I’ve never been one to share the personal details of my life, I’m the opposite of an open book. My privacy is sacred to me. This was especially true after my son was diagnosed with ASD. So when my husband and I decided not to reveal our son’s autism to our family and friends, we felt we were doing the right thing for our boy. This may seem strange and bizarre, and maybe it is, but we had our reasons.
My son’s age was a factor, probably the biggest one for me. He was only two years old. So young, my baby. Did I want others treating him differently? Did I want him labeled by those who didn’t understand or know anything about autism? The answer was a resounding “NO.” I wanted the people in our lives to know him for who he was, a wonderful and sweet little boy. My son was not going to be fodder for gossip. In my mind, I was protecting him from the stigma associated with autism.
I wasn’t ashamed and I wasn’t afraid of what others would think. I felt I needed to get a grasp on what our life was going to be. I had to get through the endless phone calls with intake workers, the countless appointments and what felt like never-ending assessments before I could even think of sharing something so personal with the world. I had to educate myself about autism and take time to let it all sink in. How could I explain something so complex to others when I didn’t have a clue about it myself? This was my reasoning.
My son’s doctor’s and various therapists would occasionally ask “how has your family taken the news” and I would reply with hesitation “I haven’t told them yet.” I would always get a look of confusion and judgement. There was always a need to explain myself, they just didn’t understand. On the other hand, when I would share this information with other parents of children with ASD, most almost always said “I totally understand.” Some hadn’t told their families either.
It was as though I was leading a double life. I had endless opportunities to tell people like my mother and my sister – I speak to them on an almost daily basis. I would share all of the good things about Max, the ‘normal’ events and adventures in his daily life. But there was always a hole in my stories, something missing. I would leave out major details all because I thought I was protecting my son. For that, I will always be sorry. Had I just been honest with those closest to me, I would have likely avoided some of the stress and anxiety I had been feeling. It’s not something I’m proud of, but I can’t go back and change anything. I can only learn from my mistakes and go forward.
It took me two years to finally tell my family and my friends. Yes, two years. Why did I keep putting it off? Why did I wait so long? I’m sorry to say that I don’t have a concrete answer.
I’m grateful and fortunate that our families were very understanding and didn’t hold our two year secret against us. They were nothing but supportive and kind and they haven’t treated our son differently. My greatest fear of being isolated by those closest to us was all in my head.
If your child has recently received a diagnosis, don’t follow in my footsteps. My advice? Share the news with your family and those closest to you. You’ll be surprised at the amount of love and support you and your child will receive. You will need it.