I'm going to start this post with some events that happened a few years ago. For close friends and family, you know this story already, but to the new guys, I had to back up to get to the heart of the post. So bear with me if you've heard this before.
When Emma was almost 4, I took her to our primary care physician because I thought she may have had a speech delay. I was having better conversations with Aubrie, who was almost 2 at the time, than I was with Emma. Some of her words were very hard to understand, plus she had a small lisp with her S's, and sometimes she just spoke in gibberish. Our PCM gave us a referral to a speech pathologist. We went in for some testing with the speech pathologist, who asked me if I'd ever had Emma tested for autism. I knew very little about autism at the time, so I told her no. She told me she suspected that Emma may be what they call a high functioning autistic child. If you don't know about autism, I'll try to explain it to the best of my knowledge. It is a social disorder, that has some symptoms that are neurological. It is a spectrum disorder, meaning it can range from incredibly severe to very mild. The kids who are very mild are referred to as high functioning. They may be socially awkward, and can have some learning disabilities, but they can be taught to live a normal, happy life on their own. The more severe cases require round the clock care and supervision. The speech pathologist referred us to a child psychiatrist.
The first visit we had with him, which was just over an hour long, he definitively diagnosed her as autistic, but high functioning. He immediately put in for her to be tested by the DOE in Hawaii, so that she could be in the special education preschool. He also set up appointments with us to do a child study program. In the child study program, they get together a group of children that are to be observed by a team of doctors. They bring in a child psychiatrist, and a child psychologist, a speech pathologist, a pediatrician and a few others that I can't remember off the top of my head. They basically see how the kids interact with each other, and how they respond to various taskings and interactions with the doctors. It's a series of 3, one hour long sessions. We made it to 2, but missed the 3rd one because Emma was sick. In between the first session, we had our second appointment with the psychiatrist, I had mentioned to him some aggressive behavior I'd noticed in Emma. I wasn't sure if the behavior was autism related, or just her being a normal 4 year old, who was truly the middle child, just expressing her frustration. He told me that it was definitely the autism, and he wanted to medicate her. I sort of freaked out when he took her to have an EEG done, so that he could prescribe the medication. I went home and did some research on the medication. It is used in the treatment of the manic phases of bipolar disorder, the treatment of schizophrenia, and to treat severe behavior problems in autistic children. I went back to him and told him I was NOT giving her this medication. He insisted, and I told him that I wasn't convinced she was even autistic, but even if she was, I was not putting my almost 4 year old on a drug like that unless absolutely necessary and we were NOT at that point yet. He agreed to reviewing the matter later.
The first round of school testing began, and they did several things. I can't remember everything they did, but the speech pathologist from the school district pulled me aside after her testing and asked me what exactly we were testing Emma for. I told her she'd been diagnosed autistic, and the doctor wanted her in preschool. The speech pathologist looked at me like I had 4 heads! She told me that she was very surprised that they were testing Emma for autism, because she showed no signs of it in her session. In my gut, I knew this diagnosis was a quick one. Autism is a spectrum disorder.......how in the WORLD do you come to that conclusion after ONE visit? After all the testing in the school district was finished, the testers sat down with me and gave me their decision - they were not recommending Emma for special ed preschool. And I was advised (off the record) to get a second opinion on her autism diagnosis.
The second doctor we saw was another primary care physician. He assured me that just from what he saw in his office that he wouldn't even recommend her for another consult. From the way she was behaving and interacting with him in his office, he would say he was reasonably sure that she was not autistic, but that she did have some learning delays. At this point we were getting ready to PCS to Washington, so I put everything on hold until we moved here.
Since we live off post here, we were allowed to be seen off post. I made an appointment at our pediatric clinic, and met with an RN whose specialty is child behavior. I brought Emma in, and again, she could see no neurological or other reason why Emma would be considered autistic. She said she would put in a recommendation to a child psychiatrist if I wished, but she felt that just from that one visit that she was too far along in so many areas (socially, neurologically, behaviorally) to be considered autistic. When I came home that day, I sat down with Chip and we agreed that we would just wait until Emma started school. If there really was an issue, that's the place it would rear it's head.
When she started kindergarten back in September, I waited. I was waiting for a call from the teacher, SOMETHING to indicate we might have issues. But no call came. On Wednesday, we had our first parent/teacher conference. She showed me all of Emma's work, showed me her progress, and asked if I had any questions. So I asked, "Do you see anything that makes you think Emma could be autistic?" Her response? Well after she stopped laughing, she asked if I was serious, and I said yes. I briefly explained what we had been told and she shook her head. No way. In her 23 years of teaching kindergarten, she had some experience in this area, and she was just shocked that Emma was ever considered autistic. She told me she would call in the counselor during class one day, and ask her to observe Emma, but she would only do that if I really wanted it because she saw no indications at all that Emma was autistic.
So then, what was it? I think I can pinpoint a few things that brought everything on. First, Chip deployed that year. I did NOT handle that deployment well. Which I'm sure my kids picked up on. Second, I was pregnant with another baby. When Camden was born, Emma became THE middle child. She has two older siblings and two younger siblings. Third, she was almost 4. Not quite a big kid, but not a toddler anymore either. I think just this combination is hard enough for an adult to deal with, so imagine having to do it as a child. She DID have some learning delays. Which is probably what caused a lot of her frustration. Imagine being the middle child and not being able to communicate effectively. Emma does have some quirks, she can be a little odd and very in your face. But that is more personality than autism.
I think back on when the first doctor wanted to medicate her. I am so glad that I stuck to my guns and refused. I'm not against medicating my children IF they need it. But I just felt that she didn't need it. More than that, I felt like the doctor was treating her based on what he'd done with every other child he'd worked with, and NOT treating her based on what was best for HER.
So for now, I'm fairly confident that she is not autistic. Her teacher is aware of this concern, so if anything comes up, she will inform me and I guess we'll go from there. This has been such a long an frustrating journey. Autism is hard to diagnose, but to be wrongly diagnosed I think is even worse. I want what is best for her, and I guess as a parent you just always want clear answers and treatment, and that is not always the case.