Interview: Jess Wilson

This week, Neurodiversity News has interviewed Jess Wilson, who is the blogger for the page, Diary of a Mom.

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Neurodiversity News: Tell me about yourself and what you do.

 Jess Wilson: I’m Jess, better known as the mom behind Diary of a Mom. I am married to a pretty fabulous guy named Luau and together we have two incredible daughters: Katie, who is a sophomore in college, and Brooke, who is a senior in high school.

While I recently took the original blog, which I’d started in 2008, largely offline, I still maintain the Diary of a Mom Facebook page, hosting a vibrant and fabulously diverse community of over 330,000 people who inspire me every day to make this world a more open, accepting, and accessible place for everyone in it.

As for my brick-and-mortar world, I worked as an equity trader for over twenty years and Luau stayed home with our girls. In recent years, we’ve switched roles and I’ve been lucky enough to have been at home while he’s pursued his calling to become the English teacher that we all wish we could have had in high school. Since the beginning of the pandemic, I’ve been working closely with Brooke’s support team to make remote schooling accessible to her, essentially acting as a de-facto aide for her Zoom classes. It’s definitely not what any of us expected to be doing, but I’m very grateful that I could be here to help.

NN: Based on your blog, you used to support Autism Speaks. What got you to leave them and eventually support ASAN instead?

JW: When our daughter was first identified as autistic back in 2006, I began a desperate search for help, resources, a sense that we weren’t alone. I landed, as most of us did back then, on Autism Speaks. With their deep pockets and vast marketing machine, they were far more visible than anyone else.

AS appealed to parents because they were made up of parents, and they provided a channel for the fear and angst that so many of us felt upon learning that our children were disabled. They taught us to “fight” autism, and to recruit as many people as we could, raising as much money as we could, to do the same. It took me a few years, and the help of autistic adults, to realize that “fighting autism” was fighting my child. That separating her neurology from who she was simply wasn’t a thing that could be done. That demonizing this huge part of her identity was ultimately demonizing HER.

I tried desperately to continue to work with them because I believed that I could help affect change – that I could convince them to listen to autistic voices, to center their experiences in their advocacy, to shift their focus away from “cure” and toward helping autistic people to live fuller, richer lives. I stuck around through two changes of leadership, pleading for robust autistic representation on their boards and for an alignment of their goals with those of organizations like ASAN and AWN, who were focused on policy initiatives and goals like encouraging innovation in assistive technology, advocating for equal opportunities in education and employment, fighting for safe, supported community living, and changing the culture of ableism and ignorance that is the biggest challenge in achieving any of the above.

After years with very little headway, I finally decided to focus my time amplifying the voices of autistic and otherwise disabled people and doing what I could to directly support their efforts.

NN: You’ve also talked about how your understanding of autism has evolved. Could you tell me how it’s evolved, and how it’s affected your relationship with your daughter?

JW: On of the hardest stories for me to share is probably one of the most important. A few years ago, I wrote the following:

When Brooke was a toddler, we were desperate for help. All that we (thought) we knew was that we didn’t know anything. And that’s a pretty scary place to be. And it made us vulnerable to taking advice that, under any other circumstances, would likely have made us run in the other direction. After all these years and a lot of advice, I’m here to say that if something feels wrong, it probably is. Run in the other direction. Fast. But we didn’t know that yet.

The first professional that we had come to the house for Brooke was a speech therapist. Overall, she was wonderful. She knew within a minute and a half of meeting then three-year-old Brooke that she was autistic. She taught us how to engage with her in what she was doing rather than insisting that she engage with us in what we thought she should be doing. It was brilliantly simple and paradigm-shatteringly helpful.

And then she told us what we needed to do to encourage eye contact.

(Readers, please don’t do this. For the love of all things holy, don’t do this.)

She taught us to take whatever it was that we knew that Brooke wanted – something that she was reaching for or whatever we knew by virtue of pattern recognition that she would be looking for next – and to hold it up next to our eyes.

(Seriously, I’m begging you, do not do this.)

She taught us to force our child to do something overwhelming and uncomfortable to the point of physical pain to get the thing that she wanted.

And we did it. We held hostage the things that I knew my daughter wanted (long before she had the words to verbally protest) and I made her do something that served no purpose — would serve no purpose – other than to make her appear less like who she is – to get it.

I don’t know how long it took until we stopped. Until we realized the absurdity, the futility, the abuse inherent in what we were doing. But we stopped. And then we began to work to earn back the trust that we had broken.

It wasn’t until I began to read the words of autistic adults that I could really even start to understand the layers of ableism inherent in our early attempts to “help” our kid. They taught me about the beauty of the autistic experience, even within the inextricable context of its challenges – some internal and many more attributable to and/or exacerbated by neurotypical expectation. Years later I would write:

“There was nothing more liberating for me than laying down my arms and walking away from the fight against difference. There has been nothing more fulfilling than whole-heartedly accepting myself and those I love for exactly what and who we are rather than despite what we’re not, or because of who we may someday become.

Because it was then that we all discovered the joy that comes from supporting one another as we strive, not toward the folly of indistinguishability from the masses, but toward the glory of becoming our very best selves.

I choose acceptance. This is why.”

NN: How have you, Brooke, and the family been doing during the pandemic anyway?

JW: We’ve been hanging in. My girls have missed out on a lot and it hasn’t been easy on either of them, but we have a roof over our heads and food in the pantry and I am keenly aware of how lucky we are right now.

NN: Who are your greatest inspirations?

JW: Without question, my girls. Their resilience and humor and willingness to wrap their arms around a damaged, angry world that can sometimes be really damned hard to love… it’s everything.

NN: What do you hope to achieve in the future?

JW: I don’t think I’ve imagined it yet. For now, my goal is to continue to work in community with those who share a fire in the belly to disrupt, dismantle, and upend the toxic systems so long ago built on bigotry and fear and to rebuild them together on a solid foundation of loud, messy, brave love.

I want to leave my girls a world that welcomes and encourages them – and everyone – to be the best versions they can possibly be, of exactly who they are.