New and very confused

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Hi everybody. I have had a couple of troubling experiences and wanted some comments and answers. I am going to apologize up front since this is likely to be a very long post.

My first knowledge of Autism came by way of the Babysitters club books I read back when I was 9. It portrays a little girl who is severely handicapped in one of the books. I was interested in the condition so I did what research I could in the era before the internet and learned very little, but I did pay attention anytime that Autism came up in the news or elsewhere.

When I took abnormal psych my teacher pointed out that we would all be able to see our traits as part of the disorders we would study. She gave us a measuring stick to understand the line between a quirky characteristic and an actual disorder: does it impair the individuals ability to go about an ordinary life in a productive way. Instead of finishing my psych degree I married, had a cute boy, and became a stay at home Mom.

About the time my son was born a study had just been completed on the rate of Autism in silicone valley, the vaccination discussion was heating up, and Asperger syndrome had just been included with Autism creating the Autism Spectrum Disorders. I decided to do some research and, with the aid of the internet, was able to learn much more about Autism. I also found some information, possibly a check list, for evaluating infants and discovered that I need not worry about my son.

Okay, that is my background. Now a bit about my son: At 15months my son had 5 shots and, I think, 7 vaccines. He reacted badly to this episode both physiologically and psychologically. I still wish I had just said "no way" when they said he needed all of those immunizations, but we had insurance temporarily and so it seemed like the thing to do at the time. (I later learned that the doctor at the clinic we had gone to had lots of complaints.)

So physiologically he had a raging high fever for the next 4 days. I gave him lots of Tylenol and did my best for him. On the fifth day the fever finally broke and his remaining symptoms began to abate, but he was also a different child. This child didn't talk or attempt to talk, though before he had been saying some words. He also didn't trust me or want to have anything to do with me. I understood this because they had me hold him while they gave the shots. I would have been mad at me too.

So I waited patently. I would sit on the floor in his room while he played nearby and eventually he started to thaw toward me. By the time he was 18 months I had changed my entire parenting style to be more patient, more compassionate, and express love as freely and often as I could. By the time he was 30 months he had learned to trust me again and we had rebuilt our relationship.

Not long after the shots we had an incident where he wanted something and he cried and threw a temper tantrum until I finally figured out what it was he wanted. I told him in a conversational tone that this wasn't going to work, we needed to be able to communicate. Then I took his hand in one of mine and proceeded to follow him around for an hour or two. He thought this was a very entertaining game. However, later that night when he wanted something he came and grabbed my hand and took me to the spot and looked back and forth between me and the item. The message was clear and his nonverbal communication took off rapidly.

At about 20 months I became concerned about the lack of talking. The nonverbal communication was working well for us, but I knew that he would soon have ideas and wants that couldn't be conveyed through concrete gestures. I debated teaching him sign language, but I would have to learn from scratch too. So I thought it was worth the attempt to see if he could learn to use verbal language. I bought the BabyBumblebee videos, started pointing to things and speaking clearly, and began to require him to use the name of the object in conjunction with his nonverbal cues. He caught on really quick and I started tracking his language development. What surprised me was that he has acquired language in a textbook fashion about 15 months behind the average ages.

My son has always enjoyed spending time with other children. Since he is an only child this has usually taken place at playgroups and my friends' houses. I always made sure we attended at least one playgroup a week, but generally we would go someplace where he could socialize with other children every weekday. When he was 4 we visited a preschool that he really wanted to attend. I had already been trying to potty train him but hadn't gotten anywhere. Finally it was the day he would need to register for the preschool and I had to tell them no because he wasn't potty trained. I was so frustrated at that point. I expressed my frustration to my son the way I would have another parent, without using simplified language. I explained that to go to school he had to be potty trained and it was his responsibility, I couldn't know when he needed to go only he did, etc. From that moment on he was potty trained.

However, we had missed the deadline for the preschool. So some of my friends who also had 4yo children and I got together and we put together a preschool for our children. My son really enjoyed this experience and looked forward to it. One day when we were at preschool he threw a terrible temper tantrum. I picked him up, put him in the car, and left. when he was quiet enough to hear me I told him that his behavior was unacceptable and we couldn't go back to preschool if he ever did that again. He has never again thrown that type of temper tantrum, even at home.

So that is the back story, now for the odd experiences.

After preschool I had planned to homeschool my son, but he had other ideas and requested the opportunity to go to school. So I found a school that I felt was the best available, arranged for the district transfer, and enrolled him. At first he loved it, and I saw so much growth I was very happy. Then just after Thanksgiving he was sick and I was surprised that there was no interest in his returning to school as soon as possible. The one day I tried to have him go he gave his little fake cough (okay, it sounds real) and they called me and had me come pick him up. Somewhere in this time frame I also received his progress report. He was doing well academically, but the gym teacher has some concerns. Without ever using the word Autism she implied that he was Autistic. This was a teacher that saw my son for 20min a week on weeks when there wasn't something else going on. When she gave this assessment she had around 3 hours total time with my child. His classroom teacher had never mentioned anything amiss, but when I went over for that conference she indicated that she had seen suspicious behavior. I went home and reread the DSM-IV-TR diagnosis criterion for Autism. I didn't feel it fit my child.

In January I went to visit the school a couple of times. I was very surprised to find that my child was exhibiting Autistic-like behaviors at school. They wanted to give him socialization training. Then the teacher said that she would make sure he got a teacher who knew how to deal with his problems the next year. I mentioned that the district was closed to transfers beyond kindergarten. She said that she was sure there wouldn't be a problem. I didn't like where this sounded like it was headed. I went and looked up the lists of Autistic symptoms available to the lay person and discovered almost every gifted kid would be considered at risk for Autism. That still doesn't sound like it makes sense.

Things at school deteriorated fast and my son started exhibiting those odd behaviors at home that he had previously only exhibited at school. I discovered through my observations of his classroom that he had learned to completely manipulate the teacher into doing anything he wanted. She was so sure he couldn't control himself, but I am very aware that is not true. My husband and I visited the only independent private school in our area. We were very impressed and, even though it will be a struggle financially, we committed to sending him there. My son had his first visit at the private school and immediately fit right in. But I also saw that the teachers are not going to allow him to manipulate them. Within a month of starting the private school all of the odd Autistic-like behaviors disappear. I am left flabbergasted.

So, can a school cause autism? I know they get more money for Autistic children and I know this particular district was facing some very large cuts for next year. But this concerns me greatly. (I am of the opinion that my child is not Autistic and never was.)

Does research into Autism account for these sorts of false positives? If I had been a less informed parent and just trusted the school to know what was best my son would now have an autistic diagnosis whether it fit him or not.

The teacher seemed to think that it was somehow bad to be Autistic but good to be diagnosed with Aspergers. Are they really two different disorders? How do you make sense of the relationship between Autism and Aspergers?

After reading through one of the diagnostic tools for autism (the 27 question one) I was left wondering if there is anybody who could not be diagnosed as Autistic using the broadest interpretation. According to that measure I am autistic, even though I am not. I also read an article about how one district is "diagnosing" children as autistic because they are poor (economically) and the district feels that they need the extra money. So has the term "autism" effectively become a dumping ground for anyone different, ahead, poor, or behind? Effectively the "non-standard" label of the standard classroom?

What about the link between IQ and Autism? I know gifted children can also be Autistic, but are the two terms as synonymous as they seem to be becoming? If the measuring tool is biased in the direction of characteristics that are common to all gifted, or even most gifted children, then the measure itself would show a bias toward diagnosing gifted children as Autistic irregardless of whether they were or not. Has anyone ever looked at this bias and attempted to measure its effect and the resulting effect on the research?

Finally, for those of you who are diagnosed, what does the label "Autism" mean to you? Is it useful? Helpful? A hindrance? Useless? Does it change your perception of yourself, or the world? Does it change the perception of others? In a positive way?

Thanks for reading all of that. I look forward to learning more from all of you.

Thank you so much for sharing your insights.

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