How Autism Shapes Sibling Relationships | Spectrum


Stop being the father:

SSome autistic children require so much attention that their siblings get lost in the shuffle. “Their needs may be overlooked or need to take a back seat,” says Leedham. In a study published earlier this year, for example, a girl complained that her parents minimized his learning problems because they were minors compared to the challenges of his brother. As a result, she was not diagnosed with dyslexia until she was 12 years old.

Siblings of children with autism do best when they have people in their life – parents, extended family, coaches, teachers or friends – who listen and appreciate them and who they know they can count on. for help. Tomeny and her colleagues found that children with autistic siblings who want and receive support have relatively few emotional and behavioral problems. On the other hand, children who say they don’t get the support they need have more problems, such as anger outbursts or feelings of fear or worry.

One thing adults can do to support typical children is to help them understand that the difficult behaviors of an autistic sibling are a function of brain wiring. “Around the age of 6, my mom explained everything about autism to me,” says Luciana Heresi, an 11-year-old girl from Orange County, California, whose 13-year-old brother Santi has autism. His mother showed him videos which explained that some people with autism spoke about it repeatedly. special interests. “When I was younger, I was like, ‘He already told me this, he already told me that.’ I thought he was doing it on purpose just to bother me, “Luciana said.” But now that I know, I’m like ‘Oh, okay, I get it.’ Like, I can cope with it because I know he’s autistic.

According to experts, siblings should be allowed to calibrate the relationship and not, for example, be required to act as impromptu tutors, babysitters or rule enforcement officials. Brett Aurin says he sometimes keeps an eye on his twin brother, but his parents try not to lean on him too much for help. They even sometimes tease that he “has to stop being the father,” he says.

When siblings take on responsibility for a sibling by choice, experts say, they are much less likely to feel resentful than if they were forced to. By the time she was in high school, Diaz kept track of her brother Daniel’s prescriptions and took her to his doctor’s appointments, not the mall. “I didn’t do the things a kid usually would do, but I didn’t feel like I missed anything because I was there for every step with Daniel,” Diaz says. “Something in our bond has been magical. My name was his first word. His first steps were towards me.

Specialized support programs can also help siblings with their own moods and behaviors. the Sibling Support Project, for example, runs groups called Trade fairs in communities in the United States and abroad for children ages 8 to 13 who have a sibling with a disability. “It’s an outlet, a place where they can talk about their experience, their thoughts and their feelings,” Holl says. “You can feel very lonely if you don’t know other people who are going through similar situations.”

The experience of having an autistic sibling is complex. A child may regret that his brother’s behaviors make family vacations impossible, but also feel pride when he learns to tie shoelaces at the age of 13. “The sibling experience is really a mixed bag,” Holl says. “Not everything is great or terrible. It’s kind of all of the above at one point. Experts stress that no one should feel guilty for not having a good relationship with their autistic sibling. “A part of [the stories] are excellent, and some of them are not. All are equally valid, ”says Shivers.

“Something in our bond has been magical. My name was his first word. His first steps were towards me. Abigail Diaz

Whether the relationship is close or problematic, children tend to “take on” the sensitivities and strengths of their autistic siblings. In the 2019 Sisters’ Survey, a young girl moaned that her parents kept trying to get her autistic brother to eat foods he didn’t like, even though it predictably ended in a seizure of anger. And Holl recalls a Sunday morning workshop filled with sleepy teens who came to life around the issue of unequal expectations. Many complained cheerfully that their parents underestimated the capabilities of their siblings. “I know he can empty the dishwasher,” one boy said of his brother, “because when our parents are not at home I ask him to do it. In fact, he likes it!

In recent years, experts have also begun to examine these relationships from the other side, soliciting the voices of siblings with autism. This new research reveals that people with autism often don’t see anything unusual about their sibling relationships. Whatever problems a typical sibling may encounter, they are not always obvious to the autistic sibling. “Disabled and non-disabled siblings don’t always agree on what’s going on in their relationship,” says Meltzer, who has led much of this work. “And we didn’t really know that until we both started talking to each other.”

This disconnection happened for brothers AJ and Jarrett Link. Their parents divorced when they were young and AJ, who was diagnosed with autism as an adult, helped raise Jarrett, who is four years younger. Jarrett remembers the awkwardness and silences that troubled him as a child. After the diagnosis of AJ, who is now 30 years old, everything just made more sense. “That explained a lot of things,” says Jarrett, who now feels comfortable with his brother’s need for time alone.

For his part, AJ was unaware that awkwardness existed. “It’s weird to think of how for me it was just a normal experience,” he says. “But for [Jarrett], it was a different experience where he didn’t really understand what was going on. The brothers appreciate each other’s strengths. AJ admires Jarrett’s emotional support, and Jarrett says that AJ, who graduated from law school this year, is the smartest person he knows: “If I could just try and do some of the things that it does on an intellectual level, I would be very well off.

A similar loyalty inspired Michelle Byamugisha to contact Rudin, the TV meteorologist, on behalf of her brother during the pandemic. And within an hour of pressing send, a custom video arrival. “Hey Mark B, it’s Steve. I’m so happy to know that you’ve been watching me for over a decade, ”he began. “I know things are a little different right now because so much is changing in our world, but we’re all going to go through this together.” After more reassuring words, Rudin concluded with an invitation: “I hope that one day, when things get better, you and your sister can come and visit me here at the station. I would love it.

As Mark B watched Rudin’s message on his mother’s smartphone, his brother Jeremy filmed his quietly delighted reaction. Michelle posted this video on Twitter, where he has been viewed over 64,000 times.

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