I recently wrote about how I was having trouble fitting in with the autism advocacy agenda. I see a lot of target phrases and images that don’t really mean anything to me. One of the reasons is that I am learning that I am probably an undiagnosed high-functioning autistic adult…one of many that slipped through the cracks during a time when autism was a silent entity among us. So for me, this issue is very deep and complicated. It is hard to sum it up in to a sentence or an image or a single idea.
But an even bigger reason I have discovered is because every autistic individual is different. And every experience with autism is different. You could enter 10 rooms in a day. In each room was an autistic individual that you spend an hour with. By the end of the week, you could honestly say that every experience you had was completely different than the rest.
There are many common symptoms of the autism spectrum disorder. Difficulty with sensory processing (touch, taste, smell, hearing, and/or sight are all turned up), expressive behavior (emotions, language, thoughts being trapped inside your head), social skills (not being able to read body language and tonal expressions so that you know if you are making someone uncomfortable or if they are being sarcastic), and communication (similar to expressive behavior…you know what you want to say but your body doesn’t know how to make the words a reality).
These are just a few of the big indicators that professionals look for when assessing an individual for autism. But they are BIG categories. Imagine the differences you would see in just a change in sensory processing. How different would a child who has hypersensitivity to hearing be from a child who has hypersensitivity to touch?
This is why no one understands autism. Even people who have been learning about autism their whole life cannot tell you that they know everything about autism. Doctors who treat autistic individuals for years can have a new patient walk in the door every day and see a completely different scenario than they have ever seen before.
This is also why I think that autism advocacy is having so much trouble. Every child that goes to an average sized school in this country will be in a school with autistic children. These are the children who your children will come home and ask about.
Yesterday was the 4th of July and it made me think about the freedoms I enjoy by being a United States citizen. This also made me think about how proud I was that all races, religions, and sexes have won their rights under our flag. This has been on my mind a lot lately because I think we fell short of our goal for disability rights. In the past two weeks, I have seen several cases of people in the workplace being treated poorly because of a medical work restriction. A few years ago, I hurt my back, had to go on work restrictions, and was treated horribly by my boss and coworkers.
I also saw that there was a study done by the University of Colorado that said for the first time in decades, federal spending for disabilities is on the decline. Right now if you have a disability that is concrete and visible and clearly understandable, people have been taught that it is important to be compassionate and believe in your right to be treated fairly and respectfully. This is a wonderful thing that our country has done. We did, however, drop the ball. When it came to the hard to look at and the socially awkward, we turned our heads, because no one wants to fight for someone who does not inspire positive emotions in us when we come into contact with them.
So where does that leave us, the mothers and fathers and caregivers and family members and doctors and friends and people living with autism? It leaves us with a very unpopular cause that has millions of perspectives instead of a single vision. It means instead of being able to only focus on being Tyler’s mother, I have to spend a serious amount of time fighting for insurance coverage, finding facilities that will see him, knowing that instead of fighting for the best teacher in the school I will be fighting to keep him in school, advocating for a cause that no one knows anything about, swallowing my pride every time someone thinks Tyler’s problems are the result of bad parenting, holding him for hours because the park was too stimulating, and going to the store in the middle of the night because it is summertime hot and Tyler will only drink one kind of drink and we accidentally ran out.
Do you know what it is like to be so uncomfortable when someone looks into your eyes that it can physically hurt? To not realize someone is making fun of you in front of other people until everyone starts laughing? To want to play with the other kids, but to not know how to? To stand in a room and realize that you are, in fact, invisible? To walk into a crowded restaurant and to have the noise and the movement become so overwhelming that you start to sweat, your heart starts to race, you cannot think, and you only want to run? To go through your entire high school experience and never have someone save you a seat in the lunch room?
This is a person who sees a part of the world that you will never see if they don’t show you. This is a person who could be your best friend. This is a person who needs help where little help is found.
The painting at the top of this blog is something I made today. I was thinking of my The Bird and the Fish story when I painted it. I have spent days planning it and trying to come up with what I was going to call it. Every time I came up with something, it was a paragraph in length. The point of the painting is that if the bird became a fish to be with the other fish, he would lose the forest. If Tyler were to wake up tomorrow without autism, he would lose what he has gained by having autism. He would feel less. He would see less. He would not be held captive by his boundaries, but he wouldn’t excel while within them. He would not be Tyler.
There is a saying that I hear a lot in the autism advocacy world. “Different…Not Less.” I didn’t get that until today when I finished my painting and realized that those three words held the point I was trying to make. Do they say everything? No. But now I understand them and when I see them in my mind, I see the image of what the bird would both gain and lose by becoming a fish.
I don’t want Tyler to become a fish, but I do want what all mothers want. I want him to be happy. I want him to succeed in life. I want him to love and be loved. I want him to feel a part of something. I do NOT want him to feel alone, as I have felt for almost all of my life. But I don’t just want this for my son. I want it for all adults and children living with autism. I never want anyone to feel alone, to feel trapped, to feel unwanted. I also want to be able to express to the world a unified front for autism advocacy, because until that happens, we are just millions of voices clamoring for your attention instead of a single voice of authority that the world can see and understand.
Until that time comes, I am just one of those many voices. Not even a very loud voice at this point. But I am doing what I can and I am following my heart. This may not be a cause that inspires the masses, but if in any way, anything that I have said has inspired you…in this or in any endeavor for the good of people, please consider donating some time or financial support to this inspiration. If you would like to help me, please consider going to http://www.walknowforautismspeaks.org/arkansas/rflinchum to join my 5K Walk Now for Autism Speaks team or to contribute to our fundraising for Autism Speaks.
As always, Thank You for visiting my blog,
(c) Rachel Flinchum 7/5/2013