Should learning disabilities be separated from autism in healthcare policy?

For some time, autism and learning disabilities have been grouped in healthcare policies due to their high co-occurrence rate, despite being entirely different from one another.

The overlap between the two is relatively high. For example, approximately 1.5 million people in the UK have a learning disability, and of these, about three in 10 will also have an autism diagnosis. Official figures indicate that 700,000 individuals in the UK are diagnosed with autism, and one-third will also have a learning disability.

Yet autism is a neurodevelopmental disorder that primarily impacts social communication and interaction. Whereas, a learning disability is a lifelong condition characterised by a reduced ability to understand new or complex information, learn new skills, and cope independently. People with learning disabilities are also more likely to have complex health comorbidities.

Many campaigners are worried that, with autism diagnoses on the rise, this overlap between the two can create confusion in healthcare settings and lead to more significant barriers to healthcare and inequalities for both groups.

Why is autism on the rise?

In the past decade, the autistic community has made significant strides in challenging traditional narratives about autism by sharing their personal experiences and advocating for more inclusive practices in society and research.

This advocacy effort, combined with increased public awareness, has led to more people being diagnosed with autism, with some studies indicating an increase of over 175% in the last ten years.

In the US, the latest figures indicate that one in 31 children is diagnosed with autism before the age of eight.

The rise can partly be attributed to improved screening tools and expanded diagnostic criteria from the DSM (Diagnostic and Statistical Manual of Mental Disorders), which have evolved to include individuals with milder symptoms who may have previously been overlooked.

Both autistic individuals and those with a learning disability may have high support needs, indicating they require full-time care and assistance. In contrast, others may need support with specific day-to-day activities. Autistic people, however, are more likely to live fully independent lives when they do not have an additional learning disability.

As the neurodiversity movement grows, it presents a new dilemma for health and social care professionals on personalising care needs for these two groups. There are concerns that those without a learning disability will overshadow the voices of those with learning disabilities, particularly those with severe or profound learning disabilities.

Shifting the balance of power to people with learning disabilities

Jim Blair, Consultant Nurse Learning Disabilities, has long advocated for shifting the balance of power back into the hands of people with learning disabilities. He believes that one of the first steps would be to differentiate between people with learning disabilities who have autism and autistic people without a learning disability.

Chairing our recent healthcare conference, he said: “One of the things I think is important is that there is a significant difference between having a learning disability and being autistic without a learning disability. They should not be configured as they are currently because that causes harm to both groups. Autistic people should be recognised as having their own specific needs.”

There should perhaps be more focus on people with a dual diagnosis. According to Autistica, although both autistic people and people with a learning disability experience barriers to healthcare, those who are autistic with learning disabilities face compounded difficulties, often experiencing more severe barriers.

One study reviewed existing research on this topic and identified several key barriers. These included communication differences, lack of understanding among healthcare professionals, sensory sensitivities, anxiety, and challenges in navigating healthcare systems.

Autistica is now calling for more research to understand more about learning disabilities and autism and how they interact. This would allow for personalised approaches that suit people’s specific needs.

Danny French, who is autistic and has a mild learning disability, works as a Peer Support Worker at Northeast London Foundation Trust (NELFT). He believes that both demographics (individuals with learning disabilities and autism, and autistic people without a learning disability) have different healthcare and life experiences. They are also distinct groups with different options and opinions.

He adds: “I think mixing the cohorts risks getting a mixed view that is lumped together. If you get a view of one group of those with learning disabilities and then those with autism, you get two different views. Then, if you so wish, you can compare those views and see if they match up. You can then find where those same views overlap.”

Gary Bourlet, self-advocate and Membership and Engagement Lead at Learning Disability England, agrees and said that the main thing is to include all experiences and make sure there is a space for everyone to be heard and included in policy.

“Some people are more likely not to get heard, like people who don’t use words or people from minority ethnic communities – so including them should be the priority. Making policy based on labels can risk excluding some people,” he added.

Evolving role of learning disability nurses

In December, the Royal College of Nursing (RCN) called on the UK government to invest in and reimagine the learning disability nursing specialty, as course acceptances and staff numbers are shown to be falling at an alarming rate.

The RCN said that the number of acceptances onto learning disability courses in England has decreased 36% in the last eight years. In addition, the number of learning disability nurses employed in the NHS in England fell by nearly half under the previous government between May 2010 and July 2024.

Worrying news as, according to Mencap, having access to a learning disability nurse can be a matter of life and death for people with a learning disability, as a “shocking” 42% of deaths among people with a learning disability in 2022 were avoidable, mainly because of difficulties accessing care and treatment.

The concerning drop in numbers was also flagged in Lord Darzi’s report into the NHS in England, which said that there is a need to investigate this further.

In recent years, however, there has been a shift for learning disability nurses to work in various settings where they do not solely support individuals with learning disabilities, such as autism services.

Jim Blair says he would like to see the role of the learning disability nurse return to focusing solely on learning disability, with or without autism, and the “and/or autism” aspect removed from NHS policy, as it creates confusion.

He said: “Diluting the role of a learning disability nurse to include autism could mean that people with learning disabilities are frequently pushed further to the back. It could be one of the statistical factors contributing to the ever-increasing early death rates among this population. In my experience, that is part of the problem.”

Scott Watkin, Head of Engagement at SeeAbility, who has learning disabilities and sight loss, shares this same view and said that the healthcare needs of people with learning disabilities and autistic people must be kept separate.

He added: “There are many reasons for this. The underlying healthcare needs and health risks for people with learning disabilities can be very different from those of autistic people. Whilst both groups have underlying health conditions, the biggest gaps in life expectancy are amongst people with learning disabilities.

“Rather than labelling these two distinct groups together unnecessarily, more personalised support is needed to reduce the health inequalities that people with learning disabilities and autistic people face.”

Alison Bloomer

Alison Bloomer is Editor of Learning Disability Today. She has over 25 years of experience writing for medical journals and trade publications. Subjects include healthcare, pharmaceuticals, disability, insurance, stock market and emerging technologies. She is also a mother to a gorgeous 13-year-old boy who has a learning disability.

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