Creating a Sensory Diet: Lessons from Autism

After my recent post about similarities between ASD and BPD (so many acronyms), I’ve started to wonder about the usefulness of making these comparisons. Sure, it’s interesting to speculate and helpful to see the ways that people are similar, as well as understand where diagnoses can go wrong, but as a total layperson my contributions might have to be a little smaller than all that.

So here’s what I’m going to do for myself, as well as some suggestions for how other folks can learn from the parallels between borderline and autism.

I am a highly sensitive person. I don’t mean emotionally, although that’s also true, but I’m talking about physical senses. I love roller coasters, climbing, and other moving fast/adrenaline style adventures. I’m highly light sensitive and averse. I have lots of issues with textures (this is why I don’t eat tofu). Most perfumes and scents make me sneeze. I hardly have it as bad as some people, but I’m definitely on the “strong senses” end of the spectrum.

It’s extremely common for kids on the spectrum to have sensory difficulties, whether extreme sensitivity or under sensitivity or a mix of the two in various senses. And since it’s so common for those with autism, one of the more common elements of treatment is a sensory diet, or another way to help a kid or adult regulate and organize their sensory experience.

So what I’m going to try to do for myself is create a sensory diet. Once again, I’m finding that the curb cut effect is in full force. Sensory diets are probably great for just about anyone who finds that they’re not getting sensory needs met. I’m not diagnosable, but I definitely need more movement, tactile input, and help with my internal regulation (hunger, temp). After looking at some of the resources for folks with autism, I found a starting list that sounds like it will be helpful to me:

-emotion cards

-notebook and pen

-fidgets

-fuzzy socks

-candles

-be a burrito

-climbing/monkey bars/proprioception

-hammock or rocking chair

-be upside down

-piano

-go outside: water sounds

-exercise

-swimming!

That’s just for a start, but you get the idea. The bonus? I’m also using these sensory regulation tools for self soothing when my anxiety starts to go off the rails. I find it incredibly helpful to focus on very concrete, very basic things like the senses when I’m trying to combat anxiety. I can argue with just about anything else, but sensory input gets to the heart of the matter. So instead of making a self soothing box with affirmations or art work, which has never felt useful to me, I’m creating a sensory box with soft things and fidget and reminders of how to move my body effectively.

 As a side note, I would like to invite anyone with autism to let me know if this is appropriative at all, but my understanding of neurodiversity and its tenets is that stimming/sensory needs/other things autistics speak out about are often needed by lots of people, and the more we can integrate them into society at large the better.

On the flip side, I also think there are elements of the most common BPD therapy, DBT, that could be incredibly helpful to those who struggle to communicate or identify feelings, those who don’t find socializing super easy, or those who aren’t great at self soothing. DBT gives strategies like concrete and easy steps to set a boundary, and encourages patients to identify their values and needs. It suggests that people think about how physically different emotions feel to them so that they can use the physical reactions of their body to identify and communicate an emotion when it’s happening. It suggest methods to combat black and white thinking, like making pro and con lists, or writing out/reviewing facts about what is happening. While some of these things might require adaptation for people with autism, they could enrich that therapeutic experience.

Of course it makes sense for treatments to be individualized based on the diagnosis present, but I always wonder why there isn’t more cross pollination between diagnoses. Some of the techniques used for feeding therapies could be useful for eating disorders, DBT is useful for bipolar and eating disorders, autism treatments might be helpful for lots of people who feel quickly overwhelmed. I would love to see more communication between communities within the larger mental illness umbrella.

Why I’m Defensive About My Social Media Usage

Over the weekend I was on vacation with my family and we got into a discussion about Millennials and the way Millennials use technology/social media, the ways they work, how their brains are different…basically all the normal conversations that are ever had about Millennials.

And like many of the conversations that are had about Millennials, there was some veiled and some outright hostility towards the way people my age are. They use too much technology and can’t engage in a real conversation, they can’t take criticism because they’re too sensitive, they have short attention spans (although some people weren’t sure this was a bad thing), and they’re entitled. My favorite common criticism of Millennials is that because we use technology we don’t have real relationships.

I got a bit angry at these criticisms. I’m overly defensive when the topic of Millennials comes up, and I know it. I assume everyone is anti-Millennial. I’m highly emotional about this topic.

Why?

It starts with the fact that I’ve heard nearly every criticism of Millennials that’s out there a hundred times over. I’ve read the think pieces, had friends and family members (including close family members, family friends who are like my extended family, and other folks I respect) vehemently espouse the hatred of “kids these days,” and often been told immediately after these criticisms that I have these “awful” behaviors. Of course never have these people said to me “I would appreciate if you did/didn’t do x when we’re together,” they simply say how much they generically hate a behavior and then say “oh, Olivia, you use technology a lot don’t you?”

I’m really over being continually criticized for something that’s not going to change. I’ve heard the arguments before and I’m pretty happy the way I am thanks very much.

The other problem is that I suspect many of the criticisms don’t come from a place of understanding. Especially when it comes to criticism of social media and the internet, the assertions just don’t hold up with my lived experiences and the ones that I hear my friends and peers talking about. The internet does not make it hard for me to have relationships. The internet makes it much easier for me to have relationships. I currently see my friends multiple times a week, play games (both online and in person), have interesting and deep conversations about media, philosophy, and relationships, and also connect with many of these people over the internet AND use my phone when we’re together.

It’s actually super normal for human beings to drift in their focus during interactions. Lots of people will zone out when they’re hanging out with friends, sometimes for long periods of time, sometimes just periodically for a brief moment. When you’re out in public it’s easy to be distracted by other conversations, by cool things you’re walking past, or just the world. For some unknown reason it is only considered rude to be distracted when it involves your phone or your computer. Which is weird because often I use my phone to continue an interaction, whether by looking up a piece of information we’re discussing, finding a restaurant we can continue our conversation, or by actually, ya know, continuing the conversation after I’ve left the person. Although I sometimes use my phone to manage social anxiety when I’m with people, the alternative would just be sitting there feeling awkward and uncomfortable, not engaged in the conversation anyway. The assumption that without a phone people would be engaged in all interactions is ludicrous.

I also have met some of my close friends online. I wouldn’t know someone who helped me get through serious depression if it weren’t for Facebook. I wouldn’t have met my current boyfriend. I wouldn’t be able to talk to some of the people I like the most, including people who constantly challenge me to be better and more thoughtful. As it is I interact with many of those people on a daily or weekly basis. From the outside the relationships might look shallow, but they are important to me. I feel supported by these people, and I do my best to support them. The relationships have given me more than many of my in person, “real” relationships. Sure, I like a balance, but the constant updates online remind me to get in touch, to see people, to schedule face to face time. For someone who’s a little forgetful, it’s hugely important to having relationships.

Social media is where some of the most interesting information and discussions in my life happen. I have friends who post well researched and provocative pieces all the time, articles and comics that are then discussed on their page. Like many people who blog (which is a big ol’ chunk of the internet), I use space on the internet to work out my thoughts and beliefs, I use it to get feedback from people about my thoughts, and I even use it to get used to criticism. I’ve been sworn at, yelled at, called stupid, and told I should be raped on the internet. I have become a much deeper thinker thanks to the content I’ve found on social media, in the very fashion that is often criticized in Millennials.

And nearly every person my age that I know is deeply committed to doing their best possible work. They might react hard to criticism, but that’s because they’re already their harshest critic. They always try to respond by improving though.

Guess how many of them improve? By using the internet to engage in self care. By looking up new strategies on the internet. By taking care of themselves so that they can handle the criticism ON THE INTERNET.

So yeah, I get pissed off when people call me and my friends entitled, selfish, self-absorbed, shallow, and stupid. We are the people who are using the internet, and we count. It’s not just the people who post pictures of their food or #blessed on social media. It’s also people making the internet a real and important part of their lives, in a way that’s beneficial to them and their relationships. Ignoring those as outliers is just confirmation bias. Saying that Millennials can’t take criticism or don’t engage in real discussions ignores all of this. And saying that short attention spans mean you can’t have a conversation is just blatantly false, as evidenced by the fact that I often engage in serious discussions while my phone is sitting two feet away. Sometimes I even check my phone during those serious discussions. Because I need a mental break.

And none of this is to mention that many of us make our livelihoods on social media and blogging, myself included. The idea that the ways Millennials use technology are shallow completely ignores that we are capable of having honest, meaningful relationships, holding down jobs, and finding out information ALL ON THE INTERNET.

So yeah, I get defensive. Because all these criticisms sound like to me is “you do things different so you’re wrong.” But as someone who isn’t exactly neurotypical, almost none of my life would even be possible without the internet. So get off your privileged high horse and recognize that people with different brains can’t always just do things the way you’d like.

*Once again, my Snake People extension is in effect.

Autism, BPD, Eating Disorders

This is a completely unscientific exploration of connections between a few different diagnoses that has been helpful to think about for me. This will be a long one because there’s a lot to work through, but I think it’ll be interesting.

I’ve started to notice a lot of parallels between autism and borderline personality disorder, and have also seen that eating disorders or feeding issues are incredibly common comorbidities for both of those disorders. I’m curious about why that is, whether there is misdiagnosis going on, and whether BPD and autism might actually be more similar than most people think.

Let’s start with some facts. Autism tends to be coded male. There are far more boys with the diagnosis than girls, and it can be incredibly difficult for girls to get a diagnosis of autism (girls have a much higher age of first diagnosis than boys, and studies that independently measure symptoms found many undiagnosed girls). Some people have even gone so far as to say that autism is an “extreme male brain.”

The diagnostic criteria of autism are as follows:

A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Specify current severity:

Severity is based on social communication impairments and restricted repetitive patterns of behavior (see Table 2).

B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).

3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).

4. Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2).

C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

On the supposedly opposite side of the spectrum is Borderline Personality Disorder, which is far more common in women, and in many ways is the modern hysteria. It’s diagnosed often in women who are seen as unruly or out of control, is an incredibly controversial diagnosis, and is seen as an extreme “female” brain.

The diagnostic criteria for BPD are as follows:

A pervasive pattern of instability of interpersonal relationships, self-image, and affects, and marked impulsivity, beginning in early adulthood and present in a variety of contexts, as indicated by five (or more) of the following”:

• Frantic efforts to avoid real or imagined abandonment
• A pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation
• Identity disturbance: markedly and persistently unstable self-image or sense of self
• Impulsivity in at least two areas that are potentially self-damaging (e.g., substance abuse, binge eating, and reckless driving)
• Recurrent suicidal behavior, gestures, or threats, or self-mutilating behavior
• Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability, or anxiety usually lasting a few hours and only rarely more than a few days)
• Chronic feelings of emptiness
• Inappropriate, intense anger or difficulty controlling anger (e.g., frequent displays of temper, constant anger, recurrent physical fights)
• Transient, stress-related paranoid ideation or severe dissociative symptoms

So these two diagnoses appear to have almost no overlap. In fact they appear to be complete opposites in some ways (extreme emotional reactivity vs. restricted emotional expression). One of the things that is incredibly common in both of them though is misdiagnosis and stigma.

BPD is so stigmatized that some therapists intentionally misdiagnose to protect clients from stigma. However it also has many overlapping features with PTSD, bipolar, major depressive disorder, schizophrenia, and anxiety disorders. Men are often misdiagnosed with Antisocial Personality Disorder or substance abuse. Autism is often misdiagnosed in women as ADHD, bipolar, depression, anxiety, or OCD. There are a few odd things about these high rates of misdiagnosis, the first being that two disorders that appear to be diametrically opposed could have so many similar misdiagnoses.

If we go beyond the strict diagnostic criteria, the behaviors of BPD and autism can look surprisingly similar, especially when we look at how girls present autism. From a Guardian article on autism in girls and women:

“‘Autism is seen as a male thing, and boys are often physical in expressing themselves when unhappy, whereas girls implode emotionally,’ says [Sarah] Wild [head teacher at a school for autism]. ‘Boys tend not to be interested in contact and friendship, whereas girls desperately want friendship, they become obsessed very easily if they focus on someone as ‘theirs’ – whether a girl or a boy – and they yearn for boyfriends.’

Girls with autism are likely to worry about body image and get very involved with TV series and celebrities, says Carol Povey, director of the NAS’s centre for autism. And there is a clear association between autism and eating disorders, as a report by Cambridge University’s autism research centre, led by Professor Simon Baron-Cohen, notes.

While boys tend to be diagnosed as young as three, late diagnosis can be a problem for girls, whose behaviour can be dismissed as “teenage hormones”. ‘They are full of emotion and implode into isolation and depression if things go wrong,’ says Wild. Things seem to start going really wrong at about age 13, she says, when many become school phobic.”

These differences end up creating a very different picture of autism in girls and women than in men and boys, one that looks far more similar to BPD. Both diagnoses can include serious self harm or suicidal ideation, controlling behaviors (especially in relationships), black and white thinking, feeding issues/eating disorders, trouble with social situations (including anxiety), depression, and sensory issues. For those with BPD, life often feels like it’s lived without an emotional skin, and that can come with strong reactions to sensory stimuli. For those on the spectrum with strong sensory seeking needs, behaviors can start to look impulsive. BPD tends to be diagnosed during the teen to early adult years, and girls also are likely to get an autism diagnosis in later childhood to early adulthood. And in both cases, the lack of a diagnosis can be a huge source of frustration, confusion, depression, and welled up emotion.

Another similarity is the diversity of presentations of each of the two disorders. Because of the way criteria are structured within BPD, it’s possible for two individuals to both have the diagnosis and only have one overlapping trait. Autism is similar in that it affects multiple areas of functioning, which means there are thousands of different permutations of symptoms and behaviors that can appear.

Both BPD and autism are distinctly underdiagnosed, with more men having trouble getting a BPD diagnosis and more women struggling to get an autism diagnosis. From http://psychcentral.com/news/2009/05/25/borderline-personality-disorder-difficult-to-diagnose/6070.html

“The study included 70 adults who met the criteria.

All had been given a diagnosis from the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) in the past and had also seen a mental health professional in adulthood or been prescribed a psychotropic medication.

Yet, 74 percent of the patients who met the criteria for the condition had never been diagnosed with borderline personality disorder in the past, despite an average of 10.44 years since their first “psychiatric encounter.”

What’s hisface examines many of the ways that BPD and autism can look similar: explosive anger or meltdowns, intense relationships mixed with difficulty getting close to many people, serious miscommunications. If you look at an individual who self harms, has serious anxiety and anger issues, attaches to one person and has difficulty connecting with others, is incredibly sensitive, and who sometimes engages in intense and seemingly odd behaviors to fulfill stimulation seeking, would you assume BPD or autism? Because it could go either way.

Of further interest is the fact that BPD has incredibly high rates of comorbidity with eating disorders. There is good evidence that women with anorexia have autistic traits, and that individuals with autism are at high risk of developing eating disorders. Some studies have even shown comparable levels of emotional processing and executive functioning between those with anorexia and those with autism. Feeding disorders are also incredibly common with autism.

Most of my interest in autism came initially through the lens of eating disorders. Difficulties with textures, rituals around food, OCD, and other highly controlling behaviors are incredibly common with eating disorders. These kinds of control oriented behaviors are hallmarks of autism.

Control is not a word that most people associate with BPD, but I’m not sure why. In my experience, the more out of control someone feels, the harder they try to cling to control. All of the BPD symptoms that I have are the things that have pushed me to develop intense rituals and rules for myself, out of fear that any deviation will lead to complete chaos. Others who have comorbid BPD and eating disorders that I have spoken to (entirely anecdotally) have also felt that they use the control of the eating disorder to cope with the intensity and chaos of the BPD.

Also anecdotally, many of the folks that I’ve talked to on the spectrum talk about having rituals so that they can feel more in control when they are overwhelmed by extreme sensory input or because of difficulties with theory of mind. The OCD tendencies that I have and the information that I’ve read about OCD indicates that rituals, control, and rigidity in OCD also stems from a fear of being out of control, a fear that the world could change or fall apart or go wrong in some unknown or drastic way if you do not engage in the rituals. Chaos is often what leads to extreme control.

For those on the spectrum, that often comes in the form of social interactions that make no sense and sensory input that is overly intense. I’ve also heard many on the spectrum say that in contrast to the assumption that they have no empathy, they actually have an excess and simply can’t figure out how to make other people happy or feel better. The emotional elements of this explanation ring familiar to someone with BPD: other people seem unpredictable, swinging from perfect to evil in a day. You just want to be good enough, kind enough, the best possible person so that no one will be sad or unhappy or angry or want to leave you.

Especially of interest to me are the sensory elements of BPD, which I could find almost no research about at all. BPD is well known for coming with extremely strong emotions, but in my personal experience, that often comes with sensory sensitivities as well. Emotions aren’t just experienced in the head: they’re experienced in the body. I have to regulate my food and sleep extremely carefully in order to be functional, I have strong reactions to textures, and as someone who is often overwhelmed by my emotions I can’t handle crowded, loud, or otherwise overwhelming places very well.

And when you add in an eating disorder to BPD, you get some serious sensory sensitivities in the form of taste, smell, and touch (often aversions). All together it makes me wonder if BPD and ASD are all that far apart, or if they both might be pointing to a variety of disorders that look similar but have different etiologies. I wonder if some of those disorders overlap, and gender is playing a big role in who gets what diagnosis. I wonder whether concepts like a sensory diet could be helpful for those with BPD or whether learning concrete social skills like setting a boundary could be helpful for those with ASD.

Obviously all of this is speculative, and it seems unlikely that BPD and autism are the same thing. But I do think that the strict delineations between personality disorders and autism, or simply the received knowledge of which disorders are “like” which other disorders might not be helping folks get accurate diagnoses or useful treatments. There are more crossovers than appear at first glance.

No One Owes You Time

I’ve seen a few articles floating around about how Snake People are bad friends/people/relationship havers because they RSVP ‘maybe’ too much and they blow off plans by saying they’re too busy. Essentially, many of the posts about new social norms suggest that Snake People don’t prioritize their relationships and often telegraph that they don’t care about friends and family by saying they’re busy, by saying ‘maybe’ (and waiting to see if other plans come up), or by forgetting about plans.

I understand this frustration. I’m often the one in my group of friends that’s wrangling everyone together and it’s no fun at all. But I also understand that I am not the #1 priority of everyone that I know and care about. It’s incredibly self absorbed to assume that other people should always make time for you or that they will always know ahead of time whether they’ll be healthy, have energy, or not be dealing with a crisis.

No one likes flaking on another person. I am guilty of often flaking, and I feel awful every time I do it. So why do I continue to do it? Because I know that I am in full control of how I spend my time, and that I get to balance my needs and priorities against the needs and priorities of the people around me.

No matter how close we are, there is no point at which you have a right to my time and energy. That may sound harsh, and in practice there are repercussions to cutting someone off in that way, but every time another person chooses to spend their time with you, they are giving you something because they want to, not because they have to. There is no “you didn’t spend time with me” police that will come and discipline them or drag them to your side when they haven’t spent enough time with you. Everyone’s time is their own to use as they decide.

When someone else tells you that they’re busy it does in fact mean that they have prioritized something else over you. And that’s ok. We’re fine with this if it’s work or some kind of other Serious Obligation, but for some reason self care never rates high enough to be considered a priority. There are things in people’s lives that need to happen, like sleeping and eating and earning a paycheck and fulfilling the art/exercise/hobby needs and sometimes just being alone. Of course friends are in the mix, but simply because hanging out involves another person does not give it Ultimate Power over scheduling. Making plans with another person adds a fair amount of weight to following through on those plans, and the gift that your friends gives you when they ask to see you adds weigh to their request. But it’s never a guarantee.

I understand how frustrating it is to get a clear blow off when someone says maybe or changes plans at the last minute. But instead of blaming awful, selfish Snake People, I’m far more inclined to blame a culture that makes open conversation about mental health and well-being taboo.

Imagine this: you make plans to go see a movie with your friend and they text you day of and say they’re sick and can’t make it. Is your first instinct that they’re a flakey awful person, or that they’re sick and should take care of themselves? Most likely the second, although there are well documented instances of people being shit to individuals with chronic physical illnesses as well as mental ones.

But if you change that scenario to texting the day of to tell your friend that you’re having a small attack of the jerkbrains, or you just don’t feel up to leaving the house, you’ll get thinkpieces about the selfishness of Snake People. Even worse if you say that you’re not feeling up to it and then go do something that you are feeling up to, like being with a close family member, or spending a low key hour or two with a partner. Or if you aren’t sure whether you’ll have the energy and answer with a “maybe,” only to later decide you can’t quite make it happen.

Today I responded to an offer to hang out with “I’m kinda sick today but I’d like to make it. I’ll do my best, but I might be asleep.” Most people understand that this is me openly letting someone else know that I have a higher priority in my life, but that if possible I’ll put them up there. Most people aren’t offended, because we know that health and safety should be people’s top priorities (and for the people who don’t get that, fie on thee I say!).

I do have some friends who understand openness around mental health well enough that I can let them know I’m having a rough day and I might try to make it to see them, but I might need to stay home. And that is my right. My friends also have the right to get annoyed or stop trusting my plans if I do this repeatedly and flippantly. What’s important is that we can talk openly about what we want out of our relationship and our lives. What’s important is that  each of us has the right to set their own set of priorities.

I think that most non snake people would be surprised to find how highly many people my age prioritize relationships and friends, and how often we do make time or drop everything to see our people. But our friends also show respect and care for us by understanding that they are not the only things in our lives. And the more open we can be about why we need to prioritize something else (such as because of mental health or chronic illness), and the more people are willing to negotiate, the better relationships will be.

 

*My Google Chrome extension that changes the word m illenials to Snake People apparently works in post, which is why this post refers repeatedly to Snake People. I see it as an improvement.

First Person Narratives, Objectivity, and Scandals

Over the weekend I had a realization.

I was watching a panel focused on autism called Thriving on the Spectrum, and found myself frustrated with one of the panelists who seemed to be fairly defensive and called out other panelists a number of times when they didn’t agree with her. She was vocally antagonistic to parents of autistic children, seemed extremely upset that other panelists didn’t completely condemn Autism Speaks (instead saying that they have increased awareness but are problematic), and seemed quite agitated for the whole panel.

A few days later, the same individual posted a long comment on a mutual Facebook group, detailing the ways that the other panelists acted inappropriately. She called on convention organizers to do better, to not include parents or spouses of those on the spectrum, and to police the panels better, even going so far as to suggest that some of the behavior was abusive or condoned abusive behavior by others.

I have tried throughout my time on the internet to read and/or listen to the first person experiences of people who don’t have the same privileges I do. I have tried to take them at face value and accept that someone else lived through something that I didn’t. First person narratives are often privileged because the individual was actually there, because none of us know what happened except for the person telling the story. And it’s certainly true that no other person can tell you that your experience was wrong. You experienced what you did.

I strongly want to distance myself from those people who suggest first person narratives are suspect because people lie. This is not a post about people lying. This is a post about objectivity.

Now some people out there might look at this pair of experiences and say that I am the correct person because I am more objective. I was not emotional or upset, I wasn’t personally involved in anything that was happening, I spoke with someone else about the panel afterwards and verified my perceptions. The person on the panel is not neurotypical, she was agitated, she was “oversensitive.” Of the two of us, my perspective is the socially validated one.

The problem of course with this set of assumptions is that neither one of us is objective. As important and helpful as first person narratives are, they are not great at giving other people a clear and unbiased collection of facts, and they’re really not supposed to. They are one experience.

Where this seems to become a problem in my mind is when someone uses a single personal experience as a source of outrage or scandal, or when prior individual experiences start to overwhelm current experiences. Of course we can never have complete objectivity, and of course we all view things through the lens of prior experiences. And in the moment all we can do is use the current information we have.

But when it comes to blog posts, social media, complaints, and formalized repercussions, it seems highly important to me for everyone involved to recognize that immediate impressions are nearly always more extreme than thought out and measured responses. If you are going to publicly object to someone’s behavior, it seems pretty important to just do a double check of what happened and why it’s unacceptable, as well as double checking with other people who were there to ensure that you’ve got the events right.

These might seem like really obvious statements. And I think on some level most of us know these things. I hate the idea that we live in the midst of an ‘outrage culture,’ but I do think that there are some ways people pushing for social justice and change can do a better job, and this is one of them. No, being angry or having emotions doesn’t make your perspective less valid. But that also doesn’t mean we have no responsibility to double check and question our own perceptions, because human memory is faulty and people aren’t objective.

Experiences like this not only lead me to question my own perceptions, but also lead me to feel a lot of suspicion towards first person accounts, leaving me wondering if all the people who report microaggressions etc. are exaggerating. And then I remember that my first, emotional perception might be flawed and I think again.

And I suspect that my perception is being colored by my own privilege. And so I take into account the facts of multiple hundreds and thousands of experiences of other people. And so I don’t make a complete ass of myself by tromping all over the experiences of someone with autism (I hope).

Good gosh I love meta cognition.