Early diagnosis and support is the new SEN mantra but what, asks Alexandra Stanyer, is the real picture for children with autism?
As awareness and understanding of autism has increased over the last two decades, there has also been an increase in the number of children being recognised and diagnosed on the autism spectrum at an early age. It is widely accepted that the early years (before the age of five years) is a crucial time for the development of all children’s social, emotional and communication development. There is also recognition that early intervention for children with autism and their families is vital to improve their longer-term outcomes.
However, parents, from across the UK, have variable experiences in seeking and obtaining a diagnosis of autism for their child and in the follow-on support offered following an early diagnosis.
Throughout 2012, UK autism research charity Autistica conducted a consultation with parents and individuals with autism to collect information in four key areas, one of which included their experiences of the UK health system. Their One in a Hundred report (2013) found that families not only often faced challenges getting a diagnosis of autism but also receiving adequate information and services following a diagnosis. More than half of parents reported not receiving enough information on autism when their child was diagnosed. The report quotes one parent as saying:
“The paediatrician said he would grow out of it, there was nothing wrong with him”.
Recent figures from the National Autistic Society (NAS) showed that a third of families wait more than three years for a diagnosis. In a 2013 online survey by autism charity Anna Kennedy Online, over half of the 2000 respondents said they had to wait over five years to get a diagnosis. As the parent from the One in a Hundred report concluded:
“The priority should be diagnosis, better diagnosis, so we can influence better outcomes for the generations to come.”
A local lottery
The National Institute for Health and Care Excellence (NICE) published new clinical guidance in September 2011 for the diagnosis of autism in children and young people. This states that a key priority for implementation is a clear local pathway in each area for recognition, referral and diagnostic assessment of possible autism. Each area should, it says, have in place a multidisciplinary autism team with a single point of referral. NICE recommends that diagnostic assessment should happen within three months of the referral to this team.
The Puzzle early intervention centre works with more than seven different local authorities and we have found that parents experience very different approaches and pathways to early diagnosis of autism, depending on the area they live in. Ease of obtaining a diagnosis can vary even within one county, for example, where different child development teams appear to have differing approaches and waiting times for assessment and diagnosis of autism in the early years.
Sarah and Adam’s story
“Our son, Callum, was given a diagnosis of autistic spectrum disorder (ASD) when he was almost five years old. At the time, the autistic spectrum was an unknown to us and we certainly hadn’t ever heard of the term early intervention. Little did we know what experts we would become, how many times we would have to ignore the advice to ‘wait and see’ and how emotionally draining the merry-go-round of meetings with professionals and ‘experts’ could be.
This is an extract. You can find the complete original article here.