I can't let Autism Awareness month zoom by without writing about our experiences with Autism. Clara-Bear had just turned 3 when she was diagnosed. Cognitively, she was functioning at a 15 month old level, and developmentally around 18 months (give or take).

Clara-Bear's Autism diagnosis was hard for me to take. Not that I hadn't always felt that she had Autistic "tendencies" and knew that the day would come when it would be made formal. I knew that children with Down Syndrome can have sensory processing issues similar to Autistic children and had watched her closely since infancy. The diagnosis itself hurt, but it was not a shocker. It was the circumstances surrounding her diagnosis that were so painful for my mother's heart to accept.

I'm not going to go into a lot of detail because I'm still in the process of adding Clara-Bear's story to able2able. Let's just say that when Clara-Bear was 2 and two months into her first winter without being housebound on monthly Synagis injections, our feelings that we were over the worst of her medical concerns were really, really off.

After 30 days in the hospital that included a week chemically paralyzed on a ventilator, possible sedative withdrawal, an oxygen tent, an immune reaction, then six weeks of home IV antibiotics during which we could taste the medications in her system when we kissed her, my sweet Baby Bear was on sensory overload from the inside out. And very, very traumatized.

Being medically fragile since birth, Clara-Bear was used to a lifestyle that included frequent medical appointments. She was usually pretty easy going, but she had been growing a little more apprehensive as the years went by and she began to anticipate what happens at appointments. Not just the "owies," but also, I think, being talked over. This last medical trauma put her over the edge.

If you came to our house in a lab coat you got no eye contact, head down, overly absorbed in musical toys (her little obsession). No lab coat or clipboard, and she would come to greet you, and even try to get you to play.

Office visits weren't just total withdrawal, she was starting to cry in waiting rooms. Unfortunately, not only did she have additional medical traumas in the months before the psychologist appointment, she also had a dose of Benadryl before we left the house because she drank something she's allergic to at breakfast. When music loving Clara-Bear treats a person singing her favorite song like they're speaking Mandarin Chinese, you know it's going to be a very bad visit.

While I don't disagree with the Psychologist's diagnosis, as a parent I was very upset that not only did she dismiss the role of trauma (and Benadryl) on Clara-Bear's mistrustful and withdrawn behavior, she actually argued with me! "She doesn't look stressed. She doesn't look tired."

Her attitude was that the outgoing nature of Down Syndrome should override the need for withdrawal as a defense mechanism. Excuse me, my daughter has Down Syndrome. But she's also a child with feelings and fears. Most importantly, SHE'S NOT STUPID!

Did this Psychologist really think that individuals with Down Syndrome are not capable of learning to avoid what hurts or scares them? This attitude did not reflect respect for or knowledge of the nature of my daughter's disability. This probably had me the angriest. It felt like a trust was betrayed.

She also took no notice of how Clara's fine motor delays affected the testing. I thought this was important because at that age, Clara-Bear would often refuse to do things that she understood cognitively but could not do physically. That's pretty common amongst therapy babies, it's not a sign of Autism. In fact, after spending 3 hours in a room with Clara-Bear playing freely as well as being tested, the Psychologist didn't even know that Clara-Bear could not walk.

As soon as the Psychologist started treating me like a parent making excuses, I knew the diagnosis was made. I suspect it was made before we even arrived. The deal was sealed when Clara-Bear noticed her own reflection in the mirror and started playing with it at the end of our 3 hour appointment - after the toys were put away and she had nothing to play with. The Psychologist pointed to her and said "See, children with Autism prefer mirrors over people and toys."

We were never asked for observations from the professionals that had known Clara-Bear for years. I asked her teacher to write a letter, but did not know enough to ask her other therapists to send in their observations. I later learned that this should have been a part of the diagnosis. Since strange situations and new people can cause even Typically Developing 3 year olds to behave in ways that surprise their parents, one has to wonder why this Psychologist felt that she could diagnose Autism without input from anybody else.

I was asked to complete my own observation checklist. It asked for frequency of behaviors, but it also went back a year. Eight months prior, Clara-Bear was in the hospital banging her head, screaming, and trying to pull out her hair. I was honest when I filled it out, but at the same time I was feeling sick. This had been my daughter, but it was not all of her and not all the time. I had never seen such extremes from her before or since, though she emerged from the hospital a changed girl.

As we were standing in the hallway, the Psychologist showed me the results of the form and told me that it proved that I already knew Clara-Bear was Autistic. Now that the clipboard was gone (and the Benadryl was probably worn off), Clara-Bear tried to get the Psychologist to sing a song and do hand play. The appointment ended with a surprised look on the Psychologist's face and the remark, "sometimes parents come back a year later and it's like a miracle has happened. It's like the Autism is cured"

The follow-up to Clara-Bear's Autism diagnosis will be posted next week. I can't find any picture files from 2008 (eek!), but will add pictures once DH gets home and that mystery is solved.

Click here to start at the beginning of my incredible daughter's journey and here to read part two of the two part post.

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