Wednesday, 27 April 2016

The A Word: the science behind...

The A Word
I'm not typically inclined to talk about TV programmes on this blog (well, not usually) but today I'm making an exception based on the conclusion of the BBC drama series 'The A Word' last evening.

For those who might not know, this [fictional] series charts the ups and downs of a family living in the Lake District whose lives are in one way or another touched by autism as a function of a 5-year old boy diagnosed with the condition. The show had a notable addition to the cast with a very straight-talking Christopher Eccleston appearing (yes, one manifestation of Dr Who) but all the actors provided some pretty sterling performances including the child actor Max Vento, who plays Joe 'the 5-year old boy with autism'.

I don't want to go into all the ins-and-outs that the series covered (bearing in mind it was a fictional drama series and not 'real life autism' as per series such as the one by Louis Theroux) but there were a number of themes included that do fall into the peer-reviewed science domain typically covered on this blog. I'd like to briefly cover some of those themes and perhaps provide some short discussion on what they might mean without trying to over-analyse or over-generalise things. I might add that this is my interpretation of the series and readers are also advised to see what others also thought about it.

So:

Wandering
Every episode of the series opens with Joe happily strolling down a deserted road set against the backdrop of the beautiful Lake District. You'll already note that Joe is a boy and so already we have our first 'stereotype' when it comes to autism. Joe has a 'thing' for music (and some mighty good taste in music I might add) as per his almost constant earphone-wearing, and seems happy on his trails on his own. During most episodes of his wanderings he's met by a friendly couple who know Joe and are happy to return him home. I personally was in two minds about this depiction. As throughout the series, it's obvious that the writers know something about some of the themes in autism (research and practice) and I daresay that this reference is a nod to the idea that autism and wandering has received some much needed research attention. In real-life however, any 5-year old child discovered walking on their own on any road would in all likelihood trigger safeguarding mechanisms should authorities become aware... see episodes 5 & 6.

Parental concerns and diagnosis
The process of going from parental concerns about Joe's behaviour to getting a diagnosis is covered in the series. Again keeping in mind that this is fiction, I think many people (certainly on Twitter) saw the most disconnect in this part of the story given (a) the reluctance of the parents - particularly the mother - to 'accept' something might be 'out of place' with Joe's behaviour and (b) the extremely quick time taken for a diagnosis of autism or autism spectrum disorder (ASD) to be given. Without generalising, diagnosis here in the UK is very rarely a quick thing and many parents can and do feel some relief as and when the 'hurdle' of diagnosis has been eventually overcome. Certainly here in the UK, receipt of a diagnosis normally triggers access to important future plans.

Schooling
Mainstream schooling vs. home schooling is an important issue covered during the series. We for example, see Alison - Joe's mum - worried about how Joe will cope in his village primary school where his social interaction with other children for example, looks to be minimal at best. The storyline in this area was perhaps one of the most powerful parts of the series as parental worries of 'how will my child cope?' intermixed with the variety of emotions viewers watch the family go through. Interestingly, the series did offer something important to this story as Joe himself voices an opinion about his desire to go to school. Granted things might not always be so easily communicated in real-life but the idea of taking into account the child's wants and wishes when it comes to schooling options is perhaps an important one. Later in the series we also see how Joe does make friends at school. Viewers who've seen the series might have also noticed the opening and closing of school doors during these school segments by Joe reflective of what might be considered a ritual or routine - a core feature of autism.

Speech and language therapy
Again, outside of the dramatic plot line that follows the introduction of a speech and language therapist (SALT) to the series (who it turns out was bullied by the mother of Joe during her school days), it was indeed useful to see how much impact a good SALT can have on a child with autism. As well as emphasising the 'stopping and starting' of developmental progress that accompanies any child irrespective of the presence of autism or not, the series does well to highlight how a range of professionals can make a real difference to the lives of children on the autism spectrum. Personally, I would have liked to have see the archetypal all-rounder that is the occupational therapist (OT) also included in the storyline but there you go...

Sleep
Joe is seen in pretty much every episode asleep with his night light on followed by a soothing kiss good night from his mother. Again, not one to try and generalise but not every autistic child and their family look forward to such peaceful nights...

Parent and family relationships
Throughout the series, viewers watch how the ups and downs of family life manifest in the relationships between family members. We see for example, how Alison devotes almost her entire existence to Joe in terms of getting a diagnosis and arranging suitable schooling for example, whilst also running a busy household and a business. The stresses and strains tug and pull on important relationships manifesting in various different ways and impacting on various decisions. There are sexual scenes during the series and I know from what some people have written, these were thought of as a distraction to the main storyline. I however think it was important for the writers to include all aspects of parent and family relationships including more intimate moments (bearing in mind the program aired after the watershed). The idea also that autism in the family has the ability to impact on siblings was another important feature of the series. The experiences of Joe's older (half) sister, Rebecca, illustrate how siblings might require additional support when a diagnosis of autism is received in the family but also how they can be very vocal advocates for their brother(s) or sister(s) with autism.

Fever and autism (oh and broccoli...)
Episode 4 of the series introduced some interesting research-based concepts into the storyline. We see Joe develop an illness and 'fever' following a planned sleepover with some school friends resulting in some 'changes' to his behaviour. Joe seems more responsive as words like 'empathy' are banded about (bearing in mind no sweeping generalisation are required on this point). Changes to the presentation of autism in 'some' children following fever have been documented in the peer-reviewed literature [1]. It's not by any means a universal phenomenon and so one has to be a little bit cautious about generalisation. It is however something that requires quite a bit more study (allied to related research areas) about how certain 'types' of autism might be sensitive to such physiological changes. In the same episode we also hear mention of the words 'broccoli' and 'research' pointing to another issue that has surfaced on the peer-reviewed autism research radar [2] (see here for even more discussion). Although you might not know it, the commonality between fever and autism and broccoli and autism (aside from autism) is one Andrew Zimmerman and as if to prove a point [3]...

A hat-tip to gluten and casein
I also had to cast a wry smile as the series did include some reference to a topic close to my research heart: diet and autism, and specifically the involvement of gluten and casein. Granted, the reference to gluten and casein (although lactose is mention over casein) comes from one of the other boys sleeping over at Joe's house who has various 'allergies', but again, I think this highlights how the writers had some good insight into the varied autism research scene.

Final thoughts
There is always the risk that films or programmes 'about autism' can present a stereotype of autism and thereby fail to show just how wide and heterogeneous the autism spectrum is. I don't doubt that similar sentiments will be expressed about The A Word paralleling previous artistic presentations such as Rainman. That also important issues such as anxiety and sensory-perceptual issues were only paid lip service during the series is worthwhile mentioning as were the various often life-changing comorbidities that can accompany a diagnosis such as epilepsy or seizure disorders or learning disability. No programme will ever be perfect.

But I do think that quite a few of the important elements that surround childhood autism were included in the series albeit with the hint of drama required for such fictional storytelling. The struggles and strains were balanced with lighter moments and the idea that 'Joe is still Joe' even after receipt of an autism diagnosis came across on multiple occasions particularly from his on-screen sister. I think the writer Peter Bowker probably said it best about The A Word: 'You won't understand autism after watching The A Word – but it will make you want to learn more'. That sounds about as good a sentiment as any when it comes to the series and further expanding the public view about the very heterogeneous autism spectrum...

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[1] Curran LK. et al. Behaviors associated with fever in children with autism spectrum disorders. Pediatrics. 2007 Dec;120(6):e1386-92.

[2] Singh K. et al. Sulforaphane treatment of autism spectrum disorder (ASD). Proc Natl Acad Sci U S A. 2014 Oct 28;111(43):15550-5.

[3] Singh K. & Zimmerman AW. Sulforaphane treatment of young men with Autism Spectrum Disorder. CNS Neurol Disord Drug Targets. 2016 Apr 13.

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ResearchBlogging.org Singh K, & Zimmerman AW (2016). Sulforaphane treatment of young men with Autism Spectrum Disorder. CNS & neurological disorders drug targets PMID: 27071786