To the Autism Community, From One of Your Newest Members
I’d like to introduce myself. My name is Lamar Hardwick. I am 37 years old. I am a husband, a father of three beautiful boys and a pastor of a church in Lagrange, Georgia.
Exactly one year ago I officially joined your community. Growing up I experienced many social challenges. I grew up in a military family so we moved around frequently while my father was fulfilling his duty to serve our country. Unfortunately for me, this often meant that some of my more obvious struggles went unnoticed. I grew up in an era and an environment when Asperger’s syndrome and autism wasn’t as recognizable, especially when you moved around quite a bit like my family did.
I am not complaining. I had great parents, teachers and siblings. I lived a fairly decent life, and I was able to form a few meaningful relationships, but I have always been autistic. I was born this way, and it wasn’t until a year ago that I learned the source of my life long struggle. A year ago I joined your community and as a result I believed I was joining your cause.
The past year has been both liberating and traumatic for me from one second to the next. It has been liberating because I finally received answers. In the last year I have poured my heart and soul into learning more about autism and learning more about myself. Social anxiety is something I have always struggled with and I am frightened at the idea of having to meet new people, so you can only imagine the angst of having to meet myself for the first time in 37 years. It is absolutely scary, but I love the process of finding myself and finding my voice in the autism community.
On the other side of the equation, my entry into the autism community has presented moments of trauma that are extremely difficult to recover from. The autism community is as vast as the autism spectrum itself. Navigating this community of common interests has proved to be something analogous to a minefield, where one must carefully consider each step they take for fear of being destroyed by members of the very community they seek approval and acceptance from.
I believe ours is a community riddled with conflict. We fight about terms, language and the diagnosis itself. Is Asperger’s syndrome autism? Can parents call themselves “autism parents?” Is it OK for adults to advocate for themselves? Which websites, blogs and journalism outlets support the autism community? Should we cure autism? Is autism a “gift?” What about functioning labels? Who determines who authenticates the validity of one’s personal experience with autism?
I will openly admit that I do not have the answer to these questions. I will admit that I do not understand all of the nuances of navigating these difficult and very serious discussions about autism. What I can tell you is that I am a part of your community. I want so desperately to be a part of your cause, but I believe ours is a community that has the potential to unintentionally eat our own young (and old, for that matter). In many ways our greatest challenge might be the inability to simply get along within our own community.
As a person who communicates for a living, I understand two things extremely well. I have invested countless hours of time in developing both the experience and education to understand and apply the power of the two most important elements of successfully navigating our shared human experience. Language and storytelling are how we develop the courage and conviction to build community and collectively overcome our common challenges.
What that means is that while we carry a myriad of experiences of life on the autism spectrum, our community must continue to challenge itself to make space for the communication of those narratives — without the need to compete with or critique the stories of the members of our beloved community.
I am new here, and while I am still learning how to find my place in our community, I must be completely honest when I say there are days when I want to quit. There are days when I believe the discussion within the autism community becomes so toxic that it temporarily makes me regret my decision to be diagnosed and to join the cause. And yet I find the courage and resolve to stay committed to the community and committed to the cause, because after all, we are family. Ours is a struggle that can and should bring us together, and I am praying with childlike naivety that our day will come — when we unite instead of divide so that together we can challenge the world to change for the better.
Dear autism community: I’m new here and I want to be here, but I’m learning that in order for me to survive I have to commit myself to cherishing your narrative as much as I cherish my own. I have to learn that my narrative is not necessarily normative, and I am inviting you to do the same. I will commit myself to advocating for adults with autism because our voice is needed and important. My advocacy is not an attempt to compare experiences; rather, it is an attempt to create environments that make space for our future autistic adults to have a voice. I will also commit to being sensitive about the language I use to describe my story. I am inviting you to do the same for the sake of our community.
To the parents of autistic children: I don’t claim to speak for you or your child. I recognize that I can advocate because I have the capacity to do so. It does not make me more special or gifted than your child who might not be able to speak for themselves. Neither does it give me the right to assume that your heart’s desire for your child to be relieved of their struggle by finding a cure is wrong or insulting to all autistic people. Your narrative is yours, and it is special and unique to your experience and I respect it, appreciate it and need to hear it to enhance my life. I am asking you to do the same.
To autistic adults: Keep sharing your narrative, but respect the narratives of others. Your story is important, so tell it to whoever will listen. But in the process, learn to listen and appreciate the stories of others. I believe ours is an assignment to leave a legacy of tolerance, acceptance and change, and I believe we can accomplish our goals without disenfranchising the generation we have a responsibility to empower for the future of our cause.
Dear autism community: I believe you are complicated, occasionally confrontational and mostly controversial, and although I’m new here and I sometimes I want to quit, please know that I am committed. Through the good, the bad and the ugly, I believe we can be a real community, we can be committed to each other and we can change the world. Let’s do it together. Let’s make a difference.
The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to firstname.lastname@example.org. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.