Early Intervention in Deafness.pdf

Infants and Young Children

Vol. 17, No. 4, pp. 284–290

2004 Lippincott Williams & Wilkins, Inc.

Family Stories

Early Intervention in Deafness

and Autism

One Family’s Experiences,

Reﬂections, and Recommendations

Katharine Beals, PhD

This article describes one family’s experiences with the early intervention system in its treatment

of their son, first diagnosed as deaf, later as autistic. Parents in both deafness and autism quickly

find themselves mired in bitter disagreements, whether between sign language and speech ad-

vocates, or between believers in developmental versus behavioral approaches to autism. Experts

in deafness, for all their squabbling, agree on early intervention’s top priority: language. Specific

methods and materials abound for teaching both sign and spoken language to deaf people. Autism

intervention, dominated as it is by psychology/psychiatry gurus rather than educators, offers only

the vaguest and the most schematic of intervention strategies. While often passed off as com-

prehensive curricula, these strategies fall far short of the specificity, practicability, and effective-

ness of intervention materials for deaf children. Ultimately, parents realize that it is up to them

to devise specific lessons for their children, and that it is up to all of us who work with autistic

children directly—parents, teachers, and therapists—to compile, collectively, the truly compre-

hensive autism curriculum that we all so desperately need. Key words: applied behavioral anal-

ysis, auditory-verbal, autism, cochlear implant, deafness, early intervention, floor time, sign

language

T HIS article will describe our personal ex-

Experts in both deafness and autism are dis-

tracted by bitter disagreements between op-

posing camps, whether it’s the sign language

versus the speech advocates, or the develop-

mental versus the behavioral psychologists.

Not only does this prevent the experts from

collaborating when they should, but it also af-

fects parental choice. We, like many parents,

saw some virtues in each camp, but when we

tried to pick a la carte from their offerings we

found once-friendly professionals now judg-

ing us as traitors or as bad parents.

In many ways, deafness is a more straight-

forward disability than autism. Experts, for

all their squabbling, agree on both the key

problem, inaccessibility to sound and speech,

and the top priority of EI, teaching language.

Specific, tried-and-true methods and materi-

als abound for teaching both sign and spoken

language to deaf people. Centers, clinics, and

perience with the early intervention (EI)

system in its treatment of our son, first diag-

nosed as deaf, later as autistic. Neither the

“deaf intervention” nor the “autism interven-

tion” systems proved perfectly sensitive to

our needs. Those areas in which the for-

mer differs from the latter, however, suggest

ways in which autism intervention might be

improved.

From the Autism Language Therapies, Philadelphia,

Pennsylvania.

Corresponding author: Katharine Beals, PhD, Autism

Language Therapies, 516 Woodland Terrace, Philadel-

phia,

19104

(e-mail:

beals@autis m-language-

therapies. com ).

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Early Intervention in Deafness and Autism

285

staff are abundant enough that we never

waited long for their services. An empiri-

cally tested medical intervention for deaf-

ness has also emerged: the cochlear implant,

which, for early implantees like our son,

has proved to be a near-complete cure for

deafness.

Autism, a much more recent diagnostic cat-

egory, is far less straightforward. Experts still

do not agree on the key problem, which leads

to wildly different, mutually contradictory,

intervention strategies. While those in differ-

ent camps have outlined general approaches,

none have provided materials as specific, and

as clearly empirically effective, as those avail-

able for deaf intervention. As we quickly dis-

covered, services are scarce and long waits are

typical. Although every few months bring an-

other claim of a miracle treatment, nothing

approaching a scientifically proven cure has

emerged.

Discouraging as it is that we haven’t been

able to cure our son’s autism as we have his

deafness, we accept that, as a far more com-

plex disorder, it doesn’t admit of easy solu-

tions. What we found far less acceptable was

the lack of specific intervention materials de-

spite the many assurances that we kept hear-

ing from professionals that these existed. One

highly touted expert, book, or program after

another turned out to offer little in the way of

specific advice, specific treatment activities,

or specific autism-focused curricula. Spoiled

by all the specific teaching materials we’d

found for deafness, we expected the same for

autism.

Ultimately, we realized that the best way

to intervene in our son’s autism was to de-

velop our own materials, and that the best

source of existing ideas would come not

from the high-level autism gurus, but from

other parents of similar children and from

the professionals—teachers and therapists—

who work directly with them. With the

autism gurus preferring philosophical debate

to lesson planning, it’s we “low-level” experts

who should be compiling the comprehensive

autism curriculum that we all so desperately

need.

A BOY BETWEEN DEAFNESS

AND AUTISM

“He hears, but he doesn’t know he hears.”

We’re sitting at a small table in a tiny therapy

room at the Helen Beebee Clinic outside of

Philadelphia—myself, Jane, the speech thera-

pist, and Jason, my 2-year-old son. A moment

in time: Jason peering under the table at the

keys Jane has just jingled, me turning my head

away from him to watch Jane’s reaction, Jane

uttering that strange sentence. I haven’t real-

ized it yet, but this moment marks a turning

point.

It’s been 5 months since Jason, born pro-

foundly deaf, had his cochlear implant turned

on; 3 months since he first turned toward the

piano when I pounded out those chords; 1

month since he started making his soft, ten-

tative vowel sounds. And now, for the very

first time, we see him seeking and finding the

source of a hidden noise. After more than 1 1

/ 2

years of silence, Jason is clearly, unequivocally

factoring a new sense into his mental map of

the world. Yet, Jane insists, “He hears, but he

doesn’t know he hears.”

“But didn’t you see him look under the

table?”

How silly of me to ask: of course she did.

But Jane is shaking her head at Jason, who

is now looking off into the middle distance,

his broad mouth ajar, his blue eyes glazed.

Although she hasn’t articulated it clearly, she

has seen everything that I have, and more.

Somehow witnessing Jason locate sound has

squelched rather than rekindled the enthusi-

asm with which she first greeted him all those

weeks ago. She now suspects something that

will take me and my husband many months to

discover.

At first we thought we could blame every-

thing on Jason’s deafness. Obsessively turn-

ing lights on and off, spinning things, staring

at fans—this was how he had coped with si-

lence, filling it with visual excitement; by the

time sound arrived these habits were deeply

ingrained. His social aloofness and frequent

dazes were the lingering consequences of his

first 9 months of life, before people realized

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I NFANTS AND Y OUNG C HILDREN /O CTOBER –D ECEMBER 2004

he was deaf and started using sign language—

9 long months of isolation from so much hu-

man interaction. His still-limited vocabulary

was both a relic of his delayed introduction to

sign language, and an ongoing consequence

of the clumsy signing of his rookie parents.

But now as Jason, through the miraculous

technology of a cochlear implant, has gone

from being deaf to being able to hear, and yet

fails to tune in to people and absorb speech

as Jane’s other implanted clients do, she is

the first to wonder. From this day forward

she will sigh and shake her head, furrow her

brow, lose steam, and address my son with an

increasingly sad and subdued “Jason, Jason.”

More than the vague concerns that Jane’s new

attitude and oblique remarks start instilling in

me, it’s these signs in and of themselves, all

these signs of this normally so optimistic and

energetic woman giving up on my son, that

will upset me the most.

consider sign language the only language fully

accessible to profoundly deaf children. To

them any speech-centered approach, particu-

larly one that so completely rejects visual lan-

guage, both undermines deaf culture and de-

prives the child of the only language he is

capable of mastering. The teachers at the

Pennsylvania School for the Deaf, whose

signing-based EI program Jason had been at-

tending since he was 9 months old, were

no exception. When we let on that we’d be

checking out the Helen Beebee Clinic, their

faces filled with dismay. It was bad enough

that we’d implanted Jason with a cochlear

device; now it looked like we were doing

what we assured them we would never do—

abandon sign language and deaf culture.

“I’m really surprised that you’re considering

the Beebee Clinic.”

“You’re not giving up on sign language now,

are you?”

“You’re not planning to leave our program,

are you?”

I couldn’t fault our deaf friends for taking

us to task, but it troubled me that some of

our EI teachers, connected personally as well

as professionally with the deaf community,

stood in judgment, however diplomatically,

as we navigated through this charged arena.

I wanted to think of myself like any other

parent, freely choosing among educational

options—perhaps going whole hog for one

approach, (eg, a “whole language” reading

curriculum), or perhaps choosing a la carte

(some “whole language”; some phonics)—

without feeling pressure to explain myself to

the professionals.

At first the dilemma between signing and

speech seemed terribly forbidding. At stake

was no less than Jason’s intellectual, social,

and professional future. Either approach by it-

self seemed doomed to fail him in key areas;

combining them might yield the worst of both

worlds. But then I remembered what my grad-

uate work in linguistics had taught me about

the popular notion that it’s too confusing for

very young children to learn several languages

at once. This, in fact, has turned out to be

EI IN DEAFNESS

I hadn’t expected our sessions at the Helen

Beebee Clinic to be easy, but I thought our

trials would be more pedagogical—a series

of debates and dilemmas over auditory ver-

sus visual teaching methods. The late Helen

Beebee, a pioneer in the auditory-verbal

(A-V) approach to speech therapy, famously

rejected sign language and lip-reading both

as modes of communication and as therapeu-

tic methods. Convinced that all deaf children

have some residual hearing, which, amplified

by hearing aids, suffices for mastering lan-

guage through sound alone, she and her fol-

lowers have argued that any signing or visual

cueing will tempt the child away from the

strict auditory regimen that is his only hope

of functioning fully and independently in a

world where communication is largely oral

and visual cues are few and far between. Sum-

ming it up is the hallmark of an A-V training

session: the black, face-sized screen that the

therapist holds between her client’s searching

eyes and her own otherwise revealing lips.

Vociferously opposing A-V training are not

only most people in the deaf community, but

also the many educators and therapists who

Early Intervention in Deafness and Autism

287

a myth. The multilingual child, while at first

he or she learns more slowly and chaotically,

soon catches up with his or her monolingual

peers, with all the additional advantages of

multilingualism.

For Jason, for any deaf child, I concluded,

a heterogeneous strategy is best. Start him

with sign language, the far easier and more

accessible language, and add speech in a year

or two when he’s patient and disciplined

enough to learn how to read lips, move his

own mouth appropriately, make full use of

his hearing aids, and, should hearing aids turn

out not to yield enough useful sound, dis-

tinguish ambiguous lip movements through

the manual cues of cued speech. Even after

we’d learned how effective cochlear implants

could be and decided to have Jason im-

planted, we stuck to bilingualism as the most

robust, dependable strategy, though now Ja-

son, if all went well, would learn his second

language through sound alone.

It isn’t just the individual professionals and

their cultural and philosophical biases, but

also the broader systems in which they work,

that tend to discourage a bilingual approach

to deafness. This, perhaps, is why deaf high

school graduates, deficient in both the finer

points of English grammar and the worldly

knowledge that a more accessible language

like sign would bring them, read on average at

a third- or fourth-grade level. EI centers, like

the grade schools their graduates attend, are

typically either sign-based or speech based,

and we parents have little choice within our

designated school districts.

Our only recourse, then, is to supplement

our publicly funded programs with private

ones for which we must pay out of pocket.

But private programs, able to turn down appli-

cants, may hesitate to accept clients in EI pro-

grams whose philosophies they disagree with.

When I looked into supplementing Jason’s EI

sessions at the Pennsylvania School for the

Deaf with a speech-based EI class at a local

private school, their admissions director told

me: “If he’s attending the Pennsylvania School

for the Deaf and you’re signing with him at

home then that’s a real problem. Our program

is oral only.” She’d have to think it over. How

narrow and patronizing, this second-guessing

of me and of my child’s best interests. What

business was it of theirs what we did outside

their building?

Were it not for a recent, dramatic shift in

their philosophy, Jason’s signing background

would also have disqualified him from attend-

ing the Helen Beebee Clinic. Recognizing that

many of the children newly implanted with

cochlear implants attend signing-based EI pro-

grams, and that, despite this, their implants

make them especially receptive to A-V train-

ing, the clinic had set up a separate “track”for

implanted kids and, albeit grudgingly, allowed

them to remain in their signing classes.

But among all these young implantees,

Jason had by far the broadest, deepest back-

ground in sign language. While most deaf chil-

dren aren’t diagnosed until 1 1

/ 2 years, we’d

found out he was deaf when he was 9 months

old. Within months we’d hired a deaf, live-

in nanny to immerse our family in sign

language—something few parents can afford.

Now, with the Helen Beebee Clinic’s contin-

ued reservations about sign language in gen-

eral and Jason’s background in particular, I

had to start second-guessing my decisions.

Maybe deaf children, about whom there is so

little data, are an exception to what I’d learned

about multilingualism. Perhaps, even if they

use implants, sign language still tempts them

away from acquiring speech as readily as other

young children learn their second languages.

Could this be why Jason was falling behind?

How I wished someone out there knew the

answer.

Through Jason’s first years up to this point,

we’d enjoyed expert guidance. From the mo-

ment we set foot inside the Pennsylvania

School for the Deaf, signing staff members

greeted us with sign language classes, vocab-

ulary lists, books, and videos. Teachers made

home visits to show us how to integrate sign

language into our home life, how to get Jason’s

attention, engage him in “sign play,” read

to him in sign language. A booklet of oral-

auditory exercises from Jane at the Helen

Beebee Clinic let me replicate what she did

at home. For neither program did the philo-

sophical debates and turf battles detract from

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I NFANTS AND Y OUNG C HILDREN /O CTOBER –D ECEMBER 2004

their main goal: educating and empowering

the children and their parents.

And so, as it turns out, that moment in

Jane’s office marks another transition—from

EI strategies based on education and detailed

curricula, to strategies in which philosophical

debate and vague theory hold sway over ped-

agogical specifics.

called pervasive developmental disorder

[PDD], which isn’t as bad as it sounds

and may simply mean social aloofness or

eccentricity.”

There are those parting remarks from Jane

on her last day at the Helen Beebee Clinic:

“He’s tuning in more and more, and I’m not

nearly as concerned as I was. But in case you

need it, here’s the phone number for that psy-

chiatrist specializing in deaf children.”

Most maddeningly, there is Jason himself—

at times so alert and engaged, always clever,

and understanding more and more spoken

words; other times so dazed, unaware, and un-

comprehending, especially of people.

Something finally tips the balance. I make

my first call to the psychiatrist Jane recom-

mended. Weeks pass before our insurance is

cleared and the appointment set up. Months

pass before the appointment day. Finally, the

actual appointment, and again I expect to

learn something.

“He does have a problem,” the psychiatrist

remarks, as she observes our 2 1

THE SECOND DIAGNOSIS

Among all the EI specialists we worked

with, it was Jane who knew her clients most

intimately. In a private institution unaccount-

able to the state, free of the oversized classes

and time-consuming paperwork that plagued

the teachers at the Pennsylvania School for

the Deaf, she spent nearly every working hour

in intensive, one-on-one sessions with deaf

children. Only she could begin to disentan-

gle the overlapping symptoms of deafness and

autism—social aloofness, delayed language, a

predilection for visual stimulation. Only she

could see just how Jason differed from his

peers.

But what exactly she sees I never find out.

Like so many parents in so many similar situa-

tions, I can only wish that everyone who sus-

pects additional problems would be as direct

with me as others were about deafness. Hon-

esty couldn’t possibly distress me more than

Jane’s mournful “Jason, Jason.”

Or her sudden announcement, now, that

the Helen Beebee Clinic requires its patients

to undergo occupational therapy evaluations.

Why did no one mention this earlier? Suspi-

cious, I make the appointment anyway: accus-

tomed to the informative content of Jason’s

speech and hearing evaluations, I hope to

learn something new. But the nonsigning oc-

cupational therapist focuses more on me than

on Jason, with a questionnaire about what he

can and can’t do, and her report, when I fi-

nally receive it, is little more than a summary

of what I told her. Its most salient red flag: “Of

concern is Jason’s eye contact.”

This inconclusiveness seems to be ev-

erywhere. There’s our doctor’s response to

my reports from the Helen Beebee Clinic:

“They’re probably worried about something

/ 2 -year-old son

crawling across her feet.

“What is it? Is he autistic? Does he have

PDD?” I ask.

“I don’t like labels” she replies.

We attend each successive appointment

hoping to learn more. But the psychiatrist

shines her psychotherapeutic stethoscope on

us rather than on Jason. As it turns out, it is

we, not she, who must serve as Jason’s ther-

apists. It’s up to us to engage him and draw

him out into our world. Her job, apparently,

is to sit back and critique us. Unfortunately,

since she hardly interacts with Jason herself,

many of her criticisms are way off-base. Un-

aware of how little he understands, she insists

we explain things to him that we simply can-

not communicate.

Jason, meanwhile, has become so wild

and unfocused that all of us who live and

work with him grow desperate for supportive

services—wraparound aids—to help manage

his behavior at home and keep him on task at

school. But services require diagnosis.

In fact we know the diagnosis. Since our

psychiatrist wouldn’t tell us, we’ve sought it

out ourselves. We’ve read and read. We’ve

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