Families of autism, it’s not your fault

Connor and Cayden Long. A true and inspiring relationship of brotherhood.

Connor and Cayden Long. A true and inspiring relationship of brotherhood.

For years I heard a common phrase about parents with autistic children.

“It’s your fault.”

“It’s your fault your child is autistic. You didn’t love your son or daughter enough nor did you show them enough attention during their early childhood. ”

“It’s your fault they are not ‘normal.'”

Well to those “experts” who said that, you can take that opinion and shove it because I’m willing to bet most of you don’t know the first thing about connecting with autistic people. Sure you can give us a lecture on all of the symptoms, but when it comes to forging a trusting relationship, where do you begin?

For some parents who are raising an autistic child, it is not your fault. You were given the instruction manual for a Ford, but you were given a Ferrari instead. This makes your child no different than anybody else. It just means you will have a much different experience than everyone else. It also means you will have one hell of a ride ahead of you. When children are first diagnosed with the disorder, some parents feel anger, denial and guilt.

“Why did this happen to me? Is there anything I could have done to prevent this from happening?” 

In the tougher times, remember you are the expert of your child. You brought him/her into this world. You know what they like, what they dislike. What makes them tick. What makes them feel like they are on cloud nine. 

Today, while browsing around on the Internet, I found a TED talk video about a woman named Alicia Arenas. Arenas is a “glass child.” A glass child is someone who has a special needs sibling. Arenas’ brother, Mario, was severely autistic and violent. He would hit and bite her on a daily basis.

Arenas spoke of being a glass child from first-hand experience. I disagreed with her overall belief of glass children, because experiences with autistic people differ so greatly. While I disagreed with the tone of Arenas’ talk, I respect her for having the courage to talk about her experiences as well as some of her statements.

Arenas said the reason siblings of autistic individuals are called glass children is because people look right through us. We become the caretakers of the family. The needs of our parents and our special needs sibling come before our own. When we are asked how we are doing, most of us say, “I’m doing fine,” when we are not.

Maybe some siblings feel this way, but I never once felt neglected by my own parents. My parents explained Brian’s autism to me and I knew there would be times he would need my parents’ full attention. I understood it and accepted it, but I cannot say my parents looked right through me. They made sure to put aside time for me, to let me know that while Brian may need their full focus for hours at a time, they still loved me.

Brian and I are a year and a half apart. As we grew up, yes I did feel like I had to take on the caretaker role. When I grew old enough, my parents would ask me to watch Brian so they could go out for a few hours. I had a small idea about their daily lives, but I knew enough to recognize they needed a well-deserved break.

I still recognize that today, but now I enjoy spending time with Brian. He’s helped me appreciate the little things in life. Maybe it’s a walk in the park. Maybe it’s playing in the sand at the beach. Maybe it’s just realizing how lucky I am to be the person I am today.

 

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3 thoughts on “Families of autism, it’s not your fault

  1. Snow White

    WOW Tom – as the Mom in this post…. THANK YOU !! I too commend Alicia Arenas on the courage to speak about her “story”; and trust there are situations like hers that occur. What I find to be the prominent difference between you & Alicia is that you had the ability to see that Brian’s challenges were ones that you, personally, would chose to live with; therefore, you appreciated the freedom that came with being “Tom”! I am enjoying the risks you are taking with this blog. GREAT JOB. Love You to the Moon & Back!!!

  2. Snow White

    Correction in the previous post – meant to say that [Brian’s challenges were ones that you would chose NOT to live with.] Oops!

  3. Edgar

    T-bird, you are an amazing young man. You have had the pleasure of growing up with Brian. Your parents have done a great job with you both.

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