Two-Year Waits for Autism Diagnosis Pushing Families to Breaking Point

Bringing in waiting times for autism assessments would be a huge step forward for the 1 in 100 people on the autism spectrum in the UK. And it is achievable, even in an age of austerity. In fact, it is all the more necessary as the NHS tries to make savings.
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Today, thousands of children and adults are waiting for an assessment to find out if they are on the autism spectrum. None of us enjoy waiting for anything, but these waits are causing long-term damage to people's mental health and to NHS finances.

It is hard to explain to someone who isn't autistic how difficult everyday life without support can be. People on the autism spectrum often struggle with things that others find easy or even enjoyable. A small change in someone's schedule, like a bus turning up late, can feel like the end of the world to someone on the autism spectrum. Going to a new place can feel terrifying to someone who's autistic and struggles to make sense of their everyday surroundings.

What is even worse is to feel like this and not understand why. Some adults who don't know they're autistic will blame themselves if they have been unable to hold down jobs or form relationships. Some teenagers and adults become suicidal as a result.

Similarly, many parents of undiagnosed autistic children have to watch as their children 'fall behind' their peers but they don't understand why. They too can become depressed, confused and anxious as they wonder what they can do to help their relatives. Some parents will have family members who think that they just aren't parenting their child properly - and tell them so, adding to their anxiety.

On average, adults receive a diagnosis around five years after their concerns first emerge and two years after seeking professional help, and children 3.5 years from asking for help, for example from their GP, and starting the diagnostic process. Yet these people and their years of waiting are invisible to the NHS. Government and NHS England could tell every local area in England to keep a record of how long people wait. There are clear guidelines for every NHS area on how to track waiting times for hip operations, gynaecological appointments and plastic surgery. But not for autism diagnostic assessments.

That's why we at the National Autistic Society are asking for something very simple. We want autism diagnosis waiting times to be measured and published in the same way that the NHS measures and publishes all this other information.

This is not a lot to ask - and in fact it is completely in line with the Secretary of State's admirable drive to increase transparency about the NHS and open up data. Yet there are enormous benefits to making this very small change. First, making sure that every area in the country measures this waiting time would, in the long-term, help to reduce it, as has already happened with other waiting time measures. So in years to come fewer people would experience the pain and trauma of that two year wait.

But doing this would also help reduce the pressures on the NHS budget, with which we are all too familiar. When people develop mental health problems as a result of this agonising wait, the NHS has to step in, whether with psychological therapy, medication or inpatient treatment for people who are severely ill or suicidal. A bed on a mental health ward costs tens of thousands of pounds a year. A diagnostic assessment costs a fraction of that. It's not just us that think this would help the NHS - the National Institute of Health and Care Excellence (NICE) has also said that investing in autism services will help reduce the cost of mental health crisis services.

Bringing in waiting times for autism assessments would be a huge step forward for the 1 in 100 people on the autism spectrum in the UK. And it is achievable, even in an age of austerity. In fact, it is all the more necessary as the NHS tries to make savings. We hope that Government will listen to our call to put this simple measure into the NHS and finally bring these years of waiting to an end.