Studentname:

Mia

Project#:
1

Workingversionofprojecttitle:
TheAutismImpact

ResearchProposalfirstdraft

1.

Statetheessentialquestion
Howdoesautismaffectthefamilymembersofapersonwithautismandwhatcanbedone
tosupportfamiliesfacingthechallengesthatautismcreatesforthem?

2.

Statetheprimaryresearchquestion

Whataretheexperiencesthatafamilymemberofanautisticpersonhasandhowcanthese
experiencesbedocumentedandusedtosupportfamiliesgrapplingwithsimilarissues?

3.

Statethesecondaryresearchquestionsyouhave(makesurethesearefairly
comprehensiveandextensive).

1. Whatarethestatisticsoffamiliesthathaveachildwithautisminit?
2. WhatarethestatisticsonthenumberofchildreninagivenfamilyinAmerica?How
doesitcorrelatewiththeaverageamountofsiblingsinafamily?
3. Whatarethedailychallengesthatanautisticchildhas?Andifthereareany,howdo
thesedailychallenges(gatheredfromthepriorquestion)affectfamilymembers?(i.e.
parents,siblings,grandparents)
4. Whatarethelongtermstrugglesthatafamilyhasstemmingfromafamilymember
havingautism?
5. Howhasthefamilymembersoutlookonlifechangedsincethediagnosis?
6. Whatdofamiliesasawhole,andfamilymembersindividualllyworryaboutwhen
thinkingofthefuturewithautisminit?
7. Inwhatwaysdoestheviewofaparticulartimeoroccurence(mosthappytime,most

frighteningtime,mostmemorable)differfromparenttosibling?
8. Howdoesautismaffectthefamilydynamicsineverydaylife?
9. Howdoesautismaffectsiblingsemotionally?Howdoesitaffectparentsemotionally?
Atwhatpointdothesefeelingscoincide?
10. Howdoesautismimpactthedailylifeofasiblingofanautisticperson?Ofaparentof
someoneonthespectrum?
11. Howhasautismlimitedasiblingsaspirations,orlimitedtheminanyway?
12. Howhasautisminfluencedtheirdreamsforthefuture?
13. Howhasautismlimitedaparentsdreams?
14. Whatsocioeconomicfactorsofhavingautismwithinafamily?
15. Whatistheimpactthatautismhasonfinancesinafamily?
16. Whatistheimpactthatautismhasonentirefamilyoutings?
17. Whatarethejoysofhavingasiblingwithautism,orachildwithautism?
18. Whatarethechallengesthatsiblingsofautisticchildrenhave?
19. Howcanwehelpchildrenwithoutautismacceptautism,adapt,andcope?
20. HowcanIensurethatmymessageisspreadtoadultparentsbutalsototeenage
siblings?

4.

Descriptionofwhatthefinalproductwilllooklike.

Myprojectwilltakeformintheplaceofabook.Iwillcreateabookofshortstoriesinfirst
personprose,inordertorecountthecharacterspersonalexperiencewithautism.Iwilltake
sibling,mother,andfatherspointofview,andjuxtaposetheirviewsononeparticular
occurrence.Forexample,themomentwhentheyfirstreceivedthediagnosis,themostjoyous
recollection,themostfrighteningandsoforth.Myhopeisthatbywritinginalessformal
format,moreteenswillbecompelledtoreaditandgainnewknowledgeonautism,orwill
impactteensthataresiblingsofapersonwithautisminapositiveway,showingthemother
peoplesexperiences.

1. Iwillfirstdosomebackgroundresearchonfamiliesandautism,mainlylookngfor
factsandstatistics.
a. Iwillfindthestatisticsonhowmanyfamiliesareaffectedbyautism.
b. Iwillalsofindouttheaverageamountofchildrenafamilyhasanddothemath
tofigureoutroughlyhowmanysiblingsinAmericaare(orverypossiblycould
be)affectedbyanautisticbrotherorsister.
c. ThenIwillfindoutotherstatisticssuchasboysvsgirlsthathaveautism,or
howcommonitistohavemultiplecasesofautisminonefamily.
d. Iwillalsoincludehowthisnumberisincreasing,andIwillbedoingresearch
fromdatabasesandbookstobackthesestatisticsup.
e. Hopefully,bydiggingupallofthenumbers,peoplewillhavetoacknowledge
howpressingacaseautismisandjusthowmanypeopleautismaffectsbesides
thepersondiagnosed.
f. FromthereIwouldliketocreateafewinfographicstodisplaythisinformation.
2. Iwillalsoconductresearchthroughinterviews.
a. Iwillfirstcontactfamilieswithautisticchildren,frompeoplethatIknowfrom
school,myautismsiblingsupportgroup,andpeoplemystepmotherhas
contactwithfromherownsupportgroups.Ialsowillbeactiveinfindingnew
families.(forinstance,thispastweekend,IwenttoRaunKaufmanslectureon
AutismBreakthrough,andmetamotherfromWorcesteroftwinautisticgirls
andaneurotypicalson,whoisextremelyinterestedinhelpingmyprojectby
interviewing.HopefullyIwillbeabletonetworkenoughtohaveawidevariety
ofinterviewsubjectsofalldifferentbackgrounds.
b. IwillbeselectiveonlyinthewaythatIwillwantawidevarietyofstoriesin
mycollection.Ialsowouldnotwanttochoosetointerviewfamiliesfromthe
sameschool,infearthatparentsthatallchoseaparticularschoolmighthavea
similarmindsetwhenitcomestotheirautisticchildsupbringing.Iwantthe
poolofinterviewsubjectstobewellrounded.
c. Iwilltheninterviewaparentandsiblingofsomeonewithautism.Iwilltake
sibling,mother,andfatherspointofview,andjuxtaposetheirviewsonone
particularoccurrence.Forexample,whentheyfirstheardthediagnosis,the
mostjoyousrecollection,themostfrighteningandsoforth.
d. IwillthenusetheanswersIobtainedfromtheirinterviewsandcreateafirst
personnarrativeonwhathappenedinthoseevents,capturingfeelingsand
thoughtstodeepenthepotentialreaderofaparentorsiblingsexperiencewith
autism(perhapsevenaparentorasibling).
3. Iwillalsoresearchotherbooksthattransformedinterviewsintonarrativesinfirst
person,orkeptthemininterviewformat,andtestdifferentformatstoultimatelyform
mybook.
4. Iwillhavetodecidewhetherornottocreateaworkofhighlyinfluencedbytrue
storiesfiction,orabookofinterviewssetupinanarrativeformat.Keepingitasan
interviewformatwouldallowmetoplacenamestorealpeople,andperhapsmakesure
thatauthenticityofanswersremainunequivocallyunchanged.
a. Creatingacollectionoffictionalshortstoriesallowsmetointerviewmore

peoplewhomightratherremainanonymous,butstillusetheirstoriesfor
anothercharacter.Italsoallowsfortheintervieweetogivemoregenuine
answerstosomeoftheharderquestionsbecausethereisnofearofawhat
happensifmyparentisoffendedbysomethingIsay,orwillsomeonethinkI
amrude/selfish/childishformytruefeelings?Thatbeingsaid,itwouldalso
bemorecreativeandfun,andachallengetoremainastruetothepersonI
interviewedaspossible.Italsoisanewformofabookfocusedonautism,
becausemostbooksaremedicalornonfictionbooks.Iamhopingthatby
writingmoreinafictionformat,itwillnotbedauntingforteenagerstoread,
andwillprovideliteraturedirectlyaimedforsiblingsaswellasparents.
b. ThenIwillwritemybookbasedoffoftheinformationabove.
5. ThenIwillpresentmybook,perhapsmakingapowerpoint,aswellasreadexcerpts
frommybookandtalkaboutwhyitissuchanimportant,relevantandpressingmatter
tospreadawarenessaboutautisminfamilies.
6. Iwillalsotrytomakeawebsitewhereanysiblingcansharetheirstory.

5.

Statehowthisresearchwilladvancethefrontiersofknowledgeand/ormatter
andbesignificantinameaningfulway.

About1in68children(or14.7per1,0008yearolds)wereidentifiedwithASD.Itis
importanttorememberthatthisestimateisbasedon8yearoldchildrenlivingin11
communities.ItdoesnotrepresenttheentirepopulationofchildrenintheUnitedStates.
Thisnewestimateisroughly30%higherthantheestimatefor2008(1in88),roughly60%
higherthantheestimatefor2006(1in110),androughly120%higherthantheestimatesfor
2002and2000(1in150).
Thesenumbersmeanthatthenumberoffamilymembersaffectedbyautismisgrowing
exponentially.Autismoverwhelminglychangesfamilylifestylesandoftenputstheentire
familyinextremestress.Butwhereistheliteratureonshowingthewaythroughthestruggle?
Orevendocumentationthathardshipcausedbyautismdoesexist?Theredefinitelyisnot
enoughliteratureaimedtowardssiblingsofautisticpeople.Italsoisanewformofabook
focusedonautism,becausemostbooksaremedicalornonfictionbookswhichisahugeturn
offformanyteens.Iamhopingthatbywritingmoreinamoredigestible,narrativeformatthat
itwillnotbedauntingforteenagerstoread,andwillprovideliteraturedirectlywrittenwith
siblingsaswellasparentsinmind.Ialsohopeforsiblingsandparentstounderstandeach
otherbetter,andperhapsincreatingthisbookofinterviewsandstories,therewillbenew
feelingsandthoughtsshared,thatneverhadthechancetobreatheinopenair.Bycreatingthis
book,asamodeofawareness,Ihopetoshedlightontheroleofthesiblingandwhatthey
endureaperspectivetoooftenneglected,butneverthelessimportant.ButIalsohopetotell
thestoriesoftheparentsotheirchildrencanunderstandthembetteraswell.Hopefullythese
shortstorieswillbereadbypeoplewhoarenotdirectlyaffectedbyautismaswell,sothey
maygainperspectivesaswell.Intheend,mygoalistohelpreadersgainanewperspectiveon
thiscomplextopicofautism,readersrangingfromcommunitycitizens,peers,teachers,family
memberandevensiblingandparentsofanautisticchild.

6.

Stateanticipatedpotentialpitfallsorproblemsofthisresearcheffort
Difficultyremainingimpartial,unbiased,andobjectivetootherpeoplesstories
(howeverIthinkthatifIphrasequestioncorrectlyandIdontcornerpeopleintoall
tellingmewhatIthinkistheanswer,thiswillberelativelyeasytoavoid.EvenifI
weretotakethepathoffictionalstories,Iwouldnotaddanythingtoaneventtomake
ituntrueorunrealistic.
Creativewritingtakestime,aswellasrevisionandmorerevision.Timewillbea
challenge.
ConductingInterviewswillbechallenging,duetothefactthatIwanttotakefamilies
fromalldifferentdemographics,schools,towns,etc.
Actuallygettingmybookofshortstoriestothepublic,andpeopletoreadit.Isiteven
possibletopublishit?HowwouldIdoitifIwantedtodoit.

7.

Stateyourtentativeplantolocateandreviewtheliteraturerelatedtoyour
project.Thisincludesprinted/publishedsourcesandonlinesources.[The
researchstrategy,part#1]
7. Iwillfirstdosomebackgroundresearchonfamiliesandautism,mainlylookingfor
factsandstatistics.
a. Iwillfindthestatisticsonhowmanyfamiliesareaffectedbyautism.
b. Iwillalsofindouttheaverageamountofchildrenafamilyhasanddothemath
tofigureoutroughlyhowmanysiblingsinAmericaare(orverypossiblycould
be)affectedbyanautisticbrotherorsister.
c. Iwillalsoincludehowthisnumberisincreasing,andIwillbedoingresearch
fromdatabasesandbookstobackthesestatisticsup,andbydiggingupallof
thenumbers,peoplewillhavetorealizewhatapressingcaseautismisandjust
howmanypeopleautismaffectsbesidesthepersondiagnosed.
d. FromthereIwouldliketocreateafewinfographicstodisplaythisinformation.

8.

Stateatentativeplanforresearchanddatacollection.(Datacollectioncantake
multipleformssurveys,testgroups,interviews,observations,etcetc.Thiswill
differfromprojecttoproject.[Theresearchstrategy,part#2]
8. Iwillalsoconductresearchthroughinterviews.
a. Iwillfirstcontactfamilieswithautisticchildren,frompeoplethatIknowfrom
school,myautismsiblingsupportgroup,andpeoplemystepmotherhas
contactwithfromherownsupportgroups.Ialsowillbeactiveinfindingnew
families.(forinstance,thispastweekend,IwenttoRaunKaufmanslectureon
AutismBreakthrough,andmetamotherfromWorcesteroftwinautisticgirls
andaneurotypicalson,whoisextremelyinterestedinhelpingmyprojectby

interviewing.HopefullyIwillbeabletonetworkenoughtohaveawidevaritey
ofinterviewsubjectsofalldifferentbackgrounds.

b. IwillbeselectiveonlyinthewaythatIwillwantawidevarietyofstoriesin
mycollection.Ialsowouldnotwanttochoosetointerviewfamilesfromthe
sameschool,infearthatparentsthatallchoseaparticularschoolmighthavea
similarmindsetwhenitcomestotheirautisticchildsupbringing.Iwantthe
poolofinterviewsubjectstobewellrounded.
c. Iwilltheninterviewaparentandsiblingofsomeonewithautism.Iwilltake
sibling,mother,andfatherspointofview,andjuxtaposetheirviewsonone
particularoccurence.Hopefullythroughtheiranecdotes,Iwillbeableto
uncoverthoughtsandfeelingsonautismitself,familydynamicsandtheevery
dayimapcts.Forexample,whentheyfirstheardthediagnosis,themostjoyous
recollection,themostfrighteningandsoforth.

9.

Stateatentativeplanforresearchanddataanalysisandinterpretation.[The
researchstrategy,part#3]
Iwillcalculatefromtheotherstatisticstheamountboysvsgirlsthathaveautism,or
howcommonitistohavemultiplecasesofautisminonefamily.
Iwillalsofindouttheaverageamountofchildrenafamilyhasanddothemathto
figureoutroughlyhowmanysiblingsinAmericaare(orverypossiblycouldbe)
affectedbyanautisticbrotherorsister.
FromthereIwouldliketocreateafewinfographicstodisplaythisinformation.

Iwillalsoresearchotherbooksthattransformedinterviewsintonarrativesinfirst
person,orkeptthemininterviewformat,andtestdifferentformatstoultimatelyform
mybook.

IwillusetheanswersIobtainfromtheinterviewsandcreateafirstpersonnarrativeon
whathappenedinthoseevents,capturingfeelingsandthoughtstodeepenthepotential
readerofaparentorsiblingsexperiencewithautism(perhapsevenaparentora
sibling).

9.

Listthetoolsyouwillneedtocompletethiseffort.Identifytoolsthatmight
currentlybeunavailabletoyou


Booksandaccesstodatabasesforresearch
Transportationandtimetoconductinterviews

10.

Budget:whatmaterialsdoyouanticipateneedingforyourproject?Please
providealistwithquantitiesandanapproximatecostperitem,alongabrief
descriptionofwhyyouneedthisforyourproject.Usethechartbelowfeelfree
toaddmorecellsifyouneedthem.

item

quantity

costperitem

whyyouneedthis
itemforyour
project

Printingtheactual
book?

Becausethiswould
bemyfinalproduct.

11.

Bibliographyearlydraft.Thisbibliographymustincludeatleast5books,5
scholarlyjournalarticles,5websites,andleastonepotentialsourcewhoyou
mightinterview.Useproperbibliographiccitation(MLAorAPAformatyour
choice).YouarewelcometouseEasyBiborrefertotheformattingtemplate
createdbyPurdueUniversity:https://owl.english.purdue.edu/owl/Explainwhy
youanticipate(atthispoint)thatthesesourceswouldberelevant.

1. Books

Garvin,Eileen.HowtoBeaSister:ALoveStorywithaTwistofAutism.New
York,NY:Experiment,LLC,2010.Print.

Johnson,Jane,andAnneVanRensselaer.Siblings:TheAutismSpectrum
ThroughOurEyes.London:JessicaKingsley,2010.Print.

Thesewouldbegoodbecausetheyarebooksaboutsiblingsthatalreadyexist.

Kaufman,BarryNeil.Sonrise.NewYork:Harper&Row,1976.Print.
Thisisthestoryoftehrecoveryoftheirchild.
Thoms,Annie,andTareshBatra.WithTheirEyes:September11th,theView
fromaHighSchoolatGroundZero.NewYork:HarperTempest,2002.Print.
Thisisabookcreatedfrominterviewsbuttoldinaninterestingformat.

Volkmar,FredR.,andLisaA.Wiesner.APracticalGuidetoAutism:What
EveryParent,FamilyMember,andTeacherNeedstoKnow.Hoboken,NJ:JohnWiley
&Sons,2009.Print.
Thisisaguideforparentsandsiblings.
2. ScholarlyJournalArticles

Cebula,KatieR."AppliedBehaviorAnalysisProgramsforAutism:Sibling

PsychosocialAdjustmentDuringandFollowingInterventionUse."JournalofAutismand
DevelopmentalDisorders42.5(2012):84762.Web.

Hastings,R.P.(2003a).Briefreport:Behavioraladjustmentofsiblingsof
childrenwithautism.JournalofAutismandDevelopmentalDisorders,33,99104.
Fisman,S.,Wolf,L.,Ellison,D.,Gillis,B.,&Freeman,T.(2000).Alongitudinal
studyofsiblingsofchildrenwithchronicdisabilities.CanadianJournalofPsychiatry,45,
369375.
Bagenholm,A.,&Gillberg,C.(1991).Psychosocialeffectsonsiblingsofchildren
withautismandmentalretardation:Apopulationbasedstudy.JournalofMentalDeficiency
Research,35,291307.
Cuskelly,M.(1999).Adjustmentofsiblingsofchildrenwithadisability:
Methodologicalissues.InternationalJournalfortheAdvancementofCounselling,21,
111124.

Allofthesearestudiesdoneonsiblingswithautismandhowtheycope.

3. Websites
CentralIntelligenceAgency.CentralIntelligenceAgency,n.d.Web.17Oct.
2014.<https://www.cia.gov/library/publications/theworldfactbook/geos/us.html>.

"Home|AutismSpeaks."AutismSpeaks.N.p.,n.d.Web.18Oct.2014.
<http://www.autismspeaks.org/blog/2013/02/12/25thingsaboutgrowingautismsiblin
gredux>.
Harris,Sandra,Ph.D."SiblingsAutismSociety."AutismSociety.Autism
Society,n.d.Web.17Oct.2014.
<http://www.autismsociety.org/livingwithautism/familyissues/siblings/>.

"TalkAboutCuringAutism(TACA)."TalkAboutCuringAutism(TACA).
N.p.,n.d.Web.19Oct.2014.<https://www.tacanow.org/>.

UnitedStatesCensusBureau.N.p.,n.d.Web.18Oct.2014.
<http://www.census.gov/>.
TheseallprovideinfoonthebackgroundresearchIhopetodo.