Welcome to the Louden on Autism Q & A series. Over the course of the next few months, I’m going to be using questions submitted by my website visitors, readers, autism advocates, parents and others to shed light on some of the most important questions about autism. I receive questions every day, and I want to make sure that the answers to these important questions are being shared with all of you.
Please know that these are my opinions and my answers come from my research and my own personal experiences. Of course, each situation is different. All of us as people are different. And no two people with or without autism should be treated the same exact way. But either way, I hope you enjoy the Q & A.
This week, I received a question about advocacy — how I do it, why I do it, and why there aren’t more people with autism out there advocating?
Why have so few successful autistic people come forward besides Temple Grandin to do what you are doing?
It’s very difficult. At the base level, most people can’t afford to do it. I wouldn’t be able to make a living from it, and I am only able to continue because of financial support from my parents — they feel that the message is important, so I’m thankful. Temple Grandin was fortunate enough to be able to graduate college and have a career. After that, advocacy is a difficult process. In some ways, it’s confrontational – you’re challenging beliefs people had and trying to change them. I often meet people who argue with me that I don’t seem autistic. Many of us have spent our lives being worn down, and if we manage to get to a level where we can get by, we don’t want to go out and make it worse for ourselves by having to confront people.
Assuming you have the financial means and personality for advocacy, you also have to have the communication skills. Even neurotypical people rarely have the communication skills to explain complex topics about their own thought processes and experiences. That’s why organizations like Toastmasters exist, to help people learn the techniques and skills to communicate effectively. Many of us with autism wouldn’t really think about going into a situation like that, one that feels largely social, to try to develop those skills. It only occurred to me after years of advocacy as a means of improving my skills, and I haven’t done anything like it yet. While, speaking diagnostically, autism is specifically an impediment to social communication, this can result in communication delays in general or uncertainty in general communication, so you have to be one of the autistic individuals who either overcomes that or doesn’t struggle with that delay.
Very few people who have disabilities go out and advocate for those disabilities — it’s very difficult. Most people just want to find a way to live their lives, and advocacy can add a whole new set of challenges. Autism, unfortunately, presents some unique additional challenges that make advocacy more difficult. You always have to put your own personal mental health first. So for many people, advocacy simply isn’t the right choice, because adding the additional challenges on top of how difficult daily life can be may just be too much. I’ve had to take a step back from my activities in the past, the radio show, and other things because I just couldn’t manage it. Sometimes retreating for months at a time was the best thing for me.
It’s just hard. And it’s not right for everyone in the first place, so the right combination of events has to lead to it. There are a lot of people with autism out there advocating on their own, locally, in their own spaces, but on top of everything else you also have to land in a situation where there are people who can help you spread your message on a larger scale.
It takes a lot of luck, really. That’s the short of it. Some of us got lucky, many of us are still working just as hard, or harder, to help people understand, but haven’t had the same opportunities.
Until next week, thanks for reading.