I’ve always been different. According to my grandmother, I learned how to talk before I could walk. By dates in workbooks my mother used for me, I learned to read and write before I was two.
But socially, I was inept. I had no friends that I can remember throughout school, except for one or two who had no one but me to befriend. I did things by myself; I preferred it that way. I avoided social contact, I buried myself in books, and in many ways I looked down on the other kids. (This attitude didn’t help.) They were very, very different from me in ways I could often not express.
I always thought that it was because I was geographically isolated from my classmates; I lived far out on a farm with an area code long-distance from any of my schoolmates; physical and even telephone relationships weren’t really an option. Yet as my brothers started growing up, I saw that they had no trouble making friends. So I decided it was because I was too smart.
Though I suspected my brain was different from everyone else’s, I just figured I was geeky. I never thought it could be an actual organic difference. But apparently it was, and is.
Autism in Adults
There has been an explosion of autism diagnoses in the last five years or so. Some blame that on mercury-based vaccinations; others, on the geek-marrying-geek syndrome prevalent in Silicon Valley. I think I know better.
I think it’s because – and only because – the definition of autism has been broadened and deepened to include tens of thousands more people. There aren’t more autistics, but rather the definition of autism has been extended to a group of people who were formerly thought of as just weird or geeky.
When I read about autism as a child, the kid suffering from autism – it was always a kid, never an adult – wore a plastic helmet to keep him from bashing his brains out. He sat in the corner, never played with other kids, engaged in rocking behaviors, didn’t speak.
Today, those who have autism seem much more normal. My son, diagnosed a couple years ago with PDD/NOS (the autism umbrella diagnosis), is polite, charming, and helpful. He has plenty of friends in the neighborhood – none deep, but certainly there. But none of his friendships are deep. Instead, they rarely advance beyond playing cards or war. He doesn’t have a best friend, and probably never will; the concept does not interest him.
I’m the same way, largely. I have many acquaintances who love me, but few friends I would depend on (outside of my husband). I function perfectly well in society because I have taught myself to – but like standing on your head to shop for groceries, having to be around people frequently wears me out physically and emotionally. It’s not natural for me.
I think differently, and I process things differently. Though today I am fortunate enough to have learned how to cope with the world around me, when I was a kid I didn’t do so well. I have found that I’m not all that unusual; many adult autistics, even those who never were lucky enough to have interventions as children, live relatively normal lives.
Problems we all face include social isolation; a strong aversion to crowds; powerful obsessions that switch periodically. Recently, I read some information another autistic person wrote where she said that when between obsessions, she was very anxious, suicidally depressed, and even hurt herself. Obsessions, she stated, gave her a high. Though I don’t swing quite that far, that statement really spoke to me.
Successful autistics aren’t all that rare, either. Temple Grandin is a brilliant autist (a term she insists upon). Perhaps her best-known book is Animals in Translation, written with a ghost writer who practically translated Grandin’s thoughts into something ordinary people could understand. Grandin states that she thinks like animals. She designs humane slaughterhouses, finding kinder ways for the meat industry to kill cows and pigs that are destined to be tomorrow’s lunchmeat.
She also loves animals immensely, and they love her. Why? She understands them. She perceives things the way animals do – a dangling chain, for instance, at a slaughterhouse can cause a cow to balk because it looks different. A simple piece of trash on the ground, something no normal human would notice, stands out to a cow or to Grandin. It is this genius she puts to use in the course of her daily work.
My husband thought it was amazing she could accomplish this. I understood it . Sure, it’s weird that Grandin notices things in tiny bits like that. I do the same thing, mostly audially (something I recently found out my father also does). I can’t pick out noises in crowds, I can’t focus on single voices, if the noises are complex mishmashes I am hopeless. But in music, I can pick out individual instruments among others, and hear subtleties like “fullness.” I hear faint noises that no one else hears, though I can’t hear individual voices in a crowd like most people can. I also see tiny details that others skip over.
Thought processes are harder to explain. I think the way I do, not the way anyone else ever does, so I can’t really understand how others think. I have what I call lightning leaps – where I can see the right answers to questions or math even without doing steps in between. Mostly, I do that with words; I’m much more verbal than numerical, making me different in the autism pantheon (but because many autistic females have that skill, not all that different).
I also think with all emotion divorced from thought. This is nearly impossible to explain. Grandin does something very similar; it is her dispassionate approach that allows her to be an expert in her field. That doesn’t mean I don’t have feelings; it simply means that emotion and thought processes are very separate things to me. They are compartmentalized to a degree that I think they aren’t in other people. Many of my mental processes, in fact, are very compartmentalized.
But none of this was odd to me. What was odd, in retrospect, is how it affected my relationship with my youngest son Hunter.
When Hunter Was Diagnosed Autistic
For years, I insisted there was nothing different about my youngest son. I was not in denial. I simply didn’t see it. He had trouble communicating with everyone else – but not me. I understood his wants and needs. I could easily translate his sometimes-bizarre use of language.
He did things I did when I was a kid, refusing to write and focusing deeply on specific things. He had few friends at school. He played by himself, creating his own games that he enjoyed immensely.
When I got complaints and concerns about these things year after year, my primary reaction was annoyance. What kind of deal was that? I remember how boring other kids were when matched with my inner world. I lined things up as a child. I focused so deeply others had to tell me when the fire alarm was going off. I had nearly no friends, and didn’t really care except that I knew I was supposed to have friends.
In short, I thought the teachers were nuts.
But when his schoolwork suffered, when he broke down in tantrums and kicked and fought the teacher and principal, when I was called home day after day to control him at school, I agreed to have him tested. The results were dramatic, to say the least.
He was not, to the teachers’ surprise (but not mine), retarded in any way. Instead, he tested both very, very high and very, very low, depending on the skill. It was a classic mark of autism.
I started researching it. I still, at this point, knew little about it. But I certainly learned – about the unproven causation theories, about the way autistic children acted, about the different diagnoses. I determined that Hunter was closer to Asperger’s Syndrome than any other form of autism – but not close enough to diagnose. He fell somewhere in between.
And then, I found the AQ test – the Autism Quotient. Nifty! So I sat down and took it myself. I was just barely out of the autism range. This was shocking to me – and then I realized something else.
There were dozens of behaviors I had programmed out of myself – tics or social interaction issues, ways of walking, ways of dealing with stress. I had programmed into myself a system of manners, learning all I could about body language and expression and social chitchat. These were all things that came naturally to others – not naturally to me. But the test was checking me after I’d learned all these things. I had never taken it as a teenager.
So I sat down and re-took the test, answering questions the same way I would have when I was sixteen. The results: very clearly in the autistic range. I took this to a couple of different counselors who worked with Hunter, and after discussing his case and the way I worked with him, they agreed: I probably was autistic. Like most autistic adults, I self-diagnosed after having a child diagnosed with autism – and professionals listened to me and concurred.
How I Changed Myself
Most of my internal changes were gradual, and many were subconscious. Throughout my childhood, my mother and teacher complained incessantly about several things: that I was a loner, that I read all the time instead of watching television with the family (really), that I dressed my own way, that I wouldn’t do homework (it was stupid), that I didn’t hear people when they spoke to me (my perfectly-normal hearing was tested many times), that I lacked “common sense.
But I had a focus. I wanted to go to college. No one in my family had ever been to college, and after reading some books that featured college, finding out how much more fun it would be than high school, I desperately wanted a degree. It was my dream to be a college professor and teach writing.
So in high school, I set about changing myself academically. It was a focus thing. Instead of focusing on books, I focused on homework and classwork. Once I shifted that obsession, I was no longer failing; instead, I was constantly on the honor roll.
A note here: this is not an option for every autistic person. I was lucky; my obsessions rotated around reading and fantasy. I could spend hours by myself in a dark room, pretending to be Luke Skywalker’s sister or the real Ringbearer. Many other autistics are locked into obsessions much further away from the normal room. If a parent is lucky, he or she may be able to convince his autistic child that more reading or more math is going to help the child focus more on his or her obsession, thus shifting them more toward mainstream pursuits. Computers are often an ideal way to reach autistic children. But not every autistic can be pulled out, or convinced that he or she should pull out.
Anyway, I considered changing the way I dressed, and decided that was just dumb. I still dress my own way because I like it. I have never dressed like others except for job interviews or to make my mother stop pestering me.
The hearing thing was a much more difficult issue to work with. I went out into the woods and practiced, mostly — I listened to the sounds of nature, started learning how to pick them out, and then picked out human sounds, one by one. I turned it into a game. Gradually, my listening skills improved, but I didn’t really learn how to listen until I became a mother at the age of 20. Later, I made a startling discovery. I drink casually and socially, and rarely. One evening, I went out with my husband and had two pretty large margaritas. When I reached a certain stage, instead of things getting fuzzy, they became crystal-clear. I could literally pick out every conversation in the restaurant and listen to it. That, to me, means the listening issue really is organic, but it’s all in my brain.
The common sense was learned piece by piece, partly through learning as much as I could about logic, partly through learning to listen and empathize with people through practice. I chose to learn it. I chose to love people. This is another key — autistic people make these choices consciously, where it comes naturally without choice to others.
Today, I’ve been told that I either rub people wrong on first meeting or that they find me intimidating. Very, very few maintain a dislike of me for long; those who get to know me usually like me very well. This, believe it or not, is a problem. I will drop friendships if they get too close because they cost me so much emotional and mental energy. Fortunately, I married a very social husband, and he takes over a lot of the interaction, making it easier for me to back away when it overpowers me and then come back in later.
How Autism Affects Me Today
It doesn’t. At least, it doesn’t affect me now. As a child, I had several classic hallmarks of autism – problems with continence (very embarrassing indeed to a child as smart as I was), problems socially, problems with overfocusing, etc.
Today, I’ve trained most of that out of myself. I can interact socially provided I don’t overdo it, and I interact much more easily online or in writing. I underfocus these days ( I really wish I could re-achieve the overfocusing, believe me!) except with a few special topics that can completely captivate me, like the Salem Witch Trials. I seem perfectly normal, perhaps a little intense, but otherwise more or less like everyone else. At least, so I’ve been told; I don’t have a great perspective on the way others see me!
I don’t believe the current medical wisdom that autism is a disease or disorder. I also don’t believe that autistics can’t be “cured,” whatever that means to those who treat it. I have some issues and quirks, but if I didn’t tell you about me, you’d never figure out how much I’ve changed about myself.
I do believe autism is a different way of thinking, one just as valid and vital as the normal way. The problem comes when an autistic person must function in a world that is set up for people who think the other way. It’s hard. Imagine yourself having to function in a world of autistics, and you might get the picture.
Autistic people aren’t necessarily less capable than others, and are certainly not less smart. They do things in a different way. They reach the same conclusions using different paths. And often, because their methods are radically different, they rub people wrong socially.
With proper training and care, an autistic person can learn all the social rules of the normal world. He or she (usually he) can consciously function the same way most people subconsciously function. In fact, this sort of training is what current autism treatments focus on.
I’m not normal, and never will be, but I have a wonderful husband and three-almost-four children. I’ve worked at numerous jobs where I was always valued and respected, even by those who initially disliked me. I have a small circle of friends, which is frankly all I really have the energy for. And I have a rich inner life that I can express through my primary communications mode, writing.
The problem rises when a child is autistic and does not get the special help and training he or she needs. Medications do little for autism; dedicated and intensive education, however, do. There is some evidence that modifying diet can also help, and in a few children antiseizure medications do a world of good. But only rarely will medications help. Most interventions have to do with behavior modification – not just in the child, but in parents, teachers, and others who work directly with the child on a regular basis.
An autistic child needs his parents’ support more than anything else. They also need a school with small classes dedicated to his or her needs, with teachers and aides who are ready and willing to retrain him and help him learn to cope with the world around them. Only with careful and personal attention can the autistic child learn to cope with a world that sometimes seems like a foreign planet to him or her.
Untreated, autism can be a terrible and crippling syndrome. But when treated with education and understanding and love and patience, autism can transform into something quite different – a sort of genius that few people have or understand. That, not a cure, is what parents of autistic children should focus on attaining.
