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Infants and Young ChildrenVol. 17, No. 4, pp. 284290

c 2004 Lippincott Williams & Wilkins, Inc.

Family Stories

Early Intervention in Deafnessand AutismOne Familys Experiences,Reflections, and Recommendations

Katharine Beals, PhD

This article describes one familys 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 quicklyfind themselves mired in bitter disagreements, whether between sign language and speech ad-vocates, or between believers in developmental versus behavioral approaches to autism. Expertsin deafness, for all their squabbling, agree on early interventions top priority: language. Specificmethods and materials abound for teaching both sign and spoken language to deaf people. Autismintervention, dominated as it is by psychology/psychiatry gurus rather than educators, offers onlythe 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 themto devise specific lessons for their children, and that it is up to all of us who work with autisticchildren directlyparents, teachers, and therapiststo 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

THIS article will describe our personal ex-perience with the early intervention (EI)system in its treatment of our son, first diag-

nosed as deaf, later as autistic. Neither thedeaf intervention nor the autism interven-tion systems proved perfectly sensitive toour needs. Those areas in which the for-

mer differs from the latter, however, suggestways in which autism intervention might beimproved.

From the Autism Language Therapies, Philadelphia,Pennsylvania.

Corresponding author: Katharine Beals, PhD, AutismLanguage Therapies, 516 Woodland Terrace, Philadel-phia, PA 19104 (e-mail: [email protected]).

Experts in both deafness and autism are dis-tracted by bitter disagreements between op-

posing camps, whether its the sign languageversus the speech advocates, or the develop-mental versus the behavioral psychologists.

Not only does this prevent the experts fromcollaborating 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 wefound 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, forall their squabbling, agree on both the keyproblem, 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

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Early Intervention in Deafness and Autism 285

staff are abundant enough that we neverwaited 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 fordeafness.

Autism, a much more recent diagnostic cat-egory, is far less straightforward. Experts stilldo 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, nothingapproaching a scientifically proven cure hasemerged.

Discouraging as it is that we havent beenable to cure our sons autism as we have hisdeafness, we accept that, as a far more com-

plex disorder, it doesnt admit of easy solu-

tions. What we found far less acceptable wasthe lack of specific intervention materials de-spite the many assurances that we kept hear-

ing from professionals that these existed. Onehighly touted expert, book, or program afteranother turned out to offer little in the way of

specific advice, specific treatment activities,or specific autism-focused curricula. Spoiledby all the specific teaching materials wedfound for deafness, we expected the same for

autism.Ultimately, we realized that the best way

to intervene in our sons autism was to de-

velop our own materials, and that the bestsource of existing ideas would come notfrom the high-level autism gurus, but fromother parents of similar children and from

the professionalsteachers and therapistswho work directly with them. With theautism gurus preferring philosophical debate

to lesson planning, its we low-level experts

who should be compiling the comprehensiveautism curriculum that we all so desperatelyneed.

A BOY BETWEEN DEAFNESS

AND AUTISM

He hears, but he doesnt know he hears.

Were sitting at a small table in a tiny therapyroom at the Helen Beebee Clinic outside ofPhiladelphiamyself, Jane, the speech thera-pist, and Jason, my 2-year-old son. A moment

in time: Jason peering under the table at thekeys Jane has just jingled, me turning my headaway from him to watch Janes reaction, Jane

uttering that strange sentence. I havent real-ized it yet, but this moment marks a turningpoint.

Its been 5 months since Jason, born pro-

foundly deaf, had his cochlear implant turnedon; 3 months since he first turned toward thepiano when I pounded out those chords; 1

month since he started making his soft, ten-tative vowel sounds. And now, for the veryfirst time, we see him seeking and finding thesource of a hidden noise. After more than 11/2years of silence, Jason is clearly, unequivocallyfactoring a new sense into his mental map ofthe world. Yet, Jane insists, He hears, but he

doesnt know he hears.But didnt 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, whois now looking off into the middle distance,his broad mouth ajar, his blue eyes glazed.

Although she hasnt articulated it clearly, shehas seen everything that I have, and more.Somehow witnessing Jason locate sound hassquelched rather than rekindled the enthusi-

asm with which she first greeted him all thoseweeks ago. She now suspects something thatwill take me and my husband many months to

discover.At first we thought we could blame every-

thing on Jasons deafness. Obsessively turn-ing lights on and off, spinning things, staring

at fansthis was how he had coped with si-lence, filling it with visual excitement; by thetime sound arrived these habits were deeply

ingrained. His social aloofness and frequentdazes were the lingering consequences of hisfirst 9 months of life, before people realized

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286 INFANTS ANDYOUNGCHILDREN/OCTOBERDECEMBER2004

he was deaf and started using sign language9 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 consequenceof the clumsy signing of his rookie parents.

But now as Jason, through the miraculous

technology of a cochlear implant, has gonefrom being deaf to being able to hear, and yetfails to tune in to people and absorb speech

as Janes other implanted clients do, she isthe first to wonder. From this day forwardshe will sigh and shake her head, furrow herbrow, lose steam, and address my son with an

increasingly sad and subdued Jason, Jason.More than the vague concerns that Janes newattitude and oblique remarks start instilling in

me, its these signs in and of themselves, allthese signs of this normally so optimistic andenergetic woman giving up on my son, thatwill upset me the most.

EI IN DEAFNESS

I hadnt expected our sessions at the Helen

Beebee Clinic to be easy, but I thought ourtrials would be more pedagogicala seriesof debates and dilemmas over auditory ver-sus visual teaching methods. The late HelenBeebee, a pioneer in the auditory-verbal

(A-V) approach to speech therapy, famouslyrejected sign language and lip-reading bothas modes of communication and as therapeu-

tic methods. Convinced that all deaf childrenhave some residual hearing, which, amplifiedby hearing aids, suffices for mastering lan-guage through sound alone, she and her fol-

lowers have argued that any signing or visualcueing will tempt the child away from thestrict auditory regimen that is his only hope

of functioning fully and independently in aworld where communication is largely oraland 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 thetherapist holds between her clients searching

eyes and her own otherwise revealing lips.Vociferously opposing A-V training are not

only most people in the deaf community, butalso the many educators and therapists who

consider sign language the only language fullyaccessible to profoundly deaf children. Tothem 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 iscapable of mastering. The teachers at the

Pennsylvania School for the Deaf, whosesigning-based EI program Jason had been at-tending since he was 9 months old, were

no exception. When we let on that wed bechecking out the Helen Beebee Clinic, theirfaces filled with dismay. It was bad enoughthat wed implanted Jason with a cochlear

device; now it looked like we were doingwhat we assured them we would never doabandon sign language and deaf culture.

Imreally surprised that youre consideringthe Beebee Clinic.

Youre not giving up on sign language now,

are you?

Youre not planning to leave our program,are you?

I couldnt fault our deaf friends for takingus to task, but it troubled me that some ofour 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 otherparent, freely choosing among educationaloptionsperhaps going whole hog for oneapproach, (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 stakewas no less than Jasons 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 aboutthe popular notion that its too confusing forvery young children to learn several languages

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

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a myth. The multilingual child, while at firsthe 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 moreaccessible language, and add speech in a yearor two when hes patient and disciplined

enough to learn how to read lips, move hisown mouth appropriately, make full use ofhis hearing aids, and, should hearing aids turnout not to yield enough useful sound, dis-

tinguish ambiguous lip movements throughthe manual cues of cued speech. Even afterwed learned how effective cochlear implants

could be and decided to have Jason im-planted, we stuck to bilingualism as the mostrobust, dependable strategy, though now Ja-son, if all went well, would learn his second

language through sound alone.It isnt 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 approachto deafness. This, perhaps, is why deaf highschool graduates, deficient in both the finer

points of English grammar and the worldlyknowledge that a more accessible languagelike sign would bring them, read on average at

a third- or fourth-grade level. EI centers, likethe grade schools their graduates attend, aretypically 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 Jasons EIsessions at the Pennsylvania School for theDeaf with a speech-based EI class at a local

private school, their admissions director told

me: If hes attending the Pennsylvania Schoolfor the Deaf and youre signing with him athome then thats a real problem. Our program

is oral only. Shed have to think it over. How

narrow and patronizing, this second-guessingof me and of my childs best interests. Whatbusiness was it of theirs what we did outside

their building?

Were it not for a recent, dramatic shift intheir philosophy, Jasons signing backgroundwould also have disqualified him from attend-

ing the Helen Beebee Clinic. Recognizing thatmany of the children newly implanted withcochlear implants attend signing-based EI pro-

grams, and that, despite this, their implantsmake them especially receptive to A-V train-ing, the clinic had set up a separate trackforimplanted 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 arent diagnosed until 11/2 years, wedfound out he was deaf when he was 9 monthsold. Within months wed hired a deaf, live-

in nanny to immerse our family in signlanguagesomething few parents can afford.Now, with the Helen Beebee Clinics contin-

ued reservations about sign language in gen-

eral and Jasons background in particular, Ihad to start second-guessing my decisions.Maybe deaf children, about whom there is so

little data, are an exception to what Idlearnedabout multilingualism. Perhaps, even if theyuse implants, sign language still tempts them

away from acquiring speech as readily as otheryoung children learn their second languages.Could this be why Jason was falling behind?How I wished someone out there knew the

answer.Through Jasons first years up to this point,

wed enjoyed expert guidance. From the mo-

ment we set foot inside the PennsylvaniaSchool for the Deaf, signing staff membersgreeted us with sign language classes, vocab-ulary lists, books, and videos. Teachers made

home visits to show us how to integrate signlanguage into our home life, how to get Jasonsattention, engage him in sign play, read

to him in sign language. A booklet of oral-

auditory exercises from Jane at the HelenBeebee Clinic let me replicate what she didat home. For neither program did the philo-

sophical debates and turf battles detract from

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their main goal: educating and empoweringthe children and their parents.

And so, as it turns out, that moment in

Janes office marks another transitionfrom

EI strategies based on education and detailedcurricula, to strategies in which philosophicaldebate and vague theory hold sway over ped-

agogical specifics.

THE SECOND DIAGNOSIS

Among all the EI specialists we worked

with, it was Jane who knew her clients mostintimately. In a private institution unaccount-able to the state, free of the oversized classesand time-consuming paperwork that plagued

the teachers at the Pennsylvania School forthe Deaf, she spent nearly every working hourin intensive, one-on-one sessions with deaf

children. Only she could begin to disentan-gle the overlapping symptoms of deafness andautismsocial aloofness, delayed language, apredilection for visual stimulation. Only she

could see just how Jason differed from hispeers.

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 directwith me as others were about deafness. Hon-

esty couldnt possibly distress me more thanJanes mournful Jason, Jason.

Or her sudden announcement, now, that

the Helen Beebee Clinic requires its patientsto 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 Jasonsspeech and hearing evaluations, I hope tolearn something new. But the nonsigning oc-

cupational therapist focuses more on me thanon Jason, with a questionnaire about what hecan and cant 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: Ofconcern is Jasons eye contact.

This inconclusiveness seems to be ev-erywhere. Theres our doctors response tomy reports from the Helen Beebee Clinic:Theyre probably worried about something

called pervasive developmental disorder[PDD], which isnt as bad as it soundsand may simply mean social aloofness or

eccentricity.

There are those parting remarks from Janeon her last day at the Helen Beebee Clinic:Hes tuning in more and more, and Im not

nearly as concerned as I was. But in case youneed it, heres the phone number for that psy-chiatrist specializing in deaf children.

Most maddeningly, there is Jason himselfat times so alert and engaged, always clever,and understanding more and more spokenwords; 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 iscleared and the appointment set up. Monthspass before the appointment day. Finally, theactual appointment, and again I expect to

learn something.He does have a problem, the psychiatrist

remarks, as she observes our 21/2-year-old son

crawling across her feet.

What is it? Is he autistic? Does he havePDD? I ask.

I dont like labelsshe replies.

We attend each successive appointmenthoping to learn more. But the psychiatristshines her psychotherapeutic stethoscope on

us rather than on Jason. As it turns out, it iswe, not she, who must serve as Jasons ther-apists. Its up to us to engage him and drawhim 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 insistswe explain things to him that we simply can-not communicate.

Jason, meanwhile, has become so wild

and unfocused that all of us who live andwork with him grow desperate for supportiveserviceswraparound aidsto 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 wouldnt tell us, weve sought it

out ourselves. Weve read and read. Weve

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learned all about the hodgepodge of symp-toms that constitute autism. We know thatJason shows enough of them to qualify as at

least mildly autistic. But only a professional

can make the official diagnosis it takes to getservices.

When our psychiatrist finally agrees to put

Jasons needs ahead of her distaste for labels,I hope she will include a prognosis and rec-ommendations for treatment. All autistic chil-

dren are different, and nothing weve read ad-dressed Jasons specific case. Surely, after allthese months, our psychiatrist, despite herlimited interaction with him, knows him well

enough to make some predictions. My hopesrise as I see just how long and comprehensiveis the questionnaire that she is now putting

us through. But her report, like that of theoccupational therapist, turns out to be lit-tle more than a digest of our responses anddescriptionsattached to the label PDD.

EI IN AUTISM

Like other parents of multiply handicapped

children dependent on sign language, wehave little choice besides Jasons signing-based EI program. But his combination ofdeafness and PDD prove a blessing in dis-guise. For the Pennsylvania School for the

Deaf surrounds him with socially typical class-mates sharing both his normal intelligenceand his one academic deficiencylanguage.

Pure autism would have relegated him to thePhiladelphia Public School System, to class-rooms of children with similar or more severemental and emotional challenges, few of them

intellectual peers or social role models.However, for all the creative initiative

of his great teacher and equally wonderful

wraparound aid, nothing in the formal class-room curriculum purports to address Jasonssevere deficits in social reasoning and relat-edness. Nothing, that is, until their conver-

sion to Stanley Greenspans Floor Timeanapproach intended for all children, but in par-

ticular for kids with autism and PDD.What looks serendipitous, however, is mis-

fortune in disguise. For Floor Time amountsto little more than child-centered interactive

play, with no detailed curriculum or explicitteaching. Gone is the classroom structure thathad seemed so beneficial; now the children

and teachers are mostly building things, work-

ing with clay and sand, dressing up, gettingout pots and pans in the toy kitchenallthings that Jason loved to do. But what does

he get out of this?In sign language as well as in speech,

Jason continues to be dogged by limited

comprehensionindeed he is turning outmore classically autistic than his PDD diagno-sis suggested. Most of the specific Floor Timeactivities Greenspan describes have parents

and teachers evoking imaginary scenes andengaging children and their toys in role-play;nowhere does he show how to raise the truly

autistic child to the requisite level of linguisticand emotional comprehension.

Instead he presupposes that any child canpick up language, however slowly, simply by

hearing others use it in conjunction with thechilds activities and emotions. But as thepsycholinguist, Paul Bloom, explains, this re-

quires the child to monitor what the speaker

is looking at and deduce his communicativeintent. In these skills, as studies confirm, autis-tic children fall far short. Many never acquire

the receptive vocabularies upon which mostof Greenspans specific suggestions depend.At school Jason remains linguistically and so-

cially adrift; at home we start teaching him ex-plicitly all the words, concepts, and phrasesfor which we can formalize lessons.

The most detailed curriculum for autism,

in vigorous competition with Floor Time, isApplied Behavioral Analysis (ABA)an inten-sive, one-on-one therapy that few EI programs

can afford. But even ABA fails to deliver. Mostof its lessons recapitulate in misleading de-tail the general protocol (the physical posi-tions of child and therapist, the modeled be-

havior, the prompted imitation, the fading ofthe prompt), but fail to show topic-specificways of actually eliciting the behavior or of

decoupling it from the prompt. Accomplish-

ing this is straightforward enough, perhaps,with physical imitation, object identification,and shape sorting, but not with pronouns, wh-

questions, and most other linguistic topics.

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ABA, thus, falls short exactly where FloorTime does: in receptive language.

In this key area, the few purported autism

curricula, even Greenspans latest Affect-

Based Language Curriculum, amount to lit-tle more than sketchy, schematic protocols.Nothing comes close to matching the speci-

fics of all those deaf EI materialsthe signlanguage lessons and textbooks; the detailedspeech curriculum of the Helen Beebee

Clinic.Worse, neither the structure of the EI pro-

grams nor the existing therapeutic protocolsreflect the many subtypes and learning styles

within autism, instead lumping kids togetherand making sweeping generalizations. A goodteacher will appreciate individual differences

and figure out how best to address them, justas she will wrack her brain and plan specificlessons with little outside guidance, but ade-quately meeting such heterogeneous needs is

nearly, if not wholly, impossible.Ideally, some well-connected expert would

solicit, compile, and disseminate the best of

the teachers and parents activities and les-

son plans. But, unlike EI in deafness, this isan arena dominated by psychiatry/psychologygurus rather than therapists. The competition

between the ABA and Floor Time camps, in-

stead of being a small distraction, infuses theirtherapeutic materials, keeping them vague,narrow, and guru-promoting instead of de-

tailed, workable, and child-focused. Like theircounterparts in deaf intervention, the vari-ous professional devotees are quick to judge

parents for pursuing what theyre sure is thewrong approach; unlike the deaf experts, theyfail to offer specific, practicable alternatives.

And so creating for autism intervention

what already exists for deafness is up to thoseof us who work hour after hour, directlyand intensively, with young autistic children.

Only we parents, teachers, and therapistscan address fully the tremendous diversity oftheir misunderstood and undertreated condi-tions. Only we, collectively, can create and

compile for these children something trulyworthy both of their specific needs andof that overused label of comprehensive

curriculum.

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