DEPARTMENT OF DEFENSE - CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS
Debbie Zelman
Lori Hogenkamp

Growing up having autism (but not knowing it!) impacted my life in many ways. Back in those days, in the small town where we lived, others described me as “book smart and street dumb.” My loving and protective father would often describe me as having “no common sense whatsoever.” Many of my autism-related problems were dismissed as character issues of choice, such as not paying enough attention, talking too much, thinking too much, trying too hard, not listening, and worrying too much. I was often told to just be myself or trust my gut, which left me wondering, which voice was that? While each individual’s experience with autism is different, my experience was receiving too much information. I was often overwhelmed by stimulation from the environment, such as lights, noise, and social interaction. Having too much information from my social environment left me perplexed, because while we were experiencing the same world, my world was much more vibrant and very different from my peers’. While I did have caring classmates who eventually adopted, guided, and included me, I never quite fit in socially. I stood out in my classwork too, because with all that information and my love of seeing patterns and making connections, I excelled in math, science, and music. I could pass just about any class on any subject except for the “easy” courses like English and sociology. What everyone else could understand so easily, was an impossible world of confusion for me.

My goal as an autism advocate is to transform our view of autism to a stress adaptation rather than seeing it as a disorder. Viewing autism as a stress adaptation has the potential to clear up many controversies. It would also explain my amplified experiences and the pervasive nature of how this early, or pre-life, stress re-wired my brain. Seeing autism as a stress adaptation changed the approach I took to balancing my behaviors. Instead of seeing them as character flaws to be admonished, I found ways to balance my stress, learn cues I had been missing, nurture my sensory needs, and build my stress resilience. Furthermore, this new view of autism as a “stress model” will likely lend scientists and researchers insight into what seems to be a vast amount of impossibly confusing evidence.

The specific combination of triggers that create an autism stress adaptation are likely different for everyone. But there is hope that, if some of those triggers can be controlled for or have their programming reversed, it would drastically improve the quality of life for individuals with autism. It is also my hope that, with autism considered a stress adaptation, we will see that many of the symptoms, such as stimming or the need for routine, can be used to manage stress. The accommodations that those of us with autism ask for during work or socialization are things we need to help us manage the intensity of our worlds. It was my pursuit of this scientific shift in thinking that influenced my decision to become a board member for the Ken Anderson Alliance (KAA).

The KAA’s goal is to construct live-work-play communities that will provide a setting where adults with developmental disabilities, such as autism, can realize their full potential in a safe, affordable, caring, integrated, and supportive environment. The alliance seeks to provide residents with a comfortable transition from living with loved ones to building a new life of their own. From my perspective, this type of endeavor can provide the critical type of quality-of-life care that adults with autism need to thrive.

The roles of researchers and doctors in treating autism is of critical importance. They have successfully reversed some of the negative symptoms through pharmaceuticals and behavioral interventions, and more interventions are beginning to show even greater progress. In that pursuit, I would contend that nurturing and optimizing autism is of equal importance. This includes an environment of social support and enrichment that comes from the community. In my perspective of autism as a stress adaptation, decreasing stress, building stress resilience through challenges, and creating enriching and supportive environments are vital. Improving stress resilience should be a foundational pursuit of all autism therapies and supports. Children and adults with autism cannot accomplish the type of physical, emotional, mental health and well-being, quality-of-life improvements without support, safety, acceptance, and independence. This is the goal of work-live-play communities. Having intentional communities like these could vastly improve and reduce stress for the most vulnerable of this population. Creating community living spaces for adults to retreat to for safety—but venture out from for support and engagement—is an important part of that evolved culture we at the KAA are hoping to accomplish.

I was honored to represent KAA on FY2017 Autism Research Program (ARP) peer review research panel as an autistic adult consumer advocate. My experience with the ARP from the Department of Defense’s Congressionally Directed Medical Research Programs has been tremendous. From the staff accommodations (noise, foods, lights, breaks, seating) to the scientists’ active engagement, it is clear that they want to understand the views of people with autism and what autistics hope to gain from research.

Improving our immediate quality of life is high on the autism community’s list of goals. The ARP heard this, which was reflected in this past year’s funding application submissions and directed conversations. The views on autism are changing and moving away from seeking cures or a single cause. The conversations are becoming more nuanced, and the heterogeneity of autism needs are slowly being met. Views on autism, along with many other neurodiversity disorders (or neuroadaptations), are shifting toward acceptance, nurturing, and working with the body and the person instead of relying solely on punishment and pills. It is an exciting evolution, and I was happy to see ARP’s mission for innovation, groundbreaking techniques, and its philosophy reflecting this. This organization has impressed me and impressed upon me their commitment to including and advancing the conversations and cooperative endeavors between the scientists and the community their work is meant to serve.

Last updated Monday, April 2, 2018