5/22/2014

An Open Letter to Jeffrey Howe

Dear Jeffrey Howe,
I read your piece today in Motherlode.  I wanted to comment and speak to you directly, but didn't have an account on the site, so I will write to you here and hope my readers here and on Twitter will share it with you.

I am the older sister of a young man who was diagnosed on the spectrum as a child and has not lost the diagnosis. I am also a cognitive neuroscience researcher in training, and hope to study people on the autism spectrum in the future.

I was pleased to see you listened to the autistic adults who wrote to you--people who share some experiences with your son, and who, if all goes well, he might even resemble some day.  Not all parents are willing to do this.  It's not easy to hear that you might inadvertently be doing something that might hurt your child, and embarrassing to realize that you didn't imagine autistic people might read what you wrote.  But you listened and acknowledged these mistakes, and that takes empathy and integrity.

But I was disappointed with where you ended up.  You said:
"In the same way I hope that the other patrons at our local diner will accept the child doing a headstand in our booth, I hope that autism advocates accept that we require every meager word at our disposal to describe our unique experiences...Let us accept words for the blunt, imperfect tools that they are."*
First of all, please understand: you can write about your child's difficulties, and the effort and expense of raising him, without saying things that autistic readers find dehumanizing and hurtful.  You've already done it, in fact.  You said:

"Last year Finn climbed out his bedroom window, falling two and a half stories, breaking his pelvis and fracturing two vertebrae. He had pushed his stuffed animals out the window, and lacking any understanding of gravity or height, he simply wanted to join them in our yard... 
He used to point to an object he desired, his one concrete method of communication. Now he uses American Sign Language for music and movie and dog and shoe and food and drink and up and help and stop and wait and candy. He is beginning to shake his head for no and nod for yes, and when I look into his eyes I see now that he loves us as fiercely as we love him. He only rarely bites us anymore, or wraps an angry hand around his sister's hair."
A very evocative description of Finn at two points in his life, and no offensive language in sight.

The thing about labels like, yes, "low functioning," is that they are not only hurtful but vague.  What does a low functioning person look like?  A non-speaking child who is constantly hugging, smiling at, and initiating interactions with their parents could be called low-functioning.  So might a child who can speak but has frequent meltdowns, or whose independent living skills are so poor they cannot be safely left alone for long and cannot cross the street unaided.  A child with low IQ might be called low-functioning, but so might an average-IQ child who simply cannot fit into a mainstream classroom or who has all the DSM autism traits to an extreme degree.  Wouldn't it be better to describe what your child is actually like, what he can do and can't do right now--as you've started to do here?  Wouldn't that better achieve your goal of describing what life with him is like?

I should also note that not all the negative words you've singled out ("nonverbal," "impaired," and "low functioning") are all harmful, so your palette is less limited than you may have feared. For example, I've yet to hear anyone object to "nonverbal," which is a simple statement of fact--that a person cannot speak.

Suppose, though, that hurtful labels actually were a sufficiently precise way to describe life with your child.  I still don't think achieving this description is worth the pain it would cause.  Let's compare the costs and benefits.

If you use the language you like, you will be happy at expressing how you feel, and some of your parent readers will feel validated and cheered.  On the other hand, you will have, unwittingly, reinforced views of autistic people that, when acted on, cause a lot of pain.  More directly, any autistic people reading will wince, feel hurt and angry at best and outright traumatized at worst.  Many have some very painful histories with terms you use such as "low-functioning."  They have experienced abuse from therapists and even parents, have been treated as if they weren't "really there," and sometimes been in institutions.  When people deemed "low-functioning" go out in public, others address their nonautistic companions instead of them, or talk about them in front of them as if they weren't really there.  People deemed low-functioning are denied a complete education.  And if they are deemed too "severe" or "low functioning" by too many people, they may get sent to centers of last resort, like the JRC, where they are electro-shocked into submission.

Saying someone is "unable to communicate" or "in their own world" probably doesn't lead to as much outright abuse as "low functioning."  But here's the thing--people unable to speak, with limited gestures, still do try to communicate, through the only means available to them--behavior, such as flopping down in the middle of the floor, or flapping their hands, or biting themselves, or even just screaming.  Not the ideal communication method, we can all agree--but how often do parents, clinicians, or teachers attempt to interpret the meaning of this behavior, and how often do they simply call it a behavior problem and attempt to squash it?  These severely disabled kids, thus, are the ones who are most hurt by words like "unable to communicate," not "quirky Intel programmers."  And people who seem "unable to communicate" don't just communicate through challenging behavior, either.  They communicate through touch--they lead parents to something they want to show them; they gently touch their parents to comfort them.  Lacking the ability to create sentences of their own, they communicate using other people's words--what researchers call "echolalia."  Maybe there are a few people utterly unable to communicate, maybe your child is even one of them, but I would bet that most kids whose parents describe them as unable to communicate are, in fact, trying to communicate, but their atypical signals are being misunderstood or ignored.  I suppose eventually, such kids might give up as they get older and realize they won't be understood, but that's not everyone.  And while autistic kids are often focused on very different things than we are--the toys they're lining up, or the sensory stimuli or special interests that absorb their attention to the exclusion of all else--that doesn't mean they're "in their own world."  In fact, it's dangerous to assume autistic kids are "in their own world" because it's just a step from there to "they're not aware of anything that's going on" and from there, only a step to "it doesn't matter what we do or say to them, because they won't care anyway," and that's when teachers and therapists and others start to abuse.  And if we think autistic kids are "stuck" in their own world, how much effort will we make to integrate them into our schools or public places?  Autistic kids live in the same world we do, however differently they may perceive it.

So if you use words like "low functioning" or "unable to communicate" or "stuck in his own world," you could hurt any autistic people who may be reading, while contributing to the assumptions that make people abuse them and excuse that abuse.  On the other hand, you could please some parent readers in need of validation.  On any reasonable cost-benefit analysis, using expressions like these just isn't worth it, even if they were useful. 

I wish that language were as neutral and unimportant as you make it out to be when you say you hope "that autism advocates will accept that we require every meager word at our disposal to describe our unique experiences...it comes down to tolerance."  You may have noticed that as a parent, most people in the general public see you as an authority on autism.  They may even see you as more of an authority, and listen to you more attentively, than they would an autistic person.  This power to shape opinions means, unfortunately, that every word you say carries immense weight.  You have the power to create a more hospitable world for people with your son's diagnosis--or reinforce the same prejudices that currently make life harder for them.  Look at it this way: your son already carries a burden other children do not, because of his disability.  Does he need to carry an additional burden of stigma and the presumption of incompetence from everyone around him?  It may be hard to lighten the burden of the disability, so it becomes all the more important to ease the burden of stigma.  I have heard calls to stop disagreeing about words in the interests of "unity," but "unity" should not come at the expense of those who are most disabled, and do not have the words yet to speak out against what hurts them.

Lastly, please understand that however "abstract" the distinction between disability and disease may seem for you, this is because you yourself do not have autism and can afford to ignore the issue.  Autistic people do not have that luxury, which is why those who can write and blog discuss the issue so much.  It directly affects their lives and their self-worth.  And from a practical perspective, there is a huge difference between therapy that attempts to make a child look exactly like his peers and therapy that doesn't worry about appearances, aiming only to teach skills.  There's an even bigger gulf between therapy that teaches children to achieve better results with the brain they have and therapy that attempts the impossible task of turning their brain into a very different type of brain.  Dismissing this issue as unimportant would be myopic and unwise.

I hope Finn continues to grow and learn to communicate better, and that his and your lives get easier.  I also hope that he will never feel wounded by what you have said or written about him.

You may also enjoy reading books written by nonspeaking autistic young people.  You might want to start with "The Reason I Jump" by Naoki Higashida, who uses a question-answer format to address questions people often have about what it's like to be him and why he behaves the way he does. "I Am Intelligent," by Peyton Goddard, is a harder and more upsetting read, but worth it, I think.  I personally wasn't crazy about Tito Mukhopadyay's style in "How Can I Talk if My Lips Don't Move?" but it brings his very different perceptual world to life like nothing else, and you'd probably enjoy seeing how his mother, Soma Mukhopadyay, taught him.  My favorite, though, is "Ido in Autismland: Climbing Out of Autism's Silent Prison" by Ido Kedar.  It's telling, I think, that he characterizes his autism as a prison and still seems more hurt by the way others treated him and denied him an education. All are very different from each other and probably from your son, but they offer an amazing glimpse into the world of people who were called "low functioning" and "unable to communicate," and offer a basis for hope and faith.

*By the way, this is a false analogy.  The worse damage Finn's headstand can do to other restaurant patrons, on the single occasion where they see him, is a bit of distraction or annoyance.  Whereas the worst damage certain words by parents can do involves eliciting traumatizing memories of abuse and reinforcing the exact prejudicial attitudes that caused that abuse in the first place.