I like spicy flavors! You’ll have to forgive me; I have a tendency toward strong flavors. I know that others on the spectrum are disposed to milder flavors, but I am disposed to stronger ones. My particular taste is ultra spicy. I have had to forgo some of it in cooking because my mothers has GERD. She needs milder flavors. We, however, have figured out she can take a milder form. Whenever we see Rachael Ray cooking, I always try to see if I can take the flavor to a milder form for my mother, and add spice later in my own way. It hurts me to see my mother in near-physical pain when she watches the spicier foods made. I am not the type of person to bring harm on anyone or anything. I could even go vegan in the future for this – it makes me wonder if I should. I digress. I think it all relates to what foods we were raised on, and where. My mother used to be just as much of a spice eater as me. See, my mother was raised in Kentucky, Florida and southern California, in the 1950s and 1960s. My grandmother’s cooking was generally flavorful, and she had a lot of cultural influences. I also had a lot of cultural awakening, considering I was raised in Orange County, California, in the 1980s. Of course, in the 1980s, a mild taco was exotic food. Now you have to go all the way to Southeast Asia, the Middle East or a World Market to find something European Americans consider “exotic.” The world dining room is getting smaller-but slowly. In my opinion, the world table can’t get smaller fast enough. I’d like to taste durian; I heard it stinks, but it has also been called the King of Fruits. I’d like to try it just even once. I’m adventurous.
“You are special Shelby. There are limits to what you can do.” -M’Lynn, Steel Magnolias
My mother was never M’Lynn from Steel Magnolias. That was the world talking to me. The world always wanted to put me in a box: “You must do this, or you’re not good enough, smart enough, autistic enough…” Yeah, even autistic enough. Why do they expect me to act like Rain Man all the time? I’m no math whiz. I need a calculator. That is not who I am.
My mother was always told, “Don’t put that label on her!” by the teachers and school administrators who did not get me. What would a label do? They thought it would limit my potential. Or did they not really believe I had autism? What limits were supposed to be on me? That I couldn’t talk? Sure, I talk fine, but sometimes for me talking is like trying to paint the Mona Lisa with finger paints and no brush. I do better in writing, I guess, and on social media. Of course, I’ve had my pratfalls, too many to count. Then again, these days most people like what I have to say, especially my friends. Making friends for me is just as hard as talking, but nobody sees that. There are more things I have found out to be true, contributed from autism. For instance, I thought I was the only one who came up with prepared scripts in my head for social situations. I do this very well. Perhaps this is why nobody sees my autism now. They are very ignorant. I run into this ignorance all the time on the net. “But he doesn’t look autistic!” (What does autism look like anyway?) And what do they say about me? “Genetically defective,” “retarded,” “But you (insert social thing here). You couldn’t do that if you were really autistic.” Always things to lessen someone as a person. Always things to set a limit. Well, I am here to say there are no real limits to a person’s potential. Yes, I know about Temple Grandin. Did you know she is also a rock star in the livestock industry? She has invented handling systems used all over the world for humane treatment. I mean, she is an expert on autism as well, but with these limits people place on us, she is not really autistic-but she is. The doctors who diagnosed her said so. And she has a career. What does that say about limits? They are arbitrary, and made to be pushed past. Who is with me?
Let me tell you a story of recovery. Recovery is not cure, or making an illness or disability go away. I must admit my mother has trouble with the word recovery, because it implies these things to her. I have autism, as I have said before, and know it will not go away, but I never let it hinder me for the most part. There were setbacks, and there were times I had to give things up, this tree is a good metaphor for anyone who is in recovery from anything that strikes them.
There was a young maple sapling near my home; in fact, it was near the mailbox I use. It was growing, tall and strong, but not as much as its elder relatives across the street. It would get there in time. However, a winter ice storm struck the area, and the weight of the ice stripped the tree down to a stump. It was no longer a “maple tree” in the traditional sense. Why did the garden tenders not pull out the stump? Nobody knows-I guessed it was a lack of money, but the stump stayed. The next spring, little branches grew out of the stump. The tree did not look like a tree in the traditional sense, yet it was growing. The maple tree resembled a bush. So, I called it the Maple Bush. In the summer, the Maple Bush’s branches had grown green leaves. In the fall, the leaves changed color and fell. In the winter, there was snow; the branches did not break. In the spring, more branches and leaves began to grow. In the summer, the leaves grew to a lovely green. In the fall, the leaves changed color and fell. In the winter, the bush rested. In spring, leaves and branches grew. Now it is late spring again. The Maple Bush is actually a tree, but it has not formed a traditional trunk as of yet. In time, the trunk will come back if left to grow.
That is the way with recovering from something that could be tragic. You could let go of the potential and dig out the stump, or you could try to grow again. I can tell you this, because I have been in “recovery” since age 3. I give the Lord and my mother the most credit, since the Lord gave my mother the insight to know what to do in growing my branches. I also give credit to friends I have made over the years. I did not mean to treat you harshly, or arrogantly, when I did. I am sorry. Whatever is making your life hard, whatever had cut you down to the stump, you can outgrow it.
““To forgive is to set a prisoner free and discover that the prisoner was you.” -Lewis B. Smedes
Of all the things I have struggled with, it’s being wronged I get the most trouble with. I have a tendency to dwell on things – and a way that information floods in at me when I think of one possible concept, like being hurt. Sometimes, I think of a wrong somebody did to me, and all the pain and hurt of every wrong comes to me, to torment me. It’s like a literal tsunami, only with information, instead of water. It even hurts at times, especially when someone wrongs me. So, in this vein, I can only turn to one thing: forgiveness. Forgiveness is certainly not easy, since the consequences of that wrong can stay with you for a lifetime, but it certainly does not excuse the injustice. I am forgiving those who have wronged me, slowly, and surely, so all this grief work is taking up a lot of my mental time and focus. There is a lot of work going into forgiveness, since it involves setting anger aside, saying goodbye to it, grieving out the pain, and then accepting the results. I will go into it with this considering my own experiences.
I held a grudge against the people who bullied me a long time ago. It’s been almost twenty years! I was bullied, right up into my senior year of high school. It seems now that they don’t affect me at all. In fact, many of them have come to apologize. It helps to forgive, to not let the pain of the past come into your present. Of course, bullying has its consequences. I was diagnosed with Post-Traumatic Stress Disorder later in my life. That’s ironic, you say. How can you forgive when they literally drove you crazy? That has been one of my larger challenges. The nightmares remind me of the wrong they committed, while forgiveness lets me know I do not have to dwell on it. At least I can figure out how to get away from them in the daylight. There are also ways to get away from them in the nighttime, but I still need to learn those. I admit, I am not perfect. I am trying, though. I don’t want the bitterness and resentment that has taken so much of my life away take any more. I am tired of being alone. I am tired of having no real friends. I am tired of having too much to complain about, and no real solutions. Most of all, if I am ever to go back to southern California, I want to know there is a fresh, clean slate to go back home to. I need forgiveness to get me back there.
My mother is a rare case. She just told me, as I was reading about murder-suicides involving children with autism, “I did what I did, and if they didn’t like it, oh well.” I thought we were in a tolerant society. She said, “Not really.” I then remembered how the teachers at my middle school told her not to talk about her with “that label,” as if she really only saw “that label.” Of course, what they did not understand, is that my mother only saw autism as a part of me, not the whole me. I have high functioning gifted Autism. It is not shameful, or really something to fear. Honestly, I try to conform to this world where most kids seem to learn communication and social skills by osmosis. But I still fail. My true self, the self I try to keep hidden, still comes out. I keep myself hidden because there is this stigma that tells me there is something very wrong with my existence. I start to feel like the mutants in X-Men. The mutants ask, “What did we do to deserve this?” The answer? “You were born.” What gives? I may have an answer. It’s not a complete answer, though.
For centuries, illness was treated as a punishment for sin, or a moral defect. The ill, especially the mentally ill or learning disabled, were hidden in the closet, so to speak. People still keep saying, “Don’t use the ‘A’ word,” of “We don’t talk about it.” On the internet, racism is prevalent, and people like me have been recommended to be ostracized for being “genetically deficient,” or even euthanized-murdered. Did terrorism go away by being ignored? Of course, the discourse about terrorism did not enter the American Psyche until September 11, 2001. At least, not truly publicly. I mean, sure, terrorism was there, and it would not hurt us, but if we ignore it, it will go away eventually. On September 11, 2001, two planes collided into the World Trade Center, another one into the Pentagon, and one was taken down by its passengers outside of Shanksville, Pennsylvania. That flight was believed to be headed for a crash into the Capitol. Did terrorism go away? No. It hit America. Terrorism hit America HARD. Autism, likewise, will not go away by being ignored.
Why? Why am I such a threat to society? Autism is not contagious. Autism is not a cold. Is it the meltdown? The meltdown is a reaction. A reaction overemphasized by a sensory overload. Why fear the different person? When did humanity become such cowards? Okay, maybe I am overreacting, but when there is a letter from a neighbor asking that a child be euthanized in 2013, is it that much of an overreaction? Come on, people. Throw off those outdated attitudes. Have some compassion for those going through it. We are suffering as much as those who care for us are.
My mother says she is proud of the way I turned out. I am verbal, and can look you in the eye. Most people don’t even “know” I have autism until I tell you. Of course, I had proper training in social graces, off and on, and it took. I still search for the right word, but I can probably tell you a lot on certain subjects. You never know what a person’s potential is, nor do you know how different or the same we really are.
I was recently reminded of a time when I was bullied mercilessly, so I decided to bring an archive up about that, and some backstory:
I got in touch with my old theater group recently, and it is mostly fun. There were people who really liked me and literally made friends with me right away. Considering that I was bullied throughout school, it still puzzles me that people would befriend me at all, even on Facebook. I am trying not to react to Facebook emotionally. After all, I now live in Kentucky, two thousand miles away from people I knew. It’s hard for me to make friends, and I am still struggling here. Perhaps it matters to me because of how much I miss them. Again, why am I missing them so much? I should be making new friends here, but it’s hard. I miss the old ones terribly. Then again, there is a lot I should be wary of. I remember being told that people made fun of me behind my back about the way I talked to myself-vividly. When I was told, I almost gave up theater and friendship right on the spot. I swore I would never contact those people again-they hurt me, they made fun of me. After all, don’t you make fun of people you hate? But somehow I recovered-maybe. Here is a little backstory on why I talk to myself: It’s what is supposed to be my “inner monologue.” Somehow I lost that when I got sent to UCLA’s neuropsychiatric unit as a child. I heard songs stuck in my head. I had a more severe autism at the time, so I could not properly tell them that I heard songs in my head. I guess I told them it was “voices,” because the next thing I get is stuck with some pill called Mellaril – and acting like a zombie around the unit. I barely remember how or why I convinced them to take me off, but apparently that is how I learned to make an outer monologue. I learned talking to myself was apparently less crazy. Of course, I remember very little of the time I was in the UCLA neuropsychiatric unit. I barely remember the feeling I got with Mellaril. Being an eleven-year-old kid stuck in a psychiatric unit is not fun for anyone, and certainly not fun for someone with Autism, separated away from her family. So that’s it. That is the reason I talked to myself. This is what I am working on now – making my inner monologue an inner monologue. I still get wary of people who have teased me and made fun of me. Sometimes I think of taking them off my Facebook Friends list. Usually I don’t, just to see if they have changed any. I don’t know about you, but I have always wondered about people.
Well, Xanga decided to go to a feed service, and I have twenty bucks to my name. How does that help? It doesn’t. I decided to bring my Xanga archive to you.
THE FIRST OFFICIAL QUESTION: What are the Effects of Autism and how does it Affect People? -A. Venetianer
Autism affects your senses, affects your social life, and affects your ability to communicate what you need.<br /> The senses are affected simply in this sense: you cannot block them out. They come on strong to you at the same time. Most people can block out background senses, but I myself cannot. I am like a recorder outside or in a crowded room. Everything is coming toward me so hard and fast that I can barely assess it. I am luckier than most in this, though, because many of us with Autism can’t; this is what usually leads to those infamous meltdowns we have. Now, we come to the social life. Often, the question is, “What social life?” because our various quirks and meltdowns often lead to a complete lack of social life. We have to be taught various social graces and body language like most people have to be taught math – hard and continually throughout our lives. We don’t get facial expressions, idioms, cliche’s, body language, or even knowing when someone is lying to us unless we are taught. We find it hard to make and keep friends. We are also bullied mercilessly because of our quirks. Because of this bullying, I am still shocked that people from my high school even want to be my Facebook friend. In that vein, I can now turn to communication. Communication is difficult at best. Start with the need to be taught how to socialize, add our quirks, bring the sensory overload, and add a dash of need to be taught to use our words – you have a recipe for disaster. That is why we scream when things are quiet. We are trying to tell you what we need, but we can. Sometimes, we win. Sometimes we lose. Most of the time, we get frustrated and quit. This is now Autism affects us.