Thursday, August 7, 2014

Face the truth: what you REALLY mean when you say "low-functioning"

I'm so freaking tired of people throwing around functioning labels. "High" functioning autism. "Low" functioning autism. "Moderately," "mildly," or "severely" affected by autism.

Aside from the fact that these labels are arbitrary, divisive, imprecise, and inaccurate, they just don't make sense.  As someone (not me) brilliantly stated, "Low functioning means that your strengths are ignored; high functioning means that your deficits are ignored."

There are several GREAT blog posts about functioning levels written by adult Autistics and by parent allies that discuss functioning labels far more eloquently than I, and I encourage you to read them. This post is merely my small contribution on the subject.

And it's going to get real up in here. Let's stop already with the deceptive semantics and just deal with the truth: there IS no "low," "moderate," or "high" functioning autism. There just isn't.  Just as there is no Tooth Fairy.  Just as parents placing money under their children's pillows doesn't magically make those parents transform into the Tooth Fairy, millions of parents and professionals using functioning labels doesn't make those labels legitimate nor accurate.

Technically, there is not and never has been an actual diagnosis called
"low-functioning autism" or "high-functioning autism."  There is and has never been an ICD code for either of those or for anything like them.

Previously, under the DSM-IV TR, there was an ICD-9 for five Pervasive Developmental Disorders: Autistic Disorder, Asperger Syndrome, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Childhood Disintegrative Disorder, and Rhett's Disorder.

Three of these once separate diagnoses have been merged since 2013 under the DSM 5, so there is now an ICD-10 code for a singular diagnosis, Autism Spectrum Disorder.  Again, there is not and has never been anything other than these autism categories. Period.

"But my doctor said Timmy had low-functioning autism!" you cry.  Yes, your doctor very well might have said that. That term, and similar ones have been tossed around for many years, but they're not an actual diagnosis.  They are colloquial terms that doctors, parents, and other professionals use for descriptive purposes similar to how some people in the African American community might be described by their complexion.

Just as the use of functioning levels is just as variable and inaccurate as that is; what's considered "light" or "dark" to one person is not necessarily the same way another person would characterize it.  And just as there's no actual race called "high yellow" or "dark-skinned," there's no "low-functioning" or "high-functioning" autism.

In discussions about treatment, about services, and about "cure," the false dichotomy between the "levels" of autism is ever-present.

The "high-functioning" people are supposedly "draining resources" needed for others - that's IF they're even accepted as truly being autistic and not just "quirky." (Because of course they're "too high-functioning" to understand "what it's REALLY like" to be on the spectrum.

And the "low-functioning" people are "suffering" and their families are supposedly "desperate" for "any" treatment that will help - be it compliance training, questionable biomed, or even the ever-elusive "cure" of the month being peddled by autism's many snake-oil salesmen.

NO, I don't think everyone on the spectrum is the same.  YES, people present differently. That's why it's considered a "spectrum."  There is a phrase that some people use pretty frequently that describes this well: "If you've met one person with autism...you've met one person with autism."  Although in recent years that phrase has unfortunately been used unkindly by some autism parents as a dismissive tactic to silence adult Autistics who are "not like my child," I think the phrase's original intent before it was twisted by others was to acknowledge the heterogeneity of the autism spectrum.

At any rate, if people are honest with themselves, all "low-functioning" really means is someone who is both autistic AND has a lower score on IQ and/or adaptive living skills assessments.  (Additionally, to some it likely also means an autistic person who is primarily nonspeaking.) In other words, "low-functioning" is the presence of an autism diagnosis and intellectual disability (and again, to some, also the characteristic of being a nonspeaking individual).  These are the ONLY differences between those who are "low-functioning" and those who are high-functioning." Nothing else.

This particular post was prompted by something I read this morning in a group.  For the umpteenth time, someone said that we "shouldn't judge" someone who wants a cure for their "low-functioning" child who was "suffering."

Don't get me wrong. I KNOW that co-occurring conditions such as epilepsy, depression, etc can exist. I am an autistic adult and I have co-occurring conditions.  So do my autistic kids. I begrudge NO ONE the right to address problematic symptoms of any type with the appropriate treatment. I am not anti- treatment; like most neurodiversity proponents, I think ethical, helpful treatments are of tremendous importance.  That's not the issue.

The issue is that the parents need to be honest with themselves and with everyone else; it is not the "autism" part that they want a "cure" for.   What they want a cure for is how autism presents when there is also low IQ/intellectual disability.  And again, since the so-called "high-functioning" autistics are supposedly "just quirky" and "not really disabled," then the problem must be with the intellectual disability.  So...what they really want is NOT to have a child who has an intellectual disability.

But no one will EVER say that explicitly because it's not "politically correct" to say that they want a "cure" for intellectual disability. It would be considered discriminatory and disrespectful (as it should).   So even though that is what is MEANT, that is not what is actually said.

Unfortunately, no such "political correctness" exists for autism. With regard to autism, expressing a desire for a cure IS socially acceptable as well as common.  It is not at all unusual to hear autism parents, autism professionals, and even well-known "charitable" autism organizations frequently and openly lamenting about how difficult "dealing with autism" is; how much autism "costs; "how much those on the spectrum are "suffering" and how their families are as well; and how finding the cause and a cure is needed.

Then to illustrate the point, EVERY single symptom, characteristic, and/or behavior a person has then gets lumped under the category of "autism" even when few of the challenges the parents are concerned most about fall under the diagnostic criteria at all.

According to the DSM 5, autism (Autism Spectrum Disorder) is characterized by:

"Persistent deficits in social communication and social interaction across multiple contexts..." and
"Restricted, repetitive patterns of behavior, interests, or activities, currently or by history..."

That is IT.  Period.

It's not epilepsy.  It's not gastro-intestinal distress.  It's not allergies, or anything else.  Though it can exist alongside those things.

And it can (but does not necessarily have to) exist along with intellectual disability.

With regard to intellectual disability, there are many people with it who have careers, spouses, and families.  They have hobbies, interests, goals, talents and friendships.  They add to the diversity of our shared humanity.

They may also have challenges.  Some of these might be as a result of everyday life, some might be due to societal discrimination and stigma, and some might be due to their condition.  Challenges are not unique to the autism spectrum.

Many of the areas of concern that people have about challenges their autistic loved ones face can also be found in other groups, such as those with intellectual disability.  Some people with intellectual disability might "wander."  They might hit themselves and others. They might have communication difficulties and therefore unable to express pain or discomfort with speech (though they are likely expressing it in other means that others around them may be missing). They might have co-occurring health ailments. They might stim and rock frequently, or hum. They might be non-speaking.

And you know what? They should still exist. They are still human.  They still have value.  Period.

One of my children (who is non-autistic) has intellectual disability.

He should exist.
He is human.
He has value.  TONS of it, actually.  He is amazing. 

I know *exactly* what you are talking about when you begrudge the existence of individuals who are "low-functioning" and that you want to "learn the causes" so you can "prevent" people from being born who are going to be "like that."

"Like that." "That" meaning intellectually disabled.  Like millions of people around the world. 

Like my son.

You SAY it's "the autism."

But then you go on to describe something very much unlike autism, but very much like my child and other people who share his diagnosis of intellectual disability. The people you describe almost as if they are less than human because they are different than you.

And that?

That I have a huge, huge freaking problem with.

Stop basing the value of people's lives on minuscule things such as whether or not they speak, how "social" you think they are, their perceived intellect, or other characteristics.

Start looking at what REALLY matters about a person. Their heart. Their character.  Who they truly are in totality. Focus on their strengths. Offer support. Offer love. Build them up.

For God's sake.  For your own sakes. For the sake of the youth, who are our future.


Please.

4 comments:

  1. Great article! I agree with most of it, but I would like to add that some of us who are not intellectual ly disabled (I have a genius IQ) DO stim a lot,etc. I self talk and am sometimes aggressive toward myself and others. I rock and flap with a stimmy toy which I carry everywhere- if I don't mutilate the cuticles around my findernails until they bleed. I just began a sheltered work and, though I can speak, it is not always appropriate or communicative, especially if upset.
    I have very limited tolerance and understanding of people and spend most of my time alone. Never cared for physical relationships and was institutionalized intermittent ly until my late forties.
    Maybe I misunderstood what you said, but it seemed you attributed to most extreme behaviors to only i tellectually impared.
    Not so.
    Thank you.

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    1. AstronAutistic, thank you very much for commenting. You are 100% correct, and I appreciate you pointing this out as I failed to do so. These mannerisms can be present in an individual no matter the IQ, and I did a poor job of indicating that.

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  2. Ugh. My last comment disappeared!
    I am a genius autistic who has extreme behaviors of stereotypy, self mutilation, aggression to self and others, frequent decomps with crying, whining and anxiety, self stimulate nearly constantly and must spend most of my time alone because I cannot handle the stimulation of people. I very much dislike being around people, don't drive, ha e a support person to help me, attend a program for autistic afults and have spend a lot of time in hospitals, restrained.
    My functional behavior is that of a young child, as are many of my emotional responses.
    I may have misunderstood, but it seemed you were saying these more extreme behaviors only occur with subnormal intelligence.
    I am proof they do not.
    Thanks.

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    1. Fortunately your original comment reappeared! (And I commented there, but will do so here as well.) Your point is accurate and well-received; thank you for making mention of this as I can completely understand how it can be perceived that I'd implied that mannerisms perceived as more complex/extreme are not found across the entire autistic spectrum (even though they clearly are). Your comments are greatly appreciated.

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