TWO Cornwall councillors have spoken emotionally about how difficult it is being the parent of a child with autism when they are not getting the help they need.

Labour councillor for Rame Peninsula and St Germans, Kate Ewert said it was like “screaming into a void”, while her Conservative colleague Cllr James Mustoe for Mevagissey and St Austell Bay added that trying to navigate the system was like “banging your head against a brick wall”.

Their comments came during the council’s children and families scrutiny committee meeting on Wednesday, January 15 in a discussion on the council’s Celebrating Neurodiversity Strategy aimed at improving the development and experiences of children and young people with conditions such as autism and attention deficit hyperactivity disorder (ADHD).

The meeting heard that in its first year, work has mostly focused on a new Neurodevelopmental (ND) Profiling Tool and the introduction of an ND Hub, which council officers said has improved access to advice, support and guidance for professionals, parents and residents.

They reported that more than 2,000 professionals had been trained to complete the ND Profiling Tool including school staff, school nurses, health visitors, family workers, speech and language therapists, and council officers supporting schools and Early Years settings. While they stressed they know council officers were doing all they can, the councillors, both parents to autistic children – were critical of the system.

An emotional Cllr Ewert said that despite everything that was being done to help, from her experience, it wasn’t working. She said: “I’ve asked the SENCO (special educational needs coordinator) in our school and other schools in our area if they know about this tool – not a single one of them have heard about it. They all think it sounds brilliant but they’re not hearing about it.

“So while I applaud this, it is not getting out there – it is not helping the children we want to help. You feel, as a parent of a neurodiverse child, that you are screaming into a void.”

The meeting heard that those involved need to know about the areas where it’s not getting through, although an officer said the profiling tool information had been shared with all SENCOs, head teachers and multi-academy trust leaders.

Councillor Mustoe added that the Celebrating Neurodiversity Strategy had been launched relatively recently and it needed to be fully embedded, but said he identified completely with everything his fellow councillor was saying. “You have to be your child’s champion and you do feel like you’re banging your head against a brick wall, screaming and shouting, and trying to be professional at the same time.” He added after the meeting: “It’s not a problem for Cornwall Council in isolation, it’s a problem for health colleagues and schools. They all have to work together and I think the council is doing its best in trying to make progress.”

Parents of SEN (special educational needs) children are preparing to stage a demonstration outside County Hall in Truro on Tuesday, January 21 due to concerns about a lack of support in education.