In hindsight, I believe I knew that my son had autism just after birth while I was holding him at the hospital. Motherly instincts really do kick in that early.
I became vocal about my concerns to our doctor by his first birthday and by his 15-month checkup, I was asking our wonderfully optimistic pediatrician if he was going to refer me to a developmental pediatrician or if I had to find one myself.
I knew when he wasn’t smiling by the time he was a couple months old. I knew when he wouldn’t respond to his name or loud noises played in his ears but would run clear across my house when the Barney theme song would come on. I knew when he wouldn’t make eye contact with us.
I simply knew.
By the time he was 18 months old, we had seen the top professionals in town and we had been given our diagnosis. The moment after I heard the words “I’m not going to hedge a guess here, I’m sure he has autism,” I cried. I gave him such a great name specifically for business cards and now I wasn’t sure if he would ever get a job.
That was the one and only time I ever grieved for what my son may not become. From that next moment, and every moment forward, I decided to never put limits on him and allow him to thrive and be everything he was meant to be.
Seven years later, we now know how much progress can be achieved and how absolutely amazing these kids can be. I’m not blowing smoke, I am genuinely in love with and obsessed with our son. Over the years I stopped worrying so much about whether he would be put into general education classes or if he would like sports or group activities and instead I embraced and celebrated what he loved to do and what areas he thrived in.
So if I fully embraced who he is, then why did it take me until after his fifth birthday to use the word “autism”? There are a few reasons that caused me to make this decision right from the start.
By the time Nash was 2, other people could see his differences. He wasn’t waving back or replying to “Hello” and “Goodbye,” let alone more abstract questions like, “How old are you?” or “What’s your favorite color?”
The cashier at the grocery store had no qualms about expressing her opinions and it was becoming more clear each day that the secret was out.
But what was the secret?
Autism was my secret. People speculated but I wasn’t ready to share that word. I was very open about his “special needs” and his receptive and expressive speech delays, but I simply did not want to use the “A” word.
For starters, it is shocking how many people still go instantly to the movie “Rain Man” in their minds when they hear the word autism and I hated that comparison. Also, even though autism education is more and more present, many still do not realize that it is a spectrum and that there are so many varying degrees and levels of this disorder.
I felt that if I kept our description vague, then people wouldn’t make judgements before getting to know my son. I also wondered if that might be something he would want to share for himself instead of me sharing it for him.
As my son got older and I came across families that chose to keep their diagnosis a secret, I realized that the compassion other children had for those kids who were “quirky” but not identified, was very much lacking in comparison to those who were honest about their diagnosis.
I knew of a situation where a boy was exhibiting repetitive behaviors by telling the same story over and over and being socially inappropriate and the other kids around him were irritated and judgmental of him. If the other kids had been told that this child was struggling with Asperger’s syndrome, they would have felt entirely different about his behaviors. I know this for sure because of how wonderfully they worked with the special needs population.
I wanted my son to be able to share his own story if he wanted to, so for the first few years I had a hard time even being with other moms who would talk loudly and yell “autism” within earshot of others, in case someone I knew could hear it. It was a rough time for me because I’ve always been extremely open about all aspects of my life.
By the time my son went to kindergarten and I knew that he would he in a specialized ASD classroom, I felt it was time to share our truth. I personally had to ease into sharing our diagnosis because I felt my son deserved a bit of privacy. I also believed that the public knowledge was limited enough that some would believe he was more different than he actually is.
Then it hit me that no one really knows the personality of another person the first or second time they meet them. It was not necessary for him to prove himself to anyone during the first meeting.
By the time he was 6, I was freely sharing his diagnosis with anyone who asked. I now find myself telling people every day that my son has autism. Even when I could simply say that I have two sons, I choose to add the extra information about my son with autism.
I do get the pity look almost every time I share his diagnosis with anyone who isn’t in the special needs community, but I quickly tell them how amazing he is. He is absolutely our blessing, not our burden.
It took me longer than perhaps it should have to feel comfortable giving my son a public title. I worried about judgement and preconceptions, but coming out was the best thing I could have done for my son and for myself. I met amazing moms who completely understand the challenges we face, and my son is embraced by literally everyone he meets. Kids from school yell “Hello” to him if we see them out in public and his schoolmates volunteer to be his special buddy.
I genuinely believe that if I had stayed in the closet about his autism, he may have been accepted less because the other kids would not understand why he was behaving differently. Perhaps they would have been put off by him instead of embracing him.
I understand why other moms choose to stay in the closet but I cannot express enough how very important it is for the entire family to come flying out and shout it from the rooftops. We are proud of our autism!
A version of this post originally appeared on Birdhouse for Blog.
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