Last week, we shared new research revealing that children and adults in some areas of England are facing shocking waits of more than two years to start their autism assessment and over three years for a final diagnosis. 

The findings, which were also covered by BBC News, highlight the scale of the crisis and the alarming variation in waiting times across the country. It's completely unacceptable for autistic people and families to be waiting many months, even years, for a diagnosis - just because of where they live.

This should act as a wake-up call for the Government and local areas. They must act and develop new or improved services. 

The human impact

The findings are shocking in themselves but they don’t show the human impact. Waiting a long time for diagnosis can be traumatic for autistic people and their families, who are already under great strain trying to hold things together without the right support. They are desperate for help and, in many cases, close to breaking point.  Delays in diagnosis can hold back children in school, harm their mental health, or make it harder for autistic adults to find a job. Getting a diagnosis as quickly as possible matters.  Every person’s experience of waiting is different and we wanted to share this story, following Sarah and Edward’s last week:

Sarah and Isobelle’s story (photo above)

Sarah’s daughter Isobelle is 12 and was referred for an autism assessment in October 2017. But it’s now nine months later and she’s still waiting. And she’s been told the waiting list is around four years. Sarah knows from other families how hard it is to get the right support without a diagnosis and is worried about how her daughter will cope if she doesn’t have this when she starts her GCSEs. 
 
Sarah said: “My daughter is a quiet, bright and wonderful young girl. She’s always been different and this became clearer at primary school, where she started to struggle. This is when we first asked for help but it was hard to get our voices heard. Like many autistic girls, Isobelle masks her difficulties, particularly at school, and no-one thought of autism until she was 10. 
 
“At that point Isobelle started identifying as autistic and this has brought her huge relief and helped us all understand her better and start putting in place some strategies. Her school has been brilliant and give her as much 1-1 support as they can which is helping her to get by. But we know that in reality we need a formal diagnosis to get the specialist support she desperately needs. 
 
“We were referred for an autism assessment in October 2017 but the waiting list is four years! This means my daughter will have to go through her GCSEs without the right support in place. It’s extremely frustrating and I really worry how she’ll cope.
 
“The long battle for help has been very tiring and traumatic for the whole family. I’m trying my best but every single step has been a battle and it feels like there’s no end in sight.”

What can be done?

It’s unacceptable that people like Sarah and Isobelle are facing so much uncertainty. Government and local areas must act and develop new or improved services. 

The Government has taken an important first step by starting to collect waiting times. But unless each area is held to account for bringing down their own waiting times, we won’t see the vital improvements that autistic people and their families desperately need.

More information and support

At the National Autistic Society, we have lots of information and advice to help people wondering if they or a loved one or autistic and what the diagnosis process if like. 

For more information about the autism diagnosis crisis, please read our recent news story.