When I started this blog on January 21st of this year, I had some lofty goals. I was going to change the world. I’d write about my son’s condition and people would listen. They would learn about autism. They would change the way they perceived autistic children and their parents. People would come and read and pass on the story and the word could be spread, little by little. Still my goal. It’s just going to take some time.
And so for 24 days so far, I have torn off a tiny, little bit of my life with my son here and exposed it for what it’s worth. I’ve opened this forum to others to tell you about it. When I started this blog, some people knew about my son’s diagnosis and some did not.
We received the diagnosis in April 2010, so it had been nine months since we were pronounced an “autistic” family when I opened the door to my life and let everyone in. Funny thing about opening that door. Not everyone came in. Everyone has reacted differently.
Some of the reactions have been amazingly strong and supportive. Some have been lukewarm. Some of them took a long time to come forward. Some people who used to freely converse with me have now come to completely ignore and avoid me.
My husband and I were initially frightened by the diagnosis. We did not understand what the diagnosis meant for our son’s future, let alone what autism really was. Our journey to getting the diagnosis was just the first step toward an understanding of where life was taking us. We were not ready to let others travel this road with us.
We did not tell any immediate family members of the diagnosis when we first received it. We were busy processing it ourselves. None of our immediate family (aside from my parents) live closer than 100 miles away. We did not want them to be confused or upset by the news. We did not tell our parents who are in their late 70s. We did not want to burden them with worry over their only grandson. There is also our concern over whether they can comprehend the diagnosis. Even if they are completely understanding, the issue of elderly parents spending time worrying about their grandson keeps both my husband and I from openly sharing this information.
As time has passed, we have loosened our reigns on this information. First, out of necessity. I had this huge new change to my life and it was starting to consume my time. I could not work like I used to because I had appointments for evaluations and tests, therapies, and school district meetings. Explanations had to be made. Different people started showing up and spending time with my son. Their presence had to be explained and acknowledged. These were the first disclosures.
The rest of the disclosures came little by little. First, with friends who spent time with my son or me. Then, we told acquaintances we see on a regular basis, such as the coffee shop where I get tea every day of my life. These were relatively easy disclosures. And surprisingly, supportive and non-judgmental. Most of these people start their responses with telling me they know people who have children with autism. Autism is far more common than you would think. 1 in 110 children on average is diagnosed with autism, greater in males, at 1 in 70.
I don’t think there has been a parent who hasn’t wondered about who and how to tell strangers or people otherwise on the periphery of life about the diagnosis. I’m no different. I wonder whether I am doing the right thing saying something or not. Some of the more uncomfortable disclosures have come when I wanted to sign him up for classes. I had to tell complete strangers that I would need an aide in the class because my son has autism. That was not easy. The people at the gym class have been wonderful, open and welcoming. Again, they already had experience with an ASD child.
The whole question of who to tell or not to tell has nothing to do with shame. It has to do with reactions. Some people react with enormous support and understanding. But, my disclosure has also yielded me reactions of ignorance, anger, shunning and indifference. All of this can hurt my son, a child who is already struggling with differences that are elusive and consuming. Sometimes, we just don’t want people to know but we have to tell them so they can accommodate our child’s disability for any number of reasons. And to protect my son, we question who we will tell.
Still, despite all the supportive responses I have received, especially from one person, I still have received judgmental denials of my son’s diagnosis as well. These people may have thought they were helping me my saying that my son is fine and the doctors don’t know what they are talking about. (Yes, this happened). I have been told that my son just needs to be in school, with other kids and he will be fine. The people telling me this mean well but they simply do not understand that my son really has a disorder that originates in his brain. A neurological disorder. Yes, with strong early intensive behavioral therapy, when young enough, signals in the brain have a chance of getting re-routed so he can attend regular school and blend with the other kids. That’s a chance. I have to live with the reality.
I don’t want pity. I don’t want denial. I want my friends to be my friends, to listen and to talk to me about it once in a while. Is that asking too much? Sometimes, I feel like people have the wrong idea that I’m trying to raise money or that I’m complaining that I have a hard life or that I’m preaching. None of those things is true.
I don’t have a hard life. I don’t want to raise money and I don’t want to convert anyone to advocate for autism. I am sharing my life with my son just to share an understanding of one mother’s perspective of living with this disability. To give an awareness of what autism is really like and how our days are affected.
Someday, someone you know may tell you they think their child is not developing normally. They may tell you some of the symptoms that you have recognized me talking about here. You may be told by someone that he/she has just found out their child or their loved one is one of the statistics. And then, just maybe, empowered by knowledge, you’ll know just what to say. And that someone will thank you. And so do I.