Descriptions versus Labels

I wrote a post about how my 13-year-old son living with autism identifies himself as “autistic”.  He likes being autistic.  I both love that he feels this way, and at the same time, have some uncomfortableness with it.  This post is sorting through why I feel unsure of his label of “autistic.”

I think what surprises me the most is that none of my children until Alex has identified with a “label” before. They don’t call themselves homeschoolers or unschoolers; they are homeschooling or living life, in their perspective.

They are not right-brained learners or creative learners or visual learners; they simply “like Legos” or drawing or ceiling fans or trucks.

They are not autistic or ADD or dyslexic; they simply can identify their strengths and weaknesses.

So, to have a child identify with a label, “autistic”, is different.  I think I have steered away from “labels” because they are confining.  Someone said, “Once you define it; it can confine you.”  I talked about that here before.

Labels carry societal connotations.  Most “disability labels” carry a negative, needy, or “less than” perspective with it.  I will listen to people who work hard at helping their child with dyslexia, for example, take pride in it.  The problem with that is two-fold for me.  First of all, anyone who hears a label brings their own life experiences, beliefs and perspectives as they process the label and subsequently categorize it.  Our brains are meant to categorize based on these criteria.  Naturally, I know new connotations cannot develop without steps from those living it in creating the new reality.  However, that leads to the second problem:  Some labels are not as they seem.  Taking the dyslexia label, I believe this “difficulty” was created by our inaccurate perception of the needs of these learners.  There would be little to no “dyslexia” if we pursued the education of the right-brained learner in a way that works best for them.  So, the label “dyslexia” or “autism” is only as accurate as we understand today.  That’s limiting, in my opinion.

That leads to why I chose a particular path in raising my children.  It was always important to me to have my children view themselves holistically, which more means to recognize their natural states of progression than to define the whole in a finished (and thus limited) way.  By using DESCRIPTIVES versus LABELS, it simply identifies a small part of knowledge gleaned from where we currently are on our journey already traveled while recognizing there is information yet to be gathered from the journey still to be traveled.  Thus, DESCRIPTIVES are dynamic . . . changing as the person does.  DESCRIPTIVES also tend to have positive connotations because they often describe character traits:  persistent, creative, flexible, compassionate, hard-working, goal-driven, spontaneous, etc.

On the flip side, when DESCRIPTIVES are used to explain weak areas, it tends to carry the idea that one knows themselves and it shares preferences.  Also, there is an opposite positive description.  I prefer hands-on and visual information to auditory.  I work best alone than in groups.  I find that I can work in a noisy environment if I use my iPod.

LABELS seem to paint large strokes that may not always be accurate.   With the word “autistic”, there is a continuum of possibilities to what that means.  I believe each of my five birth children have fallen somewhere on the spectrum of autism; but they are SO different from one another!  One word cannot begin to describe each person’s individuality.  So, by using that label, how does it help someone know you better?  A young woman at our church first introduced herself to the single young adults as “having Asperger’s.”  My daughter has befriended her not because of Asperger’s, but because she could tell she wanted a friend.  As their friendship has tried to blossom, the label “Asperger’s” keeps interfering.  “I want a job, but I have Asperger’s.”  “It’s hard living with Asperger’s.”  Abbey tries to ask her questions about her interests and such, but it seems to keep going back to Asperger’s.  Is this being comforable with Asperger’s, or is this being confined by it?

I love that Alex embraces his autistic traits.  He loves that he engages in his interests to a deeper level than most and a longer timeframe.  But, he could love his passion, his meticulous curiosity, and his love of learning that is more descriptive to what he loves than being “autistic” does.  Now, I am a person of balance.  I recognize the benefit of labels for ease of identification of likenesses.  I use the word unschooling, autism, right-brained learner, as some identifiers to meet others who will enjoy conversations, interactions, and sharing discoveries in a similar vein as myself.  Feeling good about oneself and all the parts that make up myself as I understand it today is important, including living with autism.  I don’t tend to throw out the baby with the bathwater in these instances.  I recognize what is good about Alex’s self identification because it is his life experiences and perspective that led to it.  I also embrace my perspective toward descriptions as my preferred mode of identification and can continue to utilize that genre even as each child chooses their own model of self-identification.  It’s all good in its own way.

6 responses to “Descriptions versus Labels

  1. Great post Cindy!

  2. Actually comparing how that girl with Aspergers uses the label and how Alex uses it (from your previous post), I can see a huge difference. She is using it as a crutch –” I want to do x but I can’t because I have…” Alex is saying “I am autistic. I like it because…” and then he identifies his strengths. That girl has probably not been raised by people who think that Aspergers is about strengths. It is about DISability. But as many in the disability movement have pointed out, the focus should be on the abilities. And the disability almost always comes from society not the individual.

    So, for example, if you can’t walk, what difference does it make. You can do so many other things, and with some assistance (like a wheel chair) you can get around. The impediments to your mobility don’t come from you, they come from the built environment that assumes everyone can walk and climb stairs.

    Similarly, there are probably lots of things Alex can’t do. So what. there are lots of things you and I can’t do. But he is focusing on what he can do and, more importantly, what he can do really well. That gives him a positive outlook.

    That other girl is looking at Aspergers as a bunch of things she can’t do. And she probably doesn’t have a clue where to start figuring out what she can do. That’s not pride.

  3. I do a lot of work with literacy and numeracy for those who have Autism or Aspergers. I come for the approach that they are too fast, too intelligent for the English language and this is about slowing down their visual skills to spot all the ‘mistakes and irregularities’ in the English language.

    The word ‘education’ comes from a root that means to ‘draw out’.
    Education starts from the idea of developing the mind.

    So many children, and adults, who have difficulties with the English language, and/or numbers can simply be running mental processes too fast. Imagine your visual skills are like a fast car travelling at 100mph. Great on a straight road. However, when you come to the town centre of reading, writing and spelling, you need to slow down your car, or visual skills, to avoid crashing.

    At 100mph you can see words that have pictures associated with them such as nouns. Words like cat, dog and balloon evoke a picture in your imagination when they are read.

    But there are also ‘invisible words’ which have no picture associated with them and you can speed right past. Words like should, would, could, but, and, if, of, what, where, when, how why – conjunctions, prepositions, questions and so on.

    Suddenly spelling, reading and comprehension can become a nightmare.

    And this is just one of several things that may be going on. There are more. VISIT http://www.seeingspellsachieving.org/client-view/

    ANDREW BENDEFY is co -’author and founder’ of Seeing Spells Achieving. He works to improve and overcome dyslexia and literacy challenges including those with ADD, ADHD, ASPERGERS, AUTISM, OCD, DOWNS, TOURETTES, APD. He runs trainings for parents and health professionals, teachers and schools, community programs and 1-1 work.

  4. Jove,

    You’re right! Alex is still viewing things through a strengths/weakness type of paradigm, and simply utilizing the label “autistic” to represent his views on his strengths. He certainly does identify what about his autism are strengths and what he likes, so my preference in how I interacted with my children through descriptions is still the foundation. He just chose the label to represent it as a whole. Good stuff!

    And, you’re right. It almost seems like the girl uses the label to not only describe her situation as weakness, but she doesn’t seem to be able to describe what about this view specifically creates the weakness. For instance, she doesn’t seem to be able to verbalize that “x weakness prevents me from being able to get a job.” She generally brushes the label “Aspergers prevents me from being able to get a job.” But, many Asperger’s people have jobs, so there must be something specific that is hindering her ability to get a job. The skill involved may stem from a typical Asperger’s difficulty or trait, but it doesn’t have to be what prohibits reaching your goals, because as you mention, there are other ways to reach the same place when you view what you CAN do, because there are always things that we can’t do well or sometimes at all, but there are always solutions if we look hard enough.

    Thanks for all your great comments!
    Cindy

  5. Great article! We deal with this with our children concerning their dyslexia. While we don’t deal with autism, we have a couple friends dealing with autistic children. We do have a website that provides information, resources and support for dyslexia at http://www.causesofdyslexia.com please check it out if you are dealing with dyslexia.

  6. Chris,

    I think you have to reread my part about dyslexia:

    “Taking the dyslexia label, I believe this “difficulty” was created by our inaccurate perception of the needs of these learners. There would be little to no “dyslexia” if we pursued the education of the right-brained learner in a way that works best for them. So, the label “dyslexia” or “autism” is only as accurate as we understand today.”

    I am a HUGE proponent for the right-brained learning style. Dyslexia is only seen, basically, in this learning style. It’s because the timeframe for a right-brained learner to come to reading is between 8-10 years old, which is at odds with our public institutions of teaching. Their brains are naturally wired before this to view things three-dimensionally. Some of the right-brained learners, when pushed into early reading, math, spelling, writing, etc., before their brain naturally shifts to take in two-dimensional work between 8-10 years old, develop “problems”; thus, “dyslexia” was born. Places like Sweden, who don’t teach reading until 7-8 years old, have hardly any dyslexia labels.

    This is why I think it is a huge disservice to help a child “embrace dyslexia” for example, because dyslexia doesn’t usually have to exist. It’s created by man, and by embracing the label, one embraces man’s current misperceptions and misinformation.

    The label “autism” was created to describe a set of symptoms. And those set of symptoms were considered “bad” or a “problem”. Though I have a child labeled with autism who has considerable sensory differences that create significant difficulties for him, I won’t look at him as “bad” for dealing with it. And I help him figure out how to have more choices in his life by developing skills, strategies and biochemical/biomedical interactions that work best for him. For my children who are more high functioning, they have even more choices in developing their perspectives on their abilities and weaknesses. Thus, why I prefer descriptions over labels.

    But, again, I don’t throw out the baby with the bathwater and recognize the benefit of labels in gathering information and learning about our differences. But, I prefer right-brained learner, or creative learner, over dyslexia, because right-brained learner shares the holistic nature of the gifts and difficulties of a learner, while dyslexia focuses on the negative as well as the factor of misinformation in the first place.

    Some thoughts on this topic . . .
    -Cindy