Autism Research as Validation of Lived Experience

I found my husband's body in our garage; it was June 24, 2015. He had killed himself several days before. What I remember piercingly is the smell. My brain would not accept what my senses were telling me. I was a widow. Alone in a world I did not understand, where I had never belonged, feeling crushed beyond what I could handle myself.

I am autistic, and for many who carry this label, social situations prove challenging. Death, you might say, especially suicide, is the ultimate social situation, and it requires the skills of a poet and a seasoned bureaucrat in real time, skills that I did not possess. The social scripts of death eluded me. Everyone else seemed to know how the play would unfold. Where were my stage directions?

I was grieving the deepest of losses, and yet I had to make arrangements for my husband's body, I had to organize a funeral, I had to biochemically clean my home and put it on the market, and I had to begin the process of executing an estate, which required meeting with all manner of professionals—each of them a stranger. Stigma appeared, like a phantom, in every conversation, and yet I had to be poised, or at least relatively so.

The sense of exposure was unbearable. I felt like the proverbial sitting duck within the sights of those who wanted something from me. Although I tried my best, I was never fast enough, my knowledge never sufficient enough, my experience always lacking. Progress was slow because my learning curve was so steep. Just as in my early years growing up autistic, no one took the time to investigate past the labels of laziness or indifference to find the actual cause of behavior they deemed inadequate.

And the immediate tasks were just the beginning. As an autistic adult, I also did not know how, when, where, or even whom to reach out to for help. At times there were too many people to choose from; at other times, no one. I was just as bewildered by the people who claimed to “love me” upon first meeting as I was by the people who knew me and yet ignored me.

Through it all, my true struggles went unnoticed. Change consumed me. I spent most of my time trying to regain a sense of routine, longing for the comfort of a mundane life, as unexpected circumstances became the norm. As I searched for routine, I realized the only thing I could consistently rely on was change.

Without the old norm, my senses went berserk. It was as if I were a soldier and my neurons were exploding under friendly fire. Any smell even remotely similar to the night I found my husband sent me firmly back in time, as though tumbling down a dark staircase. My sensory issues threatened to undermine whatever resolve I could muster. Touch was unbearable. My skin felt as if bugs were crawling on it—crawling all over my hyperactive nervous system. I fervently sought sleep as a relief from such sensation, but sleep only awakened the nightmares.

Each new day brought extremes of grace and brutality. A card from a friend, or even a smile from a stranger, took the edge off bad news from the insurance company or an angry call from a creditor. Social communication was a verbal minefield: each word placed cautiously into a conversation, hoping it did not blow up. I never knew which way any social interaction would go. So, I withdrew from everyone and everything.

Typically, my relationships develop slowly and carefully over time. I had put a substantial amount of effort into several friendships in the years leading up to my husband's suicide. I was told we were like family, which I understood in a literal manner. All but one of the relationships died with my husband—those losses cut deeply. I did not have the energy or the will to begin new friendships. Although kind, caring people came into my life through church and my neighborhood, it was as if we were all actors saying memorized lines on cue.

The problem with the people who tried to support me is this: they made no allowance for autism. They simply acted as if I were a grieving neurotypical person.

They did not understand why I was not responding to their care. I did not recognize their efforts as support because I felt completely misunderstood. Imagine having an injury such as a badly broken leg and being invited to exercise! To be fair, I was not able to tell them why I continued to struggle because I did not fully understand it myself. I had been diagnosed with autism only 5 years before my husband's suicide, and that period of time had been consumed by our shared struggles with his mental illness.

What finally helped was research. By research, I mean studies that explained my way of thinking, my hypersenses, and my relationship complications. For example, a study from 2013 explored subtypes in autism, underscoring its heterogeneous presentation.¹ It is quite possible that my own belated diagnosis was due to a rigid and homogenized conception of autism. A study from 2018 focused on quality of life for autistic people, and it offered recommendations for improvement.²

I began feeling hopeful about passing on my new understanding of autism to the people in my life who were supporting me. A few listened, and I enjoyed the relational growth of understanding and acceptance. The rest faded away, departing to that mysterious place where many relationships in my life have gone, never to be heard from again.

So began the awareness of my autistic self. I realized I was not broken. I was whole, worthy, and able. My apparent “lack” of understanding was actually a different way of thinking, as a study from 2010 made clear.³ As I learned more about autism, I accepted the way I thought and processed information. I still struggled with all that went into executing my husband's estate, but with each new discovery I understood myself better.

Before I say anything more about research, I need to acknowledge an irony: the studies I reference are all quantitative, though not because I do not value qualitative research. This piece, after all, is qualitative! And I have learned so much from the writings of my autistic fellows, who have clearly pushed neurotypical researchers to ask better questions. But for some, only quantitative research counts, and as I began to think about using research to help autistic people cope with the suicide of others, I did not have wherewithal to intervene in this decades-long battle.

I set out to make a crisis toolkit.⁴ Yet, all of the resources I found were written for the general population, not autistic people. The very idea of neurodivergent people was new: the scientific community, let alone society as a whole, had not yet embraced it. Without validation, I felt like I was trying to explain the uniqueness of a platypus to people who only knew about dogs.

I discovered several studies that confirmed the need for group-specific research. One found that autistic adults were significantly more likely to report a lifetime experience of suicidal ideation than the general public.⁵ Another found that early mortality was significantly elevated in autism spectrum disorder.⁶

In addition to assembling resources, I had to address a number of misconceptions. Everyone is not “a little bit autistic.” Although change can be difficult for most people, it is especially difficult for autistic people because it is experienced in a different way. The crisis center toolkit included better, more heterogeneous descriptions of autism and a range of strategies for effectively engaging with autistic people—all of it backed up by rigorous studies.

Yet, as valuable as these studies were, I had to wade through an abundance of frustrating material to find it, due to so many based on myths and outdated ideas about autism or misinformed research priorities. It matters what is researched. It matters who informs research priorities. It is essential for autistic people to be included in designing studies.⁷ It is tragic to waste valuable time and money pursuing what nonautistic people think is important as opposed to what autistic people know is important.

Many times, I was not able to help other autistic adults because there was no research to support my lived experience. I found this crushing. I am extremely thankful to the researchers who spent time, energy, and effort in researching topics about autistic adults. Without their studies, I would not have been able to use my story to help autistic people. I knew there were many others who had faced the devastation of suicide loss and the ensuing aftermath in the particular way I did, and I knew there would be more.

As my journey unfolds, I still need reliable research to back up how I experience the world differently from nonautistic people so I can share my story. I look forward to learning how to use qualitative methods to amplify claims and, just as important, to contest them when necessary. I can proceed only as far as the current research allows.

Therefore, my hope is for autism research to continue to be directly applicable to the daily lives of autistic people by looking “outside the box,” because that is where autistic people think. I continue to need explanations about how the autistic mind works in areas of mental health, including post traumatic stress disorder and suicide ideation, so I can help myself and others. As an autistic adult sharing my lived experience, which is different from the majority of people, I need proof. Research is my validation.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

I received no funding for the Insight article.