‘Diagnosis is a critical milestone – it helps individuals take control’

MP Jo Cox, the former Batley and Spen MP who tragically died, spoke about autism in a Parliamentary debate.

“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 sisterin-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.

She added: “This is not just a problem in my constituency, but up and down the country.”