The Halifax mother of three said she has been told by IWK Health Centre staff across several departments that the Provincial Preschool Autism Service (PPAS) program has moved away from a needs-based model toward one that is primarily age-based.
Conflicting messages
Suffering in silence
While Rose waits to get the critical assessment, Lulu suffers in silence.
“There are parts of our days where Lulu is such a lovely, energetic, sweet, little cheeky child. But she has big, big things going on in the little body of hers that I am struggling to meet her needs for,” said Rose.
“Lulu has quite a physical aspect to her ASD traits. At this time, she is non-verbal and we are getting frustration from two areas. One is the actual feelings in her body that can be produced from autistic traits, the other is her frustration of being unable to communicate.”
She said Lulu’s frustration can lead to hitting herself in the head to the point where there are bruises all over her forehead.
“There’s a lot of physicality,” said Rose. “She may only be three, but there is a lot of power in that little body. You worry as a parent. I understand why she is doing it, but where is the line where she is doing it for relief and doing it and going to hurt herself?”
Looking for help
To shine a light on the difficulty she is having, Rose wrote an impassioned letter to Premier Tim Houston and 27 MLAs in the legislature. She wrote about the urgency for children with autistic traits to receive support at an early age, instead of being a number on a wait list.
IWK Health stated that as of Dec. 31, 2025, the waiting list for autism assessment included 774 preschool-age children (before Grade Primary) and 1,033 school-age children (Grade Primary and above).
“We’re waiting for the interventions that research consistently shows can help children like her find their voices and build the skills they need to navigate the world. But the early years of a child’s life do not pause while they sit on waitlists,” said Rose.
“Every day that passes without support is a day of opportunity lost, not because help doesn’t exist but because the system cannot reach her in time.”
Elizabeth Smith-McCrossin, MLA for Cumberland North, plans to table Rose’s letter in the legislature and will give a copy to the minister of health.
Rose said she wakes most mornings in tears, knowing every day that she is losing a piece of her child.
“For families, that difference is not abstract policy. It is the difference between a child receiving help when it can change their future, or watching precious time slip away,” said Rose.
“Before my children are even awake, I am up experiencing my grief so that when they are ready for the day I can give them my all, but that is becoming harder and harder while I come across crack after crack in the system. I feel like I am failing every day because I am one voice of many needing change that comes from higher up.”