Neurodivergent children and their parents in Kirklees are raising their voices. As they struggle to receive timely diagnoses and appropriate support, they call for greater advocacy. Rosa Forrest is Parent Support and Neurodevelopmental Lead at Northorpe Hall Child & Family Trust. She showcases the fight in every family’s corner and communicates the desperate need for a shift to happen.
Forrest herself encountered major challenges in securing diagnoses for her own two children, now 17 and 19. The signs of autism she said, could be hidden by their deafness. This dual challenge makes diagnosing autism more difficult, often leading parents to feel a deep sense of frustration and helplessness.
“I had a massive burnout two years ago, I had to leave my job,” Forrest shared. Her story is representative of the narrative shared by many parents across the country who feel alone, as their cries are left unanswered. “We get a lot of parents in desperation sending us an email or giving us a call because they don’t know where to turn,” she added.
In Leeds-based Louise Moller one mother discusses the impact on her son Noah. His neurodiversity was identified when he was five years old. The support she expected once diagnosed was a disappointing let down. They provided one or two specialist sessions following diagnosis and issued some leaflets but were culled from that service. It makes you feel unwanted,” Moller said. The absence of ongoing support made her feel alone and inundated.
Soon, Kerri-Anne Ball of Halifax would articulate her family’s frustrations with the lack of available support. “At the end of the meeting, my husband and I asked what support would be available now that we’ve got a diagnosis of autism,” she said. The response was disheartening. We were promised our case file would be permanently closed. We got one flyer in the mail for autism, and that’s where our help stopped.” Ball described that period as a “really difficult time with a lot of uncertainty.”
Miriam, a 45-year-old mother and homemaker. She has been on the frontline of the fight, as a parent, to get her two out of three neurodivergent and deaf children the diagnoses they require. Her story is the story of countless parents, moving through a complicated maze of medical and educational systems.
The stakes couldn’t be higher, as one in seven children are estimated to be neurodivergent. Getting diagnosed is key, according to experts. The test, which holds life-changing predictive power, is not the problem—families are just never given the insightful support that should come with it.
Joey Nettleton-Burrows, an advocate and service provider for neurodivergent individuals and families, emphasized the need for a holistic approach to advocacy. “Most autistic people and families of autistic children receive little to no support before or after diagnosis and are ultimately left to fend for themselves,” Nettleton-Burrows noted. He called for urgent governmental action: “The government needs to provide urgent dedicated funding for autism diagnosis services that guarantees both pre- and post-diagnosis support.”
This demand for more robust resources and support is a refrain from countless parents who found themselves left in the dark after their child received a diagnosis. Moller highlighted this sentiment when she said, “It’s not only the children that may be neurodivergent; there needs to be that support for the parents, too.”
