My Diagnosis of Autism

I received my diagnosis of autism when I was 6, when we were not even looking for one.

My sister had been sick for a while so my mother took her in to see the pediatrician. While we were in the examination room, the doctor suggested that I be evaluated by the developmental clinic down in Columbia, Missouri. Apparently he noticed that I wasn't all that attentive and that I flapped my hands a lot. Before we left the office that day, we had the name of the developmental specialist and an appointment with her set for a few months down the road.

That was the second time a medical professional had suggested that I be screened. The first time was when we were living in Bremerton Washington. I was almost three and was still not talking very much at all. Also, it had taken almost two years for me to learn to walk. At that time, they performed the Denver Developmental assessment on me, which merely identified a gross motor and expressive speech delay. My mother was told not to worry, that I would "catch up" and that no intervention was necessary.

The day finally came for my appointment in Columbia. It was to be the first of many, since I had to see so many different specialists.

Dr. Stroud, the developmental specialist would collaborate with the other doctors to come up with a diagnosis. Her first impression of me was that I was "precocious for [his] age in the areas of cognitive development and [had] quite impressive reading skills." She also cited delayed gross motor development, decreased strength and tone, speech concerns, and macrocephaly. I was given a script for speech and physical therapy evaluations and treatment in order to begin immediately.

The next doctor I saw was the clinical psychologist. My mother did not like her at all. She was snooty and controlling. She performed an educational assessment as well as a screen for Pervasive Developmental Disorder while my mother filled out a hundred questionnaires that were all worded slightly differently but that collected essentially the same information. She was the first one to recommend a diagnosis of autism.

My favorite specialist was Dr. Wright, the physical medicine and rehabilitation physician. He had lots of skeletons and muscle models in his office. I think I really impressed him with my knowledge of bones names. His conclusion was that there was definitely something different about me, but that whatever it was maybe didn't have a name yet.

Dr. Miles was my geneticist. She was a very nice lady. My screen ruled out Fragile X and Williams Syndrome, as well as some other genetic syndromes for which they routinely test. Dr. Miles did not give me a diagnosis of autism. She told us that her medical students would be very surprised to hear her diagnosis, because she did not really believe in it: mild cerebral palsy. This was interesting because she was the one running the autism clinic at the developmental center.

By this time, I had already had my MRI. Talk about a traumatic experience! They had told my mom to sleep-deprive me, which was not a problem because that was the way I always was. Still, she got me up very early that morning after putting me to bed later than usual the night before. However, the anesthesiologist must not have believed her, because when I did not go to sleep right at first, he gave me more medication. He told my mom that I would likely wake up right when I came out of the machine. I didn't. I kept sleeping and sleeping. Finally, after several hours, they woke me up. I was still very nauseous, but we had to get back to Kirksville for my sister's dance recital. So they packed me up in the car with a throw-up pail, along with a blanket and teddy bear that had been donated by an auxiliary organization. I think they must have felt badly that I had such a tough time.

The neurologist was next. He was very full of himself. He barely spent five minutes with me before telling my parents they were in denial and shoving an article about autism (that he had written) at them and leaving. They were not impressed.

As I said earlier, it was Dr. Stroud's job to assimilate all of the reports and come up with a diagnosis. She had already called to tell us that the MRI showed normal myelinization. Since there didn't seem to be a consensus, she based her clinical impression on a majority: Asperger's and/or High Functioning Autism.

At first, my mother did not want to accept the diagnosis of autism. She felt that because there had not been a consensus, there was still a chance that I was not autistic. Even the neurologist's resident expressed her belief that I was just a "variation on the norm." Also, my osteopath, whom I was seeing for cranial-sacral adjustments, did not agree with the diagnosis of autism. Instead, she said that I had probably suffered a minor stroke either in utero or at birth. She was a firm advocate for the Institutes for the Achievement of Human Potential , which contends that all of these labels were merely different expressions of one thing--a brain injury. Anyone who has read What to Do About Your Brain-Injured Child already knows this.

Still, having a diagnosis was helpful to my mom. Now she had a direction to go for information. It wasn't like she wasn't already doing everything she could for me and my development. Her background in music therapy helped, too. But with the diagnosis of autism, she was better equipped to connect with other parents who were experiencing the same kinds of things she was. She could find out what they were doing for treatment, too. Ultimately, it was those other parents who ended being the most helpful to her--more so than any "specialist" anyway.

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