Autism Diagnosis Urgency Grows: Lifelong Needs Demand Deeper Understanding

YESTERDAY, Massachusetts, USA (AP) — Connor Murphy was walking in circles around his dad, then dropped to the kitchen floor, got up, and resumed his circling.

His father, Matthew Murphy, turned the repetitive behavior of his 9-year-old into a bonding moment by asking, “Do you want me to pick you up?” as he lifted him, tickled him, and spun around with his son.

Such spontaneous moments are usual at the Murphy home, 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,” stated their father. “Life will be challenging for them, and we must prepare them as best we can.”

Autism rates in the United States have been climbing for decades, and two major reasons for this increase have oddly shifted some focus away from helping those with lifelong needs.

The diagnosis of Autism Spectrum Disorder, revised in 2013, now encompasses a broad range and includes many individuals with minimal support needs. Moreover, increased awareness has enabled more children to be diagnosed than in the past, with most cases being relatively mild.

Meanwhile, the Trump administration is backing debunked and unverified theories about what causes autism, which experts say clouds efforts to understand the condition and feeds misinformation that endangers public health, even as more funds are directed towards research.

There is now momentum to categorize profound autism—an extreme form where individuals require constant lifelong care, have significant intellectual disabilities, and little to no speech—into its own diagnostic category. This initiative aims to ensure that people like Connor and Ronan receive the necessary support and services, and that research includes them.

In the United States, it is estimated that 1 in 31 children is diagnosed with Autism Spectrum Disorder. Researchers estimate that about a quarter of these individuals have profound autism, a term introduced in 2021 by a group of experts, the Lancet Commission, to describe those most severely disabled by this developmental condition.

However, some within the autism community worry that creating a separate diagnosis might dilute focus on the broader spectrum and the unique needs of all individuals within it.

Andy Shih, Chief Science Officer at Autism Speaks, noted that regardless of one’s position in the debate, “there is absolutely no doubt that we need to raise awareness about the needs of this group.”

With profound autism, safety is a challenge

The Murphys knew early on that their sons had a higher-than-average likelihood of neurodevelopmental disabilities. Twin births are linked with a higher risk. Some studies suggest that the type of in-vitro fertilization they used does as well.

The boys were born almost a month early. Initially, the couple was not overly concerned about the babies not reaching certain developmental milestones; twins born prematurely tend to be somewhat delayed. However, when the boys were not walking by one and a half years old, the Murphys sought an evaluation and began speech and occupational therapy. By age 4, the boys were officially diagnosed with level 3 autism, indicative of the highest level of need, akin to profound autism.

Now, at age 9, they often speak in one- to three-word phrases. They need reminders and substantial guidance for daily activities like showering and brushing their teeth. They perform academically at the level of 3 and a half-year-old children and enjoy Sesame Street and preschool toys. They require the same vigilance as preschoolers because they are vulnerable to dangers such as running into busy streets.

Last summer, Connor briefly left the house in pajamas, without shoes, and walked nearly a kilometer (half a mile).

“Our number one concern is their safety,” expressed their mom, Andrea Murphy, aged 47.

The Murphys have implemented creative measures to safeguard the twins, including GPS trackers on their shoes, sensors with alarms on all exterior windows and doors, and fingerprint-requiring locks on basement and food cabinet doors. They worked to have their children’s schoolyard fenced and raised funds for the local police to have Project Lifesaver, a search and rescue program.

Still, they remain constantly vigilant whenever their sons are with them and awake. “If that’s at three in the morning, then it’s at three in the morning,” said their dad.

Handling the challenges, relishing the joys

Safety concerns do not prevent them from taking the kids out into the community.

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

Meanwhile, her husband navigated a toy aisle with Ronan, who spotted Bluey figures. The toys went into the cart but were then returned to the shelf because the family already had the same ones at home. This upset Ronan, and he collapsed on the floor. As other shoppers passed by, his dad quietly soothed him, holding his hands to help him stand.

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

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

Wherever they are, the Murphys focus on the joy amid the hardships. They nurture Ronan’s artistic, outdoors-loving, and boisterous personality, and Connor’s calm and reserved nature. And they cherish the affection both boys show them, like when Connor snuggled against his mom as they sang “You Are My Sunshine” together.

“They bring you light no matter how bad your day has been,” his dad maintained. “It’s all unconditional love.”

The debate over the diagnosis of profound autism

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

Judith Ursitti, chair of the Profound Autism Alliance, is among those now wanting profound autism to be separated. Individuals in this category lack adequate treatments, supports, and enough trained providers to handle their level of care, she indicated. 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 services and supports,” stated 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 that they are constant.”

But Dena Gassner, from the autism institute at Drexel University—a leading autistic researcher 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 noted that it could be stigmatizing.

She indicated that there’s nothing wrong with being autistic; the problem is “the huge lack of supports and services” in our society. “We need to come together with a unified voice to talk about services for the entirety of the spectrum.”

As children with profound autism grow, concerns about their future also grow

Matthew Murphy sees no harm in a new label to identify a separate level of need.

Meanwhile, he and his wife do everything they can to help their sons thrive.

This includes coordinating for professionals from The Autism Community Therapists in Acton, Massachusetts, to come to the house 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 encouraged.

He thought for a second and then responded, “Draw an eye.”

“Great sentence!” she said.

Minutes later, he pleaded, “Hug?” And they hugged.

Connor, who was practicing language and matching skills in the living room, soon joined his brother at the kitchen table. They began a lengthy process of trying new foods designed to broaden their limited diets: cherry tomatoes for Connor and broccoli for Ronan.

“Seeing that on the plate is like step one. Step two is actually touching it. Step three would be smelling it or putting it on their lips,” explained Andrea Murphy, adding that there are even more steps after that.

The long-term goal of these lessons is to help the children become more independent.

A sort of deadline is approaching: 22 years old, when public educational support ends for children in Massachusetts. The Murphys both work full-time—Matthew in a nonprofit that assists injured veterans and Andrea in the health sector—but they don’t know how they could earn enough to support their sons into adulthood.

And they fear what will happen when they are no longer around.

“You never know when God will take you from this green earth,” expressed Matthew Murphy. “What keeps me up at night is what their future looks like… That’s the great unknown.”