Functioning Labels

When my daughter was two-years old she was diagnosed with PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified).  People assured us she was “mild” and she would certainly be mainstreamed by kindergarten.  When she was not mainstreamed, people shrugged and suggested any number of things we might do to ensure she have that meteoric rise that everyone kept saying was just around the corner.  When that meteoric rise did not occur people stopped using the word mild and the word “autism” replaced the initials PDD-NOS on her IEP.

During those early years I didn’t spend much time considering or questioning functioning labels, what they really meant, how they were being used, other than to say when people inquired, that my daughter was “mild”.  And then we went to Em’s  neurologist where I happened to say something about how Emma was “mild” and the neurologist said, in a tone of poorly concealed shock, “Well no.  I wouldn’t say she was mild.”

“You wouldn’t?” I asked in surprise.  “Well what would you say?”

He looked away from me before answering, “I would say she was… moderate, but mild?  No.”

I was stunned.  The idea that my daughter was not “mildly autistic” had not occurred to me.  Those two words that I had clung to during those early years, were suddenly ripped from my grasp.  I stood there trying to remember to breathe.  And I remember that sinking feeling in my gut.  That feeling you feel when you see something massive barreling toward you and you know there’s no chance you’ll be able to get out of the way in time.  There have been a handful of defining moments during this crazy journey that began when I first heard the word autism uttered in reference to my young child and this moment at the neurologist’s was one of them.  At the time I couldn’t speak.  What was there to say?  My knowledge of functioning labels was almost non-existent and what I thought I knew about them caused me to make a whole series of assumptions I would later find were wrong, each and every one of them, completely, categorically, wrong.

It has taken me many, many years to deconstruct what people are attempting to say when they use functioning labels.  I have found the use of these labels is uniformly inaccurate, misguided and does far more harm than good.  I understand they serve as a short-hand for insurance companies, schools and various medical institutions, but I strongly believe we as a society need to re-examine the words we are applying to a great many people and the disservice these labels are doing.  Rather than labeling someone mild, moderate or severe we should be looking at the specific needs each person has, breaking those needs down into more specific language that would better serve them.

As an example (this is in an ideal world):

A eleven-year old Autistic girl who has some verbal language, but relies heavily on scripts should be encouraged and taught to type and/or write.  An iPad should be made available to her during school hours and in the home.  Pointing skills should be a priority and supportive typing techniques should be explored.

Teaching grade level material in an engaging way, using visual, auditory, tactile and kinesthetic teaching techniques is essential.

As this young girl shows a need for intense sensory input and craves an audience, as well as displays strong leadership qualities – drama, acting and theatre classes should be included in her curriculum.  It turns out she is also very musical and is a talented singer with excellent aptitudes for both melody and rhythm – therefore music should be incorporated into her day as well.

This same young girl has shown athletic abilities.  She has core weakness and sequencing issues, therefore gymnastics, swimming and track should be essential components of her day, etc.

I could go on and on here, but the point is, if this same young girl is presented simply as “moderately” autistic how does that help her receive the specific things she needs in order to flourish?  Does the label help her at all or does it suggest a level of incompetence?   Is she relegated to a special education classroom where she is taught “life skills” at the exclusion of all else?  What does this functioning label do to our expectations of her?  Do we “dumb down” her learning materials because we assume she cannot possible understand?  Just because she enjoys watching the same video over and over for years on end, do we assume this is an accurate gauge of intellectual capability or do we entertain the notion that this is a way to calm herself with something that is familiar?  How does the label help her parents understand their child? How does the label “moderate” help educational and medical establishments help her?  How does a “moderate” label directly influence the goals that are then listed on her IEP?

Functioning labels are more than just meaningless constructs; they are doing damage. I understand the arguments for why people feel strongly they are necessary, but I disagree.  Functioning labels need to be tossed aside.  None are being served by them.

Em during her gymnastics class


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37 responses to “Functioning Labels

  1. Yep. Toss the unhelpful labels. Build on the strengths and encourage every language of preference.

  2. God yes…another great article. When my daughter was little, she got the autism diagnosis, but the evaluator hinted it was only to get more services, said her words were a “good sign” etc. Other therapists kept saying she had so much initial language, surely she will “fly” etc. Didn’t happen. In fact, with too much therapy came a shut down. And then they shrugged their shoulders and dismissed my innovative ideas to help her understand the world and express herself. It is so crucial to focus on the strengths. These kiddos are like any others, they need their confidence built up too, and how can that happen with constant correction, redirection, and errorless teaching? It makes absolutely no sense to me now, but, sadly, I drunk the Koolaid at the time.

    • Oh my, this describes our experience almost exactly. We were told they were giving her the PDD-NOS diagnosis because they weren’t sure she was autistic, but that she certainly needed early intervention, so this would ensure we would get the maximum amount available. When none of that helped and in fact she began to “regress” (her ABA pre-school principal’s words, not mine) they said we weren’t doing ABA at home properly and suggested we give her more speech therapy! No one spoke of typing or the importance of her learning to express herself through any other way, it was verbal or nothing! And yeah, I was sipping the Koolaid right there with you!

  3. And we we are trying AAC (Proloquo) now…wish us luck! Your articles got me thinking seriously about it and I hired a consultant. Thank you.

    • I do wish you luck! I’m cheering you on, in fact. I’m just finishing up Ralph James Savarese’s book Reasonable People. It’s a big book, but I have found his detailed description of their using FC incredibly helpful. He describes the process and quotes his son’s typed words through out the book. There is nothing “magical” about the process and he documents their relentless hard work and dogged determination to help their son communicate, though DJ is non-speaking. His book has helped me more than any other, forge ahead with the FC, particularly when I’ve felt discouraged. It is a lengthy process (or it has been for us). We began doing this in November of last year and we are by no means able to support her well enough that she can write whole paragraphs, but every so often, at least once a week, if not more, I get a gem of a sentence that blows my mind and keeps me plugging away. Good luck, good luck!!

  4. Thanks so much for your post. We did our own IEP for that reason, one that was focused on strengths. I took it from the goal of let me learn about this wonderful child, how she leans, what she likes, and then I’ll see how I can adapt my teaching to her learning style. We are starting our home kindergarten this year, and she is excited to learn. I learned a lot from your recent posts, and we are integrating academics in a way that challenges her but respects her way of learning. Thank you.

  5. Your post today was so perfectly timed! My husband and I were discussing labels in great length last evening! My son won’t qualify for ECI with a deficit of 23% and they require 25% or a diagnosis. So we’ve been torn about the whole label issue lately. We, of course, want our son to be afforded every opportunity but it is such a frustrating thing that insurance and school systems want to label our children before they are even out of the gate!

    Jp has obvious social issues but they aren’t so profound (he enjoys the company of other children but personal interaction is significantly limited) that it’s a no-brainer for us.

    I loved reading your thoughts! What is a label? Does it change who my son is? Does it change what he needs to succeed? Why are we so obsessed as a culture with naming everything and putting it into a category so it’s tangible for us?

    I just know that I have a beautiful child with so much potential! Isn’t that enough?

    • It IS so frustrating and the way things are set up, we are being forced to use these ridiculous labels that are not helpful to get help that isn’t necessarily helping! Grrrrrrrr

      • It’s insanity! We were told insurance doesn’t deem Jp’s deficit “worthy” of paying for (even though his receptive tested only 3 points out of severe) because his expressive is “age appropriate” (though he needs so much repetition and support that it’s difficult for me to agree that it’s particularly appropriate) He’s only 2 percentage points out of ECI…so everyone is pushing and pushing for us to label him to claim any services at all!

        But with mainstreaming seeming imminent…will that label help or hurt him? It’s so hard to know! I wish so much that we as a society weren’t so insistent on making parents make these kinds of choices. Can’t we just see the potential? Why can’t we just evaluate a child’s individual needs without calling it something? Frustrating is an understatement, for certain.

  6. Read this, It’s fantastic. Really helped to open my eyes and see the major flaws in using functioning labels. Thank you for sharing your insightful words.

  7. You have done a brilliant job of deconstructing Emma’s special abilities.
    I can say my son has a similar profile. I sat down, took stock and did the same thing last year when I found that all the therapies were not working for him.
    I have written out all his special abilities and his aids to learning on paper, to give every person that works with him, so that they can enable him, rather than disable him.
    I firmly believe that this work of deconstruction is key to overcoming significant barriers in the educational process and so that our efforts as parents are maximized and our children can attain their greatest potential.

  8. She is SO lucky to have you! No one ever noticed my scripts, and always forced me to speak instead of pointing (that never went well no matter how I tried). Thank you so much for seeing her and supporting her and accepting her.

  9. Wow. This was brilliant. My daughter is 9 and seems very similar to Emma. She was originally diagnosed as PDD-NOS. The team debated for an hour whether or not she was even ON the spectrum. They assured me she was “mild.” And I too can remember the shock when a specialist first used the word moderate. In my experience, the label varies depending on what particular deficit the person is most focused on.
    At my daughter’s IEP in January, I finally brought up ACT. My district said she was verbal (well, sort of) and that ACT was only for non-verbal kids. I insisted. Now they are dragging their feet on scheduling the assessment. Sigh. But this discussion has got me thinking about deconstructing everything and taking a hard look at what’s working and what’s not. Over-drilling has proven disastrous to my child’s academic success. I’m having a hard time getting anyone to agree with me on that. But I know my child is capable of so much more than the school is expecting of her. The first step is for me to get clear on what her specific strengths are. Thanks for getting me to think about this topic.

    • Oh Cynthia, good luck with all of that. We have been so lucky in finding a school and teacher who is so enthusiastic in working with us and doing all that we suggest. It’s ridiculous that this is RARE!

  10. Well you know my standard rant on how functioning labels don’t take into account the varying nature of capacity over time for one but they are also hugely biased towards productive speech and measured cognition. Like Amber says you wind up in situations where receptive speech can be an ongong issue but for some reason even thought (unless you talk way too much) you spend most of your life listening they might still consider you high functioning.

    I’m in the ridiculous situation where if I tell someone I am autistic they nearly always feel they have to say “obviously high functioning” when in pretty well every area other than the ability to produce speech when not under stress and not having an IQ that they could measure (sadly in the wrong direction as far as that helping with services) that nothing else actually matters when they pull these levels out of their posteriors (pardon me but that’s the only place I think they could get them and have them not realize how useless they are ) it’s silly. The level system does change with the new DSM in that each thing will get a number which might be an improvment although it still won’t adequately represent fluctuation.

    I get that part of the obviously high functioning script on the NTs part is somehow a comfort mechanism (I don’t get if it is meant to comfort them or me as it usually just annoys the heck out of me) Currently my doctor actually agrees that on the bulk of the measures I wouldn’t be high but the wait for the same tests I have failed with flying colours several times before is long.

    Cynthia if you know your child is capable of more than the school does why don’t you just follow your own instincts when it is you who is in charge not them. I worked as a respite care giver and every client I had was capable of more than the experts thought. You as their parent know best. Just say to heck with them and follow what your daughter seems interested in,

  11. Thank you. Again, and again. 🙂

  12. Amen sister! My child is “moderate” but so much more! He can ride a bike, swim, dress himself, keep his schedule to the minute (but you have to watch that because the OCD about the time can get a bit much). Multiply divide add subtract, read (since 4) and comprehend (though it takes some pictures and some re-readings), love his family in a way that not all of them realize, kiss, snuggle, make wonderful little whimsical stories, verbally stim like it is going out of style, sing, and sweet talk his cat. I love it that you wrote this. Beautiful!

  13. When Emma was 4 she would pull her books out of her bookcase and arrange them in pattern that really seemed to be saying something. I begged her ot to come to the house to see this. Somehow he was always busy. I couldn’t convince the teacher in her preschool that she was more capable than what she was showing her class, so all the labels began. I recently asked Emma about those books and patterns. She told me that she was reading them and arranging them according to subject or something each had in common, puzzle-piece like. She stopped because no one seemed to notice after awhile. Even typing this is painful as I think of how helpless she must have felt.
    While our introduction to supported typing is vastly different than yours and your daughters, it has been truly been like a rebirth. Emma is very involved in all aspects of her education. Sometimes when I feel stumped over some subject, she will tell me how she needs it to be explained to her.
    I guess the truth is, trust what your daughter tells you. She can now. And always has, probably like mine did. daughter started to type longer sentences after she began to feel the letters. She complained to me that she could see in her head what she wanted to say but her mouth would say different words. Somehow we started having her write the words into her hand so she could feel the word. It was pretty cool.

    • Oh Paige, I keep meaning to DM you. Will try to remember when I get a break today. Yeah. Learning of these things later… we haven’t gotten to that point yet, but I have no doubt we will.
      Feeling the letters… this is something we thought about, but haven’t tried in the way you describe. I’m going to show Em and see what she thinks.
      Sending you both hugs.

  14. All of this gives me such a yearning to get into a classroom as an EA, yet, with my experience as a preschool teacher and what I hear and see, I am skeptical about being placed in a classroom where there is space to allow us to build on strengths.

    • And yet, a teacher can have such an incredible impact, even when cobbled by a school’s ignorance. So if the desire is there I urge you to follow it! Em’s current teacher is amazing. I have never felt this way about any of her teachers before. But her willingness, open-mindedness, eagerness to explore anything that might prove helpful astounds me on a daily basis. She is not only impacting my daughter’s life with her positive energy, presumption of competence and ability to see beyond the “labels”, she is impacting my husband and my life as well. Incredibly, she is so, so rare.

  15. The Ablls is the only assessment tool that ever gave me a realistic understanding of where my kids are and what they needed to learn next. Everything else is about resource distribution and someone else’s need to categorize people like specimens in a biology lab.

  16. I agree with you labels don’t serve anybody I can’t walk that doesn’t make me disabled.

  17. Agreed! Agreed! Labels are frankly, useless. We SLP’s use a lot of words like “significant”, “mild” and “moderate” as well. Why do we use these? What do they mean? These labels are so subjective, and so open to interpretation. What someone sees as “moderate” I might see as “mild” and vice-versa. And as you said, what information does that type of label really offer a child?
    I’ve stopped using such labels in my reports, and when I’m speaking about a child, and I almost find a pushback as a result. Many seem to think I’m being too specific, or too nitpicky when I say something to the effect of “well, saying “significant” might not be clear – why don’t we look at how well she’s communicating right now – can we examine how effectively she’s communicating wants and needs?”
    This is quite a concept for some it would seem…and doesn’t fit into the perfect roles that so many therapists and practitioners seem to want to fit children into…

  18. Pingback: Not high-functioning | Autism through the Medium of Cats

  19. Pingback: Why Functioning Labels Harm the Autistic Community – ABLEISM- discrimination in prejudice among disabled people

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