Wednesday 23 March 2016

Autism is the A-Word.

Last night a brand new programme called The A Word kicked off on BBC1. There had been plenty of publicising in advance and it felt like the whole autism community was sitting on the edge of their seats, waiting to judge.

It was a watershed moment; the first prime time mainstream drama with autism at the core of its story on a main TV channel. The series follows the experiences of the Hughes family as they discover that their five year old boy Joe has autism. It was a difficult watch for me, and for many other parents of autistic children who have been through the same process. It brought the memories of when we were at that stage (six years ago now) flooding back.

The first episode covered many familiar experiences of those at the beginning of the autism 'journey' (otherwise known as the 'rollercoaster'). Speech and language assessments, followed by hearing checks as it appears your child can't hear you, and then many more appointments where you have to repeatedly recount all your child's details and a potted history of their lives up until that point, are all common for families who have identified that their child may have needs.

One point in the programme which I particularly identified with was when the mum questioned 'what, are you saying he (she in our case) has autism?'. I knew very little about autism, certainly didn't suspect it at all, and yet when the paediatrician started talking around the difficulties, the word somehow sprang into my mouth. Questioning, both yourself and others, features strongly in the lives of those living alongside autism.

So many more issues were raised in this first episode; the difficulties around parties and the lack of invites for many children with autism was one of them. This can be just as hurtful for the parents as it is for the children; lack of inclusion anywhere always cuts deep. We have been extremely lucky when it comes to parties; partly due to Sasha tending to refuse quietly rather than explode aggressively in the classroom, and because she is generally quite sociable (a characteristic of her particular type of autism, Pathological Demand Avoidance), but also thanks to the wonderful parents of her classmates who have tried to include her. Parties have been difficult (both attending others and her own), and just like Joe in the programme, she's not a fan of having Happy Birthday sung to her. The anxiety over the build-up of attention is too much for her to bear. Still, it's nice to be asked. Many parents of children with autism aren't extended that courtesy sadly.

As the show aired, #TheAWord began trending on Twitter. Many people with connections to autism were online, waiting to give instant feedback as they watched. For me, this is where Twitter really comes into its own as opinions are squeezed into 140 characters, conversations then begin and new people to follow, often with a shared experience, are found. From what I saw, the majority of the feedback was positive.

There were two small areas of contention; the first being that the family managed to acquire a diagnosis for their son very quickly. For us, that part was fairly true to life - we referred for speech and language in July 2009, saw a speech therapist in November and were then referred on to a paediatrician who I saw in January 2010. At that first meeting with the paediatrician, autism was suggested, and it was confirmed in a follow up meeting 4 weeks later. However, I appreciate that we were very lucky (a great paediatrician) and that for the vast majority of parents of children with autism, it often takes much longer for a diagnosis to be forthcoming. Using a longer timescale would have dragged the programme out so I think it's fair that they showed an 'easy' route for the purposes of the show.

The second area where there were rumblings of discontent was around the use of terminology - should we be saying that a child (or adult) 'has autism' or that they are an 'autistic child'. This debate has the potential to get heated when people strongly believe one way or the other is best. I've written about this before, in my post for World Autism Awareness Day 2015, and in there I link to a post by one of my favourite writers, Diary of A Mom. She puts it much more eloquently than I ever could; but my choice, like hers, is to use the phrase 'Sasha is autistic'. In a nutshell, the thinking behind it is that autism is not something you catch, it's not a disease, it just describes how her brain is wired differently. As Sasha gets older and begins to understand all of this for herself, we will discuss it with her and of course I'll use whichever words she prefers. It's personal choice; I'd suggest asking whoever you are conversing with directly how they would like to be addressed.

Anna Kennedy shared her thoughts in Is the A Word realistic? and I nodded along in agreement with them all. In particular, the misconception that all autistic people have a 'special talent' - a small proportion may be exceptionally talented in areas such as art or maths, but all children are different and it doesn't help to make mass generalisations.

I'm interested to see how some other aspects of living with autism in the family will be developed as the series continues; in particular how it affects siblings, the untold stress it puts on relationships as partners with different beliefs and mindsets are challenged (what is 'normal'?), how to tell both the child and others around them about the diagnosis, and the inevitable follow-up questioning and possible diagnosis for others in the wider family (in this case the lovely Grandfather)!

My only concern is how many people will watch who don't have autism in their lives... it'd be helpful for others to have a little more understanding of the specific challenges faced by families after diagnosis. Great job done by the BBC in my opinion though, and fantastic acting, especially by the little boy.

Did you watch? What did you think? Would love to see your comments on this!

Sons, Sand & Sauvignon

No comments:

Post a Comment

Comments are always very much appreciated and can really help the conversation go further...