During November 2013, 2000 people who have an autism diagnosis, or are the parent or carer of someone who has a diagnosis, completed the Autism Diagnosis Survey in the UK.
Thought to be the largest survey of its kind involving people who have an autism spectrum condition, the work was carried out by volunteers from the UK charity Anna Kennedy Online.
Respondents were asked about the diagnostic process, the challenges for individuals and families associated with autism assessment and diagnosis, and the support they received during the process.
Many of those surveyed voiced their frustration at the length of time that the autism diagnosis process takes, particularly as the literature on autism stresses the importance of getting an early diagnosis, followed by early intervention. In the majority of cases (58 per cent), it was the parents who first raised concerns that their child may be on the autistic spectrum.
In 76 per cent of cases, the person concerned was under five years old when s/he was first suspected of having autism. 16 per were aged between five and 10 years, four per cent between 11 and 20 years, and four per cent between 21 and 50 years.
The diagnostic process started when the child was under the age of five years in 59 per cent of cases, between the age of five and ten in 30 per cent of cases, between 11 and 20 in nine per cent of cases, and between 21 and 50 in two per cent of cases.
Of the people who received an autism diagnosis, 38 per cent were under five, 39 per cent were aged between five and 10 years, 12 per cent were aged between 11 and 20 years, and 11 per cent were aged between 21 and 50 years.
In the vast majority of cases (91 per cent), families were given the diagnosis through the NHS, while nine per cent went privately. Roughly 63 per cent of families stated that the diagnosis process was poor to average. With regards to the professionals involved, 55 per cent were assessed as being average to poor when it came to working with others for the benefit of the child or adult concerned. The survey also revealed that many families waited up to five years (or more in some cases) from when autism was first suspected to receiving a diagnosis.
Autism campaigner Anna Kennedy believes her survey shows that the process in place for diagnosing children and young adults is not fit for purpose and requires immediate improvement. Parents who manage to negotiate the energy sapping bureaucracy often find that the service provided is disconnected and in many cases is of unacceptable quality, she says.
“The challenge to the Government is to sort this out and let parents know when this will be done”, says Mrs Kennedy. “After all, if it’s not the Governments job, whose job is it?”