AUTISM is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It is a spectrum condition, which affects different people in different ways.
Some people with autism are able to live a substantially – or even a completely – independent life, while others may need a lifetime of specialist, complex support.
Diagnosis is a critical milestone. It helps individuals take control of their lives and can unlock essential support and services. And diagnosis can be just as important for their parents, friends and loved ones, enabling them to better understand their child, friend or partner.
However, tragically many thousands of people up and down the country are waiting far too long for a diagnosis. For children, on average the current wait is now over three-and-a-half years. And many adults receive a diagnosis around five years after their concerns first emerge, and often two years after seeking professional help.
It is of particular concern that children are having to wait so long for a diagnosis. Not only does this place tremendous strain on their whole family, but it also means that many children are not receiving the early intervention which could have a big impact in their formative years.
Take, for example, Snowflakes – a nursery for children with an autism diagnosis or awaiting an assessment, run by my sister-in-law, Stacia.
One of their children was lucky and got an early diagnosis aged three. He joined Snowflakes and the team worked with him and his family for two years. The dedicated staff managed to help him in into a mainstream primary school with support. And he is still in that mainstream school and is thriving.
Another child came to Snowflakes because her mainstream nursery were unable to cope with her challenging behaviour. She is on an 18-month waiting list for a diagnosis, but is due to start primary school in just six months time. She is making good progress within this specialised setting and is now a role model for the other children.
But her parents want her to move onto a primary autism resource, but to get a place, she needs a diagnosis. Without a diagnosis she will be forced to accept a place in a mainstream primary school which will not be able to meet her needs.
With a diagnosis, she would go to a primary autism resource using the specialised teaching methods she knows and trusts and would be able to continue her education and in turn increase her life chances.
Many parents tell the National Autistic Society that delays in getting diagnoses have also led to the development of serious mental health problems, both for the individual and for the family. You only have to meet a handful of parents to realise the unbelievable pressures these waiting times put them under.
I want to tell you the story of a young man from Batley. This young man is one of the lucky ones – he now has his diagnosis. His mum wrote to me and she told me about what a blessing his diagnosis of Asperger Syndrome had been.
It didn’t just provide access to support and services but it helped everyone, including him, to 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.”
And I want to tell you why he is one of the lucky ones. It’s because his parents had the ability to pay for a private diagnosis. They raised £2,500 to fast track the process, but they should not have had to. What about the great many of my constituents who do not have the means to afford a private diagnosis?
This is not just a problem in my constituency, but up and down the country.
Data from Public Health England shows huge regional variation in adult services, with waiting times between referral and first appointment – not even the whole diagnosis journey - in the South West reaching 95 weeks. And in my own region of Yorkshire and the Humber, 84 weeks.
The NICE Quality Standard on autism is clear: once referred, people should wait no longer than three months before having their first diagnostic appointment. The Government, local authorities and NHS England need to act.
Here is a crisis now so acute that some desperate parents are paying for help that by right they should be able to access on the NHS.
Jo Cox is the Labour MP for Batley & Spen. She spoke in a Parliamentary debate on autism. This is an edited version.