I feel tired, not because I am in in the middle of a never-ending cycle of seizures and insomnia.
I feel tired not because my brain and my body seem to be at war sometimes.
I feel tired not because I want to do what might be too much at this moment, when I should be resting.
All this is true but what makes me very tired is frustration.
I am frustrated, sad, upset and angry at things I have been reading – blogs from parents of Autistic children, blogs from people who think they can attack Autistic adults as if we are either whiny fakes or incompetent puppets.
I feel tired because people who never met me promptly dismiss me as a pitiful, incompetent human being, only because I am still somewhere in the middle of my very personal journey toward independent typing.
Those are people who put themselves in a pedestal, as if their theories are more valid than my experience, while denying and ignoring facts – and refusing to acknowledge that what they dismiss as “unscientific anecdotes” are real events in my life.
I decided that I will, from now on, ignore them because their bigotry is not as important as my growth, my goals and my life. If they don’t know me, their biased opinions are very unimportant for me to care about.
I also feel very tired every time the media talks about autism.
To the mainstream media, Autistics are either dangerous, possible murderers, or difficult beings whose lives can be spared in exchange for some relief to a “suffering”, “heroic” parent.
The media continues to ignore our voices, and I feel tired.
There is one thing that makes me so tired and upset, I need to shutdown and try to process my feelings. It happens when parents write and talk about their autistic children as if they are broken objects, undesirable pets, less than human beings.
They say they love their children, that they only want to make them more “normal”. I will question this.
Wanting your child to be your definition of normal is disrespecting their uniqueness.
Treating your child like the cause of everyone else’s pain, and yelling this to the world is disrespectful.
There can’t be love where there is no respect.
I know and understand that parents can feel overwhelmed and frustrated too. Some times autism is complicated. And I know that some Autistics have very challenging issues that affect their daily lives. I am one of them.
I know this because I was this child and I saw my parents go through stages of grief. But they accepted me as I am once they stopped feeling sorry for themselves and realized that their fight was not against autism. They understood that by fighting autism they were fighting me.
So they put their fighting energy to a better use. Their battles were focused on finding the best education, services and approaches for me. It was not easy and they made mistakes but I always felt valued, respected and loved by them.
Before my mother died, she could see how my life was moving in a good direction.
My mother always said: “Amy can!” She never painted me as an undesirable child.
Sadly, today, I read what some parents write about their autistic children and I don’t see love. I see resentment, selfishness and abuse.
One mother advocates for electric shock for her “difficult” child and resents the ruining of a picture by the “autistic hands”.
At the same time, she discredits Autistic adults like me as real and proud self-advocates. I am, in many ways, like her description of her child. But I was, and am, loved. If she does not feel like she has a happy life, it is not her child’s fault. If she can’t appreciate, understand and respect her child, she is the one with a problem.
I am happy. My mother was happy for me. My father and friends are happy for me – for who I am.
I wish violent outbursts, self-injurious behaviors were easy to understand and easy to address. But saying that you want your child to stop the self-abuse by allowing others to shock the child is torture.
Autistics will be autistics until we die. Better services, better approaches, better understanding of some medical issues are needed. But demonizing a child in public does not improve the child’s life. And electric shock is torture.
If you are one of these parents, it is not your child who needs help. It’s you.
Because no matter what you say, it’s not love.
Amy thank you for always shining the light at what is so important. You are such a selfless person, I hope you get the much needed rest, we need you always.
So well said.Thank you.
Feel better, Amy! Thanks for writing about this important topic even when you are recovering from a seizure weekend.
Thank you so much for sharing this amazing post of Amy’s.
I really enjoyed the blog as well. Thanks for posting, Judy.
Thank you once again for describing the issue so well. It’s always a pleasure to read your writing.
Very nicely said! You are right to be ‘tired’!
Amy, I am so sorry to hear about your seizures over the weekend. I hope you are able to rest and take care of yourself.
This post is terrific! Your presence on this earth has made the world a better place for ALL of us. That some do not seem able to grasp this, is their problem.