Siblings & Autism

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Internet Resources

I find "Adam's world" to be the most intriguing of anyone in our family or any of my friends. This is not to say I love him any more than the rest of my siblings or my parents, but his interaction with others is more fascinating than most people I have met without autism.
Max Wolfond
The proposed study examines psychological well-being and sibling relationships in adolescent siblings who have a brother or sister with an autism spectrum disorder (ASD).
Gale Orsmond
Aunt Blabby is introduced to siblings by having them answer letters written by other siblings and offer advice to Aunt Blabby about how she could advise the children.
Derenda Timmons Schubert
Each sibling's reaction to a sister or brother with autism will be slightly different depending upon his or her age and developmental level. I have seen a multitude of responses in my own son including apparent indifference, acceptance, resentment, embarrassment, anger and jealousy, all at different times in his life.
Created by Tiphanie, a 12 year old girl, living in Dallas, to share her understanding of autism.
Analysis of variables predicting sibling behavioral adjustment revealed that boys with siblings who have autism, and also those younger than their sibling with autism, engaged in fewer prosocial behaviors.
Patricia Howlin
Title article; Connecting Siblings; Life With A Sibling With Special Needs: An Ever-Changing Process; Consider This! Tips for Parents; Consider This! Tips for Sibs from Sibs
Lawrence is not a person behind bars. He is someone willing to step on the dangerous soil, to ask the difficult question, to try to dance, and his life, and the memoirs of that recount lives like his, all ask us to do the same.
Debra L. Cumberland
Sibling perception of differential treatment, whether toward themselves or their handicapped sibling, was not associated with low warmth in the sibling relationship.
Lucille Wolf
It is widely accepted that genes play a role in the etiology of autism. Evidence for this derives, in part, from twin data. However, despite converging evidence from gene-mapping studies, aspects of the genetic contribution remain obscure. In a sample of families selected because each had exactly two affected sibs, we observed a remarkably high proportion of affected twin pairs, both MZ and DZ. Of 166 affected sib pairs, 30 (12 MZ, 17 DZ, and 1 of unknown zygosity) were twin pairs. Deviation from expected values was statistically significant (P<10-6 for all twins); in a similarly ascertained sample of individuals with type I diabetes, there was no deviation from expected values. We demonstrate that to ascribe the excess of twins with autism solely to ascertainment bias would require very large ascertainment factors; for example, affected twin pairs would need to be, on average, sim10 times more likely to be ascertained than affected nontwin sib pairs (or 7 times more likely if "stoppage" plays a role). Either risk factors (related to twinning or to fetal development) or other factors (genetic or nongenetic) in the parents may contribute to autism.
David A. Greenberg et al
Generally 6-10 year olds were very positive in their attitudes and saw siblings with autism as needing love and caring for. Some 10-13 year olds were less positive and more aware of the impact of autism upon their family and themselves.
Geoff Evans
Siblings of children with chronic illnesses and developmental disabilities are two to three times more likely than their peers to experience psychological adjustment problems. Young children in particular are at high risk for experiencing these kinds of problems. To address this concern, a report published in the December 2005 issue of the Journal of Pediatric Psychology finds that family-based group intervention can help improve the self-confidence and knowledge of young siblings (ages 4 to 7) of children with special needs. "We found that participating in a group with other young siblings and parents of children with disabilities was both educational, therapeutic, and fun," says lead author Debra Lobato, PhD, with the Bradley Hasbro Children's Research Center (BHCRC) and Brown Medical School. The authors explain that within their families, well siblings may experience extra caregiver burden, differential treatment, and an imbalance of family resources. Outside their families, siblings may experience limited access to information about the child's condition, negative peer reactions, and disruptions in social activities.
Many adult siblings indicate that they feel more independent, dependable, compassionate and tolerant of others as a result of coping with mental illness. Some report that the family experience of mental illness leads them to re-think the importance of life events, develop a healthy perspective, and value meaningful and long lasting relationships with others.
Thomas C. Jewell
In this letter, I have suggested another explanation for the observed excess of twin pairs among affected sibling pairs; that it is simply the effect of ascertaining pairs of affected siblings. Is multiple birth an important risk factor for autism? The data presented by Greenberg et al. and Betancur et al. do not allow the testing of this hypothesis. A population-based study, in which the incidence of autism among MZ twins, DZ twins, and nontwin siblings is estimated should clarify this important issue.
Peter M. Visscher
There is consistent evidence from twin and family studies implicating genetic factors in the etiology of autism (MIM 209850), but no specific genes associated with autism have yet been identified. In a recent article in the Journal, Greenberg et al. (2001) reported a striking excess of twin pairs, both MZ and DZ, in the cohort of families with at least two siblings with autism or autism-related conditions recruited by the Autism Resource Exchange (AGRE) of the Cure Autism Now (CAN) Foundation. The proportion of twins among autistic sib pairs (18%, 30/166) was significantly higher than the expected twinning rate per sib pair (2.4%). Greenberg et al. (2001) demonstrated that to ascribe this excess of twins with autism to a sampling bias would require very large ascertainment factors, which seem unlikely. These findings suggest that being a twin represents a risk factor for autism, and they have important implications for the etiology of autism. However, as Greenberg et al. (2001) pointed out, these results need to be replicated in other data sets. We report here a similar excess of twins in a sample of affected sib pairs recruited by the Paris Autism Research International Sibpair (PARIS) study.
Catalina Betancur et al
Here, we don't have to explain why we keep the matches hidden or why it is so loud loud LOUD all the time. These are the stories told from behind the door. They are your stories and mine.
Jordan Aiken
I have learned to NEVER yell or raise my voice at Steven. I tell him that I love him every day. I encourage him to do things with me. I always stick up for him, no matter what. I now know that Steven loves me very much.
Tamara Leszner
Advice includes: Increase other family interactions; meet the social and educational needs of the other children; avoid undue physical and emotional pressures on siblings; explain and discuss the nature of autism; involve the other children in treatment.
Patricia Howlin
Significantly more adjustment problems are found in the siblings of PDD children at both times when compared with siblings of DS and control children.
Sandra Fisman et al
If parents are not putting the burden of looking after the affected child on the normal sibling, and are positive about the autistic child in general, then the sibling can be helped to lead a normal and an eventful life with their affected sibling.
Swapna Thampi Nair
The reason Trenton is my leader is because he taught me not to judge people by their appearance, but to look deep inside, and there may be an incredibly wonderful person inside. For all these reasons and more, I love my brother.
Jayme Suess, Exceptional Parent
Autism is considered by many to be the most strongly genetically influenced multifactorial childhood psychiatric disorder. In the absence of any known gene or genes, the main support for this is derived from family and twin studies. Two recent studies (Greenberg et al. 2001; Betancur et al. 2002) suggested that the twinning process itself is an important risk factor in the development of autism. If true, this would have major consequences for the interpretation of twin studies. Both studies compared the number of affected twin pairs among affected sib pairs to expected values in two separate samples of multiplex families and reported a substantial and significant excess of twin pairs. Using data from our epidemiological study in Western Australia, we investigated the possibility of an increased rate of autism in twins. All children born between 1980 and 1995 with autism, Asperger syndrome, or pervasive developmental disorder not otherwise specified (PDD-NOS) were ascertained. Of the 465 children with a diagnosis, 14 were twin births (rate 30.0/1,000) compared to 9,640 children of multiple births out of a total of 386,637 births in Western Australia between 1980 and 1995 (twin rate weighted to number of children with autism or PDD per year 26.3/1,000). These data clearly do not support twinning as a substantial risk factor in the etiology of autism. We demonstrate that the high proportion of twins found in affected-sib-pair studies can be adequately explained by the high ratio of concordance rates in monozygotic (MZ) twins versus siblings and the distribution of family size in the population studied. Our results are in agreement with those of two similar studies by Croen et al. (2002) in California and Hultman et al. (2002) in Sweden.
Joachim Hallmayer et al
Siblings are presented with Opportunities for personal growth and character development. Research has shown that siblings possess maturity, self-concept, social competence, insight, tolerance, pride and loyalty.
Derenda Timmons Schubert
As we raise our children with autism, it is important that we raise our other children to handle the verbal insults of people when they feel the need to ridicule a disabled person.
Adelle Jameson Tilton
Some people are just too ignorant to look past the surface. My brother is a wonderful person. He's extremely bright. People who give him a chance focus intently on him when he speaks. He has important things to say.
Nicole H.
The importance of this unique situation is that it may offer specific insights about the stresses of this challenge and the resiliency of families who cope successfully.
Marsha Mailick Seltzer, Marty Wyngaarden Krauss
Although considerable research exists concerning families raising children with disabilities, relatively little work has examined the linkages between parent and sibling functioning. The purpose of this study, therefore, was to investigate the relationship between parental perceptions of family functioning and school-aged siblings' social skills and problem behaviors. A purposive sample of 78 sets of parents and their school-aged children participated. Half of the families were raising a child with a disability, and half of the families were not raising a child with a disability. Mothers and fathers completed the Porter-O'Leary Scale and Bloom's Family Functioning Measure. Teachers of the school-aged children completed a modification of the Gresham and Elliot Social Skills Rating System. Results indicated siblings of both groups demonstrate more social skills than problem behaviors, and siblings of children with disabilities were higher in cooperation and self-control than siblings of children without disabilities. Hierarchical regression analyses revealed fathers' perceptions of family conflict and external locus of control orientation, and mothers' perceptions of marital conflict predicted externalizing behaviors for female siblings of children with a disability.
Barbara Mandleco et al
The following articles, books, and other resources provide a sampling of materials which describe and support the experiences of siblings of children with autism spectrum disorders.
Marci Wheeler, Eli Siegal
This section offers suggestions to parents about ways to help the other children in the family cope gracefully and effectively with the experience of having a brother or sister with autism.
Educate your children; balance time spent with children; open discussion; sibling groups.
Derenda Timmons Schubert
A national program dedicated to the interests of brothers and sisters of people with special health and developmental needs. Based at Children's Hospital and Regional Medical Center in Seattle, Washington.
Seeks to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parents' and providers' understanding of sibling issues.
Subjective feedback offered overwhelming support in favor of both the sibling support group and the social skills group.
Jennifer Diane Hetzke
Problems for younger people who have a sibling with autism can include teasing from other children, lack of privacy, disruption of home life and a feeling of resentment that the whole focus of the family is always on the autistic member.
National Autistic Society
It can be helpful to have contact with other siblings who can understand the good and not so good things you might feel about having a brother or sister with special needs.
The extent of current and future involvement by siblings of adults with disabilities is a function of the demands and constraints of midlife as well as the degree of closeness with the family of origin. The findings highlight the importance of clinicians' work to support and strengthen family relationships, which loom large in determining the extent to which siblings are involved in the care of a brother or sister with disabilities.
Jan S. Greenberg et al
One concerns the extent to which the siblings of children with autism pose more problems needing professional attention than other children, and the other aspect is to what extent their sibling's autism influences what they think about and worry about.
Sandra Harris, Alison Martin
In the United States, over 5.8 million children have disabilities. Most have brothers and sisters. Throughout their lives, these brothers and sisters will share many—if not most—of the same concerns that parents of children with special needs experience, as well as issues that are uniquely theirs. These concerns are well known to their parents and have been documented in the research and clinical literature. Among the concerns mentioned by authors, parents, and siblings themselves include: feelings of isolation, guilt, resentment, perceived pressure to achieve, increased caregiving demands, and concerns about their role in their sibling's future.
ERIC
The purpose of this paper was to present an overview of the literature and to evaluate the data, regarding sibling relationships between siblings with and without disabilities. A dynamic continuum has existed in the relationship between brothers and sisters, dependent upon differences within families and individuals and their respective level of development. Variables, such as age, gender, severity of the disability, family size and income, parental attitude and adjustment, and cultural and religious ideology interact and combine to produce multiple family responses to children with disabilities.
Marsha L. Moore, Vicki Howard, T. F. McLaughlin
One thing that sometimes helps is for parents to explain that that they expect the same amount of difficulty for each child where difficulty is measured by how difficult something is for the child, not the end result.
Meredith Warshaw
This site features a U.S. Map that you can locate sibling support groups on.
The adjustment of siblings of children with autism is in sharp contrast to the severe social and emotional disabilities characteristic of autism, and is noteworthy considering the stress involved in having a sibling with autism.
Tammy Pilowsky et al
Using the Social Responsiveness Scale, the investigators assessed autistic characteristics of 100 boys with autistic disorder, Asperger's disorder, or pervasive developmental disorder (PDD) not otherwise specified. All subjects were 4 to 18 years of age and had a brother without any PDD who underwent the same assessment. Some of the subjects came from families with more than 1 PDD-diagnosed child. About half as many boys with non-PDD psychiatric diagnoses, each with a brother without mental illness, were drawn from the same clinic to serve as control subjects. The Social Responsiveness Scale relies on parent and teacher reports and provides a numerical score; higher scores indicate more autistic impairment. The brothers of boys with any PDD had higher scores than the brothers of children with other psychiatric diagnoses. In addition, the brothers of children from families with multiple PDD diagnoses had the highest scores (P < .000001 compared with controls).
Randall F. White, Medscape
Brothers and sisters will be in the lives of family members with disabilities longer than ANYONE else. Throughout their lives, brothers and sisters share many of the concerns that parents of children with disabilities experience. These concerns include isolation, a need for information, guilt, concerns about the future and care-giving demands. Brothers and sisters also face issues that are uniquely theirs including resentment, peer issues, embarrassment, and pressure to achieve.
Minnesota Technical Assistance for Family Support
Recently I've been looking on the net for websites about autism, but I couldn't really find one for a sibling, by a sibling. That's what I'm trying to do now and I hope this page helps you.
My brothers' lives can only be authentically lived by ignoring societal norms and following without apology their own inclinations.
Barrett L. Dorko
Director's Note: In the early 90's, I set out to do what families fear the most -- to tell the world, in my case through a video documentary, our most protected secret. "Well, you've certainly dropped a bombshell," my mother said, after a long pause, when I told her my intention. The secret was my brother, Alan, who in 1950 was born with striking blue eyes and a brain so severely damaged he would never develop the ability to speak. Alan became a secret suddenly. In 1958, he was sent to live in Letchworth Village, a state-run institution for people with mental retardation. And after that day, almost all mention of him within the home virtually ceased. "An honest, tender, must-see documentary for anyone who cares about people with significant cognitive disabilities and their families, Without Apology tells a tale once lived by thousands but until now revealed by few.. By focusing on the emotional struggles that she and her own parents endured when, desperate for services, they sent her brother Alan to an institution, Susan Hamovitch reveals one family's experience in the days when solutions were scarce and shame was plentiful.. The result is a heart-rendering gem of history, biography, and self-reflection and the triumph of truth over secrets." : Rachel Simon, author, Riding the Bus with My Sister.
Susan Hamovitch

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