Asperger's and Girls (18 page)

I would walk to school with him to find more information. I had learned from my own challenges that connecting the physical and emotional aspects of things was almost impossible. It was something we all needed help with. From walking with Cody I learned a lot.

I have a picture of my boys from the first day of kindergarten for the youngest one. We lived across the street, so they had a very short walk. I took the picture of Cody putting his arm around his brother as they walked. It is one I still adore and have on my desk. I did not know how autism fit into our life that day, so I thought that Cody was taking care of his little brother by having his arm around him and keeping him close. As the days went on, though, his brother became annoyed and did not want Cody to hold onto him. This issue became one of the “behavior problems” at school. When I started walking with him, I began to see that Cody needed something or someone to hold onto. About halfway to school he would turn pale, stop walking, sometimes stumble a little, then “space out” for a few seconds. After such an episode he would complain of being tired, thirsty, and confused. I began giving him water to take to school and sometimes carried his bag for him. Remarks by the teachers were rude and hurtful. I thought the kids were supposed to be the “bullies” but the teachers were the ones making remarks to us like “your mother shouldn’t be carrying your bag; you’re old enough to do it yourself.” I had to explain to them that he had health issues that made it difficult. Some would apologize but others made jokes about it and how to put something like that in an IEP. If I heard these things, I am sure he did, too.

Once I reported these symptoms to the neurologist, tests were done that showed that they were a form of mild seizures. Medication was not needed, but helping Cody to understand, and teaching others to watch for them, was. They also looked like they could be a “panic attacks” so I taught him how to recognize the feelings and not panic. Getting him away from cruel teachers was also a priority. The students actually helped Cody and liked him.

My friend Thomas helped me understand an aspect of autism that I have not seen reported much. There is a system of our body that is responsible for telling our brain and body where we are in relationship to the world and surroundings. From watching Cody, I am thinking that perhaps he has this problem but is not able to verbalize it for many reasons. Among these reasons I am sure is the same reason that I was never aware of anything really being wrong with me. I have lived in this body all my life, and it is the only one I know. I did not know I needed glasses until people around me noticed I was squinting. I did not know I could see better until I had been given glasses. Cody, as well everyone else on the spectrum, is dealing with things he does not perceive as being different or wrong. He looks down when he walks, always. The school said it was a sign of his “emotional issues.” Later I understood that this is something “depressed” people do. Cody is always watching his feet as he walks, because he stumbles and trips very easily. Now I have finally found a person that understands how occupational therapy can help and will start working with him. School, on the other hand, only offered occupational therapy related to schoolwork. Some schools still may not understand the other aspect of this therapy. I wonder if the “self stim” behavior, as it is often called, of rocking, helps them to feel where they are?

As I was working on understanding the physical aspects, I know that understanding the emotional aspects were important as well. But I had to address the complaints the teachers had. I was working on some alternative avenues to help Cody study for tests, knowing that he did well with testing. Modifications that were already in place for him were effective, and I knew his scores would help me prove he was not “stupid” (as they would imply by joking about his odd behaviors and failing grades).

The first issue was actually very difficult for me because I did not understand it well enough myself. When I found the person to test my son I was truly blessed. After testing Cody for several hours, and watching him closely, he found some interesting things. The most interesting was related to Cody’s inability to write correctly. It is a problem called “dysgraphia.”

We knew he had sloppy handwriting, but the end product was all they ever looked at. Cody could occasionally produce a rather neat handwritten project. Because of this fact, the school used it as “proof” that he was capable of such work. What they did not know is how much time it took him, or what the task involved: was it a written copy of something or was it something he had to write while listening? It also proved that he could “print” neatly but he was now expected to be using “cursive” and the only thing he could manage to write in cursive was his own name. Until he was watched during the actual process of writing no one knew he was writing most things the opposite way than he should have been taught. We are taught to start a “C” from the top and curve down; he would start from the bottom and curve up. He did this with all letters. This is why he could never transition into cursive. This discovery alone explained why he could not physically write cursive, and his problems with processing explained why he could not write while listening. His grades were failing because he was marked off for printing or not taking notes in class during lecture. This was a skill they demanded he learn because it is expected and a “skill he will need in college and high school.” More than once I had to explain to them, even after having it documented by two professionals, that it was equal to taking a wheelchair away from a child that uses one and expecting that child to walk to the bathroom. His grades did not improve, the teacher refused to change her decision and while she was filling out the forms to hold him back a year, the standard tests came back with scores above average. The officials overseeing our case could not support her decision. My poor social skills were obvious during that time.

Another day I was called in because they were going to suspend him for “refusing to do an assignment.” When I got there, everyone—the teacher, the principal, and the office staff—was already talking to him about his “behavior.” He was already beyond upset and withdrawn. I decided to ask the teacher to tell me her side. She was happy to offer “proof” that he was refusing and being defiant. Her evidence again proved my point: he has autism. She stated that all the children had to write a paragraph describing themselves and Cody refused to do it. We had already had several debates regarding all writing projects, and we knew that, because of his handwriting, all writing projects were going to be a challenge. But they had not accepted that aspect when this happened. She went on to tell me the entire story, and how Cody just sat there pouting and refusing to do it. She knew he could do it and tried to convince him to do it, but he still refused. Once the class was finished, she kept him after because he had “refused” to do the paragraph. It was after all the other children left that she pulled out a mirror and sat down next to him. She put the mirror in front of him and pointed to his face, the color of his eyes, the color of his hair, and the color of his glasses. Then, in less than five minutes, he had the paragraph done. Her point was that he could write the paragraph, and since he had done it with her help after class, she thought it proved her point. I was having a hard time understanding her point and how her story “proved” it, and I am sure Cody was just as confused. She felt this justified with her decision to give him a punishment, and she wanted my approval and support. I refused. Now I understood how the language problems alone can cause challenges, I also understood what other teachers had told me about “referring to himself in third person,” and that it was a great challenge for him to understand the concept of “me” or “self.” So of course a project like “describe yourself” would cause confusion for him, because he did not know what his “self” looked like until she brought the mirror over and pointed it out to him. Cody was correct; he could not do it. But he also could not explain why, and that is why he began saying “I cannot do it” and they began to hear “I will not do it.” She did admit that he had said at first he could not do it. Once he was pushed, he may have begun to act or behave worse. Wouldn’t anyone in that situation?

Each time I stood up for him, each time I explained the reasons for his behavior, Cody came out of his shell a little, out of the world that he had withdrawn into. I began giving him books about autism and Asperger’s, so he would know that he was not the only one. This is when I started to see how my eldest son became so lost. I stood up for him but not as well as I do for my children now. I am becoming educated and staying involved, working with the school system, not against it, to make a difference for my children, and every child after them, in a positive way. I would have never been able to do what I am doing for them now if I had not already had one child pushed through the system. Every day I see the future for my boys. I see it in my life and in the life of their eldest brother. I see it because we lived it and are living it. What I do not know is how to get us to the other side.

If you focus on what is wrong with your child, that is all you will see. If you believe this is a devastating disorder that needs a cure, then your child will feel the negativity around him even if he does not understand why. If you limit children with negativity or box them into a category, they cannot grow.

If you focus only on what is right with them you will only see that aspect. A parent in denial will not help anyone.

But if you use the diagnosis as a key that opens the door to understanding, the entire world will change for the better. Accept your child’s uniqueness, embrace her need for help. Find out how by approaching each physical, social, and emotional challenge for each individual and helping them overcome it.

Those of you who just “know” this social stuff naturally, please help us by slowing down and thinking about all the steps you know “naturally.” We need to learn them.

To those on the spectrum: we need you also to teach, learn, and help each other and our younger generation.

For Me,

a Good Career Gave Life Meaning

Meet Temple Grandin., Ph.D.

D
r. Grandin is one of the most respected individuals with high-functioning autism in the world. She presents at conferences nationwide, helping thousands of parents and professionals understand how to help individuals with autism, Asperger’s Syndrome, and PDD. She has authored
Emergence: Labeled Autistic, Thinking in Pictures, Animals in Translation
(which spent many weeks on
The New York Times’
Best-Seller List), and her most recent work,
Unwritten Rules of Social Relationships,
co-authored with Sean Barron. She also designs livestock-handling systems, improving the treatment of cattle and other animals all over the world.

Dr. Grandin doesn’t claim to speak for all women on the spectrum, but many will agree when she says that “emotional relatedness is not the major motivator in the lives of a certain subset of individuals with Asperger’s or high-functioning autism.”

Like many people on the autism spectrum, she has found her life’s satisfaction in her work. She has chosen celibacy because it eliminates the complicated problem of having to unearth the land mines buried in the social landscape (a problem shared by most people on the spectrum). Other people may make different choices—but Temple’s story should caution us all against automatically conforming to society’s relationship standards.

I
was asked to explain in this paper why I was never interested in dating. During my teenage years I never became boy crazy. My good friend Carol swooned over the Beatles and howled with delight when the Beatles appeared on the
Ed Sullivan Show.
I thought they were cute, but I did not have the emotional reaction that the other girls had. They were experiencing something that I did not experience.

At my boarding school, the big concern was making sure that none of the girls ran off in the bushes with a guy. I observed that certain rules were much more important than other rules. Students got in a lot of trouble for smoking and wandering off in the woods with a boy without a chaperone. From my observations, I figured out that if I could be absolutely trusted not to have sex, I would be able to get many extra unofficial privileges. It was at this time that I developed my rule classification system. The four types of rules are:

• Really Bad Things—murder, arson, theft
  
• Courtesy Rules—table manners, saying please
  
• Illegal, but not bad—flying my kite without a chaperone
  
• Sins of the System—sex, smoking, and drinking were the sins of the system for my boarding school.
  

Smoking and sex were sins of the system that had severe penalties. By carefully testing the limits I figured out that I could get away with many small infractions such as staying up past 10:00 p.m. and flying my kite without a staff member because I could be trusted absolutely to not smoke or have sex. Basically I gave up activities that many people consider central to life so I could do things I found more interesting. Being allowed to watch a science fiction movie past the normal 10:00 p.m. bedtime was more important than dating. I just did not care about the girlfriend/ boyfriend-type relationship.

I did have friends but the relationships were through shared interests. In high school it was horses and later in life it was friends in the construction industry. We had a good time because we built things together.

For me the most fun thing to talk about was how to build things. During my formative years I also saw a lot of marital strife. I never saw a marriage that I could picture myself being happy in. There was no satisfactory model for me to use as a template.

Career Makes Life Worthwhile

In college and later in life, I was happiest when I was doing projects. Mr. Carlock, my science teacher, challenged my mind with interesting projects. As a young adult, some of the happiest days of my life were working in equipment design where I had to figure out how to design things. Using my mind to create equipment that improved how the cattle were treated gave my life meaning.

Unlike most people, I am what I do rather than how I feel. This is a hard concept for many people to understand. Educational professionals and psychologists who have no contact with the technical industries find this hard to understand. In my work with the meat industry I know other people similar to me who live for either their career or their hobby. I had a good discussion with a lady in the computer industry about her successful marriage via shared interests. She met her husband at a science fiction convention and they liked each other because they both loved to talk about computer technology. She described romantic, candle-lit dinners, where they were so happy spending four hours discussing computer data storage systems. Their relationship was all about intellectual interests and not about feelings.

I am very concerned that many parents and professionals fail to understand that emotional relatedness is not the major motivator of the lives of a certain subset of individuals with Asperger’s or high functioning autism. They try to make us into something that we are not. I can learn social skills, and learning social skills is very important, but I can not learn emotional relatedness. They need to understand that having meaningful work is what gives life meaning. I have read and heard about some sad cases where teachers and parents were so concerned about the fact that a teenager did not care about marriage that they failed to develop the child’s intellectual life. One parent wanted to take her child out of computer science class to make him more social. The irony is that computer science class was probably the one place her child had friends and a social life. I told her that depriving the child of computer science class would be really bad.

Wide Variation

I have been reasonably happy even though I am totally celibate. Celibacy avoided a lot of complicated social situations. Sometimes I realize I am missing experiences that other people have, but I keep myself super busy doing many interesting things. My lifestyle is not for everyone with Asperger’s. It was easier for me because the brain circuits that made my friend Carol swoon over the Beatles are just not hooked up in me. Others on the spectrum want to get married and be emotionally related. It all depends which circuits get connected.