Journey Towards Wisdom: Narrative Shards That Have Impacted My Life

I am autistic. You may also use neurodivergent or neurodiverse. I will not accept ‘person with autism’ or ‘Aspergian’ as descriptors. The latter is unacceptable because of the man—a Nazi collaborator who selected the children he deemed physiologically acceptable to protect within his study while the others were sent to die. In regards to the former, it makes one wonder why someone might need to be reminded of the humanity of an autist. Considering the volume of research I have read, along with the toxic interactions I have been part of on social media, the phrase is a reminder of the fact that many people do not view autistics as fully human. Language is important. Establishing a common vocabulary is the first step in creating a common understanding. Autism cannot be separated from my experience of education any more than it could be subtracted from my sense of self. It would be impossible to inquire into any part of my experiences without addressing the role of autism.

Posthumous diagnosis of notable historical figures has become part of the neurodiversity movement’s strategy to make the embracing of an autistic identity socially acceptable. I will add a name to this trend—one that is of personal rather than historical significance. My grandfather is the person furthest back in my family tree that I know enough about to confidently bestow a posthumous diagnosis. At the age of three, his mother found him reading a newspaper at breakfast. She initially assumed he was looking at the funny pages but was shocked to find there were no pictures on the page. My great-grandmother was illiterate which meant she had to wait for her school-aged son to come home to determine if my grandfather was play-reading. She had my grandfather read out loud to the older boy, who confirmed he was reading everything accurately. Nobody ever discovered where he had learned to read, but it was not an act. My grandfather ended up teaching his mother to read over the next couple of years while he waited to be old enough to start school.

One of my younger male cousins was the first person in my family to be formally diagnosed with Asperger’s Syndrome. My older brother followed shortly afterwards. At the time, it was still thought that if autism was genetic, it was carried by women. Our family became part of a study that helped disprove this idea. It was my father who was the link to autism in my family, and his brother in my cousin’s family. My father and uncle could claim their father as their autism link.

I would like to be able to say my family contributed to the revision of gender stereotypes in the diagnosis process, but it would not be true. My father believes his late sister would easily have fit the diagnosis criteria if she had not been killed by a drunk driver at the age of twelve-years-old. It was the diagnosed cousin’s sister who became the first female in my family to receive a formal diagnosis. She was diagnosed with obsessive-compulsive disorder, anxiety disorder, ADHD and depression before her doctor’s finally acknowledged her mother’s repeated demands that they consider the possibility that she was autistic like her older brother. She was diagnosed as a teenager. Approximately fifteen years later, I decided to seek a diagnosis, which I received. This spurred my younger sister to do the same. At some point the other girl and boy in my uncle’s family were diagnosed,  making all four of his children officially diagnosed. One of my other two brothers was diagnosed as an adult, bringing up the number of officially diagnosed among my siblings to four. One other older cousin, the son of my father’s sister, was also diagnosed as an adult. This ends the list of family members formally diagnosed, but autism is beginning to be recognized among the children of the next generation.

The image of a broken mirror got stuck in my mind when I read this quotation in Engaging in Narrative Inquiry. Clandinin said:

“Working with a metaphor of a shattered mirror, Downey and Clandinin (2010) wrote that in narrative inquiry, there is attention ‘to the pattern in which the mirror has shattered,’ in order to attempt to see the ‘myriad bits’ as a life, as stories lived and told by a person in particular times and places’….” (Clandinin, 2013, p. 204)

In regards to obsession, Norman Mailer said:

“Obsession is the single most wasteful human activity because with an obsession you keep coming back and back to the same question and never get an answer.” (Mailer, 1995)

Discovering this quotation made me determined to prove to myself that I was not returning to the same question without getting an answer. With that settled, I focused my attention once more on the metaphor of the shattered mirror. I have given the function of mirror a lot of thought, in both the literal and metaphorical sense. A mirror is supposed to reflect the image of what is in front of it. A broken mirror is a little different. An angular deviation is created in the rays of light that results in each shard becoming a separate mirror. This causes distortions in the reflections.

I began to think of these shards and distortions as the influence other voices have on my narrative. It made me wonder when my mirror broke. I wondered if we are born with an intact mirror, or whether our mirrors are broken in the womb. I also wondered if our dependence on other people causes our mirror to shatter as we are pushed out of our first world into the one we will occupy for the rest of our lives. If the shards and distortions represent the influence of other voices on our lives, then there was one thing I could know for certain: Nobody could make it through life with their mirror intact.

The impact of my experience at an Indigenous Band-run school in Saskatchewan is the first shard of my narrative inquiry I would like to address. This school is currently in the midst of a youth suicide crisis. Years earlier I lost a student, not to suicide, but as the result of a series of tragic decisions. This was not the first school I worked in that I lost a student, but for some time I was determined it would be the last.

He was only sixteen. It seemed impossible that he could already have made a decision that was so dangerous that it cost him his life. He had been drinking and decided to try to hitch a ride to another house. The reason this seemed necessary to him on such a cold day is something I will never have an opportunity to know, any more than I will know if he had a sense of his mistake as he succumbed to the cold. My hope is that it was like laying down for a nap.

The pointlessness of his death broke me as an educator. I told myself it would be better to work with machines and risk my own harm than to work with youth who could rip out my insides without meaning to. I walked away from teaching and went back to school, earning certification as a Third Class Power Engineer. I did not get a chance to work in industry for very long before the oil price nose-dived. On the surface, these choices appear to have been a huge waste of time and money. After all, I am back in band school, working with Indigenous youth like I was when I walked away. I travelled in a full circle and discovered the same suffering right where I had left it.

I was plagued with doubts when I made the choice to part ways with the teaching profession. I wondered if the bottom-line was that I lacked the emotional maturity to deal with death. It made me wonder if autism made me unsuited to work in a profession where so many lives could impact mine—where my mirror could be broken into sharp slivers that could cut me at any moment. It felt a little like trying to sit on the Iron Throne of Westeros, formed from the swords of enemies, without inflicting wounds upon oneself.

Years later, working at another Indigenous Band-run school and taking my Master’s Degree, I began to see stories on my Facebook feed about the school that almost had become my last teaching placement. There were the faces of teachers I had worked with, shadowed by grief and exhaustion. It suddenly occurred to me that I had considered myself separated from the intergenerational reverberations that were being dealt with every day in that school and the community. A fellow Master’s Program student named Britt Hendry said:

“Canadian post-secondary education systems uphold colonial dominant historical, cultural, and social narratives; thus, these institutional narratives are being passed down to students.” (Hendry, 2019)

I realized that not only had I considered myself separate, but I had also believed my position should still be privileged. It did not occur to me that as part of the community and staff, regardless of my cultural and racial background, I was obligated to be part of the disruption of harmful intergenerational narrative reverberations and the creation of positive ones.

At the same time, I realized that I had felt the same way about the intergenerational reverberations of autism within society. Michelle Dawson said:

“…autism is not a contagion, intolerance is. There is no immunity. The Quebec Human Rights Commission was infected in 2001 and still is. They decided to intervene in support of a class action by parents insisting that autistics are doomed without ABA… In its legal and public position, this human rights commission sees autistics as catastrophic collections of defects, rather than as human beings possessed of human rights.” (Dawson, 2004)

Through inquiring into my storied experiences I had created new reverberations in my life around the role of autism—that it was an intrinsic and valuable part of my identity—but I had done little to disrupt the narrative reverberations young autists were absorbing from a society that described them as catastrophic collections of defects. I had privileged my own narrative at the expense of seeing the shards of other narratives within my broken mirror—fragments that reflected something much uglier than the pieces I considered solely my own.

When I made the decision to reenter the teaching profession I was forced to face the reality that I had been a fool, but not for leaving in the first place. Stepping away from teaching was the best decision I could have made. After graduating from high school it had not occurred to me that I could take a break. It never dawned on me that I could go out into the world and gain life experience. The next chapter in my story, as I had planned it years before, was to go to university, so that is where I headed. Although I was present in the physical space of the University of Saskatchewan, my mind and spirit were not always there with me. Once I received my Bachelor of Education and Bachelor of Arts, the next chapter as written was to get a job.

I am going to contradict what appears to be my general point with this particular unpacking of a story by saying that in many ways, I probably would have been better off if I had strictly adhered to my original plan, but not in the most important way. Let me explain. After my first year as a teacher, I got into my first relationship. It was not a good one. I could write hundreds of pages about how terrible this relationship was, but I think it is sufficient to say that at the end of it, I was a divorced mother of two girls. They are the reason why not adhering to my original plan turned out to be the most important decision I have made in my life.

Becoming a mother was not a decision I regretted, but it did change my state of mind as an educator. All the trauma involved in my storied experience of those years impacted the quality of education I was able to provide. Going back to school to get my power engineering certification turned out to be a costly way to become less foolish, but it was a journey I needed to take.

Earlier in this paper I stated that I had come full circle and found suffering where I had left it, which is not precisely true. This would imply I went back to the school when I actually am teaching in a more northern location. During my previous years as a teacher, I had often wondered how there had not been any autistic students in my classes. Perhaps the universe was saving this experience for when I was a little less foolish and had a better sense of my role as an autistic educator.

I met a student in my new teaching assignment who I personally related to. It would be inaccurate for me to call her autistic since she does not have a diagnosis and has no self-awareness that she is most likely on this spectrum. Of course, this was the situation I was in at that age. I recognized my own social awkwardness, anxiety, introversion, doubt, determination and single-minded focus reflected in the experiences I witnessed her living. My instinct was to reach out and save her from making the mistakes I had made. At the very least, I wanted to educate her about autism and introduce her to the idea that she was on this spectrum. Strangely, I did not end up doing either. All I could do is lean over her and hope that the image I cast on her life would have a reverberation within her personal narrative that would influence her journey of self-discovery.

Another student of mine has a formal diagnosis. He reminds me of my older brother or my cousin. This resemblance often makes me sad because my student has lofty ambitions that I worry are not attainable. My brother began to have serious mental health problems at my student’s current age. Sometimes I worry that my student might go through these same struggles with mental health. Other times I think about the statistics concerning employability with autistics and fear that he might be facing a lot of disappointment in life. Recently, I crossed over the line of merely being worried and became panicked when my student started asking me a lot of questions about death and suicide. I am very familiar with the statistics that say the leading cause of death for autistic adults is suicide. The reverberations of the suicide crisis at my previous school made me fearful about his state of mind.

My student turned out to be whistling in the dark. Have you ever been walking alone in the dark and found yourself whistling to make yourself less afraid? When I am overwhelmed and anxious, I like to imagine all the most horrible scenarios I can think of and have a cry over them. To me, this is like whistling in the dark. It is a way to gain a sense of control when I feel helpless because once I have imagined those things and grieved for them, it feels like they will no longer be able to happen. My student was doing the same thing by asking about death and suicide. He was gaining control over a concept he did not fully understand, but which caused him a great deal of anxiety.

A few years ago, I would have broken down if I had been faced with the problem of how to deal with what my student was going through. The journey I took in the years between helped me be the person that the student needed me to be at the moment when he needed someone to understand what was happening inside his mind. The myriad bits of my life and the shards of other voices that had become part of my broken mirror all are helping me disrupt the reverberations of society’s autism narrative for this student. I am the first autistic adult that either his parents or the boy have met, and I am his teacher. His mother shared that meeting me has given her hope during a period when she was starting to feel despair for her child’s future. I wish I always was able to share her sense of optimism, but the truth is that when the reverberations run deep, they are difficult to disrupt. It takes a consistent and persistent mindset. I feel like each day I get a little closer.

Bibliography

  • Abse, D. (2003). Pathology of Colours. London: Hutchinson.
  • Clandinin, D. J. (2013). Engaging in Narrative Inquiry. Left Coast Press.
  • Dawson, M. (2004, 18 January). The Misbehaviour of Behaviourists: Ethical Challenges to the Autism-ABA Industry. Retrieved from No Autistics Allowed: Explorations in discrimination against autistics: http://www.sentex.net/~nexus23/naa_aba.html
  • Hendry, B. (2019, November 26). Voice Thread Presentation. Retrieved from Voice Thread: https://voicethread.com/share/13337333/
  • Knowles, E. (2004). The Oxford Dictionary of Quotations. New York: Oxford University Press.
  • Mailer, N. (1995, June 15). American Way. (D. Infusino, Interviewer)
  • Young, M. I.-L. (2015). Warrior Women: Remaking postsecondary places through relational narrative inquiry. Bingley, UK: Emerald Group Publishing (PAPERBACK VERSION).

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Second Self

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