April Blues

I have to admit, I am torn. April is almost upon us and it carries no significance to many. Easter has passed. Spring Break is a memory. The next big thing is Memorial Day and the end of school. Unless you are involved in Autism Advocacy.

Some people I am friends with on social media support Autism $peaks. The ads pop up telling me who likes the group. Then I wonder several things. Should I attempt education? Is it any of my business? They have a right to their beliefs, right?

Why do I boycott A$? I mean, they are internationally recognized, a non-profit and, well, they have a great PR team. What they publish makes sense in a way. If I were a young, or frustrated, parent….yeah, they make sense.

I would walk miles, collect pledges and wear blue. I think back 19 years and it would have made sense to me. These people want to help. They want to understand. They want my child to have a better future. Right up there with Uncle Sam, mom and apple pie.

Now, I can see things differently. A$ has only been around since 2005. Their message is that Autistics should be pitied and their carers should be pitied. Autistics have no quality of life. Autistics can’t function.

The Autism community has many divides in it because of these statements. Parents want a cure. They want a better life for their child. Who wouldn’t? Autistics try to speak over the cries of parents who state their needs are more important than those of Autistics. Parents tell those voices that they have no clue….that their child deserves better.

News flash….Autistic children grow up to be Autistic adults. Those voices that are being silenced now represent the voices of children who should be heard. By shouting over Autistics, parents are silencing their own children. A$ supports the idea that a parent deserves more….that their child is a burden….that the child won’t understand anyway.

But we do understand. Far more than we are given credit for understanding. Humans feel love. And they feel hate. They can tell when someone is dissatisfied with them. While your child may not speak, you are being told what is important. But if you listen to A$ for parenting advice, you are receiving affirmation that you are more important than your child.

So, no. No to changing a light bulb or the color of my shirt. No to supporting an organization that feels a cure is a fix. No to donating money that is being used to support a corporation that silences the very people it purports to support.

I’m no longer a naive young parent. I have two Autistic young adults. I was diagnosed Autistic three years ago. The message of A$ is that I have no value. My children are also without value. Yet, the three of us are successful in our professions. We live independent of government support. We love, feel loss and celebrate. Our lives are full of meaning.

It’s your choice to listen to A$. Your choice to give financial support. Your choice to make your children into burdens instead of celebrating them as individuals. I urge you to choose to support your friends and family instead of a corporation. If you want to give money, give locally to agencies that support families.

Listen to Autistic voices. Every person can contribute to the symphony that is life. The contributions may look different, yet each one is an integral part of the entire movement.




Over time, you learn more about things going on around you, just because they are part of your life experience. If you take the opportunities to learn, then your knowledge base because both wide and deep. Unfortunately, some people fail to learn and consequently are doomed to repeat their mistakes a la “Groundhog Day.”

As I write this, I am sitting in an outpatient surgical center waiting for my husband to have a relatively minor procedure done. All around me are the standard warnings about wearing a mask if you have cold/flu symptoms. Wash your hands frequently. Make sure your trash is thrown away. Big, bold signs with pictures for those who can’t comprehend the words.

Moving into the pre-op holding area I see more signs. The “5 Moments of Hand Washing” is particularly prominent. I guess this is where the downside to being medically involved comes in. The pre-op nurse appears to not understand the importance of basic sanitation. I didn’t see her wash her hands even once. She pulled on gloves…and then picked things up off the floor. She pre-filled syringes of lidocaine and dropped them into a workstation drawer. She dropped an IV set on the floor and picked it up for later use. Sharps were thrown in the trash instead of a sharps container. The whole time I wanted to say something, but I’m trying to not freak out on my husband, who I’m sure is freaking out in his own way.

To answer your question…I’m sure these centers work great for most people. Personally, I’ve had the “it only takes one germ to kill you” lecture many, many times. You won’t find me signing up for this. It’s really kind of scary how casual the staff is here. Maybe I’m just hyper-aware. Constantly on alert for ways to reduce the risks I face every day. Yeah, I’m probably over reacting and high strung.

But, there it is. RTFP- read the fine print. In this case, just read the print. Make sure you understand what’s going on around you. Speak up. Don’t just randomly agree to things. We all have a stake in improving things. Anything from the safety of our vulnerable members of society to ensuring our personal safety. Don’t go quietly into the night. I will be filling out the satisfaction questionnaire when it shows up in the mail. After all, if you don’t make any effort to enact change, who will?