If you found this page, it’s probably because autism touches your life or someone in your life. Welcome. You’re among non-judgmental friends. To explain what this group is about, I have to blather on about a lot of stuff because it sets the stage for the explanation. The story is both autistic and an interesting analogy for the confusion that is autism. So, please bear with me...
Some Background On Me
My name is Chris and I am the organizer of this group. I was born in 1968. I had a traumatic brain injury (“TBI”) in 2011. I was diagnosed with Autism Spectrum Disorder (“ASD”) in 2017 at the age of 49. No, the TBI did not cause the ASD. I’ve always been autistic. The diagnosis radically changed my life for the better, for it gave me the most succinct (my autistic brain loves efficiency) explanation possible of how/why I was different. After the diagnosis, I spent a lot of time researching autism (my autistic brain is addicted to purposeful learning). After all of that research, I still have a very hard time answering this simple question: what is autism?
What the Heck Is This Thing Called "Autism"?
After a lot of research, I still have a hard time answering that simple question. For a seemingly unhelpful but nevertheless truthful answer, I am going to reframe Supreme Court Justice Potter Stewart’s words from the 1964 case of Jacobellis v. Ohio, changing the topic of focus from pornography to autism: “I shall not today attempt to further define Autism, and perhaps I could never succeed in intelligibly doing so. But I know it when I see it.”
The truthfulness of those words is grounded in two realities. Let’s talk about the base reality first. The very concept of “autism” emerges from the constantly shifting intersection of four realms: (1) the lived realities of autistic individuals; (2) society’s understanding of and response to autism; (3) the hard-science worlds of biology/neurology; and, (4) the soft-science world of psychology. Autism is an emergent property. It is like a cultural brain, with those four realms being analogous to the four major lobes of the human brain. This cultural brain has both hierarchical and parallel networks and connections, and the networks are always evolving, like the human brain. That’s a pretty complicated reality behind a word as short as autism!
The second reality is that, as a collective identity, autism is quite immature. It was only identified as a distinct “condition” in 1943. Our collective identity is therefore only about 75 years old. The average life expectancy for an American was 78.7 years in 2016. That means our collective identity should be old and wise and enjoying life. It isn’t. I would argue that our collective identity is more akin to that of a teenager struggling to figure out their identity, and here’s why: our collective identity has, over our short collective life, been mostly defined by neurotypicals.
That has been steadily changing over time, most notably since the 1980s, after autism was added to the DSM III in 1980. Aspergers only got added to the DSM IV in 1994. Aspergers got rolled into the broader Autism Spectrum Disorder when DSM V was published in 2013. That’s a lot of identity changes over a fairly short period of time. In terms of the development of our collective identity, they have certainly helped move things along, but let’s also face the reality that they have been disruptive to the evolution of the collective identity. Thanks to the hard work of other autistics, we have been slowly taking more control of our identity.
Okay, Okay...Let’s Get to This Meetup Group Stuff
I took over as organizer of this group in April of 2018, just 11 months after receiving my diagnosis. I was excited, but the weight of the responsibility I felt was great. While we share the “autism” label, the reality is that there is a huge range of realities, strengths, and weaknesses among us. Even so, we tend to fall within certain groups that lie along the spectrum, like Aspie/HFA and LFA or verbal and non-reverbal. And then there’s the neurotypically-imposed variable of diagnosed or undiagnosed, and whether the diagnosis was given as a child or adult...Where to start?!?!
Please don’t hate on me for using words/labels that neurotypicals use. I am quite aware that labels are double-edged swords. They are necessary because they help other people to better understand each other, but they can also be identity constraining. We have to accept/tolerate the language of the neurotypical world—and constructively encourage positive changes of language in that world—just like the neurotypicals need to learn our autistic language. Now that we gotten through that necessary disclaimer, let’s get BACK to the Meetup Group stuff...
I wanted the group to be as autistically inclusive as possible, but how do you make that happen? What does it look like? I wanted the group to be as positive and constructive as possible, but how do you make that happen? What does it look like? I struggled to answer those questions, just as I struggled to understand autism. That’s why it was 17 months between me taking over as organizer and the first meeting finally happening (we had that first meeting on Saturday, August 17 and the group will be regularly meeting on the third Sunday of every month).
Here’s the bottom line answer to those questions: I don’t know, and that’s okay. I don’t have to know. As a group, we will figure out what we want those answers to be, and the answers will change over time as the group’s needs, goals, and desires evolve. I have come up with an initial set of goals that I would like to see the group have. Again, the goals may change as the group evolves. For my “starter set” of goals, I would say that Portland Autism Connections is about bringing autistic people together to:
• Have positive, constructive, and rewarding social interactions free of judgment and fear; and,
• Better understand ourselves, our own autistic community, and the larger neurodivergent community of which we are a part; and,
• Identify and support the development of our individual and collective strengths; and,
• Share strategies for successfully interacting with the neurotypical world in general; and,
• Share knowledge about medical issues, the medical model, and how to get health care that meets our specific and, oftentimes, unique needs; and,
• Share knowledge about community resources that might be particularly useful to autistics; and,
• Explore cultural representations of autism; and,
• Explore what the academic/scientific/medical community knows about autism; and,
• Help the neurotypical world better understand and accept us.
Let's work together to make our neurodivergent lives better!
Humans are social animals. In every interaction between people, social rules are tacitly being negotiated. A lot of those social rules become assumptions that we don’t think about, such as “That person is not going to physically attack me.” Since autistics sometimes struggle with understanding the social expectations others have of them, I believe we should have some rules that govern discourse and interactions within the group. I am just offering these as a “starter set” of rules. They will change as the group evolves, but the rules will always be ideologically agnostic and in furtherance of the group’s goals.
• We are coming together because of our shared identity as autistics. We will respect and value other identities, but within this group, we will keep the focus on our shared identity of autism. We must embrace our commonalities and shun that which divides us, especially during these very dark cultural times.
• Us autistics struggle with being judged by people—most notably neurotypicals—who do not understand us. We do not want to be judged, so we must not judge other members of the group.
• Reducing anybody's identity to a weaponized label (e.g., racist, sexist, etc.) will not be tolerated. We are autistic. We are coming together to push back against neurotypicals' definition of that label. We will not use judgmental labels that erase the individuality of any person.
• To avoid potential toxic conflict, group/public discussion referencing any political person or political party in negative ways will not be tolerated. We do not want to be stomping on anybody's buttons. Nothing constructive will result. Discussion about government policies/systems/regulations related to autism or neurodivergence is encouraged, but keep it factual, analytical, and constructive. Positive change can happen, but only if we keep the negativity at bay.
• Some group members may have immune systems that work differently from others and may therefore be more susceptible to catching illnesses. Please do not attend our meetings if you are sick or it has been less than three days since you were sick.
• Some group members may have heightened sensory perceptions. Collectively and individually, we shall do our best to make reasonable accomodations for those individuals and will do so without shame. Try to be as fragrance free as you can reasonably be. In other words, please keep your use of perfumes, scents, fragrances, and/or essential oils to a minmum before meetings.
• Respect other member’s bodily autonomy and touch others only after obtaining consent.