Blog | Talking autism
Volunteer, Helen Gregory tells us how her son Zack inspired her to make a difference…
Struggling with change
My son started as a Beaver Scout about 15 years ago. Zack is on the autism spectrum and has Asperger’s Syndrome, dyspraxia, dyslexia and dysgraphia. He went to Beavers and then on to Cubs and managed pretty well. However, when he made the move up to Scouts it didn’t work out.
Zack couldn’t cope with the chaotic structure of the meetings. They were too noisy and took place in a building that echoed, driving him mad. One evening it all got too much for him and he ran out, disappearing into the night. The leader called us straight away and we went out to look for him. We later found him trying to walk the three miles home and he never went back to Scouts again.
He didn’t attend primary school. He ended up going to a mental health unit and they were the ones who eventually diagnosed him. He went to a mainstream secondary school that had an enhanced resource facility for young people with autism, which meant that he got support throughout his school years.
Zack’s outlook and interests are now very narrow; getting him away on holiday for example, is near impossible. He tried college but there wasn’t enough support there; he had numerous panic attacks and eventually dropped out.
He struggled and eventually had a nervous breakdown, which led to him being housebound for six months. Zack now has two support workers who visit him a couple of times a week and take him out of the house, helping him to do whatever he wants to do: usually going shopping or to the gym. He also plays a fantasy card game that we take him to every Friday evening.
Inspired to help
Seeing what happened to Zack as he grew up inspired me to get involved in Scouts to give every young person the chance to succeed, regardless of whether they have an additional need or not.
Thankfully, circumstances are different now; children are being diagnosed much earlier. As a result, my Scouting role has exploded. Leaders are more aware of the difficulties young people face with autism, and, if they don’t understand, there is support in place.
I go out to Groups, help put into place strategies and offer help, advice and support to leaders who need it. I also run talks for leaders to raise awareness of ADHD and autism.
There are lots of things leaders can do to help. It’s about understanding the conditions the young people with additional needs have, keeping things structured in meetings and talking to the parents to get to know what triggers cause their autistic children to have a meltdown. It’s also about identifying the quiet place where the young person would be happy to go.
However, you don’t want the Scout to go to their quiet place and have nothing to do, so to combat this, we introduced a shoebox system; asking the parents if there are any small objects the young people are particularly attached to for us to keep at the Scout meeting. The leaders then put the shoebox into the designated quiet place and if they feel the need, the Scout has something familiar in the box to occupy them.
The need for the box decreases as time goes on; the meltdowns are less frequent and the young person ends up managing themselves to adjust to the situation.
A fantastic environment
Had we had diagnosed Zack earlier, we would have been more informed and would have been able to get more information to the leaders at Scouts; Zack would have been able to experience Scouts. Whether he would have been able to go through all the sections, I’m not sure, but he would have had a better chance.
Scouting offers a fantastic environment for young people with autism because it’s a structured environment. We have a well-organised programme and regular Scout meetings. That structure and familiarity is what Zack responded to initially. Once it got a bit more challenging – where he was expected to do more and be a bit more independent – he couldn’t cope. Hopefully, with the support he has now, Zack can start to become more self-suffcient.
He’s currently doing the odd driving lesson, which is fantastic. Then we’ll start to look at jobs. His support workers will help him with the interview preparation. Zack knows what he needs to do and he’s aware that there needs to be independence at some point. It’s going to be tough, but he’ll get there…
Help and advice
There is advice and resources on scouts. org.uk/autism to help volunteers understand autism and deal with young people on the spectrum. Our Specialist Advisors for Diversity and Inclusion are there to offer support and can run courses at UK events for leaders. Email firstname.lastname@example.org for contact information.