In the early days of my oldest son Jonah's diagnosis, I would disclose that he was autistic to almost everyone I came in contact with. I did this in hopes that it would account for his behavior while we were out in public and immediately stop the stares, comments, and unsolicited words of advice from people.
On one occasion, Jonah and I were at Walmart. I remember being in the first-aid aisle and he was looking for band-aids with a certain cartoon character on it. Dez was a small baby at the time, he was snapped into his carseat, on top of his stroller. To Jonah's dismay, there were no bandaid's with the cartoon character that he was looking for. He quickly fell to the floor and was in a full blown melt-down. Other customers in the aisle began to stare. The weight of their eyes added pressure to my chest. A woman approached us with a look of frustration on her face.
"You need to discipline that boy!", she screamed.
I was a mother of a newly diagnosed child. I was tired, confused, overwhelmed, embarrassed, frustrated, and I felt indescribably alone. I wasn't coming to terms with Jonah being on the spectrum and I was going through the grieving process. Tears were welling in my eyes but I pulled myself together enough to blurt, "He's autistic!". The woman's face fell from frustration, to a look of concern.
"What is that?"
"It's a disability."
"Does the other child have it too?", she asked, while pointing at Dez.
"No."
"Oh, I didn't know. God bless you."
As she walked away, she had no idea of how our interaction impacted me. I sat in the car and cried, wondering why my child couldn't be born "normal", wondering if I was strong enough to continually go through this, wondering if life would ever get better. Situations like this happened almost every time we went out and each occasion, took its toll on me.
While reflecting on being a young mother, I have realized that the time I had disclosed Jonah's diagnosis in public, was solely for the purpose of crowd control. It was a way to immediately stop the stares, the comments, and the judgement. Although, at that time, I had felt like disclosing that Jonah was autistic was educating the public about autism. In retrospect, I can see that it was actually harmful to Jonah and to the autistic community.
I harmed Jonah by having my first instinct be crowd control, rather than consoling my dis-regulated child. I was not attentive enough to him during his meltdowns. I shifted the situation from his needs to mine. Another issue was that I was not informed enough about autism to educate anyone at that point in my life.
I didn't understand why the meltdowns were happening and I hadn't figured out how to assist Jonah through them. There was no way for me to explain what was happening to society, other than saying, "He's autistic." By doing so, I unintentionally harmed the autistic community by trying to "educate" people during Jonah's meltdowns. I am sure that this was most people's first time knowingly encountering someone on the spectrum and this was their first impression. They saw a child kicking, screaming, crying, unresponsive, and completely shut down. They negatively correlate his behavior to my disclosure of, "He's autistic". This is now their image of autism.
After years of experience and research, having been through my shift of perspective about about autism, I handle disclosure in a different manner. I had recently taken Dez to Disneyland and had forgotten to run him through the routine of the day. This usually includes watching videos, looking through pictures, and talking about what we are going to be doing for the day. After leaving the car in the hotel parking lot, we made our way to the sidewalk to start our trek to the Disneyland entrance.
Dez bolted down the street screaming and yelling. I was able to catch him in front of a Denny's. I quickly engulfed him in my arms, sat him in my lap in the middle of the busy sidewalk, and started applying deep pressure and talking to him. After he calmed down, I began explaining the day's routine. I explained that we were going to Disneyland, showed him pictures of things that we were going to do, and referenced the YouTube videos he watches. People were staring as they walked by, some had stopped, others had to walk around us. There was no disclosure that day. My main objective was to help Dez enjoy Disneyland, stay regulated, and to respect and facilitate his unique experience.
My current view on the public disclosure of my sons' diagnoses, is that we don't owe anyone one (besides medical, some school faculty, chosen family/friends, etc). My sons have the right to experience the world in their unique way and society should respect that, as they respect the experience of neurotypical or non-disabled people. I am not saying that disclosing in public can't or shouldn't happen, I am saying that it doesn't HAVE to happen. If choosing to disclose, as parents of autistic children, we should be cognizant of how our disclosures affect our children and the autistic community as a whole.
You’re an amazing mother!