By Amy Martin
Carly Fulgham is recognized for quite the impressive life and career. She is a mother, wife, and Vice President of Document Services Strategy for a major worldwide bank. She is also the first autistic President of the Board of Directors of the Autism Society of Ventura County, VP of the Autism Society of California, and is on the Board of The Art of Autism.
She was recently a guest on “Spectrumly Speaking,” A Different Brains® podcast, with hosts Haley Moss and Dr. Lori Butts. Carly explains that for the first twenty years of her life she didn’t realize that she had autism. She had been using workarounds until she experienced burnout and needed Social Security disability.
One day, she found an article about a boy with autism and suddenly her own
disability became clear. She was finally diagnosed at 28 years old. Becoming
involved in the Autism Society shortly thereafter was a no-brainer.
Navigating her disability on her own was one thing, but doing so with children
was another. She knew that she had a complicated medical history and that she (and her medical team) would need to be prepared for her specific needs, and communication was key.
Carly had prepared a very long birth plan, including a huge section about
her sensory issues, and how she might respond to pain and other experiences. She discusses how certain types of touch can trigger her issues, how variations of feather-light touches and knife-sharp pain may cause different reactions.
When she noticed that one nurse during her labor communicated differently than her, she politely requested a different nurse, and possible miscommunications were averted. She even prepared for the
sounds and the chaos in the operating room by wearing noise-canceling
headphones.
Carly stresses that many women don’t even fi nd out that they have autism
until their own children are diagnosed, meaning that maternity nurses have likely cared for plenty of undiagnosed autistic patients. She says the nurses are, “Used to all kinds of sensory things like, ‘I have to have low music playing,’ or ‘I have to have this lavender scent’ or ‘I have to have it scent-free.’”
Haley Moss adds that there already exists a bias in medicine for women,
and for autistic people in particular, where pain is often not taken seriously
or believed. She shares her own fears on becoming an autistic mother in the future, asking, “What if I’m in pain and someone doesn’t believe me because they think autism impairs my sense of judgment?”
Carly explains hospitals in general have a poor system for pain scales, replying
that often only a diagram with facial expressions and numbers is available to
measure pain. For the autistic patient, this vague representation may be difficult to understand. Someone’s level four pain may be someone else’s eight. Carly stresses that you have to be really descriptive, giving
examples like “It feels like someone’s stabbing me with a knife”, or “It feels like ants are crawling on me.”
Carly notes that through her non-profit work, her autism, and the awareness of
the developmental stages have helped her become a better mother.
She recounts a story about her son from before he could talk, where they were
sitting at the breakfast table and he started screaming. Carly says she took
a moment and thought, ‘Okay, there’s something that’s upsetting him’. So she
followed his eyeline and he was staring outside in the backyard at a blue ball.
She asked her son, “Do you want me to put the blue ball away?” and he nodded
his head in the middle of his wailing. So Carly went out, put the ball in the box it’s normally kept in, and he instantaneously stopped screaming.
For more of this conversation you can listen to the entire podcast, or read the transcript, here:
https://www.differentbrains.org/motherhood-on-the-autism-spectrum-with-carly-fulgham-spectrumly-speaking-ep-107/.