My daughter was diagnosed in August, right before she turned 2 years old. I did everything on the pamphlet that the neurologist gave me when he said, “Your daughter has autism spectrum disorder.”
I told my family she was already receiving Early Intervention, but we were now going to be getting much more, including intensive in-home therapies every day. I was praised and commended for being her advocate and getting her diagnosed early.
The pamphlet mentioned finding a support group; I looked and found none. I turned to the internet to find moms and dads like me. I knew I wasn’t the only one needing to talk it out and talk with people who get it, people who are living it, just like my family.
What I didn’t know was that there’s a great divide in the autism community. I didn’t realize that not only would I advocate for my daughter, but Id also have to explain how and why I advocate for her the way I do.
I see this great divide every day. I try to steer clear of it because I have a job to do. I am a mom, caretaker, wife, advocate, and a person living with autism. No, I don’t have autism… but my daughter does. I change her, not knowing how long she will be in diapers. I keep her safe by bolting furniture and keeping all doors and windows locked. My kitchen chairs have been on top of my kitchen table for almost a year. I take her to every appointment, and there are many. I sit down on the floor every day during her therapies so I can take it all in and learn it so I can teach her when her therapists aren’t here. Her needs come before mine and I gladly make it that way. I have a job to do!
I am an autism mom. Autism came in to our house when Zoey was 14 months old, and it didn’t just change Zoey’s life, it changed all of us. I’ve become her voice, caretaker, teacher and advocate. I’m living it with her, her sister is living it with her and her daddy is living it with her. It affects us all. We’re her support system.
So it baffles me when I see heated discussions in the autism community:
“You can’t call yourself an autism mom.”
“You don’t get it because your child is high-functioning”
“You don’t get it because your child isn’t severe”
“Don’t call me an Aspie.”
“I refer to myself as an Aspie.”
“Accept it, he or she is autistic.”
I’ve watched the fighting and I’ve seen people get mean and nasty. It’s sad.
A child with autism has a different journey and path than that of an adult with autism. Each person with autism is on his or her own unique and beautiful path. Who is anybody to judge how a person advocates for their young child, or how someone chooses to advocate for oneself?
Don’t we all want the same thing in the end?
Awareness. Acceptance. Love.
We need to accept that “if you’ve met one person with autism, you’ve met one person with autism.”
We need to accept each path and journey will be different, and the great divide isn’t helping. Everyone has their own story and how they choose to tell it. If we as a community can not accept one another, how can we ask the same from others?
Follow this journey on the Facebook page Life With Zoey.
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