The Challenges of Writing Publically About Autism

I enjoy writing about autism. As a late-identified autistic, writing helps me to process my own thoughts and experiences. I like to write about my own experiences about autism and my evolving perspectives and opinions on autism.

I am also a therapist who now specializes in late-identified autism. I get a deep look into the interior world of other autistic adults. Not many autistics are lucky enough to get to know other autistics in such a profound way.

Many of my essays are inspired by the conversations I have with my clients - by the mutual challenges or joys we share, by unique questions they have, by insightful comments they make, etc.

In our culture, autism is having a moment. Thanks to the fresh perspective of neurodivergence, the explosion of social media, and autistic individuals speaking on behalf of autism, our understanding and conceptualization of autism is rapidly changing. I call it the Autistic Awakening. We are finally seeing the unique interior experience of autism and exploring what it means to see autism as a different neurotype, instead of a bothersome disorder (you can read more in “Autism is not a Disorder”).

It is an exciting time to be autistic. I enjoy contributing to the conversation. I know how confusing it was for me when I found out I was autism. I needed more clarity and couldn’t easily find it. So I’ve started creating it for myself and others.

"Writing in the Presence of Others" Watercolor illustration by Jackie Schuld. This illustration was originally made for my book "Grief is a Mess"

My essays help me sort through the deluge of information to help me make sense of it all. I focus on writing about late-identified autism since that is the locus of my experience. Furthermore, autism is such a wide spectrum that I cannot possibly capture all aspects of it. I prefer to speak to the areas in which I am personally and professionally knowledgeable.

It is my hope that my essays provide clarity and self-understanding for the individuals who read them. I also understand that given my narrow niche within autism, they will not resonate with everyone.

However, I still find it challenging when individuals I do not know want to challenge or discuss my essays through comments or email. It’s challenging for multiple reasons.

1. I genuinely care and want to have these discussions

2. Most individuals who comment are responding to one essay they read. One essay is limited in scope and I cannot possibly address all of the exceptions and caveats to the perspectives I present. It’s tempting to tack a disclaimer onto every essay: I understand autism is a spectrum. In this essay I am focusing on one part of that spectrum. This does not mean I negate or deny other experiences of autism. I do not add such an addendum because I do not want to write and live in the space of defense.

3. It is difficult to dialogue with someone I do not know, especially when it is on a sensitive, important topic.

4. Sometimes the response to an individual’s comment, question, or challenge already exists in one of my other essays. I do not want to use my limited energy repeating myself.

5. It is difficult to have a fruitful discussion where both parties feel heard through written material. I would much prefer to sit down and have a verbal conversation about these topics than try to write “at” each other. I want to talk “with” a person.

6. I cannot read people well enough through writing alone to pick up on important aspects like tone and mood. I do not know how the individual is feeling. It can be difficult to know how to interpret their words. It can also feel unsafe for me, if I am not sure if they are angry or simply wanting a neutral conversation.

7. I do not have the time to respond to every comment

These concerns exist IN CONJUNCTION with the positives

1. I feel encouraged when someone lets me know my essay resonated with me

2. Sometimes I am inspired or intrigued by someone’s questions or unique comments. They help me to dive deeper and write new essay

3. Sometimes individuals share new material or perspectives that enrich me, and I deeply appreciate that and enjoy it

4. I write to connect with others. I do want to connect.

I’m not living in one reality (the positives) or the other (the challenges). I am living in a mix of both. It is similar to being autistic - there are parts I love and parts I find challenging. Also similar to autism, the more I learn and experience, the easier it becomes to navigate.

There is also a level of acceptance I have to have. Even if I did write clear, loquacious responses to every comment, it would not guarantee that people will understand or appreciate it. I have to accept that people will have their own thoughts and emotional responses to my writing that I have absolutely no control over. I also have to accept that I am a person with limited energy. I have to prioritize where I put my energy. Sometimes that means not responding to comments or emails. It doesn’t feel good, but I have to honor my needs too.

It’s the same lesson I learn with autism over and over. That my needs matter and it is far better to acknowledge and honor them. The opposite would mean getting burnt out.

I do not want to burn out of writing. I don’t want to stop sharing my essays simply because I cannot keep up with responding to comments or dialoguing with every person who reaches out.

I contribute and be present where I can and accept there are limitations.

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