The very first time a health care professional uttered the word Autism to us, Amanda was just 3 years old. It was September, 1998, and we had just moved from Lorain to Louisville, Ky. I had taken Jake and Amanda into their new pediatrician. Jake of course was fine, happy, and healthy. This new doctor was very interested in Amanda's history, reviewed all her notes, and stated that she wanted to test her further. She was very compassionate and resourceful and set us up for an evaluation.
We met with many different therapists. We had physical therapists, occupational therapists, speech therapists, behavioral therapists, just to name a few. We met as a group, and throughout the course of several weeks, we met one on one. PT, OT, and Speech Therapy was recommended, and denied by the insurance. I was given information about possible education avenues for her. In March of 1999, I decided there was nothing at all in Louisville for me, so I moved back home. One good thing came out of my short time in Kentucky tho, I was armed with tons of information about Autism and the opportunities for Amanda.
I quickly made an appointment with Amanda's old pediatrician. He looked everything over, and agreed. Amanda was Autistic. I still didn't want to believe this was happening! But the signs were evident. She was not talking, she didn't make eye contact, she exhibited several "strange" behaviors and obsessions. Her fine and gross motor skills, although highly functional were delayed and unsteady. I'll talk more about behaviors in a later post. Her doctor recommended taking Amanda into the head Neurologist for Children at Rainbow Babies and Children's hospital. This man, who I will not name on here was supposed to be the Autism guru of Cleveland, and Amanda's doc pulled some strings and called in a personal favor in order to get Amanda in to see him right away. I guess there was a 6 months waiting list for this guy.
So off we go on our first of many trips to The Cleveland Clinic. I will say this man is great with children. He gets down to their level, and can communicate with them. His problem is communicating with the parents. He noticed her gait, her awkward movements, and obsessions with things in his office. Her fear of loud noises, and other little things. He asked if she had ever been seen by an eye doctor. She had been, but the doc I took her to was ill equipped to handle children like her and said he couldn't get a prescription on her, and as far as he could tell, her eyesight was fine. Well, we were sent off to see a Rainbow doc. I was amazed at what this eye doctor could do. All the neat gadgets and the way he examined her. What he told me about made me fall off my chair. This poor little girl was so nearsighted, she's probably never even seen what I looked like clearly. Her prescription was -10.50 in the left eye, and -12.50 in the right eye. My prescription is a -8.50, and I know I can't see. So I asked my Mom to take her right out to Lenscrafters and an hour later she had glasses. My mom took her for me so I could get back to work, and she said that when Amanda put them on, she actually said "Wow".
Yes, she said "Wow". I need to clarify. when I say Amanda was not talking, I should say that she was not communicating. She could say words, but she was exhibiting echolalia. That means that she will repeat phrases she hears, but not partake in usual conversation. The only words we really ever heard her say, was things she would repeat from her favorite cartoon, which at the time was Rugrats.
So now she could see. Her gait was much better, and her movements were not as awkward. We went for our follow up appointment with the grand poo-bah of neurologists, and he tell me that she is not Autistic. WHAT??? Just because she moves better because she can see, she's NOT autistic? He diagnosed her with speech delay, anxiety, developmental delay, and a few other behavioral issues. He sent us off to see a Behavioral Therapist. To be honest, after a couple sessions with her, I thought it was a bunch of BS and stopped going. In my heart, I knew this was not the right avenue for Amanda. If you put all the diagnoses together that he had given her....THAT'S AUTISM! Her pediatrician agreed, and the new neurologist I took her to agreed, and the school psychologist I took her to for her Multi-Factored Evaluation Agreed.
We had MRIs, CAT scans, evaluation after evaluation, therapy sessions, and genetic testing. All scans and testing came back normal. Her chromosomes were fine, and there is no blood test. Autism is diagnosed by speech delays, lack of social skills, cognitive function, motor skills, obsessions, behaviors, sensory issues, so many things are grouped under the Autism umbrella. For this one doctor to discount so many other things is amazing.
So we have the definitive diagnosis, where do we go from here? Her pediatrician led me on the pathway of Early Intervention, and so many life lessons for all of us to learn.
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