As some people push to make profound autism its own diagnosis, this
family is raising twins with it
[February 16, 2026]
By LAURA UNGAR
AYER, Mass. (AP) — Connor Murphy walked in circles around his dad, then
flopped down on the kitchen floor, got up and walked in circles again.
His dad turned the 9-year-old’s repetitive behavior into a chance to
connect. “Want me to pick you up?” Matthew Murphy asked, 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, who both
have profound autism.
“They’re going to need 24-7 care for the rest of their lives,” their
father said. “Life will be a challenge for them, and we have to prepare
them as best we can.”
Autism rates have been rising for decades, and two of the main reasons
for the increase have, in a strange twist, taken some of the focus off
helping people with round-the-clock needs. The diagnosis of autism
spectrum disorder, adopted in 2013, is now very broad, including many
people with low support needs. Also, better awareness of the condition
has helped many more children get diagnosed than in the past — and most
of those cases are relatively mild.
At the same time, the Trump Administration is promoting unproven and
debunked claims about what causes autism, which experts say muddles
efforts to understand the condition and fuels misinformation that
threatens public health, even as officials funnel more money into
research.
There's now a growing push to separate profound autism — in which people
need constant care for life, have a certain level of intellectual
disability and are nonspeaking or minimally verbal — into its own
diagnosis. The hope is that it 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 have autism spectrum
disorder. Researchers estimate around a quarter have “profound autism,”
a term introduced in 2021 by a group of experts, the Lancet Commission,
to describe people most disabled by the developmental condition.
But some in the autism community worry that creating a separate
diagnosis would reduce attention on the broader spectrum and the
individual needs of everyone on it.
Andy Shih, chief science officer for Autism Speaks, said no matter where
people fall on the debate, “there’s absolutely no doubt that we need to
elevate awareness about the needs of this group.”
With profound autism, safety is a challenge
The Murphys knew early on that their children had a greater-than-average
chance of having neurodevelopmental disabilities. Twin births are
associated with a higher risk. Some studies suggest the type of in vitro
fertilization they used is too.
The boys arrived nearly a month early. At first, the couple wasn’t too
concerned that the babies missed developmental milestones; twins born
prematurely tend to run a bit behind. But when the boys weren’t walking
at around 1 ½ years old, the Murphys sought an evaluation and began
speech and occupational therapy. At age 4, the boys were officially
diagnosed with level 3 autism, representing the highest level of need,
like profound autism.
Now, at 9, they often speak in one- to three-word sentences. They need
reminders and intense guidance with daily activities like showering and
brushing their teeth. They perform academically at the level of
3½-year-olds and like Sesame Street and preschool toys. And they require
the same vigilance as preschoolers because they’re vulnerable to dangers
like darting into busy streets.
Last summer, Connor briefly left the house in his pajamas, without
shoes, and walked half a mile.
“Our number one concern is their safety,” said their mom, Andrea Murphy,
47.
The Murphys have taken creative steps to protect the twins, including
putting GPS locators in their shoes, sensors with alarms on all the
windows and doors to the outside and locks requiring thumbprints on
doors to the basement and a food cabinet. They worked to get the boys’
schoolyard fenced in and raised money for their local police to have
Project Lifesaver, a search-and-rescue program.
Still, they are hypervigilant whenever their children are with them and
awake. “If that’s at three in the morning, it’s at three in the
morning,” their dad said.
Managing struggles, delighting in joys
But safety concerns don’t stop them from taking the boys out into the
community.
One snowy Saturday, the family headed to Target. On the ride over, Ronan
rocked back and forth in his seat. Inside the store, Andrea Murphy put
her hand on Connor’s back to make him feel secure as he walked behind
the shopping cart.
Meanwhile, her husband made his way down a toy aisle with Ronan, who
spotted Bluey figurines. The toys went in the cart, but then back on the
shelf because the family already has the same ones at home. This upset
Ronan, and he collapsed on the floor. As other shoppers walked by, his
dad quietly calmed him, holding his hands to help him up.
Despite such challenges, the Murphys view these outings as beneficial --
for them, the boys and the community that sees them.
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Ronan Murphy works on a sorting problem during an applied behavior
analysis after school in his home in Ayer, Mass., on Friday, Jan.
16, 2026. (AP Photo/Shelby Lum)
 “We can’t live our lives in a
bubble,” said Matthew Murphy, 48. “We want them to experience life.”
Wherever they are, the Murphys focus on the joy
amid the struggles. They nurture Ronan’s artistic, outdoorsy,
boisterous personality and Connor’s quiet and reserved nature. And
they savor the affection both boys shower on them -- like when
Connor nuzzled into his mom as they sang “You Are My Sunshine”
together.
“They bring a light to you no matter how bad of a day you’re
having,” their dad said. “It's all unconditional love.”
Profound autism diagnosis debated
In the past, the boys may 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 separated out. People in this
category lack appropriate treatments, supports and enough providers
trained to handle their level of care, she said. And the vast
majority of clinical research doesn’t include them.
“If you don’t have research, you won’t have treatments. You won’t
have achievable services and supports,” said Ursitti, whose adult
son has profound autism. “There are people across the spectrum who
have high support needs that are intermittent. The difference with
our population is they’re constant.”
But Dena Gassner of Drexel University’s autism institute -- an
autistic senior research scientist and mother of an autistic adult
with moderate support needs -- said she struggles with the idea of
assigning someone the label of profound autism. She said it could be
stigmatizing.
She said there’s nothing wrong with being autistic; the problem lies
in “the massive lack of supports and services” in our society. “We
need to come together in a unified voice to talk about services for
the entirety of the spectrum.”
As children with profound autism grow, so do concerns about their
future
Matthew Murphy doesn’t see the harm in a new label to identify a
separate level of need.
In the meantime, he and his wife do all they can to help their
children thrive.
That includes arranging for professionals from The Autism Community
Therapists in Acton to come to the house for three hours of applied
behavior analysis every 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.
Minutes later, he implored, “Do a hug?” And they did.
Connor, who was 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 designed to expand their
limited diets -- cherry tomatoes for Connor and broccoli for Ronan.
“Seeing that on the plate is kind of step one. Step two is actually
touching it. Step three would be kind of either smelling it or
putting it to their lips,” Andrea Murphy said, explaining that there
are even more steps after that.
The long-term goal of such lessons is to help the boys become more
independent.
A deadline of sorts looms: age 22, when public educational support
for children ends in Massachusetts. The Murphys both work full-time
-- Matthew at a nonprofit that helps injured veterans and Andrea in
health care -- but they don’t know how they can possibly earn enough
to provide for their children throughout adulthood.
And they fear what will happen when they're gone.
“You never know when God is gonna take you off this green earth,”
Matthew Murphy said. “The thing that keeps me awake at night is what
their future looks like … That’s the great unknown.”
___
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