I was away last week when the final episode of Young, Autistic and Stagestruck was shown on Channel 4 – you can still catch it on 4OD. This series followed nine young people with autism as they worked together to put on a play – you can read about the two previous episodes here and here.
The final episode focused on preparations for their show and culminated in the performance. An outstanding achievement by all that took part – the young people, the directors, choreographers, drama therapist, care team, their parents, family and friends.
When I sat down to watch the first episode of this series I was blown away by the magnitude of the task they were undertaking; but also immediately had concerns about what the experience would mean for those taking part – not just in terms of the actual day-to-day challenges but more in terms of legacy – or lack of it! Nearly all of the young people or their parents profiled in the show talked about feelings of isolation and loneliness, the struggles they face, the fear of failure or of making mistakes. Yet here was an opportunity for them to work with other young people, who they could relate to and at some level who they understood, to create a masterpiece. Young people, hormones, shared challenge, friendships, freedom and expression, stage fright, love of the audience – fairly powerful stuff at the best of times, perhaps doubly so if you are sensitive to stimulation. It was always going to lead to highs and lows for all those involved.
Jonathan, reflecting on his experience, states:
I guess I’m sad that we have to leave and it’s going to be all over. This was a fantastic experience and I just feel better in myself than I used to feel knowing that I’m not alone.
His mum comments that on a day to day basis he’d been the happiest that she had ever seen him. It wasn’t clear from the programme what support was available to the young people and their families as the experience ended….but the final shot before the credits stated that all the families had kept in touch.
This got me thinking about my recent struggles with jet lag and a general lethargy I had to re-engage with my life when I returned from my holiday; it reminded me of being a teenager who went off to my first guide camp, had an amazing fortnight and then suffered from what my mum dubbed ‘post-camp blues’ for the following month where I pretty much struggled with no longer being part of something bigger, with not having my mates around me, and with having to face the reality of returning to school.
I really hope that there was ongoing support for these young people to readjust to life away from this experience. Those feelings of ‘being part of something’ are so strong it would seem essential to me that there was some ongoing legacy and structure for dealing with the inevitable come down and losing that sense of belonging. Something that is particularly acute for some of these young people who have already previous experience of being excluded from school and their friendship circles.
This whole question of legacy is a far broader one than just support in this instance. How do we structure support so that people do not become dependent on it? Better still how do we structure it so that the support can be withdrawn and the individual’s and their community can provide the support for each other? How do we genuinely build capacity in these situations?
Primum non nocere – first, do no harm
I guess this all boils down to essentially being a matter of ethics, motivation and intervention – there is more of a discussion about that over on @fergusbisset’s blog – check out the comments from Sarah (@rufflemuffin) and myself for more about this! Ferg’s post was discussing motivation and design thinking but I think the issue is of equal importance for those providing support or intervention in the shape of services, as much as those who are questioning how services are designed and developed. What is our motivation in the first place? How do we ensure that the person receiving services are central to them? How do we support the young people involved in this venture to design, control, and participate while also ensuring that we leave a genuine, lasting legacy once the curtain falls for the final time?
I look forward to hearing your thoughts on this
A couple weeks ago I blogged about Claire, one of the participants in Young, Autistic and Stagestruck. Claire was talking about making mistakes and how hard she finds life for fear of making mistakes. I drew the comparison between Claire and most of us, even if we rarely take the time out to realise that it is our own fears that are limiting us.
I’m now catching up on the later episodes of the programme and have been struck by the fabulous parents that these young people have. Each and every one of them is doing what they feel is best for their children, even when it is obvious at times that this is about as challenging as parenting can get. I’m not interested in passing judgement on whether they are doing the right thing, or the best thing, it’s not for me to comment but I think they are all trying hard to understand their children and the challenges that they face.
These parents also seem remarkably reflective. I’m not sure whether it is being involved in a programme like this, and someone actually asking you to think about things, or whether parents of any child with a disability are more inclined to question their experience anyway, but for me this programme has included some heartbreaking insights into their attempts to understand their children’s lives.
In Episode Two which can be viewed on C4OD, of particular note for me was Sabina, Mollie’s mum. Mollie is eleven and was diagnosed with autism when she was four. She also has PDA (Pathological Demand Avoidance) which essentially means that she will go out of her way to avoid everyday requests or demands placed on her. This is particularly apparent in the filming as more often than not Mollie chooses not to take part in the group activities.
Reflecting on why this is so, Sabina says:
All of her life she has a fear of failing I think…and I think that she would rather not do something than look stupid trying and looking like she’s failed doing it and I have no understanding why she feels like that.
I’d like to just offer the reflection that Mollie is not really any different to most of us; fear of failure is certainly something I can relate to and I suspect there are similarities not just to my own life, but to the lives of many others too. It is nearly always easier to lie low, to not raise your head above the parapet, to not try, to not take a risk and to not be seen to fail. How many of us can honestly say that we take each opportunity that presents itself to us with no thought given to failure? How much better would life be if we did? Fear of failure is something I have been meaning to blog about for a while and I’m glad that Mollie and Sabina reminded me and encouraged me to do so. So to finish, I thought you might all appreciate the following quote that the Prince of Wales made at the BBC back in 1933…a rallying call as apt now as it was then!
I got home from work tonight just in time to catch Young, Autistic and Stagestruck on Channel 4+1. I’ve not been up to speed on tv lately and would have missed this but I’m hoping someone would have told me about it…altho there was surprisingly little chat in my twitter stream about it! So keep an eye out, it’s a series so I’ll be setting the V+ box.
The programme information on the Channel 4 website states the following:
Rather than make a four-part series that simply observed the lives of young people with autism and highlighted what they can’t do, we wanted to work actively with them to show what they can do. In particular, we wanted to see how involvement in an artistic process – in this case, putting on a show – might benefit them.
I’m very familiar with autism and have a curious fascination with how people with autism perceive the world. My first in-depth experience of someone with autism came when I was volunteering at uni, with a lad called Ben. Myself and my mate Jane visited Ben every week on a Wednesday afternoon, and every week without fail we would watch the Lion King…honestly if I never see Simba again it will be too soon. Ben was very ‘typically’ autistic – if you can be such a thing. He liked routines, wasn’t fond of strangers, showed very little empathy and struggled to keep control of his temper…I really can’t imagine him liking anything about the idea of taking part in this show, which is partly why it grabbed my attention.
I’ve not finished watching it yet but I wanted to blog already about Claire! She’s the one in the grey cardie in the middle of the picture above. Claire is very musical and during the first episode there is a scene where the group are taking part in a singing session – piece of cake you’d think, Claire really doesn’t have anything to worry about, she has a great voice and can sing. Except she makes a mistake, a very small mistake and sings the wrong part at the wrong time. The guy leading the group stops her and points it out, I thought very nicely but Claire is inconsolable.
There follows a heart breaking moment for me where the film crew ask what is wrong (as the tears and mascara are streaming down her face) – Claire responds as follows:
“I don’t like making mistakes because back in the past when I did people kind of, made a mockery of me, I’m too frightened to make mistakes. People can’t just respect you for who you are, they can’t, they absolutely can’t. Sometimes its a mistake, I make mistakes being myself as well”
Claire goes on to say that she feels it’s a safe place for her to cry because ‘outside’ it’s not. Wow, what struck me was the instant sense of community these guys had created (it was only day two) and they were all strangers beforehand – no mean feat with any group of ten young people, never mind ten young people who all have autism.
On a different level, I felt that Claire really spoke for all of us – no-one likes making mistakes, lots of people can’t just respect you for who you are, and I for one am always making mistakes being myself! I really would urge each and every one of you to take an hour and go watch this show, to see the struggles these young people face, but also to realise just how similar their struggles are….I’ll not even start about Andrew and his wants for a girlfriend, that’s for another time.
Pick what you’re interested in…
- If I stay applied and clear my to do list this a.m., I have a beach hut at my disposable this p.m. for thinking and reading. I'm off :) tweeted 3 hours ago
- @phillirose it's seriously important that kids know, and remember, and articulate that :) tweeted 3 hours ago
- @Annemcx single sentence, multiple metaphors, come on - share :) tweeted 3 hours ago
- Urgh, seriously @BBCMarkEaston @patrickjbutler are the hospitals mental? Every time the @BBCEngland uses sloppy language it has an impact. tweeted 3 hours ago
- RT @GrangerKate: Thinking about Cons interviews. "Where do you see yourself in 10 years Dr Granger?" My answer: "Dead..." tweeted 3 hours ago
- @GrangerKate I may have spluttered my coffee at that; would love to know how they respond ;) tweeted 3 hours ago
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