Severe Nonverbal Autism Diagnosis
“How we became familiar with the autism world was one event. Something that will never leave my mind. It is carved in my memory, stuck forever, and will always haunt my dreams. And it will give me all the strength to never silence my voice.
Let’s go back in time, where I knew nothing about autism and my life was in a fragile state of exhaustion. I never slept, and when I did, I would wake up suddenly. My mind was flooded with ideas, thoughts, and plans of how I was going to help my son Avery escape the hard.
I had this idea it was a simple fix, and we had to just leave the ‘hard’ and never go back to it. See, Avery got diagnosed with severe nonverbal autism and I felt like our world had ended when he got diagnosed.
All my hopes, dreams, and the future I thought he would have seemed to go gray. I was sitting in the gray and I didn’t know who I could reach out to. I needed to vent, I needed to talk to someone who understood our hard and my gray.
Fast forward a few weeks to me sharing about Avery’s diagnosis online and how we were struggling with sleep, vitamins, and therapy choices. I remember an entire day had passed and no one had commented on my post. It felt like I had shared our hard and no one cared.
It became clear to me we were alone in this and everyone else must not be struggling. It has to be something I am doing wrong, then. As quick as I went to my gray place where the tears flowed daily and never stopped, a notification popped on my phone – another mom was reaching out to me. Thank goodness, someone else who understands.
New ‘Mom Friends’
A simple notification I clicked on turned into a growing friendship. Now I was thrilled, because to be completely honest, I had no one who could begin to understand what I was feeling or what our struggles were. That’s just the way it is as a special needs parents. But slowly, I started to leave the gray. Slowly, I decided to share more about autism online. Slowly, I felt less alone.
Let me tell you, my guard was completely down and I was on cloud nine that I had gained a friend who knew, who understood what this life looked like. Then one morning, as I was trying to get my kids ready, I get a message that I was invited to a moms tea.
Ah! I was so happy; I was being included. Thoughts raced through my head. ‘What should I wear ?’ ‘I don’t drink tea.’ ‘Do I bring anything?’ Really, none of my thoughts truly mattered; the only thing that mattered was I was included in the mom’s group.
I remember it like it was yesterday. I wore my best outfit. I flat ironed my hair and wore makeup. I wanted these moms to like me and I was incredibly nervous. I was terrible at making friends and I just wanted it all to go perfect.
I was ready to gain some mom friends, but little did I know as I walked into this beautiful suburban style home at 9 a.m. sharp, my entire world would change along with all my thoughts on getting invited to any function in someone’s home.
I remember walking in, saying hello to the 7 other moms there. After a quick introduction, I knew I was the new mom. The living room where we all sat was cold. The living room felt heavy. The living room had this incredible emptiness to it.
My guard instantly went up when books started getting passed out with pads of sticky notes and pens. Before anyone spoke, I knew I needed to leave immediately. Something was not right about this tea I got invited to. Me getting familiar with the world of autism was an unsettling experience. When I tell this story, I say it was ‘The Dark Tea Party’ that made me find my voice I have now in the autism community.
As I sat frozen with tea in one hand, and my mind started to race into panic mode. I had a book on my lap I couldn’t even flip the pages on. I went numb, my eyes glazed over, I felt violently sick. This wasn’t your regular moms get together tea, where we share failed baking recipes and stories of our families.
I remember hearing, ‘What do you have to lose?’ It was directed at me. I was frozen, I felt like I couldn’t say words. If I did, they were coming out in no rhyme or reason and definitely without control. I remember hearing just before I could answer anything and get up to leave, ‘Bleach Therapy can cure anything Katie, don’t you want to cure Avery?’
The day I got included and invited to a mom’s tea, the day I thought I was about to make mom friends, was the same day I learned about the underground hidden world of bleach and autism. Which is what will haunt me forever. The next day, I gained the courage to find my voice and use it to share my story. I wanted Avery to leave the hard, but I never wanted this to happen due to the use of bleach or ‘Bleach Therapy.’
Beauty In Autism
I never got invited to a mom’s tea and I see that now. It is crystal clear – I was almost a part of a bleach cult. I was not ready to lose my everything to gain a friendship. Those moms were and this is what separates us.
I realized I never needed mom friends. I just needed to leave the gray and see the beauty in my son and the autism journey we are on. I love him, and this is what matters the most. And I will spend a lifetime advocating for him.”
This story was submitted to Love What Matters by Katie Emde of Journey for Avery. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more about autism:
‘I whipped around fast. ‘You leave him ALONE.’ He covered his ears, flapping his arms. The man snickered under his breath.’: 70-year-old woman thanks special needs mom for opening her eyes to autism, ‘You taught me patience and kindness’
‘I loved him when he had words, and when he lost them. Through the sleepless nights, endless screaming, and walking in circles. I loved him even when he couldn’t say, ‘I love you.’: Mom to son with autism urges ‘all you need is love’
‘You lift him up, no matter how heavy the world seems. You’re his safe place, his best friend. You became a hero in not just one, but two sets of eyes.’: Mom thanks daughter for being ‘hero’ to sibling with autism
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