Survival Strategies of a Family on the Aspergers Spectrum

Susan Shanfield, LICSW

Susan Shanfield wrote and presented this talk at AANE’s Celebration of Community on March 7, 2004.

Hi Everyone. What an amazing experience that we women and girls are gathered here together to celebrate our strengths and differences—and I think that we’re making history at the same time. Usually with Asperger’s, the boys get all the attention. However, one in five people with AS are women. My daughter and I are two of them.

I always think of my family’s situation as unique, but maybe it’s not as unique as I thought. My son and I have Non-Verbal Learning Disability, NLD. My 16 year old daughter has Asperger’s Syndrome. So, some funny things can happen in our family, as you might well imagine!

But first let me backtrack. As a child with NLD back in the 1950s, from earliest memory I knew I was different from everybody else. All the other kids were having a blast playing, jumping and running around. I was extremely self-conscious and couldn’t imagine what to say to other children. This playing was supposed to be fun? I didn’t get it. The only child I did enjoy was my little sister—16 months younger—and she was a god-send. We were best friends—and still are.

Then there were organized games. Guess what? I was awful—horrible—the worst in the class. I couldn’t kick the ball and was always tagged at duck–duck–goose. In baseball, my own team tried to hide me and the other team would gleefully accuse them of doing so. Primary school was a blur of humiliation. But—not quite. I was an excellent student, especially in English and history. I loved to read and spent many hours of pleasure with my books. I also realized I had a talent for writing, which was very satisfying and helped me feel better about myself. In those days, no one knew about Asperger’s or Non-Verbal Learning Disability. The psychologist said I had “minimal brain dysfunction”. Oh yeah, and one other good thing…I was very kind-hearted and really felt for other children and adults who had special problems.

As I grew up, things gradually got easier, especially after adolescence was over. I became less shy and my self-esteem rose. I decided to become a social worker in order to help others who were struggling. To this day, it has been one of the best decisions of my life. I think my ability to be sensitive to others might not have been as strong, had I not had the learning disability or, should I say, “learning difference”. Today, I have a private psychotherapy practice, which is enormously satisfying to me.

In my late 20s I married and had my kids. My son was a handful. He didn’t seem to like other children at all and was often irritable and gloomy. He also needed constant attention. There was just something different about him. When they wanted to test for problems in second grade, I was highly insulted. “He’s fine” I said. “We’re all like him in our family”. Was I surprised to find that he indeed did have something called Non-Verbal Learning Disability, which involved deficits in understanding visual information, sensory integration, and poor fine motor skills! I looked at my husband and said “I think I have it too”. Sure enough, testing confirmed it. I was able to see my childhood in a new light. No wonder I had all those problems. I wasn’t just backward or clumsy.

My daughter was a different story. A very happy child, she was able to entertain herself for hours with her stuffed animals or just playing imagination games. We would often hear her running around her room, jumping off her bed and carrying on a conversation with herself. As she got older, we began to worry. “Should she still be talking to herself like that?”

But she was awfully cute—just a little different. She didn’t show much skill in playing with other kids, either, although she really liked them. Eventually, by trial and error, we managed to find a few compatible friends. She was smart too—and a wonderful writer—even better than her Mom! But, by the time she turned 13, everything went wrong. She no longer had friends, she was extremely anxious, and she had terrible mood swings. She was always impulsive—but things were getting dangerous. By seventh grade, she had been suspended many times for “inappropriate behavior.” You can imagine the many therapists, doctors, etc. we took her to. I could tell you some terrible “war stories” about them.

Finally we got a diagnosis. She had Asperger’s Syndrome and my husband and I became experts. We had to interpret her behavior to teachers, pediatricians, and others. There were so many stupid comments which people have made to us and to her. She is doing better now but has a long way to go. She still won’t admit that she has Asperger’s—she finds it too shaming. She’s in a special program at Newton North and she loves it. Gradually, things are getting better.

Now, for the survival strategies in this family where three out of four of us are on the spectrum:

  • Who says neurotypical is better? We are refreshingly different and lovely.
  • Our strengths are very, very impressive.
  • We try to see the humor in the many mistakes and difficulties we all encounter daily. A favorite opening line is “You’ll never guess what happened to me…” It’s usually something pretty weird, like the time I couldn’t understand the traffic officer’s hand signals and he got so mad he threw his hat at my car!
  • We understand each other and sometimes we even laugh about the odd things those neurotypicals do, like wanting to socialize for hours on end!
  • We explain ourselves to others a lot so they will understand.
  • And lastly We try very hard not to judge ourselves, and we are compassionate to one another.

I think we actually do very well—better than a lot of people out there who do not have Asperger’s or Non-Verbal Learning Disability!

So, all in all, it’s not always easy to be on the spectrum, but with resolve, compassion for one another, and a little sense of humor, we can not only get by—we can actually flourish!