Thursday, March 08, 2007

Ideas For Finding A Sibling Support Group for Parents of Kids with Autism

Carol from Mercer County, New Jersey, writes:

I am trying to form a sibling support group, 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. 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?

Carol posted a comment in response to an earlier article, "What A Child's Autism Means to Brothers and Sisters." She is voicing an issue familiar to families who have a "typically developing" child and another child with an autism spectrum disorder: how do you find places where your child without autism can discuss her feelings in a safe, supported environment?

I've come up with a list of suggestions below. It would be very helpful if you, Autism Bulletin readers, could add your own suggestions to this list by posting a comment on this website, or writing to me at michaelsgoldberg AT, so I can share your ideas (anonymously if you wish).

Some suggestions for finding information about sibling support groups where you live:

Ask other parents, wherever you meet them, including the places listed below. Ask them about the issue of sibling support groups and listen to what they say. Some may know nothing. Others may lead you to the people and places you need.

Inquire at your autistic child's school. What have parents in past years done to get sibling support? Did the school host one? Have other parents found support through agencies that provide autism services to kids on the spectrum?

Check with autism service providers, including those that provide applied behavior analysis (ABA), or places that deliver other kinds of services to kids on the spectrum, such as occupational therapy. Even if the direct service specialist doesn't know, you can ask them to ask around their office, and other families.

Look up autism advocacy and support groups. In Massachusetts, the Autism Spectrum Division of the Office of Health and Human Services provides some funding for seven regional autism support agencies, including money to run sibling support groups. (See a list of the regional support groups on page 2 of this PDF document.)

Seek information at social service agencies. A recent New York Times Magazine story highlighted the sibling support group at the Jewish Community Center in Scarsdale, N.Y., run by a social worker and "fervent 'sibshop' advocate," according to The Times. There must be other similar efforts in other states. (See more about the magazine article here.)

Look into colleges and universities that prepare teachers to work with autistic kids. The demand for autism services is rising along with the prevalence of autism spectrum disorders. (See more on that issue here.) With preparation and support, teachers and teachers-in-training can be good sibling group facilitators -- and learn a lot about autism from these siblings who live with their brothers and sisters on the spectrum. Researchers working on educational models for children on the spectrum have opened schools on campus -- including the Douglass Developmental Disabilities Center at Rutgers, the State University of New Jersey in New Brunswick. They should know something about sibling support groups, where to find them or how to start one.

Ask at advocacy groups. The Autism Society of America has a helpful article online about helping siblings understand what autism means, written by Sandra Harris, executive director at the Douglass Center at Rutgers. Find the article here. The article notes that the well-known advocacy group, New Jersey Center for Outreach and Services for the Autism Community (COSAC) has an active sibling support program. The article also mentions The Sibling Support Project, established in Seattle in 1990, as a national effort "dedicated to the interests of over six million brothers and sisters of people with special health, mental health and developmental needs." See more at Notably, this group trains sibling support group facilitators. And it provides support for adult siblings of people with developmental disabilities.


Anonymous said...

There are also a few "self-help group" centers or clearinghouses that often can provide ideas, support and contacts to those interested in starting any type of mutual aid self-help. Here is a listing of such clearinghouses worldwide:

What really helps is just finding any parents who have started their own sibling support group for their children. Does anyone know of such a group? It might serve as a "model" to encourage and help other parents?

- Ed

Anonymous said...

Strangely enough, I've tried to get my older son involved in a support group, and he says "Why would I need to talk to anyone about my brother's autism? I don't need help with that." But I have been involved in trying to set a local one up for other kids, and in case mine changes his mind.

Maddy said...

We're fortunate to have the Parents Helping Parents support group here in the Bay Area which should be very useful in years to come with typical sib support.
But for right now, we're in the name position as Mel in that my daughter is [at the moment] so used to the way that the boys are that [as yet] she doesn't need outside/ independent support. fingers crossed!

Unknown said...

Hi! My name is Alicia and I am 14 years old. I have a seven year old autistic sister named Kasey. I too am having some difficulty with some things. I am trying to start an organization for autism. I want it to be a local center where children & adults with autism can gather with their families and everyone can meet & learn to cope together. I am truly determined and have already spoken with my state Rep. I agree with you though that it is tough to get this up and running. My advice to you is just to get the word around and try to get as many supporters as you can and look at as many websites as you can. Remember don't let anything stop you from achieving your dreams. You can do anything you set your mind to! I will kepp you in my prayers & I hope the best for you and your family! You can e-mail me at any time! My e-mail address is

Michael Goldberg said...

Thanks Alicia for your comment, best wishes. Michael