The SpecialMoms Parenting Magazine 4th Issue | Page 26

In the Cracks of
the Spectrum:
Diagnosis
Smith-Magenis
Syndrome

W

hen a psychiatrist diagnosed Robyn
Fell’s toddler on the Autism spectrum, she was in shock. “It’s not
that I was in denial,” she explained,
“my son, Zan, did have many unusual behaviors.”
A personality that included an insatiable obsession
with certain toys, an inability to accept changes
in routines and a gift for remembering names and
events long after they occurred. And there were
other autistic-like behaviors such as repetitively
flipping the pages of a book or setting his toys up
in a line.
“But I have known individuals with autism,”
Robyn continued, “and Zan seemed to be almost
opposite in other ways.” The most noticeable difference was Zan’s eagerness to please people, especially adults and more specifically, his mom and
teacher. “His early school years were the hardest.
Although we used picture schedules and social stories, most educators could not manage his need for
undivided attention, not to mention his constant
napping throughout the school day.” In fact, Zan
changed schools five times in the first seven years
of his education.
Robyn had other concerns as well. As a baby, Zan
had feeding issues and choked a lot. He had low
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muscle tone and was delayed in reaching milestones
such as sitting up, crawling and walking. When he
finally began speaking at age five, he was difficult
to understand. “He sounded like a little old man,”
Robyn joked, “people were always asking me if he
had a cold.” But, by far, the most difficult struggle
was Zan’s inability to sleep all night. “It was awful.
It was like having a newborn, forever.” Robyn put
a toddler bed next to hers. “I was so afraid I would
not hear him get up and that he would hurt himself while I was asleep.”
More than one pediatrician brushed Robyn’s concerns off as an over protective mother. But Robyn
did find solace with other autistic families and
joined a newly formed support group in her town.
“One month I could not attend, so my mom went
to the meeting. She showed up at my door that
night with a pamphlet.”
The pamphlet, “Understanding Smith-Magenis
Syndrome,” was created by the support organization PRISMS (Parents and Researchers Interested
in Smith-Magenis Syndrome). My husband and
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