Lincolnshire sees sharp rise in autism service demand amid growing awareness

There has been a significant increase in demand for autism services in Lincolnshire due to heightened awareness and publicity around neurodiversity.

During a meeting of the Lincolnshire County Council’s Adults and Community Wellbeing Scrutiny Committee, officials discussed the year-long waitlists for autism referrals and the new five-year All Age Autism Strategy, with a primary focus to create “autism-friendly” environments and opportunities for people on the spectrum to have their say.

With Lincolnshire’s population being 768,400 in the 2021 Census, and research suggesting that anywhere between 0.6% and 1.7% of the general population are autistic, it is estimated that some 13,000 people in the county would have autism.

That is a number that is expected only to rise, as awareness continues to blossom. NHS Lincolnshire Integrated Care Board states in the report that adult referrals for autism diagnosis have increased 158% across the last three years.

It is also the case with young people. 9.1% of primary school children in Lincolnshire have special education needs that identify with autism as a ‘key need’, which is 0.9% higher than the national average.

According to a national study from 2021, the number of autism diagnoses between 1998 and 2018 jumped 787% in the United Kingdom, and the Nuffield Trust warned earlier this year that the NHS could not meet the demand for ADHD and autism referrals, urging a “radical rethink.”

Coun Karen Lee (Labour) gave reference to her grandson being on the autistic spectrum, and said that “awareness going up is the reason referrals are going up,” a thought which was echoed by two other councillors on the committee during the debate period.

It was noted that demand for referrals often soars when a celebrity or prominent social media figure opens up about their own experiences with neurodiversity.

An example used was BBC Radio 2 DJ Zoe Ball, who revealed her ADHD diagnosis at the end of 2023, prompting Lincolnshire referrals to “spike” among women of a similar age demographic to the broadcaster.

Another major progression point has been an increase in visibility and representation among all sectors of employment.

With the typical referral route usually being through education sectors, Cath Keay of the NHS Lincolnshire Integrated Care Board said an increase in teachers with autism diagnoses has also allowed for more potential cases to be seen to quicker than before.

“As awareness is greater, less people are being missed,” she said, before calling for a “neurodevelopmental lens” within the wider NHS network, which would help integrate neurodiversity and relieve pressures on individual sectors of health and social care.

That is not to say the challenges get easier from here, given the width of the autistic spectrum and the many forms it can take as a condition.

Coun Mark Whittington (Conservative) asked when a “total understanding” of the levels of demand will be reached, and the response was that there “will never be complete accuracy” due to the “layers of complexity.”

He referenced eras previous to the 21st century, where children with potential SEND issues were simply “badged as naughty” rather than offered support for their individual cases.

Coun Whittington asked: “We’re on an upward trajectory of demand, but will we ever know what the sheer level of demand is for these services?”

A key priority of the strategy, however, is focused more on creating “autism-friendly” environments and ensuring it is looked at within the mental health and social care sectors, rather than learning difficulties.

This rings true in a number of sectors across the country, whether it be supermarkets providing sensory-friendly experiences for shoppers, or the county council’s multi-million pound spending on special school improvements across Lincolnshire.

Creating these environments would also help in the workforce, the committee was told, with Census data suggesting that as many as 6,000 autistic people in Lincolnshire are likely to be unemployed.

Ultimately, though, the NHS Lincolnshire Integrated Care Board underlined the importance of not treating all cases of autism the same.

Cath Keay told the committee: “When you’ve met one person with autism, you’ve met one person with autism.”