After several weeks of juggling various projects and generally bumbling the whole executive functioning thing, I’m finally getting around to transforming my presentation on neurologically mixed relationships into a series of blog posts. And I say posts, plural, for a few reasons.
For one thing, my presentation was just over an hour long. No one wants to wade through that wall of text. Plus, the actual content that I wanted to cover in the presentation would have taken an entire day or more to go through. Now that I can include everything, I will—it’s my blog, goshdarnit!
This post is an intro to the metaphor of neurotype as culture. In the following posts, we’ll begin the more in-depth dissection of autistic and neurotypical culture, and how these “cultural” differences affect relationships.
As a child, I assumed relationships were something that just happened.
I knew that if a cartoon movie had two main characters, they would usually wind up Together (The End). I thought romance was essentially a product of proximity.
Another lie my childhood media consumption taught me was the whole “Happily Ever After” thing. You win the heart of your complimentary character foil by existing near them until they inevitably fall in love with you, and then you’re instantly and unceasingly happy. Forever. Obviously, that’s just what any good relationship is like, right?
Pop culture doesn’t like to waste time on the boring stuff, like how to make a relationship work, or that it takes any effort at all. In the land of ~Happily Ever After~ a relationship either works or it doesn’t.
Strangely, it’s only relatively recently (in the grand scheme of things) that people have become comfortable talking openly about the gray areas of relationships. Talking about things like arguments, frustration, and (GASP) couple’s therapy.
Relationships are hard! Even the best, most ideal relationship takes work. What’s more, there’s no one-size-fits-all formula for the perfect relationship.
All relationships are different, but some relationships are more different than others.
(Is it inappropriate to make an Animal Farm reference in this context? Whatever, I thought it was funny.)
By the way, when I say “neurologically mixed relationships,” I’m not talking only about romance. While that will be my primary focus, a romantic relationship is still a social relationship at its core. Most, if not all of the information I intend to cover in this series is relevant to any type of relationship. My intent is to create content that can be equally useful for anyone, single or partnered, autistic or not.
So, I assume we already know that autism supposedly affects interpersonal relationships.
(Meaning, both relationships between each other, and relationships with allistics.)
Autistic people often need extra help in learning to navigate social situations—especially when interacting with allistics!
The important thing to remember is that we can learn.
Autistics usually have highly developed declarative memories. That means we’re good at conscious recall. It’s the kind of memory used to spell a word at a spelling bee, not to be confused with the kind of memory used to ride a bike. (Though I will admit that we often have pretty weak working memories, but that’s a whole other topic.)
We use our declarative memories constantly to do things that otherwise come naturally and unconsciously to allistics. And we can use our declarative memories to intentionally learn how to understand and interact with others.
While social connection is an enormously complex collection of processes, and an autistic can never be expected to “overcome” that by effort alone, we can use declarative memory to improve self-awareness and help develop an analytic understanding of social interaction.
But, autistics aren’t the only ones with problems!
Allistics need to learn to understand autistics in order to work together.
It takes two to communicate, and it takes two to have a communication problem.
All too often, the burden to communicate “correctly” is placed entirely on autistic people.
It’s true that an autistic person who wants to interact with allistics does need to put forth effort to improve their self-awareness and communication skills.
But, it’s often even more important to remember that an allistic who wants to interact with autistics needs to make the effort to learn how to communicate with the autistic people in their life!
Accurate, mutually-beneficial communication is always an act of compromise, no matter who’s involved.
Neurological Culture Shock
The challenge of a neurologically mixed relationship can’t just be reduced to “normal” vs. “disordered.”
It’s an issue comparable to two conflicting cultures trying to interact.
While things like cognitive empathy and communication are still issues in relationships where both parties are autistic, these things are even more difficult when only one partner is autistic.
One of the most difficult barriers to a successful relationship between an autistic and an allistic is the difficulty the allistic has in empathizing with their autistic partner. There’s so much focus on the autistic squeaky wheel that it can sometimes be difficult for allistics to recognize when they need to practice empathy too!
It’s important for allistics in the autism community to understand that we all live in a neurotypical culture.
Difficulties in communication and empathy in mixed, autistic/allistic pairings can in many ways be likened to a culture clash.
This analogy is one I first heard from Dr. Stephen Shore, a wonderful man and autistic advocate. Stephen likes to say that one of the reasons he and his wife connected and understood each other so well when they first met is that they both knew what it felt like to be cultural outsiders—he being on the autism spectrum, she having only just immigrated to the US from China. (I recommend his memoir, Beyond the Wall, to anyone interested in the full story.)
All autistic people identify in some way with the feeling of being an outsider, a misfit, or having been born “on the wrong planet.” The metaphor of autism as a culture usually makes intuitive sense.
While autistic people don’t have a true, united culture in the anthropological sense, our physiological differences result in practical differences that mimic a united culture.
Interestingly, many of the “social difficulties” involved in autism don’t cause the same problems when autistic people are socializing with each other. Things like autistic conversation style, topic choice, nonverbal communication, and so on, can seem strange and even alienating to allistics, yet perfectly fine to other autistics.
Of course, there are infinite reasons why making social connections is difficult for autistic people. In certain ways, connecting and maintaining relationships with fellow autistics can be even harder. And reaching out to others at all is a complex topic in and of itself. But there’s a reason why autistic people actively seek to create “safe spaces”—like ANI’s Autreat—where we can be our own autistic selves, comfortably blending with an autistic majority.
I would argue that many, if not most of the disabling aspects of autism are not “autism” so much as the environment, expectations, and norms of the dominant culture.
(As well as comorbid conditions that are also not “autism,” as often discussed by Amy Sequenzia, but that’s a topic for another day.)
To quote the blog Autism Through Cats, “We’re disabled by the way it’s socially acceptable to wear strong perfume that makes us feel ill but it’s not acceptable to cope with stress by rocking.”
When it comes to forming relationships—either friendly, professional, or romantic—we’re often disabled by our different social rhythms and priorities, and our sensory perceptions.
We’re disabled by the fact that normal autistic behaviors are seen as rude, crude, and antisocial. Our intentions are misinterpreted, our natural body language is seen as a lack of body language, our emotions are misread, our sensory needs and pains are dismissed, our conversation structure is seen as self-absorbed, and our expressions of empathy are read as uncaring.
Even if we don’t always come out and say it, everyone knows that the autistic minority has to adapt to an alien culture that won’t adapt to us. When you play the game of social integration, you win or you die.
After all, there’s a reason why the mainstream philosophy is to drill autistic kids with eye contact and handshakes. The physical pain and psychological trauma of autistics is secondary to the minor confusion of allistics, when those allistics are the ones with the power to arrest us, hire us, or fire us.
We live amidst a neurotypical majority in a world where everything from clothing to infrastructure is designed without us in mind.
It’s disabling to be autistic in a neurotypical culture.
You’re not gonna explain what “AS” and “NT” means?
Oh, sorry! It’s in the first paragraph, so I didn’t think to define them. They’re standard acronyms. Have you heard terms like “ASD” and “neurotypical” before?
ASD is the standard psychiatric shorthand for “Autism Spectrum Disorder.” I’ve seen “AS” used to represent “Asperger’s Syndrome,” “Autism Spectrum,” and “AutiStic.” NT is the standard shorthand for “NeuroTypical.”
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Wow! What a wonderful article. Cleared a lot of things for me. 😀
“After all, there’s a reason why the mainstream philosophy is to drill autistic kids with eye contact and handshakes. The physical pain and psychological trauma of autistics is secondary to the minor confusion of allistics, when those allistics are the ones with the power to arrest us, hire us, or fire us.”
Oh yeah, that is very true. Minor discomfort indeed overrides all else. I’ve noticed the only people I relate to are the weird ones. The normal ones aren’t always bad, but even when they’re nice, they don’t understand. They can’t.
However, I gotta say something. This entry only talks about autistics in the form of those who aren’t also severely disabled by excessive sensory input or other problems. Autism is a very wide spectrum, and it includes both the severely disabled individual here – https://www.youtube.com/watch?v=vNZVV4Ciccg – who, once able to communicate, shows that she is much smarter than anyone ever thought, and the mega-genius here – https://www.youtube.com/watch?v=OR36jrx_L44 – whose only obviously visible autism traits are his eye contact (looking around while thinking, as autistics usually can’t think well when looking at a person) and some speech intonations. Autism can be disabling outside of societal prejudices and allistic bigotry against those who are different, depending on the form. I understand why autistic disorder, Aspergers Syndrome, and PDD-NOS were all grouped together, as it truly is a spectrum and some people can go from one form to another (note that the super genius boy was unable to talk when he was little, and was socially way behind and barely talking when he was in kindergarten, only to suddenly be able to express himself brilliantly and take college courses at the age of 8).
Also, and I hate the fact that this is true, it’s apparently very common for autistics to reject other autistics who are less “normal” than themselves, who are more afflicted with the bad sides of autism. Some of us can be just as bad as allistics. Heck, I saw a forum thread relating to autism, and one person asked, “Do you try to avoid the ‘lower-functioning’?” A ton of people said yes.
That’s something that needs to be changed. It seems people in general are freaked out by differences they don’t understand. Somehow, we need more understanding. Not just acceptance of the fact that this person acts different, but an understanding of *why*, as that’s another issue – I’ve had people assume that me being autistic means only that I have a disability, not that I have a totally different culture. Being assumed that I want the same things other people do, like casual sex, or having it not recognized that autistics tend to not feel attached to mainstream gender roles the way most allistics do, is insulting and stifling.
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Yeah, in my presentation I had a little transition between this intro and the first chapter, but there wasn’t a way to work that in. “There are ways in which autism is disabling beyond minority status,” essentially.
Though the things I’m saying are the things that so-called “low functioning” autistic advocates also write about. Amy Sequenzia famously says that autism is not the problem, it’s the comorbidities (like epilepsy, immune issues, digestive disorders, etc). And I agree with autistics who say that their more “severe” traits would not be a problem in a world that was designed for them.
The line between high and low is totally arbitrary, and usually only revolves around verbal speech. Every autistic’s level of disability, functionality, and passability is constantly in flux depending on infinite external and internal variables. I myself am often “severely” disabled, far more than most other “high functioning” autistic’s I’ve met—especially when it comes to sensory issues, executive functioning (including emotional regulation), and central coherence. But people feel perfectly comfortable saying things like “oh you’re only 10% autistic and 90% normal” to my face because I can pass fairly well for short amounts of time in certain contexts.
Disability is contextual, and contingent on infinite variables, most of which are external.
(On my phone right now, so I can’t reply to the whole comment, sorry!)
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You got a good point about the line between low and high being arbitrary. What is “low functioning”?
Is it someone who can’t talk? Those who can communicate through other means such as typing often show normal intelligence.
Is it someone with severe sensory issues, such that every sound is amplified 10x, every touch feels agonizing, and more?
Is it intelligence? I believe that’s what separates PPD-NOS from Aspergers, back when they were separate conditions.
Is it Tourettes-esque tics or comorbid conditions?
Is it social understanding and/or ability to learn social rules?
So yeah, I see how the line is arbitrary. And I know about the “pass for normal in certain situations” thing, because I’ve seen other autistics who you definitely can’t tell are autistic until you see that one telltale moment or others that jump out at you.
I also agree on the external factor being the biggest issue with disability. If society accommodates disabilities, the people can accomplish more.
Although businesses hate hiring disabled employees. Accommodations = less money, in their mind, so they won’t do it unless there’s a Disability Superpower involved. In France, where there’s a requirement that a certain percent of employees in a company be disabled, companies ignore the law and pay the fine. The fine is apparently lower than the amount of money the companies assume they’ll lose by hiring disabled people. Lovely. I hope that fine gets used to improving the disabled’s lives at least.
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[…] AS vs. NT Culture: Two Worlds, One Dysfunctional Family, by Kirsten Lindsmith. Kirsten looks at neurologically mixed relationships (between an autistic and allistic non-autistic] person)- as two conflicting cultures trying to interact, and comments that ‘All too often, the burden to communicate “correctly” is placed entirely on autistic people’. […]
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Reblogged this on Partly Robot's Funtime Blogotrope! and commented:
Being partly robot can feel like this, too.
This essay is so well done…brilliant explanations…
I appreciate your article and point of view. We discovered my husband was ASD when our daughter was diagnosed. I’m the one that lives on the alien planet, and it falls to me to put forth the majority of the effort to communicate and accommodate my loved ones. This is an act of love and sheer resolve. Our home is designed to help them be as comfortable and at ease in their life as possible. However, it is difficult to rarely receive empathy, warmth or appreciation from them, and to not receive that same effort in return for the simple reason that they aren’t cognizant that it is necessary.
In this dynamic, I disagree that it takes two to have a communication problem. It takes three, an NT partner, and ASD partner, and Autism. I look at it as a separate being, the thing that keeps the man I love from participating in an important part of our relationship.
When an NT partner does endless research, asks questions and changes their approach (like writing down information to allow for extended processing time), and the other partner does nothing because they simply can’t see or comprehend the problem, a huge rift forms. It is only helped by the NT partner doing even more, while grieving the loss of a healthy relationship and soldiering on.
Living in my ASD family’s world frequently wears me down to a nub. Thankfully, I can empathize with them out in the NT world. It saddens me that they can’t do the same.
I really do think that in many ways this struggle is harder on an NT person in an intimate relationship with an AS person (whether that means roommates, romantic partners, children, or whatever). It takes a toll on both parties, but oftentimes there are problems that the AS side won’t even notice until they’re pointed out.
Though, honestly, what you’re describing isn’t a third party of autism in the way. The issue there isn’t autism, it’s your husband’s personality. A frequent issue in neurologically mixed relationships (AS/AS or AS/NT) is that one partner will end up shouldering the entire emotional burden for the relationship—meaning either the NT, or, in an AS/AS set up, the more emotionally aware AS partner. While it’s definitely normal (and practically unavoidable) for effort to be split unevenly (40/60, or even 30/70 on some things), a 100/0 split has less to do with autism, and is a problem in and of itself that needs to be addressed.
In my relationship, there are areas where I put in more effort than my NT partner—especially dissecting problems and turning them into new rules and strategies, and reading and researching. Perhaps the split is 60/40 for the first, and 70/30 for the second. But there are also areas where my partner does much more—initiating and leading emotional discussions, analysing and correcting my behaviors/assumptions, organizing and managing projects big and small (household chores, life events, financial things). He definitely bears the majority of the emotional burden in our relationship. Plus, some things take more effort from me or him even when we are doing the same thing. Say, breaking down an opinion or emotional need into explicit, detailed communication or instruction. That’s much easier for me, even though it takes more executive functioning compensation work, because it’s something I’m already in the habit of doing. I’ve always had to communicate that way, and I don’t take anything for granted in communication because I just can’t. My partner was raised in a culture where he didn’t need to communicate that way, so it often won’t occur to him that he needs to do that to be understood, and if it does occur, he won’t necessarily know which things need to be explained.
An AS/NT relationship does take a lot of work. But if one partner “does nothing,” even when the other partner is constantly communicating, explaining, and asking for help, then it’s not because of autism. That’s an issue that NT/NT couples have for the same reasons as NT/AS couples. It’s more common when autism’s thrown into the mix, especially for autistic men, since they essentially have two cultural traits working against them with regards to ability and willingness, respectively, to take on emotional burden in relationships.
Presumably, your daughter is still young (and autistics are emotionally “younger” than we seem), but your husband is an adult. This is what couple’s counseling is good for! And these days a good many counselors have experience with (or even specialize in) autistic/”Asperger’s” relationships. Just because a person can’t see a problem, and isn’t motivated to look or work, doesn’t mean they can’t learn.
(Though these situations often involve a partner who refuses to go to counseling, and that’s when it gets really tricky to deal with…)
Have you read David Finch’s book, Journal of Best Practices? I think you would really appreciate it. Even if you can’t make your husband read it, it’s comforting to see similar situations in other couples and know you’re not alone.
When I was growing up, no one really knew what to make of me, but I remember someone once saying that I was different (and he meant it in a good way) because I “saw the world in images”. I’ve always wondered what he meant (he is no longer on this plane of existence), but I think it probably has something to do with having a much stronger declarative memory than procedural memory. Thank you for the clue-and your well-written blog.
I think the social struggles will always be there on a global level. When you are a very small minority in another culture, especially when you process the world differently, it is almost impossible for others to understand (1) how your processing differs from theirs and (2) the challenges that occur for you since they do not experience the same challenges. Their world moves very fast and is filled with too much activity to take the time to study the differences needed for a very small percentage of people, unless they are directly in a relationship with someone on the spectrum. That, plus, since your differences are not visually obvious, most people you have to come into contact with during the day are not going to even realize that you have a processing difference. That lack of awareness, plus the lack of understanding, will most always be there.
Unless the NT people have a good understanding of how autistics think, feel and communicate, they cannot possibly understand how to meet you half way. Now, on a more personal and possibly professional level, yes that small group of NT people can learn how you process and the challenges both you and them experience when trying to relate with each other. So, to a NT like me, my best suggestion is to build a close social network of a few friends, people at work, and an intimate partner who understands you very well and can learn to meet you half way. This is hard enough to maintain, simply at this small core group of people.
I have had several friends reach out to me and meet me halfway when it comes to communication. One friend in meetings will give me cues on when I need to stop talking. He also always lines out all of the stuff in a conversation that would normally be left unsaid. Another had a sarcasm cue. Many of my friends feel comfortable taking a moment to explain something to me and learning my habits. It is always such a shock to meet other people, like my family, who do not make those efforts.
Thank you for the great article. I have learned a lot.
[…] 1. Wanderlusting 2. Joan’s Pants 3. A Life Abroad 4. The Artism Spectrum […]
[…] de autisme-cultuur en de neurotypische (=niet-autistische) cultuur. Het artikel is Engelstalig. * https://kirstenlindsmith.wordpress.com/2015/04/23/as-vs-nt-culture-two-worlds-one-dysfunctional-fami… Bedankt voor het lezen! Groet, […]