Autism and Empathy and Confusion.

Insisting Autistics have Empathy When You Don't Know the Definition of Empathy

This post is a response to someone who asked what I thought about the post titled "Autism, Empathy and Boston". This is a post from a blog that I value written by a person whom I find valuable. It is beyond the scope of this post to get into much detail about autism and empathy, but I hope my point is made and those with interest in topics briefly described here can engage in further conversation in comments to the post or otherwise.

 "Autism, Empathy and Boston" starts with this:

The pervasive thought that people with autism don’t have empathy is not true for me, and I suspect not true for many or most autistics.  Lack of empathy is in the realm of psychopathy, and I am not a psychopath, as others with autism are not.

So, when the bombs in Boston happened, I felt.  I felt a lot.  I felt pain in my chest and stomach because people had lost limbs.  I felt sad that people in Boston and across the country feel unsafe like I did.

Is that empathy?  I don’t know how to define empathy.

The author writes a post about empathy insisting the following:

• She has empathy, though she is autistic and it is often said that autistics have difficulty with empathy.
• She suspects many or most autistics have empathy.
• The "lack of empathy is in the realm of psycopathy".

But she doesn't know how to define empathy. Aye, there's the rub. 

In Autism, Empathy and Boston, Eileen Parker gives examples of several concepts. Some of what she describes is cognitive empathy, some is emotional empathy, some is sympathy, some is just her own fear and distress that does not fall into any of those categories. Many professionals say that people with autism have difficulty with empathy. And people with autism (and often their parents) insist, sometimes angrily, that they are very empathetic. Both are correct.

Defining Empathy

Merriam-Webster defines empathy, in the context used here, as "The action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also: the capacity for this".

The simple dictionary definition of empathy is usually sufficient for casual discourse. But this definition is not sufficient for the interplay between professionals and autistics on this topic. For understanding on this level, it is vital for autistic people (and their parents) to have a deeper understanding of the clinical use of the term "empathy". For this purpose, the concept of empathy is thought of in (at least) two different aspects, cognitive empathy and emotional empathy.

Cognitive Empathy

Cognitive empathy is knowing what another person is feeling and having some insight into the thoughts that caused the person's emotional state. Most people have the ability to connect with others through cognitive empathy. Narcissists, sociopaths, and other master manipulators often have keen cognitive empathy skills. This group, however, lacks emotional empathy and thus has the ability to inflict great harm on others without having any sympathy for those they harm. Many people with autism are exactly the opposite. Many autistics have difficulty with cognitive empathy, though they usually have emotional empathy. I'm an example of this. However, cognitive empathy can be learned and enhanced. Again, I'm a case on point. Although my cognitive empathy skill is not at the level of many neurotypicals, I have built my skill in this area through practice and study designed for that purpose.

Emotional Empathy

Emotional empathy (sometimes called "affected empathy") is the ability to feel, often physically, what another person is feeling. This ability is part of what most people are referring to when they speak of "empathy". Some people who experience emotional empathy are not able to manage the distressing emotions they feel as a result of this empathy. These are people are sometimes described as "too sensitive" or "overly dramatic".  Not having the ability to regulate emotions from emotional empathy can be exhausting for the person experiencing the emotions and the people around them. However, it is usually possible to learn to regulate these emotions just as people regulate emotions triggered by direct experience (rather than by empathy).

Empathy and the Brain

These two types of empathy have been the subject of research. It has been shown that cognitive and emotional empathy are processed differently in the brain.  The lower brain is the realm of emotional empathy and the higher brain is the realm of cognitive empathy. If you want to read studies on this, you may want to start with Two systems for empathy: a double dissociation between emotional and cognitive empathy in inverior frontal gyrus versus ventromedial prefrontal lesions. For many, I suspect it is enough that this simply seems to "make sense".

Eileen Parker:  Good Blog, Good Company, Good Person 

Eileen Parker is the author of the post I referred to above. Her blog is called Inside the Autism Experience.  She also has a company that sells weighted blankets. I've interacted with her privately and in public forums. I want to be very clear. From my interactions with Eileen Parker, weighted blankets, and Eileen's blog, I can say that I like all three. 

Eileen is an autistic woman and has Sensory Processing Disorder. Hey, I am too! And yes, we have much in common. However, Eileen and I are also very different. Eileen, like the blankets she sells, is rather cozy (definition 1 below). I am very different from Eileen in that I am also cozy (definition 3 below).  *I love to play with words.*

Definition of COZY

1

a : enjoying or affording warmth and ease   

b : marked by or providing contentment or comfort 

2

a : marked by the intimacy of the family or a close group

b : marked by or suggesting close association or connivance 

3

: marked by a discreet and cautious attitude or procedure

Eileen's blog is very informative and I enjoy reading it. She usually comes to the topic of autism and sensory processing issues from an emotional...feeling...perspective. I usually come to the topic of autism and sensory processing issues from a cognitive...rational...perspective. Two different and valuable perspectives that complement each other.

So lest you think I am disparaging Eileen Parker by writing this blog post, I state without reservation that she helps me stay balanced. She helps me understand some things that I have difficulty figuring out on my own because of my weak cognitive empathy skills. I value her perspective and I value her.

Shedding some light on the topic of light and Sensory Processing Disorder: Part I

I was asked what sort of lighting I would recommend for the home of a child with Sensory Processing Disorder. People with Sensory Processing Disorder process light differently than the general population and all people with Sensory Processing Disorder will not process light in the same way. What I offer here is my experience in the hope that it can be…enlightening. 

If you ask, I can certainly get into some detail or direct you to sources of information with the details of things like mercury verses electronic ballasts and binocular verses monocular vision and refraction verses reflection of light. I find it interesting…and I find that most people find it mind numbingly boring. So, for this post, I'll  toss in some “Did You Know?” references, but other than those I’ll try to stick to the basics of my experiences.

Lighting issues, especially flickering lights, intense light, contrasts, and certain colors, can cause in seizures, headaches, nausea, dizziness, fatigue, blurred vision, eye strain, reduced visual task performance, and a continuous level of distraction and stress in people without sensory processing disorders. For people with Sensory Processing Disorder, it is often best to assume these results are not just possible, but likely and to proactively assess and address common lighting issues when possible.

I’ll mention some of the issues that have had the most noticeable effect on me and what I did to avoid or at least lessen the source of the problem. Lighting issues that may not usually bother me will be more likely to cause stress if I am tired, I have low blood sugar, or I am exposed to the issue for an extended time. I suppose this is true of almost anyone and anything, but I still need to remind myself from time-to-time, so I’ll mention it here too.

Flickering/Flashing Light

Problem

Since flicker or flashing light is a problem that many people know about and in some ways the most common, I’ll start with this. Many people with some knowledge of autism and sensory processing issues have heard the frequently repeated fact that people with sensory processing issues (including most autistic children) can become stressed around bright lights and the flicker of florescent lights. And many people accept that as the full scope of the issue when, in fact, the issue is much more complex. Reactions to flickering or bright lights may depend on the light’s brightness, the contrast of the light or light source with the surrounding area, distance between the individual and the light source, whether the person’s eyes are open or closed, how often it flickers or flashes and the wave length of the light. I won't get into all of the factors. I mention them to make the point that it's just not that simple.

Often people will refer to the flicker of fluorescent lights at the villain of light flickering. (And yes, I find it annoying when someone just says this because they heard it or read it and not because they have any experience or knowledge of the facts...because the facts are changing and so the truth is changing on this issue.) This is mainly because older fluorescent lighting systems used magnetic ballasts that allowed for varying electrical loads (and a humming noise that some people could hear) and operated at a frequency that caused a flicker that many people could see. New fluorescent lamps usually use electronic ballasts that operate the lights at a much higher frequency (and make much less noise). Although the flicker may not be visible, it can still be detected by some people, which can make for a frustrating time when trying to identify the source of stressors.

Some people think that they can avoid the flicker problem by switching to LED lights. Not so. LED lights also flicker. Often the flicker of LED lights is worse than the flicker of new fluorescent lighting systems. Halogen lights can also flicker. Old bulbs and old or faulty light fixtures tend to cause more flicker problems. However, sometimes it’s a technology issue. As the technology gets better, the flicker problem is slowly going away on fluorescent, LED, and halogen systems.

The combination of lighting fixtures and bulbs is extremely complex. If someone in your home is particularly sensitive to flickering, incandescent light, while not the choice of environmentalist, is an option for a light source that does not flicker.  

Flicker doesn’t just come from light bulbs. It also comes from some computer monitors, televisions, and video games. It is caused by moving water (aquarium, pet’s water dish, etc), light through leaves in trees, ceiling and other bladed fans, and a myriad of other sources. I include light through window blinds with flicker because, with an estimated 30 percent of people, patterns of alternating dark and bright areas have the same effect as flickering/flashing light if there are more than 5 pairs of stripes (if they are moving) and more than 8 pairs of stripes (if they are still). Look for and address these sources of flicker too.

Did you know?   

Brightness enhancement, also known as the Broca–Sulzer phenomenon, refers to the fact that a flash of light of short duration may appear up to five times brighter than it looks when it is seen as a steady light. So the flicker/flash issue may be related to the brightness/intensity issue.

My Solution

I had new recessed lighting fixtures with dimmer switches installed in my kitchen and living room. I use the new compact fluorescent bulbs and I cannot see any flicker and do not observe any stress from them. I tried LED lights, but they flickered when the dimmer is set on low intensity. I use incandescent bulbs on a dimmer switch in my dining room chandelier and in my bedrooms. I use LED lights in the bathroom as we do not have dimmers there so the flicker is not a problem for me.

Cathode ray tubes in old computer monitors were the cause of flicker. Now I have newer monitors that do not use that technology (if you still have an older monitor, you can set the "refresh rate" higher to reduce the flicker) and flicker is not an issue. Same with televisions. However, there is still the issue of what is showing on the screen flickering. Some things that I have done that help with this issue are:

• sit far back from the screen (less of the visual field is occupied by the flashing, so the brain is not as affected by the stimulus)
• reduce the brightness of the screen (there is a control for this on most televisions)
• keep the lights on about the same brightness as the screen (to reduce the contrast between the screen light and the background light)

Did You Know? 

If you cannot reduce the flicker, leave, or remove the source of the flicker, it usually helps to cover (not just close) one eye if the flickering is of short duration; some people wear an eye patch when they know they will be around a flicker for a long time.

Placement of light sources

Problem

You can't see it from all angles unless you see it from all angles.The placement of your lights may be fine for you, but for someone of a different height, it can be a source of great discomfort.  If you have small children in your home, this is an issue you may want to consider. For example, sometimes you will see a lampshade where a shorter person will be looking right at the bulb. You may have recessed lights or track lighting that is always above your line of sight, but when the children look up at you, they may then look right into the light. You may have your horizontal window blinds set so the sun does not go into your eyes, but it is directed into the shorter person’s eyes. They may not be able to tell you or may not even realize that this is affecting them.

Solution

Turn on all the lights, get at about the height of the people in your home you are concerned for, and go around your home. Do this again for natural light by opening window coverings at different times of the day and making the same exploratory trip in your home. See the sources from the point of view of the shorter (or taller) person. Make adjustments where needed. You can simply alter the placement of the light sources in some cases or use frosted light bulbs, baffles, shades, and other items that are sold to reduce or eliminate these problems.

Placement is also important as it relates to contrast and reflection. I’ll address that in the corresponding sections.

Intensity and Brightness of Light

Did You Know?  

Brightness is subjective. The objective measure of the light from an object is called luminance. Here is an informative article on the topic of brightness and luminance.

Problem 

People with Sensory Processing Disorder often experience light to be brighter than other people perceive it to be. For some, it takes longer to become comfortable switching from a dark area to a light area. In addition, bright lights may be more stimulating and being in a dimmer atmosphere more relaxing. Of course, this may be true of most people, but it is often especially true of people with sensory processing issues. 

My Solution

Dimmer switches and night lights. I have dimmer switches in the kitchen, dining room, and living room. This allows me to have a lot of variation in the level of intensity of the light as various times. When just getting up in the morning, I use dim light increasing gradually and the opposite in the evenings.  The lights inside my home can vary in intensity depending on my mood and needs. I also have different lighting sources with different intensity bulbs in them, 3-way bulbs, and window coverings that allow for variable light entry. 

Brightness is also a consideration under the topics of flicker, reflection/glare, and color.

For next time...

In Part II, I'll writing about color, contrast, reflection/glare, light sources and their relationship to each other, and how these topics relate to light and Sensory Processing Disorder.

Is there something wrong with your brain?

I started reading a blog called Autism From the Lighter Side a few months ago.  I thought “Great, a mom who tries to see the humor in things. She doesn’t sound like she wants to be a Martyr Mom or a Victim Mom or a Madonna Mom." And I’ll probably stop reading the blog. As an autistic person, reading what appears to be her solidly neurotypical view of things and what often appears to be oblivion to the autistic experience is painful to me.  

I’m writing this in the hope that it will be useful for some people to read what at least some autistic people thought when then read the post titled Something Wrong With My Brain from the Autism From the Lighter Side blog. The italicized words are from that post. You can read it in its entirety here.

The week before the school’s winter break, my son was obsessing about the xBox controller.  We had lost it.  Here’s a sample of our conversation (while I was cooking dinner, of course):

It does not sound to me like her son “was obsessing about the xBox controller”.  It sounds to me like her son was trying to make sense of the discord between what his mother said and what she meant relating to the games he could play. The MOM was focusing on the xBox controller.

Mom: “I don’t know where the controller is!  Play a Kinect game… you don’t need the controller.  Your body is the controller.”

Middle Guy: “But you said I could play whatever game I want and I want to play Lego Starwars and that’s not on kinect so I don’t want to play kinect and you said I could play whatever I want.”

“I know you want to play Starwars-”

“So let me have the controller!”

“-and I don’t know where the controller is, so you can choose a kinect game!”

“But you said I could play whatever game I want and I want to play Lego Starwars and that’s not on kinect so I don’t want to play kinect and you said I could play whatever I want!  Why did you change your mind?”

“I didn’t change my mind, we just can’t find the controller.  So your options are playing a Kinect game or reading or going outside.”

She said he could play whatever game he wanted.  Then she is quickly limited his options to Kinect games. So, for all practical purposes, she changed her mind.  The REASON she changed her mind is because she couldn't find the controller. That does not change the fact that she said “…whatever game you want…” and changed that to say “…you can choose a kinect game…”

“But I don’t want to play a Kinect game, I want to play Lego Star Wars and….” and over and over and over.

Finally, I said, “I’m done. You know your options.”

Silence.  Then, he asked me, “Did you change your brain?”

That’s what he was saying at the time rather than “change your mind.”  At first I considered saying, “No, I just can’t find the controller,” but it would have started all over and escalated.  So I just said, “Yes.”

Mistake.

“You mean there is something wrong with your brain?”

“If losing the controller means that there is something wrong with my brain, then yes, I suppose so.”

“Losing the controller” doesn’t mean there is something wrong with your brain.  Making a rule (You can play any game you want.) then changing the rule (You can only play a connect game.) then saying you didn’t change your mind about the rule….Ahhhh!!! and your continued focus on the controller…Ahhhh!!! when the point is the change in the rule…Ahhh!! Would make me wonder if there is something is wrong with your brain too.

Heavy and loud stimming ensued.  He was vocalizing “Eeeeeeeeeeee” so loudly I couldn’t think. ..

I  understand why this would drive someone to heavy and loud stimming.  It's called FRUSTRATION OVERLOAD.  It happens when a person's frustration tolerance has been exceeded.

(I won’t get into the issues about sending the child outside and assuming he is ok because she can hear him.)

One of my biggest frustrations when talking with many people is that they do not mean what they say or say what they mean.  Or when they change their opinion, stance, or rules, they don’t make that explicitly clear. They just change and expect me to keep up…know that they changed and why.  Well, I don’t always know. And it can be really confusing and frustrating.

People often tell me that it is a challenge to talk with me because they need to be careful about everything they say. Because I take them at their word. Because I question contradictions and illogical statements. When I do this I am not trying to be combative; I am listening carefully and really trying to understand. The words are my primary clues. Intonation, gestures, and facial expressions are not as useful to me as they may be to others.

Try this for a few hours. Think very carefully about everything you say. Not what you mean. Not what you mean to say. What you actually do say. The words, without expression, without gestures, without intonation. I’m not sure if people can assess this for themselves. I think people are often quite casual about their words, trusting that others will somehow understand.

So, maybe thinking very carefully about what you say won’t be of much help…unless you are speaking with a person with autism. Then, if the person questions you a lot, maybe they aren’t trying to be difficult. Maybe they are trying to understand. And if the person becomes frustrated or agitated, perhaps you can at least consider that maybe, because you are not saying what you mean or meaning what you say or you are changing the rules or being illogical, it seems to them that there is “something wrong with your brain”. 

A question about autistic children, children with sensory processing problems, and privacy.

This topic applies in similar ways to children who do not have sensory processing problems and who are not autistic, though distinctions may be made. As my experience and focus has been primarily related to blogs by parents writing about their children with sensory processing issues and autistic children under the age of 18, I’ll confine my pondering in this post to that group.

When I started reading blogs related to sensory processing and autism, I saw that many bloggers made their real name readily apparent in their blogs. Many blogs about sensory processing and autism are written by parents of children diagnosed with sensory processing issues, autism, or both.  Many of these bloggers use their real names and the real names of their children. Many of these bloggers also post identifying pictures of themselves and pictures of their children on their public blogs.  

I thought about the pros and cons of pseudonyms.  A post titled “Blogging:  Real Name or Pseudonym?” is concise and seems thoughtful, giving pros and cons of each approach.  The post “Should You Use a Pseudonym For Your Blog” also gives some reasons why a pseudonym might be a wise choice (one being if you blog about your children). The post “Should We Rethink Pseudonyms” suggests that real names may be best for reasons such as perceived authenticity, it’s “a pain” to have other personas, and it’s “distracting” to writing under more than one name. However the author of this post does not mention blogging about children and writes that there may be reasons when it is “crucial” to use a pseudonym.

I searched for specific articles about blogging about children using the real names of the parents and the children. Not much came up. There was one post titled “Is it wrong to blog about your child with special needs? I say no. Ahem.”  The author is a mother who says she uses her real name and her child’s real name and pictures of her son in her blog, which focuses on her son. She thinks this is fine. In fact, she thinks this is better than fine. She states her reasons, such as parents who read about her son’s accomplishments are inspired and given hope and mom’s who read the blog have connected through the blog and found friends they needed. I do not know why any of these reasons would have been thwarted had she used a pseudonym for herself and her son and not included identifying pictures of her son.

The safety considerations in favor of using a pseudonym when blogging are relatively well known. Of course, there is no guaranteed anonymity online. However, using a pseudonym carefully usually makes matching the blog with the person considerably more difficult for most people.

As an adult, the real name or pseudonym question is one you can make for yourself. As a parent, it would seem that the decision would become more complex. The reasons for not using a somewhat closely protected pseudonym would need to be weighed against the potential risk to not just the parent author, but also to the child. Still, the chance of physical harm to the child if a pseudonym is not used is, statistically, very low. 

pri·va·cy

/ˈprīvəsē/

Noun

1. The state or condition of being free from being observed or disturbed by other people.

2. The state of being free from public attention.

But there is other potential harm looming; potential harm with a much higher chance of occurrence; the emotional, mental, and other harm caused by the violation of the children’s privacy. The children written of in the blogs I refer to are too young to legally or practically consent to the disclosure of facts about their lives that would likely otherwise be private.  These facts include not only details about the children’s behavior, but also details of their medical conditions, their parents’ thoughts and feelings about the children, pictures of the children, and more. 

But their parents make these facts public. Not just to a select group or community, but available to anyone in the world with an internet connection in a way that cannot be taken back. 

I understand why a person would choose to blog using their real name or an unprotected or loosely protected pseudonym. The reasons that are evident to me are these:

1.         It is easier not to take the actions and precautions needed to protect the blogger’s identity through a pseudonym (to the extent such protection is possible). 

2.         It can make it easier to facilitate forming or becoming part of a community. 

3.         It can make it easier to promote a business and monetize the blog.

4.         It can more directly stroke the blogger’s ego.

5.         The blog began as something intended to be smaller, but grew into something with a wide audience and changing the names would lose the readership and popularity the blog had already gained.

When a child is involved, I think the best interests of the child should be seriously considered. The benefit of blogging using real names and pictures should be weighed against the potential emotional, mental, and other harm caused by the violation of the child’s privacy should be considered. Blogging is a relatively new phenomenon. We do not have a large group of children who have grown to adulthood having had their medical, emotional, and other personal facts and experiences publicly chronicled and easily accessible for anyone to read. We do not know what the repercussions will be. Given the potential harm, why would a parent use real names and pictures in a detailed public blog about their child who has sensory processing issues or autism (or any child)? If you understand why this is in a child’s best interests, please explain it to me. 

I'm a swinger. Maybe you are (or should be) one too!

I recently read a post titled "Aspie Heaven in a Hammock", written by Eileen Parker.  The post reminded me of the picture of me above. I am studying for a law school exam while swinging gently in a hammock. It was my usual study corner...it was my usual corner when not studying, too. Of course, I am wearing baggy cotton clothes and have bare feet. Typical.

Eileen Parker also has Sensory Processing Disorder. Her post explains that her occupational therapist recommends swinging. And indeed, swinging is often a component in sensory integration therapy. Eileen and I both point to this article for more details about the benefits of swinging as part of therapy. There are other articles that describe the benefits as well, like this one on Swing Therapy. I like this short article because it doesn't recommend fancy swings or processes. It simply describes how Swing Sets Help Kids Cope With Sensory Processing Disorder.

I like that Eileen's post is about adults with sensory issues using swinging - most information on this is about children. And what I really like about it and about swinging in a hammock is that it's just a hammock (although the one I am in is made of very soft cotton...the nylon ones are scratchy to me). Much of the information on swinging as therapy is from people and companies that recommend "special" devices that you are encouraged to buy to use for swing therapy.

Sometimes it doesn't have to be that hard.  Many people enjoy the feeling of swinging. Like many things "human",  it's a spectrum. Some of us will benefit more from swinging than others...a LOT more. But you don't have to be a kid. And you don't need special equipment. And you don't have to have sensory processing issues to just...get in a hammock and soothe your senses.

Overview: Stims, Sensory Diets, and Accommodations for Adults

This is the first of a series of posts I'll write on the topic of stims, sensory diets, and accommodations. I will write this primarily from the viewpoint of and for adults with sensory processing issues, though much will also apply to children and some information will be explicitly about children. I am not a doctor. My expertise, if I can be said to have any, with these topics comes from studying, reading about, discussing, receiving therapy for, and, most notably, living with these issues for over half a century (yikes). All of this information is based on my personal experience. The spectrum is very broad and individuals vary greatly in their sensory issues. I am writing in these posts from my personal perspective and experience. This is a complex issue and will vary with each person. As for the series of posts, these are the planned topics:

Stims, Sensory Diets, and Accommodations for Adults
Part I:  Overview
Part II:  Stims
Part III:  Sensory Diets

Part IV: Accommodations
Part V:  Putting It Together; A Day in the Life

Part I: Overview

Stims, sensory diets, and accommodations are common in most human beings. But as with many things in the human experience, the type, frequency, intensity, and social acceptability of stims, sensory diets, and accommodations are on a spectrum.

Why use stims, sensory diets, and accommodations?

With most people, stims, sensory diets, and accommodations are related to managing two categories of stimulation:

1. Emotions:  Often the emotions are what many call "negative" emotions such as anxiety, fear, and anger. However, often the emotions that are managed with these behaviors are excitement, happiness, or boredom. (For example, when people are chosen to participate during game shows, they often jump up and down, flap their hands, and scream.)

2. Sensory Regulation:  Stims, sensory diets, and accommodations are often ways to regulate sensory stimuli. The goal can be to avoid stimulation (because it is unpleasant, painful, or overwhelming) or to seek stimulation (because it is pleasant, soothing, or there is not enough to feel "ok").

Can't you just stop or modify what you do if it is causing problems in your life?

If only it were that simple. Do you know what it feels like to have an itch and not be able to scratch it? Or to need to yawn and not be able to? The desire to stim, engage in activities of a sensory diet, or accommodate doesn't feel exactly like that because, well, it isn't that. But it is the closest analogy I can think of. Imagine that you itched...all the time...and you were not allowed to scratch the itch. Or you were told to do something other than scratch; you were told to modify your response by...singing when you itch. Or imagine you have a sharp rock in your shoe and you had to walk around all the time with it in your shoe. When you try to take the rock out people told you that it was just a little rock and you were being too sensitive. Then they told you to "get over it". There are many other examples I could give. I hope these few give you the general idea. And, of course, some of these behaviors simply become habit, though habit is generally applicable to only a small percentage of these behaviors.

What are stims, sensory diets, and accommodations?

Stims

Most people familiar with Autism or Sensory Processing Disorder are familiar with the concept of "stims" or "stimming", which is short for self-stimulation (or self-stimulatory behavior - which seems to me to be what my grandfather would have called a highfalutin way of saying it) or stereotypic (which is really pushing toward highfalutin).

Stims are primarily corrective. Stims generally serve one or more of these purposes:

1. They prevent pain or discomfort from escalating.

2. They lessen pain or discomfort.
3. They distract and divert attention.
4. They soothe or give pleasure.

Sensory Diet

When I first read the term “sensory diet” in the context of sensory processing issues, I thought “Oh, you can eat certain things to help with sensory processing issues?” (Or "Oh is that the legislative body of Sensoryland?" Ok, I'm kidding with that one.) I quickly figured out that “sensory diet” was a new term attributed to occupational therapist Patricia Wilbarger. The sensory diet was primarily designed by Patricia to help with sensory defensiveness. Avanti Educational Programs has a site with information on Patricia's approach (often called the "Wilbarger protocol") and a decent review (that gets more dated by the day, of course) of literature related to the Wilbarger protocol. 

Many people now use the term "sensory diet" more broadly to mean sensory input that a person, especially one with sensory processing issues, intentionally uses or that the person's care givers use to help manage issues related to sensory processing. That is the sense (pun intended) in which I will use the term. My sensory diet helps me to balance my sensory experiences so that I can maintain a level of comfort. I was recently asked what sort of sensory diet I use. I never thought much about that before I was asked. Now I have.

The sensory diet is primarily preventative. The things in my sensory diet provide measured sensory stimulus to keep my system balanced. I think of them sort of like the way some people eat small meals at regular intervals to keep their blood sugar levels even. Not to high and not too low...just right to avoid problems in the system. Often activities in my sensory diet also feel good (like often a meal is pleasurable because it  tastes good). However, the primary importance is the balancing effect of the activity (meal).

Accommodations

Accommodations can be preventative, corrective, or both. I divide accommodations into two categories:

1. Self-accommodations: Things that I do (or do not do) to manage sensory issues.

2. Accommodations by others: Things that I ask others to do (or not to do) or to allow me to do (or not to do) to manage sensory issues. 

Accommodations are different than a sensory diet. My sensory diet consists of generally pleasant or neutral sensory input that I seek out to keep my system balanced. Accommodations are ways that I try to avoid overwhelming or otherwise negative sensory input. The purpose is not so much to keep balance as it is to avoid something that will cause an imbalance  A subtle, but important distinction. I think about accommodations a lot, mostly because I don't want to ask for unreasonable accommodations by others. 

My accommodations generally serve one or more of these three purposes:

1. They prevent pain or discomfort.

2. They lessen or eliminate pain or discomfort.

3. They help avert overstimulation

How do people choose what stims, sensory diets, and accommodations to use?

Certain behaviors I've done most of my life: I can not remember a time that I did not rub the top of my foot against the bed as I tried to sleep, the couch, the floor, or whatever it was near as a way to help me relax. This is a stim.

Some I have discovered: When in school, I used to write a lot. I developed a "writer's bump" on my middle finger. Pushing this lead to me discovering that pressing my nail beds and pushing my cuticles back relieved and prevented negative energy buildup. This is part of my sensory diet.

Some behaviors I have consciously chosen: When plastic thread became common to sew tags on clothes, even one small thread made me feel that I had an open safety pin on the tag. The constant sticking was painful and drove me to distraction. I now cut the tags out of most of my clothes (even those without plastic thread are a problem). This is an example of a self-accommodation.

Stims, sensory diets, and accommodations can be chosen or requested, but often they are developed subconsciously, especially in children. Adults generally have a greater ability to substitute and chose these activities. Children are often told to stop or modify their behaviors and how to modify them. Unfortunately, many times they are told to do this by people who have no idea why the children are engaging in these behaviors. Being told to stop or modify a stim, sensory diet activity, or self-accommodation in a way that does not satisfy the need or desire that led the child to engage in that behavior can lead to confusion, low self-esteem, meltdowns, and a host of other unfortunate results. 

Why do children seem to have more social and other issues regarding stims, sensory diets, and accommodations than adults do?

At this point in my life, I have had many years to discover and invent modifications, sensory diets, and accommodations to avoid, lessen, or hide these behaviors that are considered socially undesirable. I am also on medication that helps to lessen some of the things that increase the need to use these behaviors. I feel great compassion for children and their care givers dealing with these issues. The children (and adults, including me) often do not know how to explain how they are feeling, why they are stimming, what sensory diet they need, and what accommodations might help. Many of the words for these things are not yet in our vocabulary. When children try to stim, get a sensory diet, or accommodate, sometimes they do not have the motor skills to effectively accomplish this. It is a frustrating learning process. In addition, when a care giver tries to perform the activity for the child, the care giver often does not know and the child can not explain, the proper pressure, placement, balance, and so on, that the care giver should be using. VERY frustrating for everyone involved. But it can get better, easier, closer to comfortable. And usually, over time, it does.

Autism, Being the Parent of an Autistic Child, and Identity

I decided from the start that many of my posts would involve autism because most people with autism have significant sensory processing issues, so the topic of autism transfers over much of the time. In addition, Sensory Processing Disorder is a "disorder" as autism is a "disorder". The things that the autism community is experiencing now are models and cautionary tales...opportunities for lessons learned...for the more recently recognized and developing Sensory Processing Disorder community. You can substitute "Sensory Processing Disorder" for "autism" each place it appears in this post.


I'm learning a lot from Ariane Zurcher. Or more precisely, from her blog posts. Recently, she posted an entry  called "Trouble Awaits if I Forget".  In the last paragraph she writes:

And yet, all of this is tricky.  There’s a huge danger of being seduced by one’s own ego.  When either of my children become boosters for my self worth and ego I know problems will arise.  When being a parent of an autistic child gives me a platform that I otherwise would not have available to me, I need to acknowledge that. Regardless of whether I asked for it, intended or even wanted that platform, I have to respect its presence.  When being the parent of an autistic child becomes my identity, I know I’ve drifted away from where I need to be.  Writing about my Autistic child cannot be “who” I am.  That’s putting way too much pressure on any child, and it sets up an unhealthy and untenable relationship.  Trouble certainly awaits me if I forget that.

Ariane is good at this. She has the "It's not you it's me" style down. Writing about herself. Humble, modest, insightful. When the message could easily be taken to be something like: "It's not you, it's me...and you and everyone human. So take note: Trouble certainly waits me and you and everyone human who forgets this.".

I'm not nearly so skillfully subtle.   

"When being the parent of an autistic child becomes my identity, I know I’ve drifted away from where I need to be."  I feel the same way about being autistic.  If being autistic ever becomes my identity, I'll know I’ve drifted away from where I need to be.  

Of course, the concept of "identity" is one that has been the topic of books and doctoral theses and debates and on and on. To say it is complex is understating the case. What I am talking about here can be defined as "the distinguishing character or personality of an individual". And I think this is most likely what Ariane and others mean, in its simplest definition, when they write about how "being the parent of an autistic child becomes my identity" or that being an autistic person is their identity. And since so much of identity is perception, I think this definition is usually what others think of when people claim, consciously or unconsciously, such an identity.

My neurological wiring (which produces behaviors which have been determined by "experts" to be what they have decided to label "autism") is an important part of who I am.  It’s certainly something I live with every second of every minute.  But autism is not my identify.  Being an attorney is not my identity. Nor is being an EMT. Nor is any other thing that would be a "correct" answer to the (always confusing to me) question "What do you do?"  Being a mother, lover, friend? Nope, my primary identifiers are not determined by my relationships with particular people. My identity is determined by my core principles. 

What one chooses, consciously or unconsciously, as their identity (to the extent it can be chosen, which has also been the topic of books and theses and debates and on and on) is deeply personal, by definition. And whether a particular identity is near or far from where someone "needs to be" is again, deeply personal. But the implication, that some people do have (by choice or otherwise) being the parent of an autistic child as their identity or being an autistic person as their identity is certainly valid. The implication that "trouble awaits" when they have such an identity is likely valid as well.

Perhaps trouble always awaits. But a person's identity certainly has an influence on what kind of trouble. And a person's identity even more certainly has an influence on how that person will handle that trouble. It influences how that person responds to other people and situations. I suspect - and even more ardently I hope - that most who chose being the parent of a fill-in-the-blank child or being a fill-in-the-DSM-code person as their identity haven't given this deeply personal issue a lot of deeply personal thought with any true clarity. And I wish they could...and would.  

The Princess and the Pea: A story of a little girl with Sensory Processing Disorder

"The Princess and the Pea" is a story most famously credited to Hans Christian Andersen and was first published in Copenhagen, Denmark by C.A. Reitzel on 8 May 1835 in an unbound 61-page booklet called Tales, Told for Children. First Collection. First Booklet. 1835. (Eventyr, fortalte for Børn. Første Samling. Første Hefte. 1835.). Some say that the story was mocking the attempts of nobility to seem more sensitive than the common folk and some say it was intended to make fun of the way nobility sometimes went to great lengths to establish the validity of noble bloodlines. The tale was also criticized for depicting women as fragile. 

And perhaps it was. However, the story is said to be very similar to a tale told as early as the 11th Century, long before Hans made it famous. As this is a case where my imagining can do no harm and may cause some joy, I have decided to think that perhaps when the story began, many hundreds of years ago, it was first told by the caregiver of a child with Sensory Processing Disorder to help her feel that her sensitivity was not something to feel ashamed or badly about. In fact, her sensitivity was one of the things that made her uniquely her. And that her caregiver did indeed consider her a princess in the kindest and most loving sense that the word can be used.

For those of you who are not familiar with the tale, it goes like this...

The Princess and the Pea

by Hans Christian Andersen
Translated by H. P. Paull (1872).

ONCE upon a time there was a prince who wanted to marry a princess; but she would have to be a real princess. He travelled all over the world to find one, but nowhere could he get what he wanted. There were princesses enough, but it was difficult to find out whether they were real ones. There was always something about them that was not as it should be. So he came home again and was sad, for he would have liked very much to have a real princess.

One evening a terrible storm came on; there was thunder and lightning, and the rain poured down in torrents. Suddenly a knocking was heard at the city gate, and the old king went to open it.

It was a princess standing out there in front of the gate. But, good gracious! what a sight the rain and the wind had made her look. The water ran down from her hair and clothes; it ran down into the toes of her shoes and out again at the heels. And yet she said that she was a real princess.

"Well, we'll soon find that out," thought the old queen. But she said nothing, went into the bed-room, took all the bedding off the bedstead, and laid a pea on the bottom; then she took twenty mattresses and laid them on the pea, and then twenty eider-down beds on top of the mattresses.

On this the princess had to lie all night. In the morning she was asked how she had slept.

"Oh, very badly!" said she. "I have scarcely closed my eyes all night. Heaven only knows what was in the bed, but I was lying on something hard, so that I am black and blue all over my body. It's horrible!"

Now they knew that she was a real princess because she had felt the pea right through the twenty mattresses and the twenty eider-down beds.

Nobody but a real princess could be as sensitive as that.

So the prince took her for his wife, for now he knew that he had a real princess; and the pea was put in the museum, where it may still be seen, if no one has stolen it.

There, that is a true story.

THE END

Illustration by Edmund Dulac, 1911 / Public Domain

Why are people with autism so annoying?

Autistic Hoya  recently posted a blog article titled "Annoying". She begins with this:

Over the last several months, one of the most common search strings leading to various pages on this blog is "Why are autistic people so annoying?" (Other variations include "Why are autistics so annoying?" and "Why are people with autism so annoying?") I wrote this piece in response to these searches.

I'm annoying because I refuse to remain silent in the face of injustice.

And ends with this (with a lot of the same in between).:

And me, I won't sit down and smile or make polite conversation. I stand on desks and march on government buildings and testify at hearings and, dear god above, flap my hands in public even though I didn't as a child because I will be seen and I will be heard and I will be Autistic and disabled in public and I will not be fucking erased.

The things she says that people find annoying about her have not such much to do with her being autistic, necessarily. I wonder if the people who find her annoying would site the same things that she mentions. And I wonder if they would attribute her "annoying" behavior to autism. She seems to.

I've seen blogs, Facebook pages, and other writings of people in the autism community. Too often these writers seem to be angry and rude and loud and self-righteous. When I read their writing or hear them speak, I don't think "There's an angry, rude, loud, self-righteous autistic person. Autistic people are annoying." I think "There's an angry, rude, loud, self-righteous person. She (or he) is annoying." 

I am autistic. I can be annoying. From what I have seen, autistic people can be annoying. But the reasons I have heard (and thought myself often about myself) about this usually have more to do with autistic people not being fully or "appropriately" engaged with the people with whom they are interacting. Looking at the central features of Autistic Disorder, is it that difficult to believe or admit that some people will find people with those features annoying...at least some of the time?

Autistic Disorder (299.00 DSM-IV)

The central features of Autistic Disorder are the presence of markedly abnormal or impaired development in social interaction and communication, and a markedly restricted repertoire of activity and interest. The manifestations of this disorder vary greatly depending on the developmental level and chronological age of the individual. Autistic Disorder is sometimes referred to as Early Infantile Autism, Childhood Autism, or Kanner's Autism (page 66).

A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):

1. Qualitative impairment in social interaction, as manifested by at least two of the following:
   • Marked impairment in the use of multiple nonverbal behaviors such as eye to-eye gaze, facial expression, body postures, and gestures to regulate social interaction .
   • Failure to develop peer relationships appropriate to developmental level
   • A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
   • Lack of social or emotional reciprocity
2. Qualitative impairments in communication as manifested by at least one of the following:
   • Delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gestures or mime)
   • In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
   • Stereotyped and repetitive use of language or idiosyncratic language
   • Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
3. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
   • Encompassing preoccupation with one or more stereotyped patterns of interest that is abnormal either in intensity or focus
   • Apparently inflexible adherence to specific, nonfunctional routines or rituals
   • Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
   • Persistent preoccupation with parts of object

B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:

• Social interaction
• Language as used in social communication
• Symbolic or imaginative play

C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.

And ya know what? People can be annoying. Autistic people, neurotypical people, old people, young people, fat, thin, black, white, brown, olive, pretty, ugly, stupid, smart, diabetic, gay, straight, blind, insert-your-word-of-choice-here. But it's not always or even usually because the person has the features of that group. 

I'm not trying to bash Autistic Hoya. Like many people, she is passionate; she stands up for what she believes; she gets in people's faces about it. But like many, she is also angry, rude, loud, and self-righteous. And no doubt many people find that annoying.  But it's not because she is autistic and I think it is a disservice to autistic people to say or even imply that it is.