The label became the key to the services we got to help him. It helped people understand in just a word that he was not just acting up, or at the very least, it made them back off and let me work with him.

Some months after he was diagnosed, a friend at preschool was pressuring me to enroll him for the next year. I explained that we had another plan and when she pushed, I told her that he'd been diagnosed with autism, and that we'd come up with our plan with the help of the preschool teacher, his doctors, and the school district. She told me, "I don't believe in labeling children."

Well, neither did I, until I needed to.

I have dealt with this for the past 8 years with my son. He has had so much to deal with during that time, and I feel terrible about it. You're right, though, about how the label of autism is better than the other, worse labels. I had a neurologist tell once that he didn't have autism, it was just bad parenting. I was so angry that I cried. How could a doctor who works with brain issues ever say something like that?

Thank you for your blog. It is helping to understand my son even better because of how clearly you write about yours.

This is such a moving account of the most disempowering situations imaginable.

Love & all my respect to you for holding onto integrity there

Mary LA

More than anything else, this meant that the oddities were NOT MY FAULT.

He was 9 at the time, and his father (and his father's family) were quite clear on the issue: anything wrong with our beautiful boy was ALL. MY. FAULT. Maybe because we moved too frequently (in the same neighborhood ), maybe because I divorced him and married a man who didn't have that sort of history of abuse - for whatever reason, I was ruining the child.

Being absolved of all that by a pediatric psychiatrist (and then another, because my ex could not believe there was anything actually wrong with our boy's development) was one of the greatest reliefs of my life, because it meant that I could do something, it was not all about me and my parenting errors.

Conversely, when we realized that my daughter had issues (merely sensory integration, resolved easily once we figured out that they existed) I grieved for weeks and weeks. My husband (not the ex, the new and improved husband, who actually listens when I speak and vice versa) and I had no enmity over the causes of her differences and we were both aligned in our desire to help her. The diagnosis hurt ever so much more.

By now, we don't need labels anymore. The kids are growing into fine humans, and we've learned how to help them with that - practically speaking, the labels were a learning shortcut for us.

When my mom first found out she would be having a Downs baby she was encouraged to abort or to adopt him out. He would never be smart or able to live on his own. He would be sickly and die young. He would certainly never read or write and may never walk.

She didn't accept their view of what he would become and she worked tirelessly - with the help of the services provided because of his label as well as by herself - to help him become what he is now. And believe me when I say he's an amazing human being. We don't even really see the label anymore.

mc