Anna Kennedy OBE Founder of autism services and National Autism Charity AnnaKennedyonline was flooded with message across social media about wait times for an assessment for an autism diagnosis for their children.
Parents are complaining of waiting between two and five years for a diagnosis for their child, and it is very much a “postcode lottery”,
On May 24, Anna read an article that in central London families were waiting as long as a year for diagnosis, despite waiting time guidelines of three months.
Anna share’s the Government has yet to complete the Health Secretary Jeremy Hunt ‘s vow to look at starting to officially record the figures.
Anna was told that their were complex reasons for the delays, including increased demand for the assessment which had increased “significantly” in the last few years due to wider awareness about autism.
More families may believe their children are on the spectrum due to charities like AnnaKennedyonline forging ahead to raise awareness and acceptance.
Anna and her team previously undertook a survey of 2,000 parents, who reported an average waiting time from first reporting concerns to professionals, to diagnosis, of three to five years.
Last week Anna asked her social media followers how long they had waited for their child to receive a diagnosis and was flooded with hundreds of messages from frustrated parents. They told of waiting times from anywhere between months to seven years.
She said the access to special needs services, which includes an educational psychologist’s report and a limited amount of free speech and language therapy on the NHS, appeared to be a “post code lottery.”
Not all local authorities, health or education services provided equally strong support according to the parents she spoke to.
Waiting a long time for a diagnosis meant a window for early intervention could be missed..
“It has an impact on the child, it has an impact on the school, which doesn’t know what they are dealing with. It has an impact on the siblings, and obviously the family.”
While some parents Anna has spoken to over her years campaigning did avoid seeking a “label”, others told Anna of being dismissed.
Some were told their children had behavioural issues or that their parenting was poor, but then a diagnosis came many years down the track.
A recent survey found one in 10 parents said they ended up paying for a private diagnosis.
Anna Kennedy said going private cost in the thousands of pounds, and left many families at a disadvantage.
Anna shares the gap in services needs be addressed nationally..
“I personally think it’s to do with the cutting of services. I totally get that there’s only so much money in the pot, however, as the mother of 2 young men on the spectrum – It is key that children are receiving early intervention as soon as possible once given a diagnosis of autism. Time is of the essence ! .”