Understanding Profound Autism: One Family's Journey of Round-the-Clock Care

Connor walked in circles around his father, then flopped down on the kitchen floor, got up and walked in circles again. His father turned the 9-year-old's repetitive behaviour into a chance to connect, lifting, tickling and spinning with his son.

Such spontaneous moments are common in households revolving around the needs of children with profound autism—those who need 24-hour care throughout their lives, have significant intellectual disabilities, and are non-speaking or minimally verbal.

Autism rates have been rising for decades, but an interesting development has emerged: the very factors that increased awareness may have inadvertently shifted focus away from those with the highest support needs.

The Broadening Spectrum

The autism spectrum disorder diagnosis is now very broad, including many individuals with low support needs. Improved awareness has helped more children receive diagnoses than in the past—and most of these cases are relatively mild.

This has sparked a growing movement to separate profound autism into its own diagnosis. The hope is that this would help ensure people with the highest needs receive appropriate support and services, and that research includes them adequately.

Researchers estimate around a quarter of all individuals with autism spectrum disorder have what experts now term "profound autism"—a designation introduced in 2021 by the Lancet Commission to describe people most significantly affected by the developmental condition.

Daily Life and Safety Concerns

For families raising children with profound autism, safety remains the primary concern. These children often require the same vigilance as preschoolers, remaining vulnerable to dangers like wandering into busy streets—even as they grow older.

Many families take creative protective steps, including GPS locators in shoes, sensors with alarms on windows and doors, and special locks requiring thumbprints on certain areas of the home. Some work with local authorities to implement tracking programmes.

Despite these challenges, many families refuse to live in isolation. Community outings, whilst requiring careful management, provide valuable experiences for children and help build public understanding.

The Debate Around a Separate Diagnosis

Advocates for a distinct profound autism diagnosis argue that people in this category lack appropriate treatments, adequate support services, and sufficient providers trained to handle their level of care. Additionally, 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," explains one advocate whose adult child has profound autism.

However, some autism researchers and self-advocates express concern about creating a separate label. They worry it could be stigmatising and reduce attention on the broader spectrum and individual needs of everyone affected.

These critics emphasise that the problem isn't being autistic—it's "the massive lack of supports and services" in society. They call for a unified voice advocating for services across the entire spectrum.

Supporting Development and Skills

Families often arrange for intensive therapy programmes to help their children develop skills. This might include applied behaviour analysis sessions focusing on language development, social skills, and gradually expanding limited diets.

Progress occurs in small, carefully structured steps. For example, introducing new foods might begin with simply seeing the item on a plate, then touching it, then smelling it or putting it to the lips—with several more stages before actual consumption.

The long-term goal of such interventions is helping children become more independent, even if complete independence isn't achievable.

Looking Towards the Future

One significant concern looms for many families: what happens when educational support ends at age 22? Parents working full-time often struggle to understand how they can possibly earn enough to provide for their children throughout adulthood.

The question of what happens when parents are no longer able to provide care weighs heavily on many families. This makes the discussion around appropriate diagnosis, support services, and long-term care planning all the more urgent.

What Singapore Families Should Know

Whilst this story originates from the United States, it raises important questions relevant to Singapore families:

• Are current support systems adequate for individuals with the highest needs?
• Does research include the full spectrum of autism presentations?
• What long-term care options exist for adults with profound autism?
• How can we balance individual needs across the spectrum whilst ensuring those requiring round-the-clock care receive appropriate support?

These are conversations worth having as we work towards a more inclusive and supportive society for all individuals with autism and their families.