As previously highlighted in our March 31 edition, April is Autism Awareness Month.

And while awareness of this mysterious condition is important, advocates for local children affected including Families United in Newtown (FUN) co-founder Linda Jones believe that education about autism is equally important, considering the CDC most recently reported that approximately 1 in 36 children in the US is diagnosed with an autism spectrum disorder (ASD).

According to widely accepted data on the condition, boys are four times more likely to be diagnosed with autism than girls, and both genetics and environment may play a role in which children are affected.

Each week during April, The Newtown Bee will feature a special report on autism awareness and education, featuring sources from both FUN, and Newtown Youth and Family Services, which provide several popular and effective programs supporting local young people on the spectrum.

For the first week of coverage, we are bringing you first-hand observations from Amanda Perna, who is among the growing number of local parents of children diagnosed with ASD:

Having an autistic child can be like having a child that speaks in a foreign language. You have to meet their needs and teach them without speaking their language. This past year, I realized how invaluable it is to read books written by autistic people, go on social media and websites that are led by actual autistics to learn from them. Of course, not all autistic people are the same, but it’s kind of like hearing from people with a different dialect.

We’re getting closer to the language.

What I realize more each day is that so much of the “random” language is not random at all. This morning, for example, my son brought home a library book that I’ve never read before. I was about to read it to him before school, but he kept saying, “Sock on your hand,” which made no sense to me. When we were not on the same page communication-wise, he started to get upset and started to whine. I then made a joke and said, “Sock on your hand” and proceeded to put my foot (I was wearing a sock) in his hand and said “Sock in your hand.”

We both laughed knowing that I was not supposed to take him literally, but I did it anyway for a laugh. When he was laughing, I started to read the book If You Give a Moose a Muffin to him and right there in the book, I noticed that the moose made sock puppets and that’s what he wanted me to do. It was an a-ha moment. I said, “Oh, you wanted me to make a sock puppet” — and he smiled.

They don’t all end happily. Sometimes trying to speak his language can be very taxing. I’ve always considered myself to be a very empathetic person, and believe leading by love and empathy is the only way to parent your child. The love is always there, but the most challenging part for me is the empathy because I don’t know what it’s like to have autism. What seems like the smallest thing or just something that I’m unsure of can set my son off into a meltdown.

Demonstrating love and acceptance is easier than empathy but acceptance was harder than I’d like to admit. I previously believed there should be a cure and now I can’t believe I ever thought that because autism is such a part of his identity — which I love unconditionally.

In some ways, it is still hard to accept autism because of my lack of understanding. I don’t want to hold him to neurotypical standards, but I want my standards to be high and not place any limits on what he’s capable of doing. This is why I find hope in going to autistic lead communities.

Learning about language preferences can mean a lot to people who are autistic. Although schools and community members tend to use person first language such as “Person with Autism,” according to the Autistic Self Advocacy Network people who are autistic tend to actually prefer “Autistic Person,” because it is part of their identity and they are proud of who they are.

This is also why they prefer the infinity sign over the puzzle piece because they don’t consider themselves a puzzle to be solved, although some parents and professionals might feel that way. I also find it uplifting that autistic people do not like the categories “high functioning “or “low functioning,” but rather speak in terms of their “support needs.” This is because verbal or nonverbal, they all can relate to each other and their realities. They do not tend to see each other as better than or smarter than someone else.

They’re just people.

When my son was first diagnosed as being autistic at three, the scariest part was not knowing if he would be independent and thinking about his future. These days, the autistic community gives me a lot of hope, despite how much adversity its members may face.

I have to remind myself to throw out the road map, stop comparing him to others (something I was clinically trained to do in my career for over ten years), enjoy my son, live in the moment and not care if someone might be judging him or my parenting.

This is a language we can all understand.

Next week, read about a locally-based effort to help educate emergency responders who may encounter individuals on the autism spectrum, and how they are learning to ensure those individuals are dealt with and treated effectively.