Following in an Advocate’s Footsteps
“There was an idea… To bring together, a group of remarkable people… To see if we could become something more… So when they needed us, we could fight the battles… That they never could.” ― The Avengers Initiative.
The year 2016 was the beginning of an incredibly important change in my life. After having my employment terminated in June, I became increasingly concerned by what felt like an imminent relapse into suicide. Something had to change: me. All I knew was that I had ADHD. With scarcely anyone to turn to for help, I was driven to find answers on my own. The day after my 35th birthday, I started my long journey as an advocate.
Then, between May and June 2022, everything changed. A full three years after my diagnosis, autism took center stage in my life. One year later, I started finding answers to questions I did not even know I had. Now, in 2024, I have learned more than I could have ever imagined and grown as an individual. I would like to take this opportunity to offer my guidance so that I may help those who follow in my footsteps.
Of the many lessons I have learned as a grassroots advocate, the most important would have to be to avoid politics at all costs. I started with absolutely no idea about what an advocate should be. I was aware that advocates traditionally lobbied directly with their state legislators or politicians in our nation’s capital, Washington, D.C. I needed to find answers to whatever was affecting my mental health and to help others like me.
But in 2016, the very notion of becoming involved with politics was treacherous. In the years since, it has become infinitely worse. The rise of elitism has divided us in more ways than I ever thought possible. This has made efforts to advocate for common autism support needs impossible if politics become involved. The most efficient way to represent us, the autistic people who need your help, is to avoid politics entirely.
Being prepared before you begin is a crucial step. Being a mental health advocate is not for everyone. But it is possible with the right approach. How much do you anticipate devoting to advocacy? If you tailor your preparations to what you know you can handle, you will avoid putting yourself at unnecessary risk. Plan ahead. Be prepared. Talk to more than one advocate to see what challenges they faced, so you know what to expect.
Advocating for people is a great responsibility. Their livelihood is in your hands. So is your own. While I discovered so much as an autistic advocate, I could not anticipate uncovering layers of serious trauma that have now put my life at risk. As committed as you may feel when you begin, know that your mental health is of the utmost priority. By being prepared, you can weather any challenge you will encounter.
Be objective at all times. Objectivity is the use of facts and logical, deductive reasoning to support your point of view. Your point of view is for the benefit of the autistic people whom you seek to help support. Their needs are often time-critical. If you allow your personal beliefs or feelings to cloud your judgment, you risk delaying advocating for the help that those people might desperately need. Objectivity is not all that is needed.
Be impartial whenever possible. You may start as an advocate and be supportive, for example, of those who are or identify as transsexual. Autistic people come from all walks of life. Autistic youth have been documented as having been coerced into medical gender transitioning and suffering serious trauma, forcing them to detransition. By being impartial, you can ensure that you help as many of us as possible.
Be observant whenever you can. While psychologists and psychiatrists lord over formal research, we represent the best source of information for their research. We are what are referred to as primary sources. In formal research terms, a primary source has firsthand lived experience. We know what our autistic lives are like. As long as we adhere to objectivity, no one can tell us otherwise. In this way, we can also learn from each other.
When you choose what you wish to focus on advocating about, observe and know the people you will be representing. We may have similar experiences as you do. By knowing and then comparing common similarities, you will gain knowledge that is crucial to being an efficient advocate. By being objective and observant, you will discover sometimes unrecognized problems that are a priority. Learn to be our voice.
Learn to trust your instincts. Advocating for mental health is one thing. Being an autistic advocate is quite another. Knowing the difference will afford you some advantages that I had no awareness of back when I started in 2016. Advantages that I now value as essential. One of the most common skills an autistic person can naturally cultivate is pattern recognition. Since last year, I have reached my most important conclusions by using it.
As you gain more experience as an advocate, you are likely to recognize patterns of information about the autistic people you are advocating for. This can happen by being observant. If you find more than one autistic person with the exact same problem, not only could it be more common, but there is also primary source legitimacy in those patterns. Pattern recognition can help you identify complex support needs.
Learn to trust your memories. Another skill is our capacity for memory retention. Have you ever had someone criticize you for obsessing about your past? It is said that the past cannot tell you who you are, but cowering to such criticism can be a trap to neglect a valuable source of information. Memory retention can help us remember even distant memories. The more we can remember, the more we can discover about our authentic selves.
Our memories are also a vital part of coping with a late diagnosis as young as our mid-20s. Be cautious and prepared. Some repressed memories will unleash fierce trauma that can afflict your mental health. As a suicide attempt survivor, when I wrote my survival story in January 2020, I cried several times. Your past holds answers to many questions you may have. Use it to your advantage. Know thyself.
Be mature and civil as often as possible. We all have our days. As I said in my 2018 article on youth and adult bullying, “It matters how people are treated.” You will not always be able to think clearly or have a peaceful day. This time last year, I was not prepared to live with trauma that has now reduced my ability to function and maintain my mental health. My ability to work on writing is now much diminished.
We each have our challenges. Anyone that you are communicating with will also have theirs, including those who prefer to bully you. Whether you are in your teens, 20s, or older, try to set a positive example by being civil to one another. This will not be easy. I have been bullied by autistic people motivated by the need to be divisive. By being more mature, you will be able to focus on the actual problems that we need solutions to.
Everything happens for a reason. Life experiences such as trauma, anxiety, and suicide are caused by something specific that should not be overlooked or underestimated. The answers lay within each of us who are strong enough, prepared, and able to harness our skills for success. Think of my seemingly unrelated, diagnosed fear of time, chronophobia. Until September 2023, this was just another fear to be weary of, as it wrecked my life.
Thanks to everything I learned and trusting my instincts, I connected the pattern of chronophobia to my long-term lack of social and economic integration. These are two very serious problems caused by the long-term neglect of my autism. Here is what an autistic PhD lecturer had to say about my theory for it: “This puts into words what I’ve tried to figure out and explain in therapy for years!” Yeah. We can do this.
When I first learned that autism deeply influenced my life in 2022, I dreaded continuing to be an advocate. I feared making so many mistakes and miscommunications that I was nearly paralyzed by fear. I felt like the worst person who could possibly have to advocate for autism. I now know I am the perfect person to do this because I am a primary source. I know what this is like. And I am not alone. We know what this is like.
But we face a daunting task. It is 2024. In spite of well-meaning awareness efforts, autism acceptance is not where it needs to be. Neither do we have the economic support we need to integrate into society. You would be right to feel intimidated. In some ways, I still am. Through my experience, I have gained the confidence to face these challenges in spite of overwhelming odds. Choosing to act was an important decision.
Seven years ago, I started with no experience about what an advocate should be. All I knew was that I would likely relapse into suicide if I did nothing. I also had no one to guide me. So I started by exploring my local mental health volunteer community. This led me to secure the financial assistance I needed to apply for treatment. I then progressed onto published writing, blogging, presentation opportunities, and eventually podcasts.
The very least you can do while still benefiting the autism community is to be knowledgeable and supportive. Tell people what the objective facts are whenever you can. Education is the best remedy for autism stigma. Live by example. Show the world who we are by sharing your story. Be civil with autistic people to help foster cooperation. Advocating for autism is possible. We are the ones who should do it.
