I'm an autistic leader - here's how my team help me feel included

Brownie leader Allison Johnson answers some of our questions

Allison Johnson, LIC 8th Frimley Brownies, Surrey
10 August 2021

Allison got in touch with us to talk about what it’s like to be an autistic leader in guiding.  

We asked her some questions about her experiences, and how allistic people (a term sometimes used for people who are not autistic) can help autistic volunteers, parents and girls to feel included in Girlguiding. 

Autism is a lifelong developmental disability that affects how people communicate and interact with the world. It affects people in different ways, and autistic people will have different strengths and weaknesses. The National Autistic Society estimates that 1 in 100 people in the UK are on the autistic spectrum.

'My name is Allison, and I am an autistic leader in charge. With Girlguiding working to become more inclusive, I feel sharing my experience might be of value to other leaders.'

What does autism mean to you? 

'This is a really important question. We are often told that there are certain traits that indicate autism, such as poor eye contact, inability to emotionally connect, or stimming. Some people are super organised, others live in complete chaos, some are very creative and adaptable while others are rigid rule followers. To me, we are whatever we are, with hyper versions of otherwise ‘normal’ character traits. Like a growing number of autistic people, I prefer the term neuro-divergent. We know that how our brains work differently to the majority of people and that this difference has real value to humanity. There is more I could say, but this is not a book.' 

When did you find out you are autistic? 

'I was assessed as autistic when I was 36. Shortly afterwards I was a trial subject in an autism life skills programme, which made a huge difference. To most people, I don't appear autistic at all but then something happens and it is pretty obvious. Looking back, it was obvious even when I was very young. On my third birthday I was outraged to realise boys and girls were treated differently. At eight I realised I was not interested in and didn't understand role play games. At nine I was already interested in politics. I loved Brownies but never really 'got it' the way the others did.'  

How did you become a leader? 

'I had been in Girlguiding from Brownies through to becoming young leader aged 17. I left because of the pressure of college, though in reality I was becoming aware of my shortcomings. Years later, my daughter's Guide leader, Wendy, recognised both my shortcomings and my strengths. I was 'that' parent who never remembered forms, who would forget where and when to meet and often forgot to collect my daughter. However, Wendy saw a woman who was great with kids and accepted them for who they were - a potential leader who would come up with fun ways to do stuff and who was willing to help out. I didn't go to her unit, though I took over as unit helper when my daughter left to go travelling.' 

How did the other leaders make you feel included? 

'Jo Eddowes was the leader in charge at the time. She is gentle, kind, and has years of guiding experience. Philippa Taylor was the assistant leader, who was brilliant at quietly and invisibly doing what needed to be done. We are all very different people and have our own way of doing things. By then I had done the Davis Autism Approach Life Skills and so was nowhere near as chaotic as I used to be. Jo had faith in my ability to become a qualified leader and gave me opportunities to prove that to myself. Penny, my Learning Qualification mentor, was also very encouraging. Jo did all the awkward parent/leader stuff. That was probably a good idea, as I suspect I would have left as soon as I realised just how difficult it would be for me.'  

What do you mean by that? 

'We had a situation with one of our parents recently. She has always been a great parent, but she disagreed with us about some of the procedures we follow as Girlguiding volunteers.  

This is where my autism is a big problem. What is going on for her, what her needs are, what her understanding of the situation is - I know enough to know I haven't got a clue as to what is going on. I have no idea how to work with this situation. Experience has taught me that I am going to get this very wrong. It is awful and I wanted to resign as a leader because it is so stressful to be in that place mentally.' 

So what happened? 

'This is why it really matters that autistic and allistic leaders work together. My allistic leader-in-training took over the correspondence. 

Together we worked out the best approach to tackle the knock-on effects. We discussed the impact of what was going on with the girls.  We all had a different understanding as to what the girls were going through and what their needs were. We had to think carefully about how to manage our response so as not to undermine parent/child relationships while also standing our ground.  Using our respective skills and experience, we were able to manage the situation.' 

What would you say to other leaders about including autistic leaders? 

'My responses are for both autistic and allistic people: 

  1. Remember that autistic and allistic people use language differently. What is polite and clear to one is possibly very offensive to the other. That goes both ways, so assuming no offense is intended is very important. 
  2. When you don't understand why the other person won't do that really simple thing, accept that maybe that is not a simple thing for them. In fact, it might be incredibly difficult and maybe impossible for them. This also goes both ways - there are a lot of things autistic people find really easy that are extremely difficult for allistic people. 
  3. Look for the person's strength. If you can't see it, look for what you think of as their greatest weakness and work out how it can be a strength. 
  4. Accept your own and their limitations. Sometimes that means this is a leadership team that really won't work. We still want to keep both the autistic and the allistic volunteers in guiding, so what can we do? Ask ourselves, what it is about your own needs that is making this difficult? How would examining and changing our own behaviours and attitudes help ourselves grow as individuals and as leaders?'  

Thank you for sharing your experiences Allison! We're so grateful to have you in our guiding community.