One mother detailed waking up at 3am to her 11-year-old son covered in faeces.

The mother of a 4-year-old said her son had just started making eye contact, but she has never heard him say ‘I love you’ and she likely never will.

But now the new diagnostic term ‘profound autism’ has given this “marginalised” community a voice as fresh Australian research reveals as many as one in four autistic children in Australia could meet this classification.

Profound autism describes autistic people aged 8 and over who have little or no language, an IQ of less than 50, and require 24-hour supervision and support to survive.

Australian clinicians and researchers are slowly adopting the term since it was introduced in 2021 by The Lancet medical journal.

Gold Coast mother Kathrine Peereboom, 47, with her three autistic sons Oliver, 12, Joshua, 11 and Tyler, 10. Picture: Supplied

Gold Coast mother Kathrine Peereboom, 47, has two sons with profound autism: Oliver, 12 and Joshua, 11, and a youngest son Tyler, 10 diagnosed as level 3 autism.

Ms Peereboom said the challenges children with profound autism and their carers face are universally different to those faced by others in the autism community.

“Today my morning started at 3am when my 11-year-old woke up with faeces all over the place,” she said.

“My kids need to be spoon fed.

“If we go out in public, my children require two adults to one child.”

Ms Peereboom and her sons celebrating Tyler’s 10th birthday. Picture: Supplied

Sydney mother Grace Fox, 45, said families like hers were suffering in silence.

“Profoundly autistic families are living separate from society as they’re dealing with such severe issues at home,” Ms Fox said.

“Families with profound autism are frequently housebound — meeting up with friends in a park is often an exhausting experience or simply impossible.

Grace Fox with husband Jack and son Noah. Picture: Supplied

“The reality is dark and despairing.”

Ms Fox said she has only recently shared eye contact with her son, but had never heard him say “mum”.

Both mothers reiterated their unconditional love for their children which drives them to be their advocate, despite the daily hardship.

Ms Peereboom and Ms Fox said the new diagnostic term of profound autism captures the severity of their children’s condition and provides a much-needed distinction from other autistic people.

Ms Peereboom said adopting the term was not meant to exclude or diminish other autistic people’s experience.

“Profound autistic persons can have major meltdowns where they are break your bones or give you black eyes every single day,” she said.

“That’s very different from an autistic person who can go to a job for eight hours a day and drive a car and go to the pub afterwards.

“They have a shared diagnosis.

“We’re not diminishing anybody’s experience.

Ms Peereboom is a tireless advocate for her children and the wider profound autism community. Picture: Supplied

“What we are validating and what we are asking for is recognition that our cohort deserves.

The mothers said they were concerned other voices in the autism community were drowning out their children’s suffering, especially as discussion around Thriving Kids doubles down on classifications such as mild and moderate autism.

“When Thriving Kids was announced I noticed a lot of backlash in the autism community around labels,” Ms Fox said.

“I don’t think labels like mild, moderate and profound diminishes others experiences.

“When we refuse to characterise by severity, we are performing clinical gaslighting on those who require 24-hour support for their survival and safety.”

Ms Peereboom said she was inspired to speak up as her sons have no voice of their own. Picture: Supplied

Dr Kelsie Boulton is a senior research fellow in child neurodevelopment at the University of Sydney.

She conducted an Australia-first study into the prevalence of profound autism in 513 autistic Australian children, finding one in four met, or were at risk of meeting, the criteria for profound autism.

Dr Boulton said further adoption of the term could empower parents to advocate for their children and clinicians and researchers to better understand severe autism.