My autistic life
When I was only two years old, I started to sink into myself. No spoken words ever came. I developed a need to wrap deflated plastic Happy Meal toys around edges of things. It was comforting for me to wrap all the 45 degree angles with soft plastic. I was obsessed with water, too, and bathed constantly. My mom knew I was autistic before we ever got the diagnosis. When we told our extended family, they all blamed my mom. That broke her heart.
Then I started seeing ghosts and felt like I was slipping out of my body through the top of my head. This scared me so much that I started banging my whole body forcefully into the walls. I screamed and cried for weeks and didn’t sleep or eat much. I couldn’t tell them what was wrong. I still see ghosts, but now I can tell my parents who they are at least.
I was enrolled in an expensive autism day treatment program and my parents got SSI and Medicaid to cover the high costs of all the therapies that didn’t work. My mom took me to sensory integration therapy which was pretty fun, but basically a waste since I already did sensory integration therapy at home. We had a swing attached to the ceiling for me and a huge physio ball to bounce on.
I became aggressive often, scratching and biting my mom or dad. It was horrible, but I panicked a lot and that’s what happened. It was really awful for all of us. They started to fear me, but I was more scared then they were.
Then my mom started putting labels on everything so that I would know that things had words to represent them. The floor had a taped word, “floor” on it. The TV had a label that said TV, and such like that. It was helpful. Plus, I watched TV and already had figured out that words were spelled by watching the commercials that had letters and voice over announcing.
Then one day my mom went to a workshop and learned how to do facilitated communication, which I’ve written about in a few of these blogs. Finally I had a voice of my own. It was the best day of my life, all of our lives actually. It’s not that the new-found communication ended my behaviors, but it sure helped.
The next few years of my childhood were still difficult. I had (at some point) decided I needed to throw things and that all the stuff in the house needed to be thrown on the floor. Of course my throwing behaviors and spurts of aggressive behavior didn’t help, but most people disbelieved my typing.
The teachers didn't believe my typing was real until one day someone jokingly said, “Hey, Darcy, what’s 35 times 50” or something and I answered in an instant correctly. That was second grade. I didn’t fit in at school and my parents wanted me included in a regular education classroom and that worked briefly. The teacher started to hate me and my parents who had learned aggressive advocacy tactics.
In the meantime of course I kept throwing things everywhere and eventually my parents put all the books away in boxes and took anything breakable out of our living and dining rooms. They strapped the appliances like the TV and VCR to tables and walls with bungee cords.
This continued for years, but I did have my typing voice, even though, as I’ve mentioned in other blogs, even my extended family members didn’t believe the typing was me. The actual state of autism for me still is difficult to describe, but the two behaviors that have always stuck around for me that I still have is impulse control problems and OCD issues.
As the years went on I found that I was so tactilely defensive I couldn’t stand to wear clothes. I always took them off and it was impossible for my parents for over 15 years dealing with the constant nudity. If they felt socially isolated before, now they were completely unable to have friends or family over. They would have been judged so harshly and they were many, many times over this.
In the last few years I have changed dramatically. I still have severe autism. I’m still not talking with my voice. I still have really serious OCD and impulse issues. I pour water and coffee on the floor and I sometimes throw food, but now, finally I can stand to wear clothing and even put it on myself.
I hardly ever get freaked out by ghosts any more, just a little bit here and there, and now I have much more initiating skills. I pick up the letter board and bring it to the facilitator when I want to talk. This helps people believe my typing. I believe my autism improved dramatically from taking lots of vitamins, but especially probiotics. After a year on probiotics I am able to initiate better and wear clothes and handle the OCD much better.
I’ve accomplished a lot as a poet publishing and reading my work publicly with the help of my iPad with voice output. I have also taught about three workshops on autism to pre-med students. That was great.
My parents and brother could not be more proud of me. I’m a consistent daily blogger now and having a hoot sharing all my strange opinions with the world.
Finally, I know some people will believe me and some won’t. Not sure I give a crap about that anymore. I just want to write. You can believe me or not.
photo by Carolyn Reed