This is the first in a three-part series covering different aspects of how people, their loved ones, and various institutions address the autism puzzle. Our series paves the way for Autism Awareness Month in April.
In pop culture, autism is often portrayed as a disorder of merit. The high-functioning protagonist of “The Good Doctor” and “The Big Bang: His Theory” trades a touch of social girlfriend skills for insight and talent with quirky affection and innocent charm. In real life, autism is often a disorder without merit, and few families find solace or comedy.
Matthew Fletcher’s first signs of autism came to an inexplicable end around 16 months, when the smiles and coolness that his mother Kate and father Gary learned to expect appeared.
“We were singing nursery rhymes, making patty cakes, and playing peek-a-boo,” says Kate. “He just quit all that.”
The change was profound.
Matthew’s disability created a chasm that his parents could not cross.
“He really stopped making eye contact or even interacting with us,” she adds.
Matthew was formally diagnosed with autism when he was three years old.
The Centers for Disease Control and Prevention defines autism spectrum disorders as “developmental disorders caused by differences in the brain,” characterized by problems with social communication and interaction, and restricted or repetitive behaviors or interests. and
The ability or ability to learn, move, or pay attention may also be present along the spectrum. Based on 2018 data, the CDC estimates that her 1 child in 44 in the United States (about 2%) is on this spectrum. Boys are affected four times as often as girls. The cause of autism is unknown. There is no single metric. The agency suggests that “environmental, biological, and genetic factors” are at work. Scientists have identified risk factors. This includes elderly parents, birth complications, and siblings with autism.
Wesley, the second son of the Fletcher family, followed a different developmental trajectory. By the time he was 18 months old, he could read simple words.
“We blew people away,” says Kate.
He surprised her friends with a trip to the Richmond Zoo by spelling out animal names from signs.
“We thought he was doing really well,” she says. “He’s really very bright and capable.”
Unfortunately, Wesley’s extraordinary abilities were caused by a kind of “hyperlexia.” This is an obsession with letters and numbers that enables young people to perform beyond their peers. “It’s another red flag for autism,” says Kate.
These skills plateaued when Wes turned four. “When it comes to social interaction,” she adds.
Wes struggled through the preschool program. His younger brother Matthew was “politely asked” to leave the daycare center several years ago.
Kate says some of the challenges her family faced were beyond their control, especially financial issues. “When Matthew was first diagnosed, our insurance company didn’t cover his year of speech or occupational therapy, which he desperately needed,” she says.
Other claims were denied, including part of the tuition fees for the private Dominion Autism School, which Matthew enrolled in after being fired from preschool. Kate says.
To put this into perspective, Matthew began using single words at the age of four and a half.
“I remember falling completely to the floor,” says Kate. “It was the first time in his life that he combined two words in a functional way.”
Needing something from the pantry, Matthew asked his mother, “Help me.” It was a bittersweet breakthrough.
Gary and Kate were also desperately in trouble. “We were selling everything that wasn’t fixed in the house to cover those bills and asking our families for help,” she says. It was difficult to get into and was rarely available for free.
By this time, they had discovered the Central Virginia Autism Society, a non-profit organization offering about 350 programs a year to families in the area. ASCV includes educational, recreational and social curricula. We also maintain an information referral program and a resource directory. “All the different topics you can imagine about autism,” says program director John Green.
ASCV’s reach of nearly 6,000 people annually creates a strong community of family advocates.
Gary celebrates their shared purpose. Gary participates in the ASCV fathers’ monthly group. Remind him that other fathers face similar challenges.
Kate agrees. “I definitely think our lives have gotten better.”
Henry, the third son in the Fletcher family, was born in 2014 when his brothers were 7 and 4 years old. Kate says his teacher has spotted red flags. The first quarter he was there, we had a really awkward parent-teacher conference. “
Henry’s developmental trajectory mirrors that of Matthew. Gary remembers Henry engaging, though not verbally, as a toddler: “I think he was 15 or 16 months when we saw regressions,” he says.
My parents were keen observers. “Before his second birthday,” says Kate.
After Henry was born, Kate’s parents left the Winchester home and moved to Richmond to help raise their grandchildren. They moved in with her daughter’s family in 2019.
Gary says his stepfather was a godsend. “While my mother-in-law and I have flexibility, it’s still a huge undertaking to get the kids to school, get them to therapy, and get them to appointments.”
The Fletcher boys, now aged 15, 12 and 8, are doing very well, their parents say. Matthew is an avid freshman at his Midlothian High School and Wesley is in his sixth grade at Tomahawk Middle (his mother also teaches his seventh grade social studies). High teacher-to-student ratio.
Henry is in his Robious Elementary class, using a photo exchange communication system to communicate his wants and needs by pointing to a binder full of photographs. He uses the same as his parents and grandparents.
The Fletchers are looking to the future and thinking about how they can support their boys as they grow up.
“At this point, we’re on pretty good terms,” says Kate. “We have many challenges in our daily lives, but I think we are in a very fortunate position.” Refusing to be isolated from public life.
“We weren’t a family that sat at home and tried to hide their kids,” says Gary. “Sometimes we get stares. Not everyone is used to that behavior.”
Sometimes boys make strange noises. Matthew, 15, still loves “Thomas and Friends” and “Sesame Street.” Boys can miss social cues – simple things like greetings and waving. An action called “elopement” puts each of the boys in danger of escaping. Because they lack a clear concept of danger, Kate said: I had to call her 911 multiple times to track down the missing child. “
Henry once climbed a 6-foot-high fence to reach another area.
The ankle bracelet tracker they wear could be a conversation starter. “Especially if you’re wearing shorts in the summer,” says Kate. “I mean, our boys are very markedly different.”
So are Kate and Gary, who are out of sync with many of their peers.
“It can be really lonely,” says Gary. “A lot of our friends say their kids are the age of our kids. They do different things, right? They’re preparing for college.”
The Fletchers say more people need to understand that television portrayals of autism are sanitized and spoiled. For Gary, their comedy is a double-edged sword, expanding awareness as well as “mitigating the severity of the condition.”
Kate’s feelings are also shaped by her experiences. Her autism did not benefit any of her children. “She feels like she’s been robbed of so many opportunities from them,” she says. ¦
This is the first of three parts.Next time on February 8: Autism Beyond School