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Day 102

Updated: Jun 26, 2019

People have this need for their lives to have meaning. They want the fact that they exist to matter. I think it is an underlying motivation in great works of art, ingenuity, and the creation of children.

The truest way to leave a legacy is to be a loving parent. If you’re lucky, your child will be blessed with children and someday you get the privilege of being a loving grandparent.

Constance didn’t get a chance to be an adult, or a parent, or a grandparent. She didn’t get to be an artist, or a builder, or a lifeguard, or anything but a young child. I ask myself, what legacy did she leave? Certainly, anyone lucky enough to know her remembers her fondly. But those memories would be better if they weren’t cut tragically short.

In my professional life, one project inspired by Constance comes to mind. I have been fortunate enough to have done many things I am very proud of over the course of my career but this one was because of Constance.

In 2015, a man with an autism spectrum disorder was publicly humiliated by his employer. He subsequently died by suicide. This news deeply disturbed Constance's father so he told me about it. At the time, I was working for the American Foundation for Suicide Prevention (AFSP). Then, one of the primary things AFSP did exceptionally well was to fund research into suicide prevention. The secondary thing AFSP excelled at was educating the public on that research. This involved things like raising awareness about what a mental health crisis looks like and what to do if you notice or experience one. AFSP didn’t have any suicide prevention materials specifically targeting individuals on the spectrum and their circle of care. The steps it took to get a single educational flyer made were very long and complex. To summarize, months of work: a proposal, surveys to justify the project, proposal presentation and approvals, research reviews, many drafts and rounds of approval, passionate arguments about everything from syntax to triggering, coordination with designers, execution by printers, and distribution by local chapters.

When the educational material was published, I shared it with those who completed the survey, my contacts in the autism spectrum disorder and special needs community, and anyone who was interested at AFSP’s events in Illinois. AFSP chapters across the country provided it to their local communities as well.

As a non-scientist, I would summarize it as this: when you have an autism spectrum disorder, you don’t express your feelings in the same way others do. Often times, that is mistaken by neurologically typical people as indifference or apathy. In truth, people with autism spectrum disorders tend to be more sensitive than neurologically typical people; they just express it differently. As a result, people on the spectrum are more prone to being the victims of bullying, exclusion, and harm but less likely to have their mental health needs correctly identified and supported. It’s a scary problem.

After the project was completed, AFSP’s then director of research thanked me for bringing this issue to their attention. She noted that there wasn’t nearly enough research in this area and said it would be something that the national research committee kept their eyes open for opportunities to fund research into. This research is challenging due to the cost and pollution limitations. This was particularly good news because AFSP is very skilled at funding small research projects that got legs and became large federally funded projects. I felt like, with Constance as our muse, we’d really accomplished something meaningful.

A year after leaving AFSP but before Constance passed, I received a text message from a colleague there. It was a photo of the educational sheet on autism and suicide prevention and the words, “Thinking about the huge impact you had on AFSP. 😀” I was having what I used to consider a bad day but would not describe as a miraculously good one. Her text cheered me up and I told her so.

When reflecting on how Constance’s life has mattered, I would think of that stupid sheet of paper and cling to it with the hope it helped someone. I went to AFSP’s website to search for it so I could include a link to it in the post and discovered that it was removed during the site’s rebranding. While weeping, I alerted them to the issue. If it’s added again in the future, I will post a link to it in the comment section below. As of this writing, there are currently no research projects into autism spectrum disorders and suicide listed on the website. I folded my head into a pillow and cried, “You’re so stupid,” over and over again at my incredible naivety. It is shocking, the teeny-tiny things we hold onto when we have nothing. I wanted a sheet of paper to make me feel like Constance's life helped someone get through their days. Now with her gone, I know, she helped me get through mine.

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If you are in crisis please call the suicide prevention lifeline at 1-800-273-8255. It is always free and available.


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