THE NATIONAL INSTITUTE OF MENTAL HEALTH …...The National Institute for Mental Health 2 Guide to...

READINGMATERIALFORTHEFREESTATESOCIALWORK,LLCCOURSEAUTISMSPECTRUMDISORDER:CAUSES,SIGNS,DIAGNOSISANDTREATMENT

THENATIONALINSTITUTEOFMENTALHEALTHGUIDETOAUTISM

SPECTRUMDISORDER

AboutThisReadingMaterial:

TheGuidetoAutismSpectrumDisorderwaspublishedonlineathttp://www.nimh.nih.govbytheNationalInstituteofMentalHealthaspartoftheirMentalHealthInformationresources.WecreatedthePDFversionofthisinformationinAugustof2015.

TheNationalInstituteforMentalHealth 1GuidetoAutism

What Is Autism Spectrum Disorder? Autismspectrumdisorder(ASD)ischaracterizedby:

Persistentdeficitsinsocialcommunicationandsocialinteractionacrossmultiplecontexts;

Restricted,repetitivepatternsofbehavior,interests,oractivities;

Symptomsmustbepresentintheearlydevelopmentalperiod(typicallyrecognizedinthefirsttwoyearsoflife);and,

Symptomscauseclinicallysignificantimpairmentinsocial,occupational,orotherimportantareasofcurrentfunctioning.

Theterm“spectrum”referstothewiderangeofsymptoms,skills,andlevelsofimpairmentordisabilitythatchildrenwithASDcanhave.Somechildrenaremildlyimpairedbytheirsymptoms,whileothersareseverelydisabled.ThelatesteditionoftheDiagnosticandStatisticalManualofMentalDisorders(DSM-5)nolongerincludesAsperger’ssyndrome;thecharacteristicsofAsperger’ssyndromeareincludedwithinthebroadercategoryofASD.

InformationonASDcanalsobefoundontheEuniceKennedyShriverNationalInstituteofChildHealthandHumanDevelopmentwebsiteandtheCentersforDiseaseControlandPreventionwebsite.

Causes Scientistsdon'tknowtheexactcausesofautismspectrumdisorder(ASD),butresearchsuggeststhatbothgenesandenvironmentplayimportantroles.

Geneticfactors

Inidenticaltwinswhosharetheexactsamegeneticcode,ifonehasASD,theothertwinalsohasASDinnearly9outof10cases.IfonesiblinghasASD,theothersiblingshave35timesthenormalriskofalsodevelopingthedisorder.ResearchersarestartingtoidentifyparticulargenesthatmayincreasetheriskforASD.

Still,scientistshaveonlyhadsomesuccessinfindingexactlywhichgenesare


involved.Formoreinformationaboutsuchcases,seetheinformationbelowaboutFragileXsyndromeandtuberoussclerosis.

MostpeoplewhodevelopASDhavenoreportedfamilyhistoryofautism,suggestingthatrandom,rare,andpossiblymanygenemutationsarelikelytoaffectaperson'srisk.Anychangetonormalgeneticinformationiscalledamutation.Mutationscanbeinherited,butsomearisefornoreason.Mutationscanbehelpful,harmful,orhavenoeffect.

HavingincreasedgeneticriskdoesnotmeanachildwilldefinitelydevelopASD.Manyresearchersarefocusingonhowvariousgenesinteractwitheachotherandenvironmentalfactorstobetterunderstandhowtheyincreasetheriskofthisdisorder.

Environmentalfactors

Inmedicine,"environment"referstoanythingoutsideofthebodythatcanaffecthealth.Thisincludestheairwebreathe,thewaterwedrinkandbathein,thefoodweeat,themedicineswetake,andmanyotherthingsthatourbodiesmaycomeincontactwith.Environmentalsoincludesoursurroundingsinthewomb,whenourmother'shealthdirectlyaffectsourgrowthandearliestdevelopment.

Researchersarestudyingmanyenvironmentalfactorssuchasfamilymedicalconditions,parentalageandotherdemographicfactors,exposuretotoxins,andcomplicationsduringbirthorpregnancy.

Aswithgenes,it'slikelythatmorethanoneenvironmentalfactorisinvolvedinincreasingriskforASD.And,likegenes,anyoneoftheseriskfactorsraisestheriskbyonlyasmallamount.MostpeoplewhohavebeenexposedtoenvironmentalriskfactorsdonotdevelopASD.TheNationalInstituteofEnvironmentalHealthSciencesisalsoconductingresearchinthisarea.Moreinformationisavailableontheirwebsite.

Scientistsarestudyinghowcertainenvironmentalfactorsmayaffectcertaingenes—turningthemonoroff,orincreasingordecreasingtheirnormalactivity.ThisprocessiscalledepigeneticsandisprovidingresearcherswithmanynewwaystostudyhowdisorderslikeASDdevelopandpossiblychangeovertime.

ASDandvaccines

Healthexpertsrecommendthatchildrenreceiveanumberofvaccinesearlyinlifetoprotectagainstdangerous,infectiousdiseases,suchasmeasles.SincepediatriciansintheUnitedStatesstartedgivingthesevaccinesduringregularcheckups,the


numberofchildrengettingsick,becomingdisabled,ordyingfromthesediseaseshasdroppedtoalmostzero.

ChildrenintheUnitedStatesreceiveseveralvaccinesduringtheirfirst2yearsoflife,aroundthesameagethatASDsymptomsoftenappearorbecomenoticeable.Aminorityofparentssuspectthatvaccinesaresomehowrelatedtotheirchild'sdisorder.SomemaybeconcernedaboutthesevaccinesduetotheunproventheorythatASDmaybecausedbythimerosal.Thimerosalisamercury-basedchemicalonceaddedtosome,butnotall,vaccinestohelpextendtheirshelflife.However,exceptforsomefluvaccines,novaccineroutinelygiventopreschoolagedchildrenintheUnitedStateshascontainedthimerosalsince2001.Despitethischange,therateofchildrendiagnosedwithASDhascontinuedtorise.

Otherparentsbelievetheirchild'sillnessmightbelinkedtovaccinesdesignedtoprotectagainstmorethanonedisease,suchasthemeasles-mumps-rubella(MMR)vaccine,whichnevercontainedthimerosal.

Manystudieshavebeenconductedtotrytodetermineifvaccinesareapossiblecauseofautism.Asof2010,noneofthestudieshaslinkedautismandvaccines.

Followingextensivehearings,aspecialcourtofFederaljudgesruledagainstseveraltestcasesthattriedtoprovethatvaccinescontainingthimerosal,eitherbythemselvesorcombinedwiththeMMRvaccine,causedautism.MoreinformationaboutthesehearingsisavailableontheU.S.CourtofFederalClaims'website.

ThelatestinformationaboutresearchonautismandvaccinesisavailablefromtheCentersforDiseaseControlandPrevention.ThiswebsiteprovidesinformationfromtheFederalGovernmentandindependentorganizations.

Early Signs & Symptoms Symptomsofautismspectrumdisorder(ASD)varyfromonechildtothenext,butingeneral,theyfallintotwoareas:

Socialimpairment,includingdifficultieswithsocialcommunication

Repetitiveandstereotypedbehaviors.

ChildrenwithASDdonotfollowtypicalpatternswhendevelopingsocialandcommunicationskills.Parentsareusuallythefirsttonoticeunusualbehaviorsintheirchild.Often,certainbehaviorsbecomemorenoticeablewhencomparingchildrenofthesameage.


Insomecases,babieswithASDmayseemdifferentveryearlyintheirdevelopment.Evenbeforetheirfirstbirthday,somebabiesbecomeoverlyfocusedoncertainobjects,rarelymakeeyecontact,andfailtoengageintypicalback-and-forthplayandbabblingwiththeirparents.Otherchildrenmaydevelopnormallyuntilthesecondoreventhirdyearoflife,butthenstarttoloseinterestinothersandbecomesilent,withdrawn,orindifferenttosocialsignals.LossorreversalofnormaldevelopmentiscalledregressionandoccursinsomechildrenwithASD.

Socialimpairment

MostchildrenwithASDhavetroubleengagingineverydaysocialinteractions.Forexample,somechildrenwithASDmay:

Makelittleeyecontact

Tendtolookandlistenlesstopeopleintheirenvironmentorfailtorespondtootherpeople

Rarelyseektosharetheirenjoymentoftoysoractivitiesbypointingorshowingthingstoothers

Respondunusuallywhenothersshowanger,distress,oraffection.

RecentresearchsuggeststhatchildrenwithASDdonotrespondtoemotionalcuesinhumansocialinteractionsbecausetheymaynotpayattentiontothesocialcuesthatotherstypicallynotice.Forexample,onestudyfoundthatchildrenwithASDfocusonthemouthofthepersonspeakingtotheminsteadofontheeyes,whichiswherechildrenwithtypicaldevelopmenttendtofocus.ArelatedstudyshowedthatchildrenwithASDappeartobedrawntorepetitivemovementslinkedtoasound,suchashand-clappingduringagameofpat-a-cake.Moreresearchisneededtoconfirmthesefindings,butsuchstudiessuggestthatchildrenwithASDmaymisreadornotnoticesubtlesocialcues-asmile,awink,oragrimace-thatcouldhelpthemunderstandsocialrelationshipsandinteractions.Forthesechildren,aquestionsuchas,"Canyouwaitaminute?"alwaysmeansthesamething,whetherthespeakerisjoking,askingarealquestion,orissuingafirmrequest.Withouttheabilitytointerpretanotherperson'stoneofvoiceaswellasgestures,facialexpressions,andothernonverbalcommunications,childrenwithASDmaynotproperlyrespond.

Likewise,itcanbehardforotherstounderstandthebodylanguageofchildrenwithASD.Theirfacialexpressions,movements,andgesturesareoftenvagueordonotmatchwhattheyaresaying.Theirtoneofvoicemaynotreflecttheiractualfeelingseither.ManyolderchildrenwithASDspeakwithanunusualtoneofvoiceandmaysoundsing-songorflatandrobotlike.


ChildrenwithASDalsomayhavetroubleunderstandinganotherperson'spointofview.Forexample,byschoolage,mostchildrenunderstandthatotherpeoplehavedifferentinformation,feelings,andgoalsthantheyhave.ChildrenwithASDmaylackthisunderstanding,leavingthemunabletopredictorunderstandotherpeople'sactions.

Communicationissues

AccordingtotheAmericanAcademyofPediatrics'developmentalmilestones,bythefirstbirthday,typicaltoddlerscansayoneortwowords,turnwhentheyheartheirname,andpointwhentheywantatoy.Whenofferedsomethingtheydonotwant,toddlersmakeitclearwithwords,gestures,orfacialexpressionsthattheansweris"no."

ForchildrenwithASD,reachingsuchmilestonesmaynotbesostraightforward.Forexample,somechildrenwithautismmay:

Failorbeslowtorespondtotheirnameorotherverbalattemptstogaintheirattention

Failorbeslowtodevelopgestures,suchaspointingandshowingthingstoothers

Cooandbabbleinthefirstyearoflife,butthenstopdoingso

Developlanguageatadelayedpace

Learntocommunicateusingpicturesortheirownsignlanguage

Speakonlyinsinglewordsorrepeatcertainphrasesoverandover,seemingunabletocombinewordsintomeaningfulsentences

Repeatwordsorphrasesthattheyhear,aconditioncalledecholalia

Usewordsthatseemodd,outofplace,orhaveaspecialmeaningknownonlytothosefamiliarwiththechild'swayofcommunicating.

EvenchildrenwithASDwhohaverelativelygoodlanguageskillsoftenhavedifficultieswiththebackandforthofconversations.Forexample,becausetheyfinditdifficulttounderstandandreacttosocialcues,somehighlyverbalchildrenwithASDoftentalkatlengthaboutafavoritesubject,buttheywon'tallowanyoneelseachancetorespondornoticewhenothersreactindifferently.

ChildrenwithASDwhohavenotyetdevelopedmeaningfulgesturesorlanguagemaysimplyscreamorgraborotherwiseactoutuntiltheyaretaughtbetterwaysto


expresstheirneeds.Asthesechildrengrowup,theycanbecomeawareoftheirdifficultyinunderstandingothersandinbeingunderstood.Thisawarenessmaycausethemtobecomeanxiousordepressed.

Repetitiveandstereotypedbehaviors

ChildrenwithASDoftenhaverepetitivemotionsorunusualbehaviors.Thesebehaviorsmaybeextremeandverynoticeable,ortheycanbemildanddiscreet.Forexample,somechildrenmayrepeatedlyflaptheirarmsorwalkinspecificpatterns,whileothersmaysubtlymovetheirfingersbytheireyesinwhatlookstobeagesture.Theserepetitiveactionsaresometimescalled"stereotypy"or"stereotypedbehaviors."

ChildrenwithASDalsotendtohaveoverlyfocusedinterests.ChildrenwithASDmaybecomefascinatedwithmovingobjectsorpartsofobjects,likethewheelsonamovingcar.Theymightspendalongtimelininguptoysinacertainway,ratherthanplayingwiththem.Theymayalsobecomeveryupsetifsomeoneaccidentallymovesoneofthetoys.Repetitivebehaviorcanalsotaketheformofapersistent,intensepreoccupation.Forexample,theymightbeobsessedwithlearningallaboutvacuumcleaners,trainschedules,orlighthouses.ChildrenwithASDoftenhavegreatinterestinnumbers,symbols,orsciencetopics.

WhilechildrenwithASDoftendobestwithroutineintheirdailyactivitiesandsurroundings,inflexibilitymayoftenbeextremeandcauseseriousdifficulties.Theymayinsistoneatingthesameexactmealseverydayortakingthesameexactroutetoschool.Aslightchangeinaspecificroutinecanbeextremelyupsetting.Somechildrenmayevenhaveemotionaloutbursts,especiallywhenfeelingangryorfrustratedorwhenplacedinaneworstimulatingenvironment.

Notwochildrenexpressexactlythesametypesandseverityofsymptoms.Infact,manytypicallydevelopingchildrenoccasionallydisplaysomeofthebehaviorscommontochildrenwithASD.However,ifyounoticeyourchildhasseveralASD-relatedsymptoms,haveyourchildscreenedandevaluatedbyahealthprofessionalexperiencedwithASD.

Who Is At Risk? Studiesmeasuringautismspectrumdisorder(ASD)prevalence—thenumberofchildrenaffectedbyASDoveragiventimeperiod—havereportedvaryingresults,dependingonwhenandwherethestudieswereconductedandhowthestudiesdefinedASD.


AsurveybytheCentersforDiseaseControlandPrevention(CDC)ofhealthandschoolrecordsof8-year-oldsin11communitiesthroughoutthecountryfoundthatin2010,therateofASDwashigherthaninpastU.S.studies,around1in68children.Boysfaceaboutfourtofivetimeshigherriskthangirls.

ExpertsdisagreeaboutwhetherthisshowsatrueincreaseinASDprevalence.Sincetheearlierstudieswerecompleted,guidelinesfordiagnosishavechanged.Also,manymoreparentsanddoctorsnowknowaboutASD,soparentsaremorelikelytotaketheirchildrentobediagnosed,andmoredoctorsareabletoproperlydiagnoseASD.Theseandotherchangesmayhelpexplainsomedifferencesinprevalencenumbers.Evenso,theCDCreportconfirmsotherrecentstudiesshowingthatmorechildrenarebeingdiagnosedwithASDthaneverbefore.Formoreinformation,pleasevisittheautismsectionoftheCDCwebsite.

Diagnosis Autismspectrumdisorder(ASD)diagnosisisoftenatwo-stageprocess.Thefirststageinvolvesgeneraldevelopmentalscreeningduringwell-childcheckupswithapediatricianoranearlychildhoodhealthcareprovider.Childrenwhoshowsomedevelopmentalproblemsarereferredforadditionalevaluation.Thesecondstageinvolvesathoroughevaluationbyateamofdoctorsandotherhealthprofessionalswithawiderangeofspecialties.Atthisstage,achildmaybediagnosedashavingASDoranotherdevelopmentaldisorder.

ChildrenwithASDcanusuallybereliablydiagnosedbyage2,thoughresearchsuggeststhatsomescreeningtestscanbehelpfulat18monthsorevenyounger.Manypeople—includingpediatricians,familydoctors,teachers,andparents—mayminimizesignsofASDatfirst,believingthatchildrenwill"catchup"withtheirpeers.WhileyoumaybeconcernedaboutlabelingyouryoungchildwithASD,theearlierthedisorderisdiagnosed,thesoonerspecificinterventionsmaybegin.EarlyinterventioncanreduceorpreventthemoreseveredisabilitiesassociatedwithASD.Earlyinterventionmayalsoimproveyourchild'sIQ,language,andeverydayfunctionalskills,alsocalledadaptivebehavior.

Screening

Awell-childcheckupshouldincludeadevelopmentalscreeningtest,withspecificASDscreeningat18and24monthsasrecommendedbytheAmericanAcademyofPediatrics.ScreeningforASDisnotthesameasdiagnosingASD.Screeninginstrumentsareusedasafirststeptotellthedoctorwhetherachildneedsmoretesting.Ifyourchild'spediatriciandoesnotroutinelyscreenyourchildforASD,ask


thatitbedone.

Forparents,yourownexperiencesandconcernsaboutyourchild'sdevelopmentwillbeveryimportantinthescreeningprocess.Keepyourownnotesaboutyourchild'sdevelopmentandlookthroughfamilyvideos,photos,andbabyalbumstohelpyourememberwhenyoufirstnoticedeachbehaviorandwhenyourchildreachedcertaindevelopmentalmilestones.

TypesofASDscreeninginstruments

Sometimesthedoctorwillaskparentsquestionsaboutthechild'ssymptomstoscreenforASD.Otherscreeninginstrumentscombineinformationfromparentswiththedoctor'sownobservationsofthechild.Examplesofscreeninginstrumentsfortoddlersandpreschoolersinclude:

ChecklistofAutisminToddlers(CHAT)

ModifiedChecklistforAutisminToddlers(M-CHAT)

ScreeningToolforAutisminTwo-Year-Olds(STAT)

SocialCommunicationQuestionnaire(SCQ)

CommunicationandSymbolicBehaviorScales(CSBS).

ToscreenformildASDinolderchildren,thedoctormayrelyondifferentscreeninginstruments,suchas:

AutismSpectrumScreeningQuestionnaire(ASSQ)

AustralianScaleforAsperger'sSyndrome(ASAS)

ChildhoodAspergerSyndromeTest(CAST).

SomehelpfulresourcesonASDscreeningincludetheCenterforDiseaseControlandPrevention'sGeneralDevelopmentalScreeningtoolsandASDSpecificScreeningtoolsontheirwebsite.

Comprehensivediagnosticevaluation

Thesecondstageofdiagnosismustbethoroughinordertofindwhetherotherconditionsmaybecausingyourchild'ssymptoms.

Ateamthatincludesapsychologist,aneurologist,apsychiatrist,aspeechtherapist,orotherprofessionalsexperiencedindiagnosingASDmaydothisevaluation.Theevaluationmayassessthechild'scognitivelevel(thinkingskills),languagelevel,and


adaptivebehavior(age-appropriateskillsneededtocompletedailyactivitiesindependently,forexampleeating,dressing,andtoileting).

BecauseASDisacomplexdisorderthatsometimesoccursalongwithotherillnessesorlearningdisorders,thecomprehensiveevaluationmayincludebrainimagingandgenetests,alongwithin-depthmemory,problem-solving,andlanguagetesting.Childrenwithanydelayeddevelopmentshouldalsogetahearingtestaspartofthecomprehensiveevaluation.

AlthoughchildrencanlosetheirhearingalongwithdevelopingASD,commonASDsymptoms(suchasnotturningtofaceapersoncallingtheirname)canalsomakeitseemthatchildrencannothearwheninfacttheycan.Ifachildisnotrespondingtospeech,especiallytohisorhername,it'simportantforthedoctortotestwhetherachildhashearingloss.

Theevaluationprocessisagoodtimeforparentsandcaregiverstoaskquestionsandgetadvicefromthewholeevaluationteam.Theoutcomeoftheevaluationwillhelpplanfortreatmentandinterventionstohelpyourchild.Besuretoaskwhoyoucancontactwithfollow-upquestions.

WhataresomeotherconditionsthatchildrenwithASDmayhave?

Sensoryproblems

Childrenwithautismspectrumdisorder(ASD)eitheroverreactorunderreacttocertainsights,sounds,smells,textures,andtastes.Forexample,somemay:

Dislikeorshowdiscomfortfromalighttouchorthefeelofclothesontheirskin

Experiencepainfromcertainsounds,likeavacuumcleaner,aringingtelephone,orasuddenstorm;sometimestheywillcovertheirearsandscream

Havenoreactiontointensecoldorpain.

Researchersaretryingtodetermineiftheseunusualreactionsarerelatedtodifferencesinintegratingmultipletypesofinformationfromthesenses.

Sleepproblems

ChildrenwithASDtendtohaveproblemsfallingasleeporstayingasleep,orhaveothersleepproblems.Theseproblemsmakeitharderforthemtopayattention,reducetheirabilitytofunction,andleadtopoorbehavior.Inaddition,parentsof


childrenwithASDandsleepproblemstendtoreportgreaterfamilystressandpooreroverallhealthamongthemselves.

Fortunately,sleepproblemscanoftenbetreatedwithchangesinbehavior,suchasfollowingasleepscheduleorcreatingabedtimeroutine.Somechildrenmaysleepbetterusingmedicationssuchasmelatonin,whichisahormonethathelpsregulatethebody'ssleep-wakecycle.Likeanymedication,melatonincanhaveunwantedsideeffects.Talktoyourchild'sdoctoraboutpossiblerisksandbenefitsbeforegivingyourchildmelatonin.TreatingsleepproblemsinchildrenwithASDmayimprovethechild'soverallbehaviorandfunctioning,aswellasrelievefamilystress.

Intellectualdisability

ManychildrenwithASDhavesomedegreeofintellectualdisability.Whentested,someareasofabilitymaybenormal,whileothers—especiallycognitive(thinking)andlanguageabilities—mayberelativelyweak.Forexample,achildwithASDmaydowellontasksrelatedtosight(suchasputtingapuzzletogether)butmaynotdoaswellonlanguage-basedproblem-solvingtasks.SomechildrenwithASD(suchasthoseformerlydiagnosedwithAsperger’ssyndrome)oftenhaveaverageorabove-averagelanguageskillsanddonotshowdelaysincognitiveabilityorspeech.

Seizures

OneinfourchildrenwithASDhasseizures,oftenstartingeitherinearlychildhoodorduringtheteenyears.Seizures,causedbyabnormalelectricalactivityinthebrain,canresultin

Ashort-termlossofconsciousness,orablackout

Convulsions,whichareuncontrollableshakingofthewholebody,orunusualmovements

Staringspells.

Sometimeslackofsleeporahighfevercantriggeraseizure.Anelectroencephalogram(EEG),anonsurgicaltestthatrecordselectricalactivityinthebrain,canhelpconfirmwhetherachildishavingseizures.However,somechildrenwithASDhaveabnormalEEGseveniftheyarenothavingseizures.

Seizurescanbetreatedwithmedicinescalledanticonvulsants.Someseizuremedicinesaffectbehavior;changesinbehaviorshouldbecloselywatchedinchildrenwithASD.Inmostcases,adoctorwillusethelowestdoseofmedicinethatworksforthechild.Anticonvulsantsusuallyreducethenumberofseizuresbutmaynotpreventallofthem.


Formoreinformationaboutmedications,seetheNIMHonlinebooklet,"MentalHealthMedications".NoneofthesemedicationshavebeenapprovedbytheFDAtospecificallytreatsymptomsofASD.

FragileXsyndrome

FragileXsyndromeisageneticdisorderandisthemostcommonformofinheritedintellectualdisability,causingsymptomssimilartoASD.ThenamereferstoonepartoftheXchromosomethathasadefectivepiecethatappearspinchedandfragilewhenviewedwithamicroscope.FragileXsyndromeresultsfromachange,calledamutation,onasinglegene.Thismutation,ineffect,turnsoffthegene.Somepeoplemayhaveonlyasmallmutationandnotshowanysymptoms,whileothershavealargermutationandmoreseveresymptoms.

Around1in3childrenwhohaveFragileXsyndromealsomeetthediagnosticcriteriaforASD,andabout1in25childrendiagnosedwithASDhavethemutationthatcausesFragileXsyndrome.Becausethisdisorderisinherited,childrenwithASDshouldbecheckedforFragileX,especiallyiftheparentswanttohavemorechildren.OtherfamilymemberswhoareplanningtohavechildrenmayalsowanttobecheckedforFragileXsyndrome.FormoreinformationonFragileX,seetheEuniceKennedyShriverNationalInstituteofChildHealthandHumanDevelopmentwebsite.

Tuberoussclerosis

Tuberoussclerosisisararegeneticdisorderthatcausesnoncanceroustumorstogrowinthebrainandothervitalorgans.Tuberoussclerosisoccursin1to4percentofpeoplewithASD.Ageneticmutationcausesthedisorder,whichhasalsobeenlinkedtointellectualdisability,epilepsy,andmanyotherphysicalandmentalhealthproblems.Thereisnocurefortuberoussclerosis,butmanysymptomscanbetreated.

Gastrointestinalproblems

SomeparentsofchildrenwithASDreportthattheirchildhasfrequentgastrointestinal(GI)ordigestionproblems,includingstomachpain,diarrhea,constipation,acidreflux,vomiting,orbloating.FoodallergiesmayalsocauseproblemsforchildrenwithASD.It'sunclearwhetherchildrenwithASDaremorelikelytohaveGIproblemsthantypicallydevelopingchildren.IfyourchildhasGIproblems,adoctorwhospecializesinGIproblems,calledagastroenterologist,canhelpfindthecauseandsuggestappropriatetreatment.

SomestudieshavereportedthatchildrenwithASDseemtohavemoreGIsymptoms,


butthesefindingsmaynotapplytoallchildrenwithASD.Forexample,arecentstudyfoundthatchildrenwithASDinMinnesotaweremorelikelytohavephysicalandbehavioraldifficultiesrelatedtodiet(forexample,lactoseintoleranceorinsistingoncertainfoods),aswellasconstipation,thanchildrenwithoutASD.TheresearcherssuggestedthatchildrenwithASDmaynothaveunderlyingGIproblems,butthattheirbehaviormaycreateGIsymptoms—forexample,achildwhoinsistsoneatingonlycertainfoodsmaynotgetenoughfiberorfluidsinhisorherdiet,whichleadstoconstipation.

SomeparentsmaytrytoputtheirchildonaspecialdiettocontrolASDorGIsymptoms.Whilesomechildrenmaybenefitfromlimitingcertainfoods,thereisnostrongevidencethatthesespecialdietsreduceASDsymptoms.Ifyouwanttotryaspecialdiet,firsttalkwithadoctororanutritionexperttomakesureyourchild'snutritionalneedsarebeingmet.

Co-occurringmentaldisorders

ChildrenwithASDcanalsodevelopmentaldisorderssuchasanxietydisorders,attentiondeficithyperactivitydisorder(ADHD),ordepression.ResearchshowsthatpeoplewithASDareathigherriskforsomementaldisordersthanpeoplewithoutASD.Managingtheseco-occurringconditionswithmedicationsorbehavioraltherapy,whichteacheschildrenhowtocontroltheirbehavior,canreducesymptomsthatappeartoworsenachild'sASDsymptoms.ControllingtheseconditionswillallowchildrenwithASDtofocusmoreonmanagingtheASD.

RelatedDisorders

Rettsyndromeisanotherdevelopmentaldisorderwhichincludesaregressionindevelopment.Only1ofevery10,000to22,000girlshasRettsyndrome.

UnlikeASD,Rettsyndromemostlyaffectsgirls.Ingeneral,childrenwithRettsyndromedevelopnormallyfor6–18monthsbeforeregressionandautism-likesymptomsbegintoappear.ChildrenwithRettsyndromemayalsohavedifficultieswithcoordination,movement,andspeech.Physical,occupational,andspeechtherapycanhelp,butnospecifictreatmentforRettsyndromeisavailableyet.

WithfundingfromtheEuniceKennedyShriverNationalInstituteofChildHealthandHumanDevelopment,scientistshavediscoveredthatamutationinthesequenceofasinglegeneislinkedtomostcasesofRettsyndrome.Thisdiscoverymayhelpscientistsfindwaystosloworstoptheprogressofthedisorder.Itmayalsoimprovedoctors'abilitytodiagnoseandtreatchildrenwithRettsyndromeearlier,improvingtheiroverallqualityoflife.


Treatments Whilethere'snoprovencureyetforautismspectrumdisorder(ASD),treatingASDearly,usingschool-basedprograms,andgettingpropermedicalcarecangreatlyreduceASDsymptomsandincreaseyourchild'sabilitytogrowandlearnnewskills.

Earlyintervention

ResearchhasshownthatintensivebehavioraltherapyduringthetoddlerorpreschoolyearscansignificantlyimprovecognitiveandlanguageskillsinyoungchildrenwithASD.ThereisnosinglebesttreatmentforallchildrenwithASD,buttheAmericanAcademyofPediatricsrecentlynotedcommonfeaturesofeffectiveearlyinterventionprograms.Theseinclude:

StartingassoonasachildhasbeendiagnosedwithASD

Providingfocusedandchallenginglearningactivitiesattheproperdevelopmentallevelforthechildforatleast25hoursperweekand12monthsperyear

Havingsmallclassestoalloweachchildtohaveone-on-onetimewiththetherapistorteacherandsmallgrouplearningactivities

Havingspecialtrainingforparentsandfamily

Encouragingactivitiesthatincludetypicallydevelopingchildren,aslongassuchactivitieshelpmeetaspecificlearninggoal

Measuringandrecordingeachchild'sprogressandadjustingtheinterventionprogramasneeded

Providingahighdegreeofstructure,routine,andvisualcues,suchaspostedactivityschedulesandclearlydefinedboundaries,toreducedistractions

Guidingthechildinadaptinglearnedskillstonewsituationsandsettingsandmaintaininglearnedskills

Usingacurriculumthatfocuseson

Languageandcommunication

Socialskills,suchasjointattention(lookingatotherpeopletodrawattentiontosomethinginterestingandshareinexperiencingit)


Self-helpanddailylivingskills,suchasdressingandgrooming

Research-basedmethodstoreducechallengingbehaviors,suchasaggressionandtantrums

Cognitiveskills,suchaspretendplayorseeingsomeoneelse'spointofview

Typicalschool-readinessskills,suchasletterrecognitionandcounting.

Onetypeofawidelyacceptedtreatmentisappliedbehavioranalysis(ABA).ThegoalsofABAaretoshapeandreinforcenewbehaviors,suchaslearningtospeakandplay,andreduceundesirableones.ABA,whichcaninvolveintensive,one-on-onechild-teacherinteractionforupto40hoursaweek,hasinspiredthedevelopmentofother,similarinterventionsthataimtohelpthosewithASDreachtheirfullpotential.ABA-basedinterventionsinclude:

VerbalBehavior—focusesonteachinglanguageusingasequencedcurriculumthatguideschildrenfromsimpleverbalbehaviors(echoing)tomorefunctionalcommunicationskillsthroughtechniquessuchaserrorlessteachingandprompting

PivotalResponseTraining—aimsatidentifyingpivotalskills,suchasinitiationandself-management,thataffectabroadrangeofbehavioralresponses.Thisinterventionincorporatesparentandfamilyeducationaimedatprovidingskillsthatenablethechildtofunctionininclusivesettings.

Othertypesofearlyinterventionsinclude:

Developmental,IndividualDifference,Relationship-based(DIR)/FloortimeModel—aimstobuildhealthyandmeaningfulrelationshipsandabilitiesbyfollowingthenaturalemotionsandinterestsofthechild.OneparticularexampleistheEarlyStartDenverModel,whichfostersimprovementsincommunication,thinking,language,andothersocialskillsandseekstoreduceatypicalbehaviors.Usingdevelopmentalandrelationship-basedapproaches,thistherapycanbedeliveredinnaturalsettingssuchasthehomeorpre-school.

TEACCH(TreatmentandEducationofAutisticandrelatedCommunicationhandicappedChildren)—emphasizesadaptingthechild'sphysicalenvironmentandusingvisualcues(forexample,havingclassroommaterialsclearlymarkedandlocatedsothatstudentscanaccessthem


independently).Usingindividualizedplansforeachstudent,TEACCHbuildsonthechild'sstrengthsandemergingskills.

InterpersonalSynchrony—targetssocialdevelopmentandimitationskills,andfocusesonteachingchildrenhowtoestablishandmaintainengagementwithothers.

Forchildrenyoungerthanage3,theseinterventionsusuallytakeplaceathomeorinachildcarecenter.Becauseparentsareachild'searliestteachers,moreprogramsarebeginningtotrainparentstocontinuethetherapyathome.

StudentswithASDmaybenefitfromsometypeofsocialskillstrainingprogram.Whiletheseprogramsneedmoreresearch,theygenerallyseektoincreaseandimproveskillsnecessaryforcreatingpositivesocialinteractionsandavoidingnegativeresponses.Forexample,Children'sFriendshipTrainingfocusesonimprovingchildren'sconversationandinteractionskillsandteachesthemhowtomakefriends,beagoodsport,andrespondappropriatelytoteasing.

Workingwithyourchild'sschool

Startbyspeakingwithyourchild'steacher,schoolcounselor,ortheschool'sstudentsupportteamtobeginanevaluation.EachstatehasaParentTrainingandInformationCenterandaProtectionandAdvocacyAgencythatcanhelpyougetanevaluation.Ateamofprofessionalsconductstheevaluationusingavarietyoftoolsandmeasures.Theevaluationwilllookatallareasrelatedtoyourchild'sabilitiesandneeds.

Onceyourchildhasbeenevaluated,heorshehasseveraloptions,dependingonthespecificneeds.IfyourchildneedsspecialeducationservicesandiseligibleundertheIndividualswithDisabilitiesEducationAct(IDEA),theschooldistrict(orthegovernmentagencyadministeringtheprogram)mustdevelopanindividualizededucationplan,orIEPspecificallyforyourchildwithin30days.

IDEAprovidesfreescreeningsandearlyinterventionservicestochildrenfrombirthtoage3.IDEAalsoprovidesspecialeducationandrelatedservicesfromages3to21.InformationisavailablefromtheU.S.DepartmentofEducation.

Ifyourchildisnoteligibleforspecialeducationservices—notallchildrenwithASDareeligible—heorshecanstillgetfreepubliceducationsuitedtohisorherneeds,whichisavailabletoallpublic-schoolchildrenwithdisabilitiesunderSection504oftheRehabilitationActof1973,regardlessofthetypeorseverityofthedisability.

TheU.S.DepartmentofEducation'sOfficeforCivilRightsenforcesSection504in


programsandactivitiesthatreceiveFederaleducationfunds.MoreinformationonSection504isavailableontheDepartmentofEducationwebsite.

MoreinformationaboutU.S.DepartmentofEducationprogramsforchildrenwithdisabilitiesisavailableontheirwebsite.

Duringmiddleandhighschoolyears,yourchild'steacherswillbegintodiscusspracticalissuessuchaswork,livingawayfromaparentorcaregiver'shome,andhobbies.Theselessonsshouldincludegainingworkexperience,usingpublictransportation,andlearningskillsthatwillbeimportantincommunityliving.

Medications

Somemedicationscanhelpreducesymptomsthatcauseproblemsforyourchildinschoolorathome.Manyothermedicationsmaybeprescribedoff-label,meaningtheyhavenotbeenapprovedbytheU.S.FoodandDrugAdministration(FDA)foracertainuseorforcertainpeople.Doctorsmayprescribemedicationsoff-labeliftheyhavebeenapprovedtotreatotherdisordersthathavesimilarsymptomstoASD,oriftheyhavebeeneffectiveintreatingadultsorolderchildrenwithASD.Doctorsprescribemedicationsoff-labeltotrytohelptheyoungestpatients,butmoreresearchisneededtobesurethatthesemedicinesaresafeandeffectiveforchildrenandteenswithASD.

Atthistime,theonlymedicationsapprovedbytheFDAtotreataspectsofASDaretheantipsychoticsrisperidone(Risperdal)andaripripazole(Abilify).Thesemedicationscanhelpreduceirritability—meaningaggression,self-harmingacts,ortempertantrums—inchildrenages5to16whohaveASD.

Somemedicationsthatmaybeprescribedoff-labelforchildrenwithASDincludethefollowing:

Antipsychoticmedicationsaremorecommonlyusedtotreatseriousmentalillnessessuchasschizophrenia.Thesemedicinesmayhelpreduceaggressionandotherseriousbehavioralproblemsinchildren,includingchildrenwithASD.Theymayalsohelpreducerepetitivebehaviors,hyperactivity,andattentionproblems.

Antidepressantmedications,suchasfluoxetine(Prozac)orsertraline(Zoloft),areusuallyprescribedtotreatdepressionandanxietybutaresometimesprescribedtoreducerepetitivebehaviors.SomeantidepressantsmayalsohelpcontrolaggressionandanxietyinchildrenwithASD.However,researchersstillarenotsureifthesemedicationsareuseful;arecentstudysuggestedthattheantidepressantcitalopram(Celexa)wasnomoreeffective


thanaplacebo(sugarpill)atreducingrepetitivebehaviorsinchildrenwithASD.

Stimulantmedications,suchasmethylphenidate(Ritalin),aresafeandeffectiveintreatingpeoplewithattentiondeficithyperactivitydisorder(ADHD).MethylphenidatehasbeenshowntoeffectivelytreathyperactivityinchildrenwithASDaswell.ButnotasmanychildrenwithASDrespondtotreatment,andthosewhodohaveshownmoresideeffectsthanchildrenwithADHDandnotASD.

Allmedicationscarryariskofsideeffects.Fordetailsonthesideeffectsofcommonpsychiatricmedications,seetheNIMHwebsiteon"MentalHealthMedications".

FDAwarningaboutantidepressants

Antidepressantsaresafeandpopular,butsomestudieshavesuggestedthattheymayhaveunintendedeffectsonsomepeople,especiallyinteensandyoungadults.TheFDAwarningsaysthatpatientsofallagestakingantidepressantsshouldbewatchedclosely,especiallyduringthefirstfewweeksoftreatment.Possiblesideeffectstolookforaredepressionthatgetsworse,suicidalthinkingorbehavior,oranyunusualchangesinbehaviorsuchastroublesleeping,agitation,orwithdrawalfromnormalsocialsituations.Familiesandcaregiversshouldreportanychangestothedoctor.ThelatestinformationisavailableontheFDAwebsite.

AchildwithASDmaynotrespondinthesamewaytomedicationsastypicallydevelopingchildren.YoushouldworkwithadoctorwhohasexperiencetreatingchildrenwithASD.Thedoctorwillusuallystartyourchildonthelowestdosethathelpscontrolproblemsymptoms.Askthedoctoraboutanysideeffectsofthemedicationandkeeparecordofhowyourchildreactstothemedication.Thedoctorshouldregularlycheckyourchild'sresponsetothetreatment.

Youhavemanyoptionsfortreatingyourchild'sASD.However,notallofthemhavebeenproventoworkthroughscientificstudies.Readthepatientinformationthatcomeswithyourchild'smedication.Somepeoplekeepthesepatientinsertsalongwiththeirothernotesforeasyreference.Thisismostusefulwhendealingwithseveraldifferentprescriptionmedications.Youshouldgetallthefactsaboutpossiblerisksandbenefitsandtalktomorethanoneexpertwhenpossiblebeforetryinganewtreatmentonyourchild.

Living With Afteryourchildisdiagnosedwithautismspectrumdisorder(ASD),youmayfeel


unpreparedorunabletoprovideyourchildwiththenecessarycareandeducation.Knowthattherearemanytreatmentoptions,socialservicesandprograms,andotherresourcesthatcanhelp.

Sometipsthatcanhelpyouandyourchildare:

Keeparecordofconversations,meetingswithhealthcareprovidersandteachers,andothersourcesofinformation.Thiswillhelpyourememberthedifferenttreatmentoptionsanddecidewhichwouldhelpyourchildmost.

Keeparecordofthedoctors'reportsandyourchild'sevaluation.Thisinformationmayhelpyourchildqualifyforspecialprograms.

Contactyourlocalhealthdepartmentorautismadvocacygroupstolearnaboutthespecialprogramsavailableinyourstateandlocalcommunity.

Talkwithyourchild'spediatrician,schoolsystem,oranautismsupportgrouptofindanautismexpertinyourareawhocanhelpyoudevelopaninterventionplanandfindotherlocalresources.

UnderstandingteenswithASD

Theteenyearscanbeatimeofstressandconfusionforanygrowingchild,includingteenagerswithautismspectrumdisorder(ASD).

Duringtheteenageyears,adolescentsbecomemoreawareofotherpeopleandtheirrelationshipswiththem.Whilemostteenagersareconcernedwithacne,popularity,grades,anddates,teenswithASDmaybecomepainfullyawarethattheyaredifferentfromtheirpeers.Forsome,thisawarenessmayencouragethemtolearnnewbehaviorsandtrytoimprovetheirsocialskills.Forothers,hurtfeelingsandproblemsconnectingwithothersmayleadtodepression,anxiety,orothermentaldisorders.OnewaythatsometeenswithASDmayexpressthetensionandconfusionthatcanoccurduringadolescenceisthroughincreasedautisticoraggressivebehavior.TeenswithASDwillalsoneedsupporttohelpthemunderstandthephysicalchangesandsexualmaturationtheyexperienceduringadolescence.

Ifyourteenseemstohavetroublecoping,talkwithhisorherdoctoraboutpossibleco-occurringmentaldisordersandwhatyoucando.Behavioraltherapiesandmedicationsoftenhelp.

Preparingforyourchild'stransitiontoadulthood

Thepublicschools'responsibilityforprovidingservicesendswhenachildwithASD


reachestheageof22.Atthattime,somefamiliesmaystruggletofindjobstomatchtheiradultchild'sneeds.Ifyourfamilycannotcontinuecaringforanadultchildathome,youmayneedtolookforotherlivingarrangements.Formoreinformation,seethesection,"LivingarrangementsforadultswithASD."

Longbeforeyourchildfinishesschool,youshouldsearchforthebestprogramsandfacilitiesforyoungadultswithASD.IfyouknowotherparentsofadultswithASD,askthemabouttheservicesavailableinyourcommunity.Localsupportandadvocacygroupsmaybeabletohelpyoufindprogramsandservicesthatyourchildiseligibletoreceiveasanadult.

AnotherimportantpartofthistransitionisteachingyouthwithASDtoself-advocate.Thismeansthattheystarttotakeonmoreresponsibilityfortheireducation,employment,healthcare,andlivingarrangements.AdultswithASDorotherdisabilitiesmustself-advocatefortheirrightsundertheAmericanswithDisabilitiesActatwork,inhighereducation,inthecommunity,andelsewhere.

LivingarrangementsforadultswithASD

TherearemanyoptionsforadultslivingwithASD.Helpingyouradultchildchoosetherightonewilllargelydependonwhatisavailableinyourstateandlocalcommunity,aswellasyourchild'sskillsandsymptoms.Belowaresomeexamplesoflivingarrangementsyoumaywanttoconsider:

Independentliving.SomeadultswithASDareabletoliveontheirown.Otherscanliveintheirownhomeorapartmentiftheygethelpdealingwithmajorissues,suchasmanagingpersonalfinances,obtainingnecessaryhealthcare,andinteractingwithgovernmentorsocialserviceagencies.Familymembers,professionalagencies,orothertypesofproviderscanofferthisassistance.

Livingathome.GovernmentfundsareavailableforfamilieswhochoosetohavetheiradultchildwithASDliveathome.TheseprogramsincludeSupplementalSecurityIncome,SocialSecurityDisabilityInsurance,andMedicaidwaivers.InformationabouttheseprogramsandothersisavailablefromtheSocialSecurityAdministration(SSA).MakeanappointmentwithyourlocalSSAofficetofindoutwhichprogramswouldberightforyouradultchild.

Otherhomealternatives.Somefamiliesopentheirhomestoprovidelong-termcaretoadultswithdisabilitieswhoarenotrelatedtothem.Ifthehometeachesself-careandhousekeepingskillsandarrangesleisureactivities,itis


calleda"skill-development"home.

Supervisedgroupliving.Peoplewithdisabilitiesoftenliveingrouphomesorapartmentsstaffedbyprofessionalswhohelpwithbasicneeds.Theseneedsoftenincludemealpreparation,housekeeping,andpersonalcare.Peoplewhoaremoreindependentmaybeabletoliveinahomeorapartmentwherestaffonlyvisitafewtimesaweek.Suchresidentsgenerallypreparetheirownmeals,gotowork,andconductotherdailyactivitiesontheirown.

Long-termcarefacilities.ThisalternativeisavailableforthosewithASDwhoneedintensive,constantsupervision.

Clinical Trials Manyrecentresearchstudieshavefocusedonfindingtheearliestsignsofautismspectrumdisorder(ASD).Thesestudiesaimtohelpdoctorsdiagnosechildrenatayoungeragesotheycangetneededinterventionsasquicklyaspossible.

Forexample,oneearlysignofASDmaybeincreasedheadsizeorrapidheadgrowth.Brainimagingstudieshaveshownthatabnormalbraindevelopmentbeginninginaninfant'sfirstmonthsmayhavearoleinASD.Thistheorysuggeststhatgeneticdefectsingrowthfactors,whichdirectproperbraindevelopment,causethebrainabnormalitiesseeninautism.It'spossiblethataninfant'ssudden,rapidheadgrowthmaybeanearlywarningsignal,whichcouldhelpinearlydiagnosisandtreatmentorpossiblepreventionofASD.CurrentstudiesonASDtreatmentareexploringmanyapproaches,suchas:

Acomputer-basedtrainingprogramdesignedtoteachchildrenwithASDhowtocreateandrespondtofacialexpressionsappropriately

AmedicationthatmayhelpimprovefunctioninginchildrenwithFragileXsyndrome

Newsocialinterventionsthatcanbeusedintheclassroomorother"everyday"settings

AninterventionparentscanfollowtoreduceandpreventASD-relateddisabilityinchildrenathighriskforthedisorder.

MoreinformationaboutclinicaltrialsonASDfundedbytheNationalInstituteofMentalHealthisavailableonthewebsite.


YoucanreadaboutfutureresearchplansontheInteragencyAutismCoordinatingCommittee's(IACC's)website.TheIACCismadeupofrepresentativesofFederalagenciesandmembersofthepublicandcoordinateseffortswithintheU.S.DepartmentofHealthandHumanServicesconcerningASD.

NIMHsupportsresearchstudiesonmentalhealthanddisorders.Seealso:AParticipant'sGuidetoMentalHealthClinicalResearch.

Participate,referapatientorlearnaboutresultsofstudiesinClinicalTrials.gov,theNIH/NationalLibraryofMedicine'sregistryoffederallyandprivatelyfundedclinicaltrialsforalldisease.

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