What happens to autistic children when they grow old? A follow-up of the Maudsley cohort of children diagnosed with autism in 1950-70

Verylittleisknownaboutwhathappenstoautisticchildrenwhentheygrowupandgrowold.Thisiscrucialtoknow,forplanningappropriateservices,andbecausephysicalandcognitivechangesmaygiveimportantcluestounderstandautismbetter.Todate,anumberofstudieshavereportedonthesocialoutcomesofautisticadults.Theexactassessmentofsuchoutcomesvariesbetweenstudiesbuttypicallyinvolvesassessingindependence,employment,andfriendships[1].Althoughvaryingbetweenstudies,moststudiestypicallyreportverypoor,orpooroutcomesforautisticadults[2].Findingssuggestthat,onaverage,autisticadultshavelittleindependence,lowautonomy,andfewfriendships.Longitudinalstudiesareneededtotrytoestablishthepredictorsofthesepooroutcomes,inordertointervenetoimprovequalityoflifeforautisticadults.TheMaudsleyautismcohortisoneofthebestestablishedandlongestrunningfollow-upstudiesofadultautismoutcomes.Sixtyindividualsdiagnosedwithautismaschildren(aged2-23years,mean7years)attheInstituteofPsychiatry/MaudsleyHospitalbetween1950-1979,havebeenfollowed-upforover40years[3].Intheirmid-20sand40s,adultoutcomewasassessedinpersonwithstandardiseddiagnosticandcognitivetests,plussocial/adaptivefunctioningandmentalhealthmeasures.Studies,includingthosewiththeMaudsleycohort,haveidentifiedsomepredictorsofbetteroutcome.ChildhoodIQhasbeenreportedtopredictsocialoutcomeacrossanumberofstudies.Specifically,Howlinetal.(2004)identifiedaPerformanceIQ(PIQ)of70orabovetodemarcatethosewithagood/verygoodoutcomefromthosewithpoor/verypooroutcomes[1,3].Inaddition,bothautistic-typebehaviourandlanguageuse(none,phrase,functional)predictedsocialoutcome[3].Overthepasttwodecadestherehavebeencallstomeasureoutcomesinamoreholisticwayforautisticadults[4].QualityofLife(QOL)isanimportantoutcome,encompassingphysical,mentalandsocialwell-being.ArecentstudybyMossetal.(2017)reportedQOLoutcomesfortheMaudsleycohorttobecomparabletothegeneralpopulation[5].Yet,inotherstudies,QOLforautisticadultshasbeenreportedtobesignificantlylowerthanthegeneralpopulation[6].FurtherstudyofQOLinolderadults,identifyingexactlywhatcontributestogoodQOLforthispopulation,isneeded.Thestudenthaspreviouslyconductedcross-sectionalworkonQOLinautisticadults[7],andcreatedadaptationsofstandardQOLmeasuresforthispopulation[8].

Theprimaryaimistoexplorethementalandphysicalhealth,cognitionandwellbeingofolderadultsdiagnosedwithautismaschildrenandfollowed-upover40years.Associatesandpredictorsofoutcomeandoftrajectoriesofageing,willbeinvestigatedWherepossiblewewillalsocontactthesiblingsoftheMaudsleycohortprobands,takingadimensionalapproachtoautismtraits,andexploringthewiderfamilyimpactofneurodiversity.Thisworkmaybecomplementedbyfurtherquantitativeandqualitativestudiesofageingandautism,including:qualitativeinterviewswitholderautisticadultsandtheirfamilymembers;screeningandmeasuringautistictraitsinoldagepsychiatryclinicsattheMaudsley;orworkingonotherexistingdatasetsrelevanttoautistictraitsinlateradulthood.(e.g.theDunedinproject).