Date Published: July 19, 2019
Leigh Merryday Porch remembers every detail about the moment she realized her baby had autism. A teacher, she was entering grades on a laptop while her 10-month-old son, Callum, sat on the rug in front of her. Callum was watching Yo Gabba Gabba, a children’s show, on TV.
Suddenly she heard a loud whooshing sound. She looked up and saw Callum flapping his arms. “I knew that flapping. I’d seen it before.” She had watched relatives with autism make the same motion.
“It all came to me in a flash,” she says. “All sorts of things started to connect.” Callum would smile and glance at her, but not in the way other babies did, she thought. He took longer than other children to meet some milestones. More than a year later, a specialist confirmed her hunch: Callum had autism.
Since then, autism has taken her in new directions. She changed teaching jobs, started a nonprofit to help people with special needs, and launched the popular “Flappiness Is…” autism blog.
She is also active in SPARK, the largest genetic study of autism. Her family — which includes husband Sean Porch, daughter Bronwyn, 11, and Callum, 10 — all joined SPARK. “I had this feeling my family’s DNA would be of interest,” she explains. “We’re just chock full of autism.”
A Desire to Reach Out to Other Families
After Callum’s diagnosis at age 2, Merryday Porch began navigating the special education system in their small town in northeast Florida. The journey was not smooth. She and the school district disagreed about the right services for Callum. “It wasn’t fun, because I was also employed by that same school district.” She had to advocate effectively for Callum while also building a good relationship with the school. That process involved trial and error, she says. Both sides resolved the conflict. And she wanted to share what she had learned with other families likes hers.
She started an autism blog in 2011, hoping to share her insights with a few dozen readers, perhaps. “I just thought, Oh, I will go start a blog!” she says. “I didn’t realize how many there were.”
She had read a few autism blogs that focused on difficult behaviors and “all the stuff that was ugly,” she says. “I didn’t want to paint that kind of a portrait of my son.” So she named her blog “Flappiness Is…,” a play on the phrase, “Happiness is …” as in “Happiness is a warm puppy” and other sayings. She wanted to tell a story about autism that went beyond its challenges. She says, “There is still so much more to tell than just the flapping.”
In her second blog post, she directly addressed parents of students with special needs: “I need to make a big apology. You see, I’ve been teaching now for fourteen years, but I have only just recently joined your ranks.” She tried to help, the blog continues. “But, like a lot of teachers who Just Don’t Get It, I thought doing right by him meant giving him extra time on assignments and not allowing him to fail my class. I thought being extra nice and seating her at the front of the room was what you needed from me.”
“But you needed more. And I didn’t understand that. You needed communication. A lot of it. … You needed me to understand that, if you’ve met one special-needs child, you’ve met one special-needs child. You needed me to understand that I was teaching your child, not an I.E.P.” An IEP is an Individualized Education Program for a student with a disability.
That post, “An Apology from your Child’s Former Teacher,” went viral. “All of sudden I was hearing from people all over the world. And about three weeks after that another one went semi-viral,” she says. A deft and engaging blogger, she tackled topics that resonated with many parents. She blogged about inclusion and acceptance, about people who brushed off her autism concerns, and about living “in a constant state of uncertainty of the future.” And her blog discussed moderate to severe autism, which may get less attention in the media and in research.
Tackling Wandering in Autism
Merryday Porch wanted to do more to help families. Several years ago, she began to focus on a dangerous behavior that affects nearly half of children with autism: wandering or running away from safe places. Some children have drowned or been injured after wandering. The behavior is also called elopement.
Callum also would wander. Merryday Porch recalls an incident when he was 5 and visiting a relative. The relative assigned to watch Callum happened to turn away for a few seconds at the same time that someone else opened a locked door. In those few moments, Callum left the house, and his family ran outside to find him. His parents could see the banks of the St. John’s River across the road. Callum could not swim. “I felt absolute panic,” Merryday Porch says.
“Then my husband could hear him squealing and stomping. Callum had crossed the street and gone to the house of a neighbor who had a swimming pool. We found him outside the gate to the pool, splashing in the puddles,” she says. He was safe.
She contacted the county sheriff’s department to see what could be done about wandering. That led her to create Putnam Project Lighthouse, a nonprofit that provides free GPS tracking devices to local residents with conditions that cause wandering. She is the president.
She noticed that some children wandered from schools. So she authored an elopement protocol for schools called The SPECTRUM Alert. It was published on her blog and in the Huffington Post. Among other things, she recommends that schools identify, in advance, where a particular student is likely to go if he wanders. One employee would be designated to go to that place as soon as the student goes missing. Other staff would contact police or the sheriff’s department, among other steps. Some school districts have used her plan to develop their wandering procedures, she says.
These days, Merryday Porch has less time for blogging. She now works as an academic coach for adult students, and she recently earned a master’s degree in autism spectrum disorders. She makes presentations about autism to school employees, law enforcement, and others. She also serves on SPARK’s Community Advisory Council, which provides input to the research project.
An Autism Question for Researchers
One of her biggest questions — and a reason for her interest in research — is why does autism affect people so differently? For example, why do some speak fluently, while others, like Callum, communicate with single words, picture symbols, and an iPad? “I am very interested in genetics, mainly because I want to know why the spectrum is as wide as it is,” she explains.
She hopes researchers can find therapies that would “give those on the spectrum the greatest amount of independence that they are capable of having.” But she is not asking for a cure.
In one blog post, she addresses her son: “If you were cured tomorrow, my worries would be eased — but my heart would be broken.”
“Because I love you. You you. Not some hypothetical you. Not the you you might have been had you not turned out to be you. It’s all very complicated. And it’s all very simple.”
“If you were cured tomorrow, I’d miss you.”