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'What's in a Name?' A Mother's Thoughts on Diagnosis Labels


I’ve known many parents who get defensive over putting labels on their children. “ADHD” is a dirty word to a lot of parents. People who don’t understand autism spectrum disorder think it’s a death sentence (it’s not). I’ve been OK with “labeling” my son because it helps us define the issues and get him the help he needs. He’s been able to get more support services at school, get into social skills camps, and things like that – because of this label that a lot of people are against. He needs it. If we feared the label diagnosis, he wouldn’t get the help that he needed.

“Sensory modulation disorder” has now been added to the list. This diagnosis is important because now we can get some help putting together a sensory diet to help him deal with all of the things around him that get him “out of whack,” so to speak. He just kind of has a general sensory disorder, in that many things put him off-kilter. Touches, smells, sounds, etc. He’s living in a world he cannot regulate, and we have to figure out how to get him used to that world. “Lack of coordination” is just something he has to work on.

Things can  get pretty rough around here sometimes. My son has gone from self-harming, which he still does, to throwing things and getting physical with others. I have been hit, kicked, punched, shoved, and bit. When we put him in his room, he screams, throws things around, and hurts himself. I’ve tried using empathy with him and identifying his emotions with minimal success. Our reward system works intermittently. We still have so much to work on to help him.

A doctor diagnosed him with generalized anxiety disorder along with the autism. The anxiety diagnosis I found pretty easy to accept because we’ve known that was an issue for a while. My son has to know where we’re going, what we’re doing, who’s coming with us, and what’s next. He gets really nervous about thunderstorms. He doesn’t like having his light off. He wakes up if he hears noise during the night. He has picked at his nails until they’ve bled. He’s extremely nervous around people he doesn’t know. All of that indicates anxiety.

Sometimes doctors want to diagnose him with oppositional defiant disorder, but I feel strongly against this diagnosis. Children with autism often come off as defiant because the world around them doesn’t work the way they need it to, so they try to control it. I still think that’s what he’s doing, to a degree. He’s trying to control his world to make it feel safer for him. Sometimes he pesters the dog relentlessly in the evenings after a long, overstimulating day. Or he tells us “no,” flat-out, he’s not going to do something. And no matter what we do, we cannot make him do it. Or he pushes children for no discernible reason. Of course, he also does things to please us, like cleaning up when I ask him to, going to get things for us when we need them, and helping take out the trash.

Either way, these labels don’t define who my child is on the inside. He is who he is. He’s still my baby. I carried him inside me for nine months, gave birth to him after 20 hours of labor, and nursed him for 13 months. He’s still the child I read little board books to, watched roll over, then crawl, the sit, then walk. He’s still the toddler I played silly games with and watched “Little Einsteins” with and watched speak his first words. He’s still my little boy. The same little boy I read stories to, watch tickle and play with his little brother, snuggle with on the couch, say silly things to, and sometimes even get to play with.

These labels exist merely to help him get past the behaviors the labels describe. Some behaviors are more pervasive than others and will likely follow him the rest of his life, but that doesn’t mean we can’t find him some good coping strategies.

Diagnoses are only as good as the services that exist to help moderate them. I’m forever seeking services, help, and support. Forever reading books, blogs, and research. Leaving no stone unturned. We still have plenty of time to help him cope with the world around him. That’s what early intervention is all about.

Label, schmabel. Those only exist on paper. The only real label he has is the name I gave him at birth.

What do you think about labels? Leave your thoughts in the comments section below.

Originally posted on EmbracingtheSpectrum.com.