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Autistics Shouldn't Have to Always Bend for the Neurotypical World

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In all of the autism trainings we do for police and first responders, I make sure to emphasize that autism is a lifespan disorder. Autism and the struggles with communication, socializing, sensory sensitivities and the need for routine don’t magically go away when an individual turns 21.

When we see the faces of autistic children in our newsfeed, on commercials and in ads, sometimes we forget these children grow up to be adults. Of course, they grow and change just like all neurotypical people do with strengths, progress, setbacks and challenges. I’ve seen so much change in my 19-year-old autistic son over the years, but that does not mean he is no longer autistic or that he has gotten “over it” or that life has gotten “better” or “easier” for him.

Sometimes, I forget how much I have changed too. Parenting an autistic son or daughter occurs over a lifespan too. It’s usually when I’m talking to a mom of a young, recently diagnosed autistic child who is scared, worried and determined, that I am reminded of my own strengths, progress and challenges over the years. I see bits and pieces of myself in all of them. I’m in such a different phase than these young moms desperately wanting their kids to fit in, have friends and be like everyone else all while trying to convince themselves that they have heard some kids get “used to,” “get better,” or “get over” things that are currently difficult for their child. I cringe — not at their innocence or ignorance, but at my own.

This journey is so new to these parents and the journey we all take is as unique as our child, so please don’t think for one second I am passing judgment on any of them. My gosh, how could I? I was that mom. Sometimes I still am that mom. But mostly I am not. That is because after years of experience, I have grown so tired and frustrated.

I’m tired of my kid, your kid, their kid having to conform, to mask, to fit in, to fight their imperfectly perfect biology to meet a norm set by God knows who. I’m so, so tired of it. Some days I have a great deal of respect for that little hamster on the wheel, running, spinning and desperately trying to get somewhere knowing full well, that if the environment changed, if that wheel could just break free of the plastic barrier keeping it trapped inside, so too would the hamster’s life, its reality.

I’ve grown and learned as Ryan has grown and educated me. I’ve listened, I mean really listened, to autistic adults who describe how exhausting it is to try and be someone they are not. The frustration they feel when even those who love them most, those who advocate the loudest, still sometimes fail to see them. I’m guilty of all of that and when I hear these young moms, my heart aches for the time when they will one day be as tired and frustrated as me.

But what I know that they don’t know yet is that the very same frustration and fatigue I feel, will light a fire in them that will burn down anything and everything in their path in an attempt to make the world more accepting, more flexible and more aware to the wonder of neurodiversity. One day, and chances are they won’t even feel the seismic shift, they will stop hoping their child will change for the world, but start fighting for the world to change for their child.

Yes, autism is a “lifespan disorder,” and as a mother, I will love, fight and advocate for the duration of my lifespan in the hopes that one day our autistic loved ones will no longer be asked to bend when we neurotypicals refuse to budge.

Originally published: April 17, 2021
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