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Supporting Parents of Children with Autism: the importance of careful communication

New research on a therapy that aims to support parents of autistic children has been causing a stir with some autistic children’s parents frustrated at a sense that they are once again being blamed. As it stands parents of autistic children already have enough challenges to face without this additional pressure.

When I worked as an early years teacher, parents of autistic pupils  often felt frustrated by the difficulties they faced when trying to access support for their child. They felt unsure about what treatment or therapy would help their child and if there was anything they should do at home. Often, clear advice and support was limited.  Similarly, my colleague Bart has seen such challenges first hand having grown up with a younger brother with severe autism. As he explains:

“It’s important for challenges faced by parents to be recognised, and research needs to be communicated in a way that emphasises not just an intervention’s impact on the child, but also how it impacts on parents. I really sympathise with parents frustrated by the damaging implication that parents are at fault and the risk that others might come to believe a parent can ‘cure’ their child.”

The study in question examined the long term effects of ‘PACT intervention’ (Pre-school autism communication trial).

Autistic children’s communication and language development is impaired, and they may not communicate in a way that parents easily identify or understand. The therapy therefore aims to teach parents to identify ‘windows of opportunity’ to maximise emerging communication and to elicit responses from the child, thus improving communication. Improved communication might then reduce the severity of a child’s symptoms.

Although the study’s findings were positive, some parents responded to the media coverage with scepticism and anger. Many parents felt blamed for their child’s autism and chastised for not supporting their children ‘correctly’. This is perhaps unsurprising given the way the research was framed in the media. Had it been presented with more nuance and detail, autistic children’s parents and teachers may have welcomed it more.

The media made three main mistakes when presenting the findings:

  1. Using the term “super parenting”

In the search for an eye-catching headline many media outlets settled on the term “super parenting” as a description of the way the therapy seeks to make parents more ‘in tune’ with their children. This term made some parents feel that they were being told “if you were a better parent, ‘a super parent’, you would make your child’s autism better”. It is unsurprising that this riled many parents, particularly those who have already suffered theories which blame parents’ decision making or parenting style for autism, all of which have been widely discredited.

 

  1. Reporting the therapy as the ‘first’ or ‘only’ thing to improve autism

The Sun and The Guardian, (amongst others), either stated or implied that PACT therapy was the only thing that had been shown to impact autism. Readers responded to this claim with scepticism. Firstly, some pointed out that they had received therapies that were similar and had already had a positive impact on their son or daughter. Secondly, some readers noted that improvements had also been seen amongst children in the control group who had received ‘treatment as usual’.

 

  1. Exaggerating the findings

Although most of the articles acknowledged that PACT is not a cure, many headlines made exaggerated claims about impact.

screenshot-85Readers might be left under the impression that being a parent of an autistic child or indeed being an autistic person, is now a whole lot easier. Parents expressed concerns that as their child continues to show severe symptoms because they either haven’t been able to access the treatment or because it did not work for them, people who have been left with the impression that autism is more treatable may become more judgemental and less understanding.

Far better would have been to focus on the following three points which hopefully make a genuine contribution to the evidence base around how to support children with autism and their parents.

 

  1. Parents deserve support

PACT therapy places parents where they deserve to be: at the centre of support for their child. It recognises parents’ hugely positive potential impact due to their unique status compared to a stranger. It also recognises parents’ commitment and willingness to put any amount of effort into helping their child.

However, it should also be emphasised that this type of therapy is not about ‘being a better parent’ and parents cannot be blamed in any way for their child’s autism. This is something that needs to be stated explicitly to counteract the effect of previous blame theories.

  1. The impact on communication and quality interaction

Although there was some positive impact on the severity of some children’s autism, the impact on parent-child interactions themselves was also extremely positive. Indeed, even where a child’s autism symptoms did not change on the formal assessment, the quality of parent-child communication often improved dramatically. This is worth celebrating in and of itself, regardless of impact on autism symptoms.

As the table below shows, PACT increased parents’ ‘synchronous communication’. In other words, parents were better able to understand their child’s intentions and attempts to communicate and they could therefore respond more appropriately. As a result, children became more likely to initiate communication. Together, these improvements led to more interaction and turn-taking between parents and children.

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  1. The long term finding is crucial

PACT therapy is not new, in fact, the original study took place in 2010 and the idea that early interventions and therapy which focuses on parents and communication can have positive impacts is even older. However, the finding that benefits are sustained, in other words, that positive impact in the PACT group compared to the control group is maintained six years later, is really important. It demonstrates that the positive impact of the therapy (found in the original study) does not disappear once the therapy sessions are over.

PACT should therefore be welcomed as a treatment that is not only relatively cheap, non-invasive, supportive for parents and administered over a short time period (6 months) but which also has a positive impact over a longer time period (6 years and possibly beyond). It is therefore regrettable that in this case, poor reporting got in the way of an important message.

 

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