Last night I was in a room full of people considered leaders—people making a difference in community work, CEOs and entrepreneurs, people with even longer CV’s than me! I was a finalist in the ACT Excellence in Leadership Awards for the second year running. As I listened to the accomplishments of all the finalists and when I heard my own biography read out, I reflected on leadership—specifically what it means to me and why it is useful in the Autism community. I jotted down a note to write a post on Autism and leadership, got my certificate and then did some serious networking.
On paper I am definitely a ‘leader’—I have four major awards for leadership, spend a lot of my time on Boards and Advisory councils, my writing finds a home in many forums and I mentor a good number of Autistic young people. However, I don’t like to look at leadership only in terms of the things which most people would associate with leadership. In the Autism community, the more useful kinds of leadership do not tend to involve awards and being seen as ‘important’. I have a friend who is a very influential person in the Autism community. This friend spends a lot of her spare time and money attending Autism events, sharing her experience online and talking to people and supporting them. This woman has a beautiful, generous character and I see her influence as going a long way to changing opinions about Autism. She isn’t the CEO of anything but her generosity and attitude make her one of the most effective leaders I know.
Leadership in the Autism community can be small scale, influencing a few people for the better. We tend to respond better to collegiate inclusive leadership. A lot of Autistic people have many negative associations with people in ‘authority’ and the best leadership for people in that situation might involve mutual support and empowerment shared with other Autistic people. There are many online groups based in this kind of leadership. I would personally recommend the group ‘The Sisterhood of the Autistic Woman’.
Self advocacy can be a very influential kind of leadership as is advocating for your Autistic kids. One of the main leadership elements of advocacy is around supporting others through your example and also building your own confidence so you can challenge other related issues. We can all support one another through this kind of advocacy and through the example we set. A sort of mutual leadership. Leadership does not necessarily require reaching large audience or speaking in public. Advocacy in its best form encourages more advocacy. An Autistic parent (or a non-autistic one for that matter) setting an example of pride and advocacy for their Autistic child is one of the most significant forms of leadership and one which may not always be celebrated, but it is incredibly strong.
Mentoring is another form of leadership that Autistic people can benefit from. I highly value mentoring both as a mentor and mentee. There are different ways to ‘do’ mentoring. I approach it as being a supportive ‘critical friend’ for people I mentor but others have a different an equally valid approach. Mentoring relationships are ideally reciprocal. I have mentors and role models now who support my work and growth. The mentoring relationship, particularly if both parties are Autistic, can be very beneficial.
Some issues related to leadership come up from time to time. One of the worst is where someone has a hierarchical view of leadership. Some people in leadership positions think they are ‘important’. Well they are, but to the same extent as every other human being is important! Leadership is a role, just like looking after your cat is a role or spending time with your nephew is a role. Leadership is often seen as a more significant role than other things but I think it is unhelpful to elevate it like that. I view my leadership role as a rewarding job. I try to avoid thinking it is a more important job than anyone else’s because it isn’t.
Some leaders get a little bit too excited about their success and lose touch with the people they are supporting or representing. This can mean their good leadership is undone by the impact of their large ego. Some forms of leadership do benefit from a bit of ego in order to get started but if the person stops listening to others’ views and excludes people, that is usually counterproductive. You lose people if you think you are better than them.
It is important to note that the most valuable leadership for Autistic people comes from Autistic people. Others leading on our behalf is almost always unhelpful. Leadership in the Autism community really needs to be done by Autistic people. ‘Doing for’ us doesn’t help. We tend to know what we need as Autistic people. There are some neurotypical allies who I am happy to share my leadership with on occasion because they actually ‘get it’ but unfortunately a lot of people making decisions for Autistic people don’t ‘get it’ at all and what they do isn’t really leadership, it is management or control.
Leadership is an important part of promoting inclusion and making the world a better place for Autistic people. Many of us are using it in our lives whether or not we are aware of it. Leadership enables us to make change—be that advocating for yourself or your child or hanging out with suity people at an awards night and talking about Autism! We benefit from positive leadership in whatever form that may take.
About Jeanette Purkis
Jeanette Purkis is an autistic author, public speaker and autism advocate who also has a diagnosis of bipolar disorder. She has worked full-time in the Australian Public Service since 2007 and has a Masters degree in Visual Arts. She is the author of three books on elements of autism and hosts an internet radio show. Jeanette has presented at TEDx Canberra in 2013 and at many autism events and conferences, including alongside Temple Grandin in 2015. Jeanette has been facilitating a support group for women on the autism spectrum in Canberra since 2011. Jeanette was the 2016 ACT Volunteer of the Year and a finalist in the 2017 ACT Woman of he Year awards. She lives in Canberra, Australia.