Early diagnosis and support is a common SEN mantra, but what 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.
“Looking back, there were signs from an early age that he was on the spectrum but no one record existed of his characteristics. Poor collaboration between health workers and those in education failed to provide a bigger picture. He was a passive baby, a solitary toddler prone to frequent outbursts, highly sensitive to noise and always the last to meet expected milestones, but because of his prematurity, we were told to expect some delay and difficulties. At the time of his second birthday, the two year check had been scrapped but, having pursued a health visitor to meet with me because I was feeling uncertain about his progress, he was briefly played with and weighed; again I was told he was just a bit slow and he’d soon come on. At preschool it was the same. He was happy to play alone and not join in; he preferred the company of the nursery staff to that of his peers and had repetitive play routines. That he was still in nappies after his third birthday was mentioned to me on numerous occasions and the sense that his lack of development was due to weak parenting increased. He was our first child and we knew no different and somehow accepted this.
“When an astute reception teacher asked if we had ever felt there was anything different about him, we realised our gut feeling had been right. However, no further advice was offered. We were in the position where potentially Callum had developmental and social problems but no-one suggested what we should do next or who we might go to for help. Instead, it was recommended that we wait and see how he developed over the coming year, as he may be too young and an early diagnosis might, therefore, not be accurate.
“To wait and see was not an option for us; it was clear Callum needed help and if this meant seeking a diagnosis before he was five then so be it. He had no friends and his behaviour at home was deteriorating. Family life was disintegrating and, as his parents, we were afraid and our family was becoming increasingly isolated.
“We contacted the NAS who explained who might need to see our son and what evidence would be needed to secure help in school; so began the process to get him a diagnosis. We sought a consultation with a county educational psychologist, who agreed to formally assess him. His early years professionals agreed he needed more help than they could offer. This was a daunting, lonely and hard journey of meeting various medical professionals and talking to strangers at length about our child.
“Once we were ‘in the system’ we were well served by our county council and all the earlier reticence from previous professionals to label him fell away, as his needs were recognised and addressed. He was diagnosed 12 months later and a statement of SEN followed within six months. This happened only because of our constant pursuit of reports and advice and by fighting for what Callum was entitled to. Getting to this point had been a long process and fraught with frustration.
“We can’t help but think that if Callum’s needs had been recognised sooner, had his nursery and pre-school been more aware of autism and better trained to pick-up on his behaviours, then interventions could have been used during those vital early years. Whilst he coped, he did just that: he coped. His progress was minimal. He was unsupported until the age of five years and by then he was lost. During his early years he was an onlooker which made him unhappy, frustrated and unsettled. He built up a fortress of coping mechanisms, but all this did was plant seeds of doubt and low self-esteem in an otherwise happy child. He was not stupid, slow or lazy; he just had autism.”
Making it happen
Parents who do get an early diagnosis for their child often find that they do not receive adequate information or early support and intervention. In Autistica’s survey, 80 per cent of parents would have liked to receive an intervention within the first month after their child’s diagnosis.
Many parents I have worked with over the last 13 years have told me that they have faced a “wait and see” attitude from professionals. This may be particularly true when a child’s difficulties appear to be “mild” or when they clearly have age-appropriate skills in certain areas of development, even when they have a diagnosis of autism and acknowledged challenges with social interaction and communication development.
There is an emphasis on the importance of early identification and early intervention in the new SEN Code of Practice. Clause 5.49 of the Code states that:
“Where, despite the setting having taken relevant and purposeful action to identify, assess and meet the special educational needs of the child, the child has not made expected progress, the setting should consider requesting an Education, Health and Care needs assessment.”
Although this sounds reasonable in theory, in practice, this can lead to a delay in children accessing specialist services and expertise to address their needs, as settings may be left to try to support a child with little or no specialist advice and support in place.
In my experience, children at the more able end of the autism spectrum are particularly vulnerable to this “wait and see” attitude, even though they are often the ones who reap the most rapid benefits of targeted intervention from teachers and therapists when they are put in place. Many early years settings are left to manage children’s needs without this expertise in place to support them.
The new Code includes strong statements about the need for early specialist help, such as:
“It is particularly important in the early years that there is no delay in making any necessary special educational provision. Delay at this stage can give rise to learning difficulty and subsequently loss of self-esteem, frustration in learning and to behaviour difficulties. Early action to address identified needs is critical to the future progress and improved outcomes that are essential in helping the child to prepare for adult life.”
The rhetoric in recent national guidelines, in terms of both the importance of early diagnosis and the crucial need for early intervention, is laudable, but many parents and practitioners still face the reality of delays in obtaining a diagnosis in the first place and, even when a diagnosis is given, the difficulty of obtaining high-quality specialised intervention and support.
The parents of a pre-school aged child obtained an early diagnosis but were then left wondering how to get the help and support they knew their child needed. They said:
“In some ways we were lucky that our son Sam received a diagnosis of autism aged two and a half without much of a struggle. However, the way the diagnosis was initially communicated to us was very confusing and upsetting and the follow-up support patchy and inadequate. The benefit of being alerted so early was that we undertook our own research into what could be done and stumbled across the benefits of early intervention, which we believe has massively improved the way Sam interacts with the world and controls his emotions.”
There are some excellent examples of good practice in the early years. In some areas, parents access support via the national Early Support Programme and specialist training on one of the NAS’s Earlybird training courses for parents. However, just as in early diagnosis, good practice in early years autism education is far from consistent across the country. The Autism Education Trust has published a national set of standards and competencies for early years autism, as well as developing three-tiered training materials which are currently being piloted by four hubs across the country. However, there is an urgent need for continued training of the early years workforce who are so often at the forefront of both identifying and addressing a child’s needs at the earliest stage.
We are beginning to understand and acknowledge the importance of early diagnosis followed by timely specialised and targeted interventions for young children with autism. However, if a “wait and see” attitude persists — both with early diagnosis and early support — parents, children and practitioners will be left without the support that could make such a huge positive difference to a child’s early years and future outcomes in school and adult life.
Alexandra Stanyer is the founder and Principal of the Puzzle Centre, a UK charity supporting families with autism by means of early intervention, training and outreach programmes:
The names of children and parents cited in this article have been changed.