Walk a Mile in Our Shoes

By Stephanie Loo, M.Ed

Sometimes parents of children with Asperger Syndrome (AS) have the good fortune to encounter someone who really listens to our concerns, offers us emotional support or concrete help, or understands and appreciates our children. We are deeply grateful when we encounter one of these wonderful people, and never forget their kindness.

All too often, however, encounters with other adults leave us feeling that our work as parents is either completely invisible, or considered of little value.

I spend most of my work day talking to parents who call AANE for information, referrals, and support. One day I happened to speak with two different mothers whose attempts to secure help for their children had been stymied repeatedly by the very family members, educators, pediatricians, and psychologists to whom they had turned for understanding and support. I knew the pain these mothers felt. I, too, have felt marginalized, excluded, or even bullied by other adults.

When you have a child with an “invisible” disability like AS (or a similar autism spectrum profile), you may find that others often judge you, ignore you, or dismiss what you say. If you have stayed at home to care for your challenging child, if you are poor or working class, if English is not your first language, or if you aren’t sporting a power outfit and an expensive haircut—you may be treated with even less respect. When you talk about your child’s needs, or your concerns, people may respond coldly or with indifference. If your child has a meltdown, they may imply that it’s because you are an incompetent parent.

Many parents tell me: “Years ago I said to the pediatrician/teacher/therapist, ‘My son does not have not a single friend. Could he have Asperger Syndrome?’ But the pediatrician dismissed my concerns.”

Some parents who say, “I took the neuropsychologist’s report to the school, but they don’t believe my son has AS and refused to give him an IEP or any special education services.”

There are many different ways of undermining a parent. Sometimes an educator or psychologist may dismiss a parent’s concerns with kindly meant (but actually condescending) reassurances such as: “Boys’ develop more slowly than girls,” or, “She’ll outgrow these behaviors.”

Some people may actually blame the parent: “If you weren’t so anxious, your son wouldn’t be so anxious.”

Or a relative may say, “That mother doesn’t know how to set limits. Give that kid to me for just one day—I’d whip him into shape!”

Standing Up for Ourselves and Our Children

Some parents may have such inner strength that they can push back against judgmental people. For most of us, however, it’s very hard to resist internalizing others’ low opinion of our ideas and our efforts, or the implication that we must be bad moms, helicopter parents, or crazy.

Being repeatedly ignored, disbelieved, contradicted, misunderstood, criticized, talked down to, or treated with disrespect wounds us deeply, and takes a toll. Starved for sympathy, facing incomprehension or even hostility, we fall prey to self-doubt. It’s hard to keep believing in the validity of our experiences and observations, to feel good about ourselves, and to keep advocating assertively for our children.

If you are a parent who feels you have been ignored, scorned, or blamed, please don’t lose heart and don’t give up. Stay strong! In your mind, if not aloud, say to your critics: “Walk a mile in my shoes!”

Trust your own instincts and your own experience. Most likely, your critics have little understanding of AS. They have no idea how hard you work every single day to understand, get along with, love, and guide your child.

Try not to dwell on the unkindness of others. Instead of listening to the nay-sayers and the know-it-alls, seek out people who can offer real support.

Many parents who call AANE feel enormous relief. They say: “You’re the first person I’ve talked to who really understands!”

You see, all AANE Child and Teen Services staff are also parents. We understand your concerns. We can listen respectfully, and validate your feelings and ideas. We can work together with you to figure out how to address the challenges that sometimes seem so overwhelming.

So when you are feeling as if you are the only parent on earth who is raising such a quirky and puzzling child—pick up the phone and call AANE. Post to the online parent forum. Attend a parent workshop or webinar. Here you will find other parents who can share your concerns, offer you the benefit of our experience, and celebrate your victories with you—large or small. You are not alone.