A Life Apart: Parent Perspective on Living with a Child with Asperger’s

What Other Families Had to Say

Quotes from a study entitled, "Adolescents and Adults with Autism: A Study of Family Caregiving"

The study, conducted by Marty Wyngaarden Krauss, Ph.D. at the Heller School for Social Policy and Management at Brandeis University and Marsha Mailick Seltzer, Ph.D at the Waisman Center at University of Wisconsin – Madison, began in 1998. Researchers had previously examined the challenges of lifelong parenting among families of individuals with developmental disabilities. Several years ago, the researchers realized there was a gap in understanding of the impact on families with a child on the autism spectrum.

The multi-year project, which involves numerous interviews and questionnaires for the 405 participant families, includes families from both Wisconsin and Massachusetts.

Quotes are from the Principal Investigators’ series of reports, reprinted with permission.

“…Very stressful because you have to be on the top of your game dealing with his autistic tendencies.”
“First, I have been more involved with immediate family. Second, I have diverted myself from some career opportunities. Finable, I have been closer to my wife than I otherwise might have been. We have suffered the grief, etc. together.”
“…Because of her disability there is constant stress in our family. She is very obsessive-compulsive. Everything must be just right; if not, she can make us miserable. It’s like walking on eggshells at times.”

"We feel isolated because others cannot understand the problems of a home with an autistic son.”
“We have had no real impediments to social activity because of his behavior. Sometimes we have to withdraw from activities, but that is the exception, as some of it is because of my own reaction to the behavior more than the behavior itself.”

“We can’t go on family trips or visit without a great deal of stress of tension being involved so we tend to avoid doing it.”
“Most of our friends accept her as an individual. A Few people are concerned about setting her off.

“His ‘weirdness’ has become normal to people in this community. Outside, no.”

WHAT OTHER ADULT SIBLINGS HAVE TO SAY:

Families of 405 adolescents and adults, including me, have spent hours over the past few years answering questions, both in writing and in interviews. The researchers say there is little research on siblings in relation to how they have been affected by growing up with a sibling on the autism spectrum. With the researchers’ permission, here are some reflections from adult siblings with a brother or sister with an autism spectrum disorder. More than anything I have read, this illustrates the range of feelings, both positive and negative. And, as Drs. Kraus and Seltzer note in their summary: it provides some insight into the “stresses of this challenge and the resiliency of families who cope successfully.”

Siblings

“There were more everyday frustrations and more realization of life than you would expect at my age then.”

“Usually, when it came to most formal social occasions, only one parent would attend because the other would have to stay at home with my sister, i.e. school plays, ceremonies.”

“At times we could not do things other families have done. WE were forced to live by routines to accommodate my brother.”

“… In my opinion, my siblings and myself haven’t moved very far away in case our parents ever needed anyone to be there if something unforeseen happened.”
“…Because I had a lot of responsibility as a child I have become a responsible, loyal, even-tempered adult. However, I also worry a lot!”
“Having him in my life reminds me not to take my health, sanity or freedom for granted.”
“I have always been depressed an lonely.” I am not very confident.”
“… I refuse to work in a field that even remotely relates to autism because I can no longer deal with it.”

“… I look at other families who don’t have children with disabilities and some have great relationships. Other on the other hand, don’t have great relationships with their parents and siblings, so you don’t do things as a family as much as other families do. You make sacrifices. You do without things. But in the end, you’re stronger, closer, more vulnerable, more honest, a little more responsible.”

“…Living with my sister made my childhood unbearable. Between her physically violent outbursts, to her imposing rules and obsessions, life with her was a constant challenge. As a child (and teenager), I was very resistant to the controls she imposed on the household. I was often filled with resentment towards her, and my parents for trying to appease her demands.”

“Too much static growing up; will never have a true sibling relationship; grew up too quickly.”

“Parents devastated by experience. Family very tense, unhappy place to be growing up. Lots of distractions – the day ran according to my brother’s schedule.”

Advice From Siblings to Siblings

“… Have open communications. If not with your family, then with professionals. Talking about fears, anxieties, etc. helps rather than retreating into embarrassment or denial.”

…”It is difficult to grow up with a sibling who naturally requires more attention – try not to limit yourself because of your family situation, i.e. going away to college. Your family may be reliant on you somewhat to help care for sibling but try not to forfeit life experiences.”

My Childhood and Growing Up

“My brother was a ‘bright’ part of my childhood – a good memory.”
“I guess I’ve always felt like I’ve been 10 years older than my peers when it’s come to responsibilities.”
“We were taught responsibility at an early age and I don’t feel my brother added to that.”
“In adolescence, I felt it was a negative impact, but now in adulthood, a positive impact.”
“I admire my parents for the way they raised us. My brother’s disability didn’t hold us back.”
“I always felt like I had to be the strong or good child for my mother.”
“Because I had a lot of responsibility as a child I have become a responsible, loyal, even-tempered adult. However I also worry a lot!”

How My Life Has Been Affected

“We never got to do normal things like go out to dinner or go to sporting events. We always had to worry about how my brother would act. No one would ever baby-sit him so my parents always had to stay home. I missed out on a normal relationship with my mom.”
“Not much different than others. Some people have autism in their families and some people have other kinds of hardship. It is all the same.”
“My sister has taught me to be more empathetic and listen attentively.”
“I look at other families who don’t have children with disabilities and some have great relationships. Others on the other hand, don’t have great relationships with their parents and siblings, so you don’t do things as a family as much as other families do. You make sacrifices. You do without things. But in the end, you’re stronger, closer, more vulnerable, more honest, a little more responsible.”

Advice from Adult Siblings to Parents of a Child with Autism Spectrum Disorder

“Love your children al the same but differently. Be open, honest, and involve the sibling with things that are gong on in the autistic child’s life. Listen to advice and opinions of your children, because they might see it in another way that isn’t all that bad. Try to do things as a family as much as you can, because you grow up too fast.”
“Let them know everything about the other sibling, and not hide anything. The other children need to know everything about their sibling and what is going on so that they can better deal with it.”
“Make sure the ‘normal’ child knows they are loved just as much. Take time to check up ion them and communicate feelings about the autistic sibling and life in general. This should be two-way communication. It helps the child to know what the parent is feeling.”
“It is important to be sure the family’s whole life does not revolve around autism. Don’t let autism stop you from doing things out of fear. Your child with autism may surprise you (as will the reaction of some people). I never felt like my brother held me back and I thank my parents for that.”