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A descriptive study of the experiences of growing up with a sibling who has autism Jensen, Shirley Marie 1992

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A DESCRIPTIVE STUDY OF THE EXPERIENCES OF GROWING UP WITH ASIBLING WHO HAS AUTISMbySHIRLEY MARIE JENSENB.A., The University of British Columbia, 1972Dipl. Ed., The University of British Columbia, 1973A THESIS SUBMITTED IN PARTIAL FULFILLMENT OFTHE REQUIREMENTS FOR THE DEGREE OFMASTERS OF ARTSinTHE FACULTY OF GRADUATE STUDIES(Department of Counselling Psychology)We accept this thesis as conformingto the required standardThe University of British ColumbiaJuly 1992©Shirley Marie Jensen, 1992In presenting this thesis in partial fulfilment of the requirements for an advanceddegree at the University of British Columbia, I agree that the Library shall make itfreely available for reference and study. I further agree that permission for extensivecopying of this thesis for scholarly purposes may be granted by the head of mydepartment or by his or her representatives. It is understood that copying orpublication of this thesis for financial gain shall not be allowed without my writtenpermission.(Signature)Department of  Counselling PsychologyThe University of British ColumbiaVancouver, CanadaDate  September 24/92  DE-6 (2/88)iiAbstractThis study explores the range of experiences of growingup in a family where one of the children has autism. Theexperiences of the non-handicapped siblings, their emotionalresponses, and their coping methods were studied. This wasan exploratory investigation in light of the rarity ofresearch; an attempt to try to describe something of thesignificance of the experiences of siblings. A case studyapproach is employed using as primary participants threeteen aged children with siblings who have autism. In depthinterviews focus upon the primary participants to explorethe dynamics and their subjective interpretations of theexperience of growing up with their autistic brother orsister. The volunteer participants had lived with theirhandicapped sibling for at lest five years and hadexperienced no recent life traumas such as recent familydeaths or parental separation.Each of the experiences decribed in this study isunique, describing the experiences of the primaryparticipants from their own perspective. From thesesexperiences, common issues emereged including various formsof responsibility, restrictions, privacy, and acceptance.These issues are examined identifying some common themes aswell as variations on the themes.iiiTable of ContentsAbstract	 iiAcknowledments	Chapter I. Introduction	 1General Topic 	 1Previous Investigations	4Research Question 	  6Rationale 	  6Approach 	  8Chapter II. Literature Review	10Autism 	  10Family 	  17Siblings 	 29Qualitative Research 	 35Case Study 	 36Chapter III. Methodology 	 38Personal Perspective 	 38Design 	  42Procedures 	 43Selection of Participants 	 43In-Depth Interview 	 44Analysis 	 48Results 	 48Reliability and Validity Issues 	 49Construct Validity 	 49ivInternal Validity 	 50External Validity 	 50Reliability 	  50Chapter IV. Case Portraits 	 52Portrait of Asia. 	  52Portrait of Mark	  66Portrait of Stuart	 78Chapter V. Discussion. 	  94Introduction 	 94Findings 	  94Overview 	 94Background 	 96Responsibilities 	 105Restrictions 	 109Privacy 	 111Acceptance 	  113Limitations 	 117Theoretical Implications 	  118Practical Implications 	 121Implications for Future Research. 	  123Summary 	 125References 	  128Appendix A - Letter of Introduction 	 134Appendix B - Summary Sheet 	 137Appendix C - Consent Form 	 139VAcknowledmentsThere are a number of people I would like to thank fortheir contribution to the process and completion of thisproject. It is with a sincere sense of gratitude andpleasure that I thank the members of the families who agreedto participate in this study. Without these people who gaveso generously of their time and participated so thoughtfullythis study would not have taken place. I was aware of themany competing obligation and pressures on their time and amhonored by their commitment.I would also like to thank Natalia Bouvier from ThePacific Association of Autistic Citizens for herco-operation, interest, and initiative which allowed mystudy to take place at all. I would further like to thankNatalia for providing me access to the families whoparticipated in this study.I would next like to thank the chairman of my thesiscommittee, Dr. John Allan for his patience, kindness, andunfailing assurance throughout the study. I am indebted tohim for his support and leadership through various crucialmoments. I would also like to thank the members of mycommittee, Dr. Judith Daniluk and Dr. Larry Cochran fortheir interest, time, and clarity of though given from theoutset which indeed allowed this study to be achieved atall. I thank all of the above for their substantivesuggestions, and their support.viOn a more personal note I would like to thank myfriends, my mother and sister for their continued supportwhich enabled me to rely on consistent back up when neededfor the extra child care obligations that are part of dailyliving but which interfere with the writing of a thesis.They were all there giving support throughout this work. Iwould like to thank my children for teaching me about normalmotherhood thus providing me with valuable insights intomany of the realities of family life. I would like to thankthem for teaching me how to listen to and respect the voiceof children and for giving me much joy and happiness.Finally I thank my husband and my best friend. He hasbeen my unfailing editor, critic, supporter, and right armthroughout this project. He has been a true partner throughthis process and has retaught me how fortunate we are whenwe have strength, intelligence, and love for support. Hiskeen interest in my work has allowed it to become a part ofour lives, adding richness and understanding to our lives.1Chapter I. IntroductionGeneral Topic Autism is a pervasive developmental disordercharacterized by qualitative impairments in socialinteraction and communication, and a markedly restrictedrepertoire of activities and interests (Diagnostic andStatistical Manual of Mental Disorders, 1987). Manyautistic behaviors are bizarre and tend to impact negativelyon family members. Individuals with autism may demonstrateapparent lack of awareness of people around them or mayobject to physical contact. They may have unusual bodymovements such as head banging, etc. Some also demonstratea fascination with specific items, such as spinning objects,to the exclusion of other activities. They may demonstratea resistance to any change and a rigid adherence to routine.Many children with autism develop no speech or, if speech ispresent, it may be unusual.Like all children, children with autism are members ofa family system that interacts to influence and shape thedevelopment of each family member. All family memberspossess areas of need and areas of strength. An everchanging web is woven as family members interact, change,and adjust to their internal and external world. Individualneeds and resources are constantly in flux yet these providethe thread with which the fabric of life is woven. The2presence of an autistic brother or sister adds a certainstructure to the family unit. What are the experiences likeof the family members, specifically the siblings? How doesthe family interact? What are the individual coping stylesand strategies that they have developed? In this study theexperience of growing up with an autistic brother or sisterwill be described.Growing up can be a challenging process. It is a timefilled with opportunity and change. There are times ofexhilaration and pleasure as well as times of pain andsorrow. Being a brother or sister adds unique dimensionswhich both intensify, and broaden this experience. Siblingrelationships outlast most other relationships in time(Powell & Ogle, 1985). We know our siblings longer than weknow most others in our lives. The sibling relationship iscomplex, and dynamic. Issues of independence, rivalry,sharing, identity and intimacy are but a few of the hurdlesencountered amongst brothers and sisters. It seems logicalthen that sibling relationships would play a highlyinfluential role in development (Lobato, 1990). Further tothis, it follows that the presence of a severely disabledbrother or sister would play a significant role in shapingthe day to day experience of siblings.The research dealing with effects of chronic illness ordisability on families and siblings is as varied as the3people studied and the findings are conflicting (Seligman,1983a; Featherstone, 1982; Knafl & Deatrick, 1987; Senapati& Hayes, 1988; Dyson, 1988). Each handicap or disabilityhas different features of its own and within each handicapthere are individual variations. Autism is no less diversethan other disabilities. Individuals with autism range fromsocially competent to socially incompetent, and from beingseverely retarded to intellectually adept (DeMyer, 1979;Gerdtz & Bregman, 1990). Add to this a variety of externalfactors such as age, family size, gender, socioeconomicstatus, religious affiliation, and cultural background andthe richness of variation becomes broad indeed.Being the sibling of a disabled brother or sisteralters the daily lives and experiences of children. Oftenyounger siblings must adapt to becoming superordinate intheir relationships with a severely handicapped sibling andto bettering him in all areas of development (Rodger, 1985).Non-disabled siblings may have to adjust to increasedresponsibilities and decreased attention from parents(Seligman, 1983a; Seligman & Darling, 1989). Parentalexpectations may be very high for the non-affected childputting him or her under pressure to perform in order tosomehow compensate for the affected child (Farber, 1975).4Previous Investigations Referring to the body of literature on effects ofchronic illness or disability on families and siblingsKnafl and Deatrick (1987) state, "it presents anoverwhelming and confusing body of information characterizedby competing hypotheses, conflicting findings, and tentativeconclusions" (p. 300). Views range from a handicappedperson having positive effects on the family system(Cleveland & Miller, 1977; Grossman, 1972; Beavers, Hampson,Hulgus & Beavers, 1986), to having negative effects (Cirillo& Sorrentino, 1986; Breslau, 1982). Rodger (1985) believesthat the presence of a handicapped child is a chronicsituation which family members may perceive as interferingwith successful attainment of goals in family life.Siblings of disabled brothers and sisters experience specialconcerns regarding themselves, their families, their role inthe community and the future (Powell & Ogle, 1985).Seligman (1983b) states that a handicapped child in thefamily may offer normal siblings "unusual opportunities forgrowth", or "may lead to adjustment problems" (p. 529).Brothers and sisters learn from each other. The lessons areeach in their own way unique. However the lessons learnedamongst and between brothers and sisters of handicappedfamilies may be especially unique.In addition to both positive and negative consequencesof living with a disabled sibling, researchers also report5mediating factors such as age, severity of handicap, agedifference between siblings, same sex versus opposite sex,family attitude towards the child, and birth order(Grossman, 1972; Farber, 1960; Lobato, 1983; Breslau,Weitzman & Messenger, 1981). These issues will be discussedfurther in the literature review section in chapter two.These studies provide a significant amount ofinformation relevant to this topic. However, in many casesit is non-definitive and sometimes contradictory.Relationships and interrelationships are difficult processesto define, describe and understand. However, trends andtendencies can provide helpful clues for understanding,supporting, and recognizing the varied experiences of theseimportant family members.Research on families with an autistic member, ingeneral, and on siblings of the autistic member,specifically, is more difficult to find. Many aspects ofautism are being studied today from a medical andeducational point of view in order to help the victimsthemselves as well as to provide tools to those who livewith and care for them. The behavioral and attitudinaldifficulties of people with autism represent major hurdlesin placing them in job settings and in integratedclassrooms. Many of the behaviors, such as head banging,being unresponsive to verbal exchanges, and engaging in6bizarre ritualistic behaviors such as hand flapping, aredestructive and disruptive. These and other behaviors aredifficult for outsiders to learn to tolerate. How dosiblings learn to deal with, understand, and cope with theuniqueness of their autistic brother or sister? Somepreliminary research cited in several studies (Seligman &Darling, 1989; Cantwell & Baker, 1984) suggests that thenondisabled brothers and sisters suffer greatly and needsupport. Autism is a significant and chronic handicap andthereby exerts much stress on each member of the familysystem (Cantwell & Baker, 1984).Research Question This study examines and describes the breadth ofexperiences of growing up in a family where a brother orsister has autism. The experiences of the siblings, theiremotional responses, and their coping methods were studied.This was an exploratory investigation in light of the rarityof research; an attempt to try to describe something of thesignificance of the experiences of siblings.Rationale The rationale for this study is that the informationgained will hopefully contribute to the body of knowledgeregarding the experiences of the siblings of an autisticchild. Thus far, research dealing with siblings of thedisabled has been rare and contradictory (Seligman, 1983a;7Featherstone, 1982; Knafl & Deatrick, 1987). The researchon siblings of the autistic is even more difficult to find(Cantwell & Baker, 1984). This study will contribute to thebody of knowledge to assist in closing these gaps inknowledge.This study should contribute to a broader understandingof what it is like to be a sibling of a child who isautistic. Some preliminary research suggests that thesenon-disabled brothers and sisters suffer greatly and needsupport (Gold, 1990; Seligman, 1987). 	 Other investigatorshave found that the majority of siblings of the autisticappeared to be well adjusted (Cantwell & Baker, 1984). Thisdifference of findings indicates a need for further study tobroaden and deepen our understanding.This study should assist in broadening theunderstanding of the experiences of the siblings of theautistic child so that counselors, therapists andresearchers can be more effective in the help andtherapeutic interventions they offer. Unfortunatelysiblings have been largely overlooked in most family healthcare research in favor of the mother-child dyad, (McKeever,1983). This resultant lack of knowledge relevant tosiblings becomes especially problematic when healthprofessionals attempt to deliver family centered care tothose affected by the presence of a disability. Ultimately,8with better understanding of these experiences, we cananticipate benefits to the autistic individual that accruefrom improvement in functioning in various familysubsystems.Approach The approach to this study was through field workresearch methodology, specifically the case study in orderto gain an understanding of the day-to-day occurrences andthe resultant meaning siblings have placed upon theirexperiences. How siblings have perceived their experienceis the area of interest.This research is exploratory and descriptive. Its aimis to capture the essence and complexity of the real-lifeexperiences of these siblings while learning to understandthem in their own context. Thus a case study approach isappropriate as this methodology and best captures the livingelements of relationships and psychological processes (Yin,1989).The primary source of information for this study wasobtained through in-depth interviews focused upon the non-handicapped sibling conducted in three cases, in order tocapture, understand, and describe the essence and impact oflife with an autistic sibling. By engaging in in-depthinterviews with the siblings, the dynamics and fiber of theexperience of living with a significantly handicapped9sibling were explored. Similarities and differences ofexperiences were drawn from the portraits of these familymembers.Participants were selected in an opportunistic mannerwith a view to obtaining as rich a complement of informationfor the study as possible. The descriptions of theirexperiences are illustrations of what the experiences may beof others in similar situations. Participants were chossento be between the ages of 13 and 17. This is a criticalperiod developmentally during which time the adolescent isleaving the realm of childhood when adults speak for them,to a time when they are having to learn to speak forthemselves. To accomplish this task they must crystalizesome sense of who they are, providing an opportunity toexplore their experiences through this new level ofperception (Muuss, 1982).10Chapter II. Literature ReviewAutismAutism is both a behavioral syndrome and adevelopmental disability. As a behavioral syndrome peoplewith autism frequently display certain clusters of behaviorsthat distinguish them from those who are not autistic.According to Gerdtz and Bregman (1990), there are four broadcategories of behavior consistent with the diagnosis ofautism (p. 15-18). These are:1. difficulties with social relationships;2. severe deficits in language;3. severe deficits in communication; and4. other associated features such as:a. strong resistance to change in the environment;b. insistence on a routine;c. odd movements;d. behavior problems;e. Attachment to inanimate objects;f. very unusual responses to common stimuli in theenvironment;g. lack of imaginative play; andh. the presence of splinter skills;As a developmental disability the person is likely tobe disabled for life. Diagnosis of autism requires thebehaviors to be prolonged, severe, and include elements fromall four of the main categories listed above (Gerdtz &11Bregman, 1990). Autism is difficult to diagnose and thisfact contributes much to conflict and anxiety for familymembers (DeMyer, 1979). Originally, autism was consideredto be caused by abnormalities in the parent-childinteraction, and it was believed that autistic children werepotentially of normal intelligence. This laid a terribleburden of guilt and responsibility on parents. It is nowwidely accepted that over 70 per cent of these children areretarded and indeed severely so. It is widely acceptedtoday that many of the observed abnormalities in the parent-child interaction are the result of the immense difficultyin attempting to relate to an autistic child (Reid, 1985).Delays in diagnosis along with differing opinions offered byprofessionals also contribute to family stress making itdifficult to plan appropriately for the child or to begindealing with the adjustment process.People with autism vary tremendously in personality,intellectual capacities, social skills and ability to copewith the everyday demands of society (DeMyer, 1979). Paul(cited in Gerdtz & Bregman, 1990) suggests that a commonthread, even with the high functioning individual withautism, is difficulty with social relationships and the useof language.Autism was first identified by Kanner in 1943 (Gerdtz &Bregman, 1990). Autism is a rare condition with estimates12of prevalence ranging widely, due in part to difficulty indiagnosis (DeMyer, 1979). Reid (1985) reports thatincidence rates vary from two in ten thousand to five in tenthousand with males being affected more frequently thanfemales, (a four to one ratio). According to Oppenheim(1974), approximately half of autistic people do not learnto speak. Autism is a devastating disability which lastsfor life.Over the past twenty years there have been encouragingadvances in knowledge regarding education, and services forthose coping with autism (Reid, 1985). Though causes, andpossible cures are being heavily researched, there existvery few reliable answers. Gerdtz and Bregman declare, "Yetso much is still unknown, so much of what we think we knowabout autism is probably wrong, and there are stilltremendous gaps in the services many people with autism andtheir families need." (p. 14)Because so many aspects of the individual with autismare so profoundly affected and because the management of thebehavior of the individual can be so taxing, the potentialfor negative effects on the parents and siblings of theindividual would reasonably appear to be great. However,until recently, the little research that has been carriedout with this population fails to reveal any consistentdifferences between siblings of children with autism and13siblings of children without autism (DeMyer, 1979; Lobato,1990).There is little information dealing with the effectsof autism on the family. Gold (1990) states that the fewstudies that exist focus on the parents and look atconstructs such as depression. Within this realm theseparent studies have looked mainly at the mother and thenhave generalized their results to "parents".One study carried out by Gold demonstrates differencesbetween siblings of autistic boys as opposed to siblings ofnormal boys. She found that siblings of autistic boys areat higher risk for depression than are others especiallythose over the age of 12. Gold also showed that parents ofautistic boys scored higher on measures of depression andsocial adjustment problems than did other parents. Shefound also that they have more difficulty in their spousal,financial, and social roles. In autistic families themarital relationship seems strained by the unusual care-giving demands associated with the autistic boy.Insufficient emotional support from spouses emerged as acentral concern. Finally, having a young boy recentlydiagnosed with autism was more stressful than having anautistic boy who is older.In her study, Ferrari (cited in Lobato, 1990) compared48 brothers of children with autism, diabetes, and normal14healthy development. The siblings were from 8 to 12 yearsof age and were matched for demographics such as maritalstatus of parents, birth order, socioeconomic status, andfamily size. Responses to self concept questions, wereanswered by the children, and questionnaires dealing withsocial competence and behavior problems were completed byparents. Teachers rated them in terms of self-assurance andconfidence. No significant differences were found betweenthe brothers and sisters of handicapped and non-handicappedchildren in the ratings of either the teachers or parents.Similarly there were no significant differences found on thechild measure of self-concept. Interestingly the subgroupwho showed significant behavior difficulties were thesiblings of children with diabetes. The authors judged thisdifferences to be due to more recent diagnosis of diabetesthan of the developmental disorders.DeMyer (1979) studied and reported on three groups ofchildren; those with autism, those who were normal, andthose with various types of learning and intellectualdisabilities. Some of her findings are as follows. First,there were only a few detectable differences between theeffects of stress on families with autistic members andfamilies without such a member. There was no difference inthe rate of serious pathological disorders between the twogroups of family members. DeMyer did find the incidence of15reactive depression among mothers of autistic children to betwice as high as mothers of normal children. However she iscareful to mention that most of the mothers were notincapacitated. She points out that the stress of raising anautistic child can weaken the marital bond while at othertimes it can strengthen it. She detected no difference inthe probability of emotional disturbance occurring insiblings of autistic children as opposed to matched normalindex children.Wolf, Noh, Fisman, and Speechley (1989), studiedparenting stress, dysphoria, and social support separatelyfor mothers and fathers of autistic, down syndrome anddevelopmentally average children. Mothers and fathers ofautistic children were found to experience significantlymore stress. Mothers were found to have more depressivesymptoms than mothers of average children though fatherswere not found to show any differences. The stressbuffering effect of social support was confirmed and viewedas positive for all samples. Social networks of handicappedfamilies are small (Kazak & Marvin, 1984) and offer feweropportunities for social support. Wolf et. al. (1989)conclude that social support should be encouraged for bothmothers and fathers through extended family, counselling,and support groups.16Although any significant handicap creates tension inthe family, autism is perhaps more fraught with ongoinguncertainty due to our lack of understanding of its causes,and our confusion as to its treatment. Autism offers thefamily a myriad of concerns over a long period of timeresulting in part from the unpredictability of behavior andthe social implications experienced by families. Bristol(1984), states the following as constituting high riskfactors for families with an autistic child: ambiguity ofdiagnosis; severity and duration of illness; and lack ofcongruity with community norms. Further to this, Cantwelland Baker (1984) cite research indicating that families arenegatively affected by the multiple failures of theirautistic children. They note that: mothers appear to be themost severely affected; that spousal relationships areweakened; and that siblings are affected and familydifficulties do not diminish as the child becomes older.The degree of unfamiliarity of the situation tax theresources of the family and potentially leave them with lessenergy to deal with the many other challenges of an everchanging family situation.Autism is relatively rare and is therefore less wellknown than many other forms of handicap such as blindness,deafness, cerebral palsy and so on. Only recently hasautism become somewhat understood. Social awareness and17research is beginning to give some prominence to this onceunknown subject. It still remains, however, thatinformation members of the community may have is oftenculled from sensational magazine articles, emotionaltelevision dramatizations (Kaufman, 1976), or unpopulartheories (Bettelheim, 1979). Thus the family, and thereforethe siblings may feel isolated at school and set apart fromtheir peers due to popular misconceptions. Parentsthemselves must gain some familiarity with theidiosyncrasies and dynamics of autism and how it isexpressed in their child. Research in all areas of autismneeds to be more forthcoming in order for progress to bemade and understanding achieved.Family The family offers one of the most powerful influencesin our lives affecting our past, current and futuredevelopment. "The family shapes the fiber of people'sbeings in a way no other social force can begin to realize"(Framo, 1981, p. 205). The advent of a child with autism inthe family strikes hard and is a catastrophic life eventwhich may predispose them to increased vulnerability.Given that symptomatic behavior tends to surface atcrisis points in the family life cycle (Hoffman, 1981), itstands to reason that the realization of a child beingdevelopmentally delayed, specifically autistic, would bring18intense levels of stress to all members of the familysystem. Stress in this case is defined as an actual orperceived "mismatch between environment and person"(Menaghan, 1983). Powers, Gaudet, and Powers (1986) statethat family stress falls into two main categories,"normative and non-normative events". Normative eventsincludes the predictable life events that most familiesexperience while non-normative events includes occurrenceswhich are unanticipated, situational, and which place thefamily "in a state of instability and require some creativeeffort to cope with the situation" (p. 520).As autism cannot be diagnosed at birth, the child isborn and celebrated by the family as being perfect. It isnot until months and sometimes years pass that the familybegin to acknowledge there is something wrong with theirchild. The period during which diagnosis is sought andfinally decided upon is usually lengthy and agonizing. Thisis a time of prolonged stress enveloping the entire familyin a cloud of doubt, fear, and uncertainty.Hill (cited in Menaghan, 1983) defines crisis as "aproduct of event characteristics, family resources andfamily appraisals" (p. 114). Not only are there majororganizational tasks to perform in light of new information,there are new and unexpected role adjustments that have to19be made. There is the added stress due to thedisintegration of dreams, hopes, and expectations.Due to the differing amount of responsibilities that adisability incurs, the family will have to change theirlifestyle patterns to a greater or lesser degree (Rolland,1988). Parenthood reduces freedom, flexibility andindependence. The addition of a child with autism is boundto intensify these losses (Featherstone, 1982). Patterson(1988) suggests that the nature of the family rather thanthe nature of the disorder appears to be associated with theability to cope. Thus the degree to which the child is anintrusion, and how this intrusion is perceived varies withthe severity and complexity of disability, the individualand group resources of the family, and the socialenvironment into which the family belongs, its biases andsupport systems.Family members do not operate autonomously as though ina vacuum. Members are influenced and changed by othermembers and the circumstances in which they exist. A basicpremise of this study is that when a family has a memberwith very special needs, all family members will be affected(Kazak, 1989; Powell & Ogle, 1985). There is no fool-proofplan which a family should follow. Each family is unique.Each autistic child is unique and therefore the lifeexperiences of the family in relation to their autistic20member will be different. This is an unveiling of thestories, the experiences, and problems, which siblings infamilies with autistic members have undergone.DeMyer (1979) writes of her findings that parents arefar from being aloof and disinterested in the development oftheir autistic child and are deeply affected by the repeatedfailure of their child to master developmental tasks. Inthe many interviews held by DeMyer, she reports findingscattered comments about feelings of guilt, anger, sadnessand nervousness. She noticed "a general diminution of joy"(p. 150) in these families. The effects on mothers wasfound to be more direct than on fathers. The chief job ofmost mothers was mothering. The Persistent failures oftheir autistic child weighed heavily on their self esteemespecially as they by in large had few outlets outside thehome. She is careful however to note that fathers were alsotouched deeply by their autistic child.The literature dealing with the effects of childhooddisability on the family has focused primarily upon thepresence of a chronically ill child (Knafl & Deatrick,1987), or the presence of a disabled child, (Kazak &Wilcox, 1984). This literature has provided conflicting andconfusing results (Knafl & Deatrick, 1987; Powell & Ogle,1985).21Raising a disabled child can be both a positiveexperience as well as a painful experience. Most authorsdeal with the emotional pain of parents as they strugglewith their role (Bristol & Schopler, 1983; DeMyer, 1979;Featherstone, 1982; Gath, 1978). Various authors (Gath,1985; Grossman, 1972; Powell & Ogle, 1985; Seligman &Darling, 1989) discuss a variety of effects on the family ofraising a disabled child. Seligman and Darling refer to"chronic sorrow" as being a normal reaction to having ahandicapped child in the family. Central to this experienceis a grieving process (Gath, 1985) or the Kubler-Ross (1970)stages of grief. Feelings of sadness, disappointment,hopelessness, anger, anxiety and guilt result due to ametaphorical loss of the child rather than a literal loss(Jackson, cited in Gold, 1990; Moses, 1982).These feelings may be projected onto others such asanger directed toward the spouse, professionals, self, orlife. Feelings of guilt may arise out of fantasies ofescape or because of real or imagined contributions to thecause of the disability of the child. Guilt also may resultfrom having to place the child in a group home (DeMyer,1979). It is suggested these stages may be passed througheither rapidly or slowly. They may be cyclical recurringwhen the condition of the child worsens or when a normalmilestone within the family life cycle is not reached such22as entering school, or obtaining a job. The Kubler-Rossstages of shock, denial, bargaining, anger, depression, andacceptance are amplified in the writings of parents andsiblings of children with significant handicaps, includingautism (Featherstone, 1982; Kaufman, 1976; Moses, 1982;Hart, 1989)The classic monograph by Farber (cited in Kazak, 1986)describes family reactions to the birth of a severelymentally retarded child. Farber terms the birth of ahandicapped child a point of "arrested family development"with sequelae that continue to affect the entire familysystem. Waisbren (cited in Kazak, 1986) finds parents ofhandicapped children as having more feelings of uncertainty,helplessness, anger, and rejection than parents of non-handicapped children.For many families with a handicapped child there is arelentless burden of care which lasts for most hours of theday, seven days a week, for many years (Sullivan, 1979).Along with possible financial strains the family can run therisk of being physically and psychologically drained(Seligman & Darling 1989).Kazak and Wilcox (1984) found social networks infamilies with handicapped children to be significantlydifferent from those of comparison group families. Theystudied 56 families with children having Spina Bifida and23matched them with 53 families with normal children. Theirresults show social networks to be smaller for parents ofhandicapped children than for parents of non-handicappedchildren. Extended family network size was found to besimilar for the two groups. Given the degree to which thesefamilies may need to devote themselves to the care of thehandicapped child this adaptation may be understandable.Kazak and Wilcox further noted that members of the socialsupport networks for the Spina Bifida parents were morelikely to know and interact with one another than was thecase for the comparison families. This higher networkdensity may foster a sense of closeness and cohesiveness.On the other hand Kazak and Wilcox suggest that the higherdensity could indicate an enmeshed network thus inhibitingopportunities for new and open discussion of possiblesolutions.One further finding was that mothers of handicappedchildren do not have the same reciprocal relationships as domothers of non-handicapped children (Kazak & Wilcox, 1984).These mothers are not as free to call upon or to be calledupon by others as their counterparts. These tendencies canlead to feelings of isolation (DeMyer, 1979; Featherstone,1982; Sullivan 1979).There is a stigma attached to those who are perceivedas different according to Margolis and Rungta (1986).24Whenever a group is singled out for special attention, theytypically are experiencing some kind of discrimination insociety. Margolis and Rungta claim this population alwayshas issues of "identity (self-concept), self-esteem, a needfor validation of personal experience, and a need forempowerment" (p. 643). She develops this further by statingthat members of special populations suffer from lack ofpersonal identity because they are so often responded tobecause of their group membership rather than because oftheir personal being (Servoss, 1983). Handicapped childrenand their families certainly fall into this special groupcategory.Seligman and Darling (1989) state that "to the extentthat individuals deviate from the societal norm of physicaland mental perfection, they are likely to be shunned,ridiculed, avoided, and or ostracized" (p. 89). Seemingly,associations between the stigmatized and the normal nevermove beyond a superficial level and often those who dointeract more closely with the families of the stigmatizedare given a "courtesy stigma" (Goffman, cited in Seligman &Darling, 1989) resulting in their suffering reactions ofrejection and avoidance Such reactions would account forthe feelings of isolation and loneliness noted by thesefamily members (Seligman & Darling, 1989). Only insituations where there is extensive and intimate contact do25normal subjects see the physically disabled as fairlysimilar to the able bodied (Servoss, 1983).According to Cirillo and Sorrentino (1986) the presenceof a handicap provides powerful information around which afamily is compelled to change. They point out three areasof family structure which may be affected by the birth of ahandicapped child: the equality of the spousal system indecision making; the dependency of the offspring for aprolonged period of time; and the tendency toward nuclearitywhich excludes the extended family from daily matters.Somehow the role, expectations, and status of family membersmust be maintained.The "psychosomatic family" profile decribed byMinuchin, Rosman, and Baker (1978) is well known by thoseworking in the field of family therapy. They arecharacterized by being enmeshed (extreme involvement), overprotective, rigid, having poor conflict resolution, andtriangulation of the patient in family conflicts. Thesefamily patterns are thought to play a role in theexacerbation of certain diseases, for example diabetes andasthma. These family patterns are closely related to theinternalization of psychological style in the individual.Marital satisfaction is another topic which has beenstudied resulting in conflicting information. Fewell (1986)cites an earlier study by Fewell, Bellmonte, and Ahlersmeyer26wherein 80 mothers of children with Down syndrome indicatethat their spouse was the most important of 19 possiblesupport persons.Fewell and Vadosy (1986) report similar findings ofdeaf-blind children who were surveyed. Gath (1978) studied30 parents of children with Down syndrome and matched themwith 30 parents of normal children. In the five year periodmarked differences in quality of marital relationship werenoted between these two groups of parents. Nine of thefamilies with Down syndrome children were found to havesevere marital disharmony while none was found in thecontrol group. On the other hand positive measures ofmarital harmony were higher in families of children withDown syndrome. It seems possible that reactions are moreintensified if there is a child with special needs presentin the family.According to Seligman and Darling (1989) the conclusionthat can be drawn from the literature is that maritaldysfunction among families with a disabled child may haveoccurred even without the presence of a disabled child. Itis felt that the coping styles of a family remain relativelyconsistent. Patterson (1988) cites Zucman as stating "thechild's illness is not the 'provocateur' of familydifficulty but the 'revealer' of it" (p. 69). If a family iscoping poorly with a handicapped child then the family most27likely was having difficulty coping prior to the presence ofthe handicap. The critical incident of the presence of amedical disorder exacerbates unfinished business of a familyover issues that were present previously but perhaps werenot having to be dealt with in a day-to-day fashion.Conversely positive coping styles most likely are indicatorsof previous coping styles which were working and now areenhanced and developed further by the presence of ahandicap.Knafl and Deatrick (1987) present and compare two majorapproaches taken in the literature on how families respondto the chronic illness or disability of a family member.They assert that the studies are predicated on differentunderlying assumptions regarding the nature of the illnessexperience and the reaction to it by the family. Thesediffering assumptions result in a confusing and overwhelmingbody of knowledge which is all but impossible to interpret.One body of knowledge is based on the assumption that havinga disabled member is an inherently negative experience anddisruption to the family is an inevitable consequence(Voysey, cited in Knafl & Deatrick, 1987).The second body of knowledge focuses upon trying tounderstand the subjective definition of the situation by thefamily and how the family manages the illness or disability.Investigators who focus upon an objective meanings of the28illness or disability tend to conceptualize the response ofthe family as passive and efforts are made to measureoutcome. Investigators who focus upon the subjectivemeaning of the situation by the family conceptualize theresponse of the family as active and design research toaddress the processes of adapting to a child with chronicillness or disability. Results from the first body ofknowledge have alerted practitioners to those families atrisk and to the kinds of services which might be of help.The second body of knowledge has aided in understanding howfamilies actively define, manage, and cope, and has aided inshaping the more specific role and content of services.It has been suggested that children from larger sizedfamilies are better adjusted than those from small families(Taylor, 1974). It is thought that the nonhandicappedchildren from two child families carry the burden of all thehopes and expectations of the parents. In larger familiesthese expectations can be fulfilled by several children.McHale, Simeonsson, and Sloan (1984) agree that childrenfrom larger families are more well adjusted, provided thatthe families have adequate financial resources.The socioeconomic status of the family can also affectthe responses of the sibling to a handicap. Siblings frommiddle class families were found to have a range of positiveand negative feelings that were predictable from the29attitudes of their parents (Grossman, 1972). Middle classfamilies often have difficulty in realistically adjustingtheir high expectations of their handicapped child (McHaleet al., 1984). However, middle class families tend to bemore financial secure and better prepared to utilize outsideservices such as camps or respite care. Conversely familieswith a lower socioeconomic status often have limited funds.Thus siblings, especially females, who are from poorerfamilies may be burdened with extra care-giving responsesthat cannot be given through outside channels.Parental attitudes toward the handicapped child areoften be a powerful influence on the adjustment of thesibling Grossman (1972). Results suggest that siblings aremore well adjusted when their parents are more accepting ofthe condition of the child ( McHale et al., 1984).Gallagher & Powell (1986) have suggested that religiousbeliefs most likely play a part in this attitude formationthough recent research on this matter was not found.Siblings Relationships between sisters and brothers are amongthe most rich and enduring in our human experience (Lobato,1990). According to Lobato, there is a belief that childrendevelop best in the company of other children. Lobatofurther states that "one of the most powerful influencesthat siblings have on one another is their ability to affect30each other's relationships with other people. This appliesnot only to their parents, but to other adults and childrenoutside of the family as well" (p. 6).Siblings act as teachers and translators of the theirculture. Siblings relate to one another on everything fromdating protocol, peer relationships, fashion, to how tohandle Mom and Dad. Lobato states that an "uninhibitedintense expression of the full range of human emotion fromlove, affection, and loyalty to hatred, hostility, andresentment" are characteristically expressed amongst andbetween brothers and sisters (p. 13) .There has emerged one empirical study dealing with theexperience of family members with an autistic brother (Gold,1990). Her findings were as follows:1. Parents of boys with autism were found to be moredepressed, though not clinically depressed thanparents in other families.2. Siblings of boys with autism tended to be moredepressed than other siblings and those 12 years andolder tended to show more signs of clinicaldepression.3. Parents of boys with autism had more socialadjustment difficulties than did other parents.314. There were no differences between social adjustmentof siblings of boys with autism and other siblingsin general.Other than this study, the experience of siblings of achild with autism has only been examined in two anecdotalarticles (DeMyer, 1979; Sullivan, 1979). We know nothingabout what takes places on a day to day basis in the livesof these siblings.The research on siblings of handicapped children isinconclusive and sometimes contradictory, (McKeaver, 1983;Grossman, 1972; Lobato, 1990). The well known study byGrossman of college-age siblings of children with mentalretardation found that almost one half of the young adultsfelt they had benefited overall from their family experiencewhile an equal percentage felt they had been harmed. Itshould be emphasized that each group experienced a fullrange of emotions at one time or another but the overalltone of the experience was viewed differently. One can onlyassume that the determining factor is not the presence orabsence of a handicapped child but rather a multitude offactors which include family demographics, personal andcommunity resources which are available as well as thepresence or absence of other stressful indicators. Lobato(1990) states unequivocally:32In general, review of the carefully controlledstudies indicates that a child's disability orillness is not likely to have a negative effect onhis or her sibling's self-concept, self-esteem,social competence or behavioral adjustment. Theresimply is no uniform or direct relationship betweena child's illness or disability and his or herbrothers' and sisters' psychological adjustment.(p. 42)Conversely, others (Breslau, 1982; Gath, 1972) haveindicated that siblings may be influenced negatively byhaving a handicapped brother or sister. Cleveland andMiller (1977) point out that there is a real hazard for anonly female sibling of a retarded child. She may feel theconflict between fulfilling the role of vicarious parentalexpectations while also experiencing parent surrogateresponsibilities attached to her female role. This dynamichas a push-pull effect causing stress to the female sibling.Several authors (Cleveland & Miller; 1977, Gath 1974; McHaleet al. 1984) have found that older sisters in particularwere most prone to psychiatric disturbances, problems withpeer relationships, and unpopularity. This is seen asrelating to an increase in responsibility rested upon oldersisters in helping out with high levels of family demands.This was most apparent in two-child families. Breslau also33supports the notion that older female siblings are atgreater psychological risk than are younger sisters or boysin general. There appears to be an interaction effect ofage and birth order with younger male siblings also at risk.The type of disability does not seem to be a crucialfactor in the adjustment of the brother or sister unless thefamily has a high income and the handicap of the sibling isambiguous or undefined (McHale et Al. 1984). On the otherhand severity of handicap does seem to adversely affect theadjustment of the siblings (Grossman, 1972, Kirk & Bateman,cited in Gallagher & Powell, 1986).Siblings of the handicapped have more difficulties thantheir counterparts in families without handicapped members(Schilling, Schinke, & Kirkham, 1988) yet there is ascarcity of research in this area. Patterson (1988) drawsour attention to several issues relating to siblings of thedisabled and chronically ill. Reactions vary depending onthe developmental stage of the child, gender, and how theparents are coping. Possible issues result from lack oftime spent with the nonhandicapped child due to the factthat the parents are trying to fulfill the many needs of thehandicapped child. Perhaps too there is an unspokenexpectation that the nonhandicapped child will compensatefor all that the handicapped child cannot achieve resultingin undue pressure regarding school performance, social34relationships and athletic activities. Siblings are oftengiven extra responsibilities in caring for their handicappedbrother or sister or extra responsibilities around the home.Tritt and Esses (1988) report that their research hasfound siblings of chronically ill children to have morebehavior problems than controls. Further, it isilluminating to note the wide degree of difference betweensiblings as exemplified by answers to the final question oftheir study. This question asked the brothers and sisterswhat advice they had to give to children who had just foundout that their sibling had a chronic illness. Examples ofresponses were: "cautions about being prepared for feelingsof exclusion; warnings that the ill child should not beallowed to take advantage of being sick; the need to be moreresponsible and considerate of parents and the ill child;and assurances that the first year following diagnosis wasthe hardest" (p. 271).The experiences of siblings must be acknowledged,respected and honored in order for them to participate asfully contributing members of their family unit and thenceas integrated members of a broader social network orcommunity. Their feelings with regards to their handicappedbrother or sister may well be strong and vary along a widecontinuum. However strong feelings do not necessarilyresult in pathological adjustment. "Though particular35sibling groups tend toward one emotional tone or the other,experiences of both positive and negative feelings andbehaviors are a guaranteed reality of all siblingrelationships" (Lobato, 1990, P. 13).Family members together create and define roles andbehavior patterns for one another. There is a reciprocalinfluence which family members effect on one another. Allfamily members need and deserve recognition and validationas individuals who are separate and connected to one anotheras human beings. Siblings of children with autism are nomore or less special than other members of their families.They are equally caught in the interplay amongst familymembers struggling to fulfill and respond to the needsexhibited both from within and without the family system.Their stories have not yet been told in such a way that theymay have an equal voice. In order to better serve thefamilies of autistic children all members of the familysystem and the full range of their experiences, feelings andperceptions must be acknowledged and understood.Qualitative Research The phenomena studied in qualitative research arelargely internal processes such as perceptions and feelings.The focus is on how events are perceived by the individual.The researcher is often in direct contact with thoseinvolved in the study (Borg & Gall, 1989). The purpose of36this research is first to understand and then communicatethe understanding of what it is like to grow up with asibling who has autism. Qualitative methods help usunderstand what others are experiencing and see theindividual in a context rather than as an isolated variable(Fewell & Vadasy, 1986).Case Study"A case study is an empirical study that investigates acontemporary phenomenon within its real-life context; whenthe boundaries between phenomenon and context are notclearly evident; and in which multiple sources of evidenceare used." (Yin, 1989, p. 23.)It is hoped that the information and knowledge gainedthrough this study will be helpful in assistingprofessionals and family members to support siblings ofchildren with autism. It is further hoped that thisresearch will add to the information in the literaturedealing with autism and various aspects of living withautismYin (1989) outlines and addresses three criticismsgenerally levied at case study methodology. The first isthat case studies can lack rigor and are prone to bias.These tendencies are not however applicable only to casestudies. They are found in more quantitative andexperimental forms of research. The second criticism is37that the case study offers little basis for generalization.Yin notes that the aim of the case study is theoreticalpropositions and not to populations. The third criticism isthat case studies can lead to rather complex, tedious,reports. This later characteristic is dependent upon theabilities and talents of the researcher to glean out theessential patterns or findings.38Chapter III. MethodologyThis chapter details the methodology and proceduresemployed in conducting this study. The first sectiondetails my personal perspectives and their significance tothe research carried out. The next section outlines ageneral overview of the basic design of this study. Next isa section on procedures, specifically selection ofparticipants, the interview process, the analysis process,and the presentation of the results. Finally the chapterends with the issues of reliability and validity and howthese pertain to this qualitative study.Personal Perspective A basic tenet for qualitative research, is that theresearcher is the major research instrument (Spradley 1979).Oakley (cited in Mishler, 1986) believes that the concept of"researcher and the researched as objective instruments ofdata production be replaced by the recognition that personalinvolvement is more than dangerous bias -- it is thecondition under which people come to know each other and toadmit others into their lives." (pg. 31.) Therefore it isrelevant to describe the personal context and perspectivewhich I bring to this endeavor.I was born without vision into a family where none hadever personally experienced any disabilities either throughbirth defect, illness, or accident. At an early age,through surgical intervention, I was given a limited amount39of vision which has remained relatively constant throughoutmy life by means of both medical and surgical support. I amthe youngest of two daughters. Hindsight and maturity allowme to now realize the diversity and strength of the copingabilities of my family which I believe were of significantassistance in dealing with my handicap.I attended a special school for children who were blindor deaf until grade eight at which time I was placed into aregular high school. That was before the concept ofintegration of special needs children into the regularschool system, so many battles were fought and resourceswere found in unconventional ways, mostly through thestrength and perseverance of my family. My specialnessnever really occurred to me at the time. I was oblivious tothe extra time, support, and sacrifices required by everymember of my family in order to enable me to participate onan equivalent basis with my peers. At the time, I was onlyaware of the extreme effort I was making in order to keepup.I chose a career as a special education teacher workingwith children having learning and behavior disorders. Anintegral part of my role was to find ways to support thesefamilies who suffered from the significant stresses due tolack of resources, lack of positive successful experiences,lack of support and understanding from others. As I worked40with these families, a personal awareness of my ownfortunate circumstances and the special support I receivedfrom my family emerged. Until this time I had beenconscious only of the fact that the special needs child hadto put in a concerted effort towards their own progress.Now I came to realize that this kind of effort was morepossible if each member of the family was feeling personallysuccessful and was sharing somewhat in supporting the samemutual goals.More recently, I have worked as a consultant tofamilies with special needs children. Once again I foundmyself very aware of the impact of the special needs of onemember of the family upon each family member. Thesefamilies dealt with the normal day-to-day realities andissues that all families face. However they often also hadthe added concern of handling unusual aspects thedevelopment of their special needs child; be it schooling,socialization, medical care, or family adaptation.Emotional and practical support was needed by each familymember in order to help them achieve as normal an existenceas possible. The healing and encouraging elements of joy,pride and humor were enjoyed only by the very strong andwell supported.On a more personal note, although my sister and I havealways been close, we have also experienced times when we41have felt worlds apart. She has always been outgoing and aparticipant in many activities that were beyond mycapabilities and therefore a part of my dreams andfantasies. There were times when it was her life I wantedto lead and not mine. She also experienced an assortment offeelings and reactions with respect to our relationshipincluding; love, resentment, guilt, and an extreme sense ofresponsibility. Although these are emotions that mostsiblings would normally experience, the fact of my handicapmost likely modified and perhaps even intensified theseemotions. As an adult I came to realize that perhaps someof her needs with regards to myself had not beenacknowledged or fulfilled.I am fortunate that my sister and my family had thestrength to develop positive coping skills and that we havemaintained a warm open relationship. This connectednessprovided the glue and energy to guide us in times ofstruggle and in times of intense anxiety when having to copewith our own special family issues.Through many frank discussions and much personalgroping, my sister and I have explored our experiences andour relationship has now matured to become more sharingwhile at the same time we differ in our individual ways.For us this differentiation has been a process with which wehave struggled and benefited greatly. Today we enjoy a42sense of freedom and connection suited to our personalstyles.I have developed an understanding and appreciation forthe splendid efforts my family and friends have contributedtowards my living a fulfilling life. I bring to this studyan awareness and knowledge that not all families whoexperience such significant challenges fare so well. Ibring also to this study a desire to help bring to thebrothers and sisters of children with difficulties awarenessand appreciation of their roles, their specialness, theirindividual coping styles and their contributions. Thesespecial family members by in large have prolongedrelationships with their siblings. Living with ahandicapped brother or sister inevitably has an impact asdoes any other significant experience. This study focusesupon the experience of non-autistic brothers and sistersliving with an autistic sibling. Their stories deserve tobe heard, understood and shared with others in order that abalance and richness of their experiences can be grasped.Design The design of this study uses field researchmethodology, specifically, the in-depth interview to gatherinformation that describes the range of experiencesencountered by siblings of autistic children. Theinformation gathered in this study was derived from43participants who had experienced living with an autisticsibling. These participants were selected in anopportunistic manner through initial identification by thePacific Association for Autistic Citizens. The dialog orportrait gathered through these interviews was analyzed andevaluated using the principles of reflexivity, a continualprocess of feedback and evaluation, and triangulation bycomparison between participants, the literature, and myprior experience with families of handicapped children.From this information, a series of general issues describingthe range of experiences of the siblings of autisticchildren was presented.Procedures Selection of Participants The primary participants in this study are subjects whohave experienced living with autistic siblings and wereselected in an opportunistic manner (Burgess, cited inSwain, 1990) through initial identification by the PacificAssociation for Autistic Citizens. The criterion forselecting participants required that they be a minimum ageof twelve years and have a minimum of five years directexperience in living in a family with an autistic sibling.It was also preferred that the families not have experienceda recent major family trauma such as divorce, death, or44separation. It was also desired that each family be anintact, two-parent family.In addition to these primary participants, familymembers who may have special knowledge or be able to providefurther insights into the experiences of the primaryparticipants were included in the study. Information fromthese secondary participants was used to provide a contextfor the interviews conducted with the primary participants.They also served as a source of convergent informationproviding a validity check on the information gained fromthe primary participants. Obviously, the willingness of thefamilies to participate was an important factor in theselection process.In-Depth InterviewField research is a complex, non-programmed,interactive process that involves the researcher and allparticipants in the study with the research problem.Lofland (cited in Mishler, 1986) describes the unstructuredinterview as a "flexible strategy of discovery ... Itsobject is to carry on a guided conversation and to elicitrich, detailed materials that can be used in qualitativeanalysis." (pg. 27) 	 The in-depth interview, which formsthe major tool of this research, is a dialog between theresearcher and the participants wherein the researcher mayformulate and test hypotheses throughout the process.45Mischler conceptualizes interviews as "jointly produceddiscourses" (p. 96). One of the principles of this researchdesign is reflexivity, a continual process of analysis andreview throughout the research project. The flexibility ofthis research approach is especially appropriate becausethis research question is concerned with the discovery ofthe range and nature of the experiences of the siblings ofautistic children.Acknowledging that the specific interview procedures,dialog, and analysis relative to individual participantsevolve according to the principles of reflexivity as theresearch progresses, the interviews followed a broad generaloutline in order to maintain a commonalty between theinterviews (Spradley, 1979). A preliminary interview wasconducted involving the parents to provide an overallcontext and perspective to the family dynamics and the rangeof experiences of the siblings of the autistic child. Theinclusion of the parents was also aimed at forming anoverall feeling of trust between myself and each member ofthe family unit. The inclusion of the parents was alsoexpected to provide convergent data for later analysis. Thepreliminary interview were immediately followed by an in-depth interview with the corresponding primary participant,the sibling.46An important first step to this interview was toestablish rapport with the primary participant. Thisrapport was a necessary prerequisite in maximizing thequality of the research and allowing more creative dialog.Through the interview, the participants were invited todescribe the experience of growing up with an autisticbrother or sister. Together we examined the experience offamily life of the sibling. The participants acted as myguides and teachers regarding their experiences. Broadareas of interest were social support, family communication,and access to information. This was a search for themeanings expressed about the experiences by siblings of afamily member with autism.As the objective of these interviews was to gather asmuch information about the experiences of the participant aspossible, questions were largely open-ended, although somequestions were directed to probe for clarification or toobtain completeness of information. Example questionsincluded:Describe some early memories of when you firstnoticed that your brother/sister, was different.Describe a day in your life, so that I can see howyour brother/sister influences the way that lifegoes on.47- Describe some of the behaviors of yourbrother/sister you have found difficult? Whathappens in your family when this occurs? How do youfeel when this happens?- What do you think you can not do because yourbrother/sister is autistic.- Describe what you have learned by living with abrother/sister with autism.- How would things be different if your brother/sisterwere not autistic?The extent and duration of these in-depth interviewsvaried as to the specific circumstances of each of theparticipants, such as; the nature of the experiences, thelevel of rapport established between the researcher and theparticipant, and the ability of the participant to expressthe experiences. In general, a timetable of one hour withthe parents and up to three hours of interview time with theprimary participant was established. The three hoursallocated for the interviews with the primary participantsallowed for approximately two hours for a first interviewand up to one hour for the follow-up interview.Each interview was audio-taped. The audio tapes of theinterviews were transcribed and the tapes erased to ensureconfidentiality for the participants of this study.4 8Analysis A portrait description based on each of the interviewswas prepared. This portrait discusses the perceptions ofliving with an autistic brother or sister. According to theprinciples of reflexivity, these portraits were thenvalidated with the participants in a follow-up interviewwith the objective of also further clarifying and enrichingthe portrait.The portraits and the underlying interviews wereanalyzed and studied in detail in order to develop a list ofcommon issues and topic areas. The experiences of theparticipants of this study are discussed in the context ofthis list of issues.Results From the list of common issues, themes, and generaltopic areas, a description was developed which reflects thebest understanding of the information gained from thisstudy. It is hoped that this description providesinformation and knowledge that will be helpful in assistingprofessionals and family members to support siblings ofchildren with autism. It is further hoped that thisresearch will add to the information in the literaturedealing with autism and various aspects of living withautism.49Reliability and Validity Issues The major issues or tests that confront any study ofthis nature are those of reliability and validity. Yin(1989) explains the specific case study tests that areappropriate for dealing with a qualitative study such as:construct validity, internal validity, external validity,and reliability. Yin further details a number of tactics tobe employed throughout the conduct of the case study to dealwith these tests.Construct Validity Construct validity deals with the soundness of theresults of the study through the establishment of correctoperational measures for the concepts being studied. Yin(1984) has identified three tactics to manage this issue.The first tactic is the use of multiple sources ofevidence in a manner encouraging convergent lines ofinquiry. This was dealt with in this study throughtriangulation by comparison between subjects, theliterature, parents of the siblings, and my prior experiencewith families of handicapped children.The second tactic involves establishing a chain ofevidence that clearly links the individual case portraitsand the general discussion to the specific experiences ofthe participants. This was managed through careful crossreferencing of the individual interview data.50Finally, the third tactic is reviewing the narrativeswith the participants to further validate the results. Thisformed an integral part of the procedures of this study.Internal Validity Internal validity is only relevant to studies thatattempt to establish causal relationships or are explanatoryin nature (Yin, 1989). Therefore, this test is notappropriate for this study since it is descriptive in natureand makes no attempt to explain or establish causalrelationships.External Validity External validity deals with the generalizability ofthe study to a larger population. As this study examinesthe range of experiences of siblings living with autisticchildren, an analytic generalization was developed whichdescribes the results of this study and provides a basis forcomparison for other similar studies leading to a deeperunderstanding of the experiences. This study presents oneaccount of a particular set of experiences. As Yin (1989)indicates, generalization is not automatic. Theories mustbe tested through replication of the findings in othersimilar studies.Reliability The objective of the reliability test is to establishthat, if a later researcher followed exactly the same51procedure and conducted exactly the same study, the laterstudy would produce the same results and conclusions as thecurrent study. As the personal experience of the researcherand the individual nature of the participants are such animportant part of the research process, and because theinterview process is so unstructured, the likelihood of everexactly replicating this study is very low. Here theapproach to dealing with the reliability issue has to be, asYin (1989) states, to conduct the study "as if someone werealways looking over your shoulder" (pg 45). In the absenceof a physical person looking over the shoulder, thisrequires the researcher to explicitly acknowledge theirassumptions, biases, and perspective. Only by completedisclosure of thoughts and process and systematic recordingof the progress of the study in all detail can we achieve ameasure of study reliability.52Chapter IV. Case PortraitsPortrait of Asia. Asia is the eldest daughter in a family with threechildren. She has a 10 year old adopted brother, Tyler,who has autism. Tyler arrived in the family at five daysold. She also has a younger brother age seven named Blair.Asia and Blair are the natural children of their parents.Asia lives with her two parents, a cat and a dog.Asia is attractive, healthy, and sociable. She enjoysthe company of her friends who in turn seek out and enjoyher companionship. She freely brings her friends, both maleand female, into her home where they are welcomed. Acertain amount of privacy is provided along with warmth,friendliness, and cheer. Her mother is on a first namebasis with her friends. Both her brothers are openlygreeted by many of the friends. This home belongs to allfive members and the needs of all five members are observedand negotiated. No one member, including her brother withautism, is allowed to rule supreme although this proves tobe difficult at times. This management of individual timeis a major stress factor to this family.Asia belongs to a very creative family. Her father isa successful, active, versatile musician who both plays andteaches. Her mother is talented in the arts being anaccomplished soloist as well as being involved in manycrafts which require extreme care, perseverance and53creativity. She, like many other parents of children withautism, has been an active advocate for her son as well asan able volunteer for parent organizations working for therecognition and establishment of policies and rights forthose with autism.Asia likes "lots of things". She enjoys the arts,having fun participating in modeling, dance, theater, andmost importantly her church group and choir. "That is oneof the most important things I do. I'd die without thatchoir. It's my world." Her ambition is to be an actress.Her consistent love of the arts is demonstrated by the factthat art class at school is her most favorite subject whileFrench is her most difficult and least liked.Asia remembers little about the early days with herbrother with autism. There are five years between them.She recalls only "that there was something different. Ithink he was able to apeak when he was five months and likeperfectly." She recalls thinking that her mother thoughtthis was "pretty amazing, like, he's a genius". Her youngperception was that her brother was "really smart" and thatone day he would "get a really good job and be one of thosepeople who can tell everybody all the answers. He can helpme." She says this laughingly. This is and was a littlegirl fantasy which she has let go of but nonetheless waspresent and had to be changed.54She does not recall finding out about his autism as anevent. Somehow he just was and that is what she is used to.She remembers little back then with the exception that "hehad a problem". Asia believes her brother became autisticdue to birth trauma. She thinks his head was squeezed toomuch during delivery and some of the brain cells weredamaged as a result. She remembers how pinched his headlooked when he was brand new. Her theory is a no blametheory and this sets the stage for much of how she thinksabout and deals with her brother's handicap and itsimplications.Her memories are blurred. She remembers before Tylercame and quite a long time after. However, the in-betweenmemories are hard to reach. She does recall one incidentwhich still brings up for her troubled feelings, "spooky".While visiting her grandmother one day her brothermysteriously fell off a bed when he was a very few monthsold. She remembers the blood, and her fear as her motherand a friend rush him off to hospital. "I was scared causeI saw all that blood and usually when you see blood yourelate to dying." She is left with feelings that stillhaunt her, "whenever somebody mentions body parts or blood"she feels queasy. This is a powerful memory for Asia andstill needs to be dealt with and resolved so she can moveon.55Asia's recollections grow with age. She was aware thatsomething was "wrong" but "it didn't affect me that much".Yet as she grows older, "things changed". Asia had been anadored only child until her brother arrived and she had toadjust to someone new in the family. However this someonenew also had a problem, "so they kind of paid more attentionto him than me." She recalls feeling very angry witheveryone at this time. Her thoughts are mixed however asshe goes on to say that it did not really affect her thatmuch then because her parents still paid a lot of attentionto her. Her memories revolve around feelings of unstatedconcern regarding her brother. "everybody was not talkingabout him not being right, but showing it or something."Her brother is difficult to handle and she wasrecruited as a helper, (as a third adult) according to herparents. She remembers being treated like an adult andfeeling very angry. She also recalls the time when herparents made the decision to no longer use her as a thirdadult. This turning point was met with relief."It affects me more now I think", says Asia. Asia hasfeelings that are diverse and some of them are painful. "MyMom's not here for all her meetings a lot of times. Justhaving to explain to everyone of my friends when they walkin what problem he has. Just ... sometimes I getembarrassed. .... it's because he runs around and he's56different and some people don't understand and it gets meembarrassed. But then I realize that he can't help it."Asia has ambivalent thoughts and feelings. She waversbetween understanding acceptance and feelings ofembarrassment and impatience and guilt.Asia gives herself permission to feel sad and angryabout her loss. In these moments Asia imagines having abrother she can talk to, a brother who would understand.She is developing her individuality and strives to shareand explore her feelings and experiences with those close toher. These relationships teach her about herself andothers. Her brother's lack of understanding is a barrierbetween them. His inability to relate is both painful andfrustrating. This is clearly portrayed when she says; "It'salso harder because he's older now and he knows a lot morestuff. He just, like, now he bothers me more, like, he'llrun downstairs and he'll get into my things and just reallybugs me. I don't think I've had one thing that he hasn'treally touched and tried to break and it just really bothersme that he does that stuff and sometimes I just sit thereand I'll think about what would be if he was normal? Howdifferent it would be, like to have a normal brother. Icould talk to him about a lot of things if he was .... He's10 right, and usually 10 year olds understand a lot ofthings and I mean I have to talk to .... my 7 year old57brother and he doesn't understand really. But he would, hewould if he was normal and that's hard." She comments,"lots of people say it'd be cool to live with a brother likethat and it's not. You know once you've lived with them andthen you want to switch back because you just want somebodywho, that, you know, will understand."In terms of her everyday life Asia feels trapped andstifled. She says they really can not go away on vacationsor trips. "It's really hard because we can't go anywherereally in the summer without somebody having to arrangeeverything; without somebody having to take care of him anda lot of times there's nobody there." Therefore the familysimply stays at home. Respite was available for one weekthis past summer which they used.Asia, however, celebrated the good fortune of beinginvited to go away with a friend to California for threeweeks last summer. Her lucky break is remembered fondly andwith excitement and appreciation. She returns to the themeof frustration saying that the lack of freedom also appliesto weekends. "It's really hard and we just don't get to goaway or anything 	  Our weekends are always screwed upand I always have to baby-sit and that means that my timealways gets screwed up and I don't get to do a lot of thingscause my parents need a break too. I just want to leave.... I just want to go and be with my friends 	58Asia wavers between two polarities. She is aware ofthe need for time out for her parents and is willing to helpprovide them with some relief. She has a good sense of howto deal with Tyler and feels confident in herself and herabilities. She longs for the freedom to be able to offerher support as a contribution rather than feel it is arequirement. There is the pull for independence and freedomwhich drives her to want to just get out from under it all.These opposing poles are not resolved. They are lived withand dealt with according to which is pulling the hardest atthe time.The reality of the behaviour of her brother causes Asiato note the differences and contrasts in her life to thoseof others. All doors are locked including the fridge.Nothing can be accomplished without an ordeal. "It'smaddening cause every time you want to go somewhere or dosomething you just can't open up the door you have to go runand get a key. If you're in a hurry and I mean that takes acouple minutes to go run get the key, run upstairs, open upthe door, get something, lock the door, run downstairs andput it back again. Then the next time you have to do thesame thing you know. It's maddening."Nothing is sacred. He breaks or at least takeseverything. "people usually do have personal things thatthey can have that are personal that nobody's going to59touch. That's theirs and nobody will go near. .... Yeah andthat's very upsetting because when you don't have anythingthat's really personal you kind of feel empty." Asia isdesperate for something to call her own be is space, time ortreasures.It is not always easy to handle Tyler and his behaviourthe way she is supposed to. The family is working on abehaviour modification program that calls for specificbehavioural consequences for his aggressive and hurtfulbehaviours. "He also, like, hurts a lot more than probablya normal one would and it makes you nuts sometimes .... Yesphysically". "He hurts .... "he can't express himself acertain way. That's the only way he can express himself."He gets "negative attention" instead of "positive attention"by hurting her and her youngest brother. Dealing with thesesituations on a daily basis takes a long term toll on AsiaShe does not like being hurt. She feels angry with him butis not allowed to show it. Asia does not always have thenecessary control over her own emotions. Occasionally shereacts showing some display of emotion which is just thereward Tyler is trying to get.	 "My life would probably betotally different without him here. I mean all of us wouldprobably be less frustrated and it would be a lot smootherand we wouldn't get angry as much". A lot of pent up angerspills out from each of them in other little incidents.60"He'll bite himself and it looks so stupid and you justwant to tell him not to, and he can't. You can't stop himand it's really frustrating to like pull him away fromthat." There is a sense of dilemma as she struggles withthe futility and necessity of preventing her brother fromdoing harm to himself or his surroundings.Her utter lack of control over the situation iscompounded when she does take what few steps are availableto her and her motives are misunderstood by her father."and it's really frustrating .... , when he, (Tyler) doessomething to you, not to be able to do something back causeyou just want to, but you can't. You know you just end upputting him in his room and then it's awful frustrating whenmy Dad thinks that I can't handle it but, like, I know howto do it .... I just want to do it. I just want to be ableto discipline him." Parent interference is frustrating forAsia. Her anger, and resentment are founded in her desireto become more independent, handling situations which sheperceives as her own affair.The presence of her brother with autism has taught herabout a part of life which is hidden from many people. "Iknow so much and without having him as a brother I wouldn'tknow about anything and I just would probably make fun ofthose people, just as people do." The view Asia has of herworld and the part her brother has in it has been honed and61mirrored through the varied reactions of her friends and thepublic. She has felt understanding, compassion, andacceptance as well as rejection, fear, awe, andembarrassment. "you know my other friends understand himand they always say "hi" and they know, like, who he is andstuff."Asia has witnessed many and wide variations of reactiontowards her brother. She has experienced the initialanxiety felt by many when first meeting her brother. Shefeels relief and understanding when this anxiety can meltinto acceptance. On the other hand she has felt themisunderstanding and hurt when this anxiety remains andbecomes rejection.	 She says, "I mean I live with him andif they don't like him then that's their problem becausethis is his house too." She remembers a friend coming overand not being able to tolerate her brother and telling himto go away. Her mother stepped in to remind the friend,"this is his house too and if you don't like it that's yourproblem." Although this family rule has been adopted andincorporated into her world view, the memory and occurrenceof such incidents are uncomfortable and embarrassing.Asia recalls excruciatingly embarrassing moments whenher brother is running around, screaming and touchinganything in sight. She hates these scenes and hates havingto chase after him. "I tell my Mom I'm not going to chase62him because I just can't. You know you're running aroundthe store chasing this little kid whose doing everything andit's just really embarrassing." Her dignity is shattered atthese times as she too clearly imagines the thoughts ofothers.In addition, her turmoil has elements of alarm for thesafety of her brother, "He'll run outside and that's what Iworry about more. He'll escape and we can't find him." Sheis profoundly aware of his utter dependence on their careand management. Part of her inner struggle is a criticalawareness and belief that, "He's a person just like you andme. He just has a problem and it's not his fault. It's notlike he chose to have that problem." Back and forth heremotions wander, the pain, the embarrassment and the caring,the concern.Asia can and does speak openly to others about herbrother. She made a class presentation including a video onautism, explaining some of the behaviours of her brother aswell as what is known about the condition. She remembersasking for the respect of the class as she requested thatthey not laugh as her presentation was about her brother.Asia was moved and honored by the respect and understandingof her classmates exemplified by receiving both high gradeshanded out by her peers along with comments spoken andwritten recognizing the reality of her brother's handicap.63The manner in which Asia handled this experiencedemonstrates her courage in being able to openly discuss herbrother and clearly define her terms in so doing.A further strength of Asia is her ability to allow thelaughter of her friends to penetrate and lighten some of theheaviness surrounding the condition of her brother. Thehumor of her friends helps soothe some of the embarrassment,frustration and isolation that are part of everyday lifewith her brother and the consequences of his handicap.The hardest part for Asia is the behaviour of herbrother, "just that he is different and he'll always be likethat. Like it won't change." She knows how difficult hislife will be. As a teen she is now able to speculate andher speculations lead her to the conclusion that "it's goingto be hard because a lot of people just feel .... stay awayfrom him .... because he's different." Asia differentiatesbetween the world out there and their world at home. Shehas experienced the antagonism and ignorant judgement ofstrangers and it makes her angry as well as deeply sad. Sheknows the community is not as understanding as their home.Asia recalls incidents when people have said that herbrother should not be allowed in public. Asia's angryresponse has been that those who cannot understand someonewith a difference should not go out in public.64At times Asia feels she receives the brunt of thefamily strain. There are days when she feels that hermother seems to be having a particularly bad day "and he'llbe doing stuff and then I'll do one thing, just one littlething and she'll get mad at me." 	 In times like these Asiatalks to her friends. She selects which friends she talksto about issues dealing with her family. Her church groupis like a safe extended family wherein she can "be yourself	  I love my church group. It's fun. I can talk tothem 	  I trust a lot of people there. I know that if I tellthem something they won't tell because a lot of things, Iknow that they believe the same thing I do .... they're myfavorite group to be with." This closely knit group is herprivate treasure which she cherishes deeply.She is quick nonetheless to point out how fortunate shefeels to have a mother who is there for her when she has aneed. She knows a friend less fortunate in this respect.It is this friend she turns to when she is feeling downabout how hard her situation sometimes is. Both girls haveaspects of their lives which are hard and which they can dolittle about. These aspects they share together.Asia can and does turn to her parents for understandingand knowledge about autism. According to Asia, "she, (hermother) understands it more .... I could probably talk toboth of them but my mom goes to all the meetings and65understands it more". She goes to her Dad for help withinterests and things she is doing and her mother provides asounding block for some of her problems. Asia seeks outemotional support from her friends and practical supportfrom her parents.Asia is aware of provisions made for the future care ofher brother and the role of her and her youngest brother incaring for him. She acknowledges that aspects of herresponsibility for her brother may "screw up a lot ofthings. If he had a problem that would be myresponsibility. It's scary that I don't know what's goingto happen to him when he's older." Once again she hasaccepted her part saying, "No it doesn't make me angry causeI know that I would and I just have to accept that cause youcan't change it."Asia has learned so far through her experience "to livewith something that's different. Learning to have a problemthat will never go away and you know that for the rest ofyour life they will never change. You know your life willalways be the same. You can't just change it. I mean oncehe hits a certain age it won't go poof you know and it'sgone." Coming from an idealistic youth this soundsdepressing. Asia is not depressed. She has accepted thelesson and believes she will be more able to handledifficulties which will inevitably come her way as they come66for everyone. Her optimistic side shows when she says, "Youalways let yourself shine through no matter what."Asia's advice to other brothers and sisters living witha sibling with autism is to "treat them like they'redifferent from you .... They're not to blame .... You can'tgive them a label like society does .... Everybody isdifferent." Asia believes that everyone one day will have aproblem. Living with and caring for Tyler is the problem inthe life of her and her family and she feels she has learnedto handle it.Portrait of Mark Mark is 15 years old and the eldest son in a familywith two children. His 12 year old sister Karen has autism.Mark is quiet, friendly, and intelligent. His interests arevaried ranging from athletics to music to hands on hobbies.Mark is a capable athlete having played soccer for thepast eight years. He presently participates as a member ofhis high school football team. Mark's friends for the mostpart enjoy athletics and in their spare time they join insuch activities as roller blade hockey and listening tomusic. Mark likes to ski and has been a member of theNancy Green ski club. He is in the school band playingelectric base. Mark also builds model airplanes that areradio controlled and can fly. He likes video games as well.67Mark's current career ambition is to become a dentist.He is good at sciences and has a natural interest indentistry as he has been the recipient of a considerableamount of dental work. He also likes the idea of theearning power of a dentist. Mark is eager for the freedomand independence that money can buy. He presently enjoyshis part time job working at McDonalds.Mark's father is a professional engineer and is adedicated and interested father involving himself in theupbringing of both his son and his daughter . Because theirdaughter, Karen, is unable to dress herself, Mark's fatherplays a very active role in her daily physical care. He isalso active in the development of his son, sharing in thebuilding and flying of model airplanes and joining him forthe occasional day of skiing. "My dad and me will fly theplane together or build it together. We get the time."Mark and his father have a close, easy relationship.Mark's mother is highly informed, involved and presentfor both her children. She has taken on the role of managerand care-taker for her family. She is a talented anddedicated teacher working part time. She spends theremainder of her time running the household and negotiatingon behalf of both her children to ensure that each receivethe benefit of resources and opportunities that areavailable to them. This mother is nurturing, creative and68resourceful and continues to work and fight hard in orderthat each family member can pursue some semblance ofnormalcy and independence. Both parents are highly verbal,intelligent, and openly communicative. Both parents seemto be able to find some time for their individual interests.Mark's mother plays the piano and takes lessons while Mark'sfather loves to participate in sports activities such asskiing and wind surfing whenever possible. This negotiationof free time is no easy matter but in this family has beenestablished as a priority.Mark has few early memories of his sister. "I wasthree, like so I don't remember a thing. ... But she'salways been there so it's just seemed normal for me ....All I can say is I've never really known anything else causeshe's been here all my life. I don't really know what it'slike to have a sister or an older brother whose normal oranything." He recalls noting her difference from otherlittle sisters. Now and then "she'd do certain things butit's nothing important". Mark was very much protected fromthe daily routine of caring for his sister. The family rulewas set at an early stage whereby each member would lead asnormal and independent a life as was conceivable given theircircumstances.Mark paints some lovely cameos of himself, his fatherand his sister sharing some simple pleasures together. He69remembers, "when we were about eight we used to gang up ondad and wrestle with him and that kind of thing." or, "meand my dad we go outside and we'd take her. This would bein the summer and we'd just throw a ball around and we'dthrow it to her and she'd laugh and she'd try to catch itand sometimes it would hit her and sometimes it wouldn't andsometimes she'd drop it and then throw it at us 	  itdoesn't necessarily go directly at you but most of the timeit does." 	 His tone is easy, warm and gentle.Mark is comfortably interested and able to interactwith his sister without having his identity threatened.Mark remembers very little about the early times when hissister was more acting out. She can now be quiet andunobtrusive when there is company and according to Mark"actually none of my friends, it didn't really occur to themthat, sure she is handicapped and they like understood thatbut, really, the way my friends would take it is just ....like she's a baby or something and you just have to watchher the whole time".Mark's social life and his ability and willingness tobring friends home is similar to that of other boys his age.He is not preoccupied with the presence of his sister.Rather at his present age he prefers to go out with hisfriends or meet them outside of his home. Mark has lived inhis neighborhood for most of his life and his friends, both70in and out of the neighborhood, are for the most part longtime associates. The new friends he has met through hiswork and school belong to a new part of his life that ismore independent from his home. In combination with thisgrowing independence Mark maintains some close friendshipsresulting from long term family relationships. In addition,he and his same age cousin are mutually close and they lookforward to visiting one another. Mark's friendships arebased on the mutual ability to talk easily to one another aswell as the ability to share mutual interests such as sportsand music.Mark's direct responsibilities towards his sisterinclude occasional babysitting. "like sure my parents willgo out for brunch and I'll sit there. But every kid hasthat". Included in Mark's duties in order to receive anallowance has been the 20 minute or so routine of watchinghis sister just prior to the dinner hour. To Mark, this isnot an issue, "I think with child care workers and thatstuff it isn't much different I guess .... Sometimes myparents will go out and I want to do something with myfriends but I can't cause I have to watch her. But most ofthe time they let me have a friend over anyways. So itdoesn't really make a difference." Again this seems to fitcomfortably into a family routine as Mark explains that he71simply watches TV with her or looks at one of her books.His sister intrudes little or not at all into his life.Through the years Mark has been able to lend support tohis parents during certain times of stress due to hisability to either interpret the wishes of his sister or atleast gain her co-operation when the efforts of his parentshave failed. His sensitivity has led to some compatibilitybetween the two siblings. Mark is comfortable with her inhis room while he is doing homework as she will be absorbedby his fish and not disturb him. "If I'm doing homework orsomething, I've got a fish tank in my room and she likes myfish and she'll just sit there, sort of mesmerized and justwatch my fish for hours while I can do my homework. And ifyou put on music or something she'll dance. So she reallystays wherever you are."Activities that can be shared are few. Mark and hisDad will take Karen outside and throw the ball around for awhile. "It's just like having a six or seven year old sisterreally. So I have to watch them whether she's handicappedor whatever", says Mark. On a few occasions Mark has gonewith a child-care worker to the pool to watch and assist.His role is a facilitative one. Mark describes watching her"squabble" a bit and then actually "she kicks a bit" and isable to float for a few seconds. He assists with smalltasks like putting on her beach shoes while at the lake or72helping out with other incidental tasks. His manner whiledescribing these events is kind, gentle and sensitivelyamused.He is observant, sensitive, and interested. He seemsto have a special intuitive relationship with his sister.For example, Karen will sometimes not eat at mealtime.Although this does not create a scene in the family, Markhas observed that, " A lot of times she eats best when noone's even at the table or when I'm just sitting therereading something." Mark is a person of few words and hismanner fits the communication style of sister. Mark haslearned some of her signing and is able to understand andcommunicate a few limited messages. 	 His sister is neithera threat to his identity nor a burden in his life. He hasthe freedom to explore a world outside his home while stillmaintaining a connection with his family, their interests,values and standards.Mark is a good student and maintains respectfulbehaviour in class as well as high grades. This is not tosay that Mark is sliding through adolescence without someareas of tension and struggle. He wishes for more freedom,independence, and flexibility from his parents and resentsmany of the restrictions placed upon him regarding school,homework and in-house responsibilities. Suggestions orguidance from his parents with regards to style of homework73or style of behaviour is seen as an intrusion and for themost part is not welcomed. His ambition is, "I'm going tomove out as quick as I can." His adolescent struggle forfreedom from his parents is evident at this juncture.Mark has learned about aspects of autism, epilepsy andsigning by living with his sister. His mother is a specialeducation teacher and therefore his education has beentutored. In terms of his feelings about those other thanhis sister who are different Mark says he does not reallynotice it much. He admits that he might be with those wholaugh at others and although he does not laugh he will notnecessarily speak up either as that leads to othercomplications at the time. "I'll be with people that laughat other people and I won't necessarily laugh myself butI'll be there and then I'll be alone and all that kind ofstuff. It depends on what I'm doing and who I'm with." Afirm stand in this regard has not yet been taken. Such lifedecisions are not yet solidified as he is in transitionbetween childhood and adulthood, between parent values andsetting his own. His attitude is, let well enough alonewhich coincides with his quiet and somewhat shy manner.Mark's theory concerning his sister's autism centersaround the belief that his sister can and does take in muchof what goes on around her. She is impaired, however, inhow she responds to the world. Mark states, "it's like74scrambled .... She can't, I don't know if she can't talk.She tries but, She seems to know sign language, well some ofit, most of what we've taught her. so she seems to catchonto that, but when it comes to speaking, I don't know, shejust can't talk."Mark feels his biggest loss is the inability of hisfamily to go away on vacations. He lives in a communitywhere trips to Hawaii, or ski trips to Whistler arerelatively common and Mark has not had these opportunities.He claims that when he was younger the consequences of notbeing able to participate in these kinds of adventures lefthim feeling somewhat left out. Mark however says that ifhis father had more than two weeks holiday a year this lossmight have felt more significant but under the circumstancesthe family could not go very often anyway. "Seeing as mydad only gets two weeks off in the summer it doesn't reallytend to bother me at all much."Mark has spent his latter summer holidays getting jobexperience in preparation for his future. He has worked asa volunteer in a local pet clinic and as a volunteer campcounsellor at the community recreation center. He enjoyedboth jobs but preferred working when there was lots to do.Mark also enjoys children and finds them easy to be with.Mark has an active mind and prefers a challenge.75Mark's day is much like that of any other teen. He isawakened in the morning by his mother. He proceedsindependently to shower, dress, read the paper, eat and gethimself off to school. His sister is usually at the tablefor a part of his breakfast though she does not intrude onhis space. School takes up the greater portion of the dayat the end of which, if there are no practices, he rides thebus and walks a good distance to his home. Once home hesays he will either do homework or "vege".His father and sister generally return home around sixo'clock at which time he watches his sister while his motheris arranging dinner and his father is changing. Dinner iseaten together as a family with his sister joining themusually once the salad is served. The family clean uptogether with some working and others watching his sister.Mark then does homework or watches TV. Mark's parents takeon the major role of caring for and amusing his sister.According to his parents the evenings are regimented aroundtheir autistic daughter as she takes up all their time. Twonights a week they have a short one and a half hour reliefwhile a child-care worker takes her to swimming or girlguides. Mark seems to be somewhat untouched by thetremendous amount of energy, time and concern that hisparents give to his sister. He views his life as prettynatural with his parents doing what parents do and himself76doing what most kids his age do. He is at a stage where theopportunity for independence is welcome thus he is in no wayconcerned with their need to be present for his sister.On the other hand Mark is aware of the sacrifice hismother has made with regards to her career. "Before she hadme she was a principal so she might be able to go back andbecome a principal or she could go back and be full time ifKaren was normal or she could do that. But she isn't so."His attitude is one of acceptance and finality.Mark accepts his future role regarding his sister asbeing similar to that of any other brother towards hissister. He is aware that his sister will probably be movedinto a home and be cared for by others. He has been askedto visit her and have her visit him occasionally for familydinners and special events.There are hard times too in Mark's life. Hewholeheartedly admires the ability of his father to handlehis sister. "My dad, he, he's great with her I guess is allI can say." On the other hand he sees the frustration ofhis mother at times, "My mom being a lot weaker than my dadis, I don't know. Now and then my sister will justoverpower her and she just can't handle it. So it doesn'thappen often, but every once or twice a week she'll not beable to handle it." Mark himself is bigger than his mom andis able to simply pick his sister up and move her if she is77not fighting too hard. Her most difficult behaviour is"squatting" according to Mark. She does this when, " shejust gets frustrated cause she can't get her way". Mark'sreaction at these times is one of frustration but not anger."She doesn't do anything for me to be angry about".His relationship with her is "she's my sister". Shedoes recognize him and will wave or try to get hisattention. Mark has no trouble going up to her whenever hesees her in public to say "hi", and to check out with thechild-care worker how things are going. He comments thatthe whole "concept of her having autism is sad". He knowsthere have been changes in her behaviour since she waslittle but as he has lived with her daily the changes havebeen so gradual that he has not noticed them.Mark considers Karen a part of the fabric of his familylife. In his words, "It's not that the family revolvesaround her. It's just 	  certain families will go on along weekend or a vacation 	  but if we have Karen wecan't do that sort of thing 	  We can't go shopping forthe day. We can go for walks and stuff." She is his sisterand thus he is fond of her and somewhat protective. Howeverhe is a adolescent and his own issues of autonomy andidentity are presently his main focus. He has decided tonot dwell on some of the negative aspects regarding his78sister. It is fruitless to dwell on matters that cannot bechanged. His focus is positive and accepting.Mark believes that his parents have carried the majorportion of the daily responsibility towards his sister. Byso doing, Mark's space as a person has been protected. Healso recognizes that what may appear as difficult or awkwardsituations to some are natural to him because "after 10years of living with such situations you get used toanything". His family has given him a sense of competenceas his parents have successfully taken a leadership role toensure that the presence of autism in the family is acceptedand managed.Portrait of Stuart Stuart is 14 years old and is the youngest of two boys.His brother, Alex, is 18 and has autism. The family haslived together until a few months ago at which time Stuart'sbrother moved into a residential home. Stuart's parents areboth intelligent, highly academic, and investigative people.Stuart is a long term Canuck hockey fan keepinginformed and involved through the games by TV. He used toplay hockey until he broke his leg and could not continue.At lunch time Stuart plays recreational football while afterschool he enjoys street hockey. He is seriouslycontemplating returning to hockey for next season.79Stuart has good friends with whom he shares mutualinterests and activities. He is timid, kindhearted, playfuland intellectually adaptive. Stuart has attended catholicchurch with his family where he has received andincorporated many of his values.Stuart participated in the scouting movement when hewas younger. He describes the leaders as "amazing". "Theywere probably some of the best people you could know. ...you could really talk to them". These leaders played asignificant role in his life by providing an outlet and asafe environment to explore new independence. They werealso role models from whom Stuart learned new ways to reactto his world. "They were a little lighthearted, not as deadserious .... it's fun to joke around a little more." Heenjoyed their lack of rigidity and their love of freedom,fun, and spontaneity. "I always felt good usually aboutthem." He since has developed more friends and left scoutsin preference for spending time with them on weekends.Stuart loves computers and finds that most of his closefriends are also interested in and conversant with manyaspects of computers. His hope is to be an engineer workingin the area of robotics. Stuart claims to be an averagestudent though, at this time, he is excelling in science andall of his grades are well above average.80When asked if there was anything in school he dislikedhe answered that he "probably disliked" riding his bike inthe cold every morning and having his hands cold on thehandle bars. He dislikes physical discomfort. "you usuallydon't have a jacket on or something like that and youusually get cold somehow cause its not very warm inNovember. He repeats his dislike of physical discomfortwhen talking about camp. "when it rained it was horrible.... Sometimes your tent just got all muddy and you neverfelt good." Stuart enjoys intellectual challenge more thanthe great outdoors.For Stuart there was no particular moment ofrealization that his brother was different from otherbrothers. Stuart believes he always realized his brotherwas different. "My parents told me very much when I wasreally young and I didn't think much of it at the time." Heremembers being happy and content with his own interests,activities and friends.Stuart recalls some annoying incidents concerning thebehaviour of his brother. "... cause if you're trying toeat in the morning and you've got someone clearing theirthroat regularly you just don't feel great ... it was alittle unnerving." He continues, "sometimes he got to youif he asked your friends questions a whole bunch of timesand the friend just didn't want to talk or it was someone81new you were trying to meet. You didn't want to put a hexon them right away." There were times when his brotherwould simply not go away.Similarly, Stuart comments on his lack of privacy. "Itseems to me that I don't have anything that's really mine."Stuart's brother would take things and sometimes destroythem. "I have my school annual and whenever he comes overhe wants to look at it. It's my only annual and it was gonefor about six months and it was gone and I'm supposed tohave this for years .... he used to rip out pictures. Idon't want him destroying it." These incidents areirritants to Stuart as well as frustrating. Stuart handlesthese situations by hiding his important things.	 Hisbrother would search for them but he did not always findthem. The difficulty was that after hiding things so welloften Stuart could not find them either. Stuart comments,"I didn't notice it that much though. I usually had thingsI could go off and do and forget about it."Some of the behaviours of his brother left him feelingawkward and embarrassed. "He'd ask people what their namewas a lot and I don't know I guess that embarrassed me a lotof times ... I just wanted to drag them away .... He'dpersist .... I wanted to break the chain before it evenstarted." He recalls telling his friends not to think aboutit much and, for the most part, he feels that they were able82to accept his brother. However, there were moments andtimes when he sensed confusion, fear or awkwardness inothers. "I asked them not to think much of it and they'dsort of, they wouldn't say much. But I could sort of tellif they were interested or disinterested and it wasconfusing enough." "But all in all I really stayed out ofhis way most of the time. I tried to keep down the impactor something like that." Stuart tries his best to live hislife separately from the chaos and strain of his brother.A typical day for Stuart would consist of early wakeup, shower, possible finishing of homework, seldom breakfastand off to school. He would return late, do homework andwatch TV. His brother for the most part would be on hisown, "He liked to keep to himself a lot". There would bethe occasional eruption which was handled by his parentssending his brother to his room and, if need be,compensating Stuart in some small way for any injusticeinflicted on him by his brother. Meals were always eatentogether when they were young with no particular disruption."It was just sort of set the table and eat and go away."More recently, however, "Well it's interesting. We neverreally eat together." Stuart retreats quickly after themeal while his parents converse about matters that do notinterest him.83About his life, Stuart believes that he did not feellike an only child, but rather as "an observer half thetime. Someone who's sitting on the sidelines watching thefootball game or something like that". Stuart had friendswith older brothers whom he admired and who were kind tohim. They served as role models for him allowing him tochoose and create a sense of identity.In his elementary years Stuart attended a private,Catholic, French immersion school on the other side of townfrom his home. Therefore his school life and many of hisfriends were not connected to his family life. He remarks,"the most amazing thing is most of us didn't know eachother's sibling until grade six or something. I knew themsince grade one and everyone was amazed to find out that Ihad a brother and they probably didn't realize that he wasautistic until grade seven and by then they probably didn'teven realize what autistic was." Occasionally Stuart wouldbring a friend home on a Friday for a sleep over. Thepresence of his brother did not deter or influence theseoccasions. His brother mainly kept to himself. He feelsthat the fact of his separate school life was due to thedistance of his school not due to the presence of hisbrother with autism.In contrast to this separate existence, Stuart lives ina very stable neighborhood where everyone knows and84interacts with one another. His brother was integrated intothe neighborhood and accepted for who he was and what hecould or could not do. These are the long time friends towhom Stuart does not have to explain himself or his bother.Stuart developed many more close friends once heentered his neighborhood secondary school. He enjoys a moreaccessible world and is gaining a growing feeling ofbelonging and independence. Now in his second year of highschool Stuart finds himself occasionally answering questionsregarding his brother from his new associates. Often theirquestion is, "What's it like living with him?" Stuart'sreply is "What's it like living with your brother?" "How doyou explain a life time in one or two sentences? How do youbegin to become accurate? Also there is the underlyingquestion of are they really interested or are they justmomentarily intrigued?" Further Stuart says, "Well ifpeople are tying to trick me I don't like it. If people aregenuinely curious then that's okay, but not the other."This feeling of betrayal is not a frequent experience forStuart but nonetheless he knows it and does not like it.Further and more important is the fact that Stuartknows only the life he has led. He says it is not all thatdifferent from living with any other brother. It is onlythat "when he's away from the house or something or whenhe's not around, he'll usually do something not particularly85normal." Stuart's friends do not make an issue of theseincidents. People do not talk about it. "they sort of knewthat it wasn't a great thing to talk about."Stuart for the most part is clear that these situationshave not really hindered him. However, he wonders ifperhaps indirectly there have been subtle consequences."Somebody probably told somebody else and somebody probablydidn't like it or something and they didn't think much of meat the time. But if anybody was immature enough to notreally accept it ...." Stuart's attitude is one of wellwhat can you do?When he is experiencing difficult feelings of hurt,anger or sorrow he walks away from it and tries to thinkabout it. He has no one with whom he talks about these verydeep feelings. His preference is to work it out by himself."I run away. I try to get away from everything. I try todo something to try to forget about it. I don't want todwell on it and get madder." When this does not work Stuartsays, "I usually try to think about them. I watch otherpeople and try to adapt to them, try to be a little morelike them or not like them .... I see someone really blow afuse and I think I don't want to be like them. I try tocalm down and try to understand what I'm really mad about."Stuart's closest friends share his values and beliefs.When speaking of his friends he says, "I usually like to86think of them as a lot of nice people." They have workedout a mutual means of supporting each other without talkingabout the troubling parts in their lives over which theyhave little control or power. What Stuart values in afriend is the ability to have fun and "just talk to withoutthem giving you the ugly look like "what". Stuart does notwant to always have to explain himself, his actions or hisbrother.In terms of the reactions of others to his brotherStuart has noticed an air of artificial friendliness, "atrick .... like a shield .... a fake face." These reactionsdisturb him as he witnesses their effect on his unsuspectingbrother. His only defense is to tell them to "cut it out"and then just walk away. These occurrence leave him with asense of hopelessness and powerlessness. He has alsoexperienced occasions when the behaviours of his brotherhave been exaggerated to the point of disbelief. When thisoccurs, Stuart is torn between a sense of certainty thatwhat he is hearing cannot possibly be true and a sense ofincredible fear "What if it is true?" Once again, Stuart'sresponse is to retreat hoping that the memory of theincident will disappear with time enabling him to get onwith the more enjoyable parts of his life. He says thatsome reassurance during these occurrences and some directinformation would have helped. He is all too aware,87however, of how these same incidents affected hisoverwrought parents who were left having to deal with theevents.He admits that it is hard to understand what it must belike to be his brother. "I never really had to go anywherewith my brother and I never really felt handicapped myself."He recalls the time when he broke his leg, "I felt reallyalone a lot of the time cause I couldn't go outside and playand I watched them outside and they were outside having funand I was stuck in the TV room with the TV". He focusesrather on living his life to the best of his abilitieswithout infringing or encroaching on the rights and space ofhis family. His explanation for his brother's autism issimple. "It like being mentally handicapped. He doesn'tunderstand things the way we do."Stuart has had few responsibilities as a direct resultof the handicap of his brother. Once in a while he wasasked to baby-sit. "I sort of had to keep an eye, to makesure .... He'd do stuff." This was a relatively easymatter as his brother would watch videos or TV. He could dovery little with his brother in terms of activities due totheir vastly different abilities and interests. Stuartremembers liking to watch him draw sometimes. He thoughthis brother was quite artistic. However he did not drawoften. "He usually kept to himself." Stuart does not88really have a relationship with his brother. He cares forhim as his brother but cannot share with him or relate tohim. "I don't think it's really possible to have arelationship with him but, cause it's awkward in a way."Whenever Stuart did try to play a game of some sort with hisbrother he would not understand and would then just walkaway. His father is the one who spends time trying to dothings with, and communicate with Stuart's brother.Stuart enjoys a lot of freedom in his life. He valuesthis independence and believes this is a benefit he hasreaped as a result of having a brother who has needed moretime and attention from his parents. "See I get all thesepluses and things that other kids probably wouldn't havehad. Then I get all these minuses. So everything sort ofevens out." He believes that if his brother were "a realbrother" he would probably get "a whole lot more attention"at times .... but then again I would feel really strict andtight." Continuing with this theme Stuart remarks that,"there are a lot of troubles apparently that come along witha brother. Getting seriously beat up and you're small, orhim hogging the TV or the video or something like that. SoI don't know if it'd be better then". Stuart furtherfantasizes that if his brother were not autistic, "mybrother would probably be doing excellent in school ... I'dsort of be the second one who's got to keep up or something.89I'd have a lot less freedom." Stuart perceives his life aspretty good the way he has it.Stuart spends his time learning new things, getting toknow new people, and striving to his achievements. Hisapproach is positive and constructive. His parents areavailable to him if and when he needs them for help but atthis point in his life he is seeking independence and hisown sense of mastery and identity. He openly acknowledgesthat "they seem to know a lot ... most adult anything", andthat his father in particular is great to have around formath homework. He is, however, proud of the A he has earnedin science, "science is the only class I don't really wantto trust them with, cause that's my A and I'm going to keepit." Stuart comments that he finds his father moreapproachable than his mother, "He's a little easier to getalong with."Stuart seldom if ever brings up the topic of hisbrother to his friends. "It's usually not that subjectcause it's a little touchy cause it's hard for them too."He has tried to not have his brother play a larger part inhis life than is necessary. There are times when Stuartfeels sad and sorry for his brother. However he chooses notto discuss this with his friends. His feelings are deeppainful ones that are hard to share and difficult for othersto understand. "I wouldn't want to be them. If someone90walked up to me, so I'm really feeling sorry for my brotherlately .... they'd probably just ... feel really bad causethat puts you in a position that you just don't like.	 Idon't like putting people in that position." In a sense apart of him grieves for his brother's loss. He chooses notto share these difficult feelings with others as he does notwish to burden them with this sadness. "It's not somethingI'd really want to start with my friends cause then fromthen on it'd sort of be like a whole topic of conversation,sad things or autistic people." Stuart keeps this part ofhis life locked in a compartment away from the rest of hislife. In this compartment is his awareness of the probableloneliness and isolation of his brother. "Sometimes it waskind of hard. It's like seeing someone who's really nicebeing put down." He is torn by feelings of helplessness,and concern yet he feels he must fight for and protect hisown sense of identity as separate from that of his brother.Stuart as a teen is now more self aware and moreconscious of the thoughts and feelings of people in hissurroundings than he was at a younger age. As a young childhe was less concerned with the reactions of others. Thedeparture of his brother from the home has occurred at atime in his life which coincides with the expansion of hisown consciousness. He recalls shopping with his brother inthe past and not being bothered by the experience. He knew91few people then and was occupied by his own thoughts andactions. He recalls it not being a "big social down oranything."The difference in his family now that his brother isliving elsewhere is explained as, "Well I guess it's kind ofnice to have peace around here, cause most of the time myDad was chasing after him and I don't know, I feel a lotmore comfortable now that I don't have to worry about ithalf as much." Although his brother kept to himself most ofthe time he did play his stereo rather loud and was prone tobanging on doors late at night. "I usually manage to get tosleep. I drowned it out with pillows."When speaking of the future and Stuart's possibleresponsibility towards his brother, Stuart speaks of hisbrother being in a home wherein he is wanted and which ismeant to be permanent. "I don't really think I'd be able todo much for him. He's in a permanent home now and he shouldstay there." Stuart will visit him now and then but directhandling of problems or difficulties will be managed bysomeone other than himself. For the moment thoughts ofvisiting his brother are disturbing. "It wouldn't be thatmuch of an experience. It would probably just be ... Itwould be more saddening than happy if anything." He wantsto think of his brother as "just a brother, nothing else.It would be nice if I had a self sufficient brother, just a92plain old brother. Nothing that you have to support lateron. That's what I don't want." Stuart would like his lifeto be uncomplicated, less stressful, "more simple".On one hand Stuart wonders what it might have been likefor his whole family if his brother had been normal. Yethe says, "Maybe my parents were half lucky. I guess theycould say that Alex may have been a bad apple but then theygot me and they can be grateful for me." Stuart commentsthat some people can not even have children and that othersend up having difficulties even when their kids start outphysically normal. "Some kids get into drugs and all kindsof trouble, Alex would never do that. He's not that kind ofkid." Stuart does not spend his energies on wishing forthings that are not possible. He has accepted the presenceof his brother in his family and has turned his resources toliving his life moment by moment to the best of hisabilities. He intends to have a family of his own one dayand he does not dwell upon the issue of possible problems inhis own offspring. After all, he claims "people always havekids and they don't seem to consider that this kid may havecancer".He says he always wanted to have a cat for a petbecause, "They give you affection and you don't have to takecare of them." Cats are independent and, according toStuart, when they encounter danger, a cat will climb a tree93unlike a dog which will bark and get run over. Stuart isequally intelligent, independent and observant. Stuart islike the cat, "They take care of themselves." His familyhas allergies to cats so, unfortunately, this pet remains afantasy.His advice to others in his position is not tocriticize their parents for anything. "It's hard enough onthem already." Stuart's major contribution to the plight ofhis family was to "stay out of their way most of the time."He learned by watching how other people did things. Bymodeling parts of himself after portions of others. He isself-creating a style and life for himself. "I've gainedself sufficiency." He says it has been "very hard to do".One of Stuart's final comments is, "If life gives you alemon, then make lemonade out of it." Stuart is essentiallycontent and happy with his life. He is struggling to growand is working on one piece of his life at a time.94Chapter V. Discussion.Introduction This chapter deals with the findings of this study.The first sections summarize the findings of the study inthe context of emergent issues of each of the participants.The following sections outline some of the limitations aswell as theoretical and practical implications of thisstudy. Finally, suggestions are also made for futureresearch.Findings OverviewThe portraits of the siblings of children with autismin this study support the view of a varied and diverse setof experiences. Each of the portraits in this studydescribes the experiences of growing up with an autisticmember in the family from the specific perspective andcontext of the sibling. Some similarities could be foundbetween the cases studied to the extent that there werecontextual similarities. For example, in two of the cases,the siblings were older than the autistic member of thefamily and in both cases they had established family tiesprior to the arrival of the autistic member. Althoughsimilarities such as this could be found, the experiences ofthese two siblings also varied greatly. In this study, allindividual portraits varied greatly and it would appear that95the experiences of each sibling of growing up with anautistic member in the family is best understood in theirown context. However issues did emerge for each of theparticipants and though each issue was dealt with indiffering manners these issues were constant for eachfamily.Elements of this context that assist us inunderstanding these experiences include appreciation of thedegree of autism, the characteristics of the behaviour ofthe autistic member, the birth order of the siblings, thesibling genders, and the scope of the family resources, bothinternal and external. We also need to appreciate thefamily, social, and economic environment of the siblingsstudied in order to gain understanding of their experiences.The experiences and the views of the experiences ofgrowing up with an autistic member in the family will notonly vary between the individual siblings studied but foreach individual will also vary over time. This studycaptures the experiences and perceptions at the point oftime where the subjects are transitioning their adolescentdevelopment. Therefore, a degree of commonalty between theexpression of the experiences of the participants wasobserved relative to this developmental stage. One canspeculate that these perceptions may change if examined at alater stage in life.96Living with an autistic member in the family is a lifetime process which begins soon after the member begins toreveal different behaviour. Regardless of the hopes andaspirations of the family, some degree of awareness andadjustment is required. In each of the cases in this study,the families addressed this need for adjustment in varyingfashions, striving to minimize the stress on the familythrough balancing the available resources, both internal andexternal, to achieve the diverse needs of the family. Thisvariety of ways in which the families addressed this needprovides the variety of the context and the richness of thisstudy.Each of the experiences described in this study isunique, describing the experiences of the individual fromtheir own perspective. Each of the experiences providesinteresting insights as to what it is like growing up withan autistic member in the family. The following sectionsexamine the common issues in the cases studied as well assome of the variations on the issues.Background Each of the participants in this study comes from asecure environment. Their families consist of two parentswho have been with them since birth. They live in stableneighborhoods where they have established long term familyrelationships. These participants all have family97atmospheres in which the parents care for one another andtheir children thus providing secure environments forpersonal growth.In each of these families, one of the offspring hasautism. In one family, the sibling was an eldest femalechild with a younger autistic brother. In the secondfamily, the sibling was an eldest male child with an youngerautistic sister. In the third family, the sibling was ayoungest male child with an older autistic brother.Through this study, it became apparent that each ofthese participants have experienced many of the normal day-to-day dynamics of family life. Division of labor aroundthe home has been negotiated according to individualpersonality, ability, and expectation. In each of thefamilies the mother has had the major care-taking role ofsupervising, initiating, and organizing activities aroundthe home. In all three homes the father has also becomeinvolved in the day-to-day activities of the childrenincluding both the handicapped and the non-handicappedchild.Each of the participants had accepted their siblingwith autism as an integral part of their family unit.Although accompanying their sibling with autism in publicsituations often resulted in feelings of extremeembarrassment coupled with righteous indignation, none of98the participants expressed any reluctance or resistance tobringing friends into their homes. All three broughtfriends home trusting in the fact that the friends wouldlearn to ignore, accept, and understand the behavior oftheir sibling. Each sibling rallied to the support of theirsibling with autism whenever their rights or dignity as ahuman being appeared to be in jeopardy.In the interviews, these young people described what itis like to have a brother or sister with autism. They spokewith amazing candor and clarity about their experience.They allowed their own personal experience to guide theirwords. They talked about frustration, guilt, pain, anxiety,fear, anger, sadness and embarrassment. They also talkedabout love, hope, and about personal growth and of specialfamily and outside relationships. Emotions are not pure andsingular to an event. The reaction to a specific incidentmay have many facets and layers. This was certainly thecase for the brothers and sister in this study.Each of the autistic siblings required almost round theclock care. Bedroom doors were locked at night in order topreserve some time wherein the rest of the family couldsleep without fear of the child with autism escaping orharming themselves or damaging their surroundings. Supervigilance was necessary during all waking hours and someonehad to be responsible for the child at all times. No99element of daily life could be taken for granted. Parentsdared not be sick. Siblings did not leave precious thingslying about. Mothers and fathers were one hundred percentavailable even when a respite worker was on duty in case thechild misbehaved and could no longer be handled.Each child with autism was physically normal andattractive in appearance. Each child with autism had ameans of communication in order to have some of their needsmet, however, they did not appear to be able to reciprocallyrespond to the needs of others. Further to this, the styleof communication ranged from "squatting", to screaming, tobiting, to semi appropriate speech.As an observer in the family it was evident that theanomalies of the behavior had long since been adjusted to bythe family members and it was only highly irregular from thepoint of view of the outsider. These family members hadcalled upon resources from within and without the familyunit to accomplish this adjustment. They seemed to havedeveloped a high tolerance for disruption, be it by theirautistic child or by the presence of child-care workerscaring for their child with autism.The many ways in which the participants have learned tocope with the experience of living in a family where one ofthe members has autism were not necessarily at a consciouslevel. These adolescents had learned to adapt largely100through following the example of their parents who each hadaccepted their autistic child as an integral part of theirfamily. Each set of parents cared deeply for each of theirchildren and each family had an expectation that theirautistic member be accepted wholeheartedly as a personwithin their own right. Each family was seeking integrationinto society for their handicapped child in order to promoteacceptance on as many levels as possible. This, then,provided the atmosphere and background for the non-handicapped children to deal with and integrate theirhandicapped siblings into their lives.A common stress factor for both mothers and fathers ofautistic children was their care giving responsibilities.The constant and persistent amount of care that is requiredwhen keeping a family member with autism in the home isdraining and exhausting. There were times recalled by eachparent when the needed support to continue was no longeravailable from within the home and outside help was soughtin order to continue. It has been noted in the literaturethat, just when parents of disabled children need each othermost, tragically they are unable to help each other(Featherstone, 1982).A high amount of personal sacrifice on the part of theparents of the autistic child became evident during theparent interviews. These sacrifices were in terms of career101limitation, financial security, social isolation, andphysical and mental health. All parents were required toprovide inordinate amounts of long term care-giving to theirdependent child. This caring is often very routine. It iswearing and chore-related, consequently lacking in many ofthe perks normally associated with child-care such asvisiting, exploring and discovering together. Burn out thenis a constant threat for these families and their only hopefor relief lies in the availability and accessibility ofoutside resources to supply both a break and relief fromtheir incessant routine.An observation regarding the parents, most notably themothers, was their strength, tenacity, and courage. Theseparents had to learn to deal with the shattering of one oftheir most precious dreams, a life filled with the hopes andpleasures of a healthy child. One of the fathers said thatthe present condition of his child was "his worstnightmare". These same parents had found educationalsettings for their children, therapy for themselves whenneeded, respite, and child-care services. None of theseservices were automatically delivered to them upon diagnosisof their child. For each vestige of care or relief, lettershad been written and battles fought.Thus these parents risked being perceived by someoutsiders as overly aggressive, angry, or non-cooperative.102Each of these families had been negatively judged andconsequently bruised and scarred by various outside supportpeople whose functions were to understand and assist in thevery difficult task of caring long term for a family memberwith an extreme handicap. At these times the families feltdiscouraged, hurt, angry, and betrayed. In my experiencethese parents had to learn to be fighters so that theirchildren and families could gain some semblance of normalcyand acceptance in our community.On a more positive note, however, these same familiesreported true appreciation for those in the field who didprovide practical, long term understanding and support.These were professionals who had stuck by them over theyears without judgement and who had helped solve many of themultitudinous problems encountered. They had listened andhelped enable the families provide the care they needed andexpected for their children. This trust is critical and canbe fragile for anyone who wishes to work in this field.As the interviews progressed issues emerged thatappeared to arise out of living with a member with autism.Increased burden of care is endemic to autism, thereforeissues surrounding responsibility arise. How the familyportioned out and dealt with the extraordinary amount ofcare necessary for their autistic child became pivotal ininfluencing the development of the non-autistic child as103well as the experience and perceptions of the non-autisticsibling.Restrictions in the over-all life experience andopportunities of the non-autistic sibling seemed to ariseout of the extreme amount of intrusiveness of the autisticchild. Many normal family activities were restricted due tothe inability of the autistic member to participate oraccommodate to spontaneous or non structured activities.Their obtrusive behavior also prevented or discouragedothers from volunteering to care for the child in order toallow the family to take a much needed break.In two of the cases the autistic child intruded uponthe personal private space of the family. There appeared tobe little to no peace in the home while the child waspresent. Neither psychological nor physical space wassacred. The autistic child did not sleep through the night,did not attend to any one activity for any length of time,did not respect personal items, and did not respond toverbal admonition or reasoning. Thus issues of privacy,identity, and uniqueness had to be dealt with in novel andcreative ways.A clear sense of identity that was separate, yetconnected to family, was emerging for each of theparticipants in this study. Each sibling was emerging as astrong, mature, and compassionate individual. Each has had104the support and benefit of parents who have worked hard tomaintain a semblance of normalcy in their daily lives inspite of the disruption caused by the presence of anautistic family member. The parents in all three cases hadskills and resources which enabled them to be leaders andadvocates for their children. The parents in all cases wereable to be in charge and had the self determination to fightfor the help which is necessary in order to raise a childwho is autistic. Each participant had found a place andspace either in the home or outside the home which wasprivate and separate from their family. This separate spacewas respected by each parent. Responsibilities were in allcases shared and divided in such a way that the non-autisticsibling was free at times to escape into the normal world oftheir pers without guilt or negative consequences. Therestrictions in all cases, though present, were shared andmanaged by all and communication was permitted for feelingsto be expressed regarding the accompanying frustrations.The three participants had created a philosophy of lifewhich allowed them to deal with the disruption in theirlives. They had each positively evaluated aspects of theirlives at such a level that they were in fact empowered byelements of their over all experience.105Responsibilities Each of the participants had varying degrees ofresponsibilities towards their siblings. Asia, being theeldest daughter in her family, carried the mostresponsibility with regards to both of her brothers. BothMark and Stuart did occasional baby-siting though in neithercase did this responsibility seem onerous. Neither boycomplained that their responsibilities interfered with theirown private time. Asia, however, commented that frequently,especially on weekends, she found herself caring for herbrother if she could not make plans with her friends. Shewould much rather have been simply spending some quiet,private time on her own.This difference in responsibility of each of theparticipants in this study is also reflected in theirindividual early memories. Asia was five years old when herbrother with autism entered her family. She remembersvividly having to adjust to the new family member. In thiscase the child did intrude very much into her establishedpattern of living and she recalls being called upon as aresource to help out in instrumental ways. She remembersthat life changed for her at this time and she recallsfeeling very angry about that change. Her memories aremixed however as she also recalls still being very specialin the eyes of her family. Her recollections reflect the106struggle of her family to deal effectively with two youngchildren who needed them.Mark, the eldest child by three and one half yearsremembers very little change in his life, including hisresponsibilities. In this case the parents absorbed most ofthe stress of dealing with a new and difficult child andreached outside the family for needed support and services.In this instance little change was required of the sibling.His place in the family was protected and he was able tocontinue to grow according to his own needs. It should bementioned at this point that the new sibling was a girl andperhaps gender factors help account for his ease inadjustment.Finally, Stuart, the youngest sibling was born into ahome where the older brother with autism preceded him bythree and one half years. He entered into a predeterminedsituation and never knew anything different. His brotherwith autism had already established his presence and theyounger brother adapted to this situation by taking up aslittle extra space as possible. He took on theresponsibility of his personal growth needs by looking tooutsiders. Stuart found mentors and role models from whomhe could shape and borrow ways of being. He did not want toinfringe on the already overworked space of his parents."It was difficult enough as it was".107These young people felt varying degrees ofresponsibility for their handicapped sibling with regards tothe future. In each case the siblings had talked to theirparents about arrangements which had been made for theirsibling. In each instance plans were established for thechild with autism to be placed into some form of residentialcare. None of the participants would be held financiallyresponsible for the well-being or maintenance of theirsibling. Asia, the eldest girl, had taken on the greatestamount of responsibility for her brother with autism. Sheexpected to take on the maternal role of being present inemergency situations as well as maintaining an acceptablestandard of dress and hygiene for her brother. She was moreintimately aware of the details of her future relationshipwith her brother than were either of the males in thisstudy. She was fearful of what that might mean in terms ofher daily life and how that might affect her career.Stuart and Mark were both somewhat fearful of notknowing what was ahead but were less anxious about of theirresponsibilities than Asia. Mark, the eldest brother, iscomfortable with keeping a family connection with his sisterand including her in special family events such as Christmasdinners, birthdays and the like. Stuart, the youngestbrother, seems comfortable with knowing that his brother is108in the permanent care of others. His involvement with hisbrother will be casual and self initiated.The participants in this study felt a strong sense ofpersonal responsibility for the behaviour of their siblingand expressed feelings of guilt, often in conjunction withtheir conscious embarrassment with some of the behaviour oftheir sibling. Stuart vacillated between guilt, shame, andembarrassment when his brother was being obnoxious to hisfriends. Asia too wavered between frustration, shame andguilt as she realized that her brother was not in charge ofthe way he behaved. Asia, Mark, and Stuart all spoke offeelings of embarrassment and frustration when they feltthey could not prevent their sibling from persuing a certainbehavior pattern that they felt was damaging.Embarrassment is a painful emotion and is very closelylinked to feelings of shame. This sense of shame reflectsto a degree on the sense of being strong and okay in theworld. The behavior of the autistic sibling is seen as anextension of the self and as such acts as a threat. Thenon-autistic sibling is aware of the outside world judgingtheir sibling as being unacceptable and the vulnerable partsof themselves fall prey to an internalization of thesefeelings. As young people they are particularly vulnerableas their sense of self is not yet fully developed. Aconcern for practitioners might be that if these feelings109are not expressed and resolved then that part of the innerself might not ever grow and develop the strength toovercome such feelings.Restrictions Due to the extreme nature of the behavior of thesibling with autism, many aspects of normal life had beenrestricted. In all three families the siblings shared inthe belief that they had lost out in terms of vacation time.Not only was there a limitation in the amount of timeavailable to the family for vacations, but, whenever aholiday or excursion was to be planned, there was always theadded stress of determining who would care for theirautistic sibling and for how long.All three siblings felt they had lost out onexperiences and opportunities that result from planning,participating, and enjoying new and different adventures.Each one yearned to just get away and see and do somethingdifferent from their daily routine. In addition, thesiblings pointed out their inability to participate in manynormal and spontaneous family excursions, such as ski tripsor shopping. They felt that these losses, in part,contributed to their perception of the separateness of theirfamily. To my knowledge, the consistency of this responsehas not been reflected in the literature.110In addition to these more obvious restrictions, therewere many more day to day tedious restrictions. As anexample, refrigerators were locked and keys kept in hiddenplaces away from the reach of the child with autism. Thisresulted in an irritating series of steps required in orderto retrieve the simplest of items such as a snack or a drinkafter school.On yet another level, restrictions were placed upon thenon-autistic siblings in terms of their natural behaviouralresponse to behaviours of their siblings with autism. Theywere not permitted to strike back when and if they wereabused in some way. They were often obliged to conform to aformal behavioural program for handling and modifying thebehaviours of the autistic child that deemphasizes physicalresponse and emphasizes being part of a social situation.The participants in this study expressed feelings offrustration in situations where they were unable to easilyparticipate in vacations, spontaneous activities or whatthey considered to be normal family activities. For Stuartand Asia, frustration was often associated with feelings ofembarrassment, anger, pain, and sorrow.None of the siblings felt that their career choices hadbeen restricted or influenced by the presence of an autisticbrother or sister. Mark had chosen dentistry because of hisabilities in the sciences and his desire for a high paying111job. Stuart had chosen computer robotics due to his gift inthat area. Asia had likewise chosen an area of expertisethat gave her enjoyment and in which she was presentlysuccessful. Each of the participants had also chosen acareer which conformed to a family trend. Asia's family wasinvolved in the arts and both Stuart's and Mark's parentswere involved in professions which emphasize science andmathematics.Privacy A major concern for the siblings of children withautism in this study was the invasion of privacy. Childrenwith autism often have little sense of personal boundarieswhether these refer to the physical self or to possessions.Asia anguished over not having anything that was personaland private. She had no symbols in the external world thatrepresented the sanctity of being unique and apart fromothers. Stuart too felt that he owned nothing that wassacred to himself. Even his precious school annual was notsafe from his brother.In each of the cases, there was very little privatespace in the family. In some instances, doors had to belocked in order to provide a measure of privacy and someprotection of personal effects. The autistic sibling wouldintrude at will on the personal space of the sibling. Theeffect of this intrusion varied with the degree of the112autistic behaviour expressed. This is most certainly anarea of concern and should be addressed by those who work inthe field with families of children with autism.Angry feelings were noted by the siblings. Asia andStuart's siblings would hurt them at times. Asia's brotherwould reach out and hit her as she came down the hall orStuart's brother would pull his hair. The anger felt byboth was short lived and a natural consequence of thebehavior, an emergency reaction. Asia wanted to hit backwhile Stuart, being much smaller, would yell out for helpand his rescue from his parents. Neither attached permanentblame to their autistic sibling though both felt frustratedand confused as to how to deal with their abuser. Boththought the intent of the actions was not personal ormalicious. They each believed their sibling did not havethe social skills to express their needs or feelings and soat times resorted to negative, physical acts.	 Their angerwould sometimes lead to feelings of guilt, and resentment.Mark on the other hand is no longer dealing withdestructive or hurtful behavior from his sister. However,he did have vague memories from the past of instances whenshe would tear something of his and this reminded him ofmomentary flashes of anger.113Acceptance The issue of acceptance is one which permeates allaspects of the daily dealings of the non-autistic siblingwith their autistic brother or sister. Regardless of degreeof intrusive behaviors, the siblings all feel compassion fortheir sibling with autism. All feel a familial loyalty andhave accepted the autistic sibling as an integral part oftheir family and as a brother or sister. Each have felt thepain of external judgement and misunderstanding, althougheach have rallied to the support of their sibling and theirbasic human rights. Each have also suffered feelings ofshame, guilt, and embarrassment.Each of the non-autistic siblings expressed theirfeelings that the permanent condition of their siblingcaused them to feel deeply saddened.Asia: "Just that he is different and he'll always belike that. He won't change .... It's so sad"Mark: "Just the whole concept of her being autistic issad."Stuart: " ... I'm really feeling sorry for my brotherlately but I don't like to start a whole conversation aboutthat topic because then it would always be about sad thingsThis sadness was, in part, an expression of thefeelings of loss on behalf of the autistic sibling. Theygrieved for the inability of their sibling to partake in the114normal aspects of life, such as dating, good friendships,and fulfilling employment. It was also an expression of thefeelings of loss felt by the non-autistic sibling. Thecontinual permanence of the difficulties of their siblingmeant that they would never share a complete and fulfillingsibling relationship.All three siblings expressed a sense of pride in somearea of accomplishment of their autistic sibling. Asiacommented on the excellent memory and sense of humor of herbrother. Mark was proud of his sister learning signlanguage and her ability to act in a socially acceptablemanner. He was also proud to greet her in public whether hewas with friends or by himself. Stuart thought his brotherwas talented at drawing and regrets that his brother did notdo more art.There was a sincerity to the caring all threeparticipants felt for their sibling. When asked to describetheir relationship with their autistic sibling, each statedtheir love: "Of course I love him, .... He's my brother,"or "She's my sister". Their autistic sibling was viewed asa permanent part of their sense of family.Each participant identified strongly with a sense ofloyalty. Each sibling actively defended their lessfortunate family member whenever their dignity as a personwas threatened. In addition, Asia enjoyed her brother's115sense of humor, Mark was fondly amused by his sister's habitof entertaining herself in front of his fish tank or dancingto music. Stuart was comfortable with his brother returninghome for his birthday and felt familial attachment to him.All three siblings expressed interesting personalphilosophies which they attributed to learning toaccommodate to the unique behaviors of a sibling withautism. Each perceived difficulty in life to be a part ofour natural condition rather than as a major hurdle orthreat. They viewed the world through nonjudgemental eyes.Religion has played an elemental role in the lives of two ofthe three participants. The teachings of forgiveness,acceptance and love have given these adolescents a source ofstrength from which to draw.The coping strategies of the three participantsdiffered somewhat according to gender expectations. Asiadealt with her emotions through talking with friends andseeking moral support and understanding. She turned to afriend whose family situation was less supportive and lovingthan her own to express some of her concerns and emotionsregarding conflicts and misunderstandings between herselfand her parents of over her means of disciplining herbrother. This provided an understanding outlet for herfeelings while it also enabled her to reframe her view of116her family to include the more positive qualities ofhelpfulness and thoughtfulness.The boys on the other hand dealt with their morepainful emotions through putting them aside and involvingthemselves in activities that altered their perceptions ofthemselves. Instead of focussing on feeling trapped andpowerless, their activities enabled them to gain masteryover skills and to gain a sense of agency in their ownlives. Stuart involved himself in academia, computers, andhockey while Mark involved himself in athletics, jobpreparation and his hobbies.A compartmentalization of feelings was more evident forMark and Stuart than for Asia. "Stuart claimed, "I tried tokeep down the impact". This camouflaging of emotionsappeared reasonable in that these participants had littlepower over the situation associated with the condition oftheir sibling. To dwell upon the negative aspects thattouched their lives seemed, for the moment, non-productiveand depressing.Each of the participants found for themselves a strongsupport group outside the home. Asia was deeply involvedwith her church group which she cherished above all else.Mark had good friends who shared similar interests, whileStuart enjoyed his computer wizard friends and his hockeypals. They each had developed a large part of their lives117separate and apart from their sibling with autism and theirimmediate family. They each enjoyed the fruits of thisnormal healthy outlet.The participants all had made positive interpretationsof aspects of living with a sibling with autism. Accordingto Mark "It's like having a baby sister. You just have towatch them all the time .... It's no different." Stuarttalked about there being "plusses and minuses" and how hefelt that he had more freedom from parental interference dueto his parents having to be so involved with his brother.Asia believed that she had learned at an early age how toaccept the difficulties of life and still be able to go onwith her life. "You always let yourself shine through".All the participants in this study appeared to have emergedas strong agents in their acceptance and dealing with theirsibling with autism.Limitations One obvious limitation to this study is due to the useof volunteer participants. It is possible that onlyfamilies who were comfortable discussing their lifesurrounding their autistic member or who felt a need todiscuss their experiences participated in the research. Assuch, the recollections of voluntary participants may not berepresentative of the experiences of a wider group ofsiblings.118A further limitation of this study is due to the agerange of the participants. This study only focuses upon thestories of adolescent siblings of those with autism. Whatwas captured was the perception and feelings of siblings whowere at this one crucial phase of development. Theseperceptions and feeling may well have been expresseddifferently if a different age group had been chosen.Finally, a significant limitation of this study is dueto the fact that the findings cannot be generalized to alarger population. The number of informants was small andall participants were Caucasians and of a similarsocioeconomic status. The study does provide insight intothe experiences of the siblings of autistic family membersthat, when combined with further study in this area, couldlead to better understanding of the process of growing upwith an autistic sibling.Theoretical Implications At the present time there appears to be no adequatetheoretical model developed dealing with the impact ofgrowing up in a family where a sibling has autism. This isan evident gap in the research in the area of autism. Theissues that were identified in this study will hopefullyprovide the beginnings of this much needed research towarddevelopment of a fundamental way of looking at autism andits effects on the family members.119The presence of a family member who has autisminfluences the total family dynamic and everyone in thefamily. Therefore it is crucial to develop a theoreticalmodel that has a family perspective. One of the moreinteresting theoretical models that may be appropriate inworking with siblings of autistic family members is theMurray Bowen concept of differentiation (cited in Hoffman,1981). Bowen noticed in his studies that families with, inthis case, a psychotic member exhibited an intense clinginginterdependence which he called the "undifferentiated familyego mass". The concept of undifferentiation or fusiondescribes the sense that none of the parts or pieces canmove independently of the others or the whole and accordingto Bowen was a sign of trouble in the family. In contrast,Bowen suggests that families will do well where theindividual members maintain a high degree ofdifferentiation.In the case of families with a very dependent membersuch as a sibling who has autism, it would appear reasonableto expect that the degree of total family commitment tosupport this family member offers a fertile ground for overinvolvement and potential fusion of the family members. Inmany ways, the issues and the experiences expressed by theparticipants of this study suggest that this model may be anappropriate starting point for working with these families.120Each of the participants shared experiences that showedthat they felt significant responsibility toward theirsibling with autism. This responsibility ranged from day today care taking to feelings of personal responsibility forthe behaviour and safety of the sibling. The continued wellbeing of the autistic family member relied upon the co-operation and interaction of the remaining family members.This strong sense of responsibility must be balanced with astrong sense of differentiation for the family to do well.Another indicator that this may be an appropriatetheoretical model to use is the issue of privacy. Each ofthe participants expressed strong feelings of lack ofprivacy, of possessions, physically, and of personal space.As privacy is a normal means of expressing differentiation,the difficulty of providing this privacy would reasonablyseem to heighten the need for differentiation.Finally, the issue of restrictions, which was also acommon issue among the participants of this study, wouldseem to further indicate a potential for greater fusion inthese families. The fact that they were unable to easilyparticipate in the community, partake of vacations, orengage in spontaneous activity forced them to rely on eachother for their personal relief.121Practical Implications Autism is a significant long term stressor for thefamily and places immense pressure on each member of thefamily. This extreme pressure can result in magnifying thenormal push and pull of family members; the push fordistance and the pull for togetherness, as in the Bowenconcepts of differentiation and fusion. Consequently, thefamily will need to take significant measures to manage andcope with the situation. These measures will includeturning to the helping professionals for support andassistance. This study has identified a number of areasthat could be significant in providing this help to familiesthat have an autistic member.The siblings of the autistic family member expressedstrong feelings with regard to their lack of privacy. Theirinability to own and cherish items symbolizing theiruniqueness was an important issue. This need and its lackof fulfillment should be considered as a significant issuewhen working with these individuals. The needs of eachmember to be connected yet separate from all other membersrepresent boundary issues which may be at risk in familieswith autistic members.A further implication of this study is thatencouragement of social support groups can be a facilitatingfactor for the siblings of autistic children. The uniqueexperience of living with a sibling with autism, as well as122the fact of being an adolescent appeared to be dual reasonsfor social networking providing an effective environment inwhich to admit feelings and to gain insight into their totalfamily relationship. Additionally, the strength of thesocial network can also provide a helpful milieu to learntechniques for handling problems which may arise wheninteracting with their sibling with autism.A third implication of this study is the need forestablishing clear open communication within the familyregarding the difficult as well as the more routine aspectsof living with an autistic member. In the cases studied,there was a range of experiences expressed. From atherapeutic perspective it is not the event of living withan autistic sibling that may be damaging to an individual.Rather it is the perception of the event. It is importantto explore and validate the perceptions of the individualsand their experiences. Parents may need to be helped tohear and validate the feelings and experiences of theirchildren in order for them to feel strong and real.Misunderstandings regarding discipline, parent involvement,or responsibilities are all possible topics on which parentsand children need to speak directly and clearly to oneanother. Similarly, how each family member is dealing withthe difficult behaviors of the autistic member should beexplored.123A further implication of this study is the need forcreative approaches to facilitate the acquisition of theextraordinary level of family support services thesefamilies require. The families need to be helped torestructure responsibilities and to obtain outside resourcesin order to facilitate the family needs. Each of thesiblings in this study commented upon their inability topartake in normal family outings as well as vacationopportunities as a consequence of living with a brother orsister with autism. Free time shared amongst the non-autistic family members is limited by the availability ofoutside respite and day-care facilities. Professionalsworking with these families need to become advocates for thedevelopment and acquisition of such services.Implications for Future Research. Research regarding all aspects of families withautistic members is needed. This research can provideeffective insights from the perspective of each of thefamily members and can offer approaches for helping thesefamilies.Specifically research is needed in the area of siblingexperiences and response to living with a brother or sisterwith autism. There is a lack of information concerning howyoung people react to this experience and how they areimpacted by it. These studies are needed to broaden the124knowledge gained from this study and hopefully an effectivemodel can be developed that will assist in working withthese families.Patterns of interaction over the long term could leadto valuable insights as to how these individuals perceivethemselves over time and how they internalize theirexperiences. This study focussed on siblings in theiradolescent phase of development. Their perceptions of theirexperiences may well differ if examined at some later timesuch as early adulthood.Another intriguing aspect of the sibling experiencesmight be to examine patterns that are set when dealing withintrusiveness of the autistic sibling. This topic was astrong expression for two of the participants of this studyand may well be an indication of a worthwhile area offurther study.The participants in this study were all from highlyfunctional families. It would be meaningful to expand theknowledge through examining the experiences of siblings infamilies that are not functioning as well as the ones inthis study.Research into generational differences in response to afamily member with autism could also help fill the gaps inour knowledge of families with an autistic member. Fromprevious research we know a little about the responses of125mothers and much less about the responses of fathers. Thisinformation could prove useful to provide professionalservice and support to these families.Currently there is a lack of knowledge of how familieswith autistic members differ from families with normalmembers. Family processes and patterns need to beidentified and compared. Our understanding of thesefamilies remains incomplete and creates an obstacle toeffective intervention.A further concern for the professional assistingfamilies of children with autism is to determine whether thefeelings of embarrassment, helplessness, and fear are beinginternalized into feelings of low self esteem. Is this theexperience by which the sibling is defining him or herselfor are they momentary or incident related experiences withwhich the sibling is learning to cope?Summary A case study approach was used to examine and describethe breadth of experiences of growing up in a family where abrother or sister has autism. The experiences of thesiblings, their emotional responses, and their copingmethods were be studied. This was an exploratoryinvestigation in light of the rarity of research; an attemptto try to describe something of the significance of theexperiences of these siblings.126The participants were three adolescents who had livedwith siblings with autism for a minimum of ten years. Theseparticipants were from stable two parent families. Theywere selected in an opportunistic manner through initialidentification by the Pacific Association for AutisticCitizens.A portrait was developed capturing the experiences ofeach of the participants from the personal interviews withthe participants and their parents. These portraits werethen validated by the participants as well as expertauthorities involved in the counselling profession.The portraits developed support the view that livingwith a sibling who has autism is a varied and diverse set ofexperiences. Some of the experiences expressed showedsimilarities such as the expression of need for privacy bytwo of the participants. Other similarities included thefeelings of loss associated with not being able to takevacations or freely go on family outings. However, on thewhole, the experiences varied greatly.It would appear that the experiences of each sibling ofgrowing up with an autistic member in the family is bestunderstood in their own context. Some of the elements ofthis context that assist us in appreciating andunderstanding these experiences include: the characteristicsof the child with autism, the scope of the family resources,127and their means of utilizing them. In general theexperiences of these participants indicated that there werecommon issues of responsibility, restrictions, and privacyand that they had developed ways of accepting theircircumstances and accommodating their sibling with autism.As there does not appear to be an adequate theoreticalmodel for dealing with siblings of family members withautism, further research is needed to fill this gap. Fromthis study, it was evident that living with a sibling whohas autism raises the issues of responsibility,restrictions, and privacy, all of which have the potentialfor limiting individual differentiation and increasingfusion within the family. Therefore the Murray Bowenconcept of differentiation may prove to be one of the morerelevant theoretical concepts for work in this area.The practical implications of this study include theneed to develop and facilitate the access to outsideresources for these families, the need to facilitate theestablishment of clear family communications, the potentialbenefit to facilitating social support networks, and thepotential benefit to facilitating privacy and a separatespace for the siblings of the family members with autism.128ReferencesBeavers, J., Hampson, R. B., Hulgus, Y. F., & Beavers, W. R.(1986). Coping in families with a retarded child. FamilyProcess, 25(3), 365-378.Bettelheim, B. (1979). The empty fortress. New York, NY:Free Press.Borg, W. 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Case study research: Design and methods.Beverly Hills, CA: Sage.134Appendix A - Letter of IntroductionDear 	I am in the process of writing a proposal for a Mastersthesis in the Department of Counseling Psychology at theUniversity of British Columbia. My topic is siblingadjustment to significant disability. I will be doingqualitative research using a case study approach. I plan toexplore the range of effects on family members, especiallysiblings, resulting from their experiences and relationshipswith their significantly disabled family member.Specifically I plan to explore the nature of the copingstrategies that family members develop in order to deal withthe presence of autism in their family. I am writing torequest your participation in recruiting participants for myresearch project.I would like to interview non-disabled family members,(mothers, fathers and siblings) focussing upon the day-to-day impact of having a brother or sister with autism. Iplan to study variations in sibling perceptions andresponses to the presence of autism. The participants willbe at least twelve years of age and will have lived withtheir disabled brother or sister for at least five years.If possible the participants will be from two parentfamilies with no recent family trauma such as divorce orseparation.I will conduct an in depth interview with eachparticipant. The focus of the interview will be on eachsibling's experience and perception of the meaning ofdisability in their life and how it has impacted their placein the family, school, and relationships. Open-endedquestions will be employed to focus on the sibling'sexperience, feelings and thoughts relevant to the meaning ofa disabled brother or sister in their life.During my initial contact with each family,arrangements will be made to hold the interview at amutually agreed upon private location and time. This couldbe a quiet room in their home. At present I anticipaterequiring approximately 3 hours in total with each family.The primary interview will take appropriately one and onehalf hours. If extra time is required through the need orrequest of the family this time will be made available.135If more than one interview is needed, a secondinterview will be scheduled at the earliest convenience ofthe family participant. A compacted time-frame will ensurethat participants can share their experience without majorbreaks between interviews.Please be aware that all interviews will be audio-taped. In order to ensure participant confidentiality, thedata will be accessible only to myself and my thesissupervisor, Dr John Allan (229-4625). All tapes will beerased at the conclusion of the study. Participants' namesand identifying information will be omitted from alltranscript materials. Participants will be identified bypseudonyms only.Please be aware that all participants will be informedthat withdrawal from the project or the decision not toanswer any specific questions will be honored, respected andcomplied with immediately.At present the information we have on the effects onfamily life and on individuals of growing up with asignificantly handicapped sibling, is contradictory andtherefore misleading. There is even less information onautism and the coping mechanisms used by family members.This study will shed light on an as yet unexplored areaspecifically the impact of growing up with an autisticbrother or sister. Information gained from this study mayhave broad therapeutic implications for families of thesignificantly handicapped. This information will beespecially relevant for health care professionals andfamily members who deal with autism on an on-going basis andwhose goal is to serve the needs of the whole family system.Enclosed are copies of this letter to be distributedto prospective participants. Also enclosed is a summarysheet outlining the purpose, objectives, procedures andsubjects selection criteria of the research project. Thesemay be of help when providing relevant information toprospective participants.If you have clients who would be available for andinterested in participating in this study, please contact meat (926-9625). I will contact you by telephoneapproximately five days after delivering this letter ofrequest. This is simply to ensure that you received thisletter and to answer any questions you may have. Pleasefeel free to call me at the above number.136Thank you very much for your time and anticipatedcooperation.Sincerely,Shirley JensenI have a B.A. and a teaching certificate as well as aDiploma in Special Education. I have taught children withlearning and behavior disorders as well as regular classesin elementary school math and language arts for the NorthVancouver School District. I have been a special Educationconsultant for two year for the Gibson's School Boardhelping primarily with their visually impaired and multi-handicapped children and families. Last year I co-led agroup for abused children and did one workshop for mothersof abused children for the Batter Women's Support Services.My degree in counseling is in the family specialty.I Have two children aged nine and twelve. I have hadlimited vision throughout my life. As a member of a specialneeds family I would like the literature to more fullyunderstand and address the needs of all family members indealing with the unique circumstance of living day-to-daywith profound special needs.137Appendix B - Summary SheetTitleA Phenomenological Study of Growing Up With A SeverelyHandicapped Sibling.ResearcherShirley Jensen. Former Special Education teacher andconsultant with 9 years experience dealing with specialneeds families.Present research project is for M.A. thesis at U.B.C.in counseling Psychology.Purpose and ObjectivesTo explore the nature of the experience of growing upwith an autistic brother or sister.The interviews will focus upon the sibling's experienceand perception of the impact of autism in their day-to-daylife.To explore and determine the dynamics that affect themeanings placed upon the experience as viewed by the siblingof an autistic child.Subject Suitability CriteriaTwelve years old and over siblings of Autisticchildren.Have lived with their disabled sibling for at lest 5years.ProcedureIn depth interviews will be conducted with eachparticipant focusing upon sibling's varied feelings,perception and thoughts about the experience of having anautistic brother or sister.At a mutually agreed upon private location.Length and number of sessions will be dependent uponparticipant's needs for comfort. Researcher does notanticipate she will require more than three hours of totaltime with each participant.All interviews will be audio taped.138ParticipationAll participation is volunteer.Withdrawal from the project or decision not to answerspecific questions will be honored.After being contacted by social worker, if client isinterested in participating in study, they will contact theresearcher AS SOON AS POSSIBLE by telephone (926_9625).All participants will be asked to sign a consent form.A copy of the consent form will be given to eachparticipant.ConfidentialityContents of audio-tapes will be utilized only for thepurposes of the present study.Data will be accessible only to researcher and hersupervisor Dr. John Allan (228_4625)All identifying information will be omitted fromtranscripts. Participants will be identified by pseudonymsonly.All tapes will be erased after transcription.BenefitsParticipants may gain a deeper understanding of thedynamics of living with an autistic brother or sister.Participants may gain a broader appreciation of some ofthe unusual opportunities as well as problems of living withautism.With greater self-knowledge often comes greater selfacceptance. It is hoped that participants will gain adeeper sense of self and thus a more enhanced appreciationof self.The literature will be broadened to include informationabout the experiences of family members and theirperceptions feelings and experience of day-to-day life withan autistic family member.139Appendix C - Consent FormApril 15, 1991Dear Participant.I am writing as a follow-up to your conversation withNatalia Bouvier from The Pacific Association for AutisticCitizens regarding your participation in my research. I amconducting a study to explore the range of effects onsiblings of growing up in a family where there is a childwith a significant handicap. This research is beingconducted as a Master's degree Thesis at the University ofBritish Columbia. The focus of the research will be on theperspective and experience of the non-handicapped brothersand sisters.Your participation will involve meeting with me toengage in a dialogue regarding the range of effects ofliving with a sibling with a significant handicap. I wouldthen interview the sibling(s) separately with the aim ofallowing him/her to express him/herself in an uninhibitedmanner. Interestingly siblings have rarely spoken forthemselves. Descriptions of siblings in families with aspecial needs child have been based largely on theobservations and interpretations of either the parents orthe health professionals.I do not anticipate needing more than 3 hours of yourtime. If more time is required to comfortably tell yourstory, I will make the time available. I will schedule asecond interview if one is needed. It will be necessary tohold the second interview as near to the first as possibleso as not to distract or interfere with the flow of thestory. All efforts will be made to find a setting which iscomfortable, convenient and private.The interview(s) will be audio-taped. The audio-tapeddata will be transcribed onto a disc on my personalcomputer. The audio-tape will then be immediately erased.All names and any identifying information will be omittedfrom the transcripts. The interview data will be accessibleonly to myself and my thesis supervisor, Dr. John Allan who140is a professor in the Department of Counselling Psychologyat U.B.C. He can be reached at 228-4625. The data will notbe used for any purpose outside the present researchproject.Your participation in my research project is purelyvoluntary. You are under no obligation to participate andare free to withdraw from the study at any time. If youchoose to withdraw from the study or decide not to answerspecific questions, your wishes will be immediatelyrespected, honored and complied with. 	 If you do not wishto participate or choose to withdraw from the study for anyreason whatever, this will not jeopardize your relationshipwith the Pacific Association for Autistic Citizens. If youagree to participate, please sign two copies of this letterof consent. You will keep one copy of the consent form andI will keep the other. If you have any questions orconcerns about this procedure, please feel free to contactme at the number below. If you agree to participate in myresearch project, please sign your name below.Yours sincerely,Shirley Jensen926-9625I have read this form and consent to participate inthis study. I understand that my participation is voluntaryand that I am free to withdraw from the project at any time.Date 	 NamePhone 	 SignatureI consent 	 )I do not consent) to my child participating in thisstudy.Guardian or Parent SignatureI acknowledge receipt of the signed participationconsent form.Researcher's signature.


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