Category Archives: functioning labels

Emma Shines a Light on Functioning Labels

“People think I am troubled and can’t decide whether I am low functioning or can’t make sense of the words I say, but either way they are wrong.  So whatever label I am given it is meaningless.  Neither one assumes my intelligence.  This confuses many.  What does a functioning label do for the person it supposedly describes?

“I can’t talk the way I think.  Where is the label for that?

“Why am I punished with a label that only detracts and doesn’t tell the truth about me?”

Earlier this year Emma wrote (from Emma Discusses Functioning Labels):

“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 non-autistic people 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.”

2010 in Colorado

2010 in Colorado

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”

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…

But What About Alex?

Another Autistic child has died… stabbed… multiple times, in the chest, by his mother. Alex Spourdalakis was 14 years old.

The mother of a 14-year-old with severe autism who was found stabbed to death…” ~ Daily Herald.com

But what about Alex?

The mother of a 14-year-old with severe autism…” ~ Pantagraph.com

But what about Alex?

First degree murder charges have been filed against Dorothy Spourdalakis, the mother of a teen with severe autism…” ~ abclocal.go.com

But what about Alex?

A young man. Stabbed. Not once. Multiple times.

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the Pursuit of happiness.” The United States Declaration of Independence – 1776

But what about Alex?

In the 237 years since those words were first written we have failed miserably at putting this idea into practice. All human life is not treated as equal; apparently it is not “self-evident”. We continue to live in a world where equality is still desperately sought by a great many.

For those who are born unable to speak and Autistic, those among us, who are given the label “severe”, their lives matter even less. We not only think of ourselves, (those of us who are able to speak and whose neurology is not Autistic) as superior, our lives deemed more worthwhile, but we are reminded of our superiority every single day of our existence, just as those who are born unlike us are told in myriad ways how they are not.

Autistic people, particularly those with multiple physical challenges, are spoken of as “burdens” to society, they are talked about as though none who are Autistic are capable of understanding the words being used to describe them. They are not consulted. They are not listened to. For the most part they are being ignored. And those who are raising their voices in protest, who dare to speak out against the crimes committed against them, they are met with resistance, anger, indignation. They are often ridiculed, dismissed, silenced or simply ignored.

When a parent murders their child, we cringe in horror. When that child is disabled we sympathize. The media brings in psychologists to help us understand. We dissect the child’s history, we look for clues, what could have provoked a parent to do such a thing? Sometimes we conclude the parent was crazy and unfit, but not before we make sure there was nothing unusual about the child. As we rally around, trying to distance or identify with the parent, Alex and those like him are all but forgotten. His life is seen as an example of what some must endure. His life becomes an illustration of that burden on society that everyone wishes would just go away.

But what about Alex?

What about what Alex had to endure? What about what it must have been like to live his life for those 14 years? Where are the news articles discussing who this young man was? What did he love? What were his passions? What made him happy? What must it be like to not be able to speak? Did he communicate through typing?  Did he read and write and if so what did he like to read?   What was his favorite subject?  Did he love music?   Did he like animals?  Was there something special he enjoyed doing?

What about Alex?

Alex

 

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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Related Posts:

Wretches and Jabberers – Defying Labels

A few months ago, my friend Ib, gently encouraged me to watch the documentary Wretches and Jabberers.  It’s available on Netflix and iTunes.  I was traveling at the time, Richard was in Colorado, I was in NYC.  In addition I can’t be bothered with the four different remote controls required to watch anything on our TV, let alone find a specific movie, put it in the queue, figure out which remote(s) to use, download the movie and watch it.  Yeah.  I know.  When I see a TV, anywhere (unless it’s already turned on) I automatically walk away.  It’s like a Pavlovian response at this point.  If I’m home alone or just with Em, the TV screen stays dark.  And I’m totally f*cked if Em wants to watch something and presses the wrong button by mistake.  My 12-year-old son, Nic, has been known to pat me on the head and say in condescending tones, “Aw… Mommy.  It’s okay.  Let me help you with that.”  Really.  This has actually happened.  Several times.   So, yes, it took me awhile before I finally was able to watch Wretches and Jabberers with Richard on Netflix.  I cried.  I laughed.  Wow, what a documentary!  I’ll wait here while you go to the above link and put it in your queue.

Larry Bissonnette and Tracy Thresher are predominantly nonverbal Autistics.  Larry is a painter, lives with his sister and was institutionalized as a child.  He hits himself in the head when frustrated.  He is echolaic.  Tracy is homeless. *Please read Tracy’s mom’s comment on this comment thread as my statement is incorrect.*   In the documentary he has places he is able to go for a few nights here and there, but nowhere he calls “home”.  Both Larry and Tracy communicate through facilitators by typing.  The documentary follows them as they travel all over the world meeting other nonverbal Autistics.  The film defies the accepted and common neurotypical views and assumptions about Autism and what it means to be Autistic.  Powerful, funny, poignant, it is essential viewing for all human beings, not just those interested in Autism, because it rattles our unexamined biases, our beliefs, our perceptions and everything we are being “told” about autism.

A terrific discussion took place in the comments on yesterday’s post.  The whole issue of mentorship and hf/lf (high functioning / low functioning) was brought up.  One person mentioned how “our functioning level should be based on how we treat our fellow humans not whether someone judges another’s way of communicating or perceiving the world as correct, or less or greater than another’s.”  Her remarks made me think about the neurotypical world.  What if each of us were given a functioning label?  What if our lives, our abilities were reduced to a set list of priorities.  Let’s say each of us was given a “critique” of our ability to meet that criteria?

If I was put under a similar magnifying glass as Autistics, it could be argued (of course all of this is subjective and that’s the point) I would fall into the moderately functioning category for neurotypicals depending on the set of agreed upon priorities.  I do not hold any position of power.  I write a blog for which I earn not a single cent.  I publish occasionally on the Huffington Post, again, I am not “employed” by them, I submit pieces, they publish them, no money is paid for those pieces.  I am mother to my two children, I do my best to care for them, but I do not “make money” for the privilege of having two children.  I have my own business, I make a decent living (for a great many years I did not and barely was able to pay my rent.)

I flounder in the face of tests.  I score poorly on most of them unless I have taken the time to study the material to ensure I am able to breeze through and even then I tend to make mistakes.  I freeze up when I feel nervous or stressed.  My vocabulary can be spotty, particularly when in stressful situations, I go off on tangents, I have difficulty writing a standard 5 paragraph essay.  I shut down completely in the face of mathematical word problems.  I use lots of adverbs, sometimes I change tenses in the middle of a sentence.  Sometimes it’s hard for me to stay on track.  I’m terrible at most cocktail parties.  My interest in cocktail conversation wanes after the first 5 minutes.  I have a passing interest in the weather, a favorite topic at such events.  I have special interests that I can go on and on and on about.  I cannot remember people’s names.  I’m marginally versed in social networking.  I dislike most TV.  I cannot stand any show with the word “housewives” in it.  I am extremely sensitive.  I make social faux pas (what is the plural of faux pas?) often.  I am not patient.  I am a terrible liar.  The list goes on and on.

We neurotypicals are not held to the same scrutiny our Autistic brothers and sisters are held to though.  We don’t have to worry that we will be slapped with a functioning label, which will be prominently placed on our resumes.  But what if we were?  I doubt we’d sit passively, without resistance and “accept” this kind of limited categorization.  I think many of us would protest vehemently.  I think many of us would rise up, organize protests, argue for our rights as human beings, we would advocate for ourselves, we would fight,  just as gays, African-Americans, Women and now…  Autistics are.

Emma – 2008