A Life Lived Without A Label

“I’m undecided about having my child assessed; I don’t want them to have to live with a label.”

I’ve seen it in facebook groups, I’ve heard it from people in real life. You probably have, too. That fear that having a name for a child’s difference will ruin their lives forever. So I’d like to tell you what it’s like to grow up without an official label. Refusing to get an official label does not protect your child from being labeled; it just takes away any power you have about what the label will be.

I did not need adult to tell me I was different. I already knew. I knew in preschool that the other children were excluding me, but I did not know why. I could see what was supposed to be, what everyone else was doing, and that I was not a part of it. Kindergarten was no better. I saw the skills the others acquired on the playground; tricycles and swings and monkey bars. I didn’t master the monkey bars until later grades, but I put the time in learning how to do them, watching others. But there was no one there cheering me on like the other kids had, happy for me when I finally skipped. And there were a lot of other skills that I missed. That require another person, several other people, to practice and learn with. But they did not want to spend the time with me. Why not? I didn’t have a label; at least, not one that adults had given. But that didn’t stop the other children from knowing that I was different. I knew I was different. But no one ever explained to me how very different everyone else was from what I thought humans were and are supposed to be. So I went though life knowing but not knowing.

I struggled so much. I wanted to be good. I wanted to not get in trouble. But sometimes I would get so overwhelmed with injustice, unfairness, wrongness, everything that I would explode. And that was my fault, I was told. I was choosing to be bad, the adults in charge believed, because they looked at me though the lens of “she should be normal, why isn’t she behaving normally, she must be misbehaving on purpose.” So I tried harder to control myself, to shut up, say nothing, take it all, don’t complain, until I couldn’t any longer and it happened again. I overheard family members talking about me. The ungrateful kid who gave her suffering grandparents such a hard time; the Problem Child.

I got older and I got plenty of labels; just not official ones. I was infamously known in elementary school as “The Girl Who Read at Recess.” Everyone in the school knew me as the only kid who voluntarily sat on the dreaded “detention bench.” There really wasn’t a better place to sit and read. Changing schools in the middle of 6th grade and again in 7th grade didn’t change a thing. Somehow my classmates knew, just by looking at me, that I was Different. Anxiety and depression came hand in hand with puberty hormones and a suicide attempt that my in loco parentis still probably don’t know about. Don’t want to know about. It is an affront to them to suggest that my upbringing was anything less than perfect. “I would have kept you if I’d been allowed to medicate you,” one relative told me as an adult. I don’t think she realized how monstrously hurtful that was to hear.

I struggled in high school with executive functions and anxiety that looked like laziness and forgetfulness to the inattentive and too tired to care. I managed to graduate after almost having to do a 5th year despite good testing skills. I got married young and still struggled. I eventually got a label but it was the wrong one. It was a label that made me afraid of myself, that required meds that made me gain so much weight, and caused chronic insomnia that still endures despite being off of the meds for years. It wasn’t until my 30’s that my children were identified and I finally realized the truth of myself. The truth of how very different other people are from what I thought they were. And how I’ve been speaking the wrong “language” to them this whole time. If only I had known. If only I had been identified, told, had it explained to me. Things could have been so much better. At least I would have known why; there would have been a purpose to it, rather than a nebulous feeling of off-ness. I was so hurt and angry when I realized that I was autistic. How could everyone have missed it? Why didn’t they see it and help me? Why did I have to struggle alone, never fitting in, never finding people I could connect with?

This is not just my story. The details are mine but the underlying structure and emotions have been echoed by other late identified people on the spectrum. Every one has felt anger and betrayal by the adults in their life that failed to see it. At least those parents have the excuse that it wasn’t well known and understood at the time. But if you have been referred, if you know it’s a possibility and you chose to not go through because you think a life of understanding and help is worse off because there is an official word attached to it then you are betraying your child. You’re guaranteeing them a late in life diagnosis. Because they will figure it out eventually. And they will mourn all the hurt of the wasted years of not knowing. And you will have done that to them.

3 thoughts on “A Life Lived Without A Label

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  1. Whenever people say they dislike “labels,” I automatically think, “I don’t!” When I hear “label,” an image of the sale shelf at the grocery store comes to mind. I would never buy a label-less can of food! I always think, “I love labels; they tell me a little about what’s in the can.”

    When I was diagnosed at 51, my shiny new label helped me immensely. It explained my personality, my struggles, my triumphs. What is, is. Giving it a name doesn’t change that, but it does bring some solace and validation.

    Thank you for this much-needed essay. It’s good for neurotypical folk to know that there are real autistics who aren’t ashamed of our label but are glad for it.

    Liked by 2 people

  2. Another problem with avoiding labels, it makes it that much harder to get the services and therapies to help your child cope. I don’t know how many things my son missed out on in his early years, because we had a psychologist who didn’t want to label him as autistic. I know he missed out on services that could have helped us afford an alarm system for doors and windows, because he was a wanderer. That meant his father and I spent many nights away, or sleeping laying on the floor in front of the doors when he was 5, because he would try to go out to play at 3am. But you weren’t eligible for them without a developmental delay diagnosis. He didn’t get officially diagnosed until he was almost 7, even though we knew at 4 what was going on, and his symptoms were well within the DSMV guidelines (this was back in the late 90’s). He also didn’t get into speech therapy until he was almost 7 for the same reasons, even with a 2.5 year speech and language delay. Because no diagnosis, no therapy. So not having a label is more problematical than having a label, both for all the very good reasons you outlined and just for being able to get services that actually help.

    Liked by 2 people

  3. Great blog, thank you for writing it! It was not until my older son was diagnosed with Aspergers that I realized…so was I…and my dad too! Seems like “normal” people can understand us better if there is a label to help them.

    Liked by 1 person

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