Newspaper column: Scale of Autism backlog can’t be underestimated

Every month Jo Cox writes a column for The Press. This month’s column appeared in last week’s edition.

Many local children are having to wait more than two years for an Autism diagnosis. Nationally the average is more than three and a half years.

The scale of the backlog and delays – and the upset and turmoil it causes people – cannot be underestimated.

Since meeting with local families and working with the National Autistic Society I have been lobbying for action and I am delighted that Kirklees’s two clinical commissioning groups (CCGs) have just announced a plan to clear the backlog locally.

But this is a national crisis and a problem that the Government must address. I raised my concerns in a debate this week in Parliament.

Autism is a lifelong developmental disability that affects how a person communicates and relates to other people. It affects people in different ways. Some are able to live a substantially – or even a completely – independent life, while others may need a lifetime of specialist support.

The diagnosis is a critical milestone. It helps individuals take control of their lives and can unlock access to essential support and services. And it can be just as important for parents, friends and loved ones, enabling them to better understand their child, friend or partner.

It is a particular concern that children are having to wait so long. Not only does this this place tremendous strain on their whole family but also means that many children are not receiving the early intervention which could have a big impact in their formative years.

In many cases children are being locked out of the services available to them, support which can be life changing.

We now know the value and importance of early and fast diagnosis – and yet our system continues to fail so many children and adults.

One constituent of mine told me the story of her son – who is very much one of the lucky ones. She wrote to me and she told me about what a blessing his diagnosis of Asperger’s Syndrome had been. It didn’t just provide access to support and services but it helped everyone, including him, understand why he felt and behaved the way he did. He said he wished he had been diagnosed sooner because, in his words, “I always knew I was different, now I know why.”

He is one of the lucky ones because his parents had the ability to pay for a private diagnosis.

The NICE Quality Standard on autism is clear: once referred, people should wait no longer than three months for their first diagnostic appointment. In order for this to happen, both the Government, local authorities and NHS England need to act.

A crisis like this is a decade or more in the making but this Government should be judged on how it now addresses it. First, we need a new requirement on NHS England to collect, publish and monitor data on diagnosis waiting times, including data on how many people are known to their GP to have autism.

Second, NHS England should ensure that standard ‘waiting times’ on mental health reflect the NICE national guidance that no one will wait longer than three months between referral and being seen for diagnosis.

And finally, the Government must share in this commitment, ensuring that NHS England meets the three month target. To help meet this aim – access to an autism diagnosis should be written into the Department of Health’s Mandate to NHS England, which means that they will be held to account on this target and it becomes a priority for them to get right.

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