NAS chief tells SNJ why it’s time to end the autism diagnosis crisis

Last year, the National Autistic Society launched a campaign aimed at ending the often seemingly endless wait for a diagnosis for an autism spectrum disorder. It's a problem faced by both children and adults in the UK.

We felt that it was important to keep this campaign at the front of people's minds into 2016 and to help this, Mark Lever, the Chief Executive of the NAS has written for Special Needs Jungle about the campaign and why it's time to end the autism diagnosis crisis.

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Time to End the Autism Diagnosis Crisis By Mark Lever, Chief Executive of The NAS

Last month, I met a 10-year-old girl called Becky who had just been diagnosed with autism - after a six year wait. Unfortunately, her case is not unusual - she is just one of many people I’ve met during my eight years at The National Autistic Society (NAS) who’ve waited years for a diagnosis, or are still waiting.

No-one should ever have to wait this long, just to find out who they are and to have a chance of unlocking essential support and services. Without a diagnosis, people on the spectrum are often left without support for years and fall into crisis, developing mental health problems such as anxiety and depression. This has a knock on impact on families, who have to deal with the additional, sometimes overwhelming, strain of looking after their loved ones without help and, often, a full understanding of their needs.

In August, we launched a campaign to draw the Government’s and NHS England’s attention to this crisis and to call on them to take urgent action. National guidelines state clearly that people should only wait three months between being referred for an autism assessment and their first appointment. But a recent study shows that, on average, children are waiting more than three-and-a-half years for a diagnosis after first seeking professional help. This is too long and it’s pushing families into crisis.

An early diagnosis wouldn’t just help hundreds of thousands of people on the autism spectrum and their families, it also makes financial sense as it would help the NHS save money by reducing the number of GP appointments, emergency admissions and use of costly mental health services. Indeed, the National Audit Office calculated that identifying and supporting 8% of adults with high-functioning autism and Asperger syndrome would save the public purse £67 million per year - that's a potential saving of £335 million by 2020. That's why we're calling on our campaigners to build pressure by emailing their MP and telling them why this issue is important.

Time for action

Last month, staff from our charity gathered outside the Houses of Parliament with Becky’s family and half a dozen others who’ve also faced long delays getting a diagnosis, aiming to compel the Government to take action.

Group of NAS campaigners
Families call for action to end the diagnosis crisis

Becky's story. Becky and her parents Vanessa and Richard, West Sussex

Becky and he parents
Vanessa: "The whole process was extremely stressful... I don't want anyone else to have to go through this."

Becky’s parents, Vanessa and Richard from West Sussex, first sought professional help when their daughter was just four years old. They spent the next six years going to professionals but Becky’s autism was never picked up, something her mum attributed to a lack of understanding of the different ways autism can present in girls.

They eventually decided they’d have to go private, outside the NHS, to get a diagnosis and the help Becky needed. Vanessa told me she feels let down by the NHS and that the delays prevented her from giving Becky the understanding and support she so desperately needs.

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Sam's story

sam's parents
Melanie: "It makes me sad to think how different our lives could have been. Without an understanding of our son’s needs, we just didn't know how to help him cope with the world.”

It took nine years for Sam*, 20, to be diagnosed, from the point his parents Mel and Richard first sought professional help. Like, Becky’s parents, Mel and Richard are frustrated with professionals who repeatedly missed the signs of autism. They told me how, without a diagnosis, they just didn’t know how to support Sam or to access the professional support he needed which contributed to the serious mental health problems he faced as a teenager.

However, their lives have improved since the diagnosis and Sam’s now started university. He’ll always face social and sensory difficulties but, with an understanding of his needs and his family around him, his future is looking bright.

What next?

There has been some progress since August when we launched our Autism Diagnosis Crisis campaign with a public letter to the Health Secretary, Jeremy Hunt, and NHS England Chief Executive, Simon Stevens, signed by almost 12,000 people. They have responded, recognising the seriousness of the issue and making tentative but welcome steps to address it.

NHS England has promised to start reporting each month on the number of people with a diagnosis of autism using mental health and learning disability services across England. They are also set to meet with service commissioners in some areas where waiting times are particularly long, with a view to identifying common barriers to timely assessments and improved services. The Government has also included autism in its consultation on the NHS' priorities in England.

But they have fallen short by not committing to start monitoring autism diagnosis waiting times across England. Without this, it's very difficult to effectively measure performance, work out what's causing long waits in different areas and ultimately improve services.

What you can do

The Government and NHS England need to do more if we’re going to end the autism diagnosis crisis and stop future generations of autistic people having to go through the years of uncertainty and pain faced by Becky, Sam and their families.

We’re going to keep fighting on their behalf but need your help – please ask your MP to tell the Government and NHS England to put their words into action and prioritise reducing autism diagnosis waiting times here.

Mark Lever, Chief Executive, National Autistic Society

* Mel’s son’s name has been changed to maintain his anonymity.

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Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two young adults with autism. Tania is a member of the Whole School SEND Expert Reference Group for SEND Leadership, the Ofsted SEND Inspections Stakeholders Group, and sits on the Advisory Board of the Royal Holloway, University of London Centre of Gene and Cell Therapy.
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
Tania Tirraoro
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