On being an autistic advocate and the difficulty finding support

I would like to start by thanking my good friend for bringing this issue to my attention. I would not have thought to write on the topic without that person, and it is such a very important topic.

Being an advocate is weird. For most of us I think it comes with a degree of imposter syndrome. Beyond that, we have to be SO careful about what we write and say. We are in the public eye at all times, and simple mistakes can ruin our credibility. The internet is an unforgiving place.

Advocacy comes with a lot of stress, that’s why it concerns me that many of us struggle to reach out for support. I was fairly active in support groups, reaching out for help and advice when it was needed. These days I find myself not doing so. I am worried about how it will reflect on my advocacy work. I know this seems hypocritical because I am a huge advocate for open communication, but I find myself reaching out to my “real life” friends (who have very little knowledge of the autistic community, despite many of them being autistic themselves) more often than I reach out to members of this community.

This is especially problematic when you consider a lot of the bullying and infighting that has occurred between advocates in recent times. Only when I started speaking to other advocates did I realise the extent to which we had all had very similar experiences. Prior to this I had felt very alone in my advocacy. I owe a lot to one support group in particular, which I will not name so as to keep the other members safe.

We as autistic advocates need to open up our lines of communication. We need to show each other that we are together in a shared experience, and then work together to improve the areas that are more stressful and traumatic. We especially need to do this for the newer advocates emerging onto the scene. Many of them are young, and potentially a bit naive to the realities of advocacy. For their sake, we need to show them that it’s okay to speak out and seek support.

I am grateful for the other advocates I have met, they have been a source of much strength and inspiration for me, and have done an awful lot to support my advocacy work. I look forward to continuing my work in the knowledge that I have a safe network of people (who understand the community) who I can have support from.

If you’re new to advocacy, I suspect that you may be feeling a little isolated right now. Please know that it’s okay to reach out for support. Your highest priority should be to look after your own wellbeing. You can’t pour from an empty cup, and the work you are doing is vital.

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