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

LESSON FOUR: Managing and Breaking Through Isolation

OBJECTIVE: Identify pros and cons of support group and conferences

Picture of Rodin's sculpture, The Thinker
To think about:

Why are families isolated?
Do you think your family is more isolated than families with “typical” children or more isolated than families with children with other special needs?
Did you ever experience a period of isolation? How did you break it?
Click here to find out What Other Families Had to Say...

Suggestions: Get together with other families with children with this disability or other special needs. There is strength and comfort in numbers and understanding and tolerance. When you are getting together with another family or other family members, build the get-together around an activity. Picnics, the backyards BBQ are too loose and unstructured.
Try a support group and take the initiative. It is likely the person sitting next to you is also feeling isolated.

Some caveats regarding support groups:

Picture of a "Caution" road sign
  • The purpose is to be supportive, but beware of rivalry, competitiveness (e.g. who is suffering more, whose child is more impaired).
  • Do not take what the person sitting next to you says as gospel. Maybe megavitamins or auditory training provided some improvement. Maybe it did. Maybe it didn’t. But you have only that parent’s word. You have never seen this parent’s child – either before the treatment or after. Keep in mind that that this parent, like all of us at times, most likely desperately wants to see improvement.
  • Do not allow yourself to be sucked into someone else’s world of hurt or anger or despair. As parents of children with special needs, we all have our struggles.
  • Listen and offer some gentle comments without being strident or opinionated.
  • Do not feel obligated to attend every session. The group WILL carry on without you.
  • Take a week off now and then – not because you have something special to do – but to give yourself some time alone. Or with a friend. If you have already carved out Tuesday night from 7-9 twice a month and you have childcare, use the time for your own pleasure and relaxation. Remember: This support group is not an obligation – except if you are the leader.


I would say our first breakthrough from isolation came when my son left the therapeutic pre-school and entered a separate classroom in a public school. Small and nurturing, its students had a variety of emotional and behavioral issues but their social skills were somewhat better. He was asked to birthday parties for the first time ever. The parents understood. I didn’t have to be on edge. They were ok with my son and who he was. They were happy to have him over. After all, they were experiencing the same isolation because their children were different too. For the very first time, he had play dates and invitations. This was a relatively pleasant period.

Picture of a birthday cake

This is not to say that I never felt isolated ever again. Every time I went to an open house at the middle school or high school, I felt like an alien. What planet were these folks from?

Picture of an alien planting a flag on a planet's surface

Who were these people who were worried about such seemingly little things? Like the parent who was concerned that her child was not being stimulated enough in language arts class because she always reads three books at a time. Their lives were nothing like mine! I never truly realized how isolated and different I felt in those settings until I attended those same open houses for my daughter a couple of years later.
“So this is what it feels like”, I remember thinking.
“ I can relax. I can look around. I can smile. I can nod in agreement. “

Picture of Rodin's sculpture, The Thinker
Think About:

Have you ever experienced feeling like you live on a different planet?

A DIFFERENT PARENT TO A DIFFERENT CHILD

The above paragraph and the story I will tell now illustrate how for those of us with more than one child, we can feel like two different parents. I call it “The Schizo-Mom Syndrome”. Here is the best example of the two me’s: One weekend this past May, on a Saturday night, shortly before midnight, my husband, I and our daughter were trying to calm down our son who had been screaming in anger, then sobbing in frustration and finally, in profound sadness. It was emotionally exhausting and heart wrenching. That is Mom #1. Sleep-deprived, worried and sad, the very next day, I am in the mall, in a chic boutique, engaged in the coming-of-age ritual of shopping for a prom dress with my daughter. Mom #2. I feel like the host on the game show where imposters tried to trick a panel: Will the real Mom please stand up?

I suppose I am both – Mom #1 and Mom #2 - a different Mom to two very different children. Yet there are some parts of parenting as “Schizo-Mom” that are exactly the same: I worry about each. I am proud of each. I try to have fun with each. I try to laugh with each. I am available to comfort each. I have moments when I dislike each. I love each.

Two books that helped me in the early days were “Children with Autism”, by Michael Powers (Woodbine ) and “Emergence: Labeled Autistic” by Temple Grandin. (Warner Books-paperback). Since our diagnosis in the mid -1980s, there is so much more literature to sort through. No one has the time to read all or many of them, so let’s try to provide some focus:

Exercises:

What books have you read that you would wholeheartedly recommend to other parents?
After you list these books, what information that you learned would you share with someone who (a) knew nothing about the disability and (b) someone close to you and your family that would enhance their understanding and their relationship with your child and your family?

Picture of a pencil and paper
ASSIGNMENT: If you have some time, you might want to look at some books...

Stack of booksBOOK REVIEW- List your top two or three books and write a short (100 - 200 word or so) review of each.
Next, browse through these websites and pick two new books of interest that you will ask your local library to order.
Sites of some publishers of books on special needs:
www.futurehorizons-autism.com
www.healing-arts.org/children/autismbooks.htm
http://www.vaporia.com/autism/autism-bib.html#intro
www.autism-resources.com/books-alpha.html
www.exceptionalresources.com
www.autismweb.com/books.htm
www.parentbookstore.com/pdfs/geneva_centre_top30.pdf
autismdepot.jctpublishing.com

Another excellent source of information is workshops and conferences.

A warning: Be on alert for burnout.

Picture of a woman who is experiencing burnoutAlso keep an open mind. Just because you hear information presented at a conference, the information may appear more credible but may not necessarily be true.
Don’t take information as gospel.
It is perfectly okay to go through cycles of seeking every piece of information and then of sitting back. I went through a couple of intense years where I felt I had to attend every conference or workshop or speaker that appeared anywhere in the area and once traveled to an international conference in Canada. Some of the information you get will be “cutting edge” from leaders in the field. You will also come to recognize the “superstars” of the autism/Asperger’s world, young adults or adults who “go on the circuit”, speaking at conferences. I find this alternately hopeful and distressing. Hopeful because they are inspiring and yet I feel sad because the same names keep appearing and I realize that so few of our children will ever achieve that level of self-awareness with such an ability to articulate their feelings and experiences. These few, though, are a gift to professionals and parents.

A suggestion: Don’t go alone. Either plan to go with someone or hook up with someone at the event because it will be important to debrief.

Let me tell you about my very first large conference in Toronto. It was 1993 and a friend who had a younger child with autism and I flew to Toronto. When we walked in the hotel lobby, we saw a huge banner that said something like “International Conference on Autism”. We both had the same reaction: We set our suitcases down, looked at each other and said: “What are we doing here?” Just seeing the words on a banner spanning the lobby, coming out of the closet, so to speak, and with hundreds – thousands, really - of other people was overwhelming. We later agreed that we had every urge to turn around and go back home. Instead, every afternoon and evening we went back to our room and talked about the sessions. We debriefed, laughed and cried.

Make an effort to tell others:

What conferences or speakers are “musts”? If you could recommend one or two a year, either in your geographic area or in the wider region, to other parents and educators, which would it be?


This course was developed by Hedy Lopes, B.A., Parent