Four years ago, The Scientist and I adopted a dog. This is Emma, a few days after we brought her home:
Emma was a rescue. She spent nearly 3 months in the shelter system. The week we adopted her, she was featured in the shelter’s weekly newspaper ad that highlights the hard cases. We didn’t know that at the time.
When we visited the shelter, The Scientist and I agreed to walk around separately and then compare notes on the dogs that seemed like good possibilities. Emma was on The Scientist’s list; I hadn’t noticed her. Most of the dogs in the shelter come running to the door of their enclosure when a person walks by. Emma sat in the back corner, wary and watchful.
But that was okay. I understand what it means to fear change.
She fit my criteria (female, medium-sized, short-haired, not hyper or teething or a submissive piddler) so we took her out to the shelter’s backyard for a visit. As soon as we let her off the leash, she ran to the opposite side of the enclosure, as far away from us she could get.
We sat down on the gravel and waited. Eventually she came over to tentatively check us out. I didn’t realize at the time what a huge step this was for her. After talking it over, we decided to take her home.
We had no idea what we were getting into.
Shortly after arriving home, I took her out into our walled-in backyard. When I turned on the hose to water some newly planted trees, she jumped the three-foot wall and bolted.
All I kept thinking as I tried to lure her close enough to grab was, “If I call the shelter and report her missing on the same day we adopted her, they’ll never let me have another dog.”
I finally managed to coax her back into the yard. In the coming days, every time I turned on the hose she bolted over the wall. When I unloaded the dishwasher, she ran off to hide in another room. When the laser printer started up, she fled from my office like a bomb had gone off. When I picked up a ball to throw it, she cowered and hid under a bush.
But that was all okay. I understand what it means to have seemingly irrational triggers.
We took her to the vet for a check-up. One of the first things the vet said was, “You need to start socializing this dog immediately or she’ll bond exclusively with you and won’t be able to tolerate anyone else.”
At the time, I was having trouble imagining her bonding with anyone. She was content to spend her days alone in the yard. Some nights it took me a half hour or more to get close enough to leash her and bring her inside. Even when it was snowing, she preferred to dig a hole and curl up in it, oblivious to the snowflakes accumulating on her. Once I got her inside (she refused to let the Scientist get close enough to leash her), we had to lie flat on the floor and be very quiet to get her to approach us voluntarily.
But that was okay. I understand what it means to be slow to trust strangers.
She was an exceptionally good dog. She climbed on the couch once. I told her to get off. She never did it again. She never chewed up a shoe or a sock or anything else that wasn’t a dog toy. She rarely had an accident inside. What she did do–and still does when she’s anxious–is pace. Relentlessly. In circles. She also compulsively dug holes all over the yard.
But that was okay. I understand what it means to engage in repetitive comforting activities when you’re anxious.
I researched how to socialize a traumatized dog. I rewarded her for channeling her stress into her chew toys, for smelling objects that frightened her, for making eye contact. We enrolled in puppy kindergarten. For the first six weeks, we had to carry her into the classroom because there was no way in hell she was going through that door voluntarily.
It was too noisy, too unfamiliar and there were too many strangers. It took both of us to manage her during the hour-long class. We were all exhausted when it was time to go home.
But that was okay. I understand what it means to struggle with new situations, strangers, and loud noises.
I read and read. I was becoming an expert on dog socialization. One book after another emphasized the importance of routines in making a traumatized dog feel secure. A dog that knew what to expect was a happy dog.
This was not news to me.
Gradually we got to know Emma and she got to know us. We discovered that she has some scars–one of her ears never grew (it’s all scar tissue), her muzzle is scarred, and her right rear hip bone sits half out of the socket, poorly healed from some unknown injury. We don’t know her early history, but the evidence points to a rough start in life.
We also discovered that she loves to play and is very affectionate with people she’s grown used to. She warms up to friendly strangers more quickly these days. She’s still terrified of children, but has learned to politely share an elevator, as long as everyone stays on their own side.
She’s a loyal guard dog, an enthusiastic running partner and she instinctively knows when one of us needs comfort. The last time I had a meltdown, she came and laid her head on my cheek as I was curled up on the floor, crying. She reminds me to feed her if I forget and nudges at my elbow to get me to take a break when I’ve been at the computer too long.
She’s come to understand what I need in much the same way I learned to understand her in those early weeks and months.
They say dogs resemble their people–or is it the other way around?–and as you’ve probably guessed, Emma and I are kindred souls. I wonder if The Scientist picked her out because she reminded him of me.
I started this post thinking it would be about dyspraxia and Asperger’s. Dyspraxia, difficulty with fine and gross motor coordination, is often diagnosed alongside ASD. Adult symptoms of dyspraxia overlap with adult ASD traits to the point that even the experts have trouble separating the two. In fact, autistic individuals are sometimes misdiagnosed as dyspraxic.
If the experts are confused, I’m certainly not going to untangle the topic in a single blog post, so I decided to set that idea aside and write about general movement difficulties. Aspies are a notoriously clumsy lot. I’m forever tripping over stuff, bumping into stuff, dropping stuff, breaking stuff.
Seriously, if you like your stuff, keep me away from it.
I’ve broken an entire kitchen’s worth of glassware in my lifetime. In the first month of owning a new blender, I broke the glass pitcher not once, but twice. You’d think I would have learned the first time not to put it down so forcefully on the counter. After the second one shattered, I downgraded to a plastic pitcher because a blender is not worth that kind of trauma.
Gross and Fine Motor Impairment is Nearly Universal in ASD
The theories about why aspies are so uncoordinated are many: motor planning deficit, motor development delay, motor timing impairment, problems with initiation or inhibition, imitation and praxis impairments, deficient postural control, under reliance on feedforward control. There are also a handful of other conditions that muddy the waters further: apraxia, ataxia, hypotonia, dysgraphia, dyscalculia, dyskinesia . . .
You see where this is going, right? It would be easy to write a book on the subject and still not cover everything. Just defining all of those things would require a whole series of blog posts.
There are a few things that most of the experts agree on:
Some level of gross and fine motor impairment is nearly universal in people on the spectrum.
Motor impairments may improve somewhat with age, but generally persist into adulthood.
With more study, motor development delays could be a reliable indicator of the presence of ASD in very young children.
It is unclear whether dyspraxia is a separate diagnosis or the features of dyspraxia overlap with features of ASD.
The cause of motor development delay in autism is unknown.
It’s interesting that once again we have something (like insomnia) that occurs in the majority of autistic people but is not part of the diagnostic criteria. Autistic children routinely receive occupational therapy to improve their fine motor coordination, balance and posture; motor impairment is nearly universal. So why isn’t fine/gross motor skill impairment officially one of the diagnostic criteria?
What if Motor Impairments are Connected to More Than Clumsiness?
Some of the research I read about motor skill impairment in ASD is more radical than what you’ll find in the popular literature. Consider these two possibilities:
1. Delayed or nonexistent speech may be the result of a movement disorder. Rather than assuming that nonspeaking autistic individuals don’t have the cognitive development necessary for communication, some researchers believe that there is a physical impediment to performing the necessary movements with the mouth to produce speech.
This isn’t a blanket explanation for all situations in which autistic people are nonspeaking, but it does offer an alternative way of thinking about the relationship between speech and communication. Once we separate the two, thinking of speech in the physical rather than purely cognitive realm, we’re less likely to assume that because a person doesn’t communicate via speech they are incapable of communication.
It also presents another way of looking at the phenomenon of “selective mutism” (temporary loss of speech). Often a temporary loss of speech in autistic individuals is related to a period of high stress. When I’m very stressed, my speech suffers and I can become temporarily mute or significantly impaired.
I also know that during periods of intense stress, I’m more likely to trip and fall while running or to drop things. There is a definite deterioration in my motor coordination under stress. It’s not hard to imagine this extending to the motor aspects of speech.
2. Social communication issues may arise from early difficulties with motor skills. Before children speak, they rely on nonverbal communication for play. If autistic youngsters aren’t modeling the expected nonverbal cues due to motor impairments, they will also fail to receive appropriate nonverbal responses from their peers.
This failure to communicate physically may mean that autistic children have fewer and poorer quality nonverbal interactions with peers and therefore struggle to learn social communication at the most basic levels. As they grow older and nonverbal communication grows more complex, they fall further and further behind.
Facial expressions, hand gestures, posture and body positioning–all physical movements–are the primary tools of nonverbal interaction. If autistic individuals have difficulties with initiating, performing, mirroring, inhibiting or planning physical movement, it stands to reason that this would include difficulties with the physical movements inherent in nonverbal communication.
Social Communication Difficulties in a New Light
It’s interesting to think about social communication and speech difficulties as rooted in impaired motor skills. What if we struggle with speech and nonverbal social communication for the same reason that we struggle with catching a ball or learning to ride a bike?
Is it possible that a group of seemingly disconnected autistic traits have a common root in our motor skills impairment?
As I mentioned previously, there are different ways of getting diagnosed. Depending on what route you choose, your evaluation may involve questionnaires, cognitive tests and/or a diagnostic interview.
My evaluation was done by a neuropsychologist, so I’m going to talk about that here. I hope other autistic individuals who’ve been professionally diagnosed will continue to share their stories in the comments to create a more diverse picture of what diagnosis can look like.
Neuropsychology is a field that looks at behavior in terms of brain function. Autism is a developmental disorder, not a mental illness, so diagnosing ASD is one of the areas that neuropsychologists specialize in. Clinical psychologists and psychiatrists who work with autistic patients will also use many of the same tests and procedures described here.
When I made my initial appointment, I was told that testing would take 4-8 hours and might be split over two or more appointments, depending on how fatiguing I found the tests.
A few days later I received a 17-page questionnaire in the mail. The instructions said to complete it and bring to my evaluation. The questionnaire covered personal and family mental health history, cognitive symptoms (memory, daily function, auditory/visual/balance, etc.), childhood development and an open-ended question about why I was seeking an evaluation.
I used the open-ended question to make my case. I started out with “I suspect I have Asperger’s Syndrome” and then listed my major symptoms as I understood them at the time: social awkwardness, rigidity, attachment to routine, intense interests, difficulty reading facial expressions and body language, clumsiness, etc. I tried to focus on the symptoms that fit the DSM categories first and then listed other less universally recognized symptoms after that.
Beneath the open-ended question was a set of check boxes that said:
Overall I think that there is:
nothing wrong with me
probably something wrong with me
definitely something wrong with me
In true aspie fashion I checked the “definitely” box, crossed out “wrong,” wrote in “different,” then annotated it with a few descriptive sentences. In fact, I annotated a lot of the “ticky box” questions. By the time I was done, my questionnaire was a scribbled-on mess.
Whether you receive a history questionnaire or not, I strongly recommend making notes to bring to your appointment. The time you’ll spend with the doctor conducting your evaluation will be limited; it’s important to bring up everything you think will be helpful in getting an accurate diagnosis.
If you find speaking about your symptoms difficult, prepare a concise (no more than 1 page) written summary to give to the doctor at the start of your appointment. Autism causes communication difficulties. There’s nothing wrong with telling the doctor that you prefer to use a brief written description of your concerns as a starting point.
Most importantly, as you prepare for the appointment, try to relax. I know it feels like there’s a lot riding on the outcome, but all you have to do at the appointment is be yourself. This is one time when being your own hot mess of an autistic self is encouraged.
Preparing for your Evaluation
If the doctor’s office sends you a history and/or symptom questionnaire, take it seriously. Fill it out as completely as possible, providing specific examples where you can. Don’t hesitate to add additional information that you feel is relevant.
Make notes regarding what you want to talk about as part of your diagnostic interview.
If necessary, prepare a written summary of your symptoms/signs/traits for the doctor.
If you have questions, write them down and bring them to the appointment so you don’t forget.
Let’s get the hard part out there first: I lack empathy.
By lack, I don’t mean a complete absence of empathy; I have an empathy deficiency. If most adults are “doing empathy” at the calculus level, I’m still in Algebra II and solving for X in ways that would make your head spin.
Before I discovered the online autism community, I assumed that my impaired empathy was typical for someone with Asperger’s. Much of the published literature includes impaired empathy as a common AS trait. “Lack of social or emotional reciprocity” is one of the diagnostic criteria. My own experience didn’t disprove that.
Then I discovered the online ASD community and suddenly felt like I needed to hide my struggles with empathy. Everywhere I looked people were refuting the notion that autistics lack empathy.
Again and again I’ve encountered discussions about empathy online and quietly slunk away, feeling like there was something wrong with me–like I was a “defective” autistic.
I Googled empathy–probably one too many times. I read the long list of definitions at Wikipedia . I read Simon Baron-Cohen’s writing on the subject and felt the same anger others have expressed at his biases. I read looooong threads on Wrong Planet and Facebook. I revisited the diagnostic criteria. I combed through the #actuallyautistic tag on Tumblr.
The more I read, the more confused I became. I started to wonder if I was talking about the same thing others were talking about when I use the word empathy.
So let’s talk about that. What is empathy, exactly? What are we talking about when we talk about empathy?
Sympathy vs. Empathy
Empathy, in the most basic sense, is the ability to understand and share an emotional state with another person.
As an adult with a good amount of life experience, I can often understand the emotional state of another person. I know that if someone’s dog has died, they’ll feel sad. Most people probably come to this conclusion in a more instinctive way than I do, but I get there all the same.
Depending on the situation, I may share an emotional state with another person to some degree. I know how I felt when my dog died. Logically I know that the other person feels very sad. If I knew the person’s dog, I’ll feel a sense of loss myself, and that will contribute to my sharing their emotional state. However, I rarely experience a strong emotional reaction to another person’s circumstances.
That’s not to say that I don’t experience concern toward other people. Simple concern for others, though, isn’t so much empathy as sympathy. Sympathy is a concern for the wellbeing of another person. It can exist in the absence of the empathic act of sharing an emotional state with that person. It often arises from empathy, but it doesn’t have to.
When my daughter says she’s had a bad day at work, even though I find it hard to share her emotional state, I sympathize with her frustration or sadness. I don’t know what it feels like to get a phone call from a suddenly homeless student. I can’t truly share what my daughter is feeling as she tells me about the experience. But I do worry about her ability to cope with the situation. I understand how important her work with is to her. I hear the distress in her voice and want to do what I can to offer comfort.
In this type of situation, I have a great deal of sympathy, regardless of how strongly rooted in empathy my concern is. My sympathy doesn’t always come across like a neurotypical person’s sympathy would–okay, it rarely does–but it exists just the same.
The Challenges of Perspective Taking
The examples I used above are fairly explicit in terms of the emotional content of the situation. Both a dead dog or a student who’s been kicked out of her home have obvious contextual clues to the emotions that are present. Even my rudimentary empathic radar is going to pick them up.
Where I struggle most is in subtle situations. I often say things that other people consider insensitive and then I completely miss their wounded reaction to my comment. Why? Because I didn’t know that my comment was insensitive in the first place and I have trouble reading nonverbal communication.
Think about it. If you didn’t know someone’s dog had died, would you find it easy to understand and share their emotional state? Probably not. You’d pick up that something was wrong, but you wouldn’t be able to truly comprehend how they felt until they explained the source of their distress.
For me, all the little things that people communicate nonverbally or hint at or imply are like a whole bunch of secretly dead dogs. Until some says, “your comment hurt my feelings because ________” all I have is a vague feeling that something is off. Maybe not even that.
This is why I “failed” the Sally-Anne test. Twice. I failed it when I first discovered it early in my reading about Asperger’s and then I failed it again a few weeks ago, because it was presented in a slightly different format. Yep, twice.
You can argue that the Sally-Anne test has little to do with empathy. It’s true, the Sally-Anne test doesn’t predict the emotional dimension of empathy. Taking the test doesn’t require you to share an emotional state with Sally. It does, however, require you to set aside your own knowledge of the situation and take Sally’s perspective.
This is where a more precise definition of empathy comes in handy. Empathy actually has two components: cognitive (perspective taking) and affective (emotional response to another’s emotional state). The Sally-Anne test is a test of cognitive empathy, which is impaired in people with Asperger’s. However, when it comes to affective empathy, according to a 2007 study* aspies are on par with neurotypicals.
So. Affective empathy? We have it. Cognitive empathy? Not so much.
This is why I can fail a simple test twice, even when I already know the “answer.” I automatically default to my own perspective. I can take another person’s perspective, but it often requires a conscious decision on my part to do so. This seems to be something that’s silently implied in the general, vague, oft-used notion of empathy: that one can spontaneously and instinctively understand and share an emotional state with another.
When I say I have an empathy deficiency, I mean that I struggle with taking the view of another person spontaneously and instinctively. I lack cognitive empathy.
Too Much Empathy?
Over and over again I see references to autistic people having too much empathy. While I think the people using this phrase mean well, I’m not sure it’s accurate. Is an autistic person who feels overwhelmed by an emotional situation truly sharing and understanding the emotional state of another person too much or are they overwhelmed by an inability to regulate their own reaction to a highly-charged situation?
Generally, when I feel emotionally overwhelmed by another person’s emotions, it’s related to my alexithymia (emotional dysfunction). In short, I have trouble regulating my own emotions and I have trouble discriminating between emotions that are “aimed at” me and emotions that are “aimed at” someone else. If I encounter two people having a shouting argument, my emotional reaction is the same as if I were the target of their shouting, as if they were both angry at me.
I don’t think this is empathy. I’m not sharing their emotional state (anger) so much as feeling like the target of it. If I were sharing the emotional state of the people in the shouting match, wouldn’t I feel like shouting at someone, too? Instead, I feel frightened and intimidated. I feel an intense need to escape from a situation to which I’m nothing more than a bystander.
In fact, in this kind of situation, the only person I’m thinking about is myself and how uncomfortable I am. There I go again, taking my own perspective. My distress at the situation might outwardly appear to be empathic but my internal reaction is a great big “MAKE IT STOP, NOW.”
This type of reaction is mentioned in the 2007 study I referenced earlier. The researchers found that the aspies scored significantly higher on a scale of personal distress than the neurotypical group, indicating “a greater tendency to have self-oriented feelings of anxiety and discomfort in response to tense interpersonal settings.” Note the use of self-oriented feelings in that sentence. Empathy by definition describes a state shared with others; an overabundance of self-directed anxiety or discomfort is not the same as “too much empathy.”
The Right Way to be Autistic
Circling back to what got me started on this post: the subtle implication in the discussion about empathy that there is a right way to be autistic and that right way includes having empathy or too much empathy. And perhaps as a corollary to that: autistics who have too much empathy are doing their part to subvert the stereotype of the unfeeling autistic.
That was probably an unpopular paragraph. If you found it offensive or upsetting, take a moment to stop and think about why.
Is there any difference between the subtle pressure to (appear to) have empathy and the subtle (or not so subtle) pressure to not stim in public or to make eye contact? Is advancing the belief that all autistics have empathy another way of making us seem more normal? Is there a difference between pressure to not look different outwardly and the same sort of pressure to not feel different inwardly?
Empathy is often philosophically framed as a fundamental element of the human condition. Without it, are we somehow less than human? What if we have impaired empathy–is our humanity impaired?
Choose Your Words
Perhaps we need to be more thoughtful about how we use the word empathy.
Empathy is not interchangeable with sympathy.
Empathy is not interchangeable with emotion.
Empathy is not interchangeable with emotional overload.
Empathy is not some hoop to be jumped through to prove to the world that we may be autistic, but it’s not that bad because “oh look, we have empathy just like you!” (Even if we do, in whatever form. There should be no burden of proof.)
Empathy has many definitions, but they all have at their core understanding the emotional state of another person.
When I say I lack empathy, what I mean is I have a deficit in understanding the emotional states of others. Hell, I have a deficit in understanding my own emotional state at times.
“I lack empathy” simply means that “I have a deficit in understanding the emotional states of others.”
This doesn’t mean I’m unsympathetic.
It doesn’t mean I don’t care for others.
It doesn’t mean I can’t show concern.
It doesn’t mean I have no emotions.
It doesn’t mean I don’t get overwhelmed by other people’s emotional states.
It doesn’t mean I’m any less human than you are.
What does it mean then?
That I may need more information than a typical person to understand a social situation. That my reactions to your emotions may be unconventional. That I have to work harder to grasp what comes naturally to most people.
Simple as that. Nothing more, nothing less.
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*Thank you to Pi for pointing me toward this study. It turned out to be the missing link in wrapping this post up.
This week for Take-a-Test Tuesday, I took the Broad Autism Phenotype Questionnaire.The only online version I was able to locate is seriously flawed so I’m going to recommend against taking it. However, I’ve been looking for an excuse to talk about the Broad Autism Phenotype and here it is! If you’re the parent of an autistic child, I have a question for you about the BAP at the end.
The Broad Autism Phenotype (BAP) is a fancy way of saying that nonautistic relatives of autistic individuals often have subclinical autistic traits themselves. As far back as Leo Kanner’s original study on autism, researchers have been observing a tendency for parents of autistic children to exhibit traits that are milder but qualitatively similar to the defining characteristics of autism, especially in the area of social communication.
Consequently, the Broad Autism Phenotype Questionnaire (BAPQ) focuses primarily on social communication, rigid personality traits and pragmatic language deficits, which are thought to be the most common characteristics of BAP. It is designed to be taken by nonautistic individuals, specifically parents of autistic children.
The BAPQ has questions in three areas:
social communication deficits (aloof personality subscale)
social language deficits (pragmatic language subscale)
Each of these areas corresponds to one of the core domains of autism (though that will change with the DSM-V): social, stereotyped-repetitive, and communication deficits. The researchers who developed the BAPQ defined the three subscales that the test measures as follows:
Aloof personality: a lack of interest in or enjoyment of social interaction Rigid personality: little interest in change or difficulty adjusting to change Pragmatic language problems: deficits in the social aspects of language, resulting in
difficulties communicating effectively or in holding a fluid, reciprocal conversation
In developing the BAPQ, traits like anxious/worrying,hypersensitive to criticism, and untactful (which can all be autistic traits) were omitted because the researchers believed they were observed less frequently as part of the BAP. An individual is considered to “have” BAP if they exceed the threshold score on two of the three subscales.
It’s interesting to note that parents, grandparents, aunts and uncles of autistic children also have higher than average rates of major depression and social phobia. A number of studies (like this one) have indicated no direct relationship between BAP and major depression or social phobia in autism families. There have also been a number of studies that have refuted the notion that raising an autistic child is the cause of these elevated rates (take a look at the discussion section of the linked to study if you’re curious about how they reached this conclusion and what other factors might be at work).
Taking the Test
The only place I could find to take this online is at OKCupid. The test is riddled with grammatical errors and the result summaries are downright insulting. The scoring also appears flawed, so unless you have literally nothing better to do, I don’t recommend taking it. Seriously, go see what’s new on Tumblr or something.
My primary purpose in analyzing the online test is to point out how flawed it is and how it doesn’t align with the intended scoring method of the original BAPQ. You might want to go through the test to see what questions are included but you can also find the questions on page 10-11 of this PDF.
Scoring the Test
It’s unclear how the online test is scored. The original BAPQ has 6 answer choices, scored on a scale from 1-6, but the online test collapses the first and last two choices. The BAPQ cutoff scores are averages (2.75 – 3.5), which were developed as part of a study using the 1 to 6 scale. The OK Cupid test appears to be using a summed score rather than an averaged score to determine a cutoff, so maybe the person who posted this decided to make up their own cutoff?
Like I said, you’d be better off wasting fifteen minutes on Tumblr.
At any rate, it provides four scores: diagnosis (overall score), aloof (aloof personality traits), rigid (rigid personality traits) and pragmatic (pragmatic language problems). The fact that the scores are presented as percentages (in excess of 100, no less!) makes no sense. Even worse is the little “diagnostic” description provided.
Mine says: “You scored 123 aloof, 117 rigid and 100 pragmatic. You scored above the cutoff on all three scales. Clearly, you are either autistic or on the broader autistic phenotype. You probably are not very social, and when you do interact with others, you come off as strange or rude without meaning to. You probably also like things to be familiar and predictable and don’t like changes, especially unexpected ones.”
Yep, that’s me, 123% aloof and 117% rigid.
I looked at all of the possible outcome descriptions (you can force the test to reveal them at the end even if they don’t pertain to your score) and they’re all just as meaningless. Some are downright wrong. Many of them state that you’re on the BAP if you are over the cutoff on one subscale but not the other two, which is incorrect.
Basically, the “results” of the online test are useless.
If you’re interested in taking the BAP and getting a valid score, you can look at the appendix of the original research paper which has the full set of questions with a scoring key.
The Bottom Line
The online version of the test is too flawed to provide meaningful results. The BAPQ as administered in a clinical setting is used to screen for BAP in parents of autistic children, but the goal of screening is unclear.
My question for any parents of autistic children who might want to answer: do you see aspects of yourself in the BAP questions? Do you think the BAP has any significance for you personally?
Take-a-Test Tuesday has led to some readers realizing that they too might be on the autism spectrum. Their comments nudged me to start writing about a subject I’ve been meaning to tackle: my Asperger’s “origin story” or how I came to realize that I might be autistic and what happened in the wake of that realization.
As usual, I’m mixing personal narrative with a bit of advice based on what I learned from my experience. I hope that other Autistics and those who think they might be on the spectrum will add to what I have to say here by sharing their own experiences in the comments.
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So, you think you might be an aspie or autistic or somewhere on the autism spectrum. Now what?
First, take a deep breath. Relax. Nothing’s changed. You’re the same person you were before you took that test, read that article or had a lightbulb go off while talking to someone about autism.
I remember my first inklings that I might be an aspie. I was listening to an NPR story about David Finch, the author of The Journal of Best Practices. His first hint that he had Asperger’s was an online quiz that his wife asked him to take because she recognized so many aspie traits in him.
As they described the quiz questions, for the first time I realized that Asperger’s Syndrome is more than social awkwardness and that I’m more than painfully shy. The symptoms that stood out most for me were the ones I’d never known were “symptoms” of anything other than my personality: attachment to routine, resistance to change, special interests, a need to be alone. Down the list I went, nodding and thinking yes, yes, yes, ohmygoshyes.
I went in search of the Aspie Quiz and what really blew me away were the specific behavioral questions: Have you been accused of staring? Yes! Do you tend to talk too loudly or too softly? Yes! Do you have difficulty filtering out background noise? Yes!
How had I not seen this before?
I’d heard a similar interview with Finch back in 2009. Interesting, I’d thought at the time, but nothing more. I’d read quite a bit about autism, because I was drawn to the subject. It never occurred to me to ask why. I’d taken the Autism Spectrum Quotient AQ test several times in the past. Every single time I scored above the cutoff for being on the spectrum. Every single time I told myself that it was probably a fluke, or even more improbably, that most people likely scored that high.
For years I’d tiptoed around the subject of autism. Finally, at 42, I was ready to explore the possibility that I was autistic. Processing your First Contact with Asperger’s or Autism
Nothing has changed; everything has changed.
Know that no matter how it feels right now, this can be a positive realization.
If you’re on the spectrum, learning more about what that means can help you understand yourself better and learn to cope more effectively with the challenges that an Autism Spectrum Disorder (ASD) presents.
As an adult aspie, I often feel that I need to self-censor in social situations. Don’t say the wrong thing. Don’t stare at people. (But don’t forget to make eye contact!) Don’t laugh at the wrong time. Don’t speak too loudly or too softly or too often or too infrequently. And above all, don’t stim.
Stimming makes people nervous. As a kid, I stimmed like mad. I’ve been rewatching old home movies and there I am stimming my way through Santa’s Land and Disney World and every birthday party ever. I’m bouncing, rocking, twitching, flapping, hopping. I’m hammering with anything that remotely resembles a hammer and rubbing my fingers over every nearby surface. I’m constantly in motion.
Four decades later, my stimming is more discreet. You’d have to be watching closely to notice that I’m rubbing my thumbs over the spacebar on my keyboard when I stop typing. Or that I’m fidgeting with a bottle cap under the table at a restaurant or playing with my hair while driving or folding and unfolding a piece of paper while I wait in the bank.
Stimming is so much a part of who I am that I when first read about autistic traits, I completely denied that I have stims.
That little kid in the home movies grew into a teenager who learned to stim more subtly to avoid drawing attention to herself. I’ve found socially acceptable stims like doodling or manipulating objects (pen, stress ball, cell phone) with my hands. I’ve tucked away my more obvious stims for use in private.
Well, mostly. The day of my Asperger’s assessment, I started out stimming discreetly during the interview with the psychologist. By the time I hit the three-hour mark in testing, I found myself rocking back and forth as I tried to work out the spatial reasoning puzzles.
Happy stimming feels a lot like this
There is too much comfort in stimming–it’s too much of a biological imperative–for me to completely extinguish it.
I recently read that medicating a child to reduce stimming is a good way to help the child concentrate on school work. Yes, if the behaviors are self-harming or severely disruptive medication might be the answer (though if it were my child, redirecting toward a less harmful stim would be my first strategy).
But for kids who are rockers or fidgeters? I have a feeling that the medication does more to make the people around them feel better.
If anything, stimming improves my concentration. It’s a release, like sneezing or scratching an itch. Have you ever tried to ignore an itch? What if someone told you it was wrong to scratch yourself to relieve an itch? What would that do for your concentration?
Stereotyped Movement (Stereotypies)
Stimming is the most common term used to describe the repetitive movements characteristic of autism, but a more formal term (and the one used in the DSM diagnostic criteria) is stereotyped movement or stereotypies. In this case, “stereotyped” has a different meaning than the one we’re used to. In a behavioral science capacity, stereotyped movement refers to repetitive, nonfunctional movement.
Like so much of what the experts term nonfunctional about autistic behavior, I’d ask nonfunctional for whom?
The researchers concluded that stereotypic behaviors in captive animals aren’t truly abnormal; they’re a reaction to abnormal environmental conditions. In other words, monkeys should spend their days swinging from trees and running about in the jungle, not sitting in small cages. When the monkeys can’t indulge their natural behavioral tendencies, they resort to stereotypical movements like “pacing back and forth, running in circles, somersaulting, rocking, self-biting, earpulling, hair-pulling, eye-poking, etc.”
Sound familiar?
The article goes on to say:
“Many stereotypies are signs of frustration, with the subject being chronically thwarted from expressing basic activities (Reinhardt).”
Yes, stereotypies are related to frustration at being chronically thwarted from expressing basic activities.
Think about all of the things that feel like basic needs to an aspie. Being immersed in a special interest for long periods of time. Being alone. Sticking to routines. Avoiding excessive noise, strong smells, or crowds. How often do we feel thwarted when trying to pursue the things we find comforting? Chronically seems like a pretty good description to me.
When you look at it from the perspective of the animal researchers, aspies are engaging in stimming (stereotypies) not because we’re abnormal but because we’re constantly at odds with our environment.
While it’s impossible for the majority of us to indulge our aspie tendencies 24/7, it’s important to recognize the cost of self-censoring. When I’m happy, the urge to bounce up and down is nearly irrepressible. I’ve learned that it’s okay to bounce when I’m with my family. In fact, my husband’s reaction to my unbridled, childlike joy is often a huge smile. It makes him happy to see me happy, even if my way of showing it is more appropriate to a four-year-old than a forty-three-year-old.
Self-censoring is exhausting. Letting my aspie side rule feels liberating. Why would I want to extinguish that?
The blog will be on hiatus through the holidays. Thank you for reading, commenting and sharing these past few months. I hope you all have a safe, happy and peaceful holiday and I’ll see you in 2013!
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I was going to start this out by saying that being an aspie has certain challenges. I was going to acknowledge how those challenges can be quite severe and then talk about the positive traits of Asperger’s in a measured, careful way.
But you know what? Screw that. Today I’m going to celebrate being an aspie.
I’m going to celebrate myself.
My Aspie Strengths (or How Asperger’s Has Made Me Awesome)
Many of my Asperger’s traits are double-edge swords, gifting me simultaneously with challenges and strengths. Impaired perspective taking? It makes it harder for me to work out people’s intentions but it also makes me nonjudgmental. Trouble with generalizing? That means I have to learn a similar lesson many times over, but gifts me with a dogged optimism and unconventional problem solving skills.
Curiously, some of my aspie strengths are a direct result of my funky wiring but many are coping mechanisms that I’ve developed to survive in a neurotypical world. Asperger’s has made me a survivor–forced me to adapt, by choice and necessity. The result is a unique set of strengths. Here they are, in no particular order:
I’m nonjudgmental. I take people at face value and will give someone the benefit of the doubt until they prove me wrong. A lifetime of being judged on appearance and first impressions will do that to you, I suppose.
I have a strong attachment to the truth. Telling it. Seeking it. Hearing it. If you ask me a question, you’ll get an honest answer. Perhaps more honest than you’d like. If you lie to me, I won’t forget it. I value honesty above many other traits–probably because I’m so bad at detecting dishonesty.
I’m curious. Insatiably so. I love learning, discovering, knowing. If you’re passionate about something and you want to share it with me, I’ll listen with genuine enthusiasm. My interests are wide-ranging and ever-evolving. My need for knowledge feels limitless, exciting and empowering. Give me an answer and I’ll have a handful of questions in reply.
I’m loyal. My attachments to people are few, but when I do form a bond with someone it’s a strong one. I will stand up for the people I care about in the face of a great deal of opposition. When Temple Grandin said that an autistic child will run into a burning building to save a person they love, she wasn’t kidding. That’s me in a nutshell.
I’m sincere. Perhaps naively so. I don’t have the patience or energy to be manipulative. I’m generally good-intentioned. When I do something for another person, I do it wholeheartedly. People often seem puzzled by my sincerity, disbelieving, as if being sincere is in itself some elaborate form of manipulation.
I have well-defined values. The black and white thinking of Asperger’s means that I’ve developed an elaborate and clearly delimited value system. This can be a blessing and a curse. There is a thin line between being principled and being stubbornly dogmatic. At most times, though, my values are my compass and my rudder, helping me navigate the ambiguities of a neurotypical world.
I’m an unconventional problem solver. I’m not afraid to ask wild questions or examine solutions that appear to have little hope of working. My instincts can get way ahead of my ability to verbalize them. Often, I’m told that things won’t work or don’t make sense–right up until I go ahead and do what I have in mind and it works. Or doesn’t. It’s a crapshoot, but that does little to dent my confidence and willingness to try.
I’m an optimist. I live in the here and now. I have few regrets. I view situations starting from zero. Aspies aren’t very good at generalizing from one occurrence to another similar occurrence, which I think leads to an irrational level of optimism. Sure something went wrong in the past, but (my brain always seems to say) this time will be different. Sometimes it is. Either way, I’ve found that taking the optimistic view of life makes me happy.
These are my strengths and superpowers. What are yours?
My Aspie Superpowers (or How Asperger’s Has Made Me Who I Am)
One of the myths of Asperger’s is that all aspies are savants–that we’re born with some profound skill, like the ability to name the day of the week for any date in history, draw the New York subway system from memory, or do complex mathematical calculations in our heads.
Some aspies are savants, but sadly, I have no savant skills. I’ve always been fascinated by people who do. I think it would be amazing to have a photographic memory or to instinctively understand a system like mathematics.
Like a lot of aspies, I do have a few overly developed traits. They aren’t at the level of a savant skill, but I’ve started to think of them as my aspie superpowers. They’re the things about me that people comment on as being out of the ordinary or above average. They’re a significant part of my self-identity:
I’m perceptive and detail oriented. I notice everything: changes and irregularities, patterns and habits. I can analyze the hell out of things. I see patterns where most people don’t. My affinity for details began as a coping mechanism, I think–a way to identify patterns in social situations that I couldn’t work out instinctively. Now it’s become my default mode for making sense of the world around me.
I have a high IQ. This may not seem related to Asperger’s until you think about what an IQ test is: logic, problem solving, pattern recognition. Especially pattern recognition. The question about what number comes next in the sequence? Pattern recognition. Which shape is missing in the grid? Pattern recognition. Is the sum of the odd numbers between 1 and 12 an even number? Yep, that one is pattern recognition, too. Or it is if your brain works like mine.
I’m calm in a crisis. If something goes wrong, I have an almost superhuman ability to separate myself from the situation and think clearly. Poor executive function combined with impaired perspective taking lets me focus on the facts at hand when others get overwhelmed by panic or “worst case scenario” thinking.
I’m dependable and disciplined. Both of these have roots in my Aspergarian need for routine. Once I get a routine in place, I can do the same thing day after day without tiring of it. I can keep the books, walk the dog, sort the mail–day after day, like clockwork–as long as it’s part of my daily schedule. I’m the kind of person people rely on. I get things done.
I’m determined. Perseveration has a huge upside. If a problem or task catches my attention, I’ll go at it like a doberman with a ragdoll. I’ll work at something long past the time when a more rational person would throw in the towel. A big part of success for me is simply not giving up too soon.
Okay, looking back on that list, it looks rather boring. There’s a reason The Scientist jokingly calls me “Data” at times. But Data saved the Enterprise as often as Picard, right? I like my boring superpowers. They’re useful. They’ve served me well.
Asperger’s or Personality?
The line between my aspie traits and my other more typical personality traits can be a fuzzy one. In the absence of Asperger’s would I still have the strengths that I do? Doubtful. I’d be a different person. Look at my list of strengths. Do you see compassionate, caring, or intuitive on it? How about spontaneous, sympathetic or a team player? I am all of things in varying degrees, but they aren’t my strong points.
My strengths are typically Aspergarian. Without Asperger’s I might be a less extreme form of myself–a blend of my current traits with neurotypical traits. I fear that I’d lose most of my superpowers, though I might gain other superpowers in place of them.
Do NTs have superpowers? Surely they must. I think The Scientist has social superpowers. He’s remarkably charming, persuasive, likeable, confident and intuitive. It’s as hard for me to imagine what he would be like with an aspie brain as it is for me to imagine myself as an NT.
Not that I ever really do. I like being an aspie. Sure it’s a pain in the ass sometimes, but take away Asperger’s and I’m no longer me.
I like me! Have I said that? Are you tired of hearing it yet? Because this is important. I’m autistic and I like myself. There are people who would find that hard or even impossible to believe.
I like being a little different. I like my aspie strengths and superpowers far more than I dislike my aspie weaknesses. Let’s face it, everyone has weaknesses. Everyone faces challenges. The perfect person, the perfect life–that doesn’t exist.
What Are Your Strengths and Superpowers?
The idea of a distinct set of aspie strengths has its roots in Tony Attwood and Carol Gray’s “The Discovery of Aspie Criteria.” They proposed seeing Asperger’s as a set of strengths and talents rather than a syndrome of deficits. If you’ve never seen the list, you can find it in that article–scroll down a few screens until you see the numbered lists. If you haven’t yet identified your aspie strengths and superpowers, it’s a great place to start.
It feels good to check “college graduate” off my list of Important Life Accomplishments, but I got something far more important out of college than a degree.
I got Asperger’s Syndrome.
Not literally, of course. I was born with Asperger’s, but I managed to get through more than four decades of my life without knowing it. The process of attending classes made me realize how different I am from most people. Until I ventured out onto campus, I’d carefully structured my life in a way that let me avoid having to face my differences too often or too blatantly.
I’ve been my own boss since I was 19, which has allowed me to decide who I work with and how. I make the rules. I decide what’s acceptable workplace behavior. Walking around in my socks? Yes! Bringing my dog to work? Why not? Eating lunch in my office with the door closed? Totally normal.
By ensuring that I was the one making the rules, I wrapped myself in a cocoon of relative safety. If I didn’t want to do something, I delegated it, hired someone to do it, or avoided it.
Taking classes at a university forced me to follow someone else’s rules if I wanted to succeed. I was judged on not only my academic work but my communication skills. My ideas were subject to scrutiny. I had to make presentations and work in teams. There was no locked door to hide behind while I ate lunch.
This was a lot to put up with. On the other hand, I really wanted to get a degree, to prove that I might be a little late, but I could make it through college.
I did my best to fit in where I could. When things got rough, I sucked it up and muddled through, telling myself that as a ‘returning student’, most of the young people in my class were going to look at me funny anyhow.
It’s hard to say when I went from thinking “I’m a little odd” to “maybe there’s something systemically different about me.” The process was a lot like putting together a puzzle–connecting pieces here and there, assembling bits of the scene but not being able to see the whole picture until dozens of those little connections are made.
A few of the key puzzle pieces:
The sociology class assignment that asked me to describe a time when someone’s body language didn’t match their words. My initial response: What body language? When we shared our answers in class, I discovered how unusual it is to not instinctively notice body language.
The way professors so often asked me if I had a question or looked at me while asking something like is everyone following what I’m saying? I didn’t know it at the time, but I often frown (a sign of confusion) when I’m concentrating.
The universal look of surprise I got from professors after the first test or paper was graded. I rarely speak in class and when I do, it’s a crapshoot whether I’ll completely misinterpret a question, give an off-the-wall response or get the right answer. But write a 30-page paper about the economic impacts of environmental regulation? Yeah, I’m all over that.
Everything Becomes Illuminated on a Random Winter Day
It wasn’t until I came across a feature story on Asperger’s Syndrome last winter that the puzzle pieces started to reveal the bigger picture. While I’d heard of Asperger’s, I’d never considered that it might be something that applied to me. Sure I could see myself in the some of the symptoms, but who didn’t? It was easy to explain away the similarities.
I’d told myself that having Asperger’s was similar to being shy–like a really bad case of shyness–which made it easy to write off. I wasn’t that shy was I? I had a job, a child, a husband. I interacted with people when necessary.
I carefully avoided the qualifiers. I had a job that I’d structured around all of my little neuroses. I had a child to whom I’d stopped saying the words “I love you” as soon as she was old enough to talk. I had a husband who was growing increasingly frustrated with my often cold, controlling behavior. I interacted with people when necessary and no more.
There is a certain element of good fortune that allowed me to get away with all of the hacks and workarounds I’d devised to compensate for my deficits. Through a combination of luck and a willingness to take risks that a lot people wouldn’t, I’d managed to create an environment that capitalized on what I could do and masked all of the things I couldn’t do.
Being in school upset the delicate balance I’d worked so hard to cobble together and suddenly it became hard to avoid the qualifiers.
When I read that feature story, I felt like the writer was talking about me. Not about someone like me, about me. I don’t know what made that story different from the others I’d read about Asperger’s (and there had been many–my fascination with AS alone should have been a big red flag that my subconscious was trying to tell me something).
Maybe I was finally ready to see the big picture and I’d assembled enough of the little clusters of puzzle pieces to make that possible. Whatever the cause, the result was a feeling of lightness–like Asperger’s Syndrome was this giant bucket that would hold all of the things about myself that I’d found confusing and painful and shameful and frustrating and hard. Maybe putting those things in the bucket would mean that I wouldn’t have to juggle them anymore.
Intrigued, I did some more reading and it quickly became obvious that Asperger’s is more than a collection of social and communication problems.
There were dozens of little tells that were undeniably me and had nothing to do with being shy or introverted. The way I often talk too loudly or too quietly. The intense interests in unusual topics. My blunt honesty. My heavy dependence on lists and routines. The way I don’t recognize people “out of context.” My discomfort with compliments. The list was long enough for me to finally admit that it might be a good idea to get evaluated.
As hard as that admission was, once it became clear that I have Asperger’s, my first reaction was relief. It explained so much about my life that I’d thought was my fault–for not trying hard enough or being good enough. It wasn’t an excuse but it was a hell of a good explanation.
Armed with that explanation, I’ve immersed myself in learning more about how my brain works and how that impacts my life. As I’ve learned more about Asperger’s and about myself, the initial relief has given way to a rollercoaster of emotions: anger, grief, resentment, fear, surprise, confusion, acceptance, joy, optimism and increasingly a deep, liberating sense of quiet.
So yeah, the diploma is nice, but what came with it–the knowledge that I have Asperger’s Syndrome–is something that’s changed my life.
Musings of an Aspie 