As some people push to make profound autism its own diagnosis, this family is raising twins with it

AYER, Mass. — Connor Murphy walked in circles around his father, then collapsed on the kitchen floor, got up and walked in circles again.

His father turned the 9-year-old’s repetitive behavior into an opportunity to bond. “Do you want me to come pick you up?” asked Matthew Murphy, lifting, tickling and spinning with his son.

Such spontaneous moments are common in the Murphy household, which revolves around the needs of Connor and his twin brother Ronan, both of whom have profound autism.

“They will need 24/7 care for the rest of their lives,” their father said. “Life will be a challenge for them and we must prepare them as best we can. »

Autism rates have been rising for decades, and two of the main reasons for this increase have, strangely, shifted the focus away from people with 24-hour needs. The autism spectrum disorder diagnosis, adopted in 2013, is now very broad, including many people with low support needs. Additionally, increased awareness of the disease has resulted in many more children being diagnosed than in the past – and most of these cases are relatively mild.

At the same time, the Trump administration is promoting unproven and debunked claims about the causes of autism, which experts say are confusing efforts to understand the disease and fueling misinformation that threatens public health, even as officials devote more money to research.

There is now a growing trend to separate profound autism – in which people need constant care throughout their lives, have some level of intellectual disability and are mute or minimally verbal – into its own diagnosis. The hope is that this would help ensure that people like Connor and Ronan get the support and services they need and that research includes them.

In the United States, an estimated 1 in 31 children suffer from autism spectrum disorder. Researchers estimate that about a quarter of them suffer from “profound autism”, a term introduced in 2021 by a group of experts, the Lancet Commission, to describe people most disabled by developmental disorders.

But some in the autism community worry that creating a separate diagnosis will reduce attention to the broader spectrum and everyone’s individual needs.

Andy Shih, scientific director of Autism Speaks, said that no matter where people stand in the debate, “there is absolutely no doubt that we need to raise more awareness about the needs of this group.”

The Murphys knew early on that their children had a higher than average risk of neurodevelopmental disorders. Twin births are associated with a higher risk. Some studies suggest that the type of in vitro fertilization used is also important.

The boys arrived almost a month early. At first, the couple wasn’t too worried about the babies missing developmental milestones; twins born prematurely tend to be a little late. But when the boys were no longer walking, around age 1 1/2, the Murphys sought an evaluation and began speech and occupational therapy. At age 4, the boys received an official diagnosis of Level 3 autism, which represents the highest level of need, such as profound autism.

Today, at 9 years old, they often speak in sentences of one to three words. They need intense reminders and guidance for daily activities like showering and brushing their teeth. They perform academically at the level of 3 1/2 year olds and love Sesame Street and preschool toys. And they require the same vigilance as preschoolers because they are vulnerable to dangers like rushing across busy streets.

Last summer, Connor briefly left the house in his pajamas, without shoes, and walked a half-mile.

“Our main concern is their safety,” said their mother, Andrea Murphy, 47.

The Murphys took creative steps to protect the twins, including installing GPS trackers in their shoes, sensors with alarms on all windows and doors to the outside, and locks that required fingerprints on the basement doors and a food cupboard. They worked to fence off the boys’ schoolyard and raised money so their local police could start Project Lifesaver, a search and rescue program.

Yet they are hypervigilant whenever their children are with them and awake. “If it’s three in the morning, it’s three in the morning,” their father said.

But security concerns don’t stop them from taking the boys into the community.

On a snowy Saturday, the family went to Target. During the ride, Ronan rocked back and forth in his seat. Inside the store, Andrea Murphy put her hand on Connor’s back to make him feel safe as he walked behind the shopping cart.

Meanwhile, her husband was heading to a toy aisle with Ronan, who spotted some Bluey figurines. The toys went into the cart, then put back on the shelf because the family already has the same ones at home. This upset Ronan and he collapsed to the floor. As other customers walked by, his father gently calmed him, holding his hands to help him up.

Despite these challenges, the Murphys see these outings as beneficial – for them, for the boys and for the community that sees them.

“We can’t live in a bubble,” said Matthew Murphy, 48. “We want them to experience life.”

Wherever they are, the Murphys focus on finding joy in the midst of struggle. They nurture Ronan’s artistic, outgoing, loud personality and Connor’s quiet, reserved nature. And they relish the affection both boys show them — like when Connor snuggled up to his mother while they sang “You Are My Sunshine” together.

“They bring you light, no matter what bad day you’re having,” their father said. “Everything is unconditional love.”

In the past, boys might have been diagnosed with autistic disorder — one of five subtypes, along with Asperger’s, of a diagnosis called pervasive developmental disorders. But in 2013, the American Psychiatric Association removed that diagnosis and created autism spectrum disorder.

Judith Ursitti, president of the Profound Autism Alliance, is among those who now want profound autism to be separated. People in this category lack appropriate treatment, supports and providers trained enough to manage their level of care, she said. And the vast majority of clinical research does not include them.

“If you don’t have research, you won’t have treatments. You won’t have feasible services and supports,” said Ursitti, whose adult son has profound autism. “There are people across the spectrum who have high and intermittent support needs. The difference with our population is that they are constant.”

But Dena Gassner of Drexel University’s Autism Institute — a senior autistic research scientist and mother of an autistic adult with moderate support needs — said she has difficulty accepting the idea of ​​giving someone the label of profound autism. She said it could be stigmatizing.

She said there was nothing wrong with being autistic; the problem lies in “the massive lack of supports and services” in our society. “We need to come together with one voice to talk about services across the spectrum. »

Matthew Murphy doesn’t see the harm in a new label identifying a distinct level of need.

In the meantime, he and his wife are doing everything they can to help their children thrive.

This includes having professionals from Acton Community Autism Therapists come to the home for three hours of applied behavior analysis each weekday after school.

One evening, Ronan sat with Julia Orareo at the kitchen table, practicing his language skills by giving her instructions on how to draw an elephant.

“Draw a body,” he said, and she did.

“How about an eye?” » she prompted.

He thought for a second, then replied, “Draw an eye.” »

“Good sentence!” she said.

A few minutes later, he implored, “Give a hug? And they did.

Connor, who had been practicing language and matching skills in the living room, soon joined his brother at the kitchen table. They began a long process of trying new foods intended to expand their limited diet: cherry tomatoes for Connor and broccoli for Ronan.

“Seeing it on the plate is kind of the first step. The second step is actually touching it. The third step would be either smelling it or bringing it to their lips,” Andrea Murphy said, explaining that there are even more steps after that.

The long-term goal of these classes is to help boys become more independent.

A deadline of sorts is looming: age 22, when public support for children’s education will end in Massachusetts. The Murphys both work full time – Matthew at a nonprofit that helps wounded veterans and Andrea in the health care field – but they don’t know how to earn enough to support their children throughout their adult lives.

And they are afraid of what will happen after they leave.

“You never know when God is going to take us from this green earth,” Matthew Murphy said. “What keeps me up at night is what their future will look like…That’s the big unknown.”

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