the elephant in the room - autscape.org · make it harder to get help for the rest • we’re back...

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