Tuesday, September 10, 2013

Why the "normal child inside" myth just won't die

Ever since I posted my recent entries on autism and the "normal child inside," I keep seeing new reports of novel incarnations of this miracle child. The most recent appeared in this weekend's Philadelphia Inquirer: a profile of an autistic child by his father.

As additional material on the father's blog reveals, the child in question, now 18, spent his early years speaking entirely in echolalic speech. This means that he'd parrot back entire phrases verbatim during situations that reminded him of the situations in which he'd originally overheard these phrases. Eventually his echolalia subsided, and this left him mute. Never in his life, in other words, has this child spoken an original sentence on his own. But several years ago the family discovered Facilitated Communication, and their nonverbal teenager started typing phrases and sentences with "light support under the wrist." A recent sample:

my typing is good today because my brain is very calm and my badly coordinated body moves better when my thinking is calm.
Or, in reaction to a pending hurricane
getting ready for disasters is stressful work but being home with your family is more important than wasting time at gas stations. this will be a interesting event that might be a historical event or a big dissappointment. i think a historical event.
A child who types with "light support under the wrist" is visually indistinguishable from a child whose hand is being manipulated by the person who supports that hand. And in fact, in the best studied cases of so-called Facilitated Communication, it has consistently turned out, whether or not the facilitator realizes this, that it's actually the facilitator, not the child, who's deciding which keys to type.

There's another problem with Facilitated Communication in autism. Typically, the "facilitated communications" sound more neurotypical than autistic, evoking that normal child trapped inside, struggling to communicate, connect with others, express his love for his parents and siblings, and, often, speak on behalf of all autistic people in the world. But, as I've written before, the neurology and psychology of autism has shown that there simply is no socio-emotionally normal child residing inside the autistic one. Even the highest functioning autistic individuals, those who can communicate independently and fluently (Temple Grandin being the epitome), show, throughout their spoken and written communications, fundamental deficits in social awareness, cognitive processing, and emotional experience.

Why does the myth of the normal child inside refuse to die? Partly, of course, it's wishful thinking. And the hope, despite what all the brain research shows, that the core deficits of autism aren't social and cognitive. What a horrible thing to say about a whole subpopulation of humanity, some have objected, that it is so lacking in empathy skills! But take another (very different) subpopulation of humanity: the psychopaths. Should we ignore the truth that psychopaths are inherently indifferent to, and even may take pleasure in, the suffering of others, simply because that's a horrible thing to say about anyone?

But there's second reason why the "autistic but normal inside" myth keeps lingering. This has to do with certain misleading aspects of specific subtypes of autism. Consider, for example, two of the subtypes at the mild end of the autistic spectrum and beyond:

1. Fuzzy, borderline cases: kids who look mildly autistic in their early years, at least to some clinicians and lay people, but whose symptoms either fade with normal development, or who learn to "pass" as normal.

2. Normal inside and only look autistic. These are kids whose core problem is apraxia or sensory problems rather than autism. Their failure to speak, point to things, and/or co-ordinate their eye gaze with the eye gaze of other people reflects motor issues rather than social deficits. Or, in the case of kids with sensory problems, their withdrawal reflects auditory or visual overload rather than social detachment. Give them an alternative communication system that they can use independently (i.e., without "light support under the wrist"), or help them cope with their sensory issues, and their skin-deep symptoms of autism "miraculously" fade away.

Then we have, at the severe end of the autistic spectrum:

3. Low functioning and purely echolalic--i.e., everything these kids say merely echoes overheard phrases and sentences. But because their speech is grammatical, fluent, spoken with proper intonation, and (at least on occasion) apparently relevant to current circumstances, it may seem communicative to hopeful listeners. However, if the child isn't producing any original sentences that are similarly sophisticated, what "linguistic" knowledge s/he has acquired is likely just a simple association of sound patterns and key words to situations. Such associative learning doesn't include a real understanding of sentence structure and intentional communication. It's like the dog who seems to understand "Do you want to go outside?" because whenever it hears this sound pattern it runs to the door. (NB: I'm making a linguistic comparison here, and not a comparison of autistic people to dogs!) But autism specialists unfamiliar with the subtle linguistic distinctions between parroting and communicating will often tell parents that "your child takes in more/understands more than he or she seems to." Unfortunately, the opposite is more likely the case.

4. Nonverbal, no eye contact, and showing no attempts to communicate any thing other than basic wants independently--whether orally, with gestures, or otherwise. With whatever thoughts and non-basic intents and feelings they have thus completely invisible, these kids inspire mystery. They are, in a sense, tabulae rasae onto which all sorts of neurotypical propositions can be projected--especially with the help of a keyboard and a guiding hand. Ironically, their slightly higher functioning counterparts who occasionally speak in simple one to three word phrases may actually be viewed as substantially lower functioning in comparison--because rudimentary language leaves less to the imagination than no language at all.

The same goes for fleeting attention and eye contact, as opposed to no apparent attention at all. "They understand more than they appear to" is one of the most oft-repeated claims made by non-language specialists about the lowest functioning autistics.

Why have so many of these "autistic but normal inside" kids been appearing in the media recently? Perhaps it's that the most sensational debunking of Facilitated Communication occurred some 20 years ago. Memories are short, and a number of hopeful parents and credulous reporters/viewers may be too young even to remember. But current trends in education mean that more stories of "unlocked" kids than ever before are in the works.

First, the increasing inclusion of autistic kids into regular classrooms and the increasing imposition of a one-size-fits-all curriculum on all kids, regardless of special needs, means that teachers with autistic students and paraprofessionals who help these students are feeling increasing pressure to "unlock" great potential. They may now end up, willy-nilly, providing so much assistance to the lower functioning kids that these kids do very little work themselves. Combined with this, the growing assumption that all kids can and must meet grade-level Common Core goals may pressure some educators to believe that their students are mastering skills that they aren't even close to mastering.

On top of this, there's the growing use in classrooms of increasingly sophisticated assistive communication devices that may make it look like students are communicating (and understanding) more than they actually are. Consider, for example, the latest in what's called "text prediction" software:
A.I.type is an intelligent keyboard with revolutionary context-sensitive text prediction, auto-correction, auto-learning, undo/redo/navigation capabilities and cool (and customizable!) skins (WP7, Windows 8 and iPhone for instance). And also it “understands” what users are typing and offers word and sentence completion that help the user type just a minimal number of letters. A.I.type's smart prediction algorithms maintain the context and the meaning of the text, while making typing easier, faster and better, with the correct grammar, syntax and spirit.
Of course, now that neurotypical children are also, increasingly, struggling with basic communication skills, and using such devices themselves, the devices, the more their sophistication compensates for what's not happening elsewhere, may appear to be unlocking everyone's supposed communicative potential, further complicating the question of the "normal child inside."

4 comments:

FedUpMom said...

I read somewhere that people with autism have trouble "chunking" -- that is, breaking up data into meaningful chunks. That's why they'll repeat an entire monologue from a movie -- they take it in as one chunk, not as a series of separate words. Do you think that's correct?

Katharine Beals said...

FedUpMom,
There's something to that, for sure, but the other question, with the echolalic child, is whether the child even knows the relevant meanings. If the child lacks vocabulary and syntax, he or she won't be able to parse the sound stream into words and phrases. Typically echolalia reflects that inability: it indicates a low level of language acquisition. To the echolalic child, the sound stream of speech remains just that: a specific pattern of tone and frequencies (just as it would appear to be with dogs who react to "do you want to do on a walk?")

ChemProf said...

I think the apraxia issue is a big one -- both my kids have apraxia. My son's is more severe and may have an auditory/language processing component, but he's two. For my daughter, the apraxia meant she got stuck in echolalia, but her echolalia was cogent -- it applied to what she wanted to say and she'd reverse pronouns or change a word to be the thing she wanted, but it was easier for her to say something she'd heard several times on TV than to come up with a new phrase. It sounded like spontaneous speech, unless you watched TV with her. Right now, the problem is that she gets non-verbal when upset or overwhelmed, because it is too hard to organize a verbal response, which is a big issue in group settings. So I could easily imagine a teacher assuming this is ASD.

Anonymous said...

I have mixed feelings about this. It's clear that "facilitated" communication is a sham. On the other hand, it's also clear that it brings comfort to struggling parents. The facilitator almost always types out messages of love and appreciation. The noncommunative child turns out to be wise and witty. It's easy the say that the truth will make you free. The reality may be that some people can't handle the truth.