At nearly every leader gathering I go to I can be assured to discuss it at least once. Sometimes I overhear a conversation or it starts when I'm talking to someone. Sometimes I'm pointed out as one in the know. What's the topic? Asperger's and other Autism Spectrum Disorders (ASD), particularly the various and many ways of ensuring that youth members with ASD can walk the Scouting trail.
And what I hear is that many of you are struggling with various aspects of the ASD experience. Sometimes it's the child, sometimes it's the family, sometimes it's the support (or lack of support) that you have to understand and make the best of working with a child with ASD.
I hear you. It's hard. I live with ASD every day. As a parent, as a spouse, as a child and as myself I have experienced ASD all my life in many different aspects. As a leader I have welcomed the challenge of working with ASD in our Pack, but some days I question my own sanity. And I know that many of you also have the duality of experience in working with ASD in your Scouting experience and living with it in your personal lives, whether it is with family members, neighbours or friends. We talk about it and many of you are extremely knowledgeable about ASD.
Sometimes we end up talking just about the experience, of the challenges and the glorious rewards and we both go away feeling better for having the kind of conversation we can only have with someone who has walked the walk. Sometimes one or both of us leaves still asking questions and still looking for answers. I know I do and I am sure you do too. I carry these questions around with me for weeks and months trying to puzzle an answer out for you or to find a nugget of learned experience that I can gift to the next person who comes to me facing a similar problem.
I have been fortunate lately to spend some focused time working with leaders who work with children diagnosed with ASD.
A couple of DTMs ago I presented a talk and then had a discussion with our District leaders on what is ASD. It was a great night and we could have gone on for hours. There were many situations that we looked at and tried to nut out the best approach. Many leaders shared their own experiences and ideas and I feel this was the most valuable part of the conversation.
More recently our Group had a joint Cub-Scout camp. As my son was one of the Cubs linking up at this camp I agreed with the other leaders that I would take a backseat for as much of camp as possible to allow him to embrace his greater independence in entering Scouts*. This gave me the opportunity to observe our youth members and leaders from afar. In our Group we have a number of other kids identified as ASD, many of whom I know well as they have come through our Pack but some who I haven't had much to do with.
As so often happens between leaders our night time, around the fire conversation turned to analysing the challenges of the day. What ended up happening was one of the most enlightened weekends I've had the pleasure to participate in Scouting. Over the course of the weekend, the leaders and older PLs opened up to understanding the many complexities of working with ASD and I could coach them through interpreting what was happening and then help them to apply strategies in the moment. As we packed up and prepared to head for home we all agreed that it was an incredible learning opportunity to have this time and lengthy space to come to understand our youth members better and to grow in our leadership skills.
It highlights for me that time spent growing our leadership skills is always a good investment. When we know more about ASD it becomes a strength, something we can offer to our youth members and their families rather than something we struggle against day in and day out. We begin to see that youth members with ASD have many strengths, quirky but fun personality traits and true challenges to overcome. We come to see them again as people who we journey the Scouting trail with instead of obstacles in our way.
Why do I write this for you? Because I am passionate about a few things in life. One of them is Scouting and the other is ASD. Or not ASD but people with ASD because they are my people. I have lived with Asperger's all my life and one of the few places that I felt comfortable when I was growing up was in Guiding and Scouting. I know, first hand, how Scouting can change the life of a young person with ASD.
I admit that I have a personal bias - I want every ASD child who experiences Scouting to love it. And that means I have to help you, the leaders, to have the skills and confidence to see the child inside the diagnosis and be ready to welcome them on the Scouting trail. If I could, I would work with you one on one, travel the state and spend weekends away at camp with you. Unfortunately reality then sets in.
Firstly, there's no way I could possibly get to all of you, unless I procure myself a TARDIS or some other temporal shifting device. Secondly, I don't necessarily need to physically see all of you. There are those around you who already know ASD as well as I do and are willing to share that knowledge if only asked. And there is also this amazing thing we have now called the internet. We can share our knowledge here and learn from each other without having to go to the expense and trouble of building a time machine.
So I want to do two things going forward. I have a little book project that I've been working on for a year now. The intent was to create a pamphlet helping leaders with the basics of ASD. The problem is that it never stops needing something else added to it. So I am going to try sharing it in smaller chunks so that the information can start to get out there.
The second is that I ask you to share your experiences and to tell your stories, to make yourselves known to your groups and regions. Ask questions, seek help, share what you know. What would help the knowledge I can share is you asking questions so we can understand what the key challenges are and adding to our knowledge there is a breadth of experience available.
So, hopefully soon, I will share my first article with you. In the meantime, I ask you to reply below or to ask questions. What is it that you want to know about ASD? What challenges are you trying to find solutions to? Hopefully we can help each other out.
Yours in service,
Rosie/Blue Tongue
* My son has severe ASD and I have been his carer/aide at nearly every Scouting activity he has attended as a Joey and Cub. We all want him to experience more independence so moving on to Scouts seemed the perfect opportunity to make a conscious move away from being there for him all the time.
