World Autism Awareness Day

“It’s ridiculous. And it doesn’t help me and it doesn’t help him!” my friend shouted into the phone, tears breaking in her voice.

“What did they say? Are they saying this to you?” I asked.

“That he is perfectly fine! That he just need to catch up! That this is all in my head! That I want something to be wrong with him!”

The battle to keep her composure had been lost and she surrendered to the hurt and anger that had been sitting inside of her since her son’s teachers uttered their concern about the a-word — autism.

Melissa’s son, Brandon, is five-years-old. At the start of Kindergarten, his teachers voiced concern over Brandon’s behavior. When they first suspected an autism spectrum disorder, she was in denial. She called her mother looking for support. She didn’t receive it. In fact, not only had her family denied that Brandon could be on the autism spectrum, they chastised her for believing anything could be wrong with  her son, even telling her that things were all in her head.

“How do they explain the services Brandon gets through school?”

“I don’t think they even think about it. They don’t bother asking me about it. One time, my mom said that all teachers want to do is diagnose kids and put them all on pills to make their jobs easier.”

“Um, Brandon isn’t even on medication!”

“See how much she knows about my son!”

“What about the physical therapy he gets? Or the time in the special education classroom? What about the fact that his school psychologist wrote a letter so your landlord would be required let you have a therapy dog?”

“I don’t think they even care about the facts, Amy. They just think they know, and they don’t! It’s like they can’t accept him if he isn’t what they think is normal.”

I understood Melissa’s frustration. Like my daughter, Brandon was high-functioning. And just like Melissa, I dealt with denial in the early days of my daughter’s diagnosis, too, though mine wasn’t my family so when that relationship ended, dealing with the inability  of others to accept what teachers, psychologists, and therapists all agreed upon came to a halt.

Unfortunately, it is too common in families where an autism spectrum disorder is diagnosed.

I asked my other friends with children on the spectrum if they had dealt with denial from family members and they all said yes.

“I deal with it all the time from my husband. Some days, he gets it, but other days, not so much.”

“I dealt with the denial with my ex-husband. He tries to say that there is nothing wrong with our son. It didn’t matter that a psychologist had diagnosed him or that he was sitting right there next to me the first time autism was ever brought up with our son. He hasn’t seen him for eight years, but his new girlfriend suddenly knows what is and is not going on with my child and what we went through with him when we were still together. Oh, and by the way? She doesn’t even know my child.”

“For me, it was my in-laws. In their eyes, the only thing wrong was my parenting skills.”

“My pediatrician was the one actually denying it. He said my son was too smart to be autistic. MY. PEDIATRICIAN.”

“My friends denied it was going on and were so unsupportive. It was like they were afraid their kids would catch it or maybe they saw the way my son was behaving, noticed similar behavior, and were afraid of what that meant for their kids.”

“I didn’t deal with much denial, but it existed. Later, as more people understood what was going on I often heard things like, ‘I thought you were exaggerating or making it up but now I understand.’ So it became apparent to me that some of my family didn’t believe me but were polite enough about it to keep it to themselves, or more likely talk behind my back… mostly in-laws on that one.”

Last week, the CDC released new autism statistics, showing that now 1 in 88 children deal with the autism spectrum. By gender, 1 in 54 boys are diagnosed and 1 in 252 girls are diagnosed. These children and their families live in your community, attend your churches, go to your kids’ schools, are your co-workers, and your neighbors.

Some people ask why days like today, World Autism Awareness Day, are important. A few might even roll their eyes and snicker at yet another awareness cause, wondering what good awareness is really going to do anyway. The experiences of the men and women above, just trying to do the best they can each day, demonstrate just exactly how important days like today are. It is my hope that as awareness is raised, understanding will come next, and the experiences above will no longer be all too common, so families can face these issues together, so primary caretakers stop getting blamed, and communities can come together. We’ve all seen the power of community here in New Orleans, it’s my hope that kids and their families everywhere will get to experience that kind of acceptance, kindness, and support.

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