brainAn autism campaigner has branded the autism diagnosis process “not fit for purpose” after a survey revealed that more than half of families have to wait five years or more for a diagnosis for their child.

The Autism Diagnosis Survey in the UK found that 63% of families found the autism diagnosis process was poor to average and 54% found the process difficult. 

The survey canvassed the opinions of 2,000 people with a diagnosis of autism or parents/carers of a person with autism in November. The work was carried out Anna Kennedy Online, a charity that advocates for people affected by autism spectrum conditions. The organisation decided to carry out this work after listening to people and families affected either directly or indirectly by the condition who had contacted the charity either in person or through social media. 

Questions were asked about the diagnostic process, including from when the condition was first suspected to when the diagnostic process was initiated, and how long it took before it was completed. 

Participants were also asked to comment on the quality of support they received during the assessment. With regards to the professionals involved 55% were assessed as being between average to poor when it came to working together with others for the benefit of the child or adult concerned. 

In addition, 71% said that it was not easy to find vital information as to how to obtain a diagnosis nor in many cases was it explained where a diagnosis could be obtained.

In 58% of cases it was the parents who first suspected or had concerns that their child may be on the autism spectrum due to their behaviour or development. In 76% of those cases, the child was under 5 when concerns were first raised.

Anna Kennedy, founder of Anna Kennedy Online, said: “This survey demonstrates that the process in place for diagnosing children and young adults is not within many local authorities fit for purpose. Even parents who manage to negotiate the bureaucracy often find that the service provided is disconnected and of poor quality. 

“Professionals may have a different opinion however, my research is based on speaking to the people who matter namely the parents of children and young adults affected by autism concerns have been raised in the past but nothing seems to happen. 

“Granted autism IS difficult to understand and YES other issues/disabilities can present in similar ways however, it can’t be right that in most cases the whole diagnosis process should take over a year.

“The challenge to the government is to sort this out and let parents know when this will be done. After all if it’s not the Governments job whose job is it?”