2/18: Sensory Processing

I do think that the “intense world theory”– at least, the idea that autistic people feel things very intensely, if not the rest of it– does accurately describe some aspects of autism. The term “sensory processing disorder” refers to that idea specifically.

For me, it explains a lot of my trouble with noise and distractions.

It’s very difficult for me to separate sounds I want to listen to from background noise. What some people call the “cocktail party effect”— the brain’s ability to automatically filter out and focus on the most important or relevant sounds– is basically nonexistent for me.

I know that I don’t have hearing loss– I’ve had the basic kind of hearing tests, that measure whether you can hear very faint sounds at various pitches. I do fine on those. But put me in a noisy restaurant and I might as well be hard of hearing. Levels of noise that other people seem to consider acceptable affect me much more. I mishear words (or just find them completely garbled) in every sentence. When I’m very tired/stressed/etc., it seems like I have the opposite of the “cocktail party effect”– the more I try to listen to one person’s voice, the louder everything else gets, drowning them out.

Here is another autistic person’s description of similar problems and the stress they can cause.

This collection of problems can be described by a relatively new term, Central Auditory Processing Disorder. There’s some debate about whether CAPD should be considered a standalone condition, or whether it only happens as a symptom of autism or some other wider condition, but the existence of people with problems like mine is pretty clear.

My problems with hearing are the biggest way that sensory processing issues affect my life, but they can manifest in a lot of different ways. The DSM criteria mention hyper- and hypo-sensitivity, meaning that autism includes finding sensations both unusually overwhelming and unusually mild. Some autistic people are very sensitive to light, or noise, or scent, and find that, for example, light levels that other people consider normal will hurt their eyes. Another autistic person who is hyposensitive to light would find even very bright lights neutral or pleasant, and might have to be warned not to stare at the sun.

Many autistic people also have a few specific sensations (sounds, smells, textures, anything) that they strongly dislike, out of proportion with a normal preference. You know the “fingernails on a chalkboard” sound, that makes so many people cringe? Many autistic people have that kind of reaction to other things, from the buzzing sound of an electric fan to the texture of boiled vegetables to the way the tag on your T-shirt pokes the back of your neck. This post by Cynthia Kim has more information about sensory processing issues in general.

(Edited to add: There is a specific word for having this kind of strong negative reaction to a sound: misophonia.)

Personally, I’m pretty lucky in this realm. I don’t have very many of these sensitivities, and those I do have aren’t too strong or are easy to avoid. This post was me thinking about my sensory likes and dislikes.

1/18: Why Do I Think I’m Autistic? Theories of Autism

Why do I Think I’m Autistic?

In order to explain that, first I have to expain some things about what autism is.

First, autism is a cognitive disability– a difference in how a person’s brain works. It’s something a person is born with. Beyond that, it gets a little harder to define.

One of the differences between autism and the mental illnesses you might be more familiar with, is that the scientific study of autism started with young children who did not begin to speak and interact socially at the typical age. Most information on autism reflects those two things: the typical autistic person is assumed to be (a) a small child, and (b) unable to communicate. Resources about autism (not to mention the official diagnostic criteria) have generally had descriptions of what autistic children look like to others— how they play with their toys, how they interact with other children, the elementary-school-level skills they may lack or struggle with— but usually don’t have much understanding of what being autistic is like from the inside.

Diagnosing someone with, for example, depression, is mainly done by asking the possibly-depressed person about their internal experiences— how they feel. (Do they feel less interest or enjoyment in their hobbies? Do they feel fatigued and lacking in energy? Do they have thoughts of suicide?) Diagnosing someone with autism is mainly done by asking the parents of the possibly-autistic person about their actions— how they appear to others.

People have only started trying to correct this problem comparatively recently. Because of this, a lot of the things that I cite as “symptoms” of autism or common autistic experiences may not be in official academic descriptions of autism, even though they are reported by many autistic people. I believe that I am autistic by the current DSM definition, but a lot of the things that led me to that conclusion aren’t explicitly described in the DSM.

So, what is autism?

Let’s just start with the DSM 5 criteria first. The DSM (“Diagnostic and Statistical Manual of Mental Disorders”) is a big book of criteria for different mental illnesses, learning disabilities, etc., put out by the American Psychiatric Association.  It’s the basic standard that psychologists in the US use to diagnose people.

(as seen here.)

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Diagnostic Criteria for 299.00 Autism Spectrum Disorder

– 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):

        — 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.

        — 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.

        — 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.

– 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):

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

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

        — 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 interests).

        — Hyper- or hyporeactivity to sensory input or unusual interest 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).

– 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).

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

– These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be beloiw that expected for general developmental level.

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So yeah. That’s that. Certain types of “deficits in social communication” and “restricted, repetitive patterns of behavior” that are significant enough to cause problems in one’s life and have been around since early chlidhood. It’s kind of underwhelming, isn’t it? All the traits it describe seem pretty clear on their own, but how do they fit together into a bigger picture? How are they related? They don’t really give you an idea of what an autistic person is like in real life.

I know it’s pretty strange to write about a thing without having a clear definition of what it is, but that’s what I have to do here. Nobody is certain what causes autism (although there are a lot of theories) or even what autism consists of physically— is it a physical difference in some part of the brain? Probably, but nobody is certain what kind of difference, or where, even before we get into what could cause it. So, if you’re wondering— “What ties all those traits together? What one thing causes all those different traits?” I don’t have a definite answer for you.

Many psychologists have tried to answer those questions, of course. There’s no single generally accepted theory, but a lot of them revolved around the idea that autistic people’s brains process the information from our senses differently than most people’s brains do.

Here are some of the more popular ones:

Intense world theory: Autistic people are unusually sensitive to all sorts of things— everything we see, hear, feel, and think just seems more intense to us than it does to most people. Basically, our brains are too good at taking in information, so good that we get overwhelmed by the amount of input.

You can read an interview with Henry and Kamila Markram, the developers of the “intense world” theory, here.

Weak central coherence theory: Autistic people lack the ability to merge a lot of details into a coherent overall picture, but are skilled at dealing with individual small details.

This theory was developed by Uta Frith to explain why autism seems to cause significant difficulty with some kinds of tasks, but can also come with high IQ scores and excellent skills in other areas. (These are usually called “savant skills” or “splinter skills” and I’ll talk about them later.)

Psychologist Simon Baron-Cohen has come up with several different theories of autism over the years, which revolve around empathy and emotional understanding. The most recent version is called Empathizing-Systematizing theory and says that people can be categorized into two groups: those who focus on emotions and human behavior (empathizing) and those who focus on concrete facts and the behavior of physical systems (systematizing). Autistic people, in this theory, are highly focused on systematizing and very lacking in empathy.

If this sounds like the common idea that feminine empathy and social ability are incompatible with masculine skills in math and science, that’s because it is. Baron-Cohen explicitly links the two categories in his theory to gender, saying that typically men are systematizers and women are empathizers, and has previously argued that typical autistic traits are more extreme versions of typical male traits (the buzzword if you want to learn more about this is “extreme male brain”.) Here is an article about this theory that’s intended for the general public.

I’m just going to be up front and say that I don’t particularly like any of these theories. I don’t think any of them completely explains autism, and in particular I think Simon Baron-Cohen is a sexist asshole. I think there needs to be a lot more research and a lot more listening to autistic people before anyone can claim to explain autism, and there may not be one single explanation. It may be that the current definition of autism groups together people who have similar problems but different underlying causes.

I do have one more link for you, though. If you want to think more about this issue of collecting all those different autistic traits into one explanation, and if you want to see an autistic person’s take on it, I recommend  “Conceptualizing Autism” by Anne Corwin.

I’m feeling all worried and conflicted about a friend of mine. She’s lonely and stressed and struggling, and I’ve been chatting with her and comforting her, and it’s just a little weird because I don’t really KNOW her? I’ve barely had one actual personal conversation with her before this.
She’s been completely, 100% understanding and accommodating when I’ve set limits or said no to her, but I can’t shake this worry of “What if she wants more from me than I can give?” And I’m not completely sure why.

Spent the afternoon and evening helping a friend move (or, more accurately, take non-essential stuff from the house she already moved out of, to a storage unit.) I’m very tired physically and mentally, but I met some nice people. Including a guy who officially takes first place among everyone I know in having his “things I can, practically speaking, do” threshold truly confoundingly close to the actual absolute limit of what he can do.

Relatedly, props to M for understanding that “he was in the army” functions as an explanation for that.

The odd thing is

You’d expect following a quickly-moving thing with their eyes to make someone dizzy.

I more often get dizzy by having moving things in my peripheral vision while I focus on something that’s still– e.g. reading text with moving gifs/video in the sidebar next to it, watching something mostly-stationary on video while a text crawl moves across the bottom of the screen.

I know I use my peripheral vision to ground myself and know where I am. That’s why I don’t like looking at a bright computer screen in a dark room– because when my eyes are adjusted to the bright screen, I can’t see any details in the background.

I guess the same thing applies here– my peripheral vision gives me my sense of what’s stationary, so moving things in it mess me up.

On the one hand:

The instructions are very long, strangely organized, and hard to navigate, and it’s neither your fault nor mine that (a) we were looking at different sections, and (b) the instructions say contradictory things in different sections. That’s really, really not our fault.

On the petty, irritated hand:

NO U learn how to use control+F.

Short notes

I spent a while in a moderate state of anxiety yesterday, so it sort of makes sense that I’d be all blah and tired today, but it’s still annoying.

(I ascribe the blah of yesterday morning/the day before to heat and too much time spent bent over my laptop.)

Tomorrow (June 18) is supposed to be Autistic Pride Day. I wish I’d known about that further in advance. I kind of want to “come out” about it on Tumblr. I still don’t know how Sparkly feels about the idea– we never got around to talking about it– and I don’t want to make em uncomfortable, but I do want to tell people on Tumblr sooner or later. So I’m conflicted.