the elephant in the room - autscape.org · make it harder to get help for the rest • we’re back...
TRANSCRIPT
TheElephantintheRoom
NatTitmanAutscape2018
Introduction
• Thisisatalkexploringwhysomeautisticpeoplearen’trecognised(akadiagnosed)asautisticinchildhood
• Usingsustainedmetaphorsandallegoriestoexploretypesofavoidanceandbiasatplay
• Thenconsideringhowthesefactorscanalsoaffectautisticpeoplewithotherdisabilities,chronicillnessesorneurodivergencies
AboutMe• Ididn’taccessanautisticspectrumdiagnosisuntil2012,age32
• Beforethat,dyspraxiain2007
• I’vesincebeendiagnosedwithSensoryModulationDisorderandADHD(Inattentivetype)
• Ihavea‘hidden’physicaldisability
Natthemself@quarridors
quarridors.com
• I’mnotaresearcheroran‘autismprofessional’
“Theelephantintheroom”
Image–BenTonge,LeagasDelaney
“Theelephantintheroom”
• Anidiomforavoidingadifficulttruth
• Pretendingnottonoticethelargeandobviousinconvenientfactthatnooneiscomfortableacknowledgingormentioning
• Thiscanworkasametaphorforavoidanceoftenshownbytheadultsinanautisticchild’slife,whichmightdelayrecognition,accesstoservices,SENDaccommodationsetc
“Wedon’twanttolabelhim”• Beforeacceptingneurodivergence,peopleinthechild’slifemightactivelylookforwaystoavoidacknowledgingthe‘elephant’
• “Weknowshe’sabitdifferent,butthat’sjustwhatmakeshertheuniquepersonsheis”
• “Wedon’twanttolimithimwithadiagnosis”
• Teacher:“Autism’scontroversialandupsetting,it’snotourplacetosuggestthistoparents”
Theelephantfromwithintheroom• The“elephantintheroom”metaphorplaysonhowanelephant’ssizewouldbeunavoidable;they’drubagainstyou,knockoverfurniture
• Evenifyou’renotmentioningtheelephant,it’spresenceisobviousfromwithintheroom
• Parents,caregiversorteachersofanautisticchildareintheroomwiththeir‘elephant’
• Evenwithoutnamingit,theyknowsomethingisthere,theyknowitsshapeandsize
TheParableoftheElephant
Image– romanaklee,flickr
TheParableoftheElephant
• Datestoatleastthe1stCenturyBCE• Agroupofpeopleexamineanelephant,they’reeitherblind,blindfoldedorinthedark
• Eachfeelsonlyonepartoftheelephantandconfidentlydeclaresit’ssomeotherobject
• Thelegsaretreetrunks,thetailisrope,theearsareafan,thetusksarespears,thetrunkisasnake,thebodyisaboulder
TheParableoftheElephant
Image–NatTitman
Diagnosinganelephant
• Imagineourblindfoldedpeopleasdifferenttypesofexperts,alltryingto‘diagnose’theelephant
• Eachspecialisesintheirownareaofthebody• Notonehassuccessfullydiagnosed‘elephant’• Theoriginalparableoftenendswiththedifferentpeoplecomparingnotesandrealisingtheyneedtoworkasateamtounderstandtheelephantasawhole– ifonlymorespecialistsdidthis!
Theelephantthroughthedoor?
It’shardtogetanelephantintoadoctor’soffice,onlyonepartcanpokeinthroughtheirdoor
Image–BaronC.deGrimm,ProjectGutenburg
Theelephantthroughthedoor?• Expertsrarelyspendlongenoughwithachildtobeabletoseethe‘wholeelephant’
• Specialistsindifferentneurodivergenciesrarelyworktogetherorcomparenotes
• Theynevergettoseetheentire‘elephant’,onlythefractionthatfitsintotheiroffice
• Eachonlyfindsthefan,thespear,thesnake,theropeorthetreetrunkthatfitintheirdoor
Frommetaphortocasestudy
• Imagineyou’reanundiagnosedbuthighlyverbalautisticchildwhocouldbediagnosedwithallsortsofotheroverlappingconditions
• Thinkabouttheshapethatyour‘elephant’mighttake,andhowmanydifferentpartstherewouldbetoit
• Considerwhichtypeofexpertmightbethefirstdooryour‘elephant’peeksthrough…
Scenario1:Learningdifficulties• You’remostlyseenasverybright,butyoustrugglewithoneaspectofyourschoolwork
• Maybeyoualwaysscorepoorlyonspellingtestsdespitereadingandwritingwell
• Maybeyoucan’tlearnyourtimestables,oryourmentalarithmeticisextremelypoor
• Youmaybesenttoaneducationalpsychologistwhodiagnosesdyslexia,dyscalculiaorspecificlearningdifficulties
Scenario2:Sensoryissues
• Perhapsyou’reverysensitivetoloudnoises• Youcomplainaboutflickeringlightsthatnooneelsecanperceive
• Yourefusetotakepartinstickyormessyplay
• Youcan’tstandhowclothesfeelonyourskin• Youcouldbesenttoanoccupationaltherapistwhodiagnoseshyperacusisorasensoryintegration/modulationdisorder
Scenario3:Hyperactivity
• Perhapsyou’reseenasloudanddisruptiveinnurseryschool
• Ormaybetheynoticeyouhavedifficultyfollowinginstructionsinprimaryschool
• Perhapsyouasksomany‘sillyquestions’thatyourteacherassumesyoucan’tbesincere
• YoucouldbegivenanADHDdiagnosisfirst,orpossiblyevenaconductdisorder
Scenario4:Coordination• Youcan’tyetcatchaball,rideabike,whistleortieshoelaceswhenyourclassmatesallcan
• Perhapsyou’reweakerandlesscoordinatedthananyoneelseinPEclassesorduringcraftactivities
• Maybeit’syourhandwritingandimproperpengrip,yourinabilitytouseafountainpen
• Youmightgetclassedashavingdyspraxia,DevelopmentalCoordinationDisorder,perhapsNonverbalLearningDisability
Scenario5:Anxiety• Whatifinsteadofbeinglabelled,youstarttobecomeextremelyanxious
• Perhapsyoushowsignsofcompulsions,followritualstoavoiddisastershappening
• Oryoubelieveeveryonehatesyou,isouttogetyou,thateverylaughisaboutyou
• Youmightbediagnosedwithsomeformofanxietydisorderorobsessivecompulsions
Scenario6:Social/Emotional• Maybeyouhaveverynaïveorunusualbeliefs
• Orgetmuchmoreupset,ormoreenthusiasticandanimatedthanmostkidsyouragedo
• Perhapsyouactverychildishly,andhave‘ageinappropriate’intereststhatleadtoridicule
• Oryoucopyotherchildrentogetbyandsoactwildlydifferentinsomeclassestoothers
• Thismaybemisinterpretedasemotionalissues,apersonalitydisorder,evenatypicalpsychosis
Scenario7:‘Gifted’• Ormaybeeveryonefocusesonhowyoudoextremelywellatsomeschoolsubjects
• Youtalktoteacherslikeyou’reanotheradult,alittleprofessororphilosopher
• Youtakeyourhobbiessofarandpracticesointentlythatyou’reseenasaprodigy
• Maybeyou’relabelledasgifted,orevenwith‘GiftedChildSyndrome’whereemotionalskillslagbehindintellectualdevelopment
Howwoulditreallygo?• Noteveryspecialistourcasestudykidmightseewillunderstandthepervasive,overlappingwaythatneurodivergentconditionsaffectourlives
• EducationalPsychologists,OccupationalTherapists,etcoftendon’tknowthespectrumwellenoughtolookoutfor‘autisticelephants’
• Specialistsmightcometointerpretthenumberof‘undiagnosedelephants’beingsqueezedintotheirofficesinadifferentway…
Thetreetrunksintheroom?“IknewthiswasatreetrunkassoonasIheardthetrumpetingcomingfromthewaitingroom”
“It’snotstrictlyinthediagnosticcriteriabut,asanexpert,youstarttostarttorecognisenon-clinicalsymptomsoftreetrunkism”
“Inmyprofessionalexperience,treetrunkscomeinfours,andwithmanyothercomorbidconditions–particularlyspearsandfans”
Image– NewBeauty
Notsohypothetical
• Surprise!Iwasthathypotheticalhighlyverbalundiagnosedmultiplyneurodivergentchild
• AllthosescenariosdescribeddifferenttraitsIshowedthatmeantIstoodoutfrommypeersindifferentcontextsoratdifferentages
• SowhatdidIreallygetdiagnosedwith?• Whatpartofmyelephantwasthefirsttopokethroughaspecialist’sdoor?
Itwasthetipsofmytoes!
• Inreallife,thethingeveryonewasmostconcernedaboutwasthatIwasstillwalkingontip-toesattheageof6
• Iwassenttoaconsultantpediatricianwhodiagnosedachillestendoncontractures
• Aphysical,measurableproblemwiththetightnessofmyheelmuscles!
• Eureka!Thesearchwasover!
Thisexplainseverything!• Otherdifficultieswereignoredforawhile–afterall,Iwasbeingseenbyanexpert
• EventuallyIhadheelsurgerytolengthenmytendons,followedbyphysiotherapy
• Andsoeveryproblemwascoveredbymylegs– orbytheschoolworkI’dmissedbeinginhospital– orbynotbeingabletodoPEforayear,etcetc
• Whylookforanythingelse?!
Theelephantundertherug
Image–NatTitman
Theelephantundertherug
• Havingonlypartofyourelephantnamedcanmakeithardertogethelpfortherest
• We’rebacktoavoidingtheelephantintheroom,butnowwehaveanametocoverit
• It’seasiertodownplayproblemsifyouhavesomesortofexplanationtoputthemunder
• Evenifthereasoningdoesn’tmakesense,theproblemshavetogetmuchbiggertobeseen
Theelephantinthesupportgroup• Youwon’tbetheonlyoneouttherewithapartialdiagnosisorthewronglabel
• Somesupportgroupsarefullofelephantsasking“Doanyothertreetrunkshavetusks?”andotherssaying,“Yes,lotsofusdo!”
• Actual‘treetrunks’lookingforhelpwith‘woodfungus’mightbecomefrustratedandconfused
• But,iftheytrytosuggestyoumightbemisdiagnosed,angryparentstellthem-“Youarenotlikemychild!”
Image– Schleich
Anelephantbyanyothername• Youmightbestalledwithapartialorco-morbiddiagnosis–dyspraxia,ADHD,OCD,sensoryprocessing
• Youmightbelikemeandhaveacoincidentalmedicalconditiondistractfromeverythingelse
• Itmightnotbemedicalatall– yourparentswentthroughadivorce– you’retransgenderorgenderrolenon-conforming– youchangedschoolsinthemiddleoftheyear– you’rea‘giftedandtalented’child
• Adultscanexplainawaytheelephantintheroom
Thekitchensinkintheroom?• Orperhapsyouoryourfamilykeeplookingforanswersafteryourfirstsingletraitdiagnosis
• Yougofromspecialisttospecialist,pokingyour‘elephant’througheverydooryoucan…
• Andeventually…
“Ihavetreetrunkism,bouldersyndromewithco-morbidrope,spearsdisease,serpantitis…ohandkitchensinkdisorder,nototherwisespecified”
TheelephantunderthesinkAccumulatingacollectionofdiagnosescanbeacluethatthere’ssomethingbiggerormorepervasiveunderlyingallofthem
Autisticpeoplewhokeep‘collectinglabels’afterdiagnosisaremorelikelytohaveanotherconditionthatautismisobscuring
Conversely,peoplewithotherdisabilitiesorchronicillnesses– diagnosedornot–maybemore
Image-Steamline
likelytoseekadultautismassessment
Theelephantinthepile
Andsometimesthere’smorethanoneelephant!Image– imgflip
ThediscussionthataccompaniesthistalkwillbeintheOBSGallery,todayat16:30
Natthemself@quarridors
quarridors.com