Emma Discusses Functioning Labels

I asked Emma what she thought of the functioning labels applied to Autistic people: mild, moderate, severe, or high functioning and low functioning.  What follows is her response.

“Functioning labels are insulting to me.  And people like me do not like to have others label us as though we were meat at the market.

“I do not think Autistics should be given stamps of disapproval.   How would you like to be graded all the time?

“Money makes people (*not autistic) have a higher functioning label, but it is not a great way to measure the worth of a person or their intellect.

“I am more than any one thing.

“Most people do not behave well under the kind of pressure Autistic people must endure all the time.  A label belongs on a piece of merchandise, not on a human being.

“Do you think you function at a higher level than other people?

“Maybe others would not agree with you.

“Let us all  do the best that we can and stop othering everyone we decide is less capable.”

*I asked Emma whether she meant all people or a particular group of people, she wrote “not autistic”.

Snowy Denver where we are currently snowed in and cannot leave...

Snowy Denver where we are currently snowed in and cannot leave…

48 responses to “Emma Discusses Functioning Labels

  1. I used to know the term “low/high functioning” from alcoholics (according to how much their addiction interfered with their social/professional life). I admit in the beginning I used it because I wanted to make a point that my son’s Asperger’s (his diagnosis to this day) is actually a form of autism because I wanted people to understand the idea of the spectrum.
    Especially through blogs of nonverbal autistic adults but also through the observation of very “nonfunctional” moments in my son, I have understood how wrong and also how dangerous these labels are. Labelled people, especially children will either not be challenged beyond what the determined label defines, or else will be expected to function beyond their own limits. Both can be traumatic and block development…and happiness.
    Wise words from Emma 🙂

    • Exactly. I don’t think any of us would welcome being called “low functioning” or “severe”. These words have become the PC code for “mental retardation” and they are no better and certainly no more accurate than those two words were so many decades ago.

  2. I find this post of Emma’s extremely insightful and poignant. I struggle with the “functioning” label too – what does it even mean as Emma asks. This is very powerful and I particularly like her challenge to us to determine where we would be if we had to nominate to be high or low functioning. Our first question would be: What is the criteria?

    • Right, what is the criteria? And the ability to function or not shifts for all of us. But even more disturbing is the idea that someone can be labeled “severe” as the media does whenever a child is killed by their parent and all of us are suppose to nod our heads and say, “oh well then…” People say we need these labels because it helps our children. This is the opposite, however to what I’ve seen. No one is “helped” by being determined “severe” and many of those who were labeled “severe” Tito Mukhopadhyay, Barb Rentenbach, Larry Bissonnette, Jamie Burke, Tracy Thresher, Amy Sequenzia, Carly Fleischmann, and countless others have ALL gone on to prove how very wrong that label is.

      • Totally agree. Something I have been mulling on of late and have not been game to express publically, is that those “providing services” to the ASD community are often more judgemental with labels than those in mainstream. It is a personal experience and personal opinion only and unqualified of course. We had the swimming teacher with an ASD son who made comments like: “oh yes, your son likes to wear goggles which is very ASD”. Not that the water is incredibly and intolerably chlorinated perhaps? All the adult squad members were wearing goggles too. And the ASD aide who upon learning my son topped the class in science said “Oh yes, it wasn’t a surprise to me as most of “them” are good at science or maths”. There are other examples. Of course I am generalising, but we like to select mainstream teachers as we find they don’t have those preconceptions of ASD.

        • Funny back-to-front world we live in, eh? I was struck by your comment about the goggles and how it reminded me of the deliberate singling out of supposed differences to make someone ‘other’ that was done in the ‘blue eyes’ experiment? Do you know of it? Famous experiment done with primary school children? If not I’ll dig out a link for you.

          I’m also brought to think about the ways so many people can’t handle or won’t handle the concept of self-definition. I’m seeing it in the radical feminist community when they choose to take theory and analysis of trans* people over the actual voices of Trans* people.

          I hope this makes sense? I’m struggling to find my words just now. Fo ask for clarification if needed.

          • Jet Black if you have the link to the experiment I would really like to see it or I can google. Thanks for the offer. I do find it very interesting how my younger son flies under the radar no matter what quirks he might display and yet the older one with ASD is micro-analysed. The ASD aide told me with great concern that my son was engaging in self-talk in the line. I asked the teacher if it was an issue and she said it was completely unnoticeable between one boy picking his nose, the other sucking his hat string, and another flicking pieces of paper. You can find faults under a microscope.

  3. I’m with you 100%, Emma!

    My nephew has sensory processing ‘disorder’ (sic). I choose to call it sensory processing difference/s and I realise that even using that is labelling him as ‘other’. In fact we are all other, i.e. different from each other. And what a splendid diverse world it is. Your writing, sharing, helps make it so. x

    • I too have sensory processing disorder. I believe the thing that others me about it is the fact that my functionality is lowered in the presence of “normal” brightness and volume. Calling it simply a “difference” feels a bit like white-washing to me. It may help self-esteem a bit by pointing out that the differences are purely artificial from a just standpoint, but from my experience not so much. (http://autisticshs.blogspot.com/2013/11/johnson-and-johnson-pays.html) In any case, you sound like an awesome aunt! The fact you even read this blog is really rad’. Just as a by the way, how old is your nephew? Is he school-age, because one thing I wish I had started to do earlier in life was get really indignant about my rights, rather than passively accepting things? Could you communicate to him that being loud–figuratively and/or literally–for your rights is a good thing to do, and the flak one gets from it is not his fault? Thanks. Have a great day!

      • Thanks for that. I do aim to be an awesome aunt and his ma n pa are pretty awesome too in terms of loving him exactly how he is and getting him the right support to flourish. He’s 3.5 yrs old and lives in Prospect Park, Brooklyn so has access to loadsa good stuff. I’ll check out your blog later.

  4. Brilliantly put Emma. This is exactly why I dislike ‘functioning’ labels and I hope the time is coming when they will be dropped completely, as they are so unhelpful to everyone involved. I am so often asked whether my son is mild/moderate/severe or high/low functioning and the questions are not only insulting but also nonsensical.

  5. Emma yay I had to finally stop dancing and doing a standing ovation for your awesome meat market analogy so I could type this to you about my dancing and doing a standing ovation for your awesome meat market analogy!

  6. You’re lucky to be snowed in in Denver — the weather here is godawful — heavy rain on top of several inches of rapidly disappearing snow, with temps expected to plummet tomorrow. It’s a mess.

    I have a pin that reads “Label Jars Not People” — I think Emma has nailed it.

    In the academic literature of autism, “functioning” refers exclusively (so far as I can tell) to intelligence. In the popular mind (as evidenced in the comments here and lots of writing elsewhere) “functioning” has something to do with functioning. Big mistake thinking that words mean something other than what Humpty Dumpty psychiatrists say they mean.

    In real life, functional ability is measured on such scales as the Vineland, and is defined in more or less specific terms in many pieces of legislation, such as the DD Act, which has a definition of developmental disability that talks about functional ability in several life areas.

    Never confuse psychiatry with real life. With all due respect to many of my friends who are psychiatrists and who do real good for real people. They are not the ones who control the conversation.

    • Michael – such a good comment and important too.
      Em told me it was okay to speak specifically about her here in the comments. She has been labeled “mild” (when she was first diagnosed and two years old) then “moderate” and even by some, “severe” and almost all of these pronouncements were made in front of her with little thought or even consideration that she could or might understand.
      We now know she understood, but until I met those who are similar to her and who wrote about their experiences I had no idea. In the beginning I had trouble understanding that what she said was often unintended, but that given the right kind of support she is able to write the profound things she is writing.
      Given that everything we were told was inaccurate and not a reflection of all she is capable of, those labels are no more accurate than any of the other things we were told.

  7. Love your post Emma! Two questions….
    1. How long did it take for Emma to type this (just curious….if it is too personal a question, no big deal)?
    2. If Emma is willing to share, how would she recommend answering the question “how high functioning is s/he?”? Some people ask with good intentions, as they want to know what to “expect” when meeting Nathan. I think some people are trying to measure him up to other autistics by asking this (as they haven’t met or don’t know they have met other autistics). While I always take this question with good intention, I want to make sure I am answering it in a way that is respectful to autistics. Usually I turn the question around and ask “What do you consider to be high functioning?” Typically the person cannot answer the question.

    • 1. 40 minutes
      2. Emma wrote “I recommend being patient with them and saying that functioning labels will almost always give the wrong idea to those who are trying to understand.”

      I will just add that for someone like Emma who loves to say things like, “red car, red sweater, red truck” over and over again, most people listening would make an assumption about her intelligence that would be completely incorrect. Yet if someone reads the posts that she has been writing on this blog and who knew nothing more about her, they would come to another conclusion…

      • Thanks Emma! (and Ariane)
        Yep. That sounds like Nathan. He says a lot of the same stuff over and over, and sometimes when he is trying to talk to me, he says things that I don’t think make sense. But I KNOW that he has considerably more going on in his head than he is able to communicate. He has quite a ways to go with his RPM before he can “prove” this to anyone else.

        • Keep at it, Beth. It took us several months of working every single day for a minimum of 30 minutes before I even got to asking an open ended question. Soma finally told me I had to ask one at the end of each lesson, and though I protested initially and told her I didn’t think we were ready to do that, she insisted that even though I might not be, Emma was.
          Also, I had to begin with choices and having Emma point when I first began even though I knew and had seen Emma doing much more than that. It wasn’t Emma that needed to begin with choices as much as it was me that needed to begin at the beginning with her so that together we could build up trust and slowly, slowly start to move forward together.
          Emma also told me her speech is “unintended”. I love this as it sums up perfectly what’s going on for her.

      • thank you, absolutely incredible! quite often I get upset when I observe very repetitive language in my child it makes me think that she is unable to move from one phrase to another and I conclude that her thinking is limited.

        Looks like I am wrong… 🙂

  8. I am trained to work with people with developmental disabilities including autism, although not what I specialize in myself. But the labels always confused me because why should we label it is not a clear picture of the PERSON. It also may bother me as I have mild cerebral palsy, Attention Deficit Hyperactivity Disorder (ADHD) and also a learning disability called Non Verbal Learning Disorder which is very similar to Aspherger’s. Why am I telling you this, well there were times that people did not expect me to accomplish things an I proved them wrong. I am a determined person and I expect success from those I work with too including my specialty area, children with physical disabilities, especially severe. Right now I am working as a substitute educational assistant where most of the kids in the board have learning disabilities or some behavior difficulties and I don’t put labels I expect them to be them and to succeed.
    Emma you are an extraordinary young woman who puts into words what some of us adults are even afraid to or unable to as to the point as you. Believe in yourself always because you have so many who believe in you, including me

    Sorry for this very long post.. usually really good with my words not always when written so I hope that this makes sense

    • Thank you so much Amanda. We have just returned from a rather long trip, having been delayed for three days and only now have returned home. Emma is too tired to respond to the rest of these comments, but I wanted to thank you for writing this. Emma will read later when she isn’t so tired.

  9. The functioning labels annoy me to no end and do both my boys a disservice. My teenage son has Aspergers and because he is viewed as so close to NT people constantly overestimate his abilities and view him as a spoiled troublemaker because of his meltdowns and inability to focus instead of trying to understand and give him the support he needs. On the flip side my 4yr old is non verbal and has the more classic autism form. Like Emma he is extremely intelligent even doing some academic things ahead of his NT peers, but because he cannot speak and isnt that proficient on his AAC yet, im afraid I’ll be spending more and more time as he gets older fighting people who underestimate his abilities and intelligence. It really isnt fair to either one and the labels theyre given are grossly inaccurate. If functioning is taken at its actual meaning then they both have both high and low functioning areas and a lot of areas everywhere in between. But to try to label their whole being with one side based on just a few criteria is stupid.

  10. Oh and on a second note…Emma you rock! I love reading the words of autistic adults but it is so refreshing that kids such as yourself and Ido etc are now getting your words heard since you are much closer to my kids age and can talk about the autistic experience from a kids perspective. I hope that one day soon you can write about school…about what its like and things that help you or make it hard for you. Many of the adults i pose this question to went to school before inclusion and IEPs and aides and all that so id like to know what its like currently. Right now E goes to a special preschool that is amazing and believes in him but kindergarten and public school scare the crap out of me.

    • Em and I have discussed your thought about school and what it’s like etc. She said she will write about it when she isn’t so tired.

      • Thank you so much Emma I know it is very difficult for you to write…I’m thinking of trying a day only using our longer AAC after reading a post by musingsofanaspie before I send it back…because I think it would help me understand just a little what it’s like for my son. No hurry kindergarten is still year and a half away. He won’t start til he’s almost 6 and just turned 4

  11. I use the label mid-functioning classic autism, because people don’t get that although my son can talk well, he usually understands about a tenth of the words that he uses. He is like a parrot. I work on him with vocabulary and was very discouraged to learn that although I can teach him what a word means, like “simple” (something that is easy to do), he will only retain it for a short time.

    The labels aren’t for those of us who understand, they are for the folks who don’t get it and it’s a way to help them understand without having to stand there and spell it out in a way that my son just might understand and feel bad about. So I use it.

    I also say Charlie has severe autism. I know that usually talking means that it’s not “severe”. But when you add in aggression that makes Mom start thinking about residential placement, it’s severe.

    • The problem is none of us actually know what our children are capable of. You say he cannot retain basic words, but just maybe he is retaining those words, but is unable to tell you he is.
      So much of what you write here are things I once thought and have been proven wrong.
      I hope you’ll look at the Resources page on this blog https://emmashopebook.com/resources/ and look at some of the work by non-speaking Autistic people.

      • No, there are things Charlie has to have re taught several times per week, how to subtract or add. I’ve made flash cards for him to give him cues. Many words. Abstract words or prases such as idioms. He just forgets. But he can tell us the make, model and engine size of any vehicle he hears even from inside the house.

        I believe that as he grows, Charlie will develop more retention. I never give up on Charlie.

        Thanks for the resource list.

        • Hi there,
          Just a thought… take it or leave it… give Charlie a word that you do not believe he knows. Explain (briefly) what the word means and then write down the word, saying each letter out loud as you write it. Write another word, completely unrelated, also saying the word you’re writing and the letters as you write them on a separate piece of paper. If he is auditory you can write them on the same sheet and tear the paper in half. Present him with the two choices. Say, “What was I talking about? ______ or _________ ” (If he can point independently or pick up the piece of paper, ask him to choose the word and see what happens.)

          This is how I began with my daughter, simple choices of things I did not know she understood. Her accuracy was uncanny.

  12. Stuck at DIA?

  13. booksonaspergersyndrome

    I’m going to put this on stumbleupon and twitter so people will see a real person and not just a diagnosis. Emma is a stunning, highly intelligent, mature, and caring person.
    I dont really find it insulting to say someone is mild, moderate, severe. I’m high functioning, which makes life much easier for me. this is just a way to explain that I live independently and can talk. where on the spectrum can you be found. a map of the spectrum. i’m on the easier side, the one with less struggle.

  14. This is great feedback, thank you Emma. I have stopped describing my son as LFA and agree functioning labels are demeaning and in fact don’t even really work too well at a practical level. I also used to describe my son as having classic Autism which I kind of felt described his Autism as opposed to labelling him, but I just read the description of that and it doesn’t fit either to be honest.

    However for the purposes of accommodating needs or discussion it can be useful for other people to be able to understand the nature and the degree of a persons disability/abilities so I currently say my son is non-verbal but is learning to communicate using an iPod and can currently communicate basic needs with it.

  15. Functioning labels suck, but as a parent of Zeke 3.5 yr old with SPD (sensory processing disorder) we find that even we need to use these labels as language shortcuts sometimes. Having said that, it’s not the label you have to fight it’s the prejudice that the label only means a negative attribute or failure, without any positives.

    Because a quiet child doesn’t speak he has more time to listen, and will most probably notice a lot more and be far more sensitive and empathetic than others. As for Zeke, because he seeks sensory input he not only intuitively understands physicality but he reawakens peoples joy just from a deep hug and chances are his abiility to hug will stay with him for life, might not be cool on Wall St, but we live in Brooklyn where hugging is still legal:)

  16. A(wo)men Emma. Officially there has never been any such thing as “high-functioning autism” or “classical autism”. These terms are both horrible lies, perpetuated by those kind of people who love to hate. It is bad enough being rejected by society because you are autistic but to even have non-autistic people within the autistic community reject you because you don’t fit into their ideal of what an autistic person should be like is the vilest form of socially-derived prejudice possible.

  17. Beautifully put, Emma! My four year old Matthew was diagnosed with autism last year (Asperger’s Syndrome, or ‘very high-functioning autism’ as we’re told we must now refer to it). He is still the same child he was before any of this started and I refuse to treat him any differently. Thankfully the UK school system seem supportive in our ‘don’t wrap him in cotton wool’ approach. He ‘functions’ in the same way all humans function, autistic or otherwise, so is to be treated the same way as his classmates. He just has different strengths and weaknesses, like we all do. His only label is his name, Matthew. That’s what matters to us. xx

  18. Pingback: Emma Shines a Light on Functioning Labels | Emma's Hope Book

  19. This is one of those awkward moments when a child is wiser than most adults.

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