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Please Don’t Take My Sunshine Away: Part I

by on April 10, 2021

“Nothing gives me greater joy or provides more comfort than admiring you.” – Dana Renee (On the Autistic Special Interest)

One of the hallmark traits of children and adults on the Autism Spectrum are obsessive interests.  I don’t use obsessive in a pejorative manner, because these obsessions are important to children and adults living with the disorder – a disorder that can also be a disability.  What the Autistic person chooses to call the disorder, their challenges, and their own interests is a personal choice.  “Asperger Syndrome” was mostly a way to differentiate boys with higher IQs from those with learning disabilities and more severe sensory issues.  The diagnostic term was associated with Hans Asperger, a 1940s Viennese pediatrician who failed to recognize that girls and women could even be Autistic.  Even though Asperger’s Syndrome is no longer a diagnostic term included in the DSM-5, prior to the update in 2013 countless individuals were given that label.  It is also important to note ASD is not a mental illness; it is a neurodevelopmental disorder with some shared traits such as repetitive behaviors, intense resistance to change, and specialized, all-consuming interests.  Some Autistic individuals may have just one fixed interest their entire lives that plays a critical role in their survival – quite literally the “glue” that holds them together.  Thus, it is wise to discuss what (if anything) may happen to an individual if their treasured interest is suddenly and perhaps even irrevocably removed due to circumstances beyond their control.  

Even as I develop a thesis, I’m aware it is best to speak from personal experience only, but even then I’ve just begun learning how much fifty years of ASD has influenced who I am.  That is because ASD affects everything I do, how I think, how I engage with others, and how I perceive the world around me.  The majority of my fixed interests have been ideas somewhat accessible at most points in my life, and I can still visit them at will.  This especially applies since the advent of the Internet.  Two of those all-important interests were musical celebrities who consumed my adolescence and early teenage years – Boy George and Amy Grant.  Interestingly enough, these remain ones I have sometimes revisited when dealing with extreme stress decades later as an adult.  But for the most part, they remain mostly idle in the background, much like an old pair of slippers I no longer wear but can’t bring myself to throw away.  “Maybe I’ll use/need them again one day…”  This is nothing I can help, since special interests are not an aspect of ASD the individual can control.

Some people on the Spectrum argue over what to call these interests; I prefer the standard “special interests” because they are indeed special to me for different reasons.  For this purpose I will call them SIs.  I don’t find the term “special interests” offensive or patronizing although others on the Spectrum do.  Since being unique and fully oneself is especially significant for the Autistic person, selecting or even creating one’s own language for concepts related to the disorder really is best.  

In 2019 I was diagnosed Autistic at forty-eight years old.  It might be beneficial to provide some personal context for my own SIs.  From the age of nine or so I had begun to sense there was something innately different about me, and what few friends I had were typically different from the average child as well.  I also required and enjoyed long periods of quiet and solitude in order to survive and that hasn’t changed.  In the first through third grade I lived next to a large cemetery.  It was my favorite place to be during any season but especially after school. I was forever exploring this cemetery and the woods and prairies bordering it – exploring, yet always preferably alone.  I required the solitude and quiet to reset my nervous system after a day at school under fluorescent lights and with other sensory and social challenges besides.  When deep within a solitary moment, I can completely lose track of time, focused within the details of something that has caught my interest.  This can be anything from a gloriously detailed painting, to a complex progressive heavy metal song, to the bark of a tree.  Yet while consumed with solitude even today, my favorite SI (currently another human being I know) is consistently at the forefront of my thoughts. Again, I really can’t help this, but the unexpected benefits have been quite astonishing.   

When a new SI is developing, there may be external stressors involved such as feeling overwhelmed, anxious, or undergoing major life change and so forth.  These things can affect Neurotypical (NT) individuals as well, but an Autistic person is quite often unusually sensitive and highly resistant to change.  As much as I’ve typically enjoyed school, perhaps I felt some stress on the first day of third grade.  I have a clear recollection of a sudden, inexplicable interest in Benjamin Franklin when I opened my new science textbook to a picture of him and his kite experiment.  The feeling was almost…electrical!  Yet as a fixation he didn’t seem to “reappear” until three decades later.  My all-consuming interest in Benjamin Franklin fully developed right around the time I was a single parent with two older children, while registering for college courses after two years at one of my most stressful jobs.  In my sea of jobs, this one in particular was psychologically and physically stressful after several months off while recovering from major surgery and years of poor reproductive health. 

It is probably also helpful to explain the differences between hobbies, interests, and ASD SIs.  The ASD SI can be all-consuming to the extent discussion may even annoy those close to the Autistic individual.  To the NT person this interest may seem like all their loved one ever talks about, and it may very well be in more extreme cases.  As an Autistic person, I can attest to feeling disappointed, hurt, bored, and even frustrated when no one else cares to talk about my favorite SIs.  Constant discussion about the details of every single known dinosaur may be cute and clever in a six year old child, but repetitive discussion of a college instructor to others who don’t even know said instructor may eventually be aggravating.  And like many people with ASD, I can figure out ways to insert my SIs into nearly any conversation, even with strangers.  My less awkward self might later realize how off-putting that might appear socially, but in the moment I’m either feeling inspired or perhaps even nervous.  

One year into my college experience my brain suddenly replaced Benjamin Franklin as a favorite SI with a living person at my school who was also one of my instructors at the time.  There was absolutely no way to know what was going on in my own mind, much less manage or even prevent it at the time.  Knowing what I do about SIs, I highly doubt I could have prevented the phenomenon even if I had wanted to, or even if I had been diagnosed prior to 2011.  

My early childhood SIs have been retained throughout the years.  Some key interests have been reading and learning, geography, NASA, astronomy, geology, non-human animals, nature, horticulture, a handful of musical artists, and at least two people I’ve known.  There’s a lot said about the difference between “female” and “male” ASD, and this often includes the differences in SIs.  Nature and nurture are responsible for shaping the personality and interests of an Autistic child, so to delve into reasons why some girls fixate on Barbies while boys might choose rockets is futile.  Caregivers, family members, teachers and friends can be highly influential in any child’s life.  As a kid I spent a lot of time exploring nature so many of my fixated interests had to do with the world around me rather than specific toys.  I really didn’t even know how to play with most toys, especially if imaginary play was involved. I preferred reading, exploring, creating or building something over “playing house.”  I did like Barbies, but I never really knew what to do with them.  I mostly liked all of the miniature accessories and furniture Barbie possessed; today I’m still obsessed with miniature things.  

Two years into realizing my own Autistic life experiences, I’m beginning to see just how limiting and offensive genderization of this disability and its trademark symptoms can be.  Male and female are certainly biological roles, but gender is simply a social construct and there are a variety of ways to describe it.  So much of that depends on geography and culture that this could be an entirely separate essay, perhaps even a book.  But as we know, respecting and accepting the way others identify is critical to creating and maintaining a peaceful society and personal relationships.

Before I discuss the sudden absence of an SI, I should note it is also unfair to categorize ASD as “high functioning” or “low functioning.”  I will challenge anyone who labels me “high functioning” or “integrated.”  This has already happened on a number of occasions.  These biased labels are a means of separating those with learning disabilities and more severe ASD challenges from those with higher IQs and perhaps less challenging problems.  I don’t need to do that to make myself feel better about my own intellect.  Perhaps anyone who insists there are two extremes should observe a so-called “high functioning” person’s meltdowns to avoid that sort of black or white, rigid thinking.  

The reason I have mentioned issues with the two extremes of “low” or “high” functioning Autism is that I am not always “high functioning.”  I only appear to be as such to others because like many women and girls, I am quite adept at hiding my ASD traits and my anxiety.  In truth, the mere thought of no longer having access to a specific SI is completely unimaginable to me.  The very idea has also been unraveling to the extent I have experienced a number of ASD meltdowns just thinking about the possibility.  

I’m still interested in many of the childhood interests I mentioned above, and perhaps under the right circumstances might have been able to turn one of them into a lucrative career at some point in my life.  Whether or not, I don’t blame anyone, least of all my parents.  As I’ve aged I’ve adopted the attitude, “We did the best we could with the knowledge we had.”  I wasn’t necessarily a model parent of my two children at all times.  It is essential to avoid blame in many areas of ASD, especially when there hasn’t been a diagnosis or in the experience of many women, a misdiagnosis.  Without a proper diagnosis, Autistic people and their families or other loved ones are completely in the dark about what’s going on in everyone’s lives.  There is sure to be conflict and confusion if the disorder hasn’t been considered, much less adequately managed.  And ASD requires a lot of management in an effort to adapt to a society that consistently refuses to adapt to the disorder.  

It should also be said that adult ASD self-diagnosis is perfectly acceptable today, although that will not pave the way for accommodations and protections in the workplace, housing, and so forth.  Even with proof of a diagnosis, it may pose a risk disclosing ASD prior to a job interview or even upon hire.  A problem for adults seeking outside diagnosis are the woefully outdated assessment tools that are skewed toward male children.  It is also a costly assessment and rarely covered by most insurance. Misogyny plays a role in female adult diagnosis, but that is too complex historically to explain in a single essay.  There is an entire world of misinformation and ignorance to the extent I’ve been told, “You certainly don’t act like my neighbor’s autistic son.”  Why would I?  No two Autistic people are exactly alike within the disorder, much like the Neurotypical reader probably does not behave like their neighbor’s five year old NT child.  At least I hope not.

If anyone feels comfortable enough to disclose their ASD diagnosis, challenges, or quirks with you, or even approach the possibility they might be Autistic, please avoid insisting they need to seek professional help. ASD is not an illness, condition, or a mental health disorder.  It is innately a different way of thinking, compared by many to the difference between Android and iOS phones.  Similar device, different operating systems.  Next, if an Autistic individual, especially a child, is discussing their favorite interest again (and again and again), it is wise and even helpful to permit the conversation.  Learn to ask questions about it.  For instance, “What is one of your favorite things about Benjamin Franklin/coding/George Harrison/your college instructor?” You might learn something new, or at the very least, learn something new about the person attempting to socialize with you when they are probably a little awkward in the first place!

To date I’ve had at least two human beings I know unwittingly assume the role of SI in my life.  One was a former romantic partner – a highly intelligent, intriguing, creative person.  It would seem those are some of the main criteria for someone to become an Autistic SI, at least in my experience.  This is not to say these people are a special interest only; they may also fill other roles such as parent, school teacher, college instructor, spouse, and so forth.  But for the Autistic individual, that person may indeed feel like their “everything” much of the time.  In fact, realizing that for years I had a bewildering fixation with someone was one of the most significant catalysts for my diagnosis.  

After the past two years revisiting my entire life’s memory bank as my true self, I think I’ve finally determined exactly how the SI operates in my mind.  This especially applies when that fixation is someone I know.  There is currently no limit to learning about ASD, since what little accurate information we currently have is mere decades to just years old.  Further, people on the Spectrum are all so unique with different needs, traits, and challenges that there is an infinite wealth of information from which to glean.

SIs fulfill a number of roles for me.  One of the main aspects is alleviation from boredom and relief from anxiety.  I realize there are endless things we can do and learn to prevent boredom and relieve anxiety.  But once something or someone becomes the favorite SI (and there can even be mental ranking of importance), at times it may even feel nothing or no one else could be nearly as interesting or calming.  When the relationship with my former romantic partner/SI slowly dissolved, I decided no one else could ever be as interesting or intelligent.  

Perhaps I should also add that the fixation doesn’t mean I’m delusional, a stalker, or will drive past someone’s home.  There’s a huge difference and for the most part, SIs do not harm anyone involved, although they can become annoying to others.  When I was recently in college but still undiagnosed, I used to joke that I could work Benjamin Franklin into any conversation.  Later on I realized that my constant discussion of him probably annoyed those close to me.  This can be one of the most significant problems for Autistic people – a strong desire to discuss our interests with others, only to discover no one wants to hear about them.  Worse yet, to be told to shut up or that we’re talking about something “too much.”  I can never talk or think about my favorite interests enough.  

What might be some of the consequences when a favorite SI is no longer accessible?  There are parents and caregivers who limit discussion of their Autistic loved one’s interests or use them as a reward for “good” behavior.  If someone had limited my conversations about things that interested me as a child, I would have been confused and hurt, since this has happened to me many times as an adult.

While I cannot speak for others in the ASD community, loss of a special interest through something outside of my own control has been devastating to me.  And in the next phase of this topic I will share some of the consequences of that loss.

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6 Comments
  1. Another absolutely outstanding presentation, fortified with precise and insightful analysis. Your presentations are far better than a dry and two dimensional classroom approach. You helped me feel the experience, to the extent that I can.

    Like

    • Dana permalink

      Thank you, Marco. It was a lengthy essay but writing helps with processing the subject matter, as you know.

      I’ve found very little online regarding the Special Interest who is also someone an Autistic person knows. Knowledge is power, and having this knowledge about myself has eliminated all of my own confusion.

      And as always, I’m eternally grateful you’ve provided a platform for me to share my thoughts and experiences.

      Like

  2. Ray Rivers permalink

    Dana – wonderful and very helpful to the great unwashed like me. Stay safe and well.

    Like

  3. Steve permalink

    Thanks again, Dana. It is true individuals on the spectrum are as unique as those who are not and therefore cannot be casually lumped into a “one size fits all” method of thinking. That said, your writing is very helpful in providing insight into our son’s perceptions since he hasn’t reached a point in which he can articulate how he processes the world.

    Like

    • Dana permalink

      I hope I can somewhat be a help, Steve. Writing helps me too. I’m just now learning how to articulate all of this, and it takes a lot of courage for me to say it publicly. But there will never be acceptance if those of us who can speak remain silent.

      Thank you for reading, and for replying too.

      Like

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