Autism & The Road To Truth

By Melissa K. Knauer

What We Learned: In the whole experience of witnessing disturbing symptoms when Nick was a an infant and toddler and the hassle of going through the chain of doctors, some important lessons we learned were to 1) Trust your instincts, because a mother’s intuition is usually right and 2) Don’t give up, you will get to the point you need to give your child the help he or she needs if you just stick with it.

Some things happen that you expect. You know what to do with them. You know how to handle the situation. Some things happen that you don’t expect but you deal with the situation anyway. Some things in life creep up on you, growing in abundance little by little, not at all expected, and come as a huge blow.

I didn’t know this is how I felt about my son’s Autism Spectrum Disorder, or ASD, until half a year after he was diagnosed. Even then, my husband and I pretty much knew what he had; we were just waiting for the doctor’s diagnosis.

Many children are now born with autism spectrum disorders and every parent has a story to tell. Ours is one of many medical conundrums with the ins and outs we faced when trying to get a true diagnosis. After all, ASDs are still extremely puzzling disorders, even for doctors. We have since crossed this huge hurdle and are taking many steps to ensure the best life for Nicholas we can provide.

Our son, Nicholas is on the autism spectrum, otherwise known as the collection of Pervasive Developmental Disorders. These disorders include, Autism, Asperity Syndrome, Rhett’s Disorder, PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified or Atypical Autism, Childhood Disintegrative Disorder, and at certain times, Fragile X syndrome. Nicholas has PDD-NOS. He wasn’t an overly affectionate baby, in my opinion. I think others might disagree, but mothers always see things that others do not. I was concerned, even at this young age. I knew from the beginning there was something not typical with Nicholas.

One morning, as I was changing his diaper at age 3 weeks, his eyes rolled to the back of his head and his whole body shook for about 10 seconds. Then, everything went back to ‘normal’. This happened several times over the next month. After that, I never saw it again. Then, when Nicholas was about one and a half, I knew for sure something was not right. My husband and I would see behaviors like an unwillingness to give or receive affection, lining up toy cars and watching them roll around the floor for hours on end, losing his speech to anyone but his parents for a total of 7 months, convincing his day care provider that he did not speak, and the list goes on.

I don’t know what stopped me from going to the doctor at age one. Was I being lazy? Was I living in a fantasy world thinking things would eventually get to a state of normal? Would he grow out of all of this? I don’t know if these thoughts really ever fully came to my mind in a way that I could process them. There was a time though, when I knew I had to speak up, not to a doctor, but to myself. Like I said, I don’t think I was in denial, but, I hadn’t faced the big picture yet and I was most certainly not seeing it. I don’t know what led me to get to that point of no return, but I did.

I contacted the state’s early childhood therapy intervention program (First Steps) and asked if Nicholas could be evaluated for services. The state stops providing these early intervention therapies (occupational therapy, speech therapy, etc.) at age three. By the time I made the phone call and realized I needed to step up and get him the help he needed, he was three months away from turning three. By this time, Nicholas had been to the doctor for his odd, and also many times challenging behaviors. He had also been seen by a doctor because of my concern regarding the scary diaper changing episodes I was discussing previously. I knew I had to find out what caused his odd and challenging behaviors as well as his shaking during diaper changes. Nicholas ended up becoming a patient of the Developmental Pediatrics office of our local children’s hospital. One of his medical providers, the M.D., not the therapist, wanted everything checked out, to rule out certain diseases and disorders. This is sometimes the normal procedure before giving the diagnosis of an autism spectrum disorder. All avenues must be traveled to make sure nothing was missed or misdiagnosed.

One of the tests Nicholas underwent was a brain MRI, for which he was given general anesthetics. Remembering that day now, I cannot believe I had forgotten what that scene was like. I cannot believe I had forgotten the feeling of horror. The mind is a funny thing. I suppose we will all suppress feelings or experiences if they are painful enough. As the parents, my husband and I were told we were going to be able to be in the same room with all the doctors and nurses while they administered the anesthesia. We were able to pick the flavor of medicine that would be given to him via a mask held lightly to his face. We chose grape. I am not a doctor, nor am I a nurse. Therefore, I do not think I was prepared for what I would witness when Nicholas was given the drug. It was horrible to watch. Your child is squirming and screaming and then all of a sudden, you watch as all the life drains from his body. It was scary, sad, and nauseating. I should not have been there. What were the doctors thinking? Oh, I know, they thought I would feel better knowing my son went off to ‘sleep’ without any problems. I can tell you that I would have felt much better getting this report from the nurse or the doctor while I sat in the waiting area. I did not need to be there to see that, and, wish I had not. Thinking on that time now, I know I must have pushed that horrible memory back to the depths of my brain and only a parent who has gone through it, would know why. Nicholas received a clean bill of health as far as the MRI was concerned. No tumors, no abnormalities, a perfectly fine looking brain.

At this point in the game, I knew Nicholas had a disability of some sort. It was evident by the feedback we were getting from the therapists Nicholas was seeing from the state’s early child intervention program, from his therapist, from my own instincts, and research. However, I still did not know what it was, for sure.

Given the fact that the MRI looked fine, the doctor wanted to make sure Nicholas’s brain was healthy in a different way. She wanted Nicholas to undergo an EEG which would test Nicholas’s brain waves to tell us whether or not he had a seizure disorder. Seizures are somewhat common for children who have autism spectrum disorders and can be quite severe. Was that what was causing Nicholas to shake as an infant and why his eyes would roll to the back of his head? We would find out soon. This test was not quite as scary from a parent’s point of view as the MRI experience had been. With this test, the technician placed little electrodes with a type of glue all over Nicholas’s head. This test is usually done when children are ready for nap time because many children have seizures while they sleep. The timing of the test would provide an ideal opportunity to get an accurate reading. As I said, this test wasn’t nearly as frightening, and actually, it was quite amusing to watch. Colorful wires were coming off Nicholas’s head and were hooked to a monitor that read the brain waves. Somehow, we managed to get Nicholas settled down enough to allow him to eventually fall asleep. While Nicholas slept in this cold room in the children’s hospital, I had nothing to do but watch him, the machine, and my daughter. Unfortunately, I had to take my daughter to this appointment and had to keep a five year old quiet during the entire process.

When the test was over, I had to awaken a reluctant two-year-old from his peaceful slumber. Not only that, we had to take each electrode off, one by one. Nicholas handled this process, as well as the original placing of the electrodes, miraculously well. The technician was able to tell me right then and there that she did not note any seizures at this appointment. She did consult with the doctor at this point and the doctor told me there was a “period of slowness” noted in his brain waves during the test. Thinking about that now, I wonder still, what that means. No one, not even the doctor, could explain it. Due to this noted period of slowness, she recommended Nicholas receive a twenty-four hour EEG, to better determine whether Nicholas is indeed having seizures while he sleeps at night. She also said she didn’t think it was necessary; that she was fairly certain he did not have any seizure disorder because it would usually show up on the test he had just completed. My husband and I were not ready for another test yet. Maybe soon, but not now.

Now that these two tests were concluded, it was time for the doctor to tell us she felt it was necessary to continue seeing the therapist and see how that helps our situation. By this time, First Steps had run out and Nicholas was not receiving any therapy. This was not where we wanted to be, however, we had no diagnosis and didn’t know which direction to proceed in anyway. On my own accord, I decided to consult the autism center within the children’s hospital for further testing. I wasn’t one hundred percent sure that it was an autistic diagnosis we would find, but, I had to make sure, after all, no one had been able to tell us anything conclusive up to this point.

By the time we got Nicholas to the autism center, it had been about one year we had been trying to understand what was causing Nicholas to display the odd behaviors we were seeing. The first doctor we came in contact with at the center was the first step I like to think of as a line to the top. He was not the only doctor we would see in order to get Nicholas properly diagnosed. We had already seen four doctors up to this point. I could not believe we would need to see more than one more doctor. When I found out at the end of the first appointment, lasting more than two hours with Nicholas present, that we would need to see another doctor for further testing and observation, I was frustrated, to say the least. How much more time would we waste? There is something to be said for being careful, for not wanting to rush into something. As a parent, and with it being my child in question, I can completely respect and understand the need for further consultation between the physicians. However, we had already lost so much valuable time in reference to Nicholas’s treatment; I could not believe we were going to lose more. I did not understand what this was robbing Nicholas of, until later, when I understood the diagnosis more. The other complication with this scenario was that it was going to be another 4-5 month wait to see the second doctor. After that, this second doctor at the center would need to see Nicholas again, in another 4-5 months, and then, after that, another 2-3 months to go over the test results, the history of Nicholas’s chart up until this point, and a firm diagnosis given all the findings. You can do the math. We were up to roughly two years for Nicholas to get to the point where he could start receiving the proper therapies based on his true diagnosis.

Finally, after all this time, struggling, and frustration, Nicholas was diagnosed with PDD-NOS and ADHD (Attention Deficit Hyperactivity Disorder), a double whammy. You can imagine how hard it is for an autistic child to function in his or her everyday surroundings and then adding the inability to focus and settle down on top of their autism is really saddening. Sometimes I look at Nicholas and wonder what it must be like to be him. What does it feel like to go through the little everyday irritations and battles he must face? Some of them, not so little. You can read it in his face. You can see when he attempts to figure something out or tries getting through an event or a task can take all the energy he can bring. There are times when I wish I had someone to blame for this. I want to make them suffer as much as I know he suffers. However, at this point, there is no one to blame. No one knows why autism exists.

As you know, we now have a diagnosis. No matter how much time has been lost, we can only go forward, we cannot allow ourselves to constantly look backwards, otherwise it just might stop us in our tracks if we do.

What We Learned: In the whole experience of witnessing disturbing symptoms when Nick was a an infant and toddler and the hassle of going through the chain of doctors, some important lessons we learned were to 1) Trust your instincts, because a mother’s intuition is usually right and 2) Don’t give up, you will get to the point you need to give your child the help he or she needs if you just stick with it.

We feel like we’ve learned what to do with the diagnosis in a proactive sense. Nicholas’s future is our main focus when we think of his current educational situation, his health and wellness from simple doctor’s visits to fine tuning the approach to his special needs. We now have Nicholas in Speech and Occupational therapies at Riley Hospital for Children in Indianapolis as well as a social group that allows him to interact with other peers with similar capabilities and social needs. The social group allows the children to learn from each other utilizing specific social cues sometimes given by the children themselves and sometimes therapist directed. Nicholas has already learned how to take gentle, peer supported criticism from his group friends and have come to respect them very much. This has also given him a sense of acceptance and confidence. We are also trying to get Nicholas involved in a summer program specially designed for children with ASDs. He is also going to participate in a mainstream kindergarten class in 2010/2011 to benefit from neurotypical (those without an autism spectrum disorder) children his own age and that he can socially learn appropriate responses and interactions from.

Day by day we are learning how to handle his challenging behaviors. We have read (and are continuing to read) many books, articles and newsletters on the subject of autism spectrum disorders. A parent friend of mine, who also has a child on the spectrum, told me she read everything she could get her hands on during the first eight months following her child’s diagnosis. Then, she came to realize it was time to put all that knowledge into action. This is where my husband and I find ourselves at this point. All the books and articles have provided so much useful information as well as advice from therapists. We are utilizing it to the best of our abilities. We are not perfect, as no parent or individual can be, but, every day we get up, and keep trying for him. Nick calling me “Supermommy” today is all I need to do it all over again.

Author Biography: Melissa K. Knauer lives in central Indiana with her husband, two children, and dog Bob, cat Katie and fish Bubbles. Staying at home and taking care of the family is her full time job. Her regular paychecks come in the form of hugs and kisses.

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