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 🙂