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TheheadlinesreadNewstudysuggestsautismcanbeoutgrown,or
outgrowingautism:adoctorssurpriseandwonder.Thestoriesare
basedonstudiesreportingthat79%ofchildrenwithadocumented
earlyautisticsyndromedisorder(ASD)havenosymptomsofthe
disorderonfollowuplaterinchildhoodoradolescence.Thatisgood
news.Thequestionishowtoaccountforit.
Isitpossibletosimplyoutgrowautism?Wastheinitialdiagnosis
wrong?Didsomeinterventionswork?Ormighttherebeother
explanationsforthiswelcomenews?
"InanearliercolumntitledOops.Whenautismisntautistic
disorder,Ioutlinedthreetypesofhyperlexia,orprecociousreading
ability,whichissometimesanelementofadiagnosisofASD.Type1are
neurotypicalchildrenwhosimplyreadwayaheadoftheirchronological
age.Listeningtoa4yearoldreadingbookstohisorhernurseryschool
classmatesisastartlingexperience.
Type2arechildreninwhichintensefascinationwithlettersand
numbers,alongwithearlyreadingandremarkablememoryrepresent
splinterskillsasapartofautisticsyndromedisorder(ASD)
Type3arechildrenwholikewiseshowintensefascinationand
preoccupationwithnumbersandlettersveryearly,alongwith
precociousreadingskillsandremarkablememory.Theydohave
autisticlikesymptomsorbehaviorsbutthosedisappearovertimeas
thechildgetsolder.Theoutcomeinthesechildrenismuchmore
positivethanthosewithASDtotheirbenefitandthegreatreliefoftheir
parents.
FollowingtheOopsarticleIreceivednumerousreportsfromparents
whoidentifiedwithhyperlexia3.Youjustdescribedmychild,the
puzzled,andrelievedparentswouldwriteastheyreadthecase
examplesinmyWisconsinMedicalJournalarticleinDecember,2011.I
reviewedthosereportsandrecentlydidananalysisof165ofthemwith
thefollowingfindings:
Inallthecasestherehadbeenaconfusingjourneyofvarious
diagnoses,sometimesASD/Aspergersoritsvariants,orelseawide
rangeofothersfromhyperactivitytoanxietydisordertospeech
delay.
Ageofonsetofhyperlexiaskillswas24.6months
Ageoffirstprofessionalcontactwas44months
Certainfeaturescaughttheparentsattentioninthehyperlexia3
groupasbeingdifferentfromautismasusuallydescribed.For
exampletheirchilddemonstratedlesswithdrawal,moreeyecontact,
theabilitytoseekandgiveaffectionandingeneraloverallincreased
socialproficiency.
Additionallywhilesomeautisticlikebehaviorswerepresentsuch
asrepetitivebehaviors,insistenceonsameness,occasional
stimming,echolaliaandincreasedsensorysensitivity,those
symptomsdisappearedasthechildgrewolder
11casesthatmentionedadultoutcomesindicated9personswere
attendingcollegeandhavingsuccessful,independentlives.They
continuedtobeexceptionalreaderswhichhelpedtheircollegiate
performanceandaidedtheircareers.2casesweredescribedas
needingsupervisionbecauseofcontinuedautisticcharacteristics
HavinganASDdiagnosisappliedtotheirchildatanypointwasa
sourceofgreatdistressforallparents.
Itisimpossible,ofcourse,tomakeadiagnosisofthechildbasedonly
onparentdescription.Butfromreadingthosereports,manyofthem
verydetailed,therewasaclearimpressionthatinsomecasesthe
hyperlexiawasindeedasplinterskillmanifestationofautism
spectrumdisorder(hyperlexia2).Butinmanyothers,theincreased
socialproficiencyparticularly,anddisappearanceofmanyautistic
likesymptomsalongwithmorepositiveoutcomessuggested
placementinaseparate,hyperlexia3group.
Inallofmedicinethefirststepintreatmentistomakethecorrect
diagnosis.Theonlywaytodothatiswithaninpersoncomprehensive
evaluationbyamultidisciplinaryteam,includingdevelopmental
specialists,neuropsychologists,andspeech,languageandoccupational
therapists,tonamesome.Thatwillbethefollowuptothispresent
study.
Inthemeantime,unfortunately,therecontinuestobeamisconception
intheliteratureandontheinternet,thathyperlexiaisalwayspartof
autismspectrumcondition.Thatsamemisconceptionappliesto
childrenwhospeaklate(Einsteinsyndrome),asvividlypointedoutin
StephenCamaratasbookLateTalkingChildren:ASymptomora
Stage?Hisexperiencewithchildrenwhospeaklatemirrorsmy
experiencewithchildrenwhoreadearly.
Whileearlydiagnosisandinterventionistobeapplaudedforchildren
withdevelopmentalissuesofallsorts,cautioniswarrantedwhen
applyinganASDdiagnosistochildrenwhoreadearlyorspeaklate,and
atleastadifferentialdiagnosisbythosefamiliarwithhyperlexiaor
Einsteinsyndromeshouldbeuseduntilthenaturalhistoryofthe
disorderreveals,finally,itstruenature.
Whenachildexhibitshyperlexia2or3,thesameinterventiontoolsare
usedtodealwiththeautistic,orautisticlikesymptomstotheextent
theyarepresent.Butthedistinctionbetweenhyperlexia2and3
becomesacriticalonewhenitcomestovitaleducationaldecisionsand
placements.Hyperlexia3childrendonotdowellintypicalspecial
educationclasses,andrequireinsteaddifferentplacements.Hencethe
cautious,informeddiagnosticroute.
Somewillarguethatthevariousinterventionsandtreatmentsare
responsibleforthat67%ofchildrenwhooutgrowtheirautism.That
maybetrueinsomeinstances,butamongmy165casesareanumber
ofchildren,nowadult,withsufficientoutcomeandfollowupto
concludethatthosewithwhatturnedouttobehyperlexia3didnot
haveASDinthefirstplace,theinitialdiagnosisnotwithstanding.In
thesefollowupcaseswereanumberofsuccessstoriesofverypositive
outcomesfromgratefulparents.Butonewasafirstpersonaccount
fromawoman,nowanadult,whorecountedherjourneywith
hyperlexia3,askingnowthatsheisridofthesymptomsofautism,how
doesshegetridofthemedicalhistoryofautismthatfollowsher.
Mypositionisthatoutgrowingautismismostoftenthesituationin
whichadiagnosisofASDwasprematurelyandmistakenlyapplied,
especiallyinchildrenwhoreadearlyorspokelate.Grantedthatearly
distinctioncanbeaverydifficultonesinceseparatingautisticlike
symptomsfromASDitselfcanbedifficultinthoseearlyyears.
Hopefullyaswestudymorechildrenwithhyperlexiaorspeakinglate,
wewillbecomebetteratthat.
Inthemeantimeacautiousdifferentialdiagnosticapproach,alongwith
careful,watchfulobservationovertimeisadvisedespeciallywhenearly
readingorlatespeakingarethepresentingsymptoms.
Thosechildrenwhoareinthehyperlexia3groupdonotoutgrow
theirautism.TheydidnothaveASDinthefirstplace.Thatisa
meaningfuldistinctionbetweenthetwogroups.Fortunatelyhyperlexia
3childrendoverywelloverthelongtermandthat,ofcourse,isvery
goodnewsforthem,theirparentsandtherestofusaswell.
MeanwhileIwillkeepcollectingreportsfromparents,whichcometo
mealmostdaily,forfurtheranalysisandstudybecausethesuccess
storiesareveryrelevantandencouragingindeed.
References:
Camarata,S.(2015)Latetalkingchildren:Asymptomorastage?MIT
PressCambridge,MA
Fine,Detal(2013)Optimaloutcomeinindividualswithahistoryof
autismJournalofChildPsychologyandPsychiatry54:195205
Shulman,LOutgrowingautism:AdoctorssurpriseandwonderThe
DoctorsBlog,AlbertEinsteinCollegeofMedicineMay5,2015
Treffert,D(2011)Hyperlexia3:Separatingautisticlikebehaviors
fromAutisticDisorderassessingchildrenwhoreadearlyorspeaklate
WMJ110:281286
The views expressed are those of the author(s) and are not necessarily those of Scientic American.
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DaroldA.Treffert
Dr.DaroldTreffertmethisfirstsavantin1962andhasbeenintrigued
withthosespectacular"islandsofgenius"seenintheseextraordinary
peopleeversince.HisworkhasappearedinseveralpreviousScientific
AmericanandMINDarticlesandittwobooks:ExtraordinaryPeople:
UnderstandingSavantSyndrome(2006)andIslandsofGenius:The
BountifulMindoftheAutistic,AcquiredandSuddenSavant(2010).He
alsomaintainsaninternationallyrespectedwebsiteonsavantsyndrome,
autismandrelatedconditionsatwww.savantsyndrome.comhostedbythe
WisconsinMedicalSociety.
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