The month of April is set aside for addressing autism spectrum disorder (ASD), a term used to describe a group of complex disorders in brain development. However, ASD doesn’t just affect the individual diagnosed as being “on the spectrum" — it touches their entire family. While these individuals themselves and their parents may have the aid of their doctors and therapists, there’s one faction of the family that often falls between the cracks: The siblings.

The Center for Disease Control and Prevention estimate that one in 68 children in the U.S. is identified with ASD, a figure that varies considerably from state to state. For example, around one in 175 children in Alabama are identified with ASD, while in New Jersey the figure is closer to one in 45.

Autism is characterized by many intellectual and physical difficulties, as well as a handful of health issues; in fact the possible ways in which autism could manifest is what prompted experts to refer to it as a spectrum of disorders. Siblings of ASD individuals often have behaviors and feelings that stem from being brother or sister to someone with autism. For example, according to Autism.org, younger people who have a sibling with ASD might experience teasing, a lack of privacy, and disruption of their home life. It’s not uncommon for them to harbor feelings of resentment toward their parents, who seem to always focus on the family member whose needs are greater because of their autism.

As the number of ASD children in the U.S. continues to rise, so does research on these unique children. But, as pointed out by Barbara Cain, a psychotherapist and author of The Invisible Cord: A Sibling’s Diary , in a 2012 article for TIME, although there had been several hundred studies conducted on ASD children, those focused on their siblings are few and far between.

Shaped By Their Upbringing

Childhood is but a moment in time within a lifetime, but this period can have one of the biggest influences on how we turn out as adults. Siblings of ASD individuals have a truly unique childhood and must learn from a very young age what it is like to take care of someone else. According to Cain, who in her career has worked with many ASD siblings, these experiences have a lasting effect.

ASD
ASD affects the entire family. AFP / Stringer- Getty

Cain told Medical Daily that one of the most salient traits she found from her various interviews with siblings of ASD children was outstanding altruism, the willingness to do acts of kindness without ever expecting anything in return — even to the point where it may be detrimental to themselves.

“These kids certainly knew how to sacrifice and did it automatically,” said Cain. “Pleasure is not part of their life. They only know self-sacrifice.”

This statement resonated with Eileen Garvin, an ASD sibling and author of How to Be A Sister: A Love Story with a Twist of Autism. She told Medical Daily that, as a result of always putting her sister before herself, she often failed to consider her own needs and desires.

“I believe it is important to understand your own needs to effectively take care of someone else,” said Garvin.

Garvin explained that the learning to put others first at such a young age helped her become more sensitive to other people’s differences. “I was inclined to notice other people — in public or social settings, who are different.”

This sensitivity to others is often common among siblings of ASD children, and according to Cain, ASD siblings’ ability to put their own needs secondary to someone else's needs means they often become trusted confidants by their friends.

“My mother tells me I was always the one to introduce myself to the shy kid or the new kid,” said Garvin. “My other siblings did the same thing. And I guess we still do.”

Beyond Childhood

Although siblings of ASD children may be forced to grow up faster than their peers, they often are able to cope with these difficulties. According to Cain, rather than become disobedient and prone to trouble, as many with difficult childhoods do, ASD siblings often take the opposite route.

siblings
Growing up with an ASD sibling gives you a unique perspective to life. Pixabay, Public Domain

“These siblings are certainly not going to go off the deep end and are not kids that are going to be on drugs or suffer from substance abuse,” said Cain. “They don’t want to make waves and will try to avoid any trouble.”

As a result, many grow into reliable adults who will often choose a helping profession, Time reported. Garvin told Medical Daily that she even credits her ASD sister as the inspiration for her becoming a writer.

“I spent a lot of time with her when we were children and she doesn’t talk very much,” said Garvin. “The ability to pay attention is important in the writing process...She’s made me value compassion and the importance of recognizing that many people look at the world in different ways.”

In addition, some of the most poignant memories for siblings of ASD individuals have to do with their sibling’s bullying, and Cain explains that for many the experiences can make them fierce anti-bullying advocates.

Researching the ASD siblings, beyond the genetics of the disorder, can not only help offer support to these individuals, but can also expand our understanding of people living with an ASD diagnosis.

“They are the ones from early on who could be the translator, could predict a meltdown, and shorten it if they had to,” said Cain. “If you interview siblings about the condition you can learn a lot from it. They are invaluable in terms of informants.”