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Q1 When planning an assessment for ASD in a child, …bacdis.org.uk/membership/documents/ASD survey...

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BACCH News - ASD issue 1 / 39 61.86% 73 65.25% 77 61.86% 73 70.34% 83 37.29% 44 20.34% 24 51.69% 61 Q1 When planning an assessment for ASD in a child, what information do you request in advance? (tick all that apply) Answered: 118 Skipped: 0 Total Respondents: 118 # Other (please specify)/ further comments Date 1 This question is unclear - in advance of what? Our process always includes asking for any information THAT MAY BE AVAILABLE in advance, so SALT reportsetc if altready done. However, once a decision to underatke an assessment ismade, specialist SALT advice will be sought. EPsare involevde in 2 out of the 3 local authoritiesbut thisisn not commissioned and is being reviewed. Preschool children come to a general assessment group, and only HV information isrequested in advance. 2/10/2014 9:40 AM 2 It dependswhere the referral comesfrom. We have a collaborative approach here, specialist teachers, ed psychsand SLTsare almost alwaysinvolved, but not necessarily "before I see them"! 2/10/2014 7:34 AM 3 Not necessarily in advance but following the initial contact 2/9/2014 8:10 AM School Report Parental Questionnaire Educational Psychology Assessment... Specialist Teaching Assessment... Other (please specify)/... 0% 20% 40% 60% 80% 100% Answer Choices Responses School Report Specific School Questionnaire Parental Questionnaire Speech and Language Therapy Report Educational Psychology Assessment Report Specialist Teaching Assessment Report Other (please specify)/ further comments
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Page 1: Q1 When planning an assessment for ASD in a child, …bacdis.org.uk/membership/documents/ASD survey results.pdf · criteria for an ASD assessment on the school age ASD pathway. For

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1/39

61.86% 73

65.25% 77

61.86% 73

70.34% 83

37.29% 44

20.34% 24

51.69% 61

Q1WhenplanninganassessmentforASDinachild,whatinformationdoyourequest

inadvance?(tickallthatapply)Answered:118 Skipped:0

TotalRespondents:118

# Other(pleasespecify)/furthercomments Date

1 Thisquestionisunclear-inadvanceofwhat?Ourprocessalwaysinc ludesaskingforanyinformationTHATMAYBEAVAILABLEinadvance,soSALTreportsetcifaltreadydone.However,onceadecisiontounderatkeanassessmentismade,specialistSALTadvicewil lbesought.EPsareinvolevdein2outofthe3localauthoritiesbutthisisnnotcommissionedandisbeingreviewed.Preschoolchildrencometoageneralassessmentgroup,andonlyHVinformationisrequestedinadvance.

2/10/20149:40AM

2 Itdependswherethereferralcomesfrom.Wehaveacollaborativeapproachhere,specialistteachers,edpsychsandSLTsarealmostalwaysinvolved,butnotnecessarily"beforeIseethem"!

2/10/20147:34AM

3 Notnecessarilyinadvancebutfollowingtheinitialcontact 2/9/20148:10AM

SchoolReport

ParentalQuestionnaire

EducationalPsychology

Assessment...

SpecialistTeaching

Assessment...

Other(please

specify)/...

0% 20% 40% 60% 80% 100%

AnswerChoices Responses

SchoolReport

Specific SchoolQuestionnaire

ParentalQuestionnaire

SpeechandLanguageTherapyReport

EducationalPsychologyAssessmentReport

SpecialistTeachingAssessmentReport

Other(pleasespecify)/furthercomments

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4 Iworkacross3panels.InBlackburnwehavespecialistteachersinASDwhodoobservationsandreportbacktopanel;.Paediatric andSLTassessmentsamust.InHyndburnandBurnleywegetfeedbackthroughdirectcontactwithschool(visits)orgeneralquestionnaire

2/7/20142:42AM

5 IfEducationPsychologyreportisavailableoranylearningassessment.Idon'tusequestionnairesroutinelywithparentsbutdosometimes.

2/6/201411:50PM

6 Homevisit,i fpossiblebyspecialistnurserynurse. 2/6/201412:42PM

7 Childdevelopmentcentreplayroomassessment 2/6/201412:30PM

8 SDQSthepaediatric ianhastorequestSALTassessmentAFTERseeingthechild(dontask!) 2/6/20147:15AM

9 OTiftheyareknowntothem 2/5/201411:40PM

10 SALTreviewnotusuallyavailableforASCwithoutspeechdelay. 2/5/20148:53AM

11 Priortoassessmentthereisdiscussionwithschoolstaff,educationalpsychologistandfamilyreagreementtoassessmentforASD

2/5/20147:42AM

12 Reportsrequestedarenotalwaysavailableandthenreferralstotheagenciesmybeinitiatedtogathersomeofthis

2/5/20141:29AM

13 SALTinformationifavailable.N.B.EducationalPsychologyinHighalndhavewithdrawnfrominvolvementinASDAssessments.PHNinformation

2/4/20141:14PM

14 UsuallyInformationfromatleastoneothersettingoranothertherapistinvolved. 2/4/201412:40PM

15 Wehaveaconsentformforfamiliestocompletewhentheyentertheassessmentprocessspecificallytolookwhetherthechild'sdifficultiesareexplainedbyASD.AtthispointaS<wil lbecomeinvolved(ifnotalready)andtheywouldproduceareportoftheirthoughtsandfindings.

2/4/20149:25AM

16 Asaminimum,SALTandschoolquestionnaire-othersifanydiscrepancies/doubts/learningdelay

2/4/20149:14AM

17 doCASTAAASspecific socialcomminuication(SALT)assessmentsubsequentifappropriate 2/4/20147:55AM

18 wedonotrequestanythingbeforec linic visit.afterthisdependsonage.ifinschoolwerequestspecific schoolquestionaire

2/4/20147:01AM

19 Iamonlyinitial lyassessingpreschoolchildrenwithpossibleASD-andthentheywil lgointoourpathwayforformalassessmentbyaseniorSALTandPaediatric ianthenon.IwouldmakethedecisionofonwardreferralwiththeirSALTandHV-Imaygetareportfromnursery.

2/4/20146:47AM

20 thisiswhatIwouldl ikehoweveritisnotwhatIget! 2/4/20146:30AM

21 Paediatric iansreport(Generaldevelopmentalassessment) 2/4/20146:29AM

22 BecauseIworkinatertiarysettinginveryspecific c linics,notinc ludingthec linic thatreceivesovertreferralsforASDassessment,IhavegenerallyalreadyrequestedlocalSLT/SpecialistTeacherreportsbeforeIseethechildforthefirsttime.Itisoftenthenaquestionofnegotiatingtherelevanceofaddressingaspecific questionaboutASDwihtthefamily,beforeproceeding

2/4/20146:15AM

23 Alloftheaboverequesteddependingonwhetherornotthechildisknowntotheservice-ifnotknownthenanilreturnisobtained

2/4/20143:50AM

24 OTandc linicalpsychifavailable 2/4/20143:38AM

25 SchoolObservationreport 2/4/20143:35AM

26 Theotherinformationisrequestedaspartoftheassessmentdependentonreferralconcernsandparentalhistory.

2/4/20143:16AM

27 Nurseryquestionnaire-mostofoursarepreschool 2/4/20142:41AM

28 Mayaskforreportfromspecialistteacheroutreachteam 2/4/20142:29AM

29 Ioftenseechildfirstandrequestreportsafterinitialc l inic visit.Portageservicearefantasticandalsoprovideveryvaluablereports

2/4/20141:48AM

30 CanonlyrefertoSALTafterschoolreport 2/4/20141:29AM

31 Wedon'tacceptanyschoolagereferrals(ASDoranythingelse)withoutsomewritteninfofromschool.Wemightaskforanyoftheabovedependingonc ircs,butinitialpaedencounterwithapreschool"?ASD"childisl ikelytobeinageneric CDCwithnotalotofinfo.

2/4/201412:53AM

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32 Iftheyareavailable(wedonotalwaysdo/askfor/getalloftheaboveparticularlyparentquestionnaire)wealsohaveSocialcarereportifinvolved.NurseryreportifinnurseryandHVreport(andjuststartingtouseMCHAT)Alsohaveinformationfrompaediatric ian(inc ludingascheeduleofgrowingskil lsreport)

2/4/201412:28AM

33 askparentstopwriteareportalso.Edpsychwil lnotseechildrenatHeathrequest-theywil lhavetobeviacodeofpracticeproceduresviaschool.Specialistteacherreportisalsoviaschool

2/3/201411:03PM

34 Beforewestarttheassessmentwedon'taskforanythingelse,butinordertomakeadiagnosiswehaveameetingatwhichweaskschoolstafftobepresent,aswellaseitherS<orClinicalPsychologistwithareportformtheotherparty.

2/3/20142:28PM

35 SOGSinpreschoolchild 2/3/201412:32PM

36 schoolobservation 2/3/201412:06PM

37 Boththehomeandschoolquestionnaireshaveroomundereachsection(i.esocialistion,flexibil i tyofthnkingetc)-forfreetextandadditionalcommentswhichwefindmostuseful.TheschoolfrequentlysendanadditionalwrittenreporttotheGPwhichissentwiththeoriginalreferral.ThechildmayalreadyhavehadSALTorEd.Psych.assessment,previouslyforlearningorspeechandlanguageissues,whichwealsoconsiderbeforeconcludingifthechildfulfi lsthecriteriaforanASDassessmentontheschoolageASDpathway.Forpreschoolchildrenuptotheageof4,thereisa3session,(each11/2hourslonginvolvingsnacktimeaswell),playbasedmultidisc iplinaryassessmentinvolvingPaed.SALTClinicalPsychologist,OT,Physio(ifneeded)andaSpecialistHealthVisitor.Thelatterdoesapre-MDAhomevisitandifadiagnosisisgiven,apostMDAvisit.APsycologyassistantdoesanurseryobservation,ifthechildattendsasetting

2/3/201411:54AM

38 Occupationaltherapyreportresensoryissues 2/3/201411:34AM

39 ASDspecific referralform 2/3/201411:05AM

40 OccupationaltherapyassessmentreportAudiologyassessmentWearejuststartingtosendoutaparentalquestionnaire(ourown,notastandardisedone)

2/3/201411:00AM

41 developmentalassessment 2/3/201410:59AM

42 wehopetohaveanyoftheotheratassessmentifknowntothoseservices 2/3/201410:37AM

43 Idon'tusuallyaskfortheseinadvance,IoftenseeachildinoutpatientsfirstandthendecidewhatIneed.IwouldaskforEPandspecialistteachingreportifavailable.Wesometimeshavereportsfromcommunitynurseswhodoc lassroomobservations.

2/3/201410:27AM

44 wouldrequestmorebutdon'thaveaccesstoEPorSTAforautism 2/3/201410:16AM

45 Thechildappearsinc linic aftertriageandthenalltheaboveexceptEDPsych,SALT,andSpecialistteachingassessmentaresought,referralsmaybemadetoSALTandCATteamsuggestedtoschool

2/3/201410:04AM

46 CASTquestionnaire(childrensAspergerssyndrometest)Socialcommunicationdescriptorsfromschool

2/3/201410:03AM

47 WeusedtohaveEPinputbutthishasbeenstoppedduetolackofresources 2/3/20149:53AM

48 UsuallyworkwithS< 2/3/20149:37AM

49 dependingonage;mayaskforallofthesewhererelevant/avaialbe 2/3/20149:31AM

50 ifawareofchildwith?ASDcomingthenrequestinformationfromwhoeverisseeingchildattime

2/3/20149:29AM

51 psychometric assessment,eitherfromEdPsychorc linicalPsychifpreschool. 2/3/20149:22AM

52 OccupationalTherapyReportifavailable 2/3/20149:21AM

53 Allofthesesometimes,noneofthemalways 2/3/20149:10AM

54 Allofthesesometimes,noneofthemalways 2/3/20149:10AM

55 Ifwecangetholdofthem.Wehavegeneralquestionnairethatgoestoschoolstorequestinformationoncurrentpresentation.Theirusefulnessisdependantonthepersonfi l l ingthequestionnaire.

2/3/20149:09AM

56 ItwouldbegreatifwecouldreferforanEducationalPsychologyreport!!! 2/3/20149:08AM

57 SCQorMCHATNB:Iamnotdirectlyinvolvedindiagnosisbutinhelpingtocollecttheinformationpriortoreferralfordiagnosis

2/3/20149:01AM

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58 Weaskforothersthatschoolmayhave,wewouldalreadyhaveSALTinourfi lesanyway 2/3/20149:00AM

59 Iseefamiliesfirst,thenaskforassessments. 2/3/20148:59AM

60 earlyyearseducationteams-pleasenote-wemayrequestbutwemanotget 2/3/20148:58AM

61 Depedingontheresourcesavailabletotheschool,alloracombinationofsomeoftheabovearerequested

2/3/20148:57AM

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16.95% 20

14.41% 17

66.95% 79

18.64% 22

59.32% 70

Q2WhattoolsdoyouuseinassessingchildrenforASD?(Tickallthatapply)

Answered:118 Skipped:0

TotalRespondents:118

# Other(pleasespecify)/furthercomments Date

1 RarelyuseDISCOinpracticeastootimeconsuming 2/10/20149:40AM

2 -usedmainlyasatoolforresolvingquestionswithinthemultidisc iplinaryteam 2/10/20147:34AM

3 None-carefullyhistory,observation/interactioninc linic andobservationatschool/nursery. 2/10/20141:49AM

4 Someofmycolleaguesarediscotrained 2/9/20148:10AM

5 ClinicaljudgementagainstICD-10criteria,alsoDSM-V,supportedbyobservationalassessmentinsocialsettingbyspecialistSALT+/-educationalpsychologist

2/8/20147:58AM

6 None 2/8/20144:13AM

7 WeonlydoanADOSifunsureofdiagnosis,buthtisisrarelydone 2/7/20142:42AM

8 Notusedinallmyassessments. 2/6/201411:50PM

9 Directobservationinagroup...nurseryorschool. 2/6/201412:30PM

10 noneoftheabove-useaversionofannelecouteurquestionnairepublishedinnationalautisnplan2003

2/6/20147:15AM

11 Childcommunicationchecklist,Socialresponsivenessquestionnaire,socialcommunicationqustionnaire

2/6/20145:48AM

12 elementsofADOSusedinallcases,fullADOSforsome;structuredchilddevelopmentquestionnaire;

2/5/20148:48AM

ADI-R

3DI

ADOS

DISCO

Other(please

specify)/...

0% 20% 40% 60% 80% 100%

AnswerChoices Responses

ADI-R

3DI

ADOS

DISCO

Other(pleasespecify)/furthercomments

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13 Attier2leveltheassessmentsarecarriedoutbylocalcommunityteam,inc ludingspecificq'nairefromschool,parents/carers,SALT,c linicalpsychologist,educationalpsychologistandcommuitypaed.AmeetingisheldtodiscussreportsandgothroughICDcriteriaforASD.Ifthereisnoc learoutcome,thechildisreferredfortier3assesswhenADOS,+/-ADIandpsychometric assessarecompleted

2/5/20147:42AM

14 StandardDevelopmentalTestingonGMDS-ER 2/5/20146:29AM

15 Noneareusedinourteam,thougtalkingofdoingADOStraining 2/5/20141:29AM

16 NotallrequireADOS 2/4/20141:14PM

17 AideMemoire(LeCouteur)combinedwithdevelopmentalhistory,ASDspecific schoolquestionnaireandSALT+EdPsychinfoifavailable

2/4/201412:47PM

18 AutisminterviewbasedonADI(notfullADI-R)Alsofindcognitiveassessmentorbayleysusefultoprofi leverbalandnonverbalprofi le.

2/4/201412:40PM

19 owndevelopedquestionairebasedonICD10 2/4/201412:36PM

20 Gillbergcriteria,ICD10 2/4/201410:29AM

21 ParentalinterviewbasedonDISCObutshorter 2/4/20149:14AM

22 ModifiedADIonlySpecialistSALTuseADOSselectively 2/4/20148:40AM

23 ADOsoccassionallyifdifficultieswhereschoolorprofessionalsdifferinopinion. 2/4/20147:01AM

24 ADIusedbyourpathway-ADOSfromCAMHSifweaskforadditionalinformation 2/4/20146:47AM

25 CASTquestionnaire 2/4/20146:41AM

26 noneatthemomentbutrelatethehistoryandobservationtoDSMvICD10criteriahopingforspecific training

2/4/20146:30AM

27 GARS&SCQtoelaboratehistory 2/4/20146:29AM

28 Iworkprinc ipallywithchildrenwithmotor/speechimpairmentorvisualimpairmentsostandardmaterialscannotalwaysbeused.Diagnosisdependsondetailedhistorytaking,cognitiveassessment,observationofplayandcommunication

2/4/20146:15AM

29 Wedonotalwaysuseaspecific toolbutusespeechandlanguagereport,ASDadvisaryteacherobservationandhistoryandobservationsdoneinPaediatric c linic andmultiagencyprofessionaldiscussionatSCDpaneltomakediagnosis.WeuseADOSinspecific caseswhentherearedifficultiesinarrivingatdiagnosiswithfurtherassessmentsbyEdPsychology/OT/c linicalpshychology/coventrygridasrequiredinindividualcases.

2/4/20145:52AM

30 Abridgedhistorywherenecessary-seldomusethefullDISCO 2/4/20143:50AM

31 useCARSasabasisforschoolobservations 2/4/20143:38AM

32 Detaileddevelopmentalhistoryinc ludingsensorydifficulties 2/4/20143:21AM

33 ADI-Raidememoire(fromHelenMcConachie) 2/4/20143:16AM

34 ICD-10criteria-notatoolassuchbutallweuse! 2/4/20142:41AM

35 Proformadevelopedin-house 2/4/20142:29AM

36 UsuallynostandardisedtoolsbutICD10criteria.OccasioinallyADOS/3Di 2/4/20142:00AM

37 ModifiedADIasoutl inedinNAPSIreportanddiscussedwithAnneLeCouteur 2/4/20141:48AM

38 Ionlydiagnosestraightforwardcases,otherarereferredtospecialistc l inic 2/4/20141:29AM

39 IamtrainedinbothDISCO&3Dibutdonothavetimetouseininitialassessments.Myinitialisthereforetailoredhistorybasedonthese+attemptatdevassmtbasedonGriffi ths.SubsequentlyallcasesdiscussedbyexpertteamagainstICD/DSMcriteria

2/4/201412:53AM

40 Acognitiveassessmentisusuallyundertakenwiththechild/\YPandtheonechosenisdependentonageanddevelopmentalprofi leofchild.Alsospeechandlanguageassessmentifneeded.Wegenerallyhaveamultidisc iplinaryassessmentthatmayinc ludeinputfromapaediatrican,psychiatrist,psychologist,SALT,OTorSpecialistnurse(thetypeofassessmentisdecidedatthereferralmeeting(wecalli tautismpanel)Thosewithc learcutautismarealsoreferredintopanel(soweareawareofallchildren)andweseereportsfromthoseinvolvedandendorsetheprofessional's(usuallypaediatirican)decisionsoavoidingduplicationandtimedelaystoparentsandchildren

2/4/201412:28AM

41 havetobeselectiveasunabletouseADOSforallduetotime 2/3/201411:18PM

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42 locallydevisedquestionnaire 2/3/201411:03PM

43 ASSQ;ABCKnowlimitationsbutwellexperiencedandquickbutnotconsidereddiagnostic 2/3/20144:15PM

44 Wedon'tusespecific toolsinmostcases. 2/3/20142:28PM

45 autismspecific historypreschoolandschooladosl ikeassessment 2/3/20141:44PM

46 InformalplaybasedassessmentundertakenbySLTwith(unvalidated)autismspecificquestionnaire

2/3/20141:24PM

47 CARS 2/3/201412:11PM

48 sometime,disco 2/3/201412:06PM

49 Wefindthatinselectedchildren,schoolobservationsareveryuseful.ThisisdonebyaNursePractioner,StaffGradePaed.orConsultantPaed.

2/3/201411:54AM

50 none 2/3/201411:45AM

51 DuetobeADOStrained.Atthemomentweuseafullmultidisc iplinaryteamapproachwithadiagnostic discussion.

2/3/201411:34AM

52 Differentmembersoftheteamusedifferenttools 2/3/201410:59AM

53 Andgoodoldfashionedtalkingtootherprofessionalswhoknowthechild,anddirectobservationoutsidethec linic setting.

2/3/201410:27AM

54 adirandADOsatpresentforthosereferredforAutismdiagnosticserviceassessment;potentialplansforADOSbySLTforallonSCDpathway(Commissionersyettoagree),andADItrainingforallpeads(ditto);atpresentnoformalisedassessmentavailableforrest

2/3/201410:16AM

55 CAST,CHAT,DSM,CBCL-asscreeningandc linicalassessmentandschoolreports 2/3/201410:04AM

56 Clinicalassessment 2/3/201410:03AM

57 LocalityAssessmentinthefirstinstance.IhavejustbeentrainedinADOSbutproblemwithmyteamgettingfundingwithakit.SoifLAdifficultreferredcentrallyforADOS.

2/3/20149:53AM

58 workwithS<andtheyhavespecific tools 2/3/20149:37AM

59 workwithS<andtheyhavespecific tools 2/3/20149:36AM

60 NAPCappendixquestionniare 2/3/20149:31AM

61 CARS,GARS,GADSuseofwhichtestdependentonindividualchild 2/3/20149:29AM

62 Mainlysti l l refertoCAMHSbuttheyarepassingovertous.Theyarekeenthatwedonotusetools!ithinkweareoutofsteponthisone.

2/3/20149:22AM

63 Carsassessment 2/3/20149:21AM

64 Ownlocallydesignedquestionnaires 2/3/20149:10AM

65 Ownlocallydesignedquestionnaires 2/3/20149:10AM

66 ADOSonlyusedinspecific cases.Athoroughdevelopmentalhistoryandc linic observationaswellasschoolinformationandotherprofessional'sinformationisoftenenough.

2/3/20149:09AM

67 ASQ+ASDobservationproformaADOSindifficultcases 2/3/20149:08AM

68 Iuseaspecific schoolquestionairedevelopedbyouredpsychslocally 2/3/20148:59AM

69 autismspecific questionnairesCARS 2/3/20148:58AM

70 UniversityofCambridgesoxialandcommunicationdevelopmentquestionnaire 2/3/20148:57AM

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Q3Whichtoysorgamesdoyoufindusefultohaveinyourclinicwhenassessing

childrenforpossibleASD?Answered:105 Skipped:13

# Responses Date

1 Dollsandcharactertoys 2/10/20141:39PM

2 Dependsonage!!Allpre4schoolassessmentsareplaybased-veryusefultoysforpreschoolersinc ludebeadcurtain,spinningbells,3-shapesorterwithsqueak,toykitcheneqipment...

2/10/20149:40AM

3 noparticulaerfavourites-Imainlyseeschoolage-acolleagueseesthepreschoolers 2/10/20147:34AM

4 ADOSkitforADOS,otherwisemakeuseofwhichevertoysavailableinc linic roomthatday. 2/10/20142:32AM

5 Varietyofcnstruction/roleplaytoys.Booksapropriatetodevelopmentalage. 2/10/20141:49AM

6 usualdevelopmentallyappropriatetoys 2/9/201411:42AM

7 Noparticularone 2/9/20148:10AM

8 Noneinparticular! 2/8/20147:58AM

9 Teaset,doll 'shousewithdollsoranimals,carsortrains,j igsawsforvariousages;books;gradedbeakers

2/8/20144:13AM

10 JustthetoysfromtheADOS 2/7/20142:28AM

11 Griffithsboxandahouseset,ADOSbox,cars,dolls,foodset.. 2/6/201411:50PM

12 Ifindhomecornerusefultolookatimaginativeskil ls,j igsaws,colouring. 2/6/201412:42PM

13 Various.Toystohelpassessthedevelopmentallevelandtypeofplay. 2/6/201412:30PM

14 dollshousesbricks 2/6/20147:15AM

15 cars,trains,causeandeffecttoys,sensorytoys,spinningtoys 2/6/20145:48AM

16 sensorytoys,books,imaginativeplaytoys 2/5/20141:55PM

17 Symbolic playisassessedwithtoyssuchastelephone,cars&garageset,teaset,farmanimalsetc.

2/5/201411:29AM

18 Dependsonage-Cars,dinosaurs,bitsfromADOS.Oftentendtoinvestigatetoysdesignedforyoungerchildren

2/5/20148:53AM

19 rangeofsensorytoysGriffi thsmaterials/similardrawingmaterialsballoons,bubblesandcardboardtubesforyoungerchildren

2/5/20148:48AM

20 ToysareusedaspartofADOSifthisisrequired.InpreschoolchildrenIwoulddoaGriffi ths+/-nurseryobservation.

2/5/20147:42AM

21 GriffithsTestKit 2/5/20146:29AM

22 avariety-musicaltoys,toysthatspin.popuptoy.car/tractors,miniaturetoys-telephoneetc., 2/5/20146:21AM

23 dollshouse 2/5/20144:10AM

24 Kitchencorner,dollshousecarsetctolookatpretendplayskil lsinpreschoolchildren.ForolderchildrenhavesharedHappestoriesandRinaldipic tureaswell.

2/5/20141:29AM

25 Generaltoys 2/5/201412:17AM

26 Bookswithonlypic turesToystoallowimaginativeplayCars,otherthingsthatspin 2/4/201412:47PM

27 Causeandeffecttoys,symbolic toysinc ludingplaykitchen,sensorytoys,doll,cars/trains,blocks.

2/4/201412:40PM

28 dependsonagegroupandmembersoftheteamavailable 2/4/201412:36PM

29 Dependsonageofchild;blocks,tea-sets,smallworldforyoungerchildren.Usuallyhavea'ScheduleofGrowingSkil ls'

2/4/201410:29AM

30 smallfigurepretendtoys,animalsetc.Causeandeffect,pretendphones,teaset. 2/4/20149:25AM

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31 NothingASDspecific althoughthebooksaremorel ikelytobeaboutdinosaursorThomastheTankengine.Ihaveapiratemaponthewallwhichisquitepopular.

2/4/20149:24AM

32 NowthatweuseADOS,notmuchelsetoassessbutalwayssometransportrelatedtoyswhenfeedingbacktoparentsattheend.

2/4/20149:14AM

33 ADOSrelated;arangeofdevelopmental 2/4/20148:40AM

34 causeandeffecttoys;roleplayactivitiesADOSuti l isingpredeterminedresources 2/4/20148:24AM

35 Youngerchildren-il iketohavesomepracticalbuilding/puzzlestypestuffbutthentoysthatcanbeusedinimaginative/pretendplay.Olderkids-dontgenerallyusetoysunlessdoingADOS

2/4/20147:55AM

36 farmanimals,garageset,dolls 2/4/20147:20AM

37 cars,trains 2/4/20147:01AM

38 WehavearangeoftoysforchildrenandYPfrom0-19inourc linic -inc ludingthoserequiringimagination-dolls,cars,hairbrushes,teasets(universallylovedby2.5-4yearolds),acomputerwithinteractivegames,playstationsandbooksforolderchildren.ABarbiecampervanisafavourite.

2/4/20146:47AM

39 vehic lesspinningtoyssensorytoys 2/4/20146:41AM

40 bookswithnarrativesandsimpleronesforlabell ingdolls,teddiesetcforpreetndplayhoweverthec linicsweusemayhavenoequipmentinthem

2/4/20146:30AM

41 Toysappropriateforthechildsdevelopmentallevelplusbaloonsandbubbles 2/4/20146:29AM

42 Awholerangetospanfromcause-effecttypetoys,tocomplexpuzzles,books,andthefamily'sowniPad.'Toys'forolderchildrenwithorwithoutlearningdifficultiescanbeachallenge

2/4/20146:15AM

43 Itdependsonageofchild.Under5yearsIuseeitherSOGSorGriffi thstohelpidentifydevelopmentalskil lsandconcernsbutthenalsocanaskforPortageservicesandothersupportservicestohelpwithidentifyingproblemsandhelpsupporttreatments.Olderchildrenismainlybydiscussionwithchildinc linic andhistorytaking.

2/4/20145:52AM

44 ThisdependswhetherweareattheinitialpartoftheM-DASDassessmentpathwayorjustafirstassessmentbecauseofconcernswithoutbeingreferredtoASDservice.IfindGriffi thsveryusefulasaframeworkfortheyoungerchild-uptotehageofapprox8

2/4/20143:50AM

45 Various--cooneect4,playingcards,andmodelsofanimals,carsetc 2/4/20143:38AM

46 booksandpicturestolookat/discuss.Ioftenjuststartaconversationwitholderchildren,toseehowinteractivetheyare.IwouldassesspreschoolchildrenusingtheSOGS,sowouldusetoysfromthat.

2/4/20143:35AM

47 Don'tusespecialtoys.Justhavenormaltoysinc linic sothatcanwatchwhiletakinghistory.Igenerallyfindthatobservationinc linic isnotveryhelpfulunlesschildhasveryobviousASDtraits.Willlookforthingsl ikehandasatoolorcoordinationeyecontact,gesture,andvocalisationinyoungerchildren.InolderchildrenmayasksoquestionsfromADOSortryconversation.

2/4/20143:16AM

48 Noroutinelyusedtoys/games.Somec linic roomshavetoyspresent,butIfindthattheyareofteninterestedintheirowngamesystems/toys.

2/4/20142:49AM

49 usualc linic toys-lego,puzzles,babytoys,Griffi thskitfordevelopmentalassessment(don'tdofullGriffi thsusuallybutformboards,blocksuseful),paperandpencils

2/4/20142:41AM

50 ADOStoys 2/4/20142:32AM

51 simpleboardgamestoallowassessmentofturntakingandsharingconstructiontoyswhichcanbringoutrigidbehaviorsplaymobiletoysandotherminiaturetoysegteasettolookatimaginativeplaybookstofac il i tateconversation

2/4/20142:29AM

52 Duplo/stic lebricks,pretendplayegdollshouse,anddependantontheirinterest 2/4/20142:00AM

53 Cups,platesetc,doll 'shouseandfurniture/charactersetc/trainandtrack/cars/babydollandbed/buildingbricks/puzzles

2/4/20141:48AM

54 Griffithskit+extrabricks,crayons,toycars,shinybeads,ball,books 2/4/201412:53AM

55 Varietyasseewholerange,formsensorythroughtobooksondinosaurs! 2/4/201412:28AM

56 nospecific toys 2/4/201412:11AM

57 Books,bricks,cars,evenc linic furniture 2/4/201412:00AM

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58 YOUchoosebookreallyhelpfulBubbles/BalloonsforyoungerchildrenAnytoythatcanbeshared

2/3/201411:18PM

59 WendyHouse(someliketohideinthem),cars,trains,shinymirrortypeoftoysforbaby,repetitivetoysslidingobjectrepetitively,samplegiventomebyarep(Enfamilformula)strangelyenoughisverymuchlikedbysomechildrenwithsensoryissues)!!

2/3/201411:03PM

60 crayons,brick,cars,bubbles 2/3/20148:28PM

61 Aball;pic turebook;(othergeneraldevelopmenttoys) 2/3/20144:15PM

62 Developmentalassessmentkits-elementsofGriffi thsorBailey's.MinaturetoysDuplo 2/3/20142:28PM

63 Dolls,pencil&paper,teaparty 2/3/20142:18PM

64 buspuzzlepreschoolsomeofgriffi thsfreeandstructuredplaytoydoganddollandteapot 2/3/20141:44PM

65 toysusedforADOSassessment 2/3/20141:28PM

66 EssentiallyitemsthatarefromtheADOSmodules.Under5steasetanddollybubblesetcareuseful,causeandeffecttoysetc

2/3/20141:24PM

67 none 2/3/20141:14PM

68 flushingsensorytoy 2/3/201412:55PM

69 Forpre-schoolchildrenIusuallyhavetoyswhichmightencouragementuseofimaginativeplaye.g.tea-set,dollshouse,pirateshipwithminiaturefigures

2/3/201412:53PM

70 Notoysinmostc linics.AnIpadcanbeusefultoentertainwhilsttakingtoparents 2/3/201412:40PM

71 Bubbles,l i ttletoysegdollshousefurnituretotestsymbolic play,pretendplay,bookwithdifferentfac ialexpressions,emptytubeofsmartiesforSmartieappearancerealitytask

2/3/201412:32PM

72 Cars,bricks,toykitchen,dolls 2/3/201412:11PM

73 POPUPTOYS,TRAINS,TRACKS,etc 2/3/201412:06PM

74 pretendfoodandcooker,teasetanddollsorTeddies,vehic lesandacarrun,farmanimals,Dollshouse

2/3/201411:54AM

75 ActionfiguresDollsBooks 2/3/201411:46AM

76 Puppets,squashyrubberdragon,cars,trains,stackingtoysofdifferentcolours. 2/3/201411:34AM

77 paperandcrayons/pencilsfordrawing 2/3/201411:05AM

78 Trains!Andbubblesarevital.Oneofthebesttoysforthel ittleonesandfortheveryautisticolderoneswithSLDisthefisherpricestackingstarsthatplayaseriesoftunesandhaveflashinglights.Butit'salsousefultohaveproperpretendplaytoysaroundandtobeabletohidethetrains-soIhaveteasets,l i ttlepeopleandanimals,adolls'house,etc.

2/3/201411:00AM

79 wedoafullDevelopmentalassessmentbeforehandthereforeweonlyneedaDISCO/ADIwiththeADOS

2/3/201410:59AM

80 smalltoystomakeupstorybooktoassesshowthechildrelatestoexaminerandpicksupstoryandemotionstoystouseinsmalerchildrentoshowpretendplay

2/3/201410:37AM

81 Dependsonthechild,ageandinterests.Forpreschoolersavarietyoftoysthatmightencouragespontaneousimaginativeplay(butnottoomany),books,bubblestodistractiftheygetupset.Similarforschoolagechildren.AlthoughIdon'twanttoomanytoys/activitiesIfinditusefulwhentakingahistorytoobservewhichtoysachildplayswith,iftheydeveloptheirplayandexploreavarityofthings,dotheygetstuckwithrepetitiveplay,howoftendotheyapproach/involveparents.

2/3/201410:27AM

82 Griffithsnonverbalotherwisemyroutinedevtoysavailable;somethingtoseerangeofplay 2/3/201410:16AM

83 Observationofinteractionwithparents,myselfandmodeofplaywithtoysorthingsintheroomandgeneralsensitivity

2/3/201410:04AM

84 storybooksinvolvingtalkingaboutfeelings 2/3/201410:03AM

85 Toysthatcanbeusedforimaginativeplaybutalltoysarefrowneduponbecauseofinfectioncontrol

2/3/20149:53AM

86 Varietyofdifferenttoysdependingonageanabil i ty 2/3/20149:37AM

87 Varietyofdifferenttoysdependingonageanabil i ty 2/3/20149:36AM

88 nilspecfic 2/3/20149:31AM

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89 standardtoys,blocksetc 2/3/20149:29AM

90 Thinksthatcanbeusedforroleplayorimmaginatiniveplay,egphone,teaset. 2/3/20149:22AM

91 Roleplayegteacups 2/3/20149:21AM

92 Ageappropriatetoys--IonlyseepreschoolchildrenforautismassessmentsWouldhavefairlystandardthingsl ikedollandteaset,blocksandpuzzles,somecauseandeffecttoysWouldtendtokeepthingsl ikecarsoutofthewayinitial ly.Alsohaveaballchutewhichtendtoproduceforthosechildrenwhogetupsetinthec linic situation

2/3/20149:21AM

93 N/AiffullASDassessmentrequired,goestoASDTeam 2/3/20149:21AM

94 AdosToyphones,puppets,dressingupc lothes,2persongamesegconnect4,guesswho,pinart,tummyache

2/3/20149:10AM

95 AdosToyphones,puppets,dressingupc lothes,2persongamesegconnect4,guesswho,pinart,tummyache

2/3/20149:10AM

96 Teaset,buildingblocks,paperandpen,Lego,teddiesordolls 2/3/20149:09AM

97 Figures/books/cars 2/3/20149:08AM

98 Don'tuseanythingdifferenttostandardCDCassessmenttoys,unlessforformalADOS. 2/3/20149:05AM

99 imaginativeplaytellasequencestory 2/3/20149:03AM

100 miniaturefigures,cars 2/3/20149:03AM

101 ADOStoys 2/3/20149:01AM

102 Weahvearange,nonspecific aswedoallages,formalassesmentusesADOStoys,dollshousetypetoysuseful,Bubblesfortheveryyoungmaybeallthatworks

2/3/20149:00AM

103 Thec linic nurseengagestheminplaywhichIobserve.Theyusuallytrytoinc ludeimaginaryplay.

2/3/20148:59AM

104 beadtoys'magicstick'brickscars 2/3/20148:58AM

105 TheADOSpackortoyssimilar,pic turebooks,storytell ing 2/3/20148:57AM

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Q4DoyouuseanyiPADAppsandifso,whichones?

Answered:108 Skipped:10

# Responses Date

1 No 2/10/20141:39PM

2 NoiPadavailableinsessions 2/10/20149:40AM

3 no 2/10/20142:32AM

4 None 2/10/20141:49AM

5 NO 2/9/201411:42AM

6 No 2/9/20148:10AM

7 No 2/8/20147:58AM

8 No 2/8/20144:13AM

9 No 2/7/20142:28AM

10 No 2/6/201411:50PM

11 Notauthorisedbythetrust. 2/6/201412:42PM

12 No. 2/6/201412:30PM

13 no 2/6/20147:15AM

14 no 2/6/20145:48AM

15 no 2/5/201411:40PM

16 none 2/5/20141:55PM

17 no 2/5/201411:29AM

18 no 2/5/20148:53AM

19 no 2/5/20148:48AM

20 No 2/5/20147:42AM

21 No 2/5/20146:29AM

22 no 2/5/20146:21AM

23 no 2/5/20144:10AM

24 No 2/5/20143:54AM

25 NO 2/5/20141:29AM

26 No 2/5/201412:17AM

27 Notsuppliedthereforecannotuse. 2/4/20141:14PM

28 no 2/4/201412:47PM

29 No,butwouldbeinterestedtohearmoreaboutthis! 2/4/201412:40PM

30 no 2/4/201412:36PM

31 No 2/4/201410:29AM

32 no 2/4/20149:25AM

33 No 2/4/20149:24AM

34 No 2/4/20149:14AM

35 no 2/4/20148:40AM

36 No 2/4/20148:24AM

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37 no 2/4/20147:55AM

38 no 2/4/20147:20AM

39 nowecanhardlyaffordcomputersforstaffsohighlyunluckytohaveipads.mytoyshadtobesuppliedbytheWRVS!!!!

2/4/20147:01AM

40 No-butwouldbeusefultoknowofany! 2/4/20146:47AM

41 no,wearenotprovidedwithanipad 2/4/20146:41AM

42 none 2/4/20146:30AM

43 No 2/4/20146:29AM

44 IfindparentstendtobringthefamilyiPadifi tisanimportantsourceofplayforthechild 2/4/20146:15AM

45 no 2/4/20145:52AM

46 No-althoughIdoreferencethesewithparents.InadditionIhaveaccesstoanAppwheelhoweverit'ssourceisnotknown

2/4/20143:50AM

47 no 2/4/20143:38AM

48 Noaccesstoipads 2/4/20143:35AM

49 No. 2/4/20143:16AM

50 Noneduringtheassessmentprocess 2/4/20142:49AM

51 No 2/4/20142:41AM

52 No 2/4/20142:32AM

53 n/a 2/4/20142:29AM

54 no 2/4/20142:00AM

55 No 2/4/20141:48AM

56 No 2/4/20141:29AM

57 No 2/4/201412:53AM

58 Notyet 2/4/201412:28AM

59 none, 2/4/201412:11AM

60 No 2/4/201412:00AM

61 Idon'thavethem 2/3/201411:03PM

62 no 2/3/20148:28PM

63 No 2/3/20142:28PM

64 No 2/3/20142:18PM

65 no-whattheyhaveonatheirtablets 2/3/20141:44PM

66 no 2/3/20141:28PM

67 No 2/3/20141:24PM

68 none 2/3/20141:14PM

69 no 2/3/201412:55PM

70 No 2/3/201412:53PM

71 Dependsonage.Peppapigisalwayspopular! 2/3/201412:40PM

72 No 2/3/201412:32PM

73 No 2/3/201412:11PM

74 NO 2/3/201412:06PM

75 No 2/3/201411:54AM

76 No 2/3/201411:46AM

77 No 2/3/201411:34AM

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78 No 2/3/201411:05AM

79 arethereany? 2/3/201411:00AM

80 no 2/3/201410:59AM

81 no 2/3/201410:37AM

82 No,althoughoftenparentsgivethechildaniPadtokeepthemdistracted.Ifindthisquitedifficultasthatdoesn'tallowmetoassessasabove.

2/3/201410:27AM

83 no 2/3/201410:16AM

84 no 2/3/201410:04AM

85 No 2/3/201410:03AM

86 No 2/3/20149:53AM

87 No 2/3/20149:43AM

88 No 2/3/20149:37AM

89 No 2/3/20149:36AM

90 no 2/3/20149:31AM

91 no 2/3/20149:29AM

92 no 2/3/20149:22AM

93 No 2/3/20149:21AM

94 noParentsoftenbringownormobilephone 2/3/20149:21AM

95 N/A 2/3/20149:21AM

96 No 2/3/20149:10AM

97 No 2/3/20149:10AM

98 Donothaveaccesstothisinc linic 2/3/20149:09AM

99 No 2/3/20149:08AM

100 No. 2/3/20149:05AM

101 no 2/3/20149:03AM

102 no 2/3/20149:03AM

103 No 2/3/20149:01AM

104 No 2/3/20149:00AM

105 no 2/3/20148:59AM

106 no 2/3/20148:58AM

107 No 2/3/20148:57AM

108 No 2/3/20148:56AM

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Q5Howdoyouexplainthediagnosistoparents?

Answered:111 Skipped:7

# Responses Date

1 Feedbacksessionafterdiagnosisfordiscussionandprovidewritteninfopack 2/10/20141:39PM

2 ExplanationofwhatASDis,natureofspectrum,strengthsanddifficulties,difficultiespredictingfutureetcetc

2/10/20149:40AM

3 dependsonage;however,thecollaborativeapproachgenerallymeansparentshavebeenwellpreparedbeforediagnosisgiven

2/10/20147:34AM

4 usingtriadofimpairementsandexplainingthese,somehandoutsfromNASwebsite. 2/10/20142:32AM

5 Carefully.Usuallyoffertoseebothparentsathomewithinn1-2weeksofdiagnosistogothrougheverythingagain.

2/10/20141:49AM

6 Consultantwithparentsfacetoface.1hr. 2/9/201411:42AM

7 DescribingthefeaturesofASDandwhichthechildmanifest 2/9/20148:10AM

8 Iexplainthatautismspectrumdisorderisnotani l lness,thattheirchildisnotmadorbad,ratherthattheyseeandunderstandtheworlddifferentlyfromtheirpeers.Iemphasisethatitisnottheirfault.

2/8/20147:58AM

9 Notsurewhatthisquestionmeans 2/8/20144:13AM

10 Feedbackona1;1withparetns.Insomecasesanyotherprofessionalinvolvedwithtehassessmentisalsoinc luded.IfatCDCwholeteamavailable

2/7/20142:42AM

11 Ataspecific feedbackmeeting,withoutthechild.Wetrytohave2c linic ianspresent.wegothroughtthereportwiththem.Itusuallytakesanhour.

2/7/20142:28AM

12 Italkaboutthedifferentareasofimpairmentandhowthismightexplainthedifficultywiththeirchild.Wetalkaboutthevaryingimpactthroughtheages.Wediscussthegenetics.Wehavealocalservicethatsupportsparentspostdiagnosis.

2/6/201411:50PM

13 Iexplainonsimpletermsthetriadofsymptoms,ICD10criteria. 2/6/201412:42PM

14 Afteramulti-disc iplinaryteammeetingwiththeparents,ascertainingfirsttheparent'sviewsandunderstandingoftheirchild'sproblems.

2/6/201412:30PM

15 explainoverlapwithLD/dyslexia/othercomormodities.usethewingtriadsofar!summariseobservationsmadebyothersmyselfandquestionnaire

2/6/20147:15AM

16 aconditionthattakesmanydifferentforms,notaspectrumbutratheran'umbrella',Youcouldput100childrenwithautisminaroomandnotwowouldhaveexactlythesameprofi lebutallwouldsharethesamekeyfeaturesconsistingofdifficultieswithcommunication,socialinteractionandrepetitiveandrestric tedbehaviours.Yourchildwil lneedmuchmoresupportthanchildrenwithoutASDtomakedevelopmentalprogresswiththeirsocialcommunicationskil lsastheseskil lswil lnotcomenaturallytothem.

2/6/20145:48AM

17 Iwil lhavehaddiscussionaboutASDingeneralatthetimeofstartingtheassessment.Feedbackattheendoftheassessmentisaccompaniedbyansweringanyquestionstheyhaveandgivinginformationtotakeaway

2/5/201411:40PM

18 Iexplainthatitisadisorderincommunicationthataffectsrec iprocalsocialinteraction.Ifocusonthepositivesbutalsohighlighttheareasthatleadmetodiagnosis.Iusethespectrumrainbow.

2/5/20141:55PM

19 FollowguidelinesforDisc losureofdiagnosisfromRightfromthestart,Childrendeservebetteretc.Provideverbal&writteninfoonthecondition&servicesinthelocality&howtoaccessthem.InfoonKeyworker.

2/5/201411:29AM

20 Discusscoreareas&howtheirchildhasfeaturesinthesetypicalareasthatexplaintheirapproach.

2/5/20148:53AM

21 askwhattheyknow/understandusestandardcriteria,usuallyICD10orDSMVandgothroughmyfindingswithSALtpresentwhoalsocontributes

2/5/20148:48AM

22 FeedbackisgivenjointlybyhealthandeducationandASDinfopackisgiven 2/5/20147:42AM

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23 Yes. 2/5/20146:29AM

24 explaininperson,aboutthebehavioursobservedandtheimpairmentsseeninthechildandusetheDSMVcriteriatoseesifachildfulfi l lsthecriteria.alsoexplainthatthebrainprocessinformationquitedifferently,andcanbeverysituationspecific andvariablefromtimetotime.

2/5/20146:21AM

25 ? 2/5/20144:10AM

26 Verballyandwritteninformationinc ludinginformationaboutNASandparentsupportgroupslocally

2/5/20143:54AM

27 Converstationbasedaroungtriad.InformationbookletswhicharelocallyproducedAccesstoNASwebsite

2/5/20141:29AM

28 TalkaboutICD-10criteriahaving3sections.Usuallybythetimeofdiagnosistheyareexpectingit

2/5/201412:17AM

29 Asassessmentgoesalong.HighlandhasCHIP+-ChildrenintheHighlandsInformationPoint-whoprovideaPackforParentswhosechildrenareundergoingassessmentandaPostDiagnosisPack.IdescribeASDasSpectrum,comparetoarainbow,no2onsamespot,differencesindegreesofdifficultiesandlearningabil i ties.Describesocialinteraction/socialcommunication/imaginationorflexibil i tyofthoughtplusotherrepetitivestereotypedbehaviours/sensoryissues.

2/4/20141:14PM

30 Ifindmostofthemalreadyhavesomeunderstandingandhaveconsideredit.Breakitdownintothetriad,relateittothechildandtheirstrengths/difficulties,talkabouthowitisl i felongbuttheprofi leofdifficultiesl ikelytochangeovertime

2/4/201412:47PM

31 Diagnosisisfedbacktoparentsby1-2membersofassessmentteam.Theconsultationvariesdependingonparentalneedandquestionsbutasaminimumincludesexplanationofautismrelativetotheirchild,strengths,difficulties,needsandrecommendations.Areportiscollatedandsentoutandamemberoftheteamdoesafollowupvisit6weekslater.

2/4/201412:40PM

32 bysummaryofchildweaknessandstrenghtsaccordingtoobservation,socialdevelopmenthistoryandreportsavailable

2/4/201412:36PM

33 Dependsonthefamily,usuallyinac linic sessionwithSpeechtherapistorotherprofessional 2/4/201410:29AM

34 Feedbackmeetingaftertheassessmentiscomplete.thereafterawrittensummaryreportwithcopiesofrelevantindiviualreports(S&L,educationalpsychologyifinvolved)

2/4/20149:25AM

35 Atthebeginning,Iascertainthattheyunderstandwhyweareallpresent:tosupportthechildthedevelopsociallyandwiththeireducation.Bothforthosewhoarepushingforadiagnosisandforthosethatarefearfulofone,Isaythatweneedtomeetinternationallyrecognisedcriteria(theICD-10)andthatitisnotaboutafewwomeninac linic sayingthatheisorisn'tabitautistic .Isaythattherearenotrulyfixedcut-offs,evenwhenusingtheADOS(whichIalsodescribe)butthatthebestcut-offtouseiswhetherthechildcannotfunctionineachparameterwithoutsupport.Attheend,Ire-iteratethatthepurposeofthec linic istomoveforwardinsupportingthechildandnotaboutgivingthemalabel.WiththesesortofprovisosIgenerallyavoidthec lashthatcanoccurwhentheparentswantdifferentthingsfromtheprofessionals-althoughobviouslyoccasionallytheyarenothappy-usuallythosewhodon'tgetadiagnosiswhentheywantedone.

2/4/20149:14AM

36 carefully! 2/4/20148:40AM

37 talkaboutthedifficultieswithinteraction/communicationandtheRBBsandhowthisformsapatternofdifficultiesthatsitwithinASD.Couldntposssayinthisboxwhatisayindetail!!!

2/4/20147:55AM

38 multidisc iplinaryfeedback 2/4/20147:20AM

39 Withempathyandunderstanding.wereferthemtoourautismcoordinatorwhocanfurthersignpostthemforinformationandsupportinc ludingAutismWestMidlands.Wealsosendoutanextensiveinformationpack.mostdiagnosiswefollowup3monthslater.

2/4/20147:01AM

40 PathwayconsandSALTmeetwithfamilyandsharediagnosis-withpackofongoingmaterials-inc ludingregistrationonEB/EB+programme.We'general'communitypaedsthentakebackcare.

2/4/20146:47AM

41 clinic meetingandwegothroughtodifferenttestsandopinions 2/4/20146:41AM

42 talkaboutthekeyfeaturesearlyoneoftenputitforwardasapossibil i tyanddirectthemtoNASwebsiteorAfasiccheckouttoseewhattheyunderstandandhaveresearchedconfirmdiagnosisandwehaveapackforfamilies

2/4/20146:30AM

43 Asabiologicalconditionduetoabnormalbrainprogramming 2/4/20146:29AM

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44 verycarefully!andasitpertainstothequestionthattheparentsoriginallycamewithwhichvariesaccordingtothec linicalsetting.eginanolderchildwithsevereVI'whyismychildnotmakingprogressatschool?'Theteamsetsouttoexplainhowthedefic itsininteraction/communication/playareimpactingonprogressinotherareas.

2/4/20146:15AM

45 DiagnosisisgivenfollowingoutcomeofSCDpanelandreportsfromallprofessionalssharedwithparentsandexplanationgivenregardingreasonsfordiagnosisandwhatthismeansforchildandfamilyandhowwecansupportchildandfamilytounderstandandmakeprogresswithlearningandallaspectsoftheirdevelopment.Accessandinformationgivenre-supportservices.

2/4/20145:52AM

46 verballyandwithawrittenreport 2/4/20143:50AM

47 thisisaverysil lyquestion.Myanswerwon'thelpyou.Iexplainitcarefully,firstascertainingtheirpriorknowledgeandeducationallevel,oftenusingdiagrams

2/4/20143:38AM

48 IexplainthatASDisaneurodevelopmentaldisorderthatwethinkhasagenetic causeandthatthefeaturesaredifficultieswithsocialcommunication,socialinteractionandimagination,alongwithrestric tedorstereotypicalbehaviours/interests.

2/4/20143:35AM

49 Thattheautistic mindisworkingdifferentlyinrelationtoprocessingtheinformationitreceivesfromtheenvironmentandinternally.Discussthespectrumofpresentationandthatthereisoftenafamilialhistoryoftheconditionwhichwil lthenhelpifaparentidentifieswiththeirchildasthiswil limpactonthemanagementathomeandoftenthemaritalrelationship.IDONOTdiscussitintermsofDISORDERbutDIFFERENCE,particularlyasIaminvolvedheavilywiththeAspergerstypepresentation

2/4/20143:21AM

50 Verbalandwritteninformation.Explainthatbehaviouralprofi leandthathelpsunderstandchild'sbehaviourandcommunicationneedsinthiscontext.Focusonindividualaswellsothatdiagnosisdoesnotexplaineverythingaboutchildandneedtotreatingchildasanindividualespeciallywhenthinkingaboutmanagement.Alsomorecomplexnowwithabout20-25%havingidentifiablegenetic conditionidentifiedonArrayCGH.Thisiswhereseparatingthebehaviourlaprofi leisuseful.

2/4/20143:16AM

51 Specific difficultieswithcommunciationandsocialskil ls,withawiderangeofpresentation.Thechildrenaremissingthe'hardware'fortheseskil ls,butwiththesupportofourservice,schooletc,andtheirownexperiencesthechildrencanlearntocompensate,andblendintooursocialandverbalworld-i.e.'softwareemulatingthelackofhardware'

2/4/20142:49AM

52 Facetoface.Havel istofusefull i terature 2/4/20142:41AM

53 multidisc iplinaryfeedback 2/4/20142:32AM

54 UsuallystartbyexploringtheirknowledgeandunderstandingofASDExplainwhichbehaviorsandfeaturesofchildhelpusarriveatdiagnosisandwhatitmeansGiveASDparentpackwithgeneralandlocalinformation

2/4/20142:29AM

55 Varies.IfIamfirsttoraise-graduallybuildupfrom-childdoesnotseemtoknowthattheyneedtocommunicate,toexplainingthatthiscouldbeaformofASDetcandeventuallyuseICD10toexplainwhatthatmeans.

2/4/20142:00AM

56 FeedbackisgvenwithchildPyschologistwhodidtheADOSandassessmentandthePaediatric ian.

2/4/20141:58AM

57 Oftengradually.Awarenessraisedatpreviousvisits.JointlywithSALTandwithwritteninfototakeaway.Mostparentsareveryreadyforafinaldiagnosis

2/4/20141:48AM

58 Talkaboutproblemswithsocialisingbeingthemaindifficulty,eachchildisdifferent.Somehaveotherproblemswithroutines,repetitiveactions.

2/4/20141:29AM

59 Dependshowmuchtheyalreadyknow.Mightinc ludetermssuchas(lackof)'socialconnection'/'instinctforunderstandingpeople'

2/4/201412:53AM

60 Explainhowwecametothediagnosis,explainwhatitmeansandthechild/YP''sstrengthsandputintouchwithLocalVoluntaryorganisationforpostdiagnosissupport.Wegothroughourmanagementplan(wehaveachecklist)andaskpermissionforreporttobec irculatedtorelevantpeople/agencies

2/4/201412:28AM

61 UsuallyatconclusionofADOS,explainingthereasonsforthec linicaldecision. 2/4/201412:11AM

62 Dependsonparentandwhattheyhavealreadyread/understand.Alwaysmentionitisl i felongconditionwithnomedical"treatment".FormoretechsavvyPCvsappleworks.

2/4/201412:00AM

63 Bigquestion-usuallyusingJonathanGreenmodelofTriadofASDandthenfollowedbydirectingtoEarlyyearswebsite

2/3/201411:03PM

64 multidisc iplinaryfeedbackmeetingmostlyledbySLT 2/3/20148:28PM

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65 StartwithrepeatingwhatIhaveheard,inc ludingparent'sorprofessionalsuspic ionsthenpointouttoChildsstrengthsthenl istagreedareasofdifficultyandintroduce/confirmconceptofASDasexplainingthese.Possiblyrelatetofamilyhistory

2/3/20144:15PM

66 Atareviewmeetingwhichtheparentsattendalongwithnurseryorschoolstaffandtherapists. 2/3/20142:28PM

67 Withreferencetothetriadofimpairment 2/3/20142:18PM

68 findoutwhattheyknowandtalkthemthroughit 2/3/20141:44PM

69 ThediagnosisisexplainedbytheMultidisc iplinaryteamAfollowupappointmentwithSpeechtherapistisalsoarrangedinformationleafletsarealsoprovided

2/3/20141:28PM

70 Aftertheassessmentandwithall iedprofessionalpresentifpartofthec linic . 2/3/20141:24PM

71 WedescribethefindingsoftheADOS,explainwhatASDmeansandputittogetherfortheparents.

2/3/20141:14PM

72 usevariousmaterialsinc ludingearlyyearsmaterials 2/3/201412:55PM

73 Diagnosisexplainedbymembersofassessmentteaminfeedbackappointmentandparentsgivenpackwithwritteninformation

2/3/201412:53PM

74 Dependsonlevelofunderstandingalready.Triadofimpairmentsdiscussed. 2/3/201412:40PM

75 Discusstriad/diadofimpairments.Thatitisaneurodevelopmentaldisorder,meaningthatbrainnotdeveloped('wired')correctly&thatexactcauseunknown.

2/3/201412:32PM

76 Face2FacewiththeICD10criteria.Thenwithwrittenandwebsiteinformation. 2/3/201412:11PM

77 DIFFICULTTOEXPLAININTHISQUESTIONNAIRE 2/3/201412:06PM

78 Verbal-referringtobehavioursobserved,writtenhandoutsfromtheCAFdirectoryorNAS 2/3/201411:54AM

79 Describetheconditionintermsoftriadimpairment,emphasisingtherangeofthespectrum 2/3/201411:46AM

80 Itdependsonseverity.ForAsperger'sIwouldsaythattheythinkorseetheworlddifferently.Forchildrenwithmoresevereautismorautismwithlearningdisabil itiesIwouldfocusmoreonexplainingwhytheybehaveastheydo.

2/3/201411:34AM

81 Thisquestionisnoteasytogiveabriefanswerto.Diagnosistobothparents,2membersofteam,howitisexplaineddependsonhistory,familyfactorsetceasytoanswer

2/3/201411:05AM

82 Notsureifyoumeanthewording?Orthesetting?Wordingisbasedonthetriad/dyadofimpairment,relatingittothechild'sperfiormanceinthec linic assessmentandparentalandotherreports.Setting:forchildrenwho'vehadanADOS/ADIassessmenttheteamgivesfeedbackattheendofthesession.Ifthechildisoldenoughandableenough,wemayarrangeforthemtogobacktoschoolorwhereversothatwecantalktotheparentsalone;iftheyarelittleitisusuallyfine.Forthe"barndoor"childrenwhodidn'tneedtheextraautismspecificassessment,childandparentscometoafeedbackc linic withme;Ifirstexploretheirconcernsandexpectationsandthendiscussthecomponentsofthemultidisc iplinaryassessmentandexplainthediagnosis.BecausethechildisthereIcanbequitespecific andIcanalsochangethestructureofthediscussion(egnotgivethediagnosisthattheteamhadpreviouslyagreedifi tdoesn'tseemright;Icaninsteadarrangeforadditionalassessmentifneeded)

2/3/201411:00AM

83 verballyandinwriting 2/3/201410:59AM

84 Iexplainitasaneurodevelopmentalproblem"wiringofthebrain"inareascontroll ingsocialinteractionandpickingupemotions.IrelateittodyspraxiaanddyslexiawhichIhaveandexplainthatIneededteachingtospell,andthoitsnotfluentIgetby

2/3/201410:37AM

85 Iaskthemwhattheythinkthediagnosismightbe,theyoftenhavethoughtofASDthemselves.IexplainthetriadofimpairmentsinamannerthatIthinktheseparticularparentsmayunderstand.Ialwaysexplainthatthereisawidespectrumofdifficultiesasmanyparentshaveaparticularpic tureofadiagnostic childintheirmind.Thisquestionisimpossibletoanswerasitdependssomuchonthespecific childandthierfamily.

2/3/201410:27AM

86 sometimeswithdifficulty;explainspectrumanddifficultiesthatcanbeencounteredonthespectrum;everyoneindividual;genetic possibil i tyandimplicationsforfuturefamilyplanninginclASDorlanguagedisorderincreasedfreq;nospecific toolsavailable

2/3/201410:16AM

87 Lookattheworldasawhole,wearealldifferent,Praiseallpositivepoints,emphasisethatdifferenceiswhatmakestheworldandlookingatwaystosupportfaringwellintheworld.Thengentlytacklespecific difficultiesprobablyoneatatimeandnotatoneconsultation.Suggestandgiverelevantl i teratureandwebsites

2/3/201410:04AM

88 UsingtheTriadofimpairmentsReferthemtoNASwebsiteforfurtherreading 2/3/201410:03AM

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89 Tailoredtosuitfamily.Thenfollowedupwithautismoutreachandwrittenlocalinfo 2/3/20149:53AM

90 Giveaninformationpacktothefamilywithlocalinformationandinformationfromthenationalautistic society

2/3/20149:43AM

91 UsuallyintermsoftheBaronCohenAQgraphwithsomeinformationonbrainstructure 2/3/20149:37AM

92 UsuallyintermsoftheBaronCohenAQgraphwithsomeinformationonbrainstructure 2/3/20149:36AM

93 verballyandusingsomewritteninfo 2/3/20149:31AM

94 Usuallybeenlookingatforawhile.tlakaboutthingschildgoodat,findseasy,whatchildfindshard.Whatparentsthinkiswrong(andcanusuallygetthemtosaysomethingabout"social"andthensayyesissocialissuesandgoontoexplainthatinmoredetail.Thatnottherefaultthatsti l l thesaechildashewasearlieretcetc(personalisedanddependentonrestofteamattime)

2/3/20149:29AM

95 Dependsonwheretheyareatintheirjourney.Mainlyaroundthechildseeingthingsdifferentlyfrommostpeople.

2/3/20149:22AM

96 Preparationbeforethediagnostic meeting.Aftermeetingwithpriordiscussiongivenresultwithfollowupapptwithin2weekstogothroughallassessments

2/3/20149:21AM

97 ThroughajointapptwithaspecialistSLT 2/3/20149:21AM

98 N/AiffullASDassessmentrequired,goestoASDTeam-oncediagnosismadetwomembersofteammeetupwithparentsandgothroughthereportanditsconclusionsandletparentstakeithomeindraftcopytolookatandrequestanyamendmentsbeforegoingoutwithparentsconsenttoagenciesinvolvedinsupportingchild&family

2/3/20149:21AM

99 Can'tpossiblyanswerproperlyinaquicksurvey,nordoihaveasingleformulaasitdependsverymuchoncomorbuditoesetcButgenerallygothroughdiagnostic criteriainbroadthemes,previouslyusingtriadofimpairmentsbutwil lnowmodifytoDSM5,withexamplesofwhyIthetheirchildmeetsthecriteria,andIalsoconcentrateonstrengthsaswellasdifficulties

2/3/20149:10AM

100 Can'tpossiblyanswerproperlyinaquicksurvey,nordoihaveasingleformulaasitdependsverymuchoncomorbuditoesetcButgenerallygothroughdiagnostic criteriainbroadthemes,previouslyusingtriadofimpairmentsbutwil lnowmodifytoDSM5,withexamplesofwhyIthetheirchildmeetsthecriteria,andIalsoconcentrateonstrengthsaswellasdifficulties

2/3/20149:10AM

101 Staringwithwhattheyhavealreadyobserved.Thenwhathasbeenraisedinschool,andthenanexplanationofassessmentcriteriaalongwiththechild'sstrengths,virtuesoftheirthinkingpatternandanyotherissuesalongside

2/3/20149:09AM

102 Dependsonseverityandlevelofcognitivefunctioning-mainlyintermsofa2dimensionaldisorderasperDSMV

2/3/20149:08AM

103 Facetofacefeedbackwithwrittenreport. 2/3/20149:05AM

104 explainwhatwehavebeenassessingfor,theresultsofthemulti-agencyassessment,confirmthediagnosis,breifexplanationofASD-spectrum,strengthsareastheirchildstruggleswithwhatsuppportisavailable-specialistnurse,education,speechtherapy-socialgroups,giveRCPCHwritteninfoleaflet

2/3/20149:03AM

105 inl inewithNICE 2/3/20149:03AM

106 Explainedbystaffinautismdiagnostic ClinicsParenttraining 2/3/20149:01AM

107 Wedescribewhatwehaveobservedandhowthatmeetswiththediagnostic criteriaWegiveinformationleaflets

2/3/20149:00AM

108 Dependsontheseverityandtheageofthechild 2/3/20148:59AM

109 gothroughthemultidisiplinaryreports-showthemevidencearoundicd-10 2/3/20148:58AM

110 Withtwoprofessionalsinfacetofaceappointmentwithoutchildpresent.Explanationofassessmentprocessthatchildhasbeenpartofwithsummaryofallthereportsthathavebeengatheredandsomeliteratureforparentstotakeaway.

2/3/20148:58AM

111 Howdoyoumean? 2/3/20148:57AM

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Q6Howdoyouexplainthediagnosistothechild/youngperson?

Answered:110 Skipped:8

# Responses Date

1 Dependsonparentswishesbutwoulddiscusswithyoungpersonusingwritteninfoasfollowup 2/10/20141:39PM

2 Askwhattheythink,explainnatureofASD,talkaboutnotneedingtobeabigproblemetcetc 2/10/20149:40AM

3 again,dependsonage,theoldertheyare,themoreinvolvedtheywil lhavebeen.Biggestproblemscropupwhenthereisadifferenceofopinionbetweenyoungpersonandparentabouttherelevance/importanceofdiagnosis!

2/10/20147:34AM

4 Usuallynotpresentatfeedbacksession 2/10/20142:32AM

5 Intermsappropriatetotheirdevelopmentalabil i ties.usuallydoesnotapeartobemuchofanissueunti lchildinmid-primaryschool.

2/10/20141:49AM

6 Olderchildrengetpsychoeducation 2/9/201411:42AM

7 Explainingthefeaturesandwhyhefeels/behavesthewayhedies 2/9/20148:10AM

8 Asabove,stressingnottheirfault. 2/8/20147:58AM

9 Notsurewhatthisquestionmeans 2/8/20144:13AM

10 Iamledbytheparentsonthis.Lookatitintermsonpersonalitydifferenceds 2/7/20142:42AM

11 Ionlyseeyoungerchildren,sodonotexplainthediagnosistothem.Wegivetheparentsadviceonhowtoexplaintothechildatalaterdate,oncetheparenthascometotermswiththediagnosis.

2/7/20142:28AM

12 Sameasabove.NASmaterial. 2/6/201411:50PM

13 Wediagnoseonlypreschoolchildren,olderthan5yearsareseenbyCAMHS. 2/6/201412:42PM

14 Dependshowoldthechildis.WitholderchildrenusuallyworkasateamwithCAMHSserviceandworkwiththemtoexplaindiagnosis.

2/6/201412:30PM

15 preschool-noneprimary:saythatsomepeoplehaveproblemswithunderstandingothersemotionsandrulessecondaryasprimarybutusethewordautismrefertoc lincalpsychologytodotheexplainign!

2/6/20147:15AM

16 Dependsontheage 2/6/20145:48AM

17 plannedflexibilyandjointlywithparents,dependingonageofchild.Formany,theparentsarehappytodothisintheirowntime.

2/5/201411:40PM

18 NotsureIamgoodatthisandmaybeleavetofamilywhichisnotideal. 2/5/20141:55PM

19 Diagnosisinexplainedtoyoungpersonusingsimplelanguage&provingwrittenleafletsfromNAS

2/5/201411:29AM

20 Everyoneofusisabitautistic &everoneisdifferent.Wecanallfindsomethingsmoredifficult.egsumsthenoftengethelpwiththatarea.Inautismtheareasareunderstandingotherpeoplesfeelings&emotions,l ikeofthingstobethesame,&oftenbeingverycorrectintheuseorunderstandingofwords.Sometimessimpleexperiencescanbeveryfrighteningegloudnoises.Thiscombinationiscalledautism-weknowlotsofthingsthatwil lhelpyouunderstand&helpthough.....

2/5/20148:53AM

21 explaintheirbrainworksdifferentlyandtheyareveryspecial,congratulatethemonthethingstheydowellstreehowcommonASDis-manyofthemalreadyknowachidlwithdiagnosis

2/5/20148:48AM

22 Dependsonageofchild.Mayusesupportingwrittenmaterial 2/5/20147:42AM

23 Ifover5-6yearsofage(developmentalage) 2/5/20146:29AM

24 explaitothemastowhytheyaredifferentfromothers.verydifficulti ftheyhavel ittleinsightintothedifficulties.somepatientsareveryawarethattheyaredifferentandhavereadorresearcheditthemselves.

2/5/20146:21AM

25 ? 2/5/20144:10AM

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26 Verbally 2/5/20143:54AM

27 CArefullyandthoughtfullydependingontheircognitivelevel.NASbookletsgivesparentusefulreferences

2/5/20141:29AM

28 Theparentsorschoolorautismoutreachteacherdothatwhenthoughtappropriate 2/5/201412:17AM

29 Rarelyhavehadtodothis,AutismPractitionermostlyinvolved. 2/4/20141:14PM

30 Talkaboutitasasetofpersonalitytraits 2/4/201412:47PM

31 Mostofmycaseloadarepreschoolersandthereforequestionn/a 2/4/201412:40PM

32 notfrequntlybutopentoanswerchildquestionsaboutwhatmakethechilddifferentthathispeergroup

2/4/201412:36PM

33 dependsontheirlevelofunderstanding;mayinvolveanotherprofessionalifpossible. 2/4/201410:29AM

34 Thisisanareawecouldimproveon.Ifanolderchild/teenagertheyareinvolvedinthefeedbackmeetingandsometimestheS<wil lmeetwiththemagaintoexploretheirunderstandinginmoredetails.Youngerchildren,probablyupunti labout10yearsaren'tnecessarilyinvolvedinthefeedbackmeetingandexplainingthediagnosistothemisn'talwaysdoneatthetimeofdiagnosis.

2/4/20149:25AM

35 Wehavequiteanumberofleafletsandbooklets.AlsodirecttosomeASDwebsites 2/4/20149:24AM

36 Irarelydo.Ifeelitisuptotheparentstodecidewhethertotellthemthenameofthewaytheyarethemselvesiftheythinkthisishelpful.Itellthechildthateveryonehasbeenmeetingtothinkofwaystohelpthemanditisimportantforthemtoaskforhelpwhentheyneedit,eveniftheyfeelsi l ly/shy.Iususallytryandtellthemhowmuchwehaveenjoyedseeingthemandhowspecialtheyarebecauseoftenthesechildrenhavepoorself-esteemastheyarenotacceptedastheyarebuteveryoneistryingtofixthem.

2/4/20149:14AM

37 agedependentandhavespecilaistASDeducationoutreachteamwhofollowuponthisaccordingtoindividualandageapproriately

2/4/20148:40AM

38 UseEarlySupportandNASresourcestofac il i tatediagnosis.Canbehomevisitorc linicfeedbacksession

2/4/20148:24AM

39 Igenerallytalkaboutthewaypeopleare"wiredup",everyoneisdifferent...somepeoplevgoodatmaths,somepeoplenotvgoodatrunning,somepeoplestruggleunderstandingsituiationsetc.Doesntmeananythingiswrongitsjusttheyneedhelpwiththeseparticularbitsthattheystrugglewithanditsimportantthatschool(etc)knowwhyandthatyouarenotdoingitonpurpose.obviouslythisverymuchdeopendsonunderstanding/age/whetherparentswantmetodiscusscchildorwhethertheyprefertowhenthetimearises

2/4/20147:55AM

40 relyonparentsmostly 2/4/20147:20AM

41 wedontaswedomailyunder5yearsoccassionalyajunior.ifwehavefelttheyneedinfowehavereferredthemtoAWMforbooklets.

2/4/20147:01AM

42 Preschoolchildren-rarelydiscussdiagnosisinfull. 2/4/20146:47AM

43 feedbackisusuallygivenwithoutthechildiftheyareprimaryschoolage.ForolderchildrenIwouldletthemhearthediscussionthentrytoanswerantspecific questionstheymayhave.

2/4/20146:41AM

44 wemakediagnosesinyoungchildren<5yearssodonotcomeacrossthisoften 2/4/20146:30AM

45 Thishasn'tarisenasIonlyseechildrenuptotheageof8;ifi tdoesIaskac linicalpsychologisttosee.

2/4/20146:29AM

46 Thiswoulddependontheage/otherneedsofthechild.Notapplicableforveryyoungchildren/olderchildrenwithsevereintellectualdifficulties.

2/4/20146:15AM

47 Wediscussthiswithparentstoseehowweshouldcommunicatewithchildandhelpthemtounderstandthediagnosis-doneaccordingtochild'sageandparentalpreferenceswithadvicefromadvisaryteacherwhoknowschild.

2/4/20145:52AM

48 Verbally-whererelevant/appropriatetodoso 2/4/20143:50AM

49 sameasaboveanddependingondevelopmentallevel 2/4/20143:38AM

50 Ihavenotdonethis.Parentshavebeenhappytodothisthemselves,orsometimestheClinicalPsychologisthasdiscusseditwiththem.

2/4/20143:35AM

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51 Thisdependsontheageoftheyoungpersonandwhetherornotatthetimetheparentswantdisc losure.Iemphasisethoughthatitisacaseoftheirmindprocessingthingsdifferently.IntrueTonyAttwoodstyleIhavestarteddescribingitintermsof"YOUARETHESORTOFPERSONETC"

2/4/20143:21AM

52 Talkaboutthingsspecific tothem.Differentperspectiveonthingsandwayofcommunicating.Mayrelatetospecific situationssothatcanunderstand.LotsofthisworkisdonebyaspecialistAutismOutreachTeam.

2/4/20143:16AM

53 Idon'troutinelydiscusswiththechildrenasIfeelit'safamilydecisiontomakethedisc losure,andthatoftencomeslaterwhentheparentshaveassimilatedthediagnosisthemselves.

2/4/20142:49AM

54 vastmajoritypreschoolersandallhaveotherdevdelaysonotreallyrelevant 2/4/20142:41AM

55 dependsonthecognitivefunctioning;ifhighfunctioning,simplistic explanation 2/4/20142:32AM

56 Alwaysreassurechildthatdiagnosisisnotaseriousi l lnessPutitintermsofothersbeingabletounderstandthewaytheyseetheworldGiveNASbookletifageappropriate

2/4/20142:29AM

57 Idiscusswithparents,andfindtheirviewsbeforetalkingwithchild.Oftenaskparentstoraiseitfirst.MostofthechildrenIseeareyoung(under6.)

2/4/20142:00AM

58 Parentsexplainthediagnosis,orrequestASDteamfromEducationtospeaktochilddirectly.Ourteamonlyassesseschildrenunder11years.

2/4/20141:58AM

59 allpreschoolchildrenwhomostlyhavel imitedlanguageskil ls 2/4/20141:48AM

60 Asabove.Witholderchildrentrytopointoutthepositivesofthediagnosis. 2/4/20141:29AM

61 NotusuallyapplicableasItendtobeseeingpreschoolchildren 2/4/201412:53AM

62 NotoftenapplicablebutfortheolderAspergerYPwewouldknowiftheyknewwhytheywerebeingassessedandthenexplainittothemofferingthemtimetoaskquestions.andpointthemindirectionofsuitablereadingmaterials,l ikeTonyAttwoodsbook-completeguide(foryoungerchildrenwewouldaskparentswhattheywouldtelltheirchildrenastheydevelopedinsightandinformthemofmaterialsthatmayhelppeopleexplaintheirdifficultiese.g.MyAutismGuideorASDWorkbookwhenappropriate)

2/4/201412:28AM

63 Olderchildrenpartic ipateinconversationwithparents.Idon'ttellyoungerchildrenbutadviseparentsaboutwhetherornottotellthechildandwhen

2/4/201412:11AM

64 Againdependsonchildandwhattheyknow 2/4/201412:00AM

65 difficultone-usuallydonebyParentsASDgroup/orCAHMsORDIRECTTHEMTONASOUTPOST

2/3/201411:03PM

66 N/AOutreachteamfromspecialistschool 2/3/20148:28PM

67 Similar:confirmstrengthsconfirm/understandareasofdifficultyexplaincommonlyseenmanyfamouspeoplesimilarstrengthsbutthinkwecanunderstandwhyhavingproblemsmayormaynotusespecific termatthisstagetochild

2/3/20144:15PM

68 Childrenareusuallytooyoung,butifnotwouldexplainthatallhavethingsthatwearegoodatandthingswefindharder,andthattheirbrainfindsitmoredifficulttounderstandsomethingsandgiveafewexamples.

2/3/20142:28PM

69 Isuggestwritingl istsforeachfamilymemberiftheirstrengthsanddifficulties.Thensaythattheirparticularpatternofthingstheyfindeasy/difficulthappenstohaveanamewhichtheymayhearotherpeoplesaycalledautism.

2/3/20142:18PM

70 dependsonageandinterest 2/3/20141:44PM

71 inormationleafletsareprovided 2/3/20141:28PM

72 Iusuallyonlyworkwithunderfives.Mostarefunctionallynon-verbal. 2/3/20141:14PM

73 getshepfromparentsandthehealthvisitors/smallbooklets,etc 2/3/201412:55PM

74 I'monlyinvolvedinassessmentofpre-schoolchildrensousuallynotapplicable 2/3/201412:53PM

75 Dependsonageandlevelofunderstanding.UsuallywithregardstofriendshipsandhelpingtounderstandWhysomething'sareharderthanotherpeoplefind.

2/3/201412:40PM

76 Generallyonlyseepreschoolers,solessofanissue.Inolderchildrendiscusshowwe'realldifferent&theparticulardifficultiestheyareexperiencing,alongwiththeirstrengths.

2/3/201412:32PM

77 Weonlydiagnosepre-schoolchildren. 2/3/201412:11PM

78 DIFFICULTTOEXPLAININTHISQUESTIONNAIRE 2/3/201412:06PM

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79 Usingbookswithpic tures-egallcatshaveAspergersSyndrome. 2/3/201411:54AM

80 Refertooutreachteamfortheirhelpredisc losureofdiagnosis 2/3/201411:46AM

81 AsabovereAsperger's. 2/3/201411:34AM

82 verballyifageappropriatetodoso,andtalkintermsofnormaldifference.Wemayadviseparentstotalkaboutnormaldifferencestoprepareachild.

2/3/201410:59AM

83 Inasimilarwayadjustingtoageofchild 2/3/201410:37AM

84 Again,dependsontheindividual.Forachildcapableofunderstandingthattheyaredifferentfromtheirpeergroup,Iwil l saythatthediagnosishasshownwhytheyhavetheirparticulardiffc iulties.

2/3/201410:27AM

85 notdonewell;oftenpreschoolageandnotfeltatleveltounderstand;olderchildrenmoreoftendiagnosedbyCAHMS;anareathatwil lneedimproving

2/3/201410:16AM

86 Congratulatehimonallthethingshehaddonewellattheconsultation.Explainthatweallfindsomethingsdifficultandneedsupport.Explainthatcarerswanthimtobetheverybesthecanbeandwearegoingtoworktogethertodothis.weallthinkdifferentlybutbecausetheworldhasrulesandregulationswehavetofindwaystol ivetogetherl ikeabigfamilyandsowesometimeshavetoactinwaytomakethiseasier.

2/3/201410:04AM

87 Ifoldenough,Iexplainthateveryonehasthingstheyaregoodatandnotsogoodat,anddescribesthechild'sownstrengthsanddifficultieswithinthisframework.

2/3/201410:03AM

88 Inthesamewaygearedtoage,backgroundetc 2/3/20149:53AM

89 Hasn'tbeenanissueformeyet-allchildrentooyoungtodiscussthiswith.I'mnotsurewhatIwoulduseinthecaseofanolderchild.ThesechildrenusedtobeseenbyCAMHShowevernowsomecometocommunitypaedssothismaybeanissueinthefuture.

2/3/20149:43AM

90 Sameway 2/3/20149:37AM

91 Sameway 2/3/20149:36AM

92 dependsonage,mayneedanindividualsessionwihtpaed,withpscholorboth.oftenparentoptstoexplainittoYPwithoutprofessionbutmayseekadviceinadvance.

2/3/20149:31AM

93 dependsonageofchild/cognitiveabil i ty.Dependsonwhatistheissueforthatchild.E.g.iftodowithgettingintroublethenfocusonthat,iftodowithfriendsnotunderstandingthemthenthatetcmaysaydiscussdiffwiththeirfriendsandthatthereisreasonwhy,thatnottheirfault,thatl ikesomepeoplehavedifficultywithsums(orwhateverthechildisgoodat!!)somepeoplehavedifficultywithmakingfriendshipsandtalkaboutconfusionwithl i terallanguageetc.vdifftoputdownexactlyaschild/YPledandtotallypersonalforthatchild

2/3/20149:29AM

94 mainlydoneinCAMHS 2/3/20149:22AM

95 Onlycurrentlyinunder5thereforenotusuallyapplicable 2/3/20149:21AM

96 NotappropriateinpopulationIsee 2/3/20149:21AM

97 Donebyteamwithparent'sinput 2/3/20149:21AM

98 Idon'talways!Dependsonageandabil i ty,butdoverymuchsameasparentswhenidobutatmanappropriatelevel

2/3/20149:10AM

99 Idon'talways!Dependsonageandabil i ty,butdoverymuchsameasparentswhenidobutatmanappropriatelevel

2/3/20149:10AM

100 DependingontheirageImightstartofwiththeirperceptionoftheirdifficulties.Thengoontodiscussthequirkinessof'neurotypical'thinkingandhowtheirperceptionthinkingfitsintowidercontext.Alsodiscussionofwhattheydobetterthanothersandhowwecanhelpthemwithunderstandingus!Etc

2/3/20149:09AM

101 AsaboveIsaythatitexplainstoothershowtheyseetheworldandhowtheythinksothatotherscanunderstandthembetter

2/3/20149:08AM

102 Ionlyassesspreschoolchildren,childnotpresentatfeedbackappointment. 2/3/20149:05AM

103 ifchildisawareandinterestedinthediscussion-explainnothingwrongbuttheirbrainwireddifferentlysotheystrugglewithegmakingfriends,knowingwhattosay,havingroutinesetc

2/3/20149:03AM

104 dpenedingonageofthechildanddiscussionwithfamily 2/3/20149:03AM

105 Explainedbyspecialiststaff 2/3/20149:01AM

106 Notusuallyatc linics,mostareunder8 2/3/20149:00AM

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107 dependsontheirageanddevelopmentallevel. 2/3/20148:59AM

108 wedoearlyyears-oftenexplainedasbrainworkingdifferently 2/3/20148:58AM

109 Dependsonchild. 2/3/20148:58AM

110 Howdoyoumean? 2/3/20148:57AM

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Q7Whatbooksdoyourecommendtotheparentsofachildnewlydiagnosedwith

ASD?Answered:103 Skipped:15

# Responses Date

1 Readingl istinc ludedinparentalinfopack 2/10/20141:39PM

2 Suggesttheylookatwww.jkp.com;TonyAttwoodandLornaWing,NASandlocalsupportgroups

2/10/20149:40AM

3 Nonemyself,oureducationcolleagueshaveusuallycoveredthismorethanadequately!Oneofourchildrenscentresalsooffersamarvellouscourseforparentsofnewlydiagnosedchildren.

2/10/20147:34AM

4 nobooksbutsignposttoNASwebsite,Autismwestmidlands,andourautismparentsgroupatourCDCplusearlybirdorcygnet

2/10/20142:32AM

5 Aspergersyndrome-TonyAttwoodFreaks,GeeksandAspergerSyndrome 2/9/201411:42AM

6 TonyAttwoodsbooks 2/9/20148:10AM

7 Dependsonthefamily.Isignposttowww.autism.org.uk,alsodaslne.organdresearchautism.org.uk

2/8/20147:58AM

8 Autism.orgwebsite 2/8/20144:13AM

9 Asperger's-Tonyatwood.NASinformationleaflets,LocalaSDsupportgroupinformationThereasonIjump

2/7/20142:42AM

10 AnybooksontheNationalAutistic SocietyWebsite."Itcangetbetter"byPaulDickinsonandLizHannah,"AllCatsHaveAsperger'sSyndrome"byKathyHoopman,"LisaandtheLacemaker"byKathyHoopman,"ABlueBottleMystery"byKathyHoopman.

2/7/20142:28AM

11 NASmaterial.Incredible5pointscaletomanageemotions. 2/6/201411:50PM

12 Irecommendnaswebsite 2/6/201412:42PM

13 none 2/6/20147:15AM

14 GenerallydirectthemtoNASwebsiteforrl iableinformationandl inkstoothergoodresources.AlsorecommendTonyAttwood

2/6/20145:48AM

15 don't-Isuggestl inkstolocalservicesandreputablewebsitessotheycanchooseitemsthatsuitthem

2/5/201411:40PM

16 socialstories 2/5/20141:55PM

17 Autism/Aspergers--recommendedbyNASinc l.TonyAttwood 2/5/201411:29AM

18 201toptipsforparentingachildwithAsperhgerssyndromeBBoyde 2/5/20148:53AM

19 Igivethemal istandrecommendTonyAttwoodorChrisGil lbergforparentsofAspergerskids;CarolGrayforsocialstoriesalsogivethemwebsitese.g.NASandScottishAutism

2/5/20148:48AM

20 Dependsonage/learningabil i ty.Suggestedbooksininfopack 2/5/20147:42AM

21 www.nas.org.uklocalautismsupportgroupsl istofotherusefulresources 2/5/20146:29AM

22 signpostthemtothewebsitenas.orguk.andsomepublishers. 2/5/20146:21AM

23 ifhighfunctioningattwood 2/5/20144:10AM

24 NASbookletInformationfromlocalparentsupportgroupsInformationaboutlocalcourses 2/5/20143:54AM

25 Locall i teratureNASbooklets 2/5/20141:29AM

26 resourcesareavaliablefromtheinformationteam,CHIP+,andthePinesautismcentrewithspecialistadvicefromboth

2/5/201412:17AM

27 ReferthemtoCHIP+orNASwhohaveextensivel ibraries. 2/4/20141:14PM

28 Wehaveal istthatweinc ludeininfopack-inc ludesWing,Attwood,variousothers 2/4/201412:47PM

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29 ReferthemtoNASwebsite.Infopackwithresourcesisgivenatdiagnosisinc ludingreferencetocharitycerebrawhichhasabooklendingservice.

2/4/201412:40PM

30 wehaveal istofbooks 2/4/201412:36PM

31 directthemtoNASwebsite;TonyAttwood'sbookforAsperger; 2/4/201410:29AM

32 WehaveanASDinformationpackthatinc ludesal ibraryl istforCHIP+whichisourlocalinformationserviceintheHighlandsofScotland.

2/4/20149:25AM

33 Idon't.IsuggesttheycontactthelocalgroupsandbranchoftheNAS.Motivatedparentswil lhaveresearchedeverythinganywayandthosewhoarenotareunlikelytobeinspiredbyreading-theyarebetterwithactualcontactwithpeoplewhocanhelpthem/adviseonstrategies.Isaythatthebestthingtodoistoworktogetherwiththescoolsothatthereareconsistentstrategiesacrossallsettings.

2/4/20149:14AM

34 can'tgiveyoudetailssorry-haveanumber 2/4/20148:40AM

35 NAS/EarlySupport 2/4/20148:24AM

36 1.TheAutistic Spectrum:aguideforparentsandprofessionals.LornaWingISBN1-84119-674-62.10thingsthateverychildwithautismwishesyouknew.ElleKnotbohnISBN97819325653003.TheCompleteGuidetoAsperger’sSyndrome:TonyAttwoodJessicaKingsleyPublishersISBN1-85302-577-14.CanItellyouaboutAspergerSyndrome?AguideforfamilyandfriendsJudeWeltonJessicaKingsleyPublishersISBN1-84310-206-4

2/4/20147:55AM

37 louderthanwords,thewayiseeit:apersonallookatautismandaspergers 2/4/20147:20AM

38 ourinfromationpackotherwiseIsuggesttheycontactourAutuismcoordinatororAWMfortheirsuggestions

2/4/20147:01AM

39 IrecommendtheNASwebsite 2/4/20146:47AM

40 wesuggestNASandautismangliwebsites.Wealsohaveseverallocalgroulsandwegiveoutinformationshhets.

2/4/20146:41AM

41 NASreading 2/4/20146:30AM

42 EarlySupportInformationforParentsaboutASDMotivatetoCommunicate-Griffin&SandlerAnythingbyTonyAttwoodforHFA/Aspergers

2/4/20146:29AM

43 usuallysuggesttheylookattheNACwebsite 2/4/20146:15AM

44 WesignpostNASwebsight,EarlyBurdcourse,cygnetcoursewhicharespecificallttargetedtoparentsofchildrengivediagnosisofASDandlocalNationalAutistic Societybranchparentsupportgroup.

2/4/20145:52AM

45 WehaveapackofinformationproducedRegionallythereforedonotrecommendspecificbooksattimeofdiagnosishoweverinmypaediatric followupwil lreferparentstosomethatmayberelevant

2/4/20143:50AM

46 IdirectthemtotheNASwebsiteandtellthemarangeofbookstochosoefromthere.Theydothismuchbetterthanwecan

2/4/20143:38AM

47 Ihavenotrecommendedanyinparticular,butIgivethemtheNASleaflet,andsuggestthattheylookatwhatisavailable.

2/4/20143:35AM

48 GirlsgrowingupontheautismspectrumbyShanaNicholsCanItellyouaboutAspergerSyndromeLeafletsfromtheNASandthelocalandnationalwebsites

2/4/20143:21AM

49 Nospecific books.SuggestNASwebsiteandprintoffsomeinformationforcarers. 2/4/20143:16AM

50 Noreadingl istsotospeak,butourlocalASDcharityhavealongl ist,andalendingl ibrary,andfamiliesareautomaticallyreferredtothecharityatthetimeofdiagnosis.

2/4/20142:49AM

51 Wehaveal ist(notinfrontofmeatthemoment) 2/4/20142:41AM

52 LornaWingWhatisautism? 2/4/20142:29AM

53 ChoosefromNASwebsite 2/4/20142:00AM

54 sometimesfreaks,geeksandasperger'ssyndrome 2/4/20141:48AM

55 EarlySupportbookletonASD(givel inktoDfEarchive)thengiveourlocalhandoutwithrecommendationsandwebsites,+sometimesselectionsfromDorlingKindersleycataloguedependingonc ircs

2/4/201412:53AM

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56 Variousandtailoredtowardsneeds.theolderAStypechild/YPwewouldsuggestTonyAttwood'sbook,aguuideforparentsnadprofessionals,theyoungerchildren,usedtoreccomendautismthefactsWewouldsuggesttheydiscussitwiththelocalautismsociety(theyhavealibrary)andpointtheminthedirectionofJessicaKingsleypublishers.Alsotentoptips(fromLeicester-adults)andgeneralinfromsationfromlocalautismsocietyreautismoffromNAS.AlsoEarlybirdwefeelismoreinvaluablethannecessarilyreadingmaterial

2/4/201412:28AM

57 signposttoNAS 2/4/201412:11AM

58 Thoseprovidedthroughnasandlocalasdgroups;can'teatwon'teatBrendaleggeforthosewitheatingissues;controll ingtheanger:theredbeastforangerprobs

2/4/201412:00AM

59 Freaks,geeksandAsperegersTheCompleteGuidetoAsp-AtwoodAllCatshaveAspergersAutismAveryshortintroducation-Frith

2/3/201411:18PM

60 aSABOVE 2/3/201411:03PM

61 "WhydidIjump""Curiousincidentofadogatmidnight" 2/3/20148:28PM

62 Incredibleinc identofdoginthenight-time;WestMidlandsautistic societyleaflet;WestMidlandsASTinformationpack

2/3/20144:15PM

63 NASreadingl ist,EarlySupportASDmaterials. 2/3/20142:28PM

64 signforyoungpeople-nasetc 2/3/20141:44PM

65 GoodbeginingsbookletToreadinformationavailableonNationalautistic societywebsite 2/3/20141:28PM

66 HigherfunctioningchildrenIrecommendtheTonyAtwoodAspergersbook,teachingchildrenwithautismtomindreadhowlin,baronCohen&Hadwin,

2/3/20141:24PM

67 None 2/3/20141:14PM

68 Apracticalguidetoautism; 2/3/201412:55PM

69 Readingl istsuppliedinfeedbackpack.MainlyhighlighttoparentsinformationonNASwebsite 2/3/201412:53PM

70 NASwebsiteLocalcourses 2/3/201412:40PM

71 Sometimes'TheCuriousInc identoftheDogintheNight.'Whentheywanttoknowaboutexplainingdiagnosistosiblings,orfordiscussingdiagnosiswithchildwhenolder,booksbyNASeg.'Mybrother/sisterisspecial 'AlwaysprovidewebsiteaddressesofNAS,Cerebra,&ContactaFamily

2/3/201412:32PM

72 Idon't 2/3/201412:11PM

73 REFERTONASWEBSITE 2/3/201412:06PM

74 Thereisarecommendedlist(byNAS)wegiveasahand-out. 2/3/201411:54AM

75 Welshgovtguide 2/3/201411:46AM

76 TonyAttwood.'Itcangetbetter'.LukeJackson,althoughthetitle'Freaks,GeeksandAsperger'sSyndromeisabitoffputting.

2/3/201411:34AM

77 opportunisticallybutmostlythisdoesn'tfalltome-mycaseloadareusuallytooyoung. 2/3/201411:00AM

78 listfromAutistic soceity,whichIgivetoparents 2/3/201410:37AM

79 Wehaveafactsheetwitharangeofbooksreccomended.Italsohasthedetailsoflocalandnationalsupportgroupswhoareoftenmoreuptodateaboutbooksthatfamiliesmayfindhelpful.

2/3/201410:27AM

80 ifAspergers,thenTonyAttwoods;ifASDthenNASwebsiteandHASlocall ibraryandparentsupportofficer/supportgroupandinfoevenings

2/3/201410:16AM

81 ASDbookbyeducationLonaWing'sbookTonyAtwood'sbookNASwebsite 2/3/201410:04AM

82 Noparticularbooks.NASwebsite 2/3/201410:03AM

83 Theseareallprovidedbyautismoutreach 2/3/20149:53AM

84 Idon'tbuttheremaybesomeinformationinthepack 2/3/20149:43AM

85 ForhigherfunctioninganythingbyTonyAttwood 2/3/20149:37AM

86 ForhigherfunctioninganythingbyTonyAttwood 2/3/20149:36AM

87 nilspecfic ,dependsonage,langage,c ircumstancesetc-varieschildtochild 2/3/20149:31AM

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88 nonespecific .giveinfoaboutlocalNASgroupandadvicethatNASwebsitehasbookstheymaywishtolookat.referontoearlybird/earlybirdplusorequivalent

2/3/20149:29AM

89 IfhighfunctioningthentheTonyAttwoodbooks.OtherwisetheNASwebsiteandourlocalparentsupportgroup.Theyareofferedapostdiagnostic Cygnetgroup.

2/3/20149:22AM

90 Anythingonnaswebsite 2/3/20149:21AM

91 SuggestcheckNASwebsiteasfeelimpossibletokeepuptodateOurreadingl istsuggestsAutismthefactsTheautismspectrum-aparentsguideNASAutism-howtohelpyourchildLeicesterCCItcangetbetter-----PaulDickensonCanteat,wonteatBrendaLeggeRecognisingandcopingwithstressNASFocusonthefamilyNAS

2/3/20149:21AM

92 CollegeofPsychiatryinformationsheetspluslocalgroupinfo 2/3/20149:21AM

93 Dependsonc ircumastances 2/3/20149:10AM

94 Dependsonc ircumastances 2/3/20149:10AM

95 MainlyNASwebsiteandlocalservices 2/3/20149:09AM

96 NationalAutistic Societywebsite 2/3/20149:08AM

97 Readingl istgiven,alsorecommendcontactNationalAutistic Society. 2/3/20149:05AM

98 ifolderchild:FreaksGeeksandAspergers-sometimes-dependsontheparents 2/3/20149:03AM

99 recommendtogoonNASwebsiteforfurtherinformation 2/3/20149:03AM

100 Recommendedbyspecialiststaff 2/3/20149:01AM

101 Wegivearesoucel istwithNASasbestsiurceofinformation 2/3/20149:00AM

102 asabovebutIsuggestourlocalEarlyBirdcourse. 2/3/20148:59AM

103 wesuggestNASwebsite 2/3/20148:58AM

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Q8WhatbooksdoyourecommendtoachildnewlydiagnosedwithASD?

Answered:88 Skipped:30

# Responses Date

1 Don'tmakespecific recommendations 2/10/20141:39PM

2 Showthempagesinjkp.comcatalogue 2/10/20149:40AM

3 seeabove 2/10/20147:34AM

4 none 2/10/20142:32AM

5 AllcatshaveaspergersyndromeIamspecial 2/9/201411:42AM

6 TogoonJessicaKingsleywebsiteandlookforsuitablematerialaccordingtoageandabil i ty 2/9/20148:10AM

7 Dependsonthesituation 2/8/20147:58AM

8 Notmanyteenagers,sodon't,usually 2/8/20144:13AM

9 Seeabove:"AllCats...""LisaandtheLacemaker""Abluebottlemystery" 2/7/20142:28AM

10 Irecommendnaswebsiteandthel istofbooksthattheyprovide. 2/6/201412:42PM

11 none 2/6/20147:15AM

12 Don'tknowanygoodonesforyoungerchildrenbutwouldbeverykeentohearofsome.Geeks,FreaksandAspergersforteenagers.

2/6/20145:48AM

13 asabove 2/5/201411:40PM

14 Idon'tthinkIhave 2/5/20141:55PM

15 AsrecommendedbyNAS 2/5/201411:29AM

16 Dependsonage-ViaJessicapublishingFreaks,,Geeks&automobiles 2/5/20148:53AM

17 onthel istIgiveparents 2/5/20148:48AM

18 Dependsonage/learningabil i ty 2/5/20147:42AM

19 freeks,geeksandaspergerssyndrome 2/5/20146:21AM

20 ifrightagefreaks/geeksetc 2/5/20144:10AM

21 Notawareofanybooks 2/5/20143:54AM

22 Asabvoe 2/5/20141:29AM

23 asabove 2/5/201412:17AM

24 AsforParents 2/4/20141:14PM

25 asabove 2/4/201412:47PM

26 N/a 2/4/201412:40PM

27 listavailablefromASCSS 2/4/201412:36PM

28 Nothingspecific ,NASwebsite.(DVDfromGOSwasusefulbutIdon'thaveitanymore) 2/4/201410:29AM

29 Ineverhave. 2/4/20149:14AM

30 asabove 2/4/20148:40AM

31 asabovebutpartic forchildren-thebluebottlemysteries,thecuriosinc identofthedoginthenightIhavejuststartedreading"thereasonijump"-mayinc ludethat

2/4/20147:55AM

32 forableASDandolderkids,Irecommend1.thecuriousinc identofthedoginthenighttime,thereasonIjump

2/4/20147:20AM

33 dontreallydealwitholderchildrenbutaboveifdid. 2/4/20147:01AM

34 IwouldsuggestlookingatNASforreadingmaterialortalktotheSupportgroupcontactthere 2/4/20146:30AM

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35 ThishasntcomeupbuttheNAShaveprodcuedabookforchildrenthatthepsychologistonourteamuse

2/4/20146:29AM

36 dependsontheneedsofthechild 2/4/20146:15AM

37 Thisdependsverymuchonchild'slevelofabil i ty 2/4/20143:50AM

38 asno7 2/4/20143:38AM

39 Asabove. 2/4/20143:35AM

40 GenerallyitisacaseofdiredtingtothelocalwebsiteAutismWestMidlandsortheNASwebsite 2/4/20143:21AM

41 Nospecific books.SuggestlookingatNASwebsite. 2/4/20143:16AM

42 Noreadingl istsotospeak,butourlocalASDcharityhavealongl ist,andalendingl ibrary,andfamiliesareautomaticallyreferredtothecharityatthetimeofdiagnosis.

2/4/20142:49AM

43 Haven'tever 2/4/20142:41AM

44 olderchildren-LukeJackson'sbookFreaksGeeksandAspergerSyndromeYoungerchildren-IamutterlyUniquebyElaineMarieLarson(last2Irecommended)

2/4/20142:29AM

45 ChoosefromNASwebsite 2/4/20142:00AM

46 Ihaverecommended"Freaks,geeksandaspergers" 2/4/20141:29AM

47 a/a 2/4/201412:53AM

48 Againtailoredtothereage,abil i tylevelandinterestssosomeofthebookswrittenbypeopleonthespectrum,MyAutismGuideforyoungerchildren,comleteguidefromTonyAttwood

2/4/201412:28AM

49 signposttoNAS 2/4/201412:11AM

50 Asabove 2/4/201412:00AM

51 Freaks,geeksandaspAllcatshaveaspergersThinkinginpic tures-GrandinPretendingtobenormal-holl iday

2/3/201411:18PM

52 ASABOVE 2/3/201411:03PM

53 N/AIworkmainlywithchildrenunder5 2/3/20148:28PM

54 None,unlessaskedatthisstage,though,givewarningaboutusefulanddangerouswebsites(especiallytoparents)

2/3/20144:15PM

55 suggestparentsexplorenaswebsite 2/3/20141:44PM

56 ToreadinformationavailableonNationalautistic societywebsite 2/3/20141:28PM

57 FreaksgeeksandaspergersbyLuleJackson,theaspergersbookbyAtwoodiftheyareolderteens

2/3/20141:24PM

58 notapplicble 2/3/20141:14PM

59 variousbooksdependontheage 2/3/201412:55PM

60 N/A 2/3/201412:53PM

61 NASwebsite 2/3/201412:40PM

62 Asabove 2/3/201412:11PM

63 NOTDONEANY 2/3/201412:06PM

64 Writtenrecommendedlistavailableasahandout. 2/3/201411:54AM

65 LukeJackson,ifIthinktheycancopewiththetitle. 2/3/201411:34AM

66 notforthechildrenbutfortheirparents,aselectioninc luding:Autism:howtohelpyouryoungchildbyLeicestershireCountyCouncilandFosseHealthTrust(availablethroughtheNationalAutistic Society).Theautistic spectrum:aguideforparentsandprofessionalsbyLornaWing.Forschool:averygoodresourcebookcalledDevelopingBaselineCommunicationSkil lsbyDelamainandSpringItcontainssomeusefulgroupactivitiesforhelpingtodevelopchildren’scommunicationskil ls.Booksondevelopingveryearlycommunicationskil ls:Playing,LaughingandLearningwithChildrenontheAutismSpectrumbyJuliaMoorReachingtheYoungAutisticChild:ReclaimingNon-autistic PotentialThroughCommunicativeStrategiesandGamesbySibylleJanertAndCarolGray'sbooksonsocialstoriesandcomicstripconversations

2/3/201411:00AM

67 SomeexcellentbooksfromJessicaKingsley 2/3/201410:59AM

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68 referraltoourEarlyBird/EBplusandcygnetcoursestoAimingHighandl iaisewithschool 2/3/201410:37AM

69 Thesameasforparents,iethereisafactsheetwithsomebooks,butalsoinformationtowebsitesthatmightbemorehelpful.

2/3/201410:27AM

70 havenot 2/3/201410:16AM

71 Variableanddependsonage.Usuallyletparentsleadonthisone. 2/3/201410:04AM

72 Noparticularbook.Wouldl ikesuggestionsandrecommendationsaboutthisthough. 2/3/201410:03AM

73 Ditto 2/3/20149:53AM

74 Seeabove 2/3/20149:43AM

75 DirectparentstoNAS 2/3/20149:37AM

76 DirectparentstoNAS 2/3/20149:36AM

77 asabvoe 2/3/20149:31AM

78 nilspecific 2/3/20149:29AM

79 Ihaven't. 2/3/20149:22AM

80 N/aforagegroup 2/3/20149:21AM

81 IwasunabletofindthisoutbuteachmemberoftheAutismTeamhasafewthattheyrecommend

2/3/20149:21AM

82 Idon'tatthemoment. 2/3/20149:09AM

83 Dependsonage 2/3/20149:08AM

84 N/Aonlyassesspreschoolchildren 2/3/20149:05AM

85 sometimesAllCatshaveAspergers 2/3/20149:03AM

86 recommendtogoonNASwebsiteforfurtherinformation 2/3/20149:03AM

87 Recommendedbyspecialiststaff 2/3/20149:01AM

88 asabove. 2/3/20148:59AM

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92.37% 109

7.63% 9

Q9Doyouprovidepostdiagnosticfollowup?

Answered:118 Skipped:0

Total 118

# Comments Date

1 Withspecialistnurseafter1monthviaphoneandmeetingifrequested 2/10/20141:39PM

2 Forpreschoolersalways,dependsforolderchildren.Alwayssaywouldbehappytodiscussissuesifdon'tseeroutinely

2/10/20149:40AM

3 wecontinuetoseetoaddressanyproblemswhichmightcropup;frequencyvariesandtendstodiminishwhenestablishedifnogreatunaddressedproblems

2/10/20147:34AM

4 Regularlyforthoseunder5andannualyifparents/childfindithelpfuloverthisage.Itisimportanttoreflectonthefactthatthereisveryl i ttlecontinuityofcareforthesechildrenandfamilies(eventeacherschangeannuallyandparentsoftenreporthugechangesinapproacheverySeptember)

2/10/20141:49AM

5 onlyifmedicallyindicated.Outreachteamprovidesgeneralsupport. 2/9/201411:42AM

6 Agreeappropriatefollowuponcase-by-casebasis 2/8/20144:13AM

7 Butonlyasaparentsinformationgroupworkshop. 2/7/20142:28AM

8 onlyifassociatedsleepproblemsrequringmedcationorADHDmedicated 2/6/20147:15AM

9 generallyoneshortappointmenttoensuretheyhavebeensignpostedtoallrelevantsupportagenciesandansweranyquestionsfamilymayhave

2/6/20145:48AM

10 offertomeetinafewweeks-mostdon'twantthis-thenonanopenappointmentforthosethatdont'needregularc linic appointmentsformedicalreasons,andofferreviewappointmentsatkeytransitiontimes.ParentsorotherscancontactmeatanytimeinbetweenandIcansortthingswiththemonthetelephoneormeetupetcasappropriate.

2/5/201411:40PM

11 mostfamiliesIseeonce6-9monthsafterdiagnosisunlessacolleagueisalsoseeignthem 2/5/20148:48AM

12 oneoffiftherearenocoomorbidities 2/5/20146:21AM

13 familysupportplanning3monthsafterdiagnosis 2/5/20144:10AM

14 variesonparent'spreferencesandiftherearespecific medicalproblems 2/5/201412:17AM

15 Asabove.Followupisin6weeks,usuallybytheASDcoordinatorwhoisac linicalteammember.

2/4/201412:40PM

Yes

No

0% 20% 40% 60% 80% 100%

AnswerChoices Responses

Yes

No

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16 MDMandc linic appointmentfordiscussionofcomorbiditiesandinvestigations 2/4/201412:36PM

17 Someonemeetswiththefamily3monthsafterthediagnosisisconfirmed. 2/4/20149:25AM

18 Iseethemagaininayear,leavingtheearlyf/utotheschool,Autismadvisoryteacherandifpre-school,SNHV.Myrole,asItellthemistoensurethattheirneedsarebeingmetonceeverythingisapparentlyinplaceandadvocateontheirbehalfifnot.Thereisl i ttletherapeutictooffersomyroleisadvocacyandtopickuponanyunmethealthneeds.

2/4/20149:14AM

19 seeinjointMDMwithschool/nurseryandthenti l inschoolandthenasneededparentcourseshereonASD;parentadvisoronASCetcetc

2/4/20148:40AM

20 fromamedicalperspective,childrenandyoungpeoplearefollowedupunti laholisiticpackageisinplace

2/4/20148:24AM

21 wehaveanASDspecialistnusre 2/4/20147:55AM

22 shortterminsufficeinttoseethemlongtermunlessmedicalproblemsieepilepsy 2/4/20147:01AM

23 GeneralCommunityPaedssupportchildunti lsettledintostableschoolplacement-usuallyaged5or6years.IamnotsurethisisthebestuseofaPaediatric ian'stime-mightbebetterifwehada'keyworker'whocouldfollowupl ikethis.

2/4/20146:47AM

24 at6monthsand1year 2/4/20146:41AM

25 thisisl imited.Wearenotcommissionedforthisanditcanseemthatthisisinadequate 2/4/20146:30AM

26 usuallyaoneoffpaediatric appointment6-12monthspostdiagnosis;wil l alosseeachildagainifrequestedandappropriate

2/4/20146:29AM

27 generallyoffertelephonefollowupifthediagnosisisnewandunexpected.Actualfollowupappointmentdependsonwhattheoriginalreferralquestionwas

2/4/20146:15AM

28 ThisalsodependshowevereveryfamilyreceivingadiagnosisthroughtheM-Dteamwil lhavetheofferofapostdiagnosisfollowupvisitandalsoaninvitationtolevel1parentawarenesstraining.Level2trainingisavailablethereafter.Paediatric ianswil lfollowupthosechildrenwherethereisamedicalneedsotodo

2/4/20143:50AM

29 Icontinuetoseethemregularly,buttheyarealsoofferedaplaceonaparentscourse"understandingASD"

2/4/20143:35AM

30 Initiallybuttimeconstraintsaremakingthisdifficult,althoughourbiggestdifficultyisgettingCAMHStogetinvolvedwiththehighlyanxiouschildrenandteenagerswithoutastheyseeitasignificantmentalhealthproblem

2/4/20143:21AM

31 Oftencomorbiddisordersthatneedinvestigationortreatmentandpracticalissuessuchascontinence,sleepdistrubance,beahviourthatneedsaddressing.

2/4/20143:16AM

32 Anafterdiagnosiworkshop(halfaday)ledbythepsychologyteam,whichcanleadontoEarlybirdforthe<=5yrolds,ortheHelp!course,whichisrunbythelocalautismcharity.Paediatric ianfollow-updependsontheneed,i.e.medicalneed,orco-ordinationofinterventionservices.

2/4/20142:49AM

33 Onlyiftheyhaveothermedicalproblems(e.g.sleep,epilepsy)orthereareparticularreasonstheparentswanttobeseenagain(e.g.supportfornegotiatingtransitiontoschool)

2/4/20142:41AM

34 Followupc linic withpaediatric ianandlocalfamilysupportworkers 2/4/20142:29AM

35 onceonlyformostchildren 2/4/20142:00AM

36 visitfromSALTwithin4-6weeksc linic review2-3monthswithme 2/4/20141:48AM

37 Willusuallyseeatleastoncetofeedbackcommentsfromour'TeamAroundSocialCommunication',checkparentalunderstanding,chaseoutstandingreferrals/reports/investigations

2/4/201412:53AM

38 Wesometimesdoonanadhocbasise.g.psychologistmayaskherassistanttoworkonbehaviourmanagementbutwearenotfundedforthis.Wereferontoappropriateagencieswithourrecommendations(checklist)andtothelocalautismsocietyforpostdiagnosissupport

2/4/201412:28AM

39 sometimes-incasesofextremefoodfad-dietetic involvementorsleepdifficultiesasnotallGPswil lprescribeMelatonin

2/3/201411:03PM

40 onlyifthereisamedicalproblem 2/3/20148:28PM

41 Ialwaysfollowupunti ltransitiontoadulthoodthoughthismaybetelephone/2to3yearlybutusuallyarrangeanappointmentinitial lywithin1to4weeks,dependingonneed

2/3/20144:15PM

42 Usuallyonly1follow-upandthendischargetotheeducationsystem 2/3/20142:28PM

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43 Singleappointmentinpaediatricsat6weeksafterdiagnosis,thendischargedunlessotherproblemsarebeingtreated

2/3/20142:18PM

44 preschool-at3.3yearsand6-9mthsifatschoolrefertoeducationprogram 2/3/20141:44PM

45 Usuallytelephonefollowupwithin2weeksandthenpaediatric reviewinfollowupbymyselforwithlocalmembersfromthenationalautistic societyrepresentatives.

2/3/20141:24PM

46 Dependsonhowwellsupportedthefamilywerepriortodiagnosis 2/3/20141:14PM

47 mosthavesecondarydisabil ity,needfollowups 2/3/201412:55PM

48 Usuallyofferoneappointment,butgenerallyseveralmonthslater.Familygivenmycontactnumbertocontactmeifanyquestionsintheinterim.Clinicalpsychologistinteamsettingupapostdiagnosisc linic (foralldisabil i tiesnotjustASD),towhichparentswil lbeinvitedtoattend&thisl ikelytobewithin2weeksofdiagnosis.

2/3/201412:32PM

49 1.AllParentsarereferredtoapostdiagnostic workshop.Iftheyattendthistheycanalsobooktoattendtheearly-birdprogramme.2.Clinic ianusuallyoffersatelephonereviewin6months.Parentscanasktobringitforwardormakeitadirectfacetofacevisitsooneriftheywish.

2/3/201411:54AM

50 mostlywithaspecialisthealthvisitor 2/3/201411:00AM

51 onlywhereIfeelneededbutoffertoseeagainiffamilygetincontact 2/3/201410:37AM

52 ifongoinghealthconditions;ifsti l l preschoolandneedingeducationalsupportadvice;otherwisepostdiagnosissupportunderresourced

2/3/201410:16AM

53 Thereistoomuchinformationtogive.Oftenmotherisemotionalandrelievedandhencethisisdealtwithsensitively.

2/3/201410:04AM

54 Oftenbutnotalways 2/3/201410:03AM

55 Frequentlyifthereareissuessuchassleep,diet,ADHDandotherco-morbidities.Allseenatleastonceayear.

2/3/20149:53AM

56 PreschoolChildAssessmentservicehaveonefollowup-usuallyat6monthsSchoolageservicenocapacityforroutinefollowupbutofferopenappointmentforparentstocontactinfutureAllparentsofferedaplaceonatermlyparentASDtrainingmorning

2/3/20149:37AM

57 PreschoolChildAssessmentservicehaveonefollowup-usuallyat6monthsSchoolageservicenocapacityforroutinefollowupbutofferopenappointmentforparentstocontactinfutureAllparentsofferedaplaceonatermlyparentASDtrainingmorning

2/3/20149:36AM

58 ifindicated 2/3/20149:31AM

59 seeinOPConceafterdiagnosis(unlessmedicalissuesthencontinuetoseeforthosee.g.seizures,constipation,sleepetc)

2/3/20149:29AM

60 Certainlyapostdiagnostic appointmenttogooverthings.Howlongtheyarefollowedupfordependsonanyogoingmedicalneeds.Manyarereluctanttobedischarged.

2/3/20149:22AM

61 Limitedaspossible 2/3/20149:21AM

62 Parentsgivencontactdetailstorequestapptorcontactadvicel ine 2/3/20149:21AM

63 OnceachildisdiagnosedtheyarefollowedupbythecommunityPaediatric teamunlessrequiresspecialistinput.

2/3/20149:21AM

64 Generallyjustoneifparentswishit.ButIgivethetelephonememberofthelocalautismservicesfamilysupportworker.

2/3/20149:09AM

65 Generalchilddevelopmentcentrefollowupunti lschoolentry. 2/3/20149:05AM

66 Providedbyspecialiststaffautismdiagnostic interventionteam 2/3/20149:01AM

67 CantdothisasaroutineduetolackofresourceWeofferearlybird 2/3/20149:00AM

68 Notconsistentthoughwhichwearetryingtoimprove 2/3/20148:58AM

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Q10Whatwouldyoumostwishtoimproveintermsofservicesforchildrenpresenting

withfeaturesofASD?Answered:110 Skipped:8

# Responses Date

1 Coordinatedsupportforpostdiagnostic issuesandongoingbehaviouralsupports 2/10/20141:39PM

2 supportshouldNOTdependonadiagnosisbutshouldbeprovidedonbasisofneeds-andmostlyinschoolnothealthcaresetting

2/10/20149:40AM

3 Hmmm.I'mfarfromcertainthatthepoliticalspotl ightisreallyveryhelpfulforthesechildren.Moreservicesdoesnotnecessarilyequatetoa"better"outcome,andI'mafraidthatsomeoftheagendasthataregettingattachedtothisissuearenotnecessailyinchildrensbestinterests....

2/10/20147:34AM

4 multidisc iplinaryappraoach,noSALTorpsychologyinputintoourpatietsatall! 2/10/20142:32AM

5 Acknowledgementofl imitationsof'diagnostic 'tools.Moreattentiononenvironmentaladaptationstomeetchild'sneedsandlessempahasisonmoodalteringdrugs(arethesethedietaryrestric tonsandholdingtherapiesofourdecade)??

2/10/20141:49AM

6 CognitiveassessmentFamilysupport 2/9/201411:42AM

7 Morecoordinatedassessmentofspeechandlanguage,ADOSandADIR 2/9/20148:10AM

8 Morespecialistspeechandlanguagetherapiststospeedupthediagnostic pathway 2/8/20147:58AM

9 Shortertimefromidentificationtodiagnosis;betteraccesstopostdiagnostic support/coursese.g.EarlyBirdsorsimilar;nurse-ledfollowup

2/8/20144:13AM

10 Postdiagnosisinterventionsi.eEarlyBird,Cyget.Verydifficulttoaccess.Theassessemntsitselfarenotaproblem

2/7/20142:42AM

11 Forhealth-specialistnurseswhoperformasign-postingrole(asIgetnumerousphonecallsfromparentsrethis,evenafterdischarge).Foreducation-everything!

2/7/20142:28AM

12 Improvedlearningandpsychologicalassessments.Moretime. 2/6/201411:50PM

13 Iwouldl iketoassessthechildaspartofMDTasrecommendedbyNICEguidance 2/6/201412:42PM

14 Improvethemultidisc iplinary/multiagencyteamwork. 2/6/201412:30PM

15 agoodscreeningsystemwithaspecialistnurseaSALTasessmentFIRSTaneductaionalpsychologyassessmentasroutine!(specifiedcriteria)

2/6/20147:15AM

16 resourcesforsensoryprocessingdifficulties 2/6/20145:48AM

17 Improvedservicesandsupporttoparentsandschoolsduringtheperiodbetweenrecogniti ionofsymptomsandassessment/diagnosis;alsoforthosewhodon'thavesuffic ienttomeetadiagnosisbutc learlyhavesimilardifficulties,

2/5/201411:40PM

18 Allofitbutparticularlypostdiagnostic support. 2/5/20141:55PM

19 Shorterwaitingtimesforinitialassessmentsfollowingreferralbytheentireteami.eSpeech&Langtherapist,Paediatric ianPsychologistetc&earlyinterventionwithspecific programsi.e.PECSTEACCHetcwithparental&educationalinvolvement

2/5/201411:29AM

20 LD/Autismnurse/autismadvocate/mentorSALTreviewMAATteamtobefullyresoursedMorepostdiagnosissupport(refundingofearlybird/whatnow)Autismfriendlysupportinschools

2/5/20148:53AM

21 tohaveamuchshorterwaitingtimetofirtsappointment-wearelookingatwaysofchangingservicedeliverybutcurrentlydonothaveenoughpaediatric ianswithsuffic ientexperienceandthelocalCAMHSteamalsoreferchildrenandyoungpeopletous

2/5/20148:48AM

22 reducewaitingtimesalthoughthishasimprovedsinceintroductionofcommunityassessments 2/5/20147:42AM

23 1.SupportfromOT,SLT,EdnPsychology,ClinicalPsychology,CAMHSetc. 2/5/20146:29AM

24 supportfrompsychologyservices.-bothc linicalandeducational. 2/5/20146:21AM

25 involveeducationalcolleaguesinassessmentprocess 2/5/20144:10AM

26 Moreresourcesfordiagnostic workandsupportafterthediagnosis 2/5/20143:54AM

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27 WaitingtimeAvoidreplicationofassessmentsoerandoveruseastandardisieddiagnostic toolADOSDISCOandnotbereliantonindividualpeoplesopinionwhichamyskewoverallfeelingaboutthechild

2/5/20141:29AM

28 morestandardisedandstructuredmultiagencyassessment 2/5/201412:17AM

29 EDUCATIONALPSYCHOLOGYinvolvement 2/4/20141:14PM

30 Iwouldl iketotobemoreofateamapproach/jointassessmentinc ludingteammeetingtodiscusseachcase.ItrytodothisinformallybuttherearedifferentSALTsinvolved,evenmoreEdPsychs(andtheyaren'talwaysinvolvedanyway)soitisdifficult

2/4/201412:47PM

31 Moreresources/teammemberstodoassessmentstoreducewaitingtime,butmoretherapistprovisiontodointerventionsandcontinuethatpostdiagnosis/assessment.

2/4/201412:40PM

32 Supportforfamilies 2/4/201412:36PM

33 Streamlinetheprocessandprovidemorespecialiststaffforassessmenttomeetthedemand.Providesupporttoparentswhichdoesnotdependonadiagnosis.Lobbyforschoolstodothesame.ImproveservicesforSleepmanagement,toiletingandalsobehaviourmanagementwhenCAMHSorLDcriteriaarenotmet

2/4/201410:29AM

34 Whenourlocalityteamsforassessingchildrenfor?ASDweresetuptheyinc ludedacommunitypaediatrc ian,S<andeducationalpschologist.Thelatterhassincewithdrawnfromtheteam.Iwouldl iketoseeamoveawayfromspecific diagnostesdeterminedteamsandmovetowardsneurodevelopmentalassessmentteamswherechildrenwouldhaveaccesstoarangeofprofessionalsdependingonneedandconcerns/issuesbeingassessed.Currentlywhatwearemissingfromourteamsinordertosetthisupispsychologyinputanditwouldbegreattohaveclinicalpsychologyassessmentavailableforthosechildrenwhereitisfelttoberequired.Currentlychildrencangothroughtheassessmentprocessandcomeoutwitheitheradiagnosisornot,butnotnecessarilyhavinghelpful,usefulinformationabouttheirfunctioningtoassistfamiliesandschoolsintheirongoingmanagementandcare.Incaseswherewehavehadaccesstocognitiveassessmentsforaspecific reasonithasgreatlyenhancedtheoverallusefulnessoftheassessmentinexplainingthechildandtheirongoingcare.

2/4/20149:25AM

35 Betterparentalsupportfordifficultpreschoolchildren. 2/4/20149:24AM

36 Lessexpectationthatadiagnosiswil lsomehowbetranformativeintermsofsupport.MostschoolsarealreadywellsetupfordealingwithchildrenwithASDandlittlechanges.However,theparentsbecomeincreasinglydissatisfiedastheyexpectedthateverythingwouldsomehowimprove.Thisleadsthemtobecomeevenmorevocalthantheywerebeforeandevermorefrustrated.Autismissomethingtol ivewith,nottocure.Weneedtochangethewholefocusofthewaywedealwiththisconditionandthinkofoutcomemeasuresintermsoffunctionratherthandiagnosis.Obviously,somemedicalconditionsneedtobeexplored/ruledout.Forthemajority,itwouldalsobebestifadiagnosisofASDdidnotleadtoobtainingDLA-itistheprospectofmoneythatdrivessomanyparentsandyetthisisanunspokenfactor.Again,thereareobviouslycaseswhereitshouldbeawardedandcaseswhereinfactitisnotbutingeneral,oncepeopleknowthattheyneedadiagnosisinordertohaveapossibil i tyofgettingit,theyarekentohavetheirchildlabelledwhetherhelpfultothechildornot.

2/4/20149:14AM

37 directbehaviouralc l inicaladvicewhenneeded-don'tmeetCamhscriteria/noonewithexpertiseinlowertierCmahs

2/4/20148:40AM

38 Improvedaccesstopostdiagnosisresourcesandworkshops 2/4/20148:24AM

39 SensorysupportHolistic therapy-relaxationtechniques/sleepc linic 2/4/20147:55AM

40 fasterdiagnostic process.waitingtimesinourareaforASDis1year. 2/4/20147:20AM

41 Clearpathwaysforwhoseesthemandcorrespondingfundingtomakesureadequatetimetoseeanddealwith,fundingtosupportfamilieslongterm.

2/4/20147:01AM

42 Asabove!WeonlyhaveEarlyBird+-wewoulddearlyl ikealocalEarlyBirdProgramme-thisisinprogress.

2/4/20146:47AM

43 abitmoretime!! 2/4/20146:41AM

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44 wedonotworkinamultidisc iplinarywayinmakingadiagnosisandthisneedsimprovementtherearegreatpressuresonourservice-underfunded,assessmentscantakeupto2yearstobecompletedthereisanEarlyBirdprogrammelocallywhichisgreatbutotherfollowupisl imitedanditcanbediffuc ltoengageaservicetodealwiththeemotionalproblems,anxietyandgivebehaviouraladvicetofamiliesoccupationaltherapyisbeingl imitedevenwhensensorydifficultiesareapparentoveralltheserviceweprovideisconcerningbutwearenotsupportedtomakeimprovementswithCommissionersthatlackunderstanding,donotseeaneedandfocusonnon-medicaldevelopmentbutinsteadsupportnursingworrying,upsettinganddemoralising

2/4/20146:30AM

45 Moreintensivepreschoolsupport 2/4/20146:29AM

46 diagnostic servicesseemtobefairlywellestablishedacrossthecountry.Followupservicesespeciallyoncethechildiswithintheeducationsystemappeartobeverypatchy.Idoworrythatwhiletheeducationalprogressofachildisfollowedbyeducationalstaff,thatthewiderneedsofthechild/youngpersoncanbeoverlookedinsomecases

2/4/20146:15AM

47 MoretargetedinterventionswhenASDchildrenhavecomorbidbehaviourswhicharenotrespondingtogeneralASDfriendlystrategies-aggression,sleepproblemsnotrespondingtomelatonintreatmentorgeneralsleephygienemeasures,targetedrespiteforchildrenwithsignifivcantchallegingbehaviours.

2/4/20145:52AM

48 Reducednumbersofreferrals/tightenedreferralcriteria.Referralstotheservicehaveincreasedexponentiallyoverrecentyears.Theservicehasgrownhoweverwaitingl ists,despitetheincreasingsizeoftheteamcontinuetobelengthy.Wehavetargetstoseechildren(within13weeks)howeverthereisabottleneckthereaftertocompletionoftheassessment

2/4/20143:50AM

49 ashorterwaitingl istformeandtimelyaccesstootherdisc iplines-wholeservicechronicallyandcriticallyunder-fundedandunder-resourced

2/4/20143:38AM

50 Ashorterwaitingl istforassessments.ImprovedaccesstoPsychologysupport,asthisisvitaloncethediagnosishasbeenmadeandthereisaverylongwaitingl istinourareaatpresent.

2/4/20143:35AM

51 Amultidisc iplinaryserviceworkingunderonerooftoaddressthevarietyofdifficultiesthatpresent-sleep,dietary,behaviouraletcandbetterawarenessofthedifficultiesfacedbytheautistic populationofchildreninmainstreameducation.

2/4/20143:21AM

52 Timingofassessment.LocallywellestablishedAutismOutreachTeamwhodomostofthetherapeutic stuffrecommendedbyNICE.ThismakesthingsmuchbetterforfamiliesandIdon'tthinkthatworkingwithyoungpeoplewithAutismwouldbeasrewardingwithouthavingsuchaservice.

2/4/20143:16AM

53 Greatercapacityinbothdiagnostic andinterventionteams.Ourprocessesarec linicallysound,butwedon'thavethemanpowertosupportthefamiliesaswewouldl ike.

2/4/20142:49AM

54 WeneedaNICEguidancecompliantpathway-wehaveaverydefic ientserviceatthemomentandareinthemiddleofpersuadingcommissionerstofundSLTstodoADOS,OTinput,someonetodocognitiveassessmentsbeingthemaindefic itswhichimpactonthechildren

2/4/20142:41AM

55 BehaviouralsupportforASDchildren 2/4/20142:32AM

56 Shorterwaitingl istfordiagnosisMoreplacesinASDspecific schoolsMoretrainingforallteachersinASD

2/4/20142:29AM

57 Thecoordinationofamulti-disc iplinaryassessment-wihtoutoomuchdelay.IncreasedSLTandc linpsychologyfollowup-veryl imited/noneatpresent

2/4/20142:00AM

58 Shorterwaitingtimesforassessment. 2/4/20141:58AM

59 Specific servicesinc ludinglocalOTforchildrenwithsensoryneedsWehaveadiagnosticservicebutrelyonalocalcharitytoprovidemuchsupportpostdiagnosiswithuncertainfunding

2/4/20141:48AM

60 Specialistnursetooffersupporttofamilies 2/4/20141:29AM

61 Everything!Moretime,morepeopleespeciallySpeech&Langtherapyandspecialistteachers,restoresomeofthedecimatedservices,bringbackpapercopiesoftheEarlySupportbooklet

2/4/201412:53AM

62 SmarterwayofworkingwithCAMHS,moreabletotailormakeassessmentforchild/familyandsavetimeandthusseemorechildrenMorefunding!Interventionpostdiagnosisandparent"training"

2/4/201412:28AM

63 Serviceiscurrentlyoverwhelmedwithfamilieswantingadiagnosis.Iwouldl ikeabetterscreeningtool,aswellasarecogniseddiagnostic labelof"autistic traits"asmanyofthechildrenaremild.Thefamiliescangetveryaggressiveiftheydon'tgetanASDlabel-partlyastheythinkwronglythatthiswil lgetmorehelpatschool,andsotheycanc laimDLA.

2/4/201412:11AM

64 Morestreamlinedbutalsoinc lusionofnewdsm5guidelinesin3di 2/4/201412:00AM

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65 Bettercoordinationofassessment-difficultasmyself,SLT,Psychologist,edPsychallworkfordifferenttrusts!

2/3/201411:18PM

66 Timeallocation,Clinic Template,timetovisitschoolandundertakeADOS,aftersupportparticularlywithASDbehaviourswhichareverypoorincommunity

2/3/201411:03PM

67 shortenwaitingtimeforanassessment 2/3/20148:28PM

68 Anarmyofhighlyskil ledASDspecialistteacherswhoseallegianceisequallybetweenschools,familiesandprofessionalssuchaspaediatric ians;high-qualityadequateandeasilyaccessedforparents,childrenandsiblingssocialsupportandrespiteforalllevelsofASD

2/3/20144:15PM

69 Tohavemorec linicalpsychologyservicesandsupportforparentsandschools. 2/3/20142:28PM

70 EasieraccesstoservicesforchildrenwhoaresubsequentlyNOTdiagnosed(oftenforchildrenwithattachmentdisorders)

2/3/20142:18PM

71 haveapsychologistorinterestedotfortheolderones- 2/3/20141:44PM

72 CommunicationwithchildrenandADOS/3diassessmentavailablelocallyatperipheralc l inics 2/3/20141:28PM

73 Amorestreamlinedservice,nolengthywaitingl ist,multidisc iplinaryc linic -arealc linic ratherthan"virtual"c l inic wheretheinformationisprovidedinaveryfragmentedway;fortheclinic iansseeingolderchildrentohaveaccesstoeducationalpsychologyreportstohelpdifferentiatethosechildrenwithpatchylearningprofi les,aswellasCAMHSpsychiatry/psychologyinputforchildrenwithcomplexsocialhistories.Ifalltherelevantinformationcouldbeavailableintimeforthediagnostic c linic evenbetter!BetterormoreresourcesforaftercareforchildrenpostdiagnosisfromvoluntaryservicesaswellasBetterawarenessinschoolsinrecognisingchildrenwithdifficultiesandtomakereferralsinatimelyfashion

2/3/20141:24PM

74 Rapidaccesstodiagnostic c linic . 2/3/20141:14PM

75 supportforfamilies/childrenpostdiagnosis 2/3/201412:55PM

76 Post-diagnosisearlyinterventiontherapyandsupport. 2/3/201412:53PM

77 Joinsupapproachwitheducation.Morerobustcriteriatoensurethatchildrenareonlydiagnosedifthisisreallygoingtobeahelpfuldiagnosislongterm

2/3/201412:40PM

78 Shorterwaitingtimes 2/3/201412:32PM

79 SensoryimpairmentassessmentCognitiveassessment 2/3/201412:11PM

80 POSTDIAGNOSTICSUPPORT 2/3/201412:06PM

81 Morespecialistadviceandsupportforparentstomanagechild'sbehaviour. 2/3/201411:54AM

82 Quickassessmentsviasaltservicesandeducation 2/3/201411:46AM

83 Ongoingmanagementinadulthood,accesstoCBTetc.AtthemomentIhavetodischargethemat18andthereisnoadultservice.

2/3/201411:34AM

84 Pre-diagnostic support.Thereislotsthereforchildrenandfamiliesoncetheyhaveadiagnosisbutnotunti lthen.We'relookingtosetupadrop-insession,probablymonthly,wheretheycangetinformationandsupportabouttheassessmentprocess,dealingwithpracticalissuesl ikesleepingandeating,nurseryplacements,benefits,etc

2/3/201411:00AM

85 morecapacity,andmoreoutreachathome,andschool,andparticularlyforthoseolderchildrenwhohaveslippedthroughthenet

2/3/201410:59AM

86 servicestosupportfamiliesbeforeandafterdiagnosis 2/3/201410:37AM

87 Atpresentworkingmulti-displinarywithotherservicesinotherTrustsorinstitutionsisquitechallenging.Everyone'smanagerswantthemtodoasl ittleaspossibletoseemorechildreninlesstime.Wemanagebecausewehavegoodworkingrelationshipsandhavebeentryingtoworktogetherforalongtime.Itjustneedsafewkeypeopletoretireorleaveforittobecomemuchlesseffective.

2/3/201410:27AM

88 smootherdiagnostic assessmentprocess;betterabil i tytousestandardisedtesting;checklistforinitialscreening/furtherinformationgatheringthatisUKstandardisedandrecommended;parentsupportpostdiagnosisoptions(don'tthinkthissitsbestwithcommpaed;oftenanxiety/communicationorbehaviourrelated)

2/3/201410:16AM

89 Increasedawareness.PostDiagnosistargetedsupport.VideosandA1postersinwaitingroomsofembracingdifferenceandhowtocopeinsocialsituations.TacklingofAnxietywhichbringsoutmostundesirablebehaviours.BringingwholesomenutritionintotheequationMultidisc iplinaryworkingofCommunityPaedsandClinicalpsychologyWellresearchedselfassessmenttoolforsecondaryschoolchildren.

2/3/201410:04AM

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90 tohaveamultidisc iplinaryassessment.Atthemomentassessmentsaremadebypaediatric iansalone.

2/3/201410:03AM

91 1.Thatchildrenarereferredforaneuro-developmentalassessmentnotassessmentforautism2.Thattheirsocial-communicationskil lsareassessed.3.Thatall iedhealthprofessionalswerebettertrainedtorecogniseattachmentdifficultieswhichcanalsopresentwiths-cdifficulties4.ThatADOSkitsweresuppliedforthosetrainedinADOS.AlltheCPsinmyareaarenowtrainedbutonlyafewhaveaccesstothekit.

2/3/20149:53AM

92 Writteninformationtohelpparentswherewearen'tready(ortheparentsaren'tready)todoformalassessmentsforASDbuttohelpparentsunderstandwhatmighthappennextbeforethattime-Ithinkwehavegoodinformation/pathwayswhenthedecisionismadetodoformalassessments.Currentdifficultieswithwithdrawalofservicesforsomechildren-ifchildrenhavedevelopmentaldifficulties/socialcommunicationdifficultiesbutparentsarecopingwiththeirbehaviourtherearenospecialistservicesavailabletosupport/advise-onlyuniversalservices(howeveriftherearebehaviour/sleepdifficultiesthengoodservicesexist).

2/3/20149:43AM

93 Followupservicewithexpertiseinmanagementofbehaviour 2/3/20149:37AM

94 Followupservicewithexpertiseinmanagementofbehaviour 2/3/20149:36AM

95 closereducationeducationtie-inforhtepre-schoolearlyschoolchild.moreresourcetoprovideforbehavioursupporttoparentsofgroupsofdifferentcognitiveandcommunicativeabil ity

2/3/20149:31AM

96 timelinesswehavejustredonepartofourasdpathwayandamhappytotalkaboutthisfurtherAnnette.shawcross@leicspart.nhs.uk

2/3/20149:29AM

97 Thereisalongl istinourarea.WenowhaveastrategygroupwitheducationandthecommissionerisnowinterestedsoIammorepositiveaboutthefuturethanbefore.Behavioursupportintheearlyyearsisabigone.

2/3/20149:22AM

98 Supportinschoolandwithpsychology 2/3/20149:21AM

99 Avoidfluctuatingwaitingl istPostdiagnostic supportessential 2/3/20149:21AM

100 ProvisionofOTandEducationservices(bothareunderstrainatpresentandsomuchmorecouldbeofferedifwehadadequateprovision

2/3/20149:21AM

101 Thetimelinessoftheassessmentsandthetimepostdiagnosis.AtthemomentwehavesomanybeingreferredforassessmentthatIfeelIcanjusttodothebareminimumtodeliverarelativelyequitableservice

2/3/20149:09AM

102 Loads-morepsychologyinputbothcontributingtodiagnosisandtomofifying/supportingASDbehaviours-andmoresupportwithinthehomeforparents.Alsobetterunderstandingwithinschools

2/3/20149:08AM

103 Postdiagnostic supportforfamilies. 2/3/20149:05AM

104 knowingthatthereferraliscomingandhavingmoreinformationinadvanceofthefirstconsultation-onlyknowwhatproblemiswhenseethereferralletterondayofc linic havingmorepostdiagnosissupportmorejointworkingwithSALT/Educationespecail lyfortheunsure/subtlecases

2/3/20149:03AM

105 Speedierassessments 2/3/20149:01AM

106 Weneedmuchmoresupportafterdiagnosis,beahvioursupport,en=motionalsupport,communicationsupport,sensorysupport,sleepsupportIdontfeelthediagnosisistheissuenowitiswhathappensafterthat

2/3/20149:00AM

107 betterengagementandassessmentbylocaledpsychs. 2/3/20148:59AM

108 morecommitmentfromnonheathcolleagues(education) 2/3/20148:58AM

109 Speedofassessmentprocess 2/3/20148:58AM

110 Followupc linic 2/3/20148:56AM


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