The Poor Kid Game: On Vulnerability and Unidentified Autism

A Childhood Clue at Summer Camp

Facing some of life’s most daunting, fearsome hurdles before first grade?  Venomous snakes, vicious dogs, and merciless thieves who leave you penniless?  What was meant to be an innocent summer camp activity led to my revealing, at the tender age of six, that those obstacles and more were part of my inner reality, part of how I experienced daily life.

Still, no one at camp, nor anywhere else, would have described me as a troubled child. To the contrary, I outwardly seemed a very happy kid, engaging with others willingly and with a smile, content to do pretty much whatever came along, whether that involved solo time or time with others. In school I became a top student and a model citizen, roles that I maintained through to graduate school.

Growing Up Undiagnosed

What no one knew, what no one saw, was that I am autistic, and that as a result, many components of life which are no trouble at all for most others can be tremendously challenging for me. Worse, no one identified this fundamentally important fact anywhere throughout my schooling nor through the first several decades of my life.

My sister and I are three and a half years apart in age, and the summer activity I refer to here was part of a day camp program we both took part in. Each camper was to design and build a board game as a week-long activity. I was one of the youngest campers, but this well-chosen activity allowed all of us to be excited about and eager to engage with the project. As my sister remembers, I worked very hard on my game and produced a project that was both well-constructed and intricate.

The end of the week brought the time for each of us to present our games to the rest of the campers. My sister’s game centered around a carnival, and she remembers other games being along the lines of “Get Rich Quick” or “Sports Extravaganza.” Fellow campers cheered on the kids presenting their games, and the mood was one of fun and celebration. Until I began to present mine, that is, when everyone grew quiet.

I had named mine “The Poor Kid Game.” Not poor as in without money. Poor as in downtrodden, unlucky, someone you wouldn’t want to exchange lives with.

As I explained to the group, the object of the game was for the Poor Kid to try to make her way home. She had to find the basics like food, water, and shelter, but all the while she also had to fight off obstacles like an angry dog chasing her, a tornado in her path, or a deadly snake where she tried to sleep. Needless to say, as happens with games, a player doesn’t always “win”, and the Poor Kid in this game didn’t always make it home to safety. I delivered all of this information in a very simple, matter of fact way, my sister remembers, as if it all were no big deal.

How extremely vulnerable I seemed to have felt, how unpredictable was my experience of life, even at that young age, for me to readily conjure up and fictionalize true threats to my comfort and safety…and to have used those to create my version of a “game”? And how commonplace and unsurprising did a challenging life feel to me that I presented my “game” to everyone without self-consciousness or shame? 

I don’t remember this episode from my early life, nor did I learn about it until this year, but I was not at all shocked when my sister shared this recollection with me. That’s because for the first 47 years of my life, while from the outside I performed well with academic and professional requirements, and I even performed adequately with social requirements, my inner experience was very different. I was perpetually hurting, confused, and battling a complex world which I didn’t understand but was expected to. 

My main social outlet all of my life has been the company of a single trusted friend at a time, each for years at a time, in a relationship where we had come to know each other very well. In addition, I absolutely needed significant solo time throughout my days and weeks…I now know that during those times alone I was recovering and getting the rest that was essential to my neurotype.

Many clues beyond those, in retrospect, prove that while I was doing what was expected academically, professionally, and socially, none of it came at all naturally to me. In fact, meeting those expectations equated to an onslaught of obstacles (which, apparently, I was in some way aware of even when very young).

As my summer camp game demonstrated, my life seemed, even to young me, to be especially hard. Challenges seemed unfair or to apply only to me—I somehow was already aware that my path in life was not like that of most others. The fact that the other campers were quiet as I presented my game matters so much to me…my sister thinks it’s because they knew I was as vulnerable as I revealed I felt.

The Cost of Late Identification

It took until I was 47 years old for my autism to be discovered. Like so many in my generation, it was the identification of my child’s autism that finally opened the door to my own. But even my daughter had to wait until age 15, herself too often also a “poor kid,” wading through danger-filled waters of self-doubt, social isolation, and bullying, and then the anxiety and low self-esteem that resulted.

Here’s the real takeaway: as an educator, researcher, and counselor, I absolutely know my daughter and I are not alone. We are by no means rare anomalies in society. Instead, the understanding of autism twenty and thirty years ago was simply was too limited, too narrowly-focused, and entire generations of autistic individuals went unrecognized as a result.

Myths and Realities of Autism

Equally important to understand is that it is simply not true that some people are mildly autistic and that others somehow have a greater degree of autism. Instead, the fact is that a person is either autistic or they are not. Some people are autistic on top of having chromosomal abnormalities or intellectual disabilities, and as a result might be unable to understand or communicate their needs (regardless of their speaking ability) and can be limited in their ability to learn. 

Still, around half of people with autism do not have those additional challenges…but our autism challenges us nonetheless. Like other autistic people, difficulties with transitions or executive functioning, rigid thinking, sensory sensitivities and limitations, and communication differences relative to non-autistic individuals all bring difficulties to a life where we navigate non-autistic expectations the majority of the time.

It is finally being correctly understood that people who excel in school, who are motivated and successful in their professions, who have friends and romantic partners, and who experience all sorts of other basic life elements can also be autistic. Many of us grew able to mask the signs of our autism, for better or for worse, so that no one noticed our struggles earlier in our lives. But that doesn’t make our autism any less of a factor for us than for those who were identified as autistic at an early age. So many people are hurting right now, just like I was way back in 1978 when I was six, because societal understanding of autism and its varied presentations is still very limited.

The challenges and struggles inherent with autism are very, very real. But so are the gifts, like excellence in analysis or pattern recognition, memory, and the ability to stick with a subject or task which interests us far longer than a person without autism would. We think in innovative and creative ways and can also be extraordinarily empathetic, kind, and loyal.

We might appear so capable and together, in fact, that when we struggle with elements of our life like executive function or commitment to tasks which do not interest us, an outsider might find us hard to understand. We might be labeled fickle, moody, or lazy. Our strengths and challenges can be held against us and lead us to being judged negatively, when in fact we might be performing admirably in the face of our struggles. This judgement is all the more painful when it is aimed at us for something we very well might not even understand ourselves.

Finding Purpose in Identification

Since the identification of autism in my daughter and myself, life hasn’t magically become easy or perfect for either of us, by any means. But finally understanding that we are autistic has helped in so many ways. We can be more understanding of our limitations and show ourselves more grace.  We can stop ourselves before willingly or unwillingly entering into situations which are not healthy for us…or we can acknowledge and prepare for these oncoming challenges with an informed consciousness. And then we can make the informed decision to recover afterward, with ample time alone or spent however we need it to be.

With this lived experience and gained knowledge, combined with all I learned in my 28 years in high school education and administration, I now eagerly strive to improve the quality of lives for fellow autistic and neurodivergent individuals. 

At Autism Discovery (www.autism-discovery.com), I developed an efficient, supportive, and economical alternative to autism assessment for adults who are not needing a formal diagnosis but who want to better understand their neurotype to improve how they navigate their lives. At Find YOUR Way (www.neuroaffirmingcounseling.com), I provide support and advising to neurodivergent high school and college students and career counseling to job seekers of all ages.

Knowing the challenges that being neurodivergent brings, it’s tremendously satisfying to guide neurodivergent young people in being prepared to handle the challenges that school and work inevitably bring, to help adults suspecting autism improve their quality of life, and to help neurodivergent people find rewarding careers. Without adequate support, neurodivergent young people may struggle to be both successful and happy at college or university or in their early stages of employment. And identification of a person's autistic neurotype allows them greater power in terms of informed decision making than if their autism continued to go unidentified.

All said, I do not regret the decades I spent unaware of my autism…because all of those years have helped me be as prepared as I am to guide other neurodivergent people to be their own best selves, living life with the least stress and the most comfort as is possible.

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By guest contributor Lara Schaeffer

Lara Schaeffer enjoyed a successful 28-year career in high school teaching and educational administration. After her daughter’s identification as autistic at age 15, and her own at age 47, she soon felt compelled to try to influence the current situation: many autistic individuals are as yet unidentified because of decades of built-up of oversimplification, stereotypes, and biases. Lara is especially passionate about supporting those who have realized later in life that their neurotype is autistic, as well as neurodivergent young people preparing for college and professional life.

Learn more about Lara's work at https://www.autism-discovery.com/ and https://www.neuroaffirmingcounseling.com/about

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Paths Uncharted is the blog of Divergent Path Wellness — an affirming mental health practice based in Charlottesville, VA, serving clients across Virginia. Learn more about us at divergentpathwellness.com