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Autism advocacy: A reflection on my journey and tips for newcomers

Written By Yenn Purkis

I started out doing autism advocacy in 2005, at thirty years old. I was sort of thrust into advocacy by virtue of me writing an autobiography which was somewhat unexpectedly published.  

I remember being terrified at every event I attended, thinking people would ask me tricky questions about autism and show up how inexperienced and ignorant I was. It took me many more years to get to a place of confidence. Even then it was a difficult road.  

I was terrified of being criticised or trolled for my work. I used to read through my blog posts many times, trying to ascertain if there was anything in what I said that people would take offence at. I felt terrified of being attacked  caught between those autistic people I viewed as very hardline on one side and those who were ableist and anti-autistic on the other.  

Given all that, it is amazing that I do any advocacy at all! In fact, I am a very driven advocate and want to make the world a better place for neurodivergent folks. My passion for advocacy has driven me through all those worries and fears to a place where I am happy to share my thoughts and not be afraid of trolls or critics. These days I quite enjoy conversations with people who disagree with what I say as it teaches me different views. Respectful, robust debate is a big plus to my mind. 

The strong focus on advocacy that I have now, began in 2012 after I met a young autistic man who was very limited by all the negative attitudes people in his life had in relation to his capability. When I told this man that I was autistic and had written a book and worked in the public service, he said quite bluntly, That is impossible. You are lying. I was so horrified by his poor view of autistic capability that I launched into what has become a very accomplished and rewarding advocacy career. We all have a rationale for being advocates and things which drive and motivate us.  

Being new to advocacy can be challenging. Here are some tips that I find help me which will hopefully help you too: 

  • Learn how to say ‘no’. You can practise this and get better at it. I have a little buzzer that says NO! loudly. I keep this on my desk and make use of it when I need to. 
  • See other advocates as colleagues not rivals. We do better together than divided.  
  • Find an area of advocacy that you enjoy and focus on that. 
  • Don’t compare yourself to other people. Each one of us is an individual.  
  • Keep learning always. View each event or activity you do as a means to learn and grow. 
  • Build your network. This can be with other autistic advocates, with organisations or with allies. 
  • Try not to rush things. Remember the expression‘It won’t happen overnight but it will happen. 
  • There is no ‘good’ age to be an advocateAdvocates are all ages, from children to young adults to older people like me. 
  • Look after your mental health. Find strategies that support your health and wellbeing. These could be things like: 
    • Finding distractions to take your mind off issues 
    • Accessing help from a professional who understands you and has a good knowledge of autism  
    • Having people in your life who value and respect you  
  • Schedule in downtime and stick to your plan. Make sure your free time is filled with things that you enjoy.  
  • Remember advocacy is not a competition. 
  • Keep focused on why you are doing advocacy. What is your motivation? What do you enjoy about it? 
  • There is no one ‘right’ way of doing advocacy.  
  • You can view your advocacy as a journey. Each activity you do is a step on your journey.  
  • There are no activities that are somehow ‘better’ than others. 
  • It is unlikely that you will do a TED talk (or similar accomplishment) the first year you start out. Smaller events are helpful too. In fact, smaller events tend to lead to more significant ones and any experience of advocacy can help others and grow your profile. 
  • Reaching one person is as valuable as reaching 1000. 
  • There are trolls and bullies in the world. Avoid them where you can and seek support if you are targeted. 
  • You will not get along with all the other advocates. That is OK.  
  • People may view you very differently to how you view yourself. 
  • Everyone has their own area/s of strength and skills. 
  • Be aware of burnout and take steps to avoid it. If you start feeling overloaded then take some downtime. 
  • Building your resilience and assertiveness is a good thing for advocates to do. This is something which is likely to be ongoing throughout your career. 
  • Reflect that you are doing a good thing which is helping lots of people.  

Fifteen years ago, when I wrote my first book, I would not have believed where my advocacy journey would take me. The path I took is not for everyone but I am really happy about the decisions I took. I hope these tips and my story will help you in your own advocacy journey. 

 

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