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July 2006 |
Quarterly Research Issue: siblingsMessage from the Presidentby Peter Gerhardt, Ed.D.A recent cover story of Time magazine (7/10/06) focused on, “how your siblings make you who you are” and went on to discuss new research on the potent influence siblings exert on our development. Growing up, many of us lived in families where we had at least one or more siblings and their impact on our lives, both then and now, is undeniable. The relationships we have with our siblings are both the longest lasting familial relationship we will have and, for the most part,somewhat idiosyncratic in thatany number of variables (parents, chronological age of self and sibling(s), friends, outside interests, etc.) may impact that relationship. But what happens when the sibling in question has autism? How different would that relationship be? This edition of The OARacle looks at the lives ofsiblings ofbrothers or sisters with autism through their own eyes andprovides a taste of whatresearch tells us in terms of sibling relationships, accommodation, and emotional well-being. You may find some of what we note surprising and hopefully, encouraging; some fairly "commonsensical"; but all of it well worth discussing. FEATure Article: Growing Up with a Brother with Autism: An Interview with Melissa BasileBy David Celiberti, Ph.D., BCBA(This interview originally appeared in Volume 22, Issue 2 of the ABA & ABCT Special Interest Group Newsletter in the spring of 2006). First and foremost, I want to thank you for taking the time to participate in this interview. I find it so informative to talk with siblings in their 20’s as they often provide such a multi-layered account of growing up with a brother or sister with autism. We appreciate your willingness to share to share your experiences and look forward to hearing what you have to say. When did you first notice that your brother was different? What stood out for you? I don’t remember there being any one instance where I noticed that my brother was “different.” That was always just the way it was. I was only five years old when my brother was diagnosed so any behavior that he exhibited seemed “normal” to me at that age because I had no frame of reference to which to compare him. I guess I picked up the fact that he was “different” indirectly from my parents. I would hear conversations between my parents concerning my brother, so I came to understand that he was “different” by accepting and believing what I heard from them. Of course, as I got older, I came to better understand what made him “different.” I would compare him to myself, seeing that he could not always do the same things that I could do. What are some of your more memorable childhood experiences with your brother, both positive and not so positive? Some of my most memorable positive experiences would have to be when our babysitters would come over and take us out. We would go to the park, out to eat, shopping, etc. I really enjoyed this because we were able to do fun activities together. Some of the “not so positive” experiences involved my friends, particularly anytime my friends would come over and my brother would “act up.” Many times my play dates had to be cut short because of my brother’s behaviors. It sounds like despite some challenges here and there, you had many gratifying times as well. What was the hardest part for you? What was the most rewarding part for you? Having a sibling with autism is very difficult no matter how you look at it. On a very frequent basis you are confronted with conflicting feelings. I loved my brother but hated how it affected my family and then felt guilty about how I was feeling. For me the hardest part was the fact that my brother received much more attention then I did. At times, I felt very left out and didn’t understand why I was treated this way. The only explanation that made sense to me at the time was that my parents loved my brother more then they loved me. This made me very angry because I didn’t understand what I did to make my parents act this way. There are also things that siblings come to realize about their family that can be very hard to accept. I came to realize at a very young age that my parents were not invincible and did not always have all the answers. This was a very uncomfortable feeling and often made me feel unprotected, vulnerable and scared. Being surrounded by grown-up issues all the time, I was forced to grow up really fast. While my friends were thinking about playing, at a very young age I remember being concerned whether my brother would get to school without having a tantrum on the bus, or if he received his last dose of medication at the right time, etc. Instead of only filling the role of a sister I took on a parental role, which was a lot to handle as a young child. Although it is a very different and sometimes very difficult way of growing up, in retrospect, I now see the rewarding side. I am who I am because of my brother. He has taught me kindness, patience for others, and unconditional love. He has taught me life lessons that I am just starting to realize and if I grew up any other way I am not sure that if I would be the same person. If I was asked when I was younger what it was like to have a brother with autism, I may have expressed something very negative. However, now I see that although it was, and still is, very difficult to have a sibling with autism, the good outweighs the bad. I have a great relationship with my brother and I cherish this so much. When we become adults, many of us look back and appreciate how hard it is to parent a child, particularly a child with autism. But, when we are young, we really do seem to put our parents on a pedestal, expect them to always be strong, never get sick, always be there, and so on. I really appreciate your ability to provide a voice to the experiences of a young sibling recognizing the fallibility of these people called our parents. It was also very touching to hear how the relationship with your brother has unfolded and evolved over the years. Earlier you made mention of play dates with friends, how did you communicate to your friends that your brother was different? How did your friends respond? Do you recall questions or comments made by your friends? I was very secretive about my brother’s disability so not many of my friends knew that I had a brother with autism. In fact, I wouldn’t tell them anything until they met him and figured it out for themselves. I never came out and said “my brother has autism” to anyone. Even after my friends met my brother they only really knew that he was “different”. I guess I was afraid that if I said these words, “my brother has autism”, that it would make it too real. I was also very afraid that my friends would feel sorry for me, or not want to be friends with me any more if they knew ahead of time. When I was asked questions I was worried that the other person would not understand and be judgmental. I was also a little embarrassed at times because I knew I was different from them in this way. I tried to avoid talking about it all costs. I actually never lost friends because of my brother’s disability. I think my friends sensed that I was uncomfortable with the subject and never made me focus on it too long. When someone asked me question I would answer with a quick, vague answer and then change the subject. I usually didn’t receive any more questions after that. Sometimes, I think my friends probably were more comfortable with the idea of my brother having autism then I was. And other times I seriously wondered if they were just as uncomfortable or scared as I was. Actually, up until a few years ago, I still had a problem telling friends about my brother’s disability. Even when I would bring friends home from high school and college I wouldn’t tell them anything until they met him, and some of my friends never knew. I’m not sure when it became less scary for me to talk about it but now I have no problem telling people I have a brother with autism. I guess now I feel that it is my duty as a sibling with a brother with autism to inform and educate others about the disability and how it affects families. I heard other siblings describe the same concerns. When we are young, what our friends think of us and our families can become so incredibly important. Those worries can become even more intensified when we are adolescents. Aside from sibling support groups, were you able to reach out to other siblings as you were growing up? I never reached out to anyone to discuss my brother’s disability and its effect on my family. I didn’t know anyone who I felt would understand. When I was about ten years old I wrote a short letter to a newsletter dedicated to siblings who have brothers and sisters with disabilities. As a result, I received many responses from other siblings. I had over 12 pen pals who, to some degree, understood what I was going through. We never directly talked about issues we faced as siblings, however, the fact that they understood me due to their own similar experiences was very comforting. Just the idea that there were other people in similar situations made me feel like I was not alone. What was your recollection of being involved in a sibling support group? What is a helpful experience? If so, how? I really enjoyed being in the sibling support group. It made me feel special to be in this “club” that not everyone could join. It was good for me because I didn’t have to share my feelings, however, if I wanted to I would be surrounded by people who would listen and actually understand. Sharing was my decision and my choice, which for someone who felt like she had little control over things was very important. I think the most beneficial thing about the support group was that no one was forced to reveal anything they weren’t comfortable with. We would do fun activities, and even though we all had a common thread between us, it was place where we didn’t have to think or talk about our brothers and sisters with autism for a little bit, it was about us. I think you raise a very important point and I quickly learned that very lesson running sibling groups as a graduate student. As sibling group facilitators, we would sometimes worry so much about the content that we would lose sight of one of the most salient benefits of such groups – to give siblings the chance to realize that they are not alone and that there are others out there. We have spent a good bit of time talking about the past. Have you participated in decisions about your sibling’s future? Yes. When I was about 16 years old, right before my parents created their will, they discussed with me my brother’s future and what part I would play. We discussed it again when they filed for guardianship a year ago. As my parents get older, I know that I will play a vital part in caring for my brother now as well as when they are no longer with us. How do you see your future relationship with your sibling? Now that we are both adults, I have a wonderful relationship with my brother. I see this continuing. I also know that in the future my role will change in his life. I will become more of a caregiver to him. I will have to make difficult decisions regarding his living arrangements, medical issues, etc. Now, looking back, is there anything else that could have been done or said that would have been helpful to you? I’m not sure how receptive I would have been to anyone trying to help me better understand my situation. How do you convince a child who doesn’t receive sufficient attention that it’s not their fault? How do you convince that same child that everything is going to be ok when they see their parents cry out of desperation on a daily basis? I’m not sure anyone who is not a sibling themselves knows anything about what it is like. Because I didn’t have a role model in my life that actually had a brother or sister with a disability, anything that anyone could have said to me probably would have fallen on deaf ears. Knowing what you know now, what advice would you give to a young sibling of a child with autism? What advice might you offer a parent in how best to meet the needs of brothers and sisters of children with autism? I’m not sure siblings want advice as much as they want the comfort of being around someone who understands what they are going through. Someone they can share “war stories” with if they choose to do so. Someone who can say, “Oh, I’ve been there”. Or even someone they know just understanding without a word having to be spoken. I think it is very important for younger siblings to see that older siblings have gone through similar experiences, have had similar hard times, and struggle in understanding it all yet they’ve survived and are better for it. I think this is the most important thing that needs to come across to younger siblings with brothers and sisters with autism. My best advice for parents would be to listen to your child. What they need or want may not come across in words but in actions. For example, I never out and out told my parents I needed attention but I definitely acted out enough to get my message across. Siblings need to feel special. They need to know their wants and needs are just as important. Setting aside time just for that sibling, where their needs can be directly met, is extremely important. Another suggestion that I think is important for parents to realize is that a lot of issues that surround the child with autism are grown-up issues and above the heads of their other “typical” children. I think it’s important to discuss these issues in private as much as possible to ensure that no added and unneeded stress is put on these siblings. However, I also think that it’s important for siblings to understand the disability in a more general sense. I think this can be achieved if there is an open dialogue between the parents and children in which questions can be asked and answered in a comfortable manner. You make many wonderful suggestions. Let’s turn our attention away from the family for a moment. How can programs and agencies best support siblings of children with autism? I think agencies can support siblings best by understanding what they need. I think one way to achieve this would be to institute mentoring programs between older and younger siblings. This way, younger siblings have a place to take questions and express their feelings (if they choose to do so) to someone who has lived what they are living. I also think providing siblings with a forum or message boards to write to each other is another good idea for siblings who may not know any other siblings in person. I think activities for siblings only such as trips, groups and projects are important as well. These give individuals, who are similarly connected in one way, a group to fit into and place to express themselves in a comfortable environment. I think that agencies should also provide parents with counseling to help them better relate to their “typical” children. In the way of counseling I think agencies should also provide help to siblings to guide them in how to relate to their brother or sister with autism as well as give them techniques to use in different types of situations they may encounter. In my opinion, someone who has done extensive research into the sibling community or siblings themselves should do this. Finally I think that agencies should also provide services for older siblings. This would include guidance in making life decisions for their siblings with autism, discussion groups, and forums. Conducting a needs assessment and creating opportunities for more experienced siblings to reach out to younger siblings are both wonderful suggestions. Melissa, thank you so much for your very thoughtful account of growing up with a brother with autism. I appreciate your honesty in sharing the perspective of a sister and framing these experiences in a new light as a young adult. I am sure others will be touched by your experiences and hopefully energized to rethink how they support siblings in the families for whom they provide services. Your brother is lucky to have you!
research update: Adolescents and Adults with Autism Spectrum Disordersby Peter Gerhardt, Ed.D.
With the recognized increase in diagnosis of autism spectrum disorders (ASD) we would expect to find a proportional increase in the number of siblings of individuals on the spectrum. To date, research findings into the status and needs of these siblings have been inconsistent and, at times, even contradictory. A primary reason for these often confusing findings may lie in the difficulty of controlling for the myriad variables that differentially define families both with and without a child with ASD. Summaries of three more recent studies are presented below:
ARTICLE ONE: Kaminsky, L., Dewey, D. (2002). Psychosocial adjustment in siblings of children with autism. Journal of Child Psychology and Psychiatry. 43, 225-232. Summary: Kaminsky and Dewey investigated the psychosocial adjustment of siblings of children with ASD and its relationship to feelings of loneliness, social support, gender, and family size when compared to siblings of children with Down Syndrome (DS) and siblings of neurotypical (NT) children. In total, 90 siblings between the ages of 8-18 years participated in the study with each group containing equal numbers of males and females. Psychosocial adjustment was measured using a variety of standardized measures including the Achenbach Child Behavior Checklist (1991), the Social Support Scale for Children (Harter, 1985), the Loneliness and Social Dissatisfaction Questionnaire (Asher, Hymel, & Renshaw, 1885), an adaptation of the Vineland Adaptive Behavior Scale (Sparrow, et al, 1984), and a non-standardized questionnaire regarding family demographics. In brief, the results indicated that “siblings of children with autism are not at inflated risk for adjustment difficulties or loneliness.” (p. 213). While this particular finding may be contrary to some earlier outcomes (and, to some extent, conventional wisdom), the authors hypothesize the reported, high rates of attendance of study participants at family support groups may account for the difference. Attendance, they speculated, may have provided study siblings with greater access both to accurate information and other siblings of children with ASD, thereby supporting more positive adjustment and decreasing loneliness. Additional findings indicated that, as a group, siblings of children with autism did not display measurable deficits in social competence. Of interest, however, is that sisters in this group had the highest social competence scores whereas brothers had the lowest. Lastly, the author’s reported that positive psychosocial adjustment among siblings of children with autism was associated with higher numbers of children in the family. Potential explanations for this finding are discussed and include having a larger number of siblings may result in higher levels of social support being present and a broader sharing of within-family responsibilities. A limitation to a more generalized interpretation of these results lies in the fact that the majority of siblings in the study (80 percent) was older than the child with autism and, therefore, these results apply most directly to that group of siblings. In brief, however, it does appear that with generally available social supports siblings of children with ASD may adapt significantly better than otherwise expected. ARTICLE TWO: Pilowsky, T., Yirmiya, N., Shalev, R.S., Gross-Tsur, V. (2003). Language abilities of siblings of children with autism. Journal of Child Psychology and Psychiatry. 44, 914-925. Summary: Given the recognized body of literature supporting a genetic component in autism spectrum disorder, the question posed in this study was whether the language abilities of siblings of children with autism might serve as behavioral markers of an even broader autism phenotype. To that end, siblings of children with autism were compared to those of siblings of children with a primary diagnosis of either mental retardation (MR) or developmental language disorders (DLD). A total of 72 NT siblings, 16 years of age or younger, participated. Groups were matched by sibling’s age, gender, birth order, ethnicity and family income, among other variables. Language abilities were assessed using several standardized measures including Wechsler Intelligence Scale for Children, 3rd Ed. (Wechsler, 1991); the Clinical Evaluation of Language Fundamentals, 3rd Ed. (Semel, et al, 1995); and the Pragmatic Rating Scale (Landa, et al, 1992). In addition, the parents or primary caregivers were asked to complete the Child Behavior Checklist (Achenbach, 1991) along with providing a comprehensive family history and demographic information. The results indicated that the language abilities of siblings of children with autism were within normal limits and did not significantly differ from those of the other sibling cohorts. While these findings are important (and somewhat comforting), the authors note that they represent a somewhat narrow assessment of abilities and that a more “wide-ranging neuropsychological screening procedure with carefully chosen control groups” (p. 923) targeting other, atypical cognitive features may result in different outcomes. That research remains to be done. ARTICLE THREE: Pilowsky, T., Yirmiya, N., Doppelt, O., Gross-Tsur, V., & Shalev, R., (2004). Social and emotional adjustment of siblings of children with autism. Journal of Child Psychology and Psychiatry. 45, 855-865. Summary: In this study the investigators sought to assess the social and emotional adjustment of siblings of learners with ASD in comparison to siblings of learners with a primary diagnosis of either mental retardation (MR) or developmental language disorders (DLD). These two diagnoses were specifically chosen to help control for the potential impact of the genetic aspect of ASD. The autism siblings group consisted of 30 individuals (12 males/18 females/22 families) and was compared to a group of 28 siblings (16 males/12 females/13 families) of a child with MR and 30 siblings (14 males/16 females/16 families) of a child with DLD. Groups were matched by the gender of the sibling with a disability and the neurotypical sibling’s gender, age, and family size, among other variables. Social and emotional adjustment was measured using a number of standardized assessments including the Weinberger Adjustment Inventory (Weinberger, 1996), the Social Domain of the Vineland Adaptive Behavior Scale (Sparrow, et al, 1984) and the Child Behavior Checklist (Achenbach, 1991) in addition to the coding and analysis of videotaped interviews with the siblings. A total of 14 siblings across all three groups received clinical diagnoses as a result of the assessment process. However there were no differences is diagnosis between any of the groups. On measures of socialization skills and behavior problems, “most of the siblings of children with autism (86.7%) were found to be well functioning [suggesting] that most siblings of children with autism are reasonable well adjusted.” (p. 861) The authors go on to note that larger family size was associated with some delay in sibling socialization skills and that this is contrary to the findings of other researchers (including the previously reviewed article.) Possible explanations for this surprising result are discussed. Limitations of the study are discussed and include the absence of normative comparison group and the importance of exploring additional aspects of sibling relationships beyond those assessed here. Overall this is a positive finding, particularly in light of the myriad of challenges associated with being a sibling of someone on the spectrum. However, as the authors note, it is critical that such positive findings not allow for the neglect of those siblings for whom adjustment might not be as positive or for those for whom, at different points in their lives, may find their sibling status difficult. Perspective: Jackby Jim JacobsohnMy older brother Jack, who is autistic, turned 40 earlier this year. When we were younger it seemed like much more than our 10 year age difference that separated the two of us. As a small child I remember noticing that Jack acted differently than my older sisters. In so many ways Jack wanted to do the same things I did – go to the pool, the beach, a spring training baseball game, and enjoy the Florida sun after a long New Jersey winter. But he was unable to grasp certain rules and social nuances as quickly as we all did. My discovery and understanding of Jack came in a number of phases over the course of several years. Every spring our family jumped in the station wagon and drove to visit my grandmother in Florida. We had this family tradition that each person in the car got to pick a tape – we used a rotation by age. In a moment of brilliance by my parents, in order to eliminate complaints from any of their four children, they created the rule that if anyone complained about another person’s musical choice, they would lose their next turn. I still think my dad instituted this so nobody would complain about his classical music, but I distinctly remember wondering why Jack chose the same tape every single one of his turns both down and back from Florida. None of the rest of us did that. At the time this frustrated me, but looking back that frustration resulted from my lack of understanding his condition. What’s more exciting to a child than opening Christmas presents? Every year I had to contain myself during the pre-opening build up and was always befuddled by the fact that my parents let Jack open his Christmas presents before any of the rest of us. Maybe that says more about whom I was as a small child. But in my early years, I could not help but notice that Jack was different and received special treatment. He once got away with peanut buttering the dog one time – something for which I would have been reprimanded. While this confused and frustrated me, it also made me curious. Around Christmas one year I clearly remember sitting on my bunk bed asking my mother what was wrong with Jack. She attempted to explain autism but only confused me more. Today, it’s almost impossible to miss autism in the news. The disorder is on the cover of major news magazines, featured on television news, in movies, and even on sports channels and websites. Twenty-five years ago it was quite different. My mother struggled to fully explain why Jack acted the way he did. Looking back, however, I cannot blame her. Today’s autism community deserves an incredible amount of credit for helping America understand exactly what autism is and what it entails. As I grew older, I started spending more time with Jack when he was home, doing puzzles, watching sports on television, playing games, and writing out his schedule on his chalkboard. While I was trying my hardest to learn arithmetic and memorize American history, Jack was spitting out the entire NFL schedule and each week’s TV Guide after only glancing through it once. I also believe Jack figured out the pattern of the games on The Price is Right because I can’t remember a time he didn’t correctly predict what game was coming up next. He then went from perplexing to fascinating in my young mind. Around this time, I remember getting very upset that my brother would never be “normal.” Certainly, none of us can define normal, especially not a child in early grade school, but I realized that my friends at school didn’t say “This is CBS” 30 times in a row and couldn’t tell me if it rained on this day ten years ago. Jack did and could. Once I got past the “normal issue,” however, I learned to truly care for my brother. The puzzles and sports continued, but our conversations improved. I learned how to talk to Jack, make him comfortable, and let him be himself. I became proud of my brother rather than just curious and concerned about his habits. I joined the Board of OAR with a mission to contribute to the autism community only recently. I am somewhat of an enigma in the autism community because I’m a sibling of an adult with autism rather than a parent or grandparent. I admire the efforts of all of the incredibly caring parents I have met or read about, but I always urge parents to think about how to talk to their other children about autism. When you’re a child, people who are different are frequently picked on or alienated. I believe that parents, despite the often overwhelming feeling of having a child with autism, can significantly help their child with autism by creating a strong family unit of support through education. Few things make me happier than watching Jack keep score at a baseball game with a smile on his face or when our mom makes one of his favorite meals. I admire the close relationships many of my friends have with their brothers, but I can’t imagine being prouder of Jack than I am today. And besides, none of my friends’ brothers could tell me who the Philadelphia Eagles are playing on the third Sunday of next November. Jim Jacobsohn is a member of the OAR Board of Directors, who lives and works in Chicago, Il. Research Article: Being the Sibling of a Person with ASDby Mary Jane Weiss, Ph.D.Siblinghood Unlike many other relationships, the sibling connection is usually life-long. Siblings can be a source of great solace, as they remember and share our history. Since siblings are our first real partners in life, being a sibling is part of how we define ourselves from very early on. The bond itself is affected by age difference, and in general the sibling bond becomes more reciprocal in middle childhood. In adolescence, the importance of the sibling bond diminishes a bit, as peers become more prominent. But later in adulthood, the sibling bond again becomes important, especially as siblings help one another cope with parental illness and death. When there is a disability, the sibling bond is altered in several important ways, which have been summarized elsewhere (e.g., Feiges & Weiss, 2004; Harris & Glasberg, 2003). In early childhood; a sibling might perceive parental stress, disruption in family life, and/or inequity in attention. As the sibling’s awareness of the disability is solidified, siblings need to adjust to the information. In general, sisters are more affected and older children tend to fare better. Closeness in age to the sibling with a disability is often associated with more struggles. Uniqueness of an ASD When the disability is an ASD, the sibling experience may be especially difficult (e. g., Feiges & Weiss, 2004; Harris & Glasberg, 2003). Behavioral difficulties may increase fear or avoidance, and unpredictability of outbursts can reduce family activities and spontaneity. It may also be more difficult for the sibling to establish a close emotional bond with their ASD sibling, especially if the individual with an ASD is not as socially engaged. Research has shown that parents of such siblings generally overestimate their child’s understanding of the disability. There is a gap between “telling” and “understanding,” and a sibling may be able to describe the disability without fully comprehending it. Families should ensure that the information presented is developmentally appropriate, assess whether the child has truly understood the content, and revisit the issue often. Young children can be told that the sibling has simply not yet mastered skills, can be offered reassurance (especially of safety), and can be helped to have more effective and successful interactions with their sibling with autism (e. g., through training). By middle childhood (age 9 or so), most children can begin to assimilate information about the nature of the problem (e.g., a problem in the brain). It may be necessary to clarify their role in behavioral escalations or to give more information about how the sibling with an ASD is working to overcome their problems. Siblings of children with autism may experience a feeling of difference, especially from peers. For example, they may also feel unease or discomfort at not being able to relax at home or in public, if behavioral difficulties are significant. The reality is that their experience is different from those of other children. It is helpful to foster an environment in which it is acceptable to express negative feelings. Reasons for optimism Many parents fear that their children are negatively impacted by their sibling experience. However, there is much reason for optimism. In general, siblings of children with disabilities have good self-efficacy, say positive things about their siblings, and may be more nurturing as a result of their experiences. Having a good factual understanding of the disability is associated with positive adaptation. In addition, a number of family variables seem to help insulate the learner. These include good support, open communication, and effective problem solving. The interview project What follows from here is a description of themes and experiences reported by twenty siblings of individuals with autism who were interviewed for the book, Sibling Stories: Growing up with a brother or sister on the autism spectrum (Feiges & Weiss, 2004). These individuals commented on their emotional experiences, on how their families coped with stress, and on how the experience had changed them, including in positive ways. Roles Many siblings we spoke to did express the inevitability of increased responsibility. In some cases, they felt responsible for the sibling in specific ways, such as performing certain caretaking chores. Sometimes, this was very much desired, as they enjoyed being a helper to the sibling and to the family in this context. At times, however, siblings felt that the responsibilities given were excessive or otherwise interfered with having a more balanced relationship with their sibling. In addition to caretaking responsibility, some siblings felt a responsibility that was more emotional in nature. They may have felt responsible for their parents’ emotional well-being or for the family’s well-being in general. Some expressed the feeling that they needed to succeed in an exceptional way, to counter their sibling’s inability to do so. “One thing I struggle with today is that I feel more like a mother than I do a sister. I think my relationship with Rick is very complex because I feel like a mother, sister, therapist, friend, nurse. That becomes extremely emotional. I am always helping him with something.” Many siblings expressed fulfillment in finding a niche as their sibling’s mentor. In some cases, they taught a life skill to their sibling (e.g., playing a card game, riding the bus, balancing a checkbook). In other cases, they simply modeled appropriate behavior in a specific realm, such as healthy eating choices. To the extent that such endeavors were tied to their sibling’s interests and preferences, success was often great. This strategy also facilitated increasing the positive social interactions that the siblings experienced. Level of Involvement Level of involvement was a difficult issue for many interviewees, as it was fraught with expectation, guilt, and in some cases, remorse. Some siblings found it helpful to be involved in a specific and proactive way, such as helping to plan for their sibling’s future. Working with their parents in this regard also helped ease the transfer of roles in this realm, aiding both generations to adapt to necessary role changes. Many siblings felt pulled to care for their sibling and pushed to plan for their own life. Sometimes these two needs and wishes were at odds, such as when career or personal opportunities arose in a distant state. Balancing guilt and entitlement was a formidable process for many of those we interviewed, and, for some, remained a constant struggle. Many siblings were comforted in finding a type of involvement as an adult that was important, even if it occurred from afar, such as serving as guardian, being the contact person for updates about the individual’s progress in their educational/vocational program, or helping with estate planning. “What followed was a period of years in which I took over more of the responsibility for Emma because I felt if I didn’t she would fall through the cracks. My parents had stopped. I went to therapy. I was angry. I was too scared. I unloaded everything on the therapist, and the place I ended up was that if I didn’t come to terms with my sister, nothing else in my life would ever work. I knew that was a fact that went deeper than worrying about the responsibility or thinking this was unfair. This had to do with central questions of identification for me. This was mine: it was my sister and this was about me. I didn’t have to pick her up – many people would have walked away. That choice was mine. So I chose to build a relationship with my sister and I know I did the right thing. I could not have lived with myself otherwise. “ Personal relationships In a few instances, siblings described patterns of excessive caretaking that occurred outside of their families, as they engaged in personal relationships with very troubled persons. Some siblings reported that they needed to reduce their tendency to take care of others in all instances, and to seek a healthier, more reciprocal balance in their personal friendships and romantic relationships. “I definitely dated and still date people I need to fix. I lock into somebody, and I think, if I work hard enough, they can be fixed.” “I am usually the caretaker in personal relationships. Whenever I am with my friends, I tend to be the one talking about responsibility and the one that’s there to listen and help with my friend’s problems.” Positive aspects As in the literature on this topic, it is easy to get lost in the negative content of the interviews. One might walk away remembering all of the heartache and struggle that these siblings described about their own families and about their own struggles to find a role and a relationship that felt comfortable and productive. In fact, though, the interviews tell a much more complex and nuanced story. Siblings also described increased strength, compassion, and acceptance. Many described a sense of mission, as in being drawn to the helping professions. These individuals found a sense of purposefulness in reaching out to and serving others. “What it has given me is that I can listen to clients (as a social worker) for hours and hours because I’m used to waiting! I’m patient and interested. When I got my master’s in social work, a friend commented to me that when I was born, they didn’t say, “it’s a girl,” they said, “It’s a social worker!” I was born to heal and do family therapy. “My parents have taught me incredible values about taking care of people, and whether it is Joseph or a homeless man – there’s this ethical value that it is our obligation and also our honor to take care of the downtrodden. Because of this I have been given the wonderful profession of therapist that comes totally naturally and makes me feel that I have a purpose in life. It has made me a better person to be forced to see someone else’s needs first.” Others described an increased commitment to family. They viewed the adversity experienced as strengthening and solidifying their family, and as increasing their commitment to each member of their family of origin. They also described a commitment to advocating for their loved one. “Chris has brought us closer in a way you can’t describe. He’s the focus of our family, basically, in terms of how we think. He’s the glue and he’s shaped how my sister and I think and act. “ Many siblings expressed tremendous joy and pride in their sibling. They appreciated their hard-won achievements, and their special qualities. “Todd contributes so much to the family…..His best characteristic is his personality. He is almost always smiling or laughing……. I love Todd very much and he is one of, if not the most, cherished relationship in my life.” Perhaps most importantly, they viewed themselves as less judgmental, more open, and more patient as a result of being a sibling of someone with autism. “I am a much more patient person than most of my friends. Also, I am not as prejudiced and a lot more open-minded.” “Chris has given me a broader perspective. I can relate to different people and he has taught me to be more accepting.” Summary What does it mean to have a sibling with an ASD? From the interviews we conducted, we can say it means having a different kind of life. It means coping with powerful negative emotions at times. It means becoming strong, compassionate, and tolerant. Despite the fact that being a sibling of a person with an ASD is not a chosen role, it is a role in which many find great inspiration, meaning, and happiness. Dr. Mary Jane Weiss is the Director of Research and Training at Douglass Developmental Disabilities Center as well as a Research Associate Professor at Rutgers University in New Jersey. (For more information about the interviews): Feiges, L. S. & Weiss, M. J (2004). Sibling stories: Growing up with a brother or sister on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Company. (For more information about siblings): Harris, S. L. & Glasberg, B. (2003). Siblings of children with autism: A guide for families. Bethesda, MD: Woodbine House. In Memoriam: Eric Schopler, Ph.D., 1927-2006On July 7, 2006, Dr. Eric Schopler, an internationally renowned authority on the diagnosis and treatment of autism spectrum disorders, died at his home outside Mebane, NC, after a courageous battle with cancer. He was 79.
Dr. Schopler revolutionized treatment for children and adults with autism through an extraordinary career that began in the early 1960s and continued up until his recent death. The success of his research into appropriate and effective interventions for both children with autism and their parents led the State of North Carolina to establish the Division for the Treatment and Education of Autistic and related Communication-handicapped Children (TEACCH), the first state-funded program for the treatment of children with autism, in 1971. The program’s innovative approach to autism intervention has influenced autism treatment worldwide ever since. In the weeks since his passing his obituary and the details of his distinguished career have been widely circulated. They speak for themselves. Between the lines of that impressive history, one catches a glimpse of a man of dignity, intelligence and great love for his family, friends and those individuals on the spectrum he worked so hard to serve. While he is already sorely missed, his work and his legacy live on in the many program and people he has touched.
Scientific Council Welcomes Two New MembersOAR is proud to announce the addition of Michael Alessandri, Ph.D., and Mary Jane Weiss, Ph.D., as the newest members of OAR’s Scientific Council. The Council is comprised of leading autism and medical professionals and serves in an advisory capacity to the Board of Directors for all OAR matters concerning issues of research and OAR’s research-based information programs. Its primary role is to review all applications for research funding each year and recommend the most outstanding to the OAR Board for review and approval. “Over the years both Dr. Alessandri and Dr. Weiss have made significant contributions to the field, and we are truly honored to have two such impressive professionals willing to join us in the mission of OAR”, said OAR President Dr. Peter Gerhardt. Dr. Alessandri is currently the Director of the University of Miami-Nova Southeastern University Center for Autism and Related Disabilities (UM-NSU CARD), as well as a Clinical Associate Professor of Psychology at the University of Miami. He has worked with individuals with autism and their families for the past 25 years and previously served on the Board of Directors of the National Alliance for Autism Research. A Phi Beta Kappa graduate of the University of Rochester in New York, Dr. Alessandri has presented, consulted and published internationally on developing appropriate and effective educational programs for students with ASD. His work has taken him to Italy, Switzerland, Brazil, Dominican Republic, Panama, Barbados, Bahamas, Taiwan, Australia, and throughout the United States. He has also received several awards within the field of autism and disabilities such as the Autism Society of America Special Recognition Award for Publications in 1993, and the Outstanding Faculty award given by the SJSU Disability Resource Center for instruction of university students with disabilities in 1995. Under Dr. Alessandri’s direction, UM-NSU CARD was named the National Autism Program of the Year in 1999 by the Autism Society of America. In 2003, Dr. Alessandri received the Wendy F. Miller ASA National Recognition Award for Autism Professional of the Year. Dr. Weiss is the Director of Research and Training at the Douglass Developmental Disabilities Center and an Associate Research Professor at Rutgers, the State University of New Jersey. She received her Ph.D. in Clinical Psychology from the Rutgers University Graduate School of Applied and Professional Psychology in 1990, and became a Board Certified Behavior Analyst in 2000. Dr. Weiss is also a regular presenter at regional, national, and international conferences on topics relevant to ABA and autism. She has written numerous articles and three books on autism, including Right from the start: Behavioral Intervention for young children with autism (co-authored with Sandra Harris, 1998), Reaching out, joining in: Teaching social skills to young children with autism (co-authored with Sandra Harris, 2001), and Sibling stories: Reflections on life with a brother or sister on the autism spectrum (co-authored with Lynne Stern Feiges, 2004). “[Drs. Alessandri’s and Weiss’] expertise and dedication will add significantly to an already impressive roster of professionals on the OAR Scientific Council,” said Dr. Gerhardt. “We are thrilled that they have both agreed to be a part of OAR.” Attention Researchers: OAR Grants to Exceed $450,000 in 2007OAR published the details for its 2007 applied research program this month, and the funding plan calls for more than $450,000 in new research grants between the annual Applied Research Competition and the Graduate Research Grants Program next year. OAR conducts two open grant competitions annually to select studies for funding in autism research. Both competitions are intended to promote research in the analysis, evaluation, or comparison of assessment or treatment models, focusing on aspects of early education, behavioral, or communication intervention and adult issues such as continuing education, employment, housing models and “later intervention.” In keeping with OAR’s mission, the goal of this sponsored research is to promote studies that yield practical and clearly objective results that contribute to enhanced quality of life for people with autism and provide evidence-based information for use by parents, families, and service providers. Applied Research Competition View the 2007 Applied Research Competition RFP Graduate Research Grants Program View the 2007 Graduate Research Grants RFP For questions or more information, please visit OAR’s Website, or contact Sara Pelikan, the Research Program Coordinator, at OAR. Fourth Annual Applied Autism REsearch and Intervention ConferenceRegistration is now open for the fourth annual Applied Autism Research and Intervention Conference to be held at the Hilton Towers in Arlington, VA, on Friday, October 27, and Saturday, October 28, 2006. OAR has organized the conference around four tracks. The first day will include presentations in the Research and Research to Practice tracks. Saturday’s presentations will be divided into tracks focusing on Academic Instruction and Speech and Language. Both BCBA and ASHA credits will be available. To view the full schedule and more detailed information and register, please visit http://www.researchautism.org. For questions, please contact the Conference Coordinator, Sara Pelikan, 703-243-9717, spelikan@researchautism.org. Volunteers. OAR utilizes a number of volunteers in support of the Conference and waives the registration fee for volunteers. Please contact Sara Pelikan directly or e-mail conference@researchautism.org, if you would like to volunteer for either or both days. |
