Sometimes, Numbers Do Lie

Dear Holden,

Your mama is a numbers person. As are you! I have “data” in my work title and I thrive on knowing things through their relationship to others. So when I heard that you were “on the spectrum” I did not find that explanation to be terribly satisfactory. Where, exactly, on the spectrum were you? I had this new information about you and yet it seemed to tell me absolutely nothing.

So, I went looking for numbers and, honey, what I found was not good. An estimated 75-85 percent of adults on the spectrum are unemployed or underemployed. A significant number of people with autism also suffer from anxiety and depression. Studies have found that up to 66 percent of people on the spectrum have contemplated suicide. The lifetime cost to families of supporting an ASD child ranges from 1.4 to 2.4 million dollars.

Holdie Bug, these numbers nearly put me over the edge. But eventually I came to realize they didn’t tell me much about you either. Because you are you. And according to you, “autism is a funny word” and it means you have a “full and creative mind.” You think Curious George might be autistic because he’s also creative. You’re five years old, so your employment prospects are slim at the moment, but you think you may want to be a teacher at church.

Or possibly a volcanologist. And while you have a very low tolerance for scary movies, I wouldn’t describe you as either anxious or depressed. If anything, you are clinically “silly” – a word that has been used to describe you in every single evaluation report.

Your autism diagnosis has changed my thoughts about your future, but maybe those expectations were wrong to have in the first place. I still think you will go to college but maybe not full-time and probably while you are still living at home. Your path to independence may look different than that of your peers but we’ll find something that works for you. You will not fit into a one-size-fits-all future pathway, but then, why would I want you to?

I still have my worries.

I wish we had a larger safety net (financial, emotional, etc.).

I wish the world was different: more funding for people who need it, more acceptance of differences, more kids who would invite you to their birthday parties. I honestly don’t know what would happen to you if something happened to me. How would your needs be met and by whom?

Would you get to stay with your sister, who according to you is your “bestest friend”?

But if I’m telling the truth, my biggest worry is that I am not the right one to raise you. That someone else would be more patient and understanding, would somehow love you better. So what I want to tell you is that maybe someone else could love you better but no one could ever love you more.

I’ll tell you which numbers mean the most to me.

You say that there are 9 planets because you still believe in Pluto. Sometimes you say that you have 42 bad feelings and I’m not sure what that means but it seems like too many. You always have three superpowers but they are constantly changing. You have five people in your family: you, mom, grandma, Harriet, and Lucky (the cat).

And you are one of many people living on the spectrum, you are my one, and I love you more than numbers could ever capture.

Written by, Renada Rutmanis

Renada Rutmanis has two children: Holden who is five, and Harriet Rose who is one. She works in education and lives in Minneapolis.

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