Autism, Viewpoint on the Brain Disorder

2 - Ralf
My son Ralf was delayed in being able to hold his
head up, learning to roll over, sit, crawl, stand, and
walk. At twenty months of age, he was diagnosed as
having a mild form of hypotonic cerebral palsy. He
attended cerebral palsy clinic until the age of three
when it became clear he was outgrowing his motor
difficulties.

Meanwhile, Ralf's language development was
delayed, first by difficulties with articulation then by
echolalia. Ralf was almost six years old when he
suddenly stopped reversing the pronouns "I" and
"you" and learned to speak naturally. He had
learned to read by the age of two years and two
months. Following the advice of the speech therapist
at the cerebral palsy clinic, I used lotto cards to help
Ralf learn to recognize and pronounce words. Ralf
seemed to find the printed words on the backs of the
lotto cards easier to recognize than the pictures on
the front. From the words on the lotto cards, he
began searching for familiar words in his storybooks.
He was at first far more interested in the words than
pictures in his books.

Ralf might well be described as having Asperger
syndrome or the "broader autism phenotype" (BAP).
I resist this because diagnostic labels have been so
stigmatizing for him. Ralf is one of the most cheerful,
upbeat people anyone could ever meet. He has
problems, but many of these are from the stigma and
discrimination he has endured. He recently objected
to the notation PDD-NOS in his medical record.
"What's that supposed to mean?" he asked.
Asperger syndrome was then explained to him, which
he prefers. Now he happily deflects any criticism with
the comment, "Give me a break – I have aspie-
berger syndrome!"

How often I wish we could go back in time and
provide him with more of the normal experiences of
childhood. Although when I suggested to Ralf a few
months ago that his childhood had been somewhat
unusual and different from that of most children, he
responded, "But I had a very happy childhood."
What a gift for me! He has always been a gift; I could
not have asked for a more cheerful, gentle, precious
child. Unfortunately his childhood was not a happy
time for me. Nor can I easily adopt his joyful
attitude. The words of the neurologist who
diagnosed him as having a "mild" cerebral palsy still
echo in my head, "He will never be quite the person
he would have been."