Tuesday, February 20, 2007

What A Child's Autism Means to Brothers and Sisters

The New York Times Magazine on Feb. 18 featured a story about the Perry family from suburban Austin, Texas, zeroing on what it means for 14-year-old Tarah Perry to have 16-year -old autistic twins, Jason and Justin, as older brothers. See an online version of "Her Autistic Brothers," here.

This is a story worth reading for parents thinking about the effects of their autistic child's disability on their other kids. The writer, Karen Olsson, was able to spend a lot of time with Tarah Perry and hear what her life has been like, how her brothers' development has affected her. She both worries about them being bullied (she has witnessed incidents at school), pesters them to apply deodorant, and can help them adapt to an unsettling situation in public (such as the overstimulating lights in a hotel lobby). Here's a telling passage about Tarah:

All her life, she has been not just their younger sister but their de facto older sister, sometime translator and mom's right hand. ... When they were young, Jason and Justin spoke only about 50 words, and those in odd, high-pitched voices. But according to Tarah's mother, Jennifer: "It was like she knew what they wanted when I didn't, and she would help me figure it out. Tarah was mother hen to these boys. I probably shouldn't have put her in that position, but oh, my God, she helped me so much."
The story goes on to say that research into the effects of disabled children on their typically developing siblings is inconclusive. Some kids are affected negatively, others are influenced positively -- to be more sensitive to people who are different or disabled, for example. And others, there is no discernible difference. Those general trends apply to families with an autistic child, however, The Times notes that autism is a particularly challenging reality for siblings since it is a difficult condition to understand for anyone, not just children, and the behaviors of the child with autism can emerge without warning. Autism also can preclude or limit the social interactions that make sibling relationships so important while growing up. (There's also the fact that a child's autism, depending on the severity and stage of development, can influence an entire family's routine, such as trips outside the house.)

So while research about sibling support groups is inconclusive, the story takes readers on a visit to one at a Jewish Community Center in Scarsdale, N.Y., which suggests that giving children the chance to talk about a sibling's sometimes frustrating, confusing disability is a good thing. At the "sibshop," a 6-year-old girl named Ruthie explains that her brother is bothered by beeping noises. It troubles her, she says, "because I don't want my brother to be like this, and it makes me feel sad that he has to be afraid of that." The group chimes in that she can't blame herself for her brother's behavior. "I only help when I need to help," says a boy in the group.

You don't have to look very far for that poignant sense of responsibility that siblings can feel toward autistic brothers and sisters. All you had to do was watch the Feb. 18 episode of "Extreme Makeover: Home Edition" during which the TV crews rebuilt the home of the O'Donnells, a family with six children, including five on the autism spectrum. Who was crying the most when the crew showed up at the family's house in Austin to begin the makeover process? It was Meaghan, the 9-year-old who is not on the spectrum, and works hard, the episode explains, to help her mom.

The Austin American-Statesman visited the O'Donnells to watch the show with the family. You can read that story online here. (Registration required.)

Siblings of young children with autism also can play a pivotal, positive role in home-based programs using the principles of Applied Behavior Analysis. Read a recent Autism Bulletin story, "What Makes An Effective Home-Based ABA Provider," by clicking here.

5 comments:

mcewen said...

I read that article [online] too, with great interest. We're fortunate here that there is a siblings programme run by PHP where the 'typical' kids get to share their experience with others in a similar position.

We [parents] have to be so careful not to exploit our typical kids into being surrogate therapists. [for free]

I remember people saying when I was pregnant with one child, when my oldest was 14 'how handy - a built in baby sitter.' I wasn't best pleased with that view point and it put me on my guard.
Later when the boys came along with their issues, I was even more wary.
I don't know how you get the balance 'right' but I know that I have to be very careful.
Cheers

MOTHER OF MANY said...

It must be so hard for siblings, I have six girls with three on the spectrum.My 6 year old is profoundly autistic but for her sisters whose ages range from 15 to 24 she is the baby of the family which has caused no problems for them.The 15 year old and the 21 year old are also on the spectrum but their symptoms are less severe so they cope o.k and as far as the other girls are concerned, they are just their sisters who don't quite see things the way they do.Thankfully there has been no real issues apart from the usual sisterly fights which happen in all families.

Michael Goldberg said...

Thank you both for your comments. I agree that this is a priority issue; it's very important to pay attention to the emotional needs of other children in the family as we work hard to give our kids on the autism spectrum chances to grow and develop.

Anonymous said...

I read this article too and unfortunately there really aren't any sibling support groups in my county. I am trying to form a sibling support group in Mercer County, NJ but I am not having much luck with finding space to hold the group or anyone who will sponsor this type of group out here. I have a 10 year old daughter who is "normal" and my son was diagnosed with Autism, ADHD and Intermittent Explosive Disorder and she feels very alone and like no one understands her and it is heart breaking. Anyone have any ideas of how to get a sibling support group up and running please contact me at blondeey83@aol.com. Thank you. Carol

Anonymous said...

I read this article too and unfortunately there really aren't any sibling support groups in my county. I am trying to form a sibling support group in Mercer County, NJ but I am not having much luck with finding space to hold the group or anyone who will sponsor this type of group out here. I have a 10 year old daughter who is "normal" and my son was diagnosed with Autism, ADHD and Intermittent Explosive Disorder and she feels very alone and like no one understands her and it is heart breaking. Anyone have any ideas of how to get a sibling support group up and running please contact me at blondeey83@aol.com. Thank you. Carol

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