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Adults with ASDs: My brother's (sister's) keeper

Teresa J. Foden
IAN Assistant Editor
Kennedy Krieger Institute

Date First Published: August 20, 2008

The sibling relationship of childhood undergoes major transformation during adulthood. No longer is the relationship somewhat insulated within the family. The demands of adult life—moving away from home, pursuing further education or entering the workforce, or possibly taking on the responsibilities of starting a new family—can loosen the sibling bond. The number of contacts between siblings may dwindle, with brothers and sisters perhaps keeping in touch via telephone and e-mail and getting together in person only occasionally during family functions. The days of childhood, when about 40 minutes of every hour were spent together, 1  are gone.

Prior to the early 1980s, it was the rare researcher who focused on sibling relationships in families caring for individuals with disabilities, and many years later, knowledge in this area remains limited. 2  Even while research into the effects of autism spectrum disorder (ASD) on siblings during childhood has grown, there has not been a corresponding growth in studies focusing on teens and adults whose brother or sister has autism. 3  What happens to these ties when siblings head off in different life directions? How does this bond differ, if at all, from that of typically developing siblings? How can the strengths of the relationship be fostered by the family and supported by the community? What is the strength of this relationship over time, especially as parents age and siblings potentially face the prospect of caring for their brother or sister with autism?

Questions like these are at the forefront of current autism research and advocacy efforts. As the number of children diagnosed with ASD increases, 4 and as these children grow up, there is a greater focus on adult issues. In the United States, for example, organizations such as Autism Speaks and the Autism Society of America are including adults on their advocacy agenda.
On the research side, the IAN Project will soon launch a series of questionnaires for adults with ASD, which will help capture information about their experiences. U.S. data on adults with autism are nearly nonexistent, making it difficult for advocates to demonstrate needs and fight for change. We hope that the IAN “Adult with ASD” questionnaires will help arm advocates with this crucial data, and we are optimistic that the quality of life will improve for adults with ASD and their families in the coming years.

One of the autism research strategies to build knowledge of how the relationship between siblings changes over time is to compare the bond between adult siblings who have a brother or sister with an ASD with those who have a brother or sister with Down’s syndrome. Families with these two disorders are often compared in studies of autism, partly because children with Down’s syndrome tend to have the clear advantage in the very area where children with ASD have the disadvantage: social skills. 5 

Traditionally, many of these studies show that the bond between siblings of children with autism tends to be less intimate than between the siblings of children with Down’s. 6 But research during recent decades has produced results that are not cut-and-dried. According to a 1986 study, for example, during childhood and early adolescence some siblings of children with autism reported a weak bond, but others reported a strong bond. 7

Like most human relationships, the sibling bond is complex. In a book published nearly 20 years after this study, Autism Spectrum Disorders: Identification, Education, and Treatment, author Dianne Berkell Zager wrote, “[L]iving closely and intensively with a sibling with a disability can be both rewarding and stressful. On the positive side, many siblings report satisfaction in learning to live and cope with the demands of a child with a disability in the family, resulting in feelings of warmth and compassion for all individuals with unique needs.” 8

As researchers of a 2007 study of 154 adult siblings of individuals with ASD or Down’s syndrome put it: “[T]he stresses that affect families of children with ASD may have long-lasting, but not necessarily only negative, effects.”  9

These same researchers, in a different study published that same year, reported on a genetic influence that could play a role in how the sibling bonds develop in families with a history of ASD: the “broad autism phenotype.”  10  BAP, as it is abbreviated, describes a set of genetic, mild autism-like characteristics that seem to cluster in many families of individuals with ASD. These characteristics can include social impairments, language deficits, difficulties with facial recognition, and other autism-like traits. 11  Like other family members, typically developing siblings may inherit a tendency to develop some of these traits.

According to the study of 154 adult siblings, BAP characteristics in typically developing siblings may undermine the overall sibling relationship (and may also help explain the lower levels of marriage and parenthood in some siblings of individuals with ASD). In addition, these researchers said, siblings of adults with ASD reported less satisfaction with the sibling relationship, as well as more pessimism about their sibling’s future, than siblings of adults with Down’s syndrome. However, the relationship tended to be more positive when the typically developing sibling used problem solving as a primary coping mechanism (in contrast to coping skills based on avoiding or emotionalizing issues, problem solving tends to directly address issues). In addition, the relationship tended to be closer when the brother or sister with ASD was able to manage at least somewhat independently.

Another study conducted in 2007, 12  this one of 460 siblings of adults with ASD or Down’s syndrome, came out with an interesting finding, with implications for the time when siblings may be called upon to become more involved in the care of an adult with a disability. In the ASD group, the sibling relationship tended to be most distant when the individual with autism was aged 45 or older—right about the time when aging parents may be less able to care for the adult with autism.

The state of the sibling bond during later adulthood is a key research area. In the future, according to a 2005 study, 13  researchers need to look beyond the potential negative factors of this relationship and focus on positive factors as well, such as the development of healthy social behavior and empathy.

“…[W]e have only a limited understanding of the extent to which siblings are involved in their brother or sister’s lives, and whether or not they are positioned to take on increased caregiving responsibilities as their parents age….” according to a study two years later involving two of the same researchers. 14

To further the understanding of the role siblings continue to play is of key importance when we consider that many adults with autism, even those who achieve some degree of independence, will need ongoing community and family support throughout their lives. 15 16


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