Emma Recommends…

Someone asked Emma what she’d recommend they say in answer to the question, “how high functioning is your child?”

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 have thought about Emma’s response a great deal since she wrote it and asked her if it would be okay to write a bit more about this, specifically in relation to some of the issues Emma confronts on a daily basis.   Emma gave me permission.

“Red car, red truck, red car, red car, red car, red truck, red backpack, red car, red car, red car, red car, red truck, red van, red car…”  Emma said as we drove to the airport yesterday.

It is inaccurate to say Emma does not speak.  She does speak and her words are accurate in that we did pass all of those things in exactly the order she listed.  In fact, a few times when I protested because I did not see a red car pass us, after Emma said, “red car,” Emma will correct me and point to a parking lot father away that I had not noticed, where there was a red car.   If there is one thing I have come to understand, it is that my daughter is never wrong about such things.  If she says, “red sweater” it is not a fantasy, it is because she just saw someone wearing a red sweater, even if I didn’t see them or notice.

Emma has never lined up toys, but she lines up words.  To those of us new to all of this, it can seem strange, even bizarre, but it is her way of taking care of herself and is calming to her, please read more about Emma’s thoughts on self-care ‘here‘.  However to people who do not know Emma, they listen to her, try to engage her in conversation and then make assumptions about her intelligence based upon the list of words she utters.  If they try to engage in a conversation about the red car we just passed, Emma will typically ignore them and continue with her list.

When it comes to “functioning” labels, people who try to have a conversation with Emma will, typically, come to the conclusion she is “moderately” or “severely” autistic.  People take this to mean she is “low” functioning.  But if someone reads a post, like this ‘one’ that Emma wrote, pointing to one letter at a time on her stencil board, they may assume she is “high functioning” or they may come to some other conclusion, but they will not assume she is “severe”.

Until we were able to help Emma tell us what she was thinking, we had no idea what she was capable of.  A little over a year ago her school sent home “reading comprehension” work.  Emma was unable to do any of it.  At the time we tried a number of different things, but still Emma was unable to answer the questions as they were written and it was assumed she did not understand the simple story given to her.  We had no idea how completely wrong we were in our assumptions.  It was the same with the ongoing insistence that she read out loud and that when she could not, this also then meant that she was unable to read silently or at all.

The same thing happened with simple addition and subtraction.  It was assumed Emma could not do the math sheets being given, meanwhile she not only knew addition and subtraction, but knew multiplication and division, despite having never been formally taught either one.  These assumptions were repeated when it came to telling time and the concept of money or what a penny, nickel, dime or quarter were worth.  At her IEP meetings it was assumed these “concepts” were too abstract and difficult for her to comprehend.  None of us had any idea just how wrong we were.

I wrote about some of this ‘here‘ and ‘here‘.  Now, just over a year later I re-read those older posts and am so grateful we know better.  Knowing better has changed everything, but had someone told me just over a year ago that Emma would be writing the insightful, wise and incredibly philosophical posts for this blog that she has been recently, I would have been incredulous.  As I’ve said before, this is much more an example of my neurological limitations than it is of anything else.

“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.”

Thank you Emma for being patient with us!

"Red Dress"

“Red Dress”

33 responses to “Emma Recommends…

  1. Go, Emma! Beautifully spoken and even more eloquent in your empathy for our neurotypical limitations.

  2. Very true:
    1. NTs do need us to have patience with them for they are very slow to learn our truths. Even though as a tribe we have been incredibly patient with neuro majority people for decades upon decades, this attribute of patience is not paired with autistic traits. In fact, it is usually only negative words in the list of autistic traits.

    2. Functioning labels will not help those who want to understand. Unfortunately, the majority do not want to understand. That group of people who do want to understand is in the minority, but even so we must keep on keeping on changing the paradigm one blog at a time, hoping the understanding minority will become the status quo at some point in the future – maybe in Emma’s lifetime!

    So glad we have another voice to join in now! (This means you Emma! <3)

  3. When labels become ‘entities,’ they develop a life of their own, and the original meaning of the term is forgotten. ‘Non-verbal’ is one of those terms, meant to describe ‘non-speaking’ back at a time when “We” thought speech= language. Now over-used and misused, ‘non-verbal’ is antiquated and should be stricken from our vernacular because the inaccurate presumption — ‘without language’ — is still being made.

    Similarly, ‘low functioning’ and ‘high functioning’ are terms coined at a time when “We” thought performance=intellectual competence. Again, over-used and misused, the inaccurate presumption about intelligence is still being made, and these terms, too, should be stricken from our vernacular.

    What the terms “speaking” and “functioning” have in common is motor output. Speech is movement, as is all functioning. By definition, “functioning” means “being in action,” using a body part to operate, performing, behaving, doing work, etc. All the definitions are about motor movement; none is about intellectual capacity or competency.

    Thank you, Emma, for sharing your competency with the world! You are helping us ‘function’ better and better each day. Some day, “We” might even be ‘high functioning.’

  4. I did not know she would figure out how to bring across her crackling, sparkly ideas within the year even though I could without doubt tell she had them. What interests me is that people don’t naturally put it together that characters who soothe themselves by noticing fine detail and complex pattern are liable to have detail and complexity going on in their minds. Otherwise, why be soothed in the recognition? Note clearly that I do not believe detail and complexity are superior to other ways our minds can filter the things in the world; I am just wishing we would be able to see each other as we are so that all of us would be able to have that feeling of being known and understood. And you, Ariane, are on the side of helping this happen. Love. PS can Emma totally tell time, like feel it? Or just do it procedurally, but not internally, like me? Will you ask her?

    • (((Ibby))) Hugs and blankets to you dear, wonderful friend! (It was 4 degrees this morning, with the wind chill it felt like -16, according to my weather app!)
      I will ask Emma about time. Am interested to know too!

  5. Philip wrote something similar yesterday in response to overhearing an adult conversation around when someone should be taken off a ventilator. It speaks to our neurotypical misunderstanding of what a life worth living is.

    Philip, age 10, wrote:
    “The right thing to do is always accept life. I am sad when tons of people doubt me. I am sad when tons of people wish I was dead. People single us autistics out to not understand. I was sad when (person) said it was not worth living if she could not communicate. I think it is wrong to think that people who don’t communicate don’t feel. Really upset that letterboard is easy to dismiss as utter nonsense. I am sad each autistic must prove his worth. Sometimes I wish I talked. I am happy to be Mom’s kid. I am outside normal. I am one lonely boy. Each day is a daring one and I will each day in each way stop you and stop the world each time it gets us wrong.”

    • Lisa, this is really wonderful. Please tell Philip – thank you so much for letting your mom post this here, Philip. Emma will see all of these comments later when she gets home!

  6. I am very new to the autism world. The beautiful children that I have the fortune to see and work with are so individually unique in this world.
    I have a question, how did you discover this board was Emma’s way to communicate? I have heard of many children finding their outlets, but I am unsure of how to help my student. I am an LRE aid and would love to help my student find a tool that provides an outlet for him to share thoughts, feelings, frustrations, etc. I so want to help him but I do not have enough knowledge to know all of the resources available.
    I know he is very smart and when I see him grasp a new concept, I often wonder how long he has really known this or how much does he already know before I even present a “new” concept. I know when my own son is bored at school, he can drift off because he knows something already. So I am sure my student has the same tendencies and tunes me out (but it is displayed in different, inappropriate ways).
    Thank you for your insight and help.

    • Hi Nancy,
      Soma Mukhopadhyay’s “rapid prompting method” is something that a number of friends have tried with their kids and every single one of them were able to communicate without exception.

      Soma was in NYC briefly last year and I signed Emma up for a one on one session. We’ve never looked back. If you type “Soma” and/or “RPM” in the search box on this blog you’ll see more about all of it and how we began. I work with Emma every day for at least 30 minutes or so, though in the beginning I worked for more like 10 minutes. There are days when we will work for 45 minutes, but it is hard work and so I do not do more than that at a single sitting.
      Hope this helps.

  7. “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.”

    Besides being such an astute recommendation, this is so typical of the kindness, compassion, forgiveness and understanding Emma continuously demonstrates, even toward those who give her dirty looks, or roll their eyes, or just stare at her rudely and condescendingly when they see her stimming or hear her speak repetitive phrases.

    Emma is my buddha. If I could only look at the world and at others with her kindness, patience, lack of resentment, complaint, criticism and contempt, how much happier would I be? How much happier would those around me be that have to deal with my chronic discontent?

    Emma is in a very real sense, persecuted daily because she does not yet have the ability to speak her thoughts or converse in ways we (non-autistic) people take for granted. As a result, she is labelled by the “education” and “medical” community as lower-functioning. While it is true that her difficulties with speech and other communication skills make it difficult to navigate independently in our society, she is so much higher-functioning than I am when it comes to the most virtuous thinking I have ever had the privilege to read. What she wrote about this entire issue yesterday bares repeating as an example of just how intelligent and insightful our beautiful Emma is:

    “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.”

    • Yup. I have re-read everything Emma has written many, many times. Just can’t get enough of her kind, loving brilliance!

    • Someday, if Emma gives permission, you guys need to transfer all these writing sessions into a book. It’s like what she says is so *obvious* but people are so blinded by functioning labels and what’s “normal” that they get all caught up in how a child/adult *should* be acting, and not paying attention to the wonderful person themselves.

      It’s speaks sadly for the world we live in.

  8. I think a lot of people who work in special education could learn from this. I have worked as an aide in special education classrooms, and there have been several times when working with kids that could not communicate, that I had a feeling the work they were being given was so boring to them… I got the feeling that they understood it, but just weren’t able to show it, so they were just being forced to do the same stuff over and over again.

    • Have you read Ido Kedar’s book, Ido in Autismland? It is terrific and he talks about just this – having to do the same things over and over because he could not “prove” that he already knew what was being taught.
      The link to it is on the “resources” page on this blog.

  9. Ib,
    What do you mean “feel it” with regard to time telling? This is something I have been wondering about with my son, Nick. Could you please tell us more?
    (Ok with you, Ariane?)

    • Yes, very much okay. Ibby has written about time here – http://tinygracenotes.blogspot.com/2012/11/autism-and-time-agnosia.html – but also am hoping she will have time to respond.

    • I’m not Ib, but I have the same issue, I think, so I’ll hazard a guess: I’d guess what she means is the ability to subconsciously estimate the passage of time. Like if you were told you need to do something in ten minutes, you can probably subconsciously estimate when you need to be done by, without compulsively checking the clock every time you remember it and/or setting a timer.

      I can’t do that. I can tell time on a clock, but I rely on timers for everything because I can’t guestimate “about ten minutes.” I have no mental clock.

  10. She is truly just the most compassionate child. I delight in reading her “Emma-isms”. Thank you for sharing Emma!

  11. I don’t know and probably won’t for some time yet, but on the subject of time E really seems to know what day it is and becomes upset at routine changes when at 4 he shouldn’t be thought to have any concept of them. Eg weekends he seems to be fine but often acts up if a holiday off or when we stopped riding for the winter he was unsettled on Mondays for a few weeks. Something to ponder…I find my somewhat NT mind blown by my son more often than not…still working on not just assuming competence based on his age but stretching my mind to recognize those areas he’s light years ahead. (I say somewhat NT bc I’m just discovering I’m most likely ADD)

  12. booksonaspergersyndrome

    maybe severe, moderate, and mild is the neurotypical way of lining up people the way some people on the spectrum line up things, the way i separate the black and white seeds. (no, i’m not a racists, i’m just autistic, lol).
    Emma is extremely intelligent. God takes with one hand and gives with the other. and that’s not by any means to say Emma is missing something, but those on the spectrum are given more of a struggle than most people.
    Emma is a perfect example of “just because i dont speak doesnt mean i have nothing to say.” perceptive as well, seeing the red car that no one else will see.
    a person can be very smart, but if he/she has no way of showing it, nobody will know. there are many forms of communication, not just words. writing, communicating through pictures, nodding, gestures. everything that lets you know you are understood and to recieve the message the other person is sending falls under the umbrella of communication, this is how i see it.

    • “a person can be very smart, but if he/she has no way of showing it, nobody will know. ” For so long we just didn’t know anything. Literally. And the things we were being told countered everything she is now telling us!

  13. Reblogged this on Coloring Outside The Lines and commented:
    I have always cringed when someone would label my son, and I include myself for I labeled him as well. It made things “easier”to explain things. My son is complex. He doesn’t need a label. He is Chase, and he is autistic with sensory processing issues.

  14. Lately, when I leave a store I find my (red) car now amidst a whole row of red cars. Makes me giggle. Then I take a cellphone pic of all the red vehicles, giggle again, and saunter away like I just picked someone’s pocket.

    • This made me laugh so much! As your basic, unobservant NT, I have to actually talk myself through something like finding my car (mostly failing) or even ‘entering traffic’ (always successful because I talk and talk and talk till it’s safe).

  15. Interesting to read all comments also. First, when Ariane said “unable to answer the questions as they were written ” I thought of my problem with exams–but when I have told the instructor their question was backward, or nonsensical they realized also that it was!?

    I also have a time clock that seems to run all the time so that even upon waking at night I know what time it is–also have a magnetic compass. There have been some times when my compass and everything got messed up when I was traveling with someone else and he was barreling down through the states and I was expected to keep up. My conscious time has stops and starts–or it did. My vision and brain used to run like a slow motion movie going slower, sometimes doing a freeze frame on one picture. The incongruity of time and life used to make me wonder what was wrong with my brain. I wrote in 1993 that the flickering like a candle in the wind would soon be blown completely out, and I felt it was a brain stem thing…and it did, and it was.

    Since “recovering” or the beginning of this time, my brain has become more congruous, and even left and right working together where they seemed to be nearly completely separate at times. I am wondering if other adults have had such physically noticeable things that went on with them–and if they found things they could do to make their brain better? I will be doing my capstone project for my degree this summer and would like to interview others who have “recovered” or can express a before and after, what happened and how it happened, if known. I am combining those with autism, mental illnesses and substance abuse all together into this project, and hope to make a survey and somehow drive traffic to it. Any suggestions?

  16. Pingback: How We Got Here | Emma's Hope Book

  17. Emma and Ariane, thank you, thank you. I love this.
    Functioning labels do not serve anyone’s understanding because they are often used to put people in boxes, mainly for the purpose of dismissing without trying to understand or go deeper. The description of what Emma describes with her words and how that can lead to misunderstanding of her intelligence and communication capabilities is so very very important for people to understand. Thank you for sharing that. I think many families and professionals don’t get that. We do need to listen and think beyond the words, to examine how we process experiences, and keep in mind that there is always complexity.

    Do you find that the difficulty with some of the school exercises is in the presentation and often lack of context and lack of abstract thought? My daughter (who is a January girl like Emma and about to turn six!) is great with science and social studies and grasps the concepts there, but will struggle with the seeming basics of identifying colors or shapes — I think because they are looking for specifics within a concept (i.e. the world is full or colors and shapes, why are we trying to identify and separate without a purpose or context?). It was similar with the lesson on the five senses and what they do. We had an interesting discussion (using word cards and pointing) on the fact that she hears the sun. And when I opened myself to what she was experiencing and stood with her outside — yes, we saw the sun, we felt the sun, and there was nature sounds that were part of the experience, so we heard the sun because she was describing the whole experience of standing out in nature and observing the sun.

    It frustrates me most when autistic adults or families of autistics use functioning labels to separate themselves and to focus on the “gifts” they have while ascribing a “lower functioning” to autistics who do not use spoken language to communicate. I get so angry with the descriptions of “non-verbal” being used to dismiss intelligence or as some sort of dividing line. It simplifies and dismisses a complex situation (some folks have speech difficulty, others language processing, but we all communicate).

    I like the word complexity; if we could recognize the complexity of how experiences, sensory details, and language are processed, maybe we could understand that the complexity is beautiful. Maybe there are not so many strict categories and lines in reality (Is that why people try so hard to create them?) There is communication in movement, in hugs, in laughter. Mr. Rogers was so right — “There are many ways to say I love you” — many ways to express so many things, ways that are not limited by spoken words. And, yes, we can hear the sun.

  18. I am so so happy for your family and for your daughter! It is has been so amazing to watch all the progress you all have made. I have to say I love seeing her pictures with her string/ribbon because in almost every picture of my daughter she is holding her string! In fact I once showed her a picture of Emma (my daughter also has blond hair) and she thought it was her for a second! Thank you for letting us join your journey, I learn so much from your experiences and although ours is so much different, I also see so many similarities in all our kids in that they are all so complex and unique in ways I wasn’t prepared for when we got her diagnosis.

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