My dad used to tell me there was a right way and a wrong way to do things. Invariably, life has proven him correct, as I have seen time and again through personal experience. Both of my parents worked their hardest and tried their best to raise me. As many parents know, life does not come with a manual on how to do it right. Oh, how I know that we wish it did in general. After being diagnosed for nearly three years, it took me only one month to commit to advocating for autism.
One of the reasons is because I know how rough life can be. I am also well aware that it is not just hard for me. It is very clear how people’s lives and livelihoods are at stake. So, I foresee some important decisions I have to make. If I am going to lead a call to action movement for every autistic person, it matters to millions of people how well and how I do it. Otherwise, I may do more harm than good. For me, at age 41, failure is not an option.
For six years, I have advocated for mental health through volunteer work and published writing. During this time, referring to myself as an advocate has been objectively questioned. To assert that I am now leading a call to action movement does necessitate an honest evaluation. It was once said to me that everyone can be an advocate for mental health. This is true. What are my motivations for claiming to be an advocate? Am I seeking to strengthen myself with confidence, or do I have legitimacy?
I took to calling myself a mental health advocate because, from the very beginning, I intended to do more than claim a title or receive certain annual awards for it. In fact, I have a saying: “Build a statue for someone else; I just want to save lives.” Keep the accolades. I respect awards but would rather be actively and productively helping people. I have seen too much suffering to be satisfied with the least someone can do.
My mother’s family lost a son, a brother, and, to those who knew him, a dear friend at age 20. In elementary school, a tornado struck nearby, killing the occupants of a vehicle. Flood waters killed a former classmate who drowned as he tried to walk home. My entire freshman class mourned the loss of one of our own to suicide. We later mourned the loss of another as seniors before graduation. The losses of classmates, whether to car accidents, drug addiction, or cancer, have drawn many a tear since then.
This is not taking into account my suicide attempt, three acts of suicide furtherance, years of untreated severe depression, undiagnosed schizotypal personality disorder, or the long-term effects of masking that created a neurodivergent identity crisis. Knowing what these issues are like always compels me to do more than I am capable of. However, there is a reason why it is said that a person can do more harm than good.
In the past, I have attempted to help people because I was driven to do so by the adversity in my life. Indeed, empathy can be a powerful motivator. Unfortunately, instead of helping, I unintentionally alienated some of them. Offense was taken, and feelings were hurt on both sides of what happened. My reputation has suffered an unknown amount of damage. Their trust in me has been shaken enough for them to view me with concern or exclusion.
I have been asked very little about the impact on my mental health because some people do not want to talk about it. They may feel ashamed or be convinced only I was at fault. The fact is, autistic communication issues cannot be resolved if we do not talk about them. Leading a movement also means that my views and actions are being carefully evaluated. We as autistic people must face the problems with integrating into society if we are to find solutions. I will go first to demonstrate my faults.
Taking responsibility for your actions is regarded by many in today’s society as essential. I share the same belief. In the past, with certain people, I have shared how I felt while believing I could trust them. For example, after a meeting, I confided in someone about a mild habit of self-harm. Then, without stopping to think, I took off my glasses and mimicked scratching my face. It was probably not well received by the other person, who was not a counselor. In another instance, I patiently waited four weeks for a decision involving an event.
When I was informed via email, I made it clear that I accepted their decision to decline. I then criticized them for how prejudiced I believed they were toward me because of my mental health. In my defense, I made no threats and was not at all violent. Nevertheless, I did not hold back with my criticism. As a result, being so unfiltered made them overreact and exclude me from all future meetings.
In these instances where I advocated for mental health, did I do more harm than good? Absolutely. Was my autistic behavior responsible? Yes. So, if I intend to lead a movement, I cannot ignore or entirely excuse my actions. I must accept some responsibility, at the very least, because if this is not addressed, it will happen again. Consider my perspective, though. Autism affects me at such a basic neurological level that, before diagnosis, I was not aware of it and had been unable to adapt my social skills.
I needed to know I was autistic to adjust. Every time I am in public, I maintain a reputation for being non-violent. Mental health stigma is also actively discouraged. Why then was I treated like a criminal by having a meeting moved without asking me to clarify my remarks first? This is an inexcusable reaction indicative of stigma. Those with authority or influence are not exempt from accountability, including if they truthfully overreact.
Accepting responsibility is a two-way street, but it is not easy for us to achieve.
I have tried to reconcile with some of the people I have had prior issues with. They know there is no need to hate or fear me because I am autistic. I am very grateful for these opportunities to make amends and improve awareness. However, it is increasingly documented that autistic people are being taken advantage of. Should our psychology be accepted as fact? Yes. Should everyone take responsibility for their actions? Absolutely.
Twice, after being legitimately discriminated against, I was pushed to a breaking point, nearly resulting in suicide attempts. These endangered my life and occurred before I had effective treatment. Without having a good social standing or acceptance, I was powerless and easily condemned. By discussing these issues, you will see the next important decision I, as a leader, feel needs to be addressed.
No one should be left behind.
If autistic communication issues are not satisfactorily resolved, an important segment of society, those who are not autistic, may be discouraged from supporting us. Some of us may lack trust in them or be wary of organizations like Autism Speaks, Inc. I feel the same way. Our prosperity and safety have suffered in years past. On the other hand, those who are not autistic may not understand us yet or still feel intimidated. I certainly recognize this as well.
If I abandon trying to cooperate and work together with non-autistic people, then there will be a lot less support for autism in society. Eventually, it will result in a lower chance for success and safety. This is neither logical nor acceptable to me. How I have learned this lesson is beneficial to explain. A certain national movement has achieved a modest amount of success. However, by using arguably manipulative tactics, they have alienated sizable populations around the world.
Free will is an unavoidable slippery slope when it comes to the success of a movement. Simply put, no one has to accept that I am autistic, nor does anyone have to help or care. You cannot logically expect to force your will on someone and not expect an opposing reaction. It is human nature to resist when subjected to intimidation or force. This will never change. The movement in question, which I will abstain from naming, has done this in a number of different ways and places, affecting a wide demographic of people.
Unfortunately, some have embraced intolerance. I take the fallout of this approach seriously because, in my opinion, I believe their success is now declining and will not improve much. So, I will not make the same mistake with us. Neither should anyone else if they are part of a serious movement seeking societal changes. Too many people’s lives and livelihoods are at stake to risk alienating anyone who could help.
Since I learned about the Holocaust in elementary school and the Civil Rights era in junior high, it has not escaped my notice how many people face adversity in life. Many still do so on a daily basis, such as with stress, losing loved ones, alcoholism, and addiction. I hear you. What about economic hardship? There are numerous religious and nonreligious denominations. How many members of the LGBT community died at the 2016 Pulse nightclub shooting?
What about cancer victims and survivors, military troops with post-traumatic stress disorder, first responders who have a heightened risk of suicide, sex trafficking victims, child and domestic abuse survivors, or the tireless caregivers in 2020 — either of whom could involve or influence the autism community. The more people who genuinely support us, the better our chances will be for change.
However, I anticipate something more important than acceptance: pragmatism.
Throughout the last six years of advocating for mental health, I have observed a problem with awareness campaigns and achieving results. For example, the narrative strength for suicide prevention dissipates after two or three weeks. The reason for this is that the best firsthand experience comes from the person who lives through it and survives. With autism, the legitimate voice for firsthand experience and change comes from those of us who live with it. I realized this thanks to having previously done a capstone undergraduate thesis.
In terms of formal research used by mental health professionals, we are a primary source whose insight should be used. I have seen a growing number of intuitive and articulate autistic people advocating for change. There is just one problem: we have no unified voice despite an abundance of non-profit organizations. Public awareness is not enough. We need results. How can we accomplish this?
Between 2018 and 2020, I had five mental health articles published to raise awareness. In one month, they were buried by newer writing, thereby diminishing the effect of my insight. Social media’s censorship and algorithms did not otherwise help me share my writing. I realized I was getting nowhere with achieving progress. So, this time with autism, the logical course of action is clearer.
Go directly to the source of mental health study and practice: care providers, funding agencies, and universities — the very doctors and administrators whose service generates our mental health care.
This approach is not necessarily easier, but it is more effective than relying on public awareness, and I do not have to be the only one leading the effort. If enough of us go to the source, with our firsthand autism experience, we can create change more directly. The more who do, the better the research. Why me, though? Why now? Why am I doing this?
“A leader leads. They don’t walk away when someone needs help.”
I am taking responsibility for my actions because it is the right thing to do. I am discussing the importance of accountability because it needs to happen. I am doing more to actively help boost the autism community’s chances for acceptance and resource needs because we need them for all ages. I have given my autism presentation to my mental healthcare provider and a local Taskforce for Education in the region where I live.
I already have favorable chances of presenting it to other mental health professionals and practitioners next year. I will not stop because I have seen enough divisiveness and suffering. Living through suicide, depression, and anxiety changes people. Living for 41 years without knowing who I really am has changed me. Now, I know. I am still here too. So, I choose to put myself on the line to make sure everyone else has a chance.
I know I am not an ideal person to lead a movement, let alone one of this magnitude. Before I was diagnosed or understood autism, my behavior alienated people who could have helped me. Some overreacted and should have known better. Now, I have taken responsibility for my actions because I understand my mental health. My experience means nothing unless it can be applied where it will have the greatest effect. Mental health professionals determine our care and, eventually, the legitimacy of our acceptance.
We need to work together and not be divided or indifferent. The more people who do so, the better our chance for success will be. Think of Osaze Osagie, a nonverbal autistic adult who should still be here. If you’re going to do it, do it right. I have my parents to thank for this wisdom, and I am very grateful to have them. I choose to be a leader because our future depends on what I can do today.
I volunteer. Will you?
