Re-education: Why do we insist on speech therapy for “high-functioning” kids?
When my son was diagnosed with Autism, the assessment team gave us a detailed report of all of his “deficits” — mostly his communication style. His eye contact was not typical. His speech was scripted. He didn’t gain attention before speaking. He reversed his pronouns. They recommended that we contact a speech therapist immediately.
In the confusion and panic that followed the diagnosis, I spent much time and energy on this task. I had read that speech therapy is one of the few interventions for Autism that has been proven effective with solid scientific research. I read a lot about the “critical window of cognitive development.” We had to get him started Right Now Hurry Quick! while his brain was still plastic. After a grueling three-month quest involving 15 evaluations and two grievances and appeals to our HMO, we were finally approved for eight sessions.
I really like our therapist. She is competent and warm and very good at engaging with M. She was so highly recommended by other parents that when I finally met her, I felt like I was meeting a celebrity. And she really is that good. After just a couple sessions, we saw changes.
But in the months since I first began the search for a therapist, my thinking has changed considerably about our reasons for wanting that therapy. So much so that I now feel somewhat conflicted about continuing it.
M started talking early, and can usually express his needs pretty clearly. Anybody familiar with Autism can tell he’s on the spectrum, but people who don’t know just see a bright, talkative boy who sometimes asks the same question a dozen times in a row. He doesn’t always make eye contact, and he struggles with conversational turn-taking. There are lots of other smaller quirks, most of them noticeable only to me and the many SLP’s who evaluated him.
He’s the kind of kid who might not have been diagnosed with Autism 30 years ago. By all accounts, kids like M eventually grow out of the pronoun reversal and the echolalia, with or without speech therapy.
Most of the research on the importance of early intervention and speech therapy is based on work with kids whose communication is much more profoundly affected. If M had not developed expressive language at all, I would not be navel-gazing about speech therapy. I am not questioning whether the ability to communicate your needs to the rest of the world is an asset.
But I do wonder about the urgency we attach to early intervention and therapy for kids whose language development is only slightly atypical — kids who are able to communicate, but who do so a little differently than their peers. Or who simply develop or perfect that ability later than normal. When M is 30, will it matter if he grew out of the echolalia when he was two or when he was eight?
Each time I hear myself correcting his pronoun usage — even though I understood what he meant — I think of Steven Pinker’s wonderful book, The Language Instinct. Pinker spends an entire chapter skewering the Language Mavens — the self-appointed authorities on the English language who spend their days pointing out split infinitives. He argues that most “rules” of English grammar were invented in 18th-century London as a way to enforce class distinctions. Only the upper class, with access to education and grammar manuals, knew how to speak the “best” version of English. When we use scrupulously correct formal English, we are really communicating something about our social class, culture, and level of education. This theme is addressed in Pygmalion, later remade as the film My Fair Lady.
When I correct M’s pronouns, am I helping him learn to communicate? Or am I instinctively trying to squelch a reminder that he is Autistic, and that his speech is atypical? I know he will grow out of the pronoun reversal, whether I correct him or not. So why am I in such a hurry to “fix it” right now?
Of course, I want to get M any kind of therapy that might help him. Just as all immigrants to this country want their children to learn English, I want M to learn how neurotypicals communicate. We are not teaching him to be neurotypical — but knowing how to speak their language can only help him.
Still, all the emphasis on early intervention and “correcting” his speech makes me wonder how much of this is really for M’s benefit and how much is motivated by our own discomfort with his difference.
I had been thinking about all of this for weeks, and then I read Ari Ne’man’s recent interview in Wired:
As a society, our approach to autism is still primarily “How do we make autistic people behave more normally? How do we get them to increase eye contact and make small talk while suppressing hand-flapping and other stims?” The inventor of a well-known form of behavioral intervention for autism, Dr. Ivar Lovaas, who passed away recently, said that his goal was to make autistic kids indistinguishable from their peers. That goal has more to do with increasing the comfort of non-autistic people than with what autistic people really need.
It’s true that many therapies are aimed at increasing the comfort of non-autistic people. But can’t we find a way to teach our children to recognize and understand the conventions of the dominant culture, in a way that is respectful, without any implication that their own behavior or habits are less valid? What if we look at speech therapy for kids like M as more of an ESL class than a remedial therapy — an opportunity to learn a language that is widely used and useful, but not intrinsically better than the language they already speak?
M’s therapist chooses her words carefully. She always talks about reinforcing “more typical behavior;” she never tells me M is doing it wrong. She has clearly spent years dealing with the prickly, defensive parents of newly-diagnosed kids. In our very first visit, she earned my respect and trust instantly when she asked how I felt about discussing M’s speech issues, diagnosis, and goals in front of him.
I guess in the end I think that if he gains any advantage from the therapy, then it is worth doing. None of us intend to send the message that the way he naturally communicates is wrong. But he’s too young to tell me how he feels about any of it, so for now it’s all about my perception of his needs. Some day, the way his peers respond to his behavior will become a motivator. At that point, fluency in neurotypical conversational styles may help him make friends, and maybe he will be glad that he had the chance to work on skills that do not come naturally to him.
But I’ll probably have to wait a decade or so for M’s answer to that question.
Sarah Schneider’s Re-education: Why do we insist on speech therapy for “high-functioning” kids? first appeared at Kitaiska Sandwich, and is republished here by permission of the author.
Sarah Schneider on 10/14/10 in featured, Language | 8 Comments | Read More
Comments (8)
Hello. I can understand you feel as if he will “eventually outgrow” this way that he communicates. I’m telling you he may outgrow on the surface or he may learn to compensate by having other people communicate for him the first time he is questioned or “teased” about how he communicates. If he understands at a later time that he is “different”, he may develop an anxiety that stays with him for the rest of his life. I know, because I had a problem with communication, it wasn’t addressed, and I learned how to compensate, I felt as if someone else could express it better, so I found a way to have them do it. I became dependent on someone else, because I felt so insecure and had no confidence in my ability to communicate. I linger in depression because I wasn’t given the route early on in life to develop the “right way” to communicate.
I put “right way” in parenthesis, it doesn’t have anything to do with making NT people more comfortable with dealing with someone who has special needs, it has everything to do with helping the person with special needs get exactly everything they need in life to survive. Through healthy communication skills. It’s about building their confidence early on, helping them by giving them the keys earlier than the NT kids would be exposed to them. Children are practically speaking when they are born now, we promote this by buying the “flash cards, auditory tapes, educational programs, like day-care at 6 weeks, to keep up with the mainstream”. Why not give your child the same opportunity. I have learned this way too late in life. We can’t just let “our kids” come by it, learning how to speak differently than they are used to, at a later time, by way of someone else’s questioning.
I’m finding myself more and more upset with the ways in which our society views autistic ways of speaking and socializing as speech and behavioral problems. There’s an element of social control and pressure toward conformity that sends chills up my spine. Teaching the culturally constructed fine details of a skill as though they are objectively “right” has all kinds of troubling implications, for the individual and for the society as a whole.
I didn’t speak a single word until I was 2 1/2, and then I started speaking in complete sentences. I burst into hyperlexia. At the time, everyone saw me as a shy, quiet child who turned out to be very smart. Now, I’d be carted off to speech therapy, because it’s absolutely abnormal for someone to go from no speech to lots and lots of speech in the apparent blink of an eye. I can’t imagine what that would have done to my sense of myself. The definition of “normal” was much broader 50 years ago than it is now, and through all the many difficulties of my life, I’ve benefited substantially from that.
The social problems I have derive from the fact that I can’t read nonverbal cues. I can string words together, but that’s all I can do. I can’t see the nonverbals, and no amount of speech therapy or anything else will make them visible. I don’t make eye contact really well because I don’t understand how to use it as a nonverbal signal, and because when words are all you have, you spend a lot of time trying to understand where a person is coming from, and looking into their eyes distracts from that. I can fake eye contact, but I learned to fake it without therapy of any kind. Many of us did. We figured out that people expected eye contact and we did what we could.
I’m not saying that autistic kids can’t benefit from therapy. Many can and do. But it’s important to choose therapies carefully, and to not feel pressured into every single therapy that someone suggests.
The ability to communicate is necessary. Words have meaning and the correct use of words can convey thoughts even if one has trouble reading and using non-verbal cues.
Speech therapy isn’t about diction, but about language and they aren’t the same thing.
My youngest has “speech” and no “language”… and it’s becoming difficult for him to communicate and he’s becoming frustrated.
Julie: Thanks for your comment. I agree with you that “outgrowing” an atypical speech pattern may mean finding a way to compensate for it — with another atypical behavior.
However, pronoun reversal is an artifact of the gestalt language acquisition style. Children hear adults say “Do you want some juice?”; and they repeat back “You want some juice” instead of “I want some juice.” As they get older, they eventually learn the rules of pronoun use — it’s just that the rule-learning often happens later for kids with Autism than it does for their peers. The gestalt style isn’t *wrong* — it’s just noticeably different from the language acquisition style that most speech therapists are used to, and comfortable with.
The point of my essay is that we should re-examine the way we define a successful outcome for any kind of therapy, as Rachel mentions in her comment. It’s very tempting to jump into a therapy just because a professional recommends it. Obviously, I want evidence that the therapy is effective and that it does no harm. But beyond that, I want to be sure it is providing something my child truly needs.
I absolutely want to give my son every tool available to help him succeed. And that’s where I ended up for now — I’m sticking with the speech therapy for as long as our insurance will pay for it. But I’m sticking with it because I believe it is delivered respectfully, in a way that doesn’t make my son feel like there is something wrong with him. And I agree with you that respectful support can help increase his confidence in his communication skills.
Don’t mean to derail the discussion, but I’m not sure how else to reach ‘Jack’, who is obviously a reader of this site. So I’m posting a message to him here:
Dear Jack
This morning, you re-posted the full text of this essay (Re-education: Why do we insist on speech therapy for “high-functioning” kids?), without my knowledge or permission, on a forum hosted by Autism Speaks. I originally published the essay on my blog, and it was re-published by Shift today with my permission.
Mark Stairwalt graciously tipped me off to the re-posting and forwarded me some of the comments that had been posted in response after the first couple hours. I immediately applied for a membership account at Autism Speaks so that I could participate in the forum, but several hours later, my request to create an account has still not been approved.
I don’t believe that you meant any harm by re-posting the essay, and I am flattered that you found it thought-provoking enough to seek out more discussion on the issues it raised. While I welcome the opportunity for my ideas to reach a larger audience, I would have really appreciated a note from you before re-posting it, for several reasons.
1) I write to initiate conversations about ideas that interest me. When those conversations happen without my knowledge, in a private forum to which I am denied access, you shut me out of that conversation.
2) Although you did include my name as the author of the essay, you did not include a link back to my blog. If you had done so, I would have received a notification that you had linked to my site (again, offering me the opportunity to join the conversation). In addition, a link would have allowed commenters to respond directly to me, and to read more of my writing to put this essay in context. Several commenters began their responses with “If I could talk to the author in person, I would say…”
3) I write with a specific audience in mind. Although this essay was originally posted on my blog, I wrote it with the intention of submitting it to Shift for publication. If I had written this piece for publication in an Autism Speaks forum, I would have presented my ideas differently. I would not have changed the ideas themselves; but I would have acknowledged in the essay the controversy they might provoke with this particular audience. Many commenters on the Autism Speaks forum completely misinterpreted the point of my essay, and I believe this could have been avoided if I had revised it for this audience before publication.
4) This might seem like a nit-picky complaint, but you highlighted several sentences in bold type from my essay in your re-posting, but did not clarify that the emphasis was yours, not mine.
Again, I want to clarify that I don’t believe you meant any harm. And I genuinely appreciate your defense of my writing against attacks from people who clearly misunderstood what I was saying. I welcome future dialog with you and others from this forum; I only ask that you invite me to participate next time.
Respectfully
Sarah Schneider
Sarah, Hi! Thank you for responding to my comment. May I contact you with the e-mail address from the Kitaiska.sandwich website?
My comment/concern was not meant to be offensive in any way. I am very happy he is able to speak. I have an Autistic daughter, 15, who will go through years without talking and then start talking with wants/needs, but then regresses again. She gets continuous speech therapy through school. My hope is that when help is available all Parents will take it, instead of “waking up” one day, realizing everyone came to compensate for me and then I realized that wasn’t normal. People who don’t know you, and see you and if you function normally otherwise, get irritated when you can’t speak for yourself at an older age in life. I would like to elaborate more but privately.
Hi Julie
Of course — feel free to contact me privately. Thanks for taking the time to read and comment.
-Sarah