BEING PART OF THE BEAUTIFULLY COMPLEX AUTISM COMMUNITY By Alexandra Hjerpe, 2nd Year MDiv

Hi! My name is Alexandra.

I’m a second-year, Masters of Divinity student at Wartburg Seminary. I grew up in rural Minnesota. I graduated in the top tier of the honors program at Augustana University. My favorite movie of all time is Jurassic Park. I’m no good at dancing to music or socializing at parties. I can’t do a somersault to save my life. My favorite part of scripture is the Psalms. I am obsessed with the color turquoise. I believe cats are God’s gift to differentiated academics. I’m equally parts introvert and extrovert. My favorite kind of ice cream is rum raisin. Autumn is my favorite time of year. And I’m one of many representatives of the Autism Spectrum Disorders community.

I always get excited when April rolls around every year, as I think about the fun things that I could do to differentiate myself as a part of the ASD community during Autism Awareness Month. Should I host an anime marathon every Sunday? (Too cliché). Should I host a dinner full of sensory-friendly, or sensory-aversive, kinds of foods? (Lots of applesauce.) Or should I just mind my own business and move on, trying not to attract too much attention to the fact that I identify as someone from a different neurological heritage and community?

Does it really matter that much?

The official terminology for ASD includes the word “spectrum” for a reason: no two people are alike in this world, especially people who are influenced by the neurodiversity of Autism. This truth goes not just for ASD, but for people who are any part of any group that we have created.

I think human beings love to categorize, because we love to think that we are in control, and that we can know what is going on. There is something comforting for me about organizing our reality into something manageable—it gives a feeling of security, wisdom and safety from the unknown. But, truly, it’s just another way to distract us from our mortality: we are dying. Nobody escapes that.

All nihilism aside, the question still stands: what does it mean, in generalized terms, to be loosely collected into the broad spectrum of ASD? And why does that matter?

Speaking in culturally-normative, scientific terms, Autism Spectrum Disorders is a term covering five different major categories of pervasive development disorders: PDD-NOS (Pervasive Developmental Delay – Not Otherwise Specified); Autism (sometimes referred to as Classic Autism, Early Infantile Autism, Childhood Autism, or Autistic Disorder); Asperger Syndrome; Rett Syndrome; and Childhood Disintegrative Disorder.

The Autism Spectrum part of ASD is paired with the word “Disorder” due to some shared traits frequently recognized within this community, which are divergent from and frequently cause strain with normative society: generally, Social Impairments; Speech/Communication Deficits; and Repetitive Behaviors / Specific Interests.

In my brain and body, for example, something is happening where my sensory system volume is turned way up: sounds, sights, textures, touches, all these inputs seem louder, more exaggerated, to me. This is just one example; for another person on the ASD spectrum, the sensory system may be turned to a low volume (where one does not seem to feel much of anything!). For another, these neurological connections might impact the way that the brain connects topics including muscles, cognition, and more, leading to larger-scale physical delays such as cognitive function and development.

But personally, speaking in the terms of a fellow human being, I like to think of the ASD community as a diversified group of humans with specialized skills and particular sensory awareness. Such a definition affirms the strength and uniqueness of persons on the ASD spectrum in relation to what we culturally view as normative, rather than the deficits or struggles that separate people from those expectations.

We don’t know for sure what causes ASD characteristics. Some research seems to indicate that the structure of synopses connecting in the brain impacts the neurology of how the mind and body connect, resulting in unusual patterns of human development. Most research concludes that ASD has a biological component, showing up here and there across patterns of family history.

What we do know for sure is that people who have been diagnosed on the Autism Spectrum are people first—full of richness, complexity, and potential—and are primarily fellow creatures and children of God, worthy of the same dignity and respect allocated to peers.

I went through the process of self-diagnosis while I was in college, affirming what I understood about my social, cognitive and sensory self from a young age. Typical for someone who has Asperger’s Syndrome, I recognized that there was a pattern and a structure going on with my reality–but I did not internalize that this pattern had a great deal to do with how I encountered the world, and perceived it around me through my senses and interpretations of these senses. For example, a course about the diversity within the ASD community released me from feeling like I was not the only person in the world with synesthesia, the trippy ability to perceive music through the medium of color in ones’ mind. I realized that there were others like me who also consistently craved the familiarity and security of rituals within a daily routine, and who felt the compulsion to make sure all their writing utensils corresponded to each day of the week in color, shape and size.

As I began to know myself better and more wholly through my ASD diagnosis—as one who is fearfully, wonderfully, and intentionally made in the image of God—I began to take courage in who I am. I learned how to manage my need for controlling aesthetic environments, and how to prepare for anxiety about social situations.

And then, ultimately, I realized that these unique gifts and struggles did not make me that much different from all of the other people who surrounded me in this world, who were not in the diagnosis of Asperger’s. We are all entrusted with different gifts. We all find ourselves in the corner of our growing edges. We are all beloved of God.

And while my life may not involve the same gifts and struggles as those that are most common within our society—while my biggest crisis of the day may be that I cannot match my soft-textured Digimon T-shirt with my favorite jeggings—that does not make me, or anybody else!—that much less of a person.

As I celebrated Autism Awareness Month April 2016, I celebrated my life, which is a life that lives honestly and vibrantly into God’s mission. Part of this life and identity includes who I am in the ASD community. Part of this life has very little to do with Asperger’s. Regardless, I thank God for a human community of wonderful weirdness, beautiful complexity, and wide welcome.

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