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Better name for 'Autism' labels

Updated: Feb 9, 2020

One in 68 children have autism, which is roughly 1.5%.

I have two children, both have autism. The statistics don’t matter when 100% of my children are autistic.

Some people get wrapped around the axle on whether I should be saying that my kids ‘have autism’ or if they ‘are autistic’. To me, it doesn’t matter. I stopped reading into labels a long time ago.

When my daughter, Katie, was only 12-weeks old, she started going to an in-home daycare with Ms. Betty who has an autistic grandson. I was so ignorant about autism at that time, that I dismissed her concerns about the label based on something that I had heard on the radio, “It’s a spectrum, so they labeling every kid they don’t understand as ‘autistic’.”

I did not understand it, didn’t care to understand it, and I dismissed her concerns. I still owe her an apology for that one.

She was the first person to tell me that in all her years of working with children, she had never had a child quite like Katie. That planted a seed in my mind.

At 13 months, I knew something wasn’t right with Katie. We were visiting my in-laws. My husband’s cousin, Mary, was a teacher. She made a comment that maybe Katie wasn’t talking because she was autistic. That was the first time someone had put a label on it. I didn’t say anything, but I was pissed. How dare she suggest Katie was anything but perfect, and use such a dirty word. But Mary watered the seed that had been planted. I did later apologize for that resentment.

I started listening to my heart. I had known all along that something was just not right. I was so terrified of the truth, that I buried it deep inside, hoping it would go away; hoping Katie would grow out of it. I have seen a lot of parents hope that their kids will grow out of it. Even my husband said, “She’ll be fine.” But I knew I had to find out what ‘this’ was. Looking back, I now can see the repetitive behaviors and sensory issues were there even as young as 6-weeks old.

It is understandable that ignorance is bliss because the word “autism” is terrifying to new parents. But I slowly came to the realization that I could not begin to tackle the problem if I didn’t know what it was.

When Katie was 15 months, we took her to her pediatrician. I said things in that appointment to help dismiss my own concerns. I told the doc how smart she was, citing concrete examples to prove her intelligence. Not sure who I was trying to convince. He told me there were enough concerns to warrant further investigation, so I was referred to a pediatric psychologist.

Of course, the waiting list was immense. I called every two days to see if someone had cancelled. I think after a couple of weeks they were so sick of me calling that they said, just get this woman an appointment and shut her the hell up! And, at 17 months old, Katie was diagnosed as being on the autism spectrum.

The diagnosis itself is like getting hit by a truck, getting punched by a heavy weight champ in the solar plexus, drowning. The word “Autism” is scary. It’s change, and change is scary. I don’t know if there are words to describe the grief, panic, isolation, despair and frustration that overwhelmed me. But I pushed all of that aside to concentrate on “where do we go from here.”

I came to the realization that Katie is the same person today as she was yesterday. She didn’t change who she was just because a label had been slapped on her. The label sure didn’t change the depth of my love for her. Katie was still Katie, but now I had some knowledge, and that is powerful.

I learned that the worst prognosis on paper got her more of services. I was no longer afraid of labels.

I also learned that the label has no indication or bearing on outcomes. Action was an indicator for her outcomes. Action could only come with the label.

At 18 months, my son, John, was diagnosed. I already knew he ‘had autism’ or ‘was autistic’. Not being our first rodeo, I was not afraid. I wanted the label so we could get him needed help.

When it comes to labels, I kind of like Hans Asperger’s nickname for autistic children, Little Professors, because every day kids with autism teach me something new.

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