Family frustrated as daughter left waiting for autism diagnosis

The couple hope a potential autism diagnosis for their youngest daughter could lead to extra support when she starts school

A family have shared their frustration about an 18-month wait for their child to receive an autism diagnosis amid a city-wide freeze in assessments.

Beth Madigan and Andrew Thomas, who live in Leeds, hope Lexi, 4, can see a psychologist before she starts school.

Their MP, Labour's Alex Sobel, discovered that all pre-school autism assessments in Leeds had been suspended for six months due to a lack of staff.

West Yorkshire Integrated Care Board said assessment access was a priority.

Speaking to BBC Look North, Mr Thomas said time was running out for Lexi to get the extra support she needed before she was due to start school in September.

"We want it set up so that all the right people and the right channels are there in place at the right time so her education gets off to a good start," he said.

"Otherwise she will fall behind and it's going to get worse."

Mr Thomas explained they had spotted the potential signs of autism in Lexi as her behaviour was significantly different to older sister, Nina.

"Nina could understand very quickly and clearly in certain situations - but Lexi doesn't, and that's reflected in her behaviour," he said.

Ms Madigan hopes Lexi can get a diagnosis so she can get the "support she needs"

Ms Madigan said a diagnosis for Lexi would "be the start of the journey for her to get the support she needs".

"I really want to frame it in a positive way, but at the moment it just feels like we don't have the diagnosis so we can't talk about it. It's a bit unsure," she said.

Mr Sobel, who is the MP for Leeds North West, said: "The explanation of a temporary suspension of pre-school autism assessments due to a shortage of professionals is simply unacceptable.

"Families should not be left waiting indefinitely for essential services that directly impact the wellbeing and development of their children."

A spokesperson for the region's integrated care board said "work is under way" to provide further support services.

'Plans in place'

In a written answer to a question by Mr Sobel in April highlighting the situation in Leeds, Maria Caulfield said: "The West Yorkshire Integrated Care Board advises that pre-school autism assessments in Leeds were temporarily stopped due to a shortage of professionals.

"The service remains suspended as it needs one full-time equivalent clinical psychologist."

Ms Caulfield, parliamentary under secretary of state at the Department of Health and Social Care, added: "The post has recently been recruited, and plans are in place for the service to reopen by the end of June."

The government said it was "taking action to reduce assessment delays", adding it understood the importance of children having a "timely diagnosis of autism".

"We made £4.2m available last year to improve services for autistic children and young people, including autism assessment services, and NHS England has published a national framework to help speed up autism assessments," a government spokesperson said.

It had launched a £13m partnership to improve specialist support for neurodiverse children in primary schools, they added.

What is autism?

Autism spectrum disorder (ASD) - its medical name - is the name for a range of conditions which affect how a person communicates and interacts with the world around them, as well as their interests and behaviour.

It is not a disease or an illness but a condition somebody is born with.

The NHS says if you or your child have signs of autism, the next step is to talk to someone about it - including a GP, health visitor, a special educational needs co-ordinator at school - and they will be able to refer on for assessment.

An assessment is done by autism specialists. It is the only way to find out if you or your child are autistic.

(Source: NHS)