Asperger's and Girls (17 page)

I learned early on that it did no one any good to take them with me on errands, like to the grocery store or department stores. I did those errands when I could leave them with their father or someone else. Now I will take one or both only when I have the energy and do not “need” to get it done, so I can teach them what we are doing. I also learned early that typical family activities were not for our family. I was fortunate enough to have a career that allowed me to work other than a typical workweek or day.

They had issues at school and we had a great school system that recognized their needs and helped them to achieve academically in spite of the challenges and without a formal diagnosis of any kind. They helped the best they could. Cody was doing great academically but was unable to function socially. For some reason, no one was worried about it. His brother was still in preschool but they took a special interest in his needs and enjoyed meeting them, even when his behavior was “inappropriate.”

The extra energy it took to keep the children from becoming out of control around others, like at school, wore on my physical health. I was falling ill to every infection that came my way. I was losing time from work and using up all my vacation and sick time. When the final straw hit, in 2002, I had no reserves. Suddenly, and without warning of any kind, my husband, at the age of thirty-eight, died of a heart attack driving to work. When I got the news, my professional mode kicked in, but so did my lack of social understanding. I was not at all sensitive to the potential pain my children would feel, I had no clue how they would react, I had no resources to draw on other than my own experience, personal and professional, and the need for straightforward, honest facts was all I knew. When I told them, their reaction hurt more than the news of his death. The pain is still present when I write this. Could I have handled this better?

The entire process was a fog. The youngest one, always accused of being oversensitive, would not stop crying. The older one, always accused of being a little “slow,” had no reaction. One would not go near the casket; the other would not go away. My eldest would not even attend the funeral. My daughter tried to help. Life held too many changes at that time. We moved to a less expensive place not realizing the effect the school system would have on them. I tried to continue work and school and all the routines we had, but my boys began having fears beyond the comprehension of most, and I was the only one that could help. I was the only one that understood their pain without any words—words that none of us could find.

I put my career on hold in order to finally figure out what the physical aspect of all our challenges were, why others did not understand us, and what to do about it. Autism diagnosis explains it very well, but even I was not putting the pieces of the puzzle together.

I had never really heard of autism, not even in nursing school, that I was consciously aware of—meaning it was one of those things that I may have heard but it did not register in my mind because it had been put in that file “to figure out later.” The reason I suspect that it had been spoken around me is because when I was introduced to the term, I had to know what it was. Perhaps my need to know was because of the relevance it actually had to my life. It was about a year before the death of my husband. A friend of mine had an autistic child that I never met, though I had heard about some of the problems. For some reason I needed to investigate. The overwhelming amount of information, the confusion with technical data and debates was not helping. My friend gave me the book by Thomas McKean,
Soon Will Come the Light,
and I immediately felt a connection but did not understand it. I found Thomas and began a friendship with him over the internet. Our life paths were very similar and we were both even living in the state of Virginia at that time.

During the time of our friendship I began to understand Thomas and aspects of autism, but not what the “problem” was or why it was tagged a “devastating disorder,” or why parents were sometimes angry and mean when it came to talking about their child with autism. Where was the pain and anger coming from? I did not understand

Looking back to my time with Thomas, before receiving our diagnosis, I remember a moment that could now be laughed at under the heading of “an autistic conversation.” Part of the reason I was confused about autism is that some of the common “behaviors” that were written about in the research were present in my son Cody. He was now nine years old, though. The behavior that was once his bounce and tip-toe walk was now a walk and rock with arms flapping. In school he was observed as “rocking in his seat” and “flapping his arms” on a regular basis. So I asked Thomas, seriously, if he (the “expert” on autism, according to the sticker on his book) thought Cody could have autism. Thomas did a very funny thing: first he asked how old Cody was, and after I told him, he stopped walking, changed the way he stood to straight up, his head became straight forward and up taller, and his voice changed as he stated, “It is formally diagnosed between the years of three and five. Cody is nine so he cannot be.” The question was answered and the topic was over. He went back to the way he had walked before and there was no further discussion. Now I realize how both of our communication challenges contributed to that, but at the time it occurred, I dismissed the possibility immediately.

Thomas has an amazing community of supporters that is helping him with issues of life that he could not handle on his own. I was welcomed into that community and they were there for us all after the death occurred, I will forever be thankful for his and their friendship. It was his friendship and the things he did around me and to me that made me begin to understand some of the things I had done “wrong” in relationships. I still had not put the puzzle together or understood the connection between autism and our family. It was coming together, though. The bridge connecting the two worlds was only a few bricks away from completion.

Looking for answers to understand autism, the physical challenges we all had, the emotionally charged circumstances and lack of social support, I turned to faith and was given a mentor and guide in the form of another new friend.

I found a retired physician located in the UK that had personal and professional connections with Dr. Lorna Wing. He was willing to discuss with me every issue that I needed to talk about, and after many months he guided the physicians working with me on aspects of my health. I know that his input saved my life more than once. The amazing details of that relationship cannot be easily described. The miracles would make a wonderful movie, but for now I will just tell part of what came out of it.

When my friend was not available to me his mother would fill in. She was an amazing woman that had already raised her children, one with serious health issues, including autism and a rare form of asthma. It was at that time that my son was diagnosed with asthma. She thought it sounded odd and instructed me as to how to treat it and how to record findings to bring back to the doctor. These findings led to the removal of his diagnosis and the many medications he was on. She also informed her son, the doctor, of what had happened in his absence. Having practiced with pediatrics, he asked for a full medical history of my son and then left full instructions for a physical exam to be done. The results of the exam were given to him and he returned with a profile of my son, including details that I had never mentioned, including the rocking, flapping, and the severe screaming when his head was touched, and the final verdict was “autism.” The case almost exactly described what Leo Kanner had described, according to my friend. The light went on!

It made so much sense that I was happy to finally know the truth! I called a meeting at the school and went to tell them the great news, only to begin another journey I did not comprehend: the legal and business workings of the school system (which even led them to call the social system to evaluate if I was a danger to my children). A similar story made headlines shortly after my challenge, and was discussed among other adults on the spectrum. A mother had lost her child because the diagnosis of autism had not been understood. That is another story for another time as well; for now let me explain how it helped us as a family.

I am not exactly sure why doctors have a hard time giving the diagnosis of autism. I may never really know, but I did meet some doctors who believed that autistic people could not talk. If a doctor believes that all people with autism cannot talk, they will ask if the child talks, or if they hear the child talk while in the office they dismiss the possibility of autism. If they understand it is a problem with communication instead of verbal talking alone they may look deeper.

I understood that the term autism and Asperger’s were often used to describe the same thing. I began to realize that there could be many other terms used to describe the spectrum of autism including the term PDD-NOS. I knew one mother that had a child with the diagnosis of “Asperger’s,” so I told her that my son was diagnosed with “Autism.” She immediately stated “well, you have it a lot worse than us then, because we only have Asperger’s.” Every different professional we went to there gave it a different name, but none of them explained a reason for the different diagnosis. I finally found the one professional in our area that gave me the statistical data on a report done by Harvard and Yale that the consistency of accurate diagnosis between professionals was less than 35%, and because of that he referred to it as “Autism Spectrum,” plain and simple. The doctor from the UK had told me that it is not appropriate to label them specifically until they are adults when the functional level of competency in basic life skills could be determined. Instead, we need to work on helping them improve their skills now. We began working with this doctor only.

I also understood that it was a neurological difference that they had, even if there was no medical evidence to support the fact yet. I knew every behavior had a logical reason to it. While the school attempted to gather evidence and data to prove my child was an “emotionally disturbed behavior problem” that needed more discipline, I set out to gather data to prove he was not. I took classes on business, health, education, and communication, in ways that were not mainstream. I worked with my son, walked with him to observe his issues, began showing up at school without notice to see what was going on and every time they called me in with another complaint I was armed with the knowledge that he was in fact on the autism spectrum, and was not “choosing” to be defiant. It took the entire year, but in the end the system changed, and Cody (and our family) is now considered a pioneer by some of those that worked directly with him, as well as by the people responsible for making changes in the system. I would like to share some of the stories as examples.

First it started at home. I had to slow down and watch him to see what was going on. He still has not figured out one of my favorite stories. I am beginning to understand the humor aspect of autism stories that at one time I did not like too much. If this one is not funny I apologize; I thought it was.

One day we were running late for an appointment. Running late put pressure on my children and I knew that long ago and had learned to compensate by always giving more time than we needed, but this time I was behind. Slipping back into the mode I was in before, I demanded that he hurry up! “Throw on your shoes and socks now, we got to go!” I demanded as I ran up the stairs to get ready. I came back down several minutes later, which was more than enough time for him to have accomplished the task, so when I saw him laughing and playing with his sock I almost screamed. Instead, I covered my mouth and stopped to watch him. This time I saw the open window of opportunity and looked inside. Between his giggles he finally noticed that I was standing there, and in all seriousness he looked at his feet and then at me and stated: “Mom, you are silly.” I was too angry and stressed to reply so I just stood there and that gave him the time to tell me why. “Mom, you cannot throw socks on!” and giggled even more. I asked him to pick up his shoes and socks to put on in the car. (another issue since he hated walking barefoot but he was still laughing about my incompetence and was able to comply). Once we were on the road and I was calmer, I asked him what he thought I meant. He really thought there might have been a “teleporter” or some device or a special way to actually “throw” your socks on. He realized after many attempts that I must in fact be the silly one, as he spent all that time and many different ways to try it with no success. I realized then that after the diagnosis, I was able to look at his actions in a way that was different from how I had perceived them before.

One of the next things that I realized was the fact that people on the spectrum can “forget” things that seem unforgettable. For instance, they would forget who their own parents were if away from them. This explains now why the fears about me leaving never really went away, and became worse after traumatic events (like the death). Cody had been treated for asthma because of breathing problems and often had upset stomachs. Watching him closely, I noticed he never blew his nose. I had taught him how but I had to teach him again every day for months. Now I do not have to do this as much, but sometimes I do still have to remind him to blow his nose. If I do not, he regresses back to what he did when he was younger, sniffle it back up, and then he gets worse infections and sick to his stomach, or it is all over his shirt as he uses that to wipe it off. The nausea, throwing up, and dizziness were being attributed to his “emotional issues that I was not addressing” and he needed counseling according to the school. Learning to blow his nose began to alleviate some of the problems.

Food was the next one. I had heard there were several diets that parents had claimed cured their child. We looked into some of them and even did one for a short time. The reality was that they were too “restrictive,” a term I learned in the legal school system. The diets would have to be maintained constantly and any little “cheating” would cause months of setback. I could not see how that would really help in his case, so we approached one at a time. Soon we found several items that, if he ate too much of or any at all, made him feel sick the next day. I helped him to connect the dots so he would understand why should choose not to eat the food. I even allowed him to eat it in excess, if he really thought he wanted it. He soon began to learn what not to eat, and to eat other things in moderation.