Friday, March 14, 2008

I Am Joe's Functioning Label

I am Joe’s (High) Functioning Label. I serve many purposes for people who like to discuss Joe. What I do for Joe himself is less clear, depending often on Joe’s Point of View. I attach myself to Joe’s Autism Label during the Diagnostic Evaluation, which can occur at any point in Joe’s life, though early childhood is best, if Joe desires to be taken at all seriously. Bonding tightly with Joe’s Autism Label, I have the power to make Joe’s Autism “mild,” or less real. (Please note: Though I am not an official part of the diagnosis, this does not make me any less real.)
In discussions of Joe, you may hear that Joe is Notlikemychild (NLMC). NLMC is simply another name for High Functioning Autism. Joe, like other persons with this form of Autism, does not self injure. Joe may have a history of suicide attempts. Joe may have damage to vital organs from years of alcoholic drinking. Joe may have scars from burning or cutting himself. These do not count. Joe is High Functioning; therefore these things have nothing to do with Joe’s Autism. Joe should really know better. Though he may have head-banged, bitten himself and pulled his hair out as a child, Joe no longer does these things (at least not that anyone knows about).

Joe has self care skills which are adequate. Joe’s fear of eviction due to his inability to throw anything away is a result of Joe’s Laziness, not Joe’s Autism. Joe’s fears of legal repercussions due to the bills he forgot to pay are signs of Joe’s Irresponsibility. People with Real Autism lack self care skills on a more fundamental level. Joe remembers to go to the toilet almost every time he should. Joe prepares meals for himself daily. Please do not ask me to be more specific. Joe’s Nutritional Deficiency is not my fault.

Joe may communicate well by typing. As Joe’s Functioning Label, one of my responsibilities is to ensure that Joe not use this skill to speak about Autism. I sometimes fail at this, and in these cases Joe may be subjected to harsh criticism, ridicule or even threats for having forgotten that he is NLMC.

Sometimes, I prevent Joe from needing accommodations in school, and later in the workplace. Often, Joe will be unemployed as an adult. Sometimes he is underemployed, working at low paying jobs which do not engage his interests or make use of his skills. Joe may misunderstand directions or find himself unable to break inefficient patterns, even when warned by his employer. Joe may have difficulty relating to co-workers, quickly finding himself without allies. He may misinterpret the culture of the business he works for, making remarks which are “inappropriate” or failing to appear at the Optionally Required Social Event.

When Joe is fired, I am there to remind him (and everyone else) that this is his own fault. When Joe protests that the employer’s failure to accommodate his Autism may be at least a part of the problem, everyone looks at me in disbelief. I am the evidence Joe needed nothing. I am Joe’s Functioning Label.


  1. That was really brilliant. It really summed up how I feel all the time.

  2. Yyyyyyyyyyyyyyyyup.

  3. It sounds to me like Joe needs more help than his functioning label (or peoples interpretation of it) implies.

    And by the way, though his name is Joe, it might as well be Patrick too, I share a few of the idiosyncrasies or 'failures' listed here.

  4. Great illustration of what's wrong with the "high functioning" label.

    (And then there's its equally evil twin, the "low functioning" label, which ensures that any and all abilities are ignored.)

  5. An excellent thread :). A person's entitlement to help should be based on the help they need, not what label they have.

  6. Excellent.

    And what's more, the savage irony can go much further and deeper, into convoluted "Catch 22" scenarios that would make any NT crazy.

    [irony] My own skills prove that I am far more high-functioning than even Joe, as anyone can see. Therefore, I must not DARE to identify myself as an Autie/Aspie, because that would be proof that I am a petty fraud, a malingerer, a cheap con-man looking for any excuse to go on being the lazy, careless, selfish sociopath that everyone already knows I am. For me to claim any genuine functional difficulties at all just proves that I am a moral degenerate, not only unworthy of accommodation, but unworthy of any shred of respect of dignity. [/irony]

    And that's only the beginning ...


  7. Great post!
    You explained so many subtlties that so many people dismiss or ignore by the convienient use of labels very well.

    Its amazing how far some people will go to ignore someone for what they can't do until it becomes more coveinient to ignore them based on the conveinient expectations of what they claim they "should" be able to do.

  8. I don't know what I can add. Well said.

  9. Just another person saying, well said Bev.

  10. Joe is very lucky to have such a well-spoken label. Great job my friend!

  11. Excellent points ... and very well stated.

    Were but I so eloquent ...

  12. Excellent post. And in addition to actual "functioning labels" being problematic, I think it's also true that "perception of functioning" can impact people negatively regardless of whether their "official" label (if they have one) is even known by others. E.g., the "high functioning" and "low functioning" labels seem to be applied in a kind of informal manner by those interacting with an autistic person, based on their own preconceptions (things like, "Well, she can use speech, so she must be high-functioning", or, "Well, she pulls her hair out sometimes and needs to be reminded to eat, so she must be low-functioning"). In other words, regardless of whether the perception of a person's "functioning" comes from a clinical label or some random person's prejudice, it can still have a similar effect on how we are treated.

    In my own experience the weirdest thing I've been told by a professional with regard to labels is that I'm "not as high-functioning as I should be". And I got told that during a period right after gaining a whole big set of new skills, so I was very mightily confused.

  13. This was brilliant. It's very much like my life is. When I originally applied for disability and was trying to explain Aspergers to the staff psych, she said something like. "How is that any different than being lazy". Functioning labels are CRAP. I come across as relatively normal. I have friends, live in my own apartment, buy my own food ETC. And of course having Aspergers automatically makes me "high functioning". But I have many of the problems Joe has. I have trouble keeping my place clean, I have trouble brushing my teeth every day ETC. This might as well be titled "I am Jennifer's functioning label".

  14. My company hired Joe. Joe was fine at the place where he trained. Joe was sent to another job site to cover for someone who was ill. Joe got lost on the way. Joe did not report for work. Joe went home. Joe's mother called my boss and explained his Asperger's was the reason he was overwhelmed at driving downtown for the first time by himself.

    I requested Joe to be reposted to my site. My boss agreed to allow Joe to be placed in my chain of command.

    Joe was too embarrassed to come back to work. :-(

    I hope I see Joe at GRASP someday.

    I am coming out about my Asperger's. My company was not going to promote me anymore anyway and if I was terminated for it the client would fire the firm and take their contract with them because I am part of their team and frankly they do not know or care what Asperger's is.

    I am also trying to teach the NT's I deal with that high and low functioning are misleading and often pejorative terms.

    Great post as always!


  15. High functioning vs low functioning:

    I'm diagnosed as very high functioning. I wasn't diagnosed until I was 26 years old (I passed as mostly normal all those years), and I have an IQ of 180. That said, I have to be reminded to eat, I get frustrated to the point of quitting at almost every job I've ever had, I have trouble remembering to shower, etc.

    Seriously, what's the difference between high and low functioning, again?

  16. What would a version about a 'low functioning' autistic sound like?
    I've noticed that although I've met a few autistic people who roughly fit into high functioning or low functioning, most are in the middle. For example, what about a kid who can talk fairly well in an ABA program, but spontaneous communicative speech is rare?

  17. Jade,
    Given the subjective nature of the label, I think it's best you ask the labeler.

  18. FYI, CNN is planning a story on the myths of Autism and is asking people to write in.

    " In a report called, the 'Myths of Autism' we hope to dispel any misperceptions about the disorder and the people who live with it. We also want to be very clear that there is still a great deal the scientific community has yet to learn about autism and its related disorders."

  19. Well said. It's amazing how a label can both limit and assist the person who wears it.

  20. I think you should make this post another of your "satrting squares"

  21. Thank you. I told Amanda (Baggs) this for her most recent post, and I now am finding I must tell you, as well.

    I do not see the importance of functioning labels. I am high-functioning in some things, some of the time. Low-functioning in others, much of the time. I cannot always do something one day, or do it as well, as I was able to the day before. Or even later the same day.

    I am me. Not a functioning label.

    And I thank you for reminding me of this.

    Thank you. It is not enough, but it is the only words I can think of, and I hope that is okay.

    Thank you.

  22. Joe liked that quite a bit :)

  23. What a bunch of sick lies! You can't disprove the reality of functioning distinctions when it is so obvious that there are some that are lower and some that are higher functioning. Nothing much has been presented to belie that. I know that a lot of the aspies get jobs, hold them, and even have really advanced ones! Don't pretend that all of you aspies can't stay employed. And I have seen it's the aspies who can have jobs that hold such extreme views. Why is it that the high functioning ones are interested in denying the functioning distinctions? You super smart people pretend you care about those who have so much less ability, but you want so much ability for yourselves, and no more for others! You seem to advocate more assistance for yourselves, but so little for those who can't do basic things. You would be miserable if you had to live as the low functioning do!

    1. You might be interested in this:

  24. If the blog author or anyone else were arguing that people with the high-functioning label universally can't be employed, then how would that reflect the author's point that functioning labels can't be applied because there are so many differences, and hence no one label fits any one person consistently?

    The problem is that not only do the abilities of autistics differ so much between us, and within us across time, but that it's ability in different things. The problem is with the assumption that "If this person can do X, they can/should be able to do Y and Z; if this person can't do X, then they obviously can't do Y or Z." That's the attitudes that functioning labels reinforce.

    People should be given services for their individual needs. That doesn't mean that autistic self-advocates want to hog up all the resources and keep them in the hands of a few. It means we don't want people who give needed services to choose which services are needed based upon one-size-fits-all notions that functioning labels perpetuate.

    It also allows the allocation of services more appropriately, as a service provider, based on the functioning label assumptions, may provide services that are not needed simply because assumptions have been made. Also, if you really want to tackle the problem of services for autistics being so underfunded, you could look into the millions annually spent on genetic research that doesn't help any autistic people today or in the future.

    The fact is, functioning labels don't help provide insight to the autistic individuals in the framework of education (whether special education or mainstream) and they don't help people get needed services. The only way to help an autistic individual is the way you'd help any individual - find out their unique needs and gifts and go from their. Functioning labels only hinder this goal, as well as being used as tools of divisiveness the perpetuation of prejudices.

  25. The only way you can argue against functioning labels is with scare tactics. There is very little to contradict functioning distinctions. Just lots of captious nonsense to disrupt progress. geosaru How could you come out against genetic research and say it wouldn't help? More research should be done and not just genetic, so someday they can find treatments/cures.


  26. bev,

    thank you - |I echo what Jade said

  27. lurker, I've heard many 'low functioning' autistics express a dislike for functioning labels (unless you consider any autistic able to type automatically high functioning, even if they can't speak or look after themselves). The people who seem most strongly opposed to functioning labels are those autistics with the most variable skills, who are therefore hardest to categorize. It's possible to go from a 'high functioning' child to a 'low functioning' adult, such as Cal Montgomery at Ragged Edge Magazine.

  28. Most of the ones I see denouncing functioning labels are high functioning and don't really have variable skills. So the ones I have seen denouncing such labels don't have an excuse. Being only able to type isn't really enough to be high functioning. But the ones who can type are usually the ones who are high functioning. Even if not everyone can easily fall into either the low or high categories, there are still huge and unfair disparities.


  29. Even if not everyone can easily fall into either the low or high categories, there are still huge and unfair disparities.

    I don't think blanket statements about someone's "functioning" help anybody understand those disparities, though. They don't tell you anything about what a person can do or what they can't, what they need help with, etc.

    Also, I see a lot of people in online communities saying stuff like, "I'm higher-functioning than __" or "I'm more disabled than you," or "You (an adult) are much higher-functioning than my child because __" and they're talking about people they've never physically met. Even if functioning labels are valid, there is no way you can tell what a person's functioning level is just by reading about them on the Internet.

  30. --lurker,

    True, "there is very little to contradict functioning distinctions". Of course there are distinctions in how we are able to function in various things. My point (and I believe Bev's as well) is that putting someone into a "high-functioning" box or a "low-functioning" box isn't helpful.

    Why? For one, even aside from the fact that autistics very commonly have good skills in some areas while lacking skills in other areas (in ways often deemed "contradictory", even if they aren't a savant or math genius), our abilities tend to vary greatly over time. Perhaps a lot of skills are gained, while some others are lost, or maybe a lot of skills are lost. But that functioning label often functions to prevent service providers from realizing that you have difficulty doing something, especially if they've seen you do it before. That doesn't apply only to people with the high-functioning label.

    The reason I oppose genetic research is because that research would be used for a prenatal screening test. People who don't know much at all about autistic people but have heard the purely negative media descriptions would be devastated before they even know what it's really like to have an autistic child, and would likely abort. This is what has happened with Down Syndrome (about 90% are aborted). That is a tragedy I don't want to happen with autistic people (and want to stop from happening with DS people). Does the fact that I don't support prenatal detection of Down Syndrome mean that I don't want people to help children with DS to learn and have access to needed services? Heck no. It's likewise with autistics.

    Incidentally, I'm really interested in science and personally would love to know the details of how the genetics of autistics work (in 9th grade I was determined to participate in research studies and eventually become a researcher on autism), but it is this unhappy outcome that I want to avoid so much that I would bitterly accept ignorance of these facts as the price to pay.

    I do not want a cure. So do many people classified as "low-functioning". And while most autistic people who type on the internet would probably be classified as high-functioning, that would be because most of us on the spectrum have this classification. Of autistics as a whole, about 90% speak by age 9, then there are a number of people who speak after that, and a number of people who communicate by other means (such as typing, signing, picture cards).

    I was dx'd Aspergers because I started speaking at expected times as a young child. That doesn't mean speech comes anywhere near easy, though, and frequently it breaks down. It typically takes me a very long time to initiate actions, and if you had videotaped me in a 1st grade classroom, then the way I acted would look very similar to some of the kids in the Autism Everyday video - and even though I could speak, I did it very rarely at school (not because of shyness but difficulty and discomfort). Instructions are difficult for me, especially when spoken, and usually instead of doing what I was supposed to I would sit and stare at a wall, or, occassionally, sort beads. Not to mention anything about the length of time it took me to develop self-help skills that are currently wanting.

    I'm not what professionals would classify "low-functioning" - in fact, I've been told so much I'm sick of it about how "high-functioning" I am by people in special services at the IEP meeting (this is at a high school where you need a 2.0 GPA to get and stay in, and the school day is longer, so meltdowns are frequent). In fact, I think it's only because I have academic skills that my needs have been mostly overlooked (See my blog post "High Scores = High Functioning?").

    In fact, I think education in general is far too "standard packaged", so to speak. One size fits all/many seems to be their model. And to me, summing up an individuals abilities in a functioning label box is not going to lend itself to a particularly "Individualized" Education Plan.

  31. Wow, this is me, that is my label...

  32. Functioning labels assume that a person either can do a bunch of stuff, or can't do a bunch of stuff. I am quite variable in what I can do. Which is why I like Bev's post so much. I can sometimes talk, sometimes not. I can sometimes get it together to go to the grocery store, sometimes not, sometimes not even when the food has run out. My "functioning label" would assume I am just being lazy even when I know I need to eat and can't get to the store. Stuff like that is what Bev is talking about.

  33. when Joe loses a competition on an internationally syndicated show, due to not being able to ask for directions to 6 interviews in one day, in China, you will be there. You will be there to prevent Tyra Banks from coming off as someone who discriminates against "dis-abled"

    Heather, ANTM fans favorite every week she was on.

  34. Not meaning to hurt Joe's feelings, but I was laughing all the way through this one.

    I have less trouble than Joe, but I identify with about half of those things, especially the employment stuff. There is nothing at all wrong with my life that can't be attributed to one of two things - the natural process of aging, or the equally natural process of being discriminated against 'cause I'm close enough to neurotypical that people think I ought to "clean up my act".

  35. Get over it. Autism is a meme, not reality. Free yourselves or remain forver slaves of semantics and society.

  36. Go Joe. Very true. Go everybody.

    We all struggle along, whether LF, HF, Aspie, or NT-mimic. I call myself the latter because my behavior strongly resembles NT.
    I have a job, wife, family, home loan. I dribble and twitch and the spoken word is not always the one I planned to say.

    Who else is confused here? After my diagnosis via all available tests on the intermess. I began to delve and dig into the vast body of autistic knowledge. The contradictions in our individual abilities and the contrasts between us are overwhelming. I need to fit it into a pattern and I can't. I see suffering/enlightenment/the play of massive minds and I feel humbled. I feel flattened by the wisdom oozing at me. I still can't construct a pattern.

    Nowadays I try to be invisible. I applaud you for your courage. I want to tell Lurker to swim in the information before biting or judging. I want a clever person to weave it all into a system that I can write about.

    But seriously: no band practice tonight.

    P B

  37. Lurker, are you are jerk? No, let me ask that question more politely.

    Did you ever use the nom de plume 'Hesed' on Topix? You sound quite like that person?

    Have you, or anyone you know, ever been so afraid of something (i.e. snakes, heights, spiders)that at the mere mention and/or sight of said object of fear that you (or they) were frozen? Or were thinking of one thing to say but said another? Or that you (or they) took odd or drastic measures to avoid anything that you thought would cause you to come in contact of one sort or another with that fear?

    Do you call them or yourself crazy for being afraid? Do you say that no matter how deathly afraid they are, it's nothing and that they should 'get it together already'?

    Those feelings, those problems. They are only the tip of the iceberg for autistics. Don't lambaste them for what APPEARS to be the problem.

    After all, didn't your mother tell you to never judge a book by its cover?

  38. Thank you for posting this - don't know how I missed reading it before but it's just what I needed to hear. My son was denied access to special services last year at his elementary school because he was considered 'too high-functioning' by the school psychologist. I hate the use of labels especially when they're only used to deny someone.

  39. I think you have captured my wife's feelings perfectly. She always mumble "High functioning my ass" or some derivative after failing in some every day attempt. I love her so much, and she wants to go to med school, and she's so smart in some areas and then absolutely cannot grasp others. It just doesn't make sense to categorize her as "high functioning," as if she needs to actually function more poorly to get any extra help from people.

    In her current chemistry class she goes to the SI (supplemental instructions) and comes home to tell me that the instructor spent all the time on all the things she understands and none of the time on any of the things she doesn't understand, because what she "gets" about chemistry is exactly the inverse of what every other kid "gets" and likewise with what she doesn't "get". It's very difficult when she comes off as a savant with regard to naming properties or names of things but can't remember what are supposed to be simple quantitative type formulas.

  40. This post makes me want to cry. But in a good way. Thanks.

  41. I find it very strange to begin with, that many people
    equate the severity of autism with a corresponding measure of "fogginess", I do not see this with all
    neurological disabilities, but it has been my experience in life to have observed this phenomena
    projected on me in different situations when dealing with many different people, but certainly not all people, or else witnessing the same attitude towards
    developmental disabilities in general.

  42. I really appreciate your blog, it is very insightful and
    helpful, and I love the way you have uncovered the
    ugly truth of the "Not like my child", (NLMC)
    phenomena. You can see how that hurts the child
    regardless of their perceived functioning label.

  43. I appreciate your comments. It sounds like something my 17-year-old son would say (if he would think about it). Thanks for reminding me how he must feel daily as an "HFA" or NT-mimic.

  44. thank you. this is a wonderful illustration.

  45. A very smart wordplay representing the discord amongst the world community over the autism cluster of function corresponding to a given category.

    I agree their are variable skill issues, being somewhere in the "middle", or even borderline neurotypical (or borderline Aspergers) presentation. Which can both fustrate the hell out of someone who has Aspergers or similar charactersistics. I have had this emotional experience.

    I also agree that we do have smarts but sometimes don't know how to apply it, in what context. So we could be have an amzing discourse wuith a doctor and no all the inside outs of his profession but have nothing to say to our friends; or speak better in one context than another due to anxiety/stress, sensory, or emotional input.

    In any case, I believe with the proper support someone can identify where they are responsible to their skill level and where the arent' and apply it to life domains. Is their such a thing...? It's pretty rare to have that type of service outside the PDD/ID structure.

    I get that all the time about Aspies working and having a family. I just say that person is damn lucky than, "isn't he..?".

    In addition to the fact of variable presentation, all Aspies are at different maturational, developmental and emotional stages in their life. This can also reflect or be express as a different perspective, motivational issue, or presentation.

    Do many forget that when they werre 18 or perhaps 20 they had wild lives in frat houses; went to all the house parties; got drunk multiple times, forgetting each time the unruley feeling of a hangover. Perhaps they never wanted a gf/bf at one point or never liked a certain type of food or bought a product hey know longer use.

    What we feel, think, ponder changes over time, whether due to biological or environmental means. And we as Aspies are subjected to the same exact growing process, just ours is slower/faster trajectory of growth in certain areas, not correlating with what NT's think of as a normal stage of developement.

    I think both sides of these arguments in the comments should be reflected on.

    What NT's need to do is give us the same respect, benefit-of-the-doubt", and extend the same understanding and acceptance, we would (hopefully) give them.

    Because Im sure we could point out something that is different from the norm in them; it's just that, that difference isn't called anything more than a Jungian personality type or, at it's worse, Borderline Personality Disorder.

    For us as the best advocated we can be to highlight this fact whether we try to do it comedically or bluntly.

    Enuf said...

  46. That was brilliant! And so true! Go check out my new Asperger's blog:

  47. Lurker is apparently the poster child for NLMC.

    Thanks for writing this. It's very much like me, and I sometimes have trouble getting people other than my husband to understand.

  48. Ohh PLEASE, can I apply for the High-Functioning label?! C'mon! I really really wanna be high-functioning, or at least called that. Hmm.. Maybe I can put High-Functioning in my résumé. There. And I can even say I'm endorsed by the APA as "High-Functioning" and that's why they should hire me. I'll leave out the part that APA also endorsed torture disguised as "enhanced interrogation techniques".

    Anyways, in reality I consider myself to be high-functioning, in some areas, yet in other areas, low functioning. Aside from parents desperately wanting their kids to seem above average, of some category or other, the category that describes high-functioning only looks at certain areas, but disregards others. This is why it can be mighty confusing. I would just rather do away with such a subjective criteria for functioning, as though it were octane or something. ��


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