ByKit Taylor

You can view the original article here: https://www.bbc.co.uk/news/articles/crl2896ln5do

Parents of neurodivergent children have said a lack of support had left them feeling “isolated” and “uncertain” both before and after their diagnosis.

It is estimated that one in seven children are neurodivergent, external, which is an umbrella term for conditions like autism, ADHD, and dyslexia.

But families in West Yorkshire have said they had been left to fight battles for their children on their own and without the help they really needed.

Louise Moller, from Leeds, whose son, Noah, now 12, was diagnosed when he was five years old, said: “They gave us a couple of sessions after the diagnosis, then some leaflets, then we were dropped from that service. It makes you feel unwanted.”

“I ended up in a situation where I isolated myself from society,” she said.

Ms Moller, who is also neurodivergent, said the pressure of coping with the situation had really had an impact on her.

“I had a massive burnout two years ago, I had to leave my job,” she explained.

“It’s not only the children that may be neurodivergent, there needs to be that support for the parents, too.”

To get diagnosis for a child, external, parents are asked to look for signs of the conditions in their behaviour and, for children under five, to make an appointment with a GP or health visitor.

If a professional recognises that a child may have autism or ADHD, they are also expected to make a referral for an assessment.

According to NHS figures, as of June this year there were more than 236,000 people in England, external, including children, waiting for an autism assessment.

Meanwhile, figures from March this year showed that up to 549,000 people, external were waiting for an ADHD assessment, with 20,000 people being referred in that month alone.

Following a diagnosis, NHS guidance, external states that a child should also be offered another appointment a few weeks or months later, to talk to someone from the assessment team.

However, despite this, Kerri-Anne Ball, 37, from Halifax, said she did not get the support she felt she needed.

She explained that while she started the process for an autism diagnosis for her son, Oliver, when he was two years old, it was not until he was four that he had his official diagnosis meeting.

“At the end of the meeting, me and my husband asked what support would be available now that we’ve got a diagnosis of autism,” she said.

“We were told our case file would be closed. We received a flyer through the post about autism, and that is where our support ended.

“It was a really difficult time with a lot of uncertainty.”

Miriam, 45, and two of her three children are all neurodivergent and deaf.

She said they had struggled to get a diagnosis for her 17 and 19- year-olds, because a lot of the indicators of autism could be covered up by deafness.

She said she “just didn’t have the energy” to fight for the diagnoses.

“My concentration is going into keeping my kids going day to day,” she said.

“I remember looking at my screen and thinking, I just can’t fight that battle.”

The most difficult part for her was “the feeling of hopelessness”, she added.

Now, more local charities are tailoring their support to help the whole family dealing with neurodiversity-related challenges.

Rosa Forrest, parent support and neurodevelopmental lead at Northorpe Hall Child & Family Trust, based in Kirklees, said: “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.”

Ms Forrest said the charity, which supports young people and their families with autism, ADHD and related issues, was seeing “more and more referrals” each year.

“A lot more young people need a lot more help,” she said.

In a new project, called Me + My Normal, the charity has invited parents to be part of the sessions alongside their children.

“For some parents, it was the first time they’d even met another parent of a child who had autism or ADHD,” Ms Forrest said.

“I think a lot more parents are isolated because they don’t feel heard. Sometimes all they want is somebody to listen. It’s just a case of being present with them and saying, I hear you.”

‘Fend for themselves’

Joey Nettleton-Burrows, from the National Autistic Society, said: “A diagnosis can provide important insights that are life-changing, and sometimes even lifesaving.

“However, 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.”

“The government needs to provide urgent dedicated funding for autism diagnosis services that guarantees both pre- and post-diagnosis support.”

A spokesperson for the Department of Health and Social Care said the government had recognised that demand for assessments had grown significantly, and that it was “working closely” with NHS England to reduce waiting times for those services.

They said that the government’s 10-year plan “sets out how the NHS will offer support earlier to children with Special Educational Needs, including autistic children, to reduce pressure and get them the right support quicker”.

The spokesperson said the government was introducing Neighbourhood Health Services in communities, which would “work in partnership with family hubs, schools, nurseries and colleges to offer timely support to children, young people and their families”.

By 2028, the department would have overhauled the “outdated” NHS app and “parents will be able to manage their children’s healthcare through My Children, acting as a front door to the health service”, they added.

Mid Yorkshire Hospitals NHS Trust and Leeds and York Partnership NHS Foundation Trust, which provide mental health and learning disability services, were both approached for comment but no-one was available.