Increase understanding of autism and stop wrongly blaming parents

Sue Leekam and Catherine R.G. Jones

As many as 1.1% of the population of the UK has autism spectrum disorder (ASD), making it a relatively common condition. Yet ASD can still go undetected and be misunderstood. In some children the signs of ASD are obvious while in others the signs present in more subtle and in less traditional ways. Lack of understanding about the ways that ASD presents may mean that the signs are missed, or are incorrectly attributed to a different cause. This misattribution and misunderstanding can have significant negative consequences for autistic people and their families.

In the BBC Wales article on 26^th July 2017, the outcome of failure to understand ASD was highlighted. A mother described her fears that her autistic child’s behaviour may be interpreted as parental neglect and be reported to social services, while a solicitor said that parents were often blamed for inadequate parenting when their autistic children showed meltdowns and sensory overload. Such misconceptions must be tackled. The myth of parental blame for ASD was introduced in the middle of the last century and was dispelled by research evidence in the UK within a few decades.

Therefore we ask the BBC and other media to join the campaign to move public understanding forward by focusing on research evidence. Research evidence makes clear that parents of children with ASD as a group are not in any way selectively reduced in their parenting but may adjust their parenting to meet their child’s specific needs.

Although this BBC news article brought us a focus on blaming, it also brought the important good news that a new Integrated Autism Service has been launched throughout Wales by the Welsh Local Government Association.  The service is dedicated to ensuring that professionals in health, education and social care will receive new resources and training to increase awareness and reduce misconceptions about ASD.  The goal is that professionals become skilled and vigilant to detect a range of behaviours that are ‘on the autism spectrum’ and to respond with appropriate support for individuals and their families. A wealth of information and resources is already available.

Research evidence from Cardiff University’s Wales Autism Research Centre on the signposting of ASD   contributes to these resources. For example a freely downloadable film is now available which provides training on the signs of ASD for professionals and families. A project in schools has also been launched.

ASD a lifelong neurodevelopmental condition that is diagnosed when there are difficulties in social interaction and communication, which co-occur with inflexibility in thinking and behaviour. There is a spectrum of behaviour across these different dimensions. The symptoms develop in the early years of life and ASD runs in families as one of the most heritable of neurodevelopmental conditions.  It affects individuals of all abilities; while some individuals also have intellectual disabilities, others do not. ASD is also commonly found alongside other neurodevelopmental conditions such as ADHD, dyspraxia and language impairments.

Symptoms of ASD are frequently seen alongside associated difficulties. These include emotional difficulties (e.g. anxiety, anger), behavioural problems (e.g. meltdowns), and ‘functional’ problems (e.g.  difficulties sleeping, eating or toileting). In fact, as many as three quarters of all children with ASD also have these kinds of related difficulties.  Interpreting these behaviours without recognising or understanding a child’s autism can lead to misunderstanding and inappropriate advice. Therefore, critical to effective support for these additional difficulties is to understand their complex links with autism symptoms.  For example, the National Institute of Clinical Excellence impress the need for ASD-appropriate support and interventions to reduce challenging behaviours.

With respect to emotional difficulties, it is important to remember that ASD is not a mental illness. However, those with ASD have a significantly increased risk of developing clinical anxiety or depression and it is crucial to understand the connection between mental health issues and the individual’s ASD symptom profile. For example there is evidence that ASD repetitive behaviour symptoms are associated with both anxiety and quality of life outcomes, indicating that individuals need very specific support to promote their well-being.

The Welsh Local Government Association autism services bring unique opportunities for improvement. Let us use these opportunities to prevent families from being disadvantaged by misconceptions and a focus on blaming. By supporting professionals to increase their understanding they will be in a better place to help individuals with ASD and their families. Training, information and resources, and an evidence-based approach are all ways in which the collective understanding of ASD can be improved, bringing benefits for all those affected by ASD.