12/07/2012

Why Assume Autistic People Are Listening?

This post was inspired by a post on The Thinking Person’s Guide to Autism, where Jaden Walker describes a government hearing on the increase in autism diagnoses. An adult with Aspergers, Michael Carley, said something like, “Your sons and daughters with autism can hear what you say about them and read what you write about them.” Before he’d even finished the sentence, Jaden says, several people behind him began violently shaking their heads “no” in disgust. Jaden seemed incredulous. Why would they react this way? Did they really not believe him?

In the comments, a number of parents defended the parents in the audience. Some of these were great examples of the kinds of arguments people make against treating autistic people as if they can understand what you’re saying.  If you look at these arguments closely, the experience behind them is understandable, but the reasoning utterly faulty.

1)  “My child doesn’t have the verbal or intellectual ability to understand what I’m saying, so what I’m saying doesn’t hurt him.”

Some parents think you need high language ability and conceptual competence to be hurt by words like these.  But, in fact, you can be hurt by the emotion behind words even if you don’t fully understand the words themselves.  And of course, there are degrees of understanding.  You may not know the etymology and the whole history of conceptual associations behind words to understand something of their basic meaning—for instance, that it’s bad, and that it’s directed at you.  Think about how the average preschooler picks up the emotions flying around during a divorce, for example.  A young child’s lack of knowledge and verbal ability can lead to misunderstanding, of course—that child might think Mommy and Daddy are fighting because of him.  An autistic child with verbal or intellectual challenges would be even more likely to misunderstand, and think that Mommy and Daddy see him as bad, not his disabilities and their effects on the family.

Frankly, I have no patience with arguments like #1, for ethical reasons. When humans want to abuse someone defenseless—be it an animal, an insane person, an intellectually disabled person, or a child—their excuse will always be “they don’t understand, so it doesn’t hurt them.” If you want to do something cruel (if only for someone’sown good) and you don’t want to feel guilty about it, you claim that it doesn’t really hurt the victim because of their limited capacities. While people certainly have the right to make such claims, I cannot in good conscience let them pass without opposition. Protecting the feelings of such a person is like turning a blind eye to a bully; it only enables them to continue hurting their victims. Speaking of feelings, that leads us into the next argument…

2)  “You’re being mean and condescending to us.”



This is far and away the most common response parents of autistic children make whenever anyone dares suggest something they do could be hurting their child.  It boils down to: “don’t say this because it hurts our feelings.”


Sometimes, parents are reacting to the actual message being said and the (sometimes untactful) way it was delivered.  However, sometimes they read things into people’s comments that were never there in the first place. In past arguments between autistic adults and neurotypical parents of autistic kids, some parents falsely assumed people were saying they didn’t love and care about their children.  This is a red herring: anyone who’s ever dealt with dysfunctional families knows you can love and care about your children and still give them enough material for years on the therapist’s couch.


Of course it hurts people’s feelings to say they might be emotionally scarring their children. People hate hearing bad things agbout themselves, and they react especially violently when the message touches the things most deeply important to them (such as their relationship with their children).  Imagine if someone said this to you. You don’t want to believe your child understands that you’ve called him a curse, a disease, a changeling, because then you’d have to admit you spent years inadvertently hurting your child. That makes you feel like a bad parent, doesn’t it?  You don’t want to be a bad parent, or see yourself as such, so you reject the message and shoot the messenger.


An extremely tempered example of this argument:


“It’s not surprising at all that someone would get upset if they were being stereotyped as a group of individuals not understanding their children’s abilities, or being stereotyped as a group of individuals that say bad things in front of their children. That can come across as very condescending, and be the source of some discontent.”
Some of you will notice that “stereotyping” didn’t actually apply to this case, because Jaden Walker was describing the behavior of specific individuals in a video, not making untrue assumptions about them based on their group membership.  But I digress.



Is this parental reaction understandable?  Of course.  But should Michael Carley, or anyone else, refrain from saying these things out of respect for these parents and their reaction? Definitely not.

What Carley said—in a very tactful way—needs to be said, even if it hurts someone’s feelings.  Because—and I’m sorry if this offends—being told once in a while that you are hurting your children does not hold a candle to being told for years by the people who love you most that you are a curse, a cancer, destroying your family, stupid, incompetent, incapable of understanding or doing anything, diseased, doomed to have a terrible life, a changeling who stole the “real” child, and so on.

3)  “If my child understands and is capable, then why doesn't he demonstrate it?”

One of the parents in the comments, P.D., asked:  if my child understands and is capable, why don’t they demonstrate it?  She wrote:


“He knows that succeeding will get him a reward that he wants very badly, and yet he continues to struggle with ‘cat’ versus ‘dog.’  The potato chips, the trip to the trampoline, or five minutes of ‘Cars’ is just a few successful trials away, and yet he continues to struggle with ‘cat.’ Why on Earth would he do this if he understands the idea of a ‘curse,’ or what ‘cancer’ is?”

A couple quick comments: as any dyslexic would tell you, the ability to read has nothing to do with the ability to understand words.  One can understand what a curse or cancer is and not be able to read the words “cat” or “dog.”  Also, if after years of instruction he still can’t read “cat” and “dog,” then whatever methods being used aren’t helping, he probably has severe reading disability, and he might benefit from more targeted, specialized reading instruction.  ABA is a general-purpose therapy, not something targeted for reading.  (Indeed, if the mother is right and the child is truly incapable of reading even the simplest words, why offer this child therapy based on the premise of offering reward?  If a child is incapable of doing something, giving them a reward for doing it won’t make them capable of doing it).  But, of course, this child’s therapy is not my decision to make.

The question she asks, though, is a valid one.  I don’t know her son and I can offer only a possible explanation from personal experience, which may or may not apply to him.  Here’s the story:


As a child, I was clumsy and as a result, delayed in learning various self-care and play skills like tying my shoes or riding a bike.  Puzzled by such developmental delays in a smart, otherwise normal kid, my parents reacted badly.  Sometimes they told me I was bad at this stuff, dubbed “practical things,” which made me feel self-conscious about it.  I also knew I had difficulty doing certain tasks (although not why), and was afraid whenever I encountered new, similar tasks that I would be unable to do them.  Between this anxiety and my fear of being criticized, I was afraid to try all sorts of things.  When I had difficulty learning to use the TV and VCR controls, I was afraid to press any buttons in front of my family because I was afraid they would criticize me for not knowing how to do it already.  Ironically, my fears made me even more delayed.  I did not even attempt to ride the train or cook something more complicated than a microwaveable meal until I was in college, and even then, doing so required overcoming considerable fear.


Children—and adults—do not demonstrate their capacities on a difficult task if they’re afraid of failing.  The application to kids with more serious disabilities, where the emotional consequences of failure are a lot worse, should be obvious.  A few minutes on a trampoline or a bag of chips might not be enough reward to overcome anxiety that, over years, has become an ingrained physiological reaction.
 

4) “People who object to how I’m talking to my child just have a different form of autism than my child, and they’re projecting their experience onto ours.”


In the comments, P.D., mother of the severely disabled child described in argument #3, wrote a very articulate example of this argument:


“So that is why they are shaking their heads: their autism experience is different than yours. Different. Your assertion is offensive to some of us; the fact that you understand the Internet, the concepts of punctuation, of being offended, of streamed Internet videos of Congressional hearings, while having the same label as our children is meaningless to us. It does not speak towards our experience, does not speak towards the challenges our children face. It is really pretty simple, but you have to be willing to accept that other people have different flavors of autism than you do, and your capacities, or the capacities of some random people on the Internet are not generalizable to everyone with the increasingly broad label of autism.”

Maybe their experience of autism is different, but one can’t know that.  Some people who now type blog posts about their abuse by well-meaning parents and therapists were originally entirely nonverbal, with plenty of challenging behavior and sometimes self-injury. Is that a different “flavor” of autism from another nonverbal child like P.D.’s?  Was their parents’ experience all that different?  Perhaps, but it’s certainly not obvious.

Like anyone else, people with autism do learn and grow.  This is one reason why it’s hard to tell whether an autism therapy works, because the child might have learned the skill anyway.  Thus, one cannot tell an autistic person’s childhood level of functioning from the fact that they can now rant on their blogs about how their parents treated them.  Look at Temple Grandin.  She’s now the poster child for success with autism, but she was once a nonverbal, “low-functioning” child.


The fact is, even people with a different “flavor” of autism than a given autistic child share experiences with that child that a neurotypical parent wouldn’t. Some of these pertain to the condition itself: the experience of having a social disability, difficulty communicating, obsessive behavior, language problems, sensory overload, meltdowns, and so on.  Some of these pertain to how caretakers treat people with autism—such as growing up with a parent who sees you as essentially mindless and soulless the way people centuries ago used to view animals.  If someone who was treated this way knows it hurts, they know what they’re talking about.

If someone who used to be nonverbal but can now speak carries emotional scars from picking up parents’ attitudes that he was less than an animal, this should at least convey a warning that one’s child could share a similar experience, and that maybe one should do something to prevent it.  And, given all the reasons why one would want to deny such a thing (see argument #2), all the more reason to make extra effort to avoid going into denial about it.
 
5) “I’m this kid’s parent, therefore I know more about them than you do and to criticize ANYTHING I do is presumptuous.”


Again, all autistic people share variations of certain experiences, whatever their “level of functioning.”  This particularly concerns how others treat them due to their visible and invisible disabilities.  Any random autistic adult may be quite different than any random autistic child, but they will still have more in common with the child than the child’s own parent, if the parent is neurotypical.  The parent may know their child’s individual quirks and history best, but they do not necessarily have a better understanding of the child’s motivations, any unrevealed capabilities, or what it might be like to be that child.  That said, they are the ones responsible for the child, and have the final decision on how to help the child, and autistic adults have to respect that.


Here, unlike most of the other arguments, I can see where a reasonable person would disagree.  However, I cannot accept that simply being a child’s parent automatically means you know more about the child than someone who actually perceives, thinks, feels, and acts like the child—or has done so at a similar age.
 


Why presume competence?

These parents are right about one thing: I don’t know whether their child, or anyone else’s, actually is competent. Neither do they.  Neither, really, does anyone, except perhaps the child.

Still, I think the only ethical way to act is to presume competence, whether or not it actually exists.
To address P.D.’s confusion, “presuming competence’ doesn’t mean pressuring the child to do something right now without any supports and getting frustrated when they fail.  Remember, my own experience with this just made my motor delays worse.  No, I mean assuming that a person can understand what they say, even if they have limited ability to respond; and that they can potentially communicate or do other tasks if given the right support, feeling emotionally safe, and able to put in extensive effort and practice. 
To borrow from Elizabeth Grace, who explains this a lot better than I do, a form of Pascal’s Wager applies.  Let’s walk through the consequences of presuming competence vs. not presuming it and it will be obvious why presuming competence is the only ethical thing to do.
 
1) Let’s say you presume competence and your child isn’t competent.  Nothing changes. You haven’t lost anything, and neither have they.
2)  Let’s say you presume competence and your child is in fact competent. Then your child can feel supported and empowered, and the supports you offer will allow your child to improve his or her functioning.
3) If you believe your child isn’t competent, and in fact they are not: Nothing changes.
4)  If you believe your child isn’t competent, but in fact they are: they feel hurt and unsupported by their own family. The necessary supports were never offered, so their skills won’t improve, and on top of that they’ll end up with the sort of long-lasting emotional scars that lead autistic adults to go around attacking autism parents.  For the sake of everyone’s mental health, please don’t do this!


If you presume competence, the consequences are at worst neutral and at best positive.  If you assume incompetence, the consequences are at best neutral and at worst dreadful.  The choice is obvious.