pretty pyramids

*

Last week, I read the beginnings of an online conversation in the comments on Mama Be Good’s post Good Trouble. The conversation took place between a parent of an autistic child and an autistic self advocate. One had used the terms ‘high-functioning’ and ‘low-functioning’ and the other had taken issue with the language and what she asserted are its connotations.

I talk an awful lot here about the implications of language and how the words that we use affect those on the spectrum. Broad-stroke generalizations like these are a perfect example. Whether we realize it or not, ‘high-functioning’ and ‘low-functioning’ have the power to validate the assumptions that we make – and allow society to make – regarding both the level of need and the level of ability among people on the spectrum.

I’ll start by saying that I whole-heatedly agree that the categorization of autisms (< — not a typo) along arbitrary lines based upon a binary system that only allows for the two possibilities of ‘high-functioning’ or ‘low-functioning’ is completely artificial and undoubtedly destructive.

There are a million reasons why this language is injurious, but one argument that was put forth in this case is that it creates the false perception that those who fall into this so-called “high-functioning” category need less support then their “lower-functioning” peers.

This isn’t the first time that I’ve heard this argument, but it gave me pause. Because I would argue that to some degree, at least as the terms are typically defined (I’ll get back to this shortly) they do. Or at least radically different support. (In a subsequent comment on Brenda’s post, a person who identified themselves as an autistic self-advocate said something similar.)

A person with some – any – accessible method of communicating with those around him will necessarily need a different level of support than those without. A person with no awareness of or respect for danger, will, by definition need more intensive care than one who is able to understand and avoid it. A person who can cook and clean, who can use the toilet and maintain a safe level of personal hygiene will have very different needs than one who cannot.

But that certainly doesn’t mean that they ALL don’t need support.

And then there’s this issue of how to define “high-functioning” and “low-functioning”? What do those terms actually mean?

I’d submit that they mean a whole lot less than people think they do.

Autism does not lend itself to a neat, linear model. Hell, autism doesn’t lend itself to a neat anything. People often ask me where Brooke “falls on the autism spectrum”. I understand that the question is born of a false but comforting perception that there is some kind of skill vs challenge hierarchy – a pretty, brightly colored pyramid perhaps – upon which we can place equally brightly colored thumbtacks to denote ranking of severity and prominence of gifts.

Of course pretty colored pyramids are useless (unless it’s 1978 and we’re discussing food. ) We’re not talking about food. We’re talking about living, breathing, constantly evolving, delightfully complex human beings.

So I guess the question is – as it always is – what do we do?

Well, I’d say that as with most things, we attack the problem from both sides. We work on changing the language that reinforces the bifurcated model of autism (not using it is a great way to start) and at the same time we educate the general public on why support and accommodation are vital across (around?) the spectrum. Changing language is a process. It’s not a quick fix. Ever. So we need another strategy – something that we can do concurrently to ensure that while folks continue to give into the natural tendency to categorize, no one winds up out in the cold.

In 2009, I wrote a post called Brooke Order. In that post, I said the following. I apologize that it largely repeats what I’ve said above, but I’m loathe to hack it up.

… but damn it all, here was my kid playing. And playing BIG. This was elaborate, dramatic, pretend play. Characters interacting with one another as part of a grand scene. Voices! Different, distinct, appropriate voices for each character! A sentence ran through my head.

She’s catching up!

Followed by another one.

“This is a disorder, Jess. Not a delay.”

And another.

“Her development will not ‘catch up’, per se; it will simply happen in a different order.”

[Those words were spoken by the] first specialist we ever saw. The speech therapist who directed us to the autism clinic – Do not pass Go, she had said. Do not collect $200. Just get help. The one who spent twenty minutes with our baby and knew. Just knew. And she was right about so many things. Not a delay; a disorder. A different order.

I’ve come to dislike dis-order. I prefer Brooke-order. She shows us time and again that she will come to it, whatever ‘it’ is when she is good and ready. I guess our humble job is simply to make sure she’s armed and ready when that time comes.

In response to comments on that post, I wrote the following:

you know, this whole idea of breaking apart the ‘delay’ model meant a much bigger paradigm shift for me. when those words sunk in (they were in response to my ignorant question, ‘so when will her speech catch up’?’) they changed the whole visual for me. they did away with the entire idea of linear development. so, to my mind – there is no finish line. there are no lines at all.

people often ask me which ‘end of the spectrum’ brooke is on. i try to explain that to me, the spectrum is more of a three-dimensional sphere. some people have skills A thru D and challenges F thru L. some have strengths M, J and Q and some have deficits P, R and V. it’s round, it’s malleable, it’s unpredictable. and so it is with development.

i picture skills and tools and milestones all mixed together inside the globe. when they’re ready, armed with whatever tools we can give them from the outside our kids will grab them and make them their own. by definition, though, the globe has no ‘end’ – no finish line as it were. but i think in some ways, that’s the way it should be. hell, i’d hate to think that any of us was ‘done’ developing. i’m sure not and i’m 28. (or not)

I guess the point of all of this for me is that we need to ensure that society at large understands that just because an autistic individual has a certain set of abilities it can never be automatically assumed that they have others. Perception of competence in one area can not negate the reality that there may be serious challenges in others.

Conversely, and no less importantly, it can never be assumed that because an individual has certain challenges, they don’t also have myriad strengths and abilities. (When in doubt, click HERE.)

People who are severely impacted by autism need and deserve our support. They face unfathomable challenges and misconceptions about who they are and what they can do every day.

People who may appear to be more mildly impacted by autism need and deserve our support. They face unfathomable challenges and misconceptions about who they are and what they can do every day.

And just because it may be easier for those of us looking from the outside in to build pretty, brightly colored pyramids upon which to categorize them, it’s no longer 1978 and we’re not talking about food.

~

23 thoughts on “pretty pyramids

  1. Exactly. My boys have the same diagnosis but have completely different strengths and challenges and need different supports. They don’t fit into some pre- conceived category.
    Thank you for this excellent metaphor that so many can understand. The outdated food pyramid example is perfect.

  2. I am so confused on how I feel about everything lately… My son was diagnosed at 3 as having pdd he was very “delayed” they told me… He received so much early intervention and for that I am eternally grateful. He is now, as I have been told to call it, a High functioning Autistic child OR child with moderate Asperger’s Syndrome… He lost all of his services in the Los Angeles (Burbank actually) school district but they would not mainstream him… so I pulled him out of the public school system and tried private school… two different ones in fact… in which I would run around to all the teachers and principals and exclaim: he has Asperger’s BUT he’s high functioning… And my heart would ache because I see all that he struggles with, I see how much help he needs… and yet, here I am with a “high functioning” child and I feel so guilty because, how can I feel upset and so overpowered by this mystery of what’s going on inside my child’s head that I can’t understand – when there are so many more children out there much more “low functioning” than him. Shouldn’t I be “grateful” for that? What a mindf%*k! …. Last year, I moved out of L.A. to New York where the school system is so much better, he does have an IEP again and he’s getting amazing support…. and for THAT I am grateful. This post touches on those feelings. I’m still so confused about what I should say, how I should say it… Everything I was told to say, I clung to it and spouted it out but it never felt true, I felt like I was betraying everything I felt.. but I’m not more clear about it now either… I guess that’s what this is… I guess as much as society wants us to roll it up in a little ball so they can understand, it just can’t be done… As always, thanks Jess, I think I’m going to stop shouting out my disclaimer in the subtext: “we have autism BUT it’s not that bad…” No. That doesn’t sum it at all.

    • This is where I am too. I have a high functioning, Asperger’s, PDD-NOS boy. He’s got every diagnosis! Because he can talk and, well, function pretty well, the teachers seem to think he can process more than he can, then they are surprised when he blows up. We had a doctor go in to help with behavior and she summed it up… she said “they just don’t get it.” I’m fearful no one will ever get it and these kids grow up and without the right support, what kind of future is there??

      • YES, YES, YES! as to the reality of teachers who think our children can consistently process more than the can. And, don’t we all really want to believe that they’re right, so we, maybe, don’t really, forcefully challenge this? This last school year, my husband and I got called to the school because our daughter, who has acted on a harmful tendency, had hit her teacher. The school wanted us to know that, while they wouldn’t suspend her ‘this time,’ if it happened again, they would have to take action. What happened was that my daughter got very frustrated and told her teacher and para that she was getting mad and needed a ‘time out.’. The supposed professionals decided that she needed to learn to self-soothe in the classroom, so 20 minutes later, my daughter is a screaming, crying bundle of nerves, who screams that she is going to hit something. And, she does. For me, this is huge. My daughter has told them exactly what she is feeling and what she needs. And, they think she should give them more. I will wrap up by saying that, after my response, there was no more talk about a suspension, and I got a call from the district’s lawyer. (I am a lawyer, myself, so it was an expected conversation.). I will further say, however, that I am not optimistic that anything will change this upcoming school year.

  3. I regret to say that I have been one who has used these descriptors. But, what you are saying makes perfect sense. If I quit describing my daughter as “high functioning,” will I make it easier for her school to understand that she does need support? I, actually, had one teacher tell me that I wasn’t doing my daughter any favors by insisting on compliance with her IEP, “because she was completely capable of working like the other children”. That’s the thing. She may seem to need no support, until the one thing goes wrong and completely upends her world. And, every flipping time this happens, the school has pulled her para from her “because she didn’t seem to need the support”. Maybe if I change the way I communicate about my daughter, I can get the school to change the way it perceives my daughter’s needs.

  4. When people ask me how badly my son is affected I never know what to say. The truth is, in some ways, he is not affected at all by many things that most other autistic people seem to struggle with. But he certainly has severe communication issues so where does that leave us?

  5. I really like the “Brooke-order” language that you use in this post — and the definition of disorder as ” a different kind of order.” They’re such positive ways of looking at things and they go miles to remind me that my own Little Miss will hit things at her pace. Thank you!

  6. But sometimes it’s so much easier to explain it that way. Especially when you know someone won’t get it and you are tired of explaining it. I agree about educating people, but sometimes, I don’t have the time or energy to get int the discussion with others that I know I am wasting my time with.

  7. I haven’t been around very long…so I appreciated your flashback post. I love how you described the skills, tools, and milestones like a mixed up Globe. Such a fantastic metaphor! I could see so many teachers/therapists benefiting from this metaphor. They get so caught up in the high/low functioning and the special ed. terminology that they lose sight of who these kids really are. A metaphor like this could really open their eyes and push them to assist the child to reach their full potential of awesomeness!

  8. I love the “Brooke-order”. We often say our son is on “Tate-time”. He has his way…it’s HIS order, his schedule..it is different than other children. He has skills and abilities…and some challenges and frustrations, too. Because it’s a spectrum, he has a little from column A, a few from column B, a smattering in column C…etc, etc, etc….

    Well written post, Jess.

  9. It seems that, in the eyes of the world, if a child can talk and respond to what is said, they are “high functioning.” That is where we are. Oh, for the language to be able to explain – and to understand! Thanks for the start, Jess.

  10. So true! Thank you for writing this. People who see my daughter at her best assume she doesn’t need any help, accomodations or services. People who see her at her worst assume she doesn’t have abilities that she developed long ago. The truth is in between, but to confuse it even more she will go through some periods where she does pretty well adjusting to her surroundings on her own and others (like when her world changes) where she can barely function.

  11. You are brillant! I think its like a rubiks cube sometimes. All rubiks cubes are square but think of the possibilities!
    I truly love how your mother is always the first person to post with words of encouragement and support. The trail of love and family support continues.

  12. “I guess the point of all of this for me is that we need to ensure that society at large understands that just because an autistic individual has a certain set of abilities it can never be automatically assumed that they have others. Perception of competence in one area can not negate the reality that there may be serious challenges in others.”. THIS IS IT. mail this to every school district. Put it in the newspaper. Shout it from the rooftops. THIS IS IT!

  13. Wow Jess. I’m sure you must get a little tired of hearing “You’ve written just what I needed, at just the right time”. But this is so perfect.

    I have two littles on this spherical spectrum. My oldest, with the vocab of a 10 year old at 4, appears to need a lot less support than his little sis, nearly 3, who rarely uses a novel sentence and has certainly never uttered a “W” question, even “Where”. But who could get by with little to no support? Little sis. She’s not going to hurt anyone, she’s unlikely to melt down. But big brother, with all his language (and a “gifted” amount of it) could not explain why he is hitting or kicking or biting (insert person nearest).

    I love this. Us Westerners with our penchant for lines, linear end points, and finish lines could take a page from Indigenous cultures, who see life, people and progress in a much more circular way.

  14. Sometimes I wonder if it’s a matter of one language in the autism community and one other language when dealing with the common public. Honestly, when I tell some people Hunter has autism, all they think is Rainman (yes, still even now) or maybe Temple Grandin (if they are more aware), but they don’t understand what Hunter’s autism is until I use words like low-functioning, non-verbal (which I don’t like either because he is verbal but not necessarily understandable and only limited to wants and needs). Labels suck, but they do help the unknowledgeable better understand. I also like how one of his early aides put autism.. it’s like a smorgasbord and every kid takes a little something different from every area.

  15. wow, eye-opener today, it was actually easier to get services when my son was ‘lower’ functioning but he needed a different kind of support in high school when the social pressure kept him out of the content mastery center because ‘it wasn’t cool’. linear thinking just doesn’t work.

  16. When my son was first diagnosed, I clung to the “high-functioning” qualifier. When I said he had autism, it felt like exposing all his challenges. When I added the high-functioning descriptor, I felt like somehow I was reminding others of his strengths. I understand the problems with the terms, but I still wish people could see my son as a whole child.

  17. I’m going to start using the term “Becca-order” for my daughter because you’re right, she does things in her own time and order.

  18. Pingback: High-Functioning Autism | Queen in Crazy Town

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