The Murphys describe their days as a blend of constant vigilance, structured therapies and efforts to keep their sons connected to the wider world. In Ayer, Massachusetts, Matthew Murphy says Connor and Ronan will require 24-7 care for the rest of their lives, and the family has reorganized daily routines around that reality. They also try to treat difficult moments as opportunities to connect and learn what works for the boys, including when Connor turns repetitive behaviors into brief openings for engagement with his father.
For Connor, those needs show up in speech and daily living; the family says he and his twin brother often speak in one- to three-word sentences and require reminders and intense guidance with tasks such as showering and brushing teeth. The Murphys say the boys perform academically at the level of 3 1/2-year-olds and enjoy activities like Sesame Street and preschool toys, but they also require preschool-level vigilance because the children can be vulnerable to hazards such as darting into busy streets. The family says it has responded with safety technology and planning, including GPS locators in the boys’ shoes, sensors with alarms on windows and doors, and locks requiring thumbprints for doors to the basement and a food cabinet.
Their attention to safety extends beyond the home. After Connor briefly left the house in his pajamas without shoes and walked about half a mile last summer, the family also says it worked to fence in the schoolyard and raised money for their local police to have Project Lifesaver, a search-and-rescue program. Matthew Murphy said the household’s preparation means the parents are hypervigilant whenever the twins are with them and awake, “If that’s at three in the morning, it’s at three in the morning.”
Even so, the Murphys say outings remain part of keeping the twins part of community life. On a snowy Saturday, the family went to Target, and Andrea Murphy said she put her hand on Connor’s back to help him feel secure as he walked behind the shopping cart. Matthew Murphy made his way down a toy aisle with Ronan, who noticed Bluey figurines; the toys ended up back on the shelf because the family already had them at home, a change the family says upset Ronan. Matthew Murphy said he then quietly calmed him by holding his hands to help him up.
Matthew Murphy said the family cannot live in a bubble and “We want them to experience life.” He and Andrea Murphy frame the trips and daily work around balancing challenges with moments of joy, including artistic interests, time outdoors and affectionate exchanges between the boys and their parents. The family described Connor nuzzling into his mom as they sang “You Are My Sunshine” together, and Matthew Murphy said, “They bring a light to you no matter how bad of a day you’re having,” adding, “It’s all unconditional love.”
The Murphys’ family experience aligns with a wider U.S. debate about how autism diagnoses are defined and how resources are allocated. Autism rates have risen for decades, and the article says two main factors have shifted focus away from round-the-clock care needs: the diagnosis of autism spectrum disorder adopted in 2013 is broad, including people with low support needs, and increased awareness has led to more children being diagnosed, many with milder autism. At the same time, the article says the Trump administration has promoted unproven and debunked claims about causes of autism, a move experts say muddles efforts to understand autism and fuels misinformation that threatens public health while officials funnel more money into research.
Within the autism community, some advocates and researchers are pushing to separate “profound autism” from the broader spectrum. Researchers estimate that about a quarter of autistic children have profound autism, a term introduced in 2021 by the Lancet Commission to describe people most disabled by the developmental condition. Judith Ursitti, president of the Profound Autism Alliance, said she and others want the category separated out because people in it, she said, lack appropriate treatments, supports and enough trained providers for the level of care, and because much of clinical research does not include them. Ursitti said, “If you don’t have research, you won’t have treatments. You won’t have achievable services and supports,” and she added that, unlike those on the spectrum who have high support needs intermittently, “The difference with our population is they’re constant.”
Other autism advocates and researchers oppose a separate label. Dena Gassner, an autistic senior research scientist and mother of an autistic adult with moderate support needs at Drexel University’s autism institute, said she struggles with the idea of assigning someone the label of profound autism, saying it could be stigmatizing. Gassner said there is nothing wrong with being autistic and that the problem lies in “the massive lack of supports and services” in society, arguing for a unified effort focused on services for people across the spectrum.
For the Murphys, the discussion is partly about matching the label to the level of daily assistance they say their sons need, and partly about planning for what comes after childhood. Matthew Murphy said he does not see harm in a new label if it helps identify a separate level of need, while the family continues to arrange therapies in their home and schedule around school and daily routines. Andrea Murphy said professionals from The Autism Community Therapists in Acton come to the house for three hours of applied behavior analysis every weekday after school, and she described how the family’s feeding and language practice work toward greater independence.
A key deadline, the Murphys said, comes at age 22 in Massachusetts, when public educational support for children ends. Both parents work full-time—Matthew Murphy at a nonprofit that helps injured veterans and Andrea Murphy in health care—but they said they do not know how they will be able to provide enough for Connor and Ronan throughout adulthood. They also said they fear what happens if they are no longer able to provide care, with Matthew Murphy saying, “You never know when God is gonna take you off this green earth,” and adding, “The thing that keeps me awake at night is what their future looks like … That’s the great unknown.”