'I'm screaming into a void' as the parent of an autistic child, says Cornwall councillor

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 Kate Ewert said it was like "screaming into a void", while her Conservative colleague James Mustoe added that trying to navigate the system was like "banging your head against a brick wall".

They both questioned how other parents of neurodiverse children cope when they, as councillors, know what help is available yet still struggle themselves. Their comments came as parents of SEN (special educational needs) children prepare to stage a demonstration outside Lys Kernow / County Hall in Truro on Tuesday (January 21) due to concerns about a lack of support in education.

The councillors were reduced to tears during a discussion about the council's Celebrating Neurodiversity Strategy at a children and families scrutiny committee meeting on Wednesday (January 15). The strategy is 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.

Over 2,000 professionals have 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 to understand children with neurodivergence.

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While they stressed they know council officers were doing all they can, councillors Mustoe and Ewert - who both have autistic children - were critical of the system.

Cllr Mustoe, who has chaired the children's committee since 2021, said: "My experience is that you have to actually get schools - without naming any in particular - to not just say that they're doing these things but actually show that they're doing it every day ... because it's not happening."

Kate Evan-Hughes, the council's director for education and community health, replied: "Without naming or shaming, when we are aware that there are schools, particularly if they are part of a multi-academy trust, that are perhaps not living the inclusion message then we are in close contact with the regional director to look at how we influence change. The biggest influencer of change is the positive messages from other schools.

"The more we can work with schools who say 'actually we've had a really good inspection outcome and look we are very inclusive and this is how we do it', that's how we change hearts and minds. We don't change hearts and minds by rattling cages because it just makes people defensive."

Cllr Ewert then interjected to say that despite everything that was being done to help families and professionals, from her experience, it wasn't working. "Gosh, I could say so much about this having an autistic child who's in Year 6. I would completely agree with Cllr Mustoe. The school my child attends - they've done all the training, they've done all the outreach, they've ticked all the boxes but they cannot meet his needs, or any other child with neurodiverse needs, because they're not putting any of it into practice.

"I think that is a reality everywhere. It makes me want to cry and I'll probably start James off. It's heartbreaking when you've got a child with neurodiversity who is not being listened to, who is not being heard, day-in, day-out, and you do not feel confident in any of the schools around you."

Her voice cracking, Cllr Ewert added: "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. Not a single one. 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."

Getting tearful, Cllr Ewert addressed officers: "I was so excited when this came through committee last year, but it's not helping the children we need to help, and I'm really sorry to say that as I can see how committed you all are to it, but when you're your child's advocate it's not helping."

Cllr Mustoe, who was also visibly emotional during the meeting, said the Celebrating Neurodiversity Strategy had been launched relatively recently and it needed to be fully embedded, but he said he completely identified with everything his fellow councillor said. He suggested that officers had a meeting with him and Cllr Ewert to discuss the reality of being SEN parents.

Fighting back tears, he said: "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. It's frustrating, particularly when we have our roles as councillors and if we can't do it for our own children knowing what we know, then how difficult must it be for Joe Public on the street?

"It is good to see there are positive steps being taken but we have to understand what it looks like on the coalface for us and other families."

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. "We need to know which schools aren't hearing the messages." The councillors were told they didn't need to apologise for advocating for their children.

Following the meeting, Cllr Mustoe told us: "I've always wanted to highlight the issues that SEN children - and families of SEN children - face in terms of the support that they're getting. There is more that needs to be done both in terms of highlighting that support is available but in numerous other areas as well.

"It's not something that can be fixed that quickly as demand keeps escalating. It's not a case of the council doing something wrong, it just feels like you're going around in a circle - you have to speak to the school, you have to speak to the NHS, you have to speak to the council. Why can't they be more joined up? You get frustrated about the waiting lists."

He added: "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."

Also speaking after the meeting, Cllr Ewert said: "The point that James and I have been making consistently for the last three and a half years is we are in the system, we understand how the system works, and if we can't navigate it what hope has anyone else got?

"It's no slight against the officers and I know that they're really passionate about it, really care and they're doing everything they can, but actually for people on the coalface it's not working. Kids are not getting the support they need."