Stephanie Allen Crist is an author and a poet. She married Mark F. Crist when she was 18 and gained a step-son, whom they shared with his mother. Together, Mark and Stephanie had three more boys, all of whom received diagnoses of autism.

While doing the hard work of raising four boys, including three with significant disabilities, Stephanie attended Herzing University online and graduated Summa Cum Laude with a degree in Business Administration. She launched Purple Pen Writing Services, a marketing and editing business, which she made profitable within its first six months of operation.

While continuing to raise her boys and operate her business, Stephanie attended National Louis University and earned a graduate degree in Written Communications. She wrote and self-published two books: Discovering Autism / Discovering Neurodiversity: A Memoir and First Steps: Understanding Autism.

Stephanie advocated for a neurodiversity-focused approach to autism for several years before publishing her books. Throughout her advocacy efforts, Stephanie encouraged an inclusive definition of neurodiversity that recognized and valued the wide variety of neurological differences found among human beings, rather than reserving the term for the exclusive use of autistic self-advocates. However, by the time her books were published, a new trend was emerging within the neurodiversity movement.

Instead of moving towards inclusion, a growing number of neurodiversity advocates used the term to argue in favor of autistic superiority. By doing so, not only did they exclude the non-autistic neurologically diverse, these advocates also excluded autists with significant disabilities. This, of course, included Stephanie’s children. The open hostility these advocates demonstrated towards those they derisively called “neurotypical,” by which they meant non-autistic, became a dominant theme within the neurodiversity movement.

Undaunted by this unexpected shift away from inclusion, Stephanie applied and was accepted into Rutgers University’s online Public Administration and Non-Profit Management graduate program. She intended to become qualified to start her own inclusive neurodiversity non-profit organization. The coursework was challenging, yet Stephanie excelled within the program while continuing to raise her children, run her business, and market her books.

Within this program, she studied key aspects of the history of public administration that revealed some of the many mistakes frequently made within the field. Stephanie gleaned many insights that shifted her focus to smaller and smaller units. She realized that the most good anyone could do—either as an individual or as an organization—was to empower the individual. The problem was that nobody knew how to do that sustainably, on a large scale, without disempowering others. Many teachers had tried to teach humanity how to do so, but none of them had managed to convince us to sustain the effort.

These discoveries inspired Stephanie to dig more deeply into the history of human rights advocacy movements. She wanted to understand where the neurodiversity movement had gone wrong and why. More importantly, she wanted to understand why so much of the change so many people so desperately needed never really materialized despite decades of concerted effort to create that change.

Stephanie learned that the shift-away from inclusion towards a more exclusive, self-interested form of advocacy was actually quite typical among human rights movements. Contrary to Stephanie’s expectation, successful human rights movements frequently devolved into competing groups, often with the most dominant group using their newly acquired power to oppress others. While many of these movements continue to make essential strides towards inclusive equality, their history of retaliatory oppression is often used to reject their efforts.

Disillusioned and discouraged, Stephanie tried to press on to find how to fit these disparate pieces together, but she soon faced a new obstacle to her goals: Fibromyalgia. Stephanie had anticipated a diagnosis of fibromyalgia for years. Not only was it particularly common among mothers of multiple children with autism, but Stephanie had been experiencing flare-ups of otherwise unexplained pain. The pain didn’t slow Stephanie down enough to see a doctor, however pain is not the only symptom of fibromyalgia.

It should come as no surprise that excelling in graduate school requires a lot of reading. Stephanie usually enjoyed this aspect of her studies. She often read her coursework late at night, when everyone else was asleep, so she could focus without distractions. After one particularly challenging day, she discovered that she’d spent the last hour reading the same page over and over again—and she still could not remember what it said. Hoping she was just tired, Stephanie went to bed. But her morning scripture studies were just as fruitless.

For someone whose life’s work involved reading, retaining information, and writing about what she’d read, “fibro fog” seemed like a particularly cruel cosmic prank. Stephanie struggled to carry on with her activities, but that proved impossible. She put her new writing projects on hold. She turned down projects from prospective clients. But it wasn’t enough. Stephanie had to drop out of the Rutgers University graduate program. This was meant to be temporary, but Stephanie’s deterioration continued. Before she knew it, she was diagnosed with diabetes as well. These two conditions exacerbated each other. Eventually, Stephanie shuttered her business operations to focus on her health.

Stephanie did not excel at self-care the way she’d excelled at caring for her children, so the losses kept coming. The worst one yet was the loss of their home of 16 years to foreclosure. That was October of 2019. Everything Stephanie had thus far endured did not prepare her for what was coming next.

Immediately after losing their home to foreclosure, Stephanie and her family moved in with her mother. This arrangement did not work well for any of them. Mark left after a week. Stephanie secured the first rental unit she could find that was adequate for their needs. It was a third of the space they’d had before, but they were all together. Slowly, they started reestablishing a sense of normalcy.

The Covid-19 Pandemic put “normal” on an indefinite hold. Mark worked at Walgreens, which made him an essential worker. The state of Wisconsin was paying Stephanie to take care of her autistic children now that they were adults. With the help of the economic relief dispersals, their financial situation improved dramatically. But all the support services her boys relied on to provide them with the routines they needed to thrive evaporated overnight because of the stay-at-home orders. Stephanie continued to make strides towards improving her self-care strategies, which helped her and her family to endure these tumultuous times, but her progress felt very slow. The best she could do often seemed like it was too little too late.

With the help of a new respite worker, one of Stephanie’s sons discovered the abundance of hiking trails available in their city. Hitting the trails quickly became a new favorite family pastime. Stephanie’s progress towards healthier habits took a major leap forward. In a relatively short time, Stephanie worked her way up to walking four miles a day.

Stephanie’s inguinal hernia became partially strangled, requiring urgent surgery. The operation went well. The first week of her recovery progressed nicely. This changed overnight. Suddenly, Stephanie felt sick enough to go to the emergency room. After testing her for covid, they admitted her into the hospital. Stephanie had developed a life-threatening post-op- infection. They kept her in the hospital for a week, hooked up to an IV of heavy-duty antibiotics. She endured a second surgery to clean out the infected tissue halfway through her hospital stay.

This experience became the catalyst that inspired Stephanie to embrace her own worth, independent of any service she performed for others. Self-care was no longer simply a means to an end. Caring for herself had value all on its own. This discovery led to a paradigm shift that is still unfolding. Now, Stephanie invites you to share in her journey as she rebuilds her platform, so she can share the lessons she’s learned. You can start here.