A new diagnosis of autism brings up new questions. Now what? Read one mom’s experience finding community and learning to celebrate our unique selves.
It’s just one word. But if you’re reading this, it likely stirs up many feelings. If your child has just been diagnosed, you may feel relief. You may also feel fear or sadness. You may feel anger. You may feel like running away. You probably want to hold your child tight (either physically or in your mind) and close out the world for a minute.
The first time I heard “autism” in reference to my son, I felt an immediate lump in my throat. I couldn’t hear the rest of what the psychologist was saying. I felt annoyed at myself that I told my husband he didn’t need to come, and I felt confused. I was angry with myself for having these feelings. I did not want to label my child as autistic because it felt somehow too simple. As the psychologist spoke to me, my inner dialogue began, “He’s a person, he’s so much than a diagnosis. A list of symptoms does not begin to describe who my son is. You don’t even know him.”
I left that meeting, picked up all of my children and took sandwiches to the park. I left my phone in the car. I shut out the world out for a minute and held my kids tight.
In the months that followed, I joined parent groups on Facebook, I had school meetings, and my son and I became involved with a sports group for kids with autism. I still wasn’t sure if I agreed with the diagnosis, but I researched anyway. I learned a lot from the groups and I noticed that a lot of the questions that other parents had were questions that I had too. And I realized something that I thought I already knew: autism is a huge spectrum.
“If you’ve met one child with autism, you’ve met one child with autism.” (Dr. Stephen Shore)
You’ve likely heard that quote before. It floats around doctors’ offices, treatment centers and on-line support groups. I’d heard it many times, but finally I understood. The diagnostic criteria that define autism do not define my child, because my child is more than that.
And so is yours.
Those criteria, this diagnosis of autism, helps to piece together certain behaviors or preferences that may have seemed unrelated. In doing so, it helps raise our awareness and our empathy for our child’s experience and how hard he or she may be working at a given time.
A diagnosis of autism helps open doors for connections with other families. These families will celebrate with you when you realize you’ve experienced your first trip to the playground without any ‘incidents’ with other children. They let you cry when you get those calls from school that we dread, and they share advice for how to survive birthday parties. There is a community out there for you. Just like our children, we are not all the same either, so find the group that resonates with you, the group that you need at this moment in time.
A diagnosis of autism fosters access to services and supports. Increased awareness in the schools and community means increased sensitivity to our individual needs as people and children. It means previewing a classroom before all of the kids come in, attending the museum when the lights are low and crowds are gone, practicing boarding an airplane before the actual travel day, accessing sports programming that understands people can listen without looking sometimes and school programming that supports different modes of learning.
I still don’t know if I agree with the diagnosis of autism for my son. But I’ve come to understand that it doesn’t really matter if I do or not. For our family, the diagnosis has opened our world to a community and to resources and services. Sometimes they’re a good fit, sometimes they’re not. But hey, you meet one child with autism, you meet one child with autism.
We have learned that we have choices and more importantly, we are not alone. Most of all, I’ve grown to celebrate our place in a world of neurodiversity, of people with different brains, different ways of thinking, different passions, different preferences, different expressions and, in our family, different ways of sorting Pez containers.
Massachusetts friends: Your Autism Diagnosis Guide is Coming Soon. Check out the Louisiana Guide for tips and tricks while you wait!