Dr. Joshua John Diehl of the LOGAN Center, a Center for Social Concerns resource that focuses on supporting people with disabilities, visited Spes Unica Hall at Saint Mary’s on Friday for the first of several colloquiums about autism-related topics this year. The event was sponsored by the Saint Mary’s Master of Autism Studies program.
Diehl discussed the impact an autism diagnosis for one child can have on families of the child — especially for siblings. As evidence, Diehl cited his own experiences with his brother, Shane, and his research from working with siblings at the LOGAN Center.
“A lot of the previous research [is] on how having an autistic sibling can lead to behavioral issues,” Diehl said. “It’s all clinical. There’s not a lot on the actual relationship between siblings, which is unfortunate because the relationships can be beautiful and they’re a lot more complex than just what could go wrong.”
Shane, Diehl’s younger brother, has a developmental disability, Diehl said.
“Shane is my inspiration,” he said. “He has trouble communicating, but we know him. He’s his own person, he loves the Wisconsin Badgers and has a great sense of humor.”
Diehl said he has explained his struggles with describing Shane to friends. It is a struggle many siblings face, he said, when pondering whether to lead descriptions with the disability and all that it entails, or by describing the person who enjoys jokes and planning his or her own birthday party.
“There is also a level of consciousness in public and at home most siblings have that others don’t,” Diehl said. “It’s the stigma of how your sibling acts, and the fact that they are different from your friends’ siblings of the same age.”
Diehl said he felt he needed to take care of Shane as a child. He promised his mother he would take care of his brother and did all he could to include Shane while growing up, but it became difficult later in life when Diehl went away for college and began to build his own family.
Now, Diehl said, Shane is doing well. He has a job and lives in a home with his friends. However, Diehl’s research shows many siblings possess that uncertainty about the future and the need to help their parents and sibling without being a burden.
“A lot of siblings feel the need to only emphasize the good side of their relationship with an autistic brother or sister,” Diehl said. “They just refuse to talk negatively about them. The problem is, any sibling relationship, developmental disability or otherwise, has its ups and downs. We must be willing to discuss all aspects of the relationship, good and bad.”
Not talking about issues can be a problem, Diehl said.
“Siblings often have trouble talking to parents and peers about their own issues,” he said. “There is a stigma around it and although many siblings have a strong desire to talk about it with someone who understands, they just don’t have the opportunity.”
The most important relationship in early childhood is that of siblings, Diehl asserted, and children who have developmentally-delayed siblings should be able to create and maintain those relationships without sacrificing their own desires.
Diehl acknowledged there are also difficulties for parents — they have a tendency to compare siblings or describe their children based on whether or not they have a disability.
“The most important thing is that parents are aware of how they sound and what they say,” Diehl said. “They need to make their children aware that they are open to listening, discussion and to take advantage of any opportunity to talk.”
