earth, our sense of self is no bought and sold, not only by the corporations but by the government and media.

Honestly, the attacks on the mental world or multi dimensional and the news keeps counting the body count of the fallen and words: troubled, homeless and this THAT! So many gunned down and beaten to death from what you put forth that is the horrific now.. from this I understand the Germans of 1938 -45

Leah – Thank you. I am sure you were considering the failure of third person objectivity to capture the intrinsic meaningfulness of the psychologically impaired person’s level of functioning in their own terms. For myself, taking myself as I am and imagining myself as worse than ever or just worse than now and like some earlier times, I can accept the idea that saying “incapacitated” described me, as it still does. But this is because I can reasonably envision increased capacitation, and never couldn’t refer to the chance to improve or regain some particular or general aptitude that had disappeared for me. Or appreciate myself differently and better. Which is part of functioning at my best, indeed. And all these matters of attitude and ability can be pointed to by someone else, fairly enough. But you would definitely have to ask me if I were myself content with the idea of how high or low my functioning was in terms of my own idea of that and how I was doing working at recovery and adjustment and evaluating my strengths and weaknesses on the way. The question would come to first person perspective even to decide the shades of difference between real and perceived levels of functioning.

Having unusual experiences because of incapacitation or “unsuitability for work” makes for as much of a demand on yourself, as the constantly learning person you are, as having novel experiences that are unusual in the sense that the environmental and social conditions are all unfamiliar to you or unpredictably arranged to serve some purposes you are unprepared to adopt as yours. That is what people leave out of their understanding for us who have a different and trying time of it because the changes happened inside more than outside: that the whole person me is still there recognizing things that count, working at how to act, and how to get to be and have what I want to happen. First that impinges on me– the uniquely demanding situation involving me as less well-adjusted to stressful and uncertain things. Second comes the nearly automatically decided social exclusion and scapegoating. Last are these unhelpful descriptors–no longer just there as they were manufactured to be there. But now really standing as my obstacles. That is the game of mental healthcare: say the words we need to hear patient’s say and have the relationships that do the good we say patient’s need done for themselves–and you’re cured.

More simply, I can’t see how I am working with this conception of myself anymore, that means objectifying my functioning as high or low. Looking at moods as high or low became too narrow, also, and too limiting. Cat moods (ala Desmond Morris) made more sense: alert, aggressive, agitated, defensive, and relaxed. Getting at why the evaluation wasn’t needed hadn’t crossed my mind until your article, and I suppose it would take very easy to do fudging to answer the questionairre that said “Rate your high/low functioning”. But the key thing is how does my routine, or anybody’s routine, go. Very much less jargon-y: Was that my best effort? How was it compared to my expected and hoped for day? Should I change the plan for tomorrow? What might have most helped to know that only my failures today taught me to understand? Thanks again, Leah. (It looks like the first time commenting I was affected by so-called flashbacks and practically unable to feel anything, noticed something wrong but not what. But everything is better now with my uninterrupted awareness of constant stress.)

“Language matters.” Good empowering examples of that in your article including your perfect words in conclusion.