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Magazine

TheKidsWhoBeatAutism
ByRUTHPADAWER

JULY31,2014

Atfirst,everythingaboutL.'sbabyboyseemednormal.Hemeteverydevelopmentalmilestoneanddelighted
ineverydiscovery.Butataround12months,B.seemedtoregress,andbyage2,hehadfullyretreatedintohis
ownworld.Henolongermadeeyecontact,nolongerseemedtohear,nolongerseemedtounderstandthe
randomwordshesometimesspoke.Hiseasygoingmannergavewaytotantrumsandheadbanging.Hehad
beenthishappy,happylittleguy,L.said.Allofasudden,hewasjustfadingaway,fallingapart.Icanteven
describemysadness.Itwasunbearable.Morethananythingintheworld,L.wantedherwarmandexuberant
boyback.
Afewmonthslater,B.receivedadiagnosisofautism.Hisparentsweredevastated.Soonafter,L.attended
aconferenceinNewport,R.I.,filledwithautismclinicians,researchersandafewdesperateparents.Atlunch,
L.(whoaskedmetouseinitialstoprotecthersonsprivacy)satacrossfromawomannamedJackie,who
recountedthedisappearanceofherownboy.Shesaidthespeechtherapisthadwaveditoff,blamingear
infectionsandpredictingthatJackiesson,Matthew,wouldbefine.Shewaswrong.Withinmonths,Matthew
acknowledgednoone,notevenhisparents.ThelastwordhehadwasMama,andbythetimeJackiemetL.,
eventhatwasgone.
Inthemonthsandyearsthatfollowed,thetwowomenspenthoursonthephoneandateachothers
homesontheEastCoast,sharingtheirfearsandfrustrationsandswappingtreatmentideas,comfortedtobe
goingthrougheachstepwithsomeonewhoexperiencedthesameterrorandconfusion.WhenImetwiththem
inFebruary,theytoldmeaboutallthetreatmentstheyhadtriedinthe1990s:sensoryintegration,megadose
vitamins,therapeutichorsebackriding,aviletastingpowderfromapsychologistwhoclaimedthat
supplementstreatedautism.Noneofithelpedeitherboy.
Togetherthewomenconsideredappliedbehavioranalysis,orA.B.A.atherapy,muchdebatedatthe
time,thatbrokedowneveryquotidianactionintotiny,learnablesteps,acquiredthroughmemorizationand
endlessrepetitiontheyrejectedit,afraiditwouldturntheirsonsintorobots.ButjustbeforeB.turned3,L.
andherhusbandreadanewbookbyamotherclaimingthatsheusedA.B.A.onhertwochildrenandthatthey
recoveredfromautism.ThedayafterL.finishedit,shetriedtheexercisesinthebooksappendix:Givean
instruction,promptthechildtofollowit,rewardhimwhenhedoes.Clapyourhands,shedsaytoB.andthen
takehishandsinhersandclapthem.ThenshewouldticklehimorgivehimanM&Mandcheer,Goodboy!
Thoughshebarelyknewwhatshewasdoing,shesaid,hestillmadeamazingprogresscomparedwith
anythinghedgottenbefore.
ImpressedwithB.'simprovement,bothfamilieshiredA.B.A.specialistsfromtheUniversityofCalifornia,

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LosAngeles(whereA.B.A.wasdeveloped),forthreedaysoftraining.Thecostwasenormous,between
$10,000and$15,000,coveringnotonlythespecialistsfeesbutalsotheirairfareandhotelstays.The
specialistsspenthourswatchingeachboy,identifyinghisidiosyncrasiesandcreatingadetailedsetof
responsesforhisparentstouse.Thetrainersreturnedeverycoupleofmonthstoworkonanewphase,seeking
toteachtheboysnotjusthowtouselanguagebutalsohowtomodulatetheirvoices,howtoengagein
imaginativeplay,howtogestureandinterpretthegesturesofothers.Thefamiliesalsorecruitedandtrained
peopletoprovideA.B.A.totheirsons,soeachboyreceived35hoursaweekofoneononetherapy.
Thespecialiststaughttheparentsthatiftheirchildwantedsomething,theyshouldhandittohimbut
shouldnotletgountilhelookedatthem.Withinamonth,B.waslookingatpeoplewhenheaskedthemfor
something,havinglearneditwastheonlywaytogetwhathewanted.Withinfourmonths,hewaslookingat
peopleevenwhenhewasntsolicitinghelp.Soonhelearnedtopointtothingshedesired,askillthatrequired
weeksoflessons.OnceB.understoodthepowerofpointing,henolongerpulledhismothertotherefrigerator
andhowledtillshehappeneduponthefoodhewantednowhecouldpointtograpesandgetgrapes.Between
thetimehewasage1andalmost3,L.said,Irememberonlydarkness,onlyfear.ButassoonasIfiguredout
howtoteachhim,thedarknesslifted.Itwasthrilling.Icouldntwaittogetupeachmorningandteachhim
somethingnew.Itwasntworkatall.Itwasahuge,hugerelief.SoonB.begantouselanguageto
communicate,albeitinventivelyatfirst.OnetimewhenB.pointedtothegrapesinthefridge,L.tookthemout,
pluckedthemoffthestemandhandedthemtohimatwhichpointhestartedscreaming.Hethrewhimself
ontheground,flailinginmisery.L.wasbaffled.Hehadclearlypointedtothegrapes.Whathadshe
misunderstood?Whywerehistantrumssofrustratinglyarbitrary?
Suddenly,B.pleaded:Tree!Tree!Ithither:Hewantedthegrapesstillattachedtothestem.Hewanted
topullthemoffhimself!Itwaslike,Oh,mygod,howmanytimeshaveIthoughthistantrumswererandom,
whentheywerentrandomatall?Ifeltsobadforhim:Whatotherthingshaveyouwantedthatyoucouldnt
tellme?
Afterthat,B.'slanguageblossomedquickly.Bythetimehefinishedkindergarten,hewaschattyand
amiable,thoughheremainedsociallyawkward,hyperactiveandunyieldinglyobsessedwiththeanimal
kingdomhekneweverykindofdinosaur,everykindoffish.Whateverhispreoccupationofthemoment,he
wouldtalkaboutitincessantlytoanyonewhowould,orwouldnt,listen.L.madethreesmalllaminated
coupons,andeachmorning,shedtuckthemintoB.'sfrontpocketandremindhimthatwheneverhetalked
abouthisfavoriteanimalornoticedkidswalkingawayorchangingthesubject,heshouldmoveacoupontohis
otherpocket.Onceheranoutofcoupons,shetoldhim,hehadtofindotherthingstotalkaboutfortherestof
theday.Whetherbecauseofthecouponsormaturationorsomethingelse,B.'smonologuesstoppedbysecond
grade.Aroundthesametime,hisfixationseased.B.'sdoctorconcludedthatthelastvestigesofhisautismwere
gonehenolongermetthecriteria,eveninitsmildestform.
L.wasecstatic,butshewasalsoplaguedbyguilt.ThoughJackiessonreceivedthesametreatmentsasB.,
hehadmadenosuchprogress.Matthewstillcouldnottalk.Heremaineduninterestedinotherchildrenand
mosttoys.Anddespiteeffortstoteachhim,Matthewscommunicationremainedextremelylimited:Whenhe
squealedloudly,hewashappy.Whenhethrewupwhichforayearhediddailyhisparentsconcludedthat
hewasdistressed,afteradoctorassuredthemthattherewasntanythingphysicallywrongwithhim.
Jackiedideverythingforhim,L.toldme,hervoicefilledwithangst.Everything.Shetriedjustashard

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asIdid.Shehiredthesamepeople,didthesamework...."Hervoicetrailedoff.Shewassurethatthe
behavioraltherapyhadallowedhertoreclaimherson,butshecouldnotunderstandwhyithadnotdonethe
sameforMatthew.
Autismisconsideredalifelongdevelopmentaldisorder,butitsdiagnosisisbasedonaconstellationof
behavioralsymptomssocialdifficulties,fixatedinterests,obsessiveorrepetitiveactionsandunusually
intenseordulledreactionstosensorystimulationbecausenoreliablebiomarkersexist.Thoughthe
symptomsofautismfrequentlybecomelessseverebyadulthood,theconsensushasalwaysbeenthatitscore
symptomsremain.Mostdoctorshavelongdismissedaswishfulthinkingtheideathatsomeonecanrecover
fromautism.SupposedcureshavebeenpromotedontheInternetvitaminshots,nutritionalsupplements,
detoxifiers,specialdiets,pressurizedroomsfilledwithpureoxygenandevenchelation,thepotentially
dangerousremovalofheavymetalsfromthebody.Butnoevidenceindicatesthatanyofthemcanalleviateany
ofthecoresymptomsofautism,letaloneeradicateit.
Theideathatautisticpeoplecouldrecoverfirsttookholdin1987,afterO.IvarLovaas,thepioneerof
A.B.A.,publishedastudyinwhichheprovided19autisticpreschoolerswithmorethan40hoursaweekofone
ononeA.B.A.,usingitshighlystructuredregimenofprompts,rewardsandpunishmentstoreinforcecertain
behaviorsandextinguishothers.(Anequalnumberofchildren,acontrolgroup,received10orfewerhoursa
weekofA.B.A.)Lovaasclaimedthatnearlyhalfthechildrenreceivingthemorefrequenttreatmentrecovered
noneinthecontrolgroupdid.Hisstudywasgreetedwithskepticismbecauseofseveralmethodological
problems,includinghislowthresholdforrecoverycompletingfirstgradeinanormalclassroomand
displayingatleastanaverageI.Q.Thetherapyitselfwasalsocriticized,becauseitrelied,inpart,on
aversives:sharpnoises,slapsandevenelectricshocks.Bythe1990s,afterapublicoutcry,Lovaasandmost
ofhisfollowersabandonedaversives.
WhilesubsequentstudiesdidnotreproduceLovaassfindings,researchersdidfindthatearly,intensive
behavioraltherapycouldimprovelanguage,cognitionandsocialfunctioningatleastsomewhatinmostautistic
children,andalotinsome.Afewstudiesclaimedthatoccasionallychildrenactuallystoppedbeingautistic,but
thesewerewavedoff:Surely,eitherthechildreceivedamisdiagnosistobeginwithortherecoverywasntas
completeasclaimed.
Inthelast18months,however,tworesearchgroupshavereleasedrigorous,systematicstudies,providing
thebestevidenceyetthatinfactasmallbutreliablesubsetofchildrenreallydoovercomeautism.Thefirst,led
byDeborahFein,aclinicalneuropsychologistwhoteachesattheUniversityofConnecticut,lookedat34young
people,includingB.Sheconfirmedthatallhadearlymedicalrecordssolidlydocumentingautismandthatthey
nownolongermetautismscriteria,atrajectoryshecalledoptimaloutcome.Shecomparedthemwith44
youngpeoplewhostillhadautismandwereevaluatedashighfunctioning,aswellas34typicallydeveloping
peers.
InMay,anothersetofresearcherspublishedastudythattracked85childrenfromtheirautismdiagnosis
(atage2)fornearlytwodecadesandfoundthatabout9percentofthemnolongermetthecriteriaforthe
disorder.Theresearch,ledbyCatherineLord,arenownedleaderinthediagnosisandevaluationofautism
whodirectsalargeautismcenterandteachesatWeillCornellMedicalCollege,referredtothosewhowereno
longerautisticasverypositiveoutcome.

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Autismspecialistshailedthereports.Thoseofuswhoworkcloselywithchildrenwithautism,says
GeraldineDawson,apsychologistandresearcheratDukeUniversitysdepartmentofpsychiatryandthe
InstituteforBrainSciences,haveknownclinicallythatthereisthissubgroupofkidswhostartouthaving
autismandthen,throughthecourseofdevelopment,fullylosethosesymptomsandyetpeoplealways
questionedit.Thiswork,inaverycarefulandsystematicway,showsthesekidsexist.Shetoldmethatsheand
manyofhercolleaguesestimatedthat10percentormoreoftheirautisticpatientsnolongerhadsymptoms.
Thefindingscomeatatimewhenthenumberofautismcasesnationwideappearstobeclimbingrapidly.
Nonationallyrepresentativestudyofautismsprevalenceexists,buttheCentersforDiseaseControland
Preventionsmostrecentstudyof11communitiesintheUnitedStatesfoundthatonein68childrenhas
autism,upfromonein88twoyearsearlier.Expertsattributemuchofthatincreasetogreaterawarenessofthe
diseaseanditssymptoms,aswellastobroaderdiagnosticcriteria.Someresearcherssayadditionalfactors
amongthemtoxicsubstancesandolderparentalagemaycontributetotheriseaswell.Scientistssuspect
thatwhatiscalledautismmayactuallybeanarrayofdistinctconditionsthathavedifferentgeneticand
environmentaletiologiesbuthappentoproducesimilarsymptoms.Iftrue,itcouldhelpexplainwhysome
childrenprogresssomuchwhileothersdont.
TheresearchbyFeinandLorddoesnttrytodeterminewhatcausesautismorwhatexactlymakesitgo
awayonlythatitsometimesdisappears.Theredo,however,seemtobesomeclues,liketheroleofI.Q.:The
childreninLordsstudywhohadanonverbalI.Q.oflessthan70atage2allremainedautistic.Butamong
thosewithanonverbalI.Q.ofatleast70,onequartereventuallybecamenonautistic,eventhoughtheir
symptomsatdiagnosiswereassevereasthoseofchildrenwithacomparableI.Q.whoremainedautistic(Feins
study,bydesign,includedonlypeoplewithatleastanaverageI.Q.)Otherresearchhasshownthatautistic
childrenwithbettermotorskills,betterreceptivelanguageskillsandmorewillingnesstoimitateothersalso
tendtoprogressmoreswiftly,eveniftheydontstopbeingautistic.Sodochildrenwhomakestriking
improvementsearlyon,especiallyinthefirstyearoftreatmentperhapsasignthatsomethingabouttheir
brainsortheirkindofautismenablesthemtolearnmorereadily.Researchersalsosaythatparental
involvementactingasachildsadvocate,pushingforservices,workingwiththechildathomeseemsto
correlatewithmoreimprovementsinsymptoms.Financialresources,nodoubt,helptoo.
Fornow,though,thefindingsaresimplyhints.Ivebeenstudyingautistickidsfor40years,Feinsays,and
ImprettygoodatwhatIdo.ButIcantpredictwhoisgoingtogetbetterandwhosnotbasedonwhatthey
looklikewhenIfirstseethem.Infact,Inotonlycantpredictwhoisgoingtoturnoutwithoptimaloutcome,
butIcantevenpredictwhowillhavehighfunctioningautismandwhowillbelowfunctioning.Theresso
muchwestilldontunderstand.
MarkMacluskie,ananimated16yearold,isanotherofthechildreninFeinsstudywhonolongerhas
autism.Hespendshissparetimeplayingvideogames,buildingrobots,writingcomputercodeandhangingout
withfriendsatthelocalparknearhishomeinaPhoenixsuburb.HecohostsaweeklyInternetradioshow
calledTechTeam,whichhas32,000listeners.Ontheprogram,heandabuddyreviewapps,discusstech
news,tell(very)cornyjokesandproduceregularfeatureslikeGadgetonaBudget.
Whileheseemslikeafairlytypicalgeekyteenagernow,ittookyearsofhardworktogethere.Justbefore
heturned3,hereceivedadiagnosisofmediumtosevereautism.Heshowednoapparentinterestinthose
aroundhimandseemedtounderstandfewwords.Hethrewstunningtantrums.Andevenwhenhedidntseem

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angry,hewouldrunheadlongintowallsandfallover,thengetupanddoitagain,likearobotprogrammedto
repeatthesamepatterneternally,seeminglyimpervioustopaindespitethebruisesspreadingacrosshis
forehead.
Marksparents,CynthiaandKevin,senthimtotheirdistrictspreschoolfordevelopmentallydelayed
children,wherehewasplacedinthehighestfunctioningclass.Butheonlygotworse,havingmorefitsand
losingevenmorelanguage.Withinafewmonths,hewasmovedtothelowestfunctioningclass.Cynthiasaida
neurologisttoldhertobepreparedtosomedayinstitutionalizeheronlychild.
Indesperation,theMacluskiespulledMarkfromschool.Theytookouta$100,000secondmortgageso
CynthiacouldquitherjobinhumanresourcestoworkfulltimewithMark,eventhoughshewastheprimary
breadwinner.ShescouredtheInternetforguidanceandvowedtotrywhatevermightpossiblywork,aslongas
itdidntsounddangerous.ShegavehersonshotsofvitaminB12andstartedhimonadairyfree,glutenfree
andsoyfreediet.Shereadbooksonvariousbehavioraltherapies,choosingwhatshelikedandthentraining
herself,becausethefamilycouldntaffordtohireprofessionals.Intheend,Cynthiacobbledtogethera40
hourperweekbehavioralprogram,ontopofthefivehoursaweekofspeechandoccupationaltherapythatthe
stateprovided.
Theyweredifficultyears.Earlyon,Markwouldhurleggsatthewallandpourmilkonthefloor,sothe
Macluskiespadlockedtherefrigeratorwithaheavychain.Theyemptiedtheirlivingroomoffurniture,
replacingitwithaninflatabletrampolineencircledbyrubberwallssothatMarkcouldwhapagainstthemto
getthesensoryinputheseemedtoneedwithouthurtinghimself.TheymadecleartoMarkthatifhewanted
somethingtoeatordrink,hewouldgetitonlyifheconveyedhisdesiresbyusingwordsorsignlanguageor
pointingtotherelevantflashcard.
CynthiadecidedtokeephomeschoolingMark,havingconcludedthattraditionalschoolwouldnt
sufficientlyaddresshisweaknessesorrecognizehisstrengths.Bythetimeheturned8,hisspeechandbehavior
wereonparwithpeers,buthissocialthinkingremainedclassicallyautistic.Isortofknewtherewererules,
butIjustcouldntrememberwhatthoseruleswere,hetoldmerecentlybyvideochat.Itwashardto
rememberwhatyouresupposedtodoandwhatyourenotsupposedtodowhenyoureinteractingwith
people.Herarelynoticedsocialcues,andhecouldntinterpretthemwhenhedid.Hewastoorough,too
tactile,tooquicktointrudeintootherpeoplespersonalspace.
Cynthiasetouttoaddresshissocialdelays.ShewatchedDVRrecordingsofLeaveIttoBeaverwith
Mark,stoppingeveryfewminutestoaskhimtopredictwhatmighthappennext,orwhathethoughtBeaver
wasthinking,orwhyJunereactedthewayshedid.Whentheyhadwatchedeveryepisode,theymovedonto
LittleHouseonthePrairiesoMarkcouldpracticereadingfacialexpressions.Irememberitbeinghardto
answermymomsquestionsandbeingconfusedwhenIwatchedthoseshows.Iknewshewasdoingallthose
thingsforareason,hesaidappreciatively.Ijustdidntknowhowitwasgoingtohelp.
Atparksandrestaurants,theywatchedthefacesofpassersbyandplayedsocialdetective,withCynthia
askingMarktofindcluestopeoplesrelationshipsoremotions.Hedidntseemtolearnthatstuffthrough
osmosislikeotherkidsdo,soIdhavetowalkhimthroughiteachtimetillhegotit.
Aroundthattime,hisparentsgavehimarobotkitforChristmas,andhefellmadlyinlovewithit.Eagerto
findopportunitiesforMarktopracticesocializing,Cynthiaformedarobotclub:Markandfourtypically

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developingchildren,meetingintheMacluskieslivingroomtwoafternoonsaweek.Atfirsttheyjustbuilt
robots,butsoonthefivechildrenbeganwritingprogrammingcodeandenteringcompetitions.Twoyearsago,
Markmadeittotheroboticsworldcompetition.Therehewaspartneredrandomlywithteenagersfrom
Singaporeandhadtostrategizewiththemonthefly.Theywonseveralrounds.Bythen,ithadbeenthreeyears
sinceaspecialistconcludedthatdespitesomelingeringsocialdeficits,Marknolongermetthecriteriafor
autism.AsCynthiawatchedhowwellMarkworkedwithhisteammatesatthatcompetition,shebegansobbing
sohardthatshehadtoleavetheauditorium.
Markisalsoawareofhowfarhehascome.Theresnothingwrongwithbeingautistic,butmylifeismuch
easiernothavingit,hesaid.ForaslongasIcanremember,IveknownIwasautistic,butIneverfeltautistic.
Ijustfeltlikeme.ThatsallIknewhowtofeel.
Feinsstudyfoundthatformerlyautisticpeopleoftenhaveresidualsymptoms,atleastinitiallythese
includesocialawkwardness,attentiondeficithyperactivitydisorder,repetitivemovement,mildperseverative
interestsandsubtledifficultiesinexplainingcauseandeffect.ForMark,themainremnantishiscontinued
disgustatfoodthatheconsidersslimy,likeomelets,andhisdislikeforthetextureofpaper,whichheavoids.
HismothersaysthatwhenevershementionsthatMarkoncehadautism,peoplelookatherasifshes
delusional.Evendoctorssay,Well,hemusthavebeenmisdiagnosed,becauseapersoncantstophaving
autism,shesaid.Itssofrustrating.Markworkedsohard.Todenyeverythinghedidtogetthisfarisntfair.
Noonehasfiguredoutwhathappensinsidethebrainsofpeoplewhohadautismbutnolongerdo
whether,forexample,theirbrainsweredifferentfromthoseofotherautisticchildrentobeginwith,orwhether
theirbrainsweresimilarbutthenchangedbecauseoftreatment.Butrecentresearchonautistictoddlersby
GeraldineDawsonofDukerevealsjusthowmalleabletheautisticbraincanbe.Priorstudiesdeterminedthat
autisticchildrenshowmorebrainengagementwhentheylookatcolorphotosoftoysthanatcolorphotosof
womensfacesevenifthephotoisofthechildsmother.Typicallydevelopingchildrenshowthereverse,and
thepartsoftheirbrainresponsibleforlanguageandsocialinteractionaremoredevelopedthanthoseof
autisticchildren.
Dawsonwonderedwhethersteeringautisticchildrensattentiontovoices,gesturesandfacialexpressions
couldaltertheirbraindevelopment.Soinarandomizedclinicaltrialpublishedin2012,shetrackedtwogroups
ofautistictoddlers:onethatreceived25hoursaweekofabehavioraltherapydesignedtoincreasesocial
engagement,andacontrolgroupthatreceivedwhatevertreatmentstheircommunityoffered(somebehavioral,
somenot).Aftertwoyears,electroencephalogramsshowedthatbrainactivityinthecontrolgroupstillstrongly
favorednonsocialstimuli,buttheEEGsofthesocialengagementgroupwerenowsimilartothoseoftypically
developingchildren.Itappearedthattheirbrainshad,infact,changed.Thoughthechildrenwerestillautistic,
theirI.Q.shadalsoincreasedandtheirlanguage,socialengagementanddailylivingskillshadimproved,while
thechildreninthecontrolgrouphadprogressednoticeablyless.
Howthisrelatestopeoplewhoarenolongerautisticisnotentirelyclear.Thoughmanystudiesshowthat
earlyintensivebehavioraltherapysignificantlyeasesautismsymptoms,mostchildrenwhoreceivesuch
therapyneverthelessremainautisticandsomewhodontgetitneverthelessstopbeingautistic.Onlytwoof
theeightnolongerautisticchildreninLordsstudyreceivedintensivebehavioraltherapy,becauseatthetime
itwasntcommonlyavailablewheretheresearchwasconducted,inIllinoisandNorthCarolina.

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InFeinsstudy,childrenwholostthediagnosisweretwiceaslikelytohavereceivedbehavioraltherapyas
thosewhoremainedautistictheyalsobegantherapyatayoungerageandreceivedmorehoursofiteachweek.
ButroughlyonequarterofFeinsformerlyautisticparticipantsdidnotgetanybehavioraltherapy,includinga
boynamedMattTremblay.Receivinganautismdiagnosisat2,Mattreceivedspeech,occupationaland
physicaltherapyuntilhewas7or8.Buthewasntgivenbehavioraltherapybecause,hismotherrecalls,the
pediatricianneversuggesteditandtheschoolsintheirtowninupstateNewYorkdidntprovideit.
Mattsspeechwasthefirstthingtoimprove,butmanyofautismstelltalesignspersisted.Heremained
obsessedwithprecisionandorder.Hementallykepttrackoftheschedulesandappointmentsforallfive
membersofhisfamily,knowingwhohadtobewhereatwhattime.Hedevencalculateexactlywheneachof
ushadtoleavethehouse,andhedannounce,Wehavethreeminutesbeforewemustleave,hismother,
Laurie,toldme.
Cognitiveandbehavioralgainscamenext,butmasteringsocialskillswasalong,difficultprocess,asitis
formostautisticchildren.Untilwellintomiddleschool,Matttendedtoblurtoutwhateverhewasthinking,
andittookhimawhiletoputtogetherthemechanicsofconversation.IrememberwhenIwaslittlethatIhad
ahardtimepronouncingthings,Mattsaid,andIrememberitbeingfrustrating.Itwashardtomakemy
mouthlistentomybrain.AndIrememberthatupuntilsixthgrade,Ididntreallyknowhowtofitin,howto
connect.Iwasafraidtotalktopeople.IputmyheaddownwhenIwasinthehallatschool,walkingtoclassor
goinghome.IcouldntrelatetootherkidsormaybeIjustdidntwantto.Iguessitwasabitofboth.
Afterawhile,Mattbegantofigureoutsocialsituations.IthinkIwasinseventhoreighthgradewhenI
finallyrealizedIwassupposedtokeepontopic,hesaid.AndInoticedthatwhenIdidthat,Istartedtomake
morefriends.Ireallydontknowwhyitfinallyclickedformethen.BythetimeMattfinishedeighthgrade,his
doctorsaidhenolongerhadautism.
Thesedays,Mattisaffable,conversationalandfunny,arisingseniorinhighschool.Duringtheschool
year,heplaystrumpetinthebandandtennisonthevarsityteam,worksasacashier,busboyandbakery
stockeratPaneraBreadfor15to20hoursaweekandstillmanagestogetgoodgrades.Helovestohangout
withfamilyandfriends.Hisbedroom,whichhekeptfanaticallyneatuntiladolescence,isnowanuttermess
ashiftthathismotherjokesmightbeconsideredasignofteenagenormalcy,thoughnotonesheparticularly
welcomes.
Mattremembersafewthingsaboutbeinganautisticpreschooler,likehowheusedtoflapandrock.He
remembershisfixationwiththeLittlePeopleSchoolBusandthecalm,deepfocushefeltwhenhedrovethetoy
aroundandaroundthekitchenforhours,droppingLittlePeopleoffalloverthefloor,thenpickingthemup
again.Mildechoesfromhisautisticdaysremain.Hetoldmethathestillcantstandwearingtightorstiff
clothes,soheoptsforsweatpantsorloosekhakisinsteadofjeans.Andeventhoughhesajokesterhimself,by
hisownreckoninghestilloccasionallyhasdifficultyfiguringoutwhensomeoneelseiskidding.Ithinkhestill
sometimesinterpretsthingsmoreliterallythanotherpeopledo,saidhismother,apediatricnurse.Maybe
thatsbecausehehadtolearnhowtoreadpeoplesemotions,facialexpressionsandmannerisms,whereother
kidsjustknow,justlearneditautomatically.
WhenMattisbyhimselfwatchinganexcitinggameonTV,Lauriesometimespassesbyandseeshimflap
hishands.Itjustseemslikealeftoverfromtheautism,oneheeasilycontrols,shesaid.Later,Imentioned

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thattoMattandaskedwhathewasfeelingwhenheflapped.Hewasstunnedtohearhismothersassessment.
Wow,IthoughtIstoppeddoingthatat13or14!Mattinsistedthathismotherwasmisinterpretinghis
gestures.Thatsjustmebeingintosports,beinglike,Yeah!likeanybodywouldiftheirteamscoredagoal.
Somepeoplerejecttheideathateliminatingautismistheoptimaloutcome.Autismisntanillnessin
needofacure,saysAriNeeman,thepresidentoftheAutisticSelfAdvocacyNetwork,anationalgrouprunby
andforautisticadults.Hesaysthatitsimportanttorememberthattheparticularqualitiesofautisticpeople,
whichmayseemstrangetotherestoftheworld,areactuallyvaluableandpartoftheiridentity.Temple
Grandin,forexample,anauthorandanimalscientist,creditsherautismforherremarkablevisualspatialskills
andherintensefocusondetail,whichallowedhertodesignherrenownedhumaneslaughterfacilitiesfor
livestock.
Neemanandothersstronglysupporttreatmentsthatimprovecommunicationandhelppeopledevelop
cognitive,socialandindependentlivingskills.Buttheydeeplyresentthefocusonerasingautismaltogether.
Whyisnolongerbeingautisticmoreofanoptimaloutcomethanbeinganautisticpersonwholives
independently,hasfriendsandajobandisacontributingmemberofsociety?Whywouldsomeoneshand
flappingorlackofeyecontactbemoreimportantinthealgorithmofoptimalthanthefactthattheycan
programacomputer,solvevexingmathquestionsorcomposearrestingmusic?Whatproofistherethatthose
wholosethediagnosisareanymoresuccessfulorhappythanthosewhoremainautistic?
Wedontthinkitispossibletofundamentallyrewireourbrainstochangethewaywethinkandinteract
withtheworld,Neemansays.Butevenifsuchathingwerepossible,wedontthinkitwouldbeethical.He
andothersarguethatautismisakintohomosexualityorlefthandedness:adifferencebutnotadeficiencyor
somethingpathological.Itsaviewthatwasmemorablyarticulatedin1993whenamannamedJimSinclair
wroteanopenlettertoparentsofautisticchildren,ignitingwhatwouldcometobeknownasthe
neurodiversitymovement.Autism,Sinclairwrote,colorseveryexperience,everysensation,perception,
thought,emotionandencounter,everyaspectofexistence.Itisnotpossibletoseparatetheautismfromthe
personandifitwerepossible,thepersonyoudhaveleftwouldnotbethesamepersonyoustartedwith....
Therefore,whenparentssay,Iwishmychilddidnothaveautism,whattheyrereallysayingis,Iwishthe
autisticchildIhavedidnotexistandIhadadifferent(nonautistic)childinstead....Thisiswhatwehear
whenyouprayforacure.
Neemansayssocietysefforttosquelchautismparallelsitshistoricalefforttosuppresshomosexuality
andisequallydetrimental.Hepointsoutthatinthe1960sand70s,LovaassteamusedA.B.A.onboyswith
deviantsexrolebehaviors,includinga4yearoldboywhomLovaascalledKraig,withaswishygaitandan
aversiontomasculineactivities.Lovaasrewardedmasculinebehaviorandpunishedfemininebehavior.
Heconsideredthetreatmentasuccesswhentheboylookedindistinguishablefromhispeers.Yearslater,
Kraigcameoutasgay,andat38hecommittedsuicidehisfamilyblamedthetreatment.
Neurodiversityactivistsaretroubledbytheaspectsofbehavioraltherapythattheythinkaredesignedless
forthewellbeingofautisticpeopleandmoreforthecomfortofothers.Autisticchildrenareoftenrewardedfor
usingquiethandsinsteadofflapping,inpartsothattheywillnotseemodd,aprioritythatactivistsfind
offensive.Neemanofferedanotherexample:Eyecontactisananxietyinducingexperienceforus,so
suppressingournaturalinclinationnottolooksomeoneintheeyetakesenergythatmightotherwisegotoward
thinkingmorecriticallyaboutwhatthatpersonmaybetryingtocommunicate.Wehaveasayingthatspretty

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commonamongautisticyoungpeople:IcaneitherlooklikeImpayingattentionorIcanactuallypay
attention.Unfortunately,alotofpeopletellusthatlookinglikeyourepayingattentionismoreimportantthan
actuallypayingattention.
Indeed,Neemanarguesthatjustasgaypeoplecuredofhomosexualityaresimplyhidingtheirrealself,
peopledeemednolongerautistichavesimplybecomequitegoodatpassing,anillusionthatcomesatapsychic
cost.Autismactivistspointout,forexample,thatonefifthoftheoptimaloutcomeparticipantsinFeinsstudy
showedsignsofinhibition,anxiety,depression,inattentionandimpulsivity,embarrassmentorhostility.
Feinquestionsthisinterpretation.Sheacknowledgesthatpeoplewhostopbeingautisticarestill
vulnerabletothepsychiatricdifficultiesthatcommonlycoexistwithautism.Nevertheless,optimaloutcome
participantsweremuchlesslikelythanhighfunctioningautisticpeopletouseantidepressants,antianxiety
drugsorantipsychotics,Feinfoundinasubsequentstudy.Lordsstudylikewisefoundthatformerlyautistic
subjectshadfarfewerpsychiatricproblemsthanautisticsubjectsofcomparableI.Q.
Ofcourse,noneofthismeansthatpeoplewhohaveautismshouldbepressedtobecomenonautistic,or
changehowtheyrelatetotheworldsimplybecausetheirinteractionsarenttypical.Still,nowthatitsclear
somepeoplereallydoshedautism,itshardtoimaginethatparentswontbeevenmorehopefulthattheir
childsautismmightonedaydisappear.
CarmineDiFlorioisanotheroftheoptimaloutcometeenagersinFeinsstudy.Asatoddler,heseemed
tohearnothing,evenwhenhismotherintentionallydroppedheavybooksnexttohiminthehopesofgettinga
reaction.Instead,heappearedimmersedinaninteriorworld,flappinghisarmsasiftryingtotakeflight,
jumpingupanddownandholleringnehhhoverandover.Hedidnot,however,seemunhappy.
AfterCarminereceivedanautismdiagnosisatage2,hishometownincentralNewJerseyprovidedhim
withthreehoursaweekoftherapy,andhisparents,whorunaconstructionbusiness,paidforfourmore.Ina
videoofasession,atherapistshowsCarminepicturesofcommonobjectsandtriestoteachhimvocabulary.
Sheshowshimapictureofaglassofmilk.Hisgazewanders.Togethisattention,shetapshisknee,callshis
nameandwigglesthephotoinfrontofhim.Helookspasther.Mmmilkkkk,sheenunciatesslowly.Shesticks
thephotorightuptohisfaceandturnshischintowardherwithherfinger.Whenthatdoesntwork,she
coaxes:Payattention!Milk!Sheclutcheshisheadandswivelsittofaceher.Ook,heoffers,andshe
responds:Goodtry!Milk!Later,shetriestogethimtopracticefollowingsimpledirections.Dothis,she
saysasshepatsherthighs.Hedoesnothingforamoment,butthenraiseshishandsanddropstheminhislap.
Itscloseenough:Yay!thetherapistexclaims.Whatagoodboy!Shetickleshim,andhesquealsinglee.
Insessionswithanothertherapist,Carminerockswhenhedoesntwanttodotheexercises.Orhepumps
hisbodyupanddown.Sometimeswhenheflapshishandswhichhedoesfrequentlyinthosesessions,
wheneverhesexcited,frustrated,confusedorengagedthetherapistholdsthemdown.Itsuncomfortableto
watch.Theprevailingviewatthetimewasthatrepetitivemovementsshouldbeextinguished,forfearthatthey
wouldpreoccupythechildandrepelpeers.(Itsstillacommonview,thoughinsteadofrestrainingchildren,
manycliniciansredirectthem.Someignoreflappingifitdoesntimpedethechildsengagementwithother
things.)
Carminelearnedmuchmorequicklyoncehestartedattendingafulltime,yearroundpreschoolfor
childrenwithdevelopmentaldelays,wherehereceivedintensivebehavioraltherapythroughouttheday.When

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Carminewasamonthshyof5,histeacherssenthomeadetailedperformancereportbasedonamultitudeof
tests.Itrevealedthathiscommunication,behavior,sensory,social,dailylivingandfinemotorskillswereon
parwiththoseofatypicallydevelopingchild.Onlyhisgrossmotorskillsweredelayed.Theotherconcernthe
schoolnotedwashisflappingandjumpingwhenhewasexcitedforthat,teachersdirectedhimtoamore
appropriatewayofexpressingexcitement,suchasclappinghishandsorgivinghighfives.Bythesummer
beforehestartedkindergarten,theneurologistwhogaveCarminehisdiagnosiswasshocked,anddeclaredhis
autisticcharacteristicsessentiallygone.
Carminedoesntrecallallthoseeffortstogethimtoquitflapping.AndIdontrememberwhyexcitement
translatedintoflappingmyarms,headded.ButIdefinitelydoremembertheexcitement.Healsorecallshis
kidsisterteasinghimaboutflappingwhenhewas6or7,andheremembersdecidingthentotrytocontrolthe
impulse.Ittookyears.WhenIwantedtoflap,Idputmyhandsinmypockets.IthinkIcameupwiththaton
myown.Itwasfrustratingforthosetwoyears.Itwaslikesmilingandthensomeonetellingyouthatyou
shouldntsmile,thatsmilingwaswrong.Rememberingtoputmyhandsinmypocketsmademelessexcited
becauseIhadtothinkaboutitsomuch.Butastimegoeson,yougetinthehabit.SobythetimeIwas10or11,
Iwasntevenfeelingtheurgetoflap.
ItshardtosquaretheCarmineIsawonthoseearlyvideoswiththe19yearoldImetafewmonthsago.
Today,Carmineissunnyandgregarioustheresnothingidiosyncraticabouthiseyecontact,gesturesorways
ofinteracting.Inthefall,hellbeasophomoreattheBerkleeCollegeofMusicinBoston.Hesayshelovesthe
friendshesmade,theclasseshestakenandthefreedomoflivingindependently.
Iaskedhimiftherewasanythinghemissedaboutbeingautistic.Imisstheexcitement,hesaid.WhenI
waslittle,prettyoftenIwasthehappiestapersoncouldbe.Itwastheultimatejoy,thisrushinyourentire
body,andyoucantcontainit.ThatwentawaywhenmysisterstartedteasingmeandIrealizedflappingwasnt
reallyacceptable.ListeningtoreallygoodmusicisthemaintimeIfeelthatjoynow.Istillfeelitinmywhole
body,butIdontoutwardlyreacttoitlikeIusedto.
Carminesmother,CarolMigliaccio,toldmethatwatchinghimimproveduringthoseearlyyearswas
thrilling,butshebecamepainfullyawareofhowunusualhisexperiencewas.Atfirst,whenCarminemadeswift
progressathispreschool,hisparentsgushedpublicly.Wewerelike:Oh,mygod!Hesharedthecake!Hes
talking!Hesdoingbetter!Carolsaid.Buttheyquicklyrealizedthatmostofhisschoolmateswere
progressingfarmoreslowly.Ihadthatguilt,Carolsaid.Hewasjustclimbingmountains,andtheothers
werent.Havingallsevenkidsinaroomwiththesameteachers,youcouldseewhowasstillspinningintheir
ownworld,whowasstillnottalking.Youjustfeelbad.Theothermothersaskyou,WhatareyoudoingthatI
haventdone?Andyouhavenothingtotellthem.
Formanyparents,itissurelytemptingtoscrutinizethenewstudiesforhiddencluesoraformulafor
howtoundoautism.Butmanymysteriesstillremainaboutautismstrajectory,andresearchersurgeparentsto
keeptheresultsinperspective.Iseealotofparentsof2yearolds,CatherineLordsays,whohaveheard
storiesaboutkidsgrowingoutofautism,andtheytellus,Iwantmykidtobeoneofthosekids.Shereminds
themthatonlyaminorityofchildrenlosetheirsymptoms,andshecounselsparentstofocusinsteadon
helpingtheirchildreachhisorherpotential,whateveritis,insteadoffeelingthatnothingshortofrecoveryis
acceptable.Whenyougettoofocusedongettingtoperfect,youcanreallyhurtyourchild.Atypicalkidfights
backagainstthatkindofpressure,butakidwithautismmightnot.Itsfinetohopeitsgoodtohopebut

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dontconcentratesomuchonthathopethatyoudontseethechildinfrontofyou.
Negotiatinghowbesttoraiseachildwithautismoronewhonolongerhasitisclearlycomplicated.
ForL.andherhusband,thatinvolveddecidingtomoveonceB.hadmadesignificantprogress.Thesummer
afterkindergarten,thefamilysettledintoanewschooldistrict.Wemovedsonoonewouldknow,sopeople
wouldapproachhimwithanopenmind,L.said.Wedidnteventellhisteachersatthenewschool.Infact,
L.andherhusbanddidnteventellB.abouthisautismuntilhewas12or13.Whentheydid,hewasshocked
deadquietandshaken.L.saidheasked,Whydidntyouevertellmethis?L.said,Ididntthinkyouwere
readytohearit.Heresponded,IdontthinkImreadytohearitnow.
B.isinhisearly20sandrecentlygraduatedfromaselectuniversity.L.toldmethatalthoughhebattled
A.D.H.D.andoccasionalsocialanxiety,hegotgoodgrades,studiedabroad,hadgoodfriendsandagirlfriend.
Hemajoredinpsychology,focusingonitspotentialtochangepeopleslives.
B.'spastisasecretthatheandhisfamilystillkeep,evenfromclosefriends.L.isafraidpeoplewillbe
disturbedbytheideathatB.wasonceautisticorwillthinkthefamilyisexaggeratinghispast.L.sayssheand
herhusbanddontbringupautismwithB.,becausetheyfearitmightupsethimwhichiswhyL.refusedto
askB.ifhedtalkwithmeandinsistedthatInotaskhimmyself.ButsometimesB.bringsupautismwithhis
parents.Usuallyheaskswhathewaslikewhenhewasautistic,butrecentlyheaskedhismotheradifferent
question:Wasithorribleforyou?L.toldmeshepaused,tryingtofigureouthowtobehonestwithout
upsettinghim.Itoldhimthatitwasreally,reallyscary.Butthehardtimeswereshortlived,becausehe
respondedsoquicklyandsowelloncewefiguredoutwhattodo.Wevetoldhimmanytimesthatsofewpeople
havethatoutcomeandthathesoneoftheluckyones.
Jackiesson,Matthew,now24,hasnothadthatconversationwithhisparents.Infact,hebarelyhas
conversationsatall.Atthegrouphomewherehenowlives,nearahorsefarmintheBerkshires,thestaffcan
generallyinterpretthesoundshemakes.SometimeshetypescluesontheiPodTouchhisparentsgavehim,
becausehelongagolearnedtospellthethingsthatmattertohim.Butmostlyheseemsabsorbedbyhis
interiorlife.Heiscalmedbytheroutinesthere,includinghisassignedchoreofbrushingthehorses,even
thoughhedoesthatforonlyafewsecondsbeforehewandersaway.Everyday,thecaregiverstakehimtoswim
inanindoorpool,wherehesquealsinapiercinglyhighpitchofdelight.Intheevenings,heishappiest
watchingDisneyvideosandcrooningalonginasortofindistinctwarbling.Thewordshedoespronounce
clearlyareMamaandDaddy.
Hisparentsseehimmostweekends.Duringthosevisits,Matthewsometimesgetswiggly,whichcanbea
signalthathewantssomethinghedoesnthave.Jackiewillsay,Showme,andhandhimhersmartphone,
andMatthewwilltypeatext.Sheshowedmesomeofhisrecentmessages:Eatlunch.Chickennuggets.Fries.
Ketchup.Brownie.Icecream.Cookies.AndPeterPan.Watchatape.Tocommunicatewithher,hedoesnt
askforherphone,orpointtoit,orreachtowardit,ormimetexting.Hedoesntseemtounderstandthatthose
arewaystoexpresshiswishes,despite20yearsofefforttoteachhimso.
TheideathatMatthewwontrecovernolongerpainsJackie.Atsomepoint,shetoldme,Irealizedhe
wasnevergoingtobenormal.Heshisownnormal.AndIrealizedMatthewsautismwasnttheenemyits
whatheis.Ihadtomakepeacewiththat.IfMatthewwasstillunhappy,Idstillbefighting.Butheshappy.
Frankly,heshappierthanalotoftypicallydevelopingkidshisage.Andwegetalotofjoyfromhim.Hesvery

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cuddly.Hegivesusendlesskisses.Iconsiderallthatavictory.
RuthPadawerisacontributingwriterforthemagazinesheteachesattheColumbiaUniversityGraduateSchoolof
Journalism.
Editor:IlenaSilverman

AversionofthisarticleappearsinprintonAugust3,2014,onpageMM20oftheSundayMagazinewiththeheadline:TheRecovered.

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