Autism's Voice

I run around the internet all the time looking for things. I look for good deals on clothing and I look for the odd item that would tantalize someone’s imagination.
I look for things that my husband thinks would be “neat”. I look for parts for cars and articles on what silliness is going on in the world of politics. I check out what my friends are doing and I look at what’s on what’s on Amazon, I look at the latest techno gizmo and I look for stuff on Autism. I read articles and look at different opinions and check out message boards.

One day I was looking stuff up on Autism and I found a message board. What struck me was this was a message board that whose participants were mostly all teenaged Autistic people. What they said sort of felt like a slap in the face to a parent of an Autistic child. It was angry and antagonistic and in my opinion ungrounded. But sometimes the opinions of the young don’t have to be grounded in what we as parents see as facts but what they see as repression. They are teenagers and they seem to enjoy being among the throngs of the repressed. What these kids were complaining about was that they were not happy about the fact that people had an organization to speak for them, because “they could speak for themselves.”

And I thought about this, and I said to myself, “Wow, these kids just don’t understand what the problem is with that statement.”

So I wrote a letter to these children. Maybe if they are the kind of people who run around on the internet and look for things they’ll see it in passing.
I think it kind of tells them why that statement is sort of well….wrong.

Dear Child of Autism,
I couldn’t help but read where you thought that because you could speak for yourself, that you didn’t need a place to speak for you or for that matter anyone else to speak for you. Wow, you have come a long way haven’t you? Good, I applaud you for that. But there is something I want you to think about and I know that you will think about it because thinking is something that Autistic people do best. Now read this carefully because this is all about you and your history as a person with Autism.

Granted, you can speak for yourselves. However, there are countless throngs of autistic people who can’t. Some autistic people can speak but can’t speak well enough to be understood without help and some autistic people are so young that they must have a voice through their parents.
See, for starters, if we hadn’t spoken for you from the beginning, where would you be? Undiagnosed and wondering why you couldn’t cope, unable to do anything about it because everything you did was something someone was telling you to stop. Wondering why people walk away and don’t want to hear what you have to say sometimes, and wondering why you obsess over things. Wondering why you’re not able to handle going to a parade or a party and questioning why people made you sit among groups of people during the holidays and tolerate it. You would be dealing with teachers who didn’t work with you to bring you to your full potential, and you would be ignored as being difficult or worse. Worse, is being looked at as less of a person than the individual sitting next to you who might or might not be as smart as you are but who was thought to be superior because of the way their brain just happened to be wired. Even though yours was wired in a way that is just as wonderful.

A long time ago, people with Autism were put in psychiatric homes, some were institutionalized as children.
I saw my cousin go into an institution. She died in the institution, and the first time I ever saw her, was when she was in her late thirties, at her funeral.
I was told, when my son was diagnosed, that I could leave him at the mental hospital if I wanted to…In fact I had family members that told me he would probably have to be “put away”. Think about that for a minute- Just a minute.
And if you went to school, which would be a big “if” they would push you through school and chances are you would never understand what happened. Why was life so hard for you? People would criticize without knowing, and hurt without thinking. And they wouldn’t understand what was going on with you, and they wouldn’t do it out of malice; (although some might) most would do it out of ignorance.

When they wanted to put my son in an institution I wouldn’t do it- I love my son- I will fight to the last fiber of my being for him, I will exhaust every inch of my life to make his the best in can be. I will anger people and I will alienate my friends and family if need be, because he is who he is and he is valuable in his own right…And if the world can’t meet up with me to help, then I will change the world for him.

When we reach out to each other, and try to lean on one another, it’s about being a united force. It’s about what your parents and grandparents and their friends and their work mates and your teachers and aunts and uncles are all striving to do for you, to help you make you the best you that you can be.

This is why we needed to speak for you; as a child, as a teenager, as an adult even.
There is power in numbers and we need each other, even though you want to pull away and go down your own path. You-You children right now, in this age, are so lucky to have parents, teachers, brothers and sisters, aunts and uncles and grandparents and great grandparents, that have strived to make your voice heard. We are the ones who have worked to make your issues known and get you the services and programs and teachers that could help you. We’ve worked and screamed and spent countless hours and dollars to make sure you were acknowledged.

The reason I have time to go on the internet to find things is because I gave up a career to stay home, to be there for my son. I have alienated my friends, I have made people angry and I will continue to do so for my child. I love him- and fought for him and it didn’t matter to me whether he wanted me to or not. And it will never matter to me whether or not he wants me to fight for him; I will continue to do so even after he leaves home.

God bless those who love you and will stand between you and world with a sword and shield and protect the right for you to be the person you are, treated well and fairly. God bless those who will jump into the fire to take on the evils of this world and you should praise God for the fact that you have been given such a gift. Thank God you live now. Because, being teenagers you’ve never known a world that doesn’t know about you.

So before you condemn us for trying to take away your right to voice your opinions to world, understand that the reason that you are able to convey these thoughts and feelings are because we were your voice when you couldn’t speak.

Thanks for reading this,
A parent of a twenty year old Autistic man