Family frustrated when daughter left awaiting autism diagnosis

A family has shared their frustration about an 18-month wait for their child to receive an autism diagnosis amid a citywide freeze on assessments.

Beth Madigan and Andrew Thomas, who live in Leeds, hope 4-year-old Lexi 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 staff shortages.

West Yorkshire Integrated Care Board said access to assessment is 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 started school in September.

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

“Otherwise, it will lag behind and get worse.”

Mr Thomas explained that they noticed potential signs of autism in Lexi because her behavior was markedly different from that of older sister Nina.

“Nina could understand very quickly and clearly in certain situations – but Lexi doesn’t, and that’s reflected in her behavior,” he said.

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 right now it feels like we don’t have the diagnosis so we can’t talk about it. She’s a little insecure,” she said.

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

“Families should not be left waiting indefinitely for essential services that have a direct impact on the well-being and development of their children.”

A spokesman for the region’s integrated care board said “work is ongoing” to provide additional support services.

In a written response to a question from Mr Sobel in April, outlining the situation in Leeds, Maria Caulfield said: “West Yorkshire Integrated Care Council advises that preschool autism assessments in Leeds have been temporarily stopped due to a lack of professionals.

“The service remains suspended as it requires a full-time equivalent clinical psychologist.”

Ms Caulfield, Parliamentary Under-Secretary of State at the Department of Health and Social Care, added: “The post has been recently recruited and there are plans for the service to reopen by the end of June.”

The government said it was “taking steps to reduce assessment delays”, adding that it understood the importance of children having a “timely diagnosis of autism”.

“We made £4.2 million available last year to improve services for children and young people with autism, including autism assessment services, and NHS England published a national framework to help speed up autism assessments,” he a government spokesman said.

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

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

It is not a disease or a disease, but a condition that one is born with.

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

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