Some people on Daily Kos have criticized me for how I think about things, interact socially, interpret their remarks, or persist in refuting inaccuracies. I am used to such criticisms because I have heard them in the “meat world,” too. Others have made similar remarks about my children. You see, my children and I have an autism spectrum disorder (ASD).
Our original diagnosis was Asperger Syndrome, (AS) but AS was eliminated as a diagnosis from the DSM-5 and folded into ASD. Here is a link to the full text of the diagnostic criteria for ASD per the DSM-5. The DSM-5 also introduced “Social (Pragmatic) Communication Disorder, which has many behaviors or symptoms that overlap with autism.
April is National Autism Awareness Month, and I wanted to share information that might help “neurotypical” people (that’s what we call those of you without an ASD) better understand autistic people and how they communicate. Our population is sizable. According to the CDC, about 1 in 68 children (1.5%) has an ASD. The rate in my state of New Jersey is 2.4%.
The first thing to appreciate is that autism truly is on a spectrum. People at the more severe end of the spectrum are unable to communicate or care for themselves, whereas those least affected are often very successful. Most people with autism fall somewhere in between.
Initially, I doubted that I had ASD because some pieces did not fit. High-functioning people with autism often perform better at math and science than at language, reading, and writing. Yet I had learned to read without being taught at an early age, could read newspapers at age 3, and work as an editor and writer. (Precocious reading is also called hyperlexia, which I later learned is sometimes observed in children with autism.) I have never been great at math. I was also a relatively social child, at least compared with my sons.
In exploring this, I exchanged e-mails with autism expert and psychologist Tony Atwood, who had written about AS in girls. He offered this explanation (paraphrasing):
Imagine that there are 100 autistic traits, and you only need 50 to have autism. Although a lot of people would have some key traits in common, the population would be very diverse.
Much of the early information about autism comes primarily from studies involving males because ASD is more commonly diagnosed in males. Recent studies have identified important neurobiological differences between girls and boys with autism that may explain behavioral differences between them.
Girls and boys had similar scores for social behavior and communication. But girls had lower (more normal) scores on a standard measurement of repetitive and restricted behaviors...
The researchers [also] found that parts of the motor system that contributed to individual scores for repetitive and restricted behaviors were different in boys and girls.
As a result of these differences, autism may be overlooked in females. Some evidence suggests that it takes more genetic mutations or more severe genetic mutations to cause autism in females than in males.
Autism is characterized by neurologically based social impairments, communication difficulties, and repetitive or restricted behaviors. Much of the research has been done in children and extrapolated to adults. The Indiana Resource Center for Autism lists several language and social communication characteristics associated with autism. Not all of this fits my experience, but no two people with autism are alike.
Some people with autism may sometimes or frequently the following language issues (I’ve bolded ones I struggle with the most):
- Exhibit a good vocabulary and sophisticated command of language but not always comprehend the language’s full depth of meaning
- Have difficulty interpreting figurative language, including idioms, metaphors, similes, and irony
- Fail to appreciate words’ alternate meanings in context
- Interpret language in a very literal manner
- Struggle to see the big picture or draw inferences, particularly when the information has an emotional subtext
- Have trouble understanding humor
- May attend primarily to key words rather than the message conveyed by the grammar, especially if the sentence is grammatically complex
- May have difficulty with reading comprehension if comprehension of oral language is poor
- When reading or listening, may struggle to connect ideas from one sentence to the next
Communicating in a social setting is challenging for people with autism, whether in person or digitally. Autism also affects how we interpret communication witnessed between other people, either in person or in a book or movie.
Here are some social communication issues people with autism may face (again, I’ve bolded ones that trouble me the most):
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Tend to interpret things from their own point of view and struggle to “see” through someone else’s eyes or recognizing that other people have different “filters”
- May not pick up on others’ motivations, which can leave autistic people gullible and vulnerable to abuse
- Little to no eye contact (in fact, a recent study found autistic people are more likely to watch mouths)
- Speak too loudly or too fast
- Have trouble sticking to the main topic after becoming distracted by alluded to side topics
- Deliver monologues, lectures, or lessons about a favorite topic rather than allow/participate in reciprocal dialogue
- Talk aloud to themselves in earshot of others without awareness (my youngest son does this all the time)
- Struggle with auditory processing, especially when emotional
- Say true but socially inappropriate statements with no awareness of how they might be perceived
- Not know how to start, continue, or end conversations
- Have trouble adjusting topic, vocabulary, grammar, or tone for the intended audience
- Start conversations without providing enough information for the other person to understand the topic or assuming the listener knows what you know
- Fail to recognize the need for or to seek clarification of incoming messages
- Generally bad at deception
- Have good recall of names, facts, and/or trivia but may have only superficial depth of knowledge about a topic
- Introduce esoteric topics without perceiving the listener’s disinterest
- Be nonselective about when, where, and who to discuss certain topics with
- Be perseverative or bothersome on limited topics
- Desire friendships but not know how to foster them
- Have trouble recognizing when others lie or mislead
- Miss nonverbal cues in social situations
- Recognize basic emotions but struggle with more subtle emotional expressions
- Have trouble picking up on others’ emotional states or responding to them
- Have difficulty predicting possible outcomes or others’ motivations (concrete and socially naive)
- Have difficulty multi-tasking
People with an ASD may come across as egocentric or rude. However, it is not that we do not care about how others feel or are indifferent when we unintentionally hurt someone. Early stereotypes of autistic people described them as lacking in empathy. Newer hypotheses say autistic people may have too much empathy and withdraw emotionally because they cannot cope with the intensity of their feelings. This is part of the “Intense World Theory.”
It proposes that autism is the consequence of a supercharged brain that makes the world a painfully intense place.
It suggests that the symptoms of autism are the result of people being forced to develop strategies to actively avoid the intensity and pain.
The theory predicts that a child with autism retreats into a controllable and predictable bubble to protect themselves.
The assertion that people with autism lacked empathy initially led me to deny that I was autistic. I literally experience temporary depression after watching emotionally charged movies like “Radio Flyer” and “Prisoners.” Even thinking about these movies now makes me feel sick and upset.
Most autistic people I know agree that they are highly empathetic and reject the idea that they lack empathy. However, my empathy has a nuance the research does not appreciate. I am highly empathetic for book/movie/television characters or people I do not know, but I have to feign emotional empathy for acquaintances and friends. I have an intellectual appreciation for their pain when a loved one dies, for example, but I feel nothing. In other words, I have cognitive empathy but lack affective empathy.
I recognized this issue before I knew about autism. I found I had strong empathy for news or media involving young boys around my sons’ ages than for those involving girls or adults. Interestingly, as my kids aged, my empathy shifted from younger boys to older ones. I stopped crying at movies in which young boys were traumatized. Also, when my middle child announced she was trans, I started to feel tremendous pain at what transgender women experience. It is almost like I struggle to feel empathy for others unless my life provides me with a way to step mentally into their shoes.
Updated research from the creators of the “Intense World Theory” supports the idea that the brains of autistic people are “supercharged” and that autistic people are “unusually sensitive” to the environment in which they are raised. This dovetails with the fact that many autistic people have sensory processing disorder (SPD). SPD is a distinct condition and one which I and my children have. People with SPD can be hypersensitive or hyposensitive to sound, sight, touch, texture, temperature, and taste.
Children with Sensory Processing Disorder often have problems with motor skills and other abilities needed for school success and childhood accomplishments. As a result, they often become socially isolated and suffer from low self-esteem and other social/emotional issues.
These difficulties put children with SPD at high risk for many emotional, social, and educational problems, including the inability to make friends or be a part of a group, poor self-concept, academic failure, and being labeled clumsy, uncooperative, belligerent, disruptive, or "out of control." Anxiety, depression, aggression, or other behavior problems can follow. Parents may be blamed for their children's behavior by people who are unaware of the child's "hidden handicap."
SPD has compromised my ability to function, especially in the work environment. For example, I shared an office with a colleague who ate a bowl of cereal every morning. Her metal spoon scraping the ceramic bowl drove me crazy, so I invented a reason to give her a BPA-free plastic bowl and spoon. The smell of another colleague’s daily microwaved Greek lunches made me sick to my stomach (and I love Greek food). Even mild sensory distractions can make it difficult for me to focus or complete a task.
I even find accepting hugs difficult. When I was a new mom, before I knew I had autism, I made myself hug my children regularly and touch them. It was not instinctual for me, but I knew that was not normal, and I wanted them to learn to enjoy hugs. Of course, once I learned about their autism, it explained why they did not like the hugs and kisses I foisted on them!
Several Daily Kos users have mentioned that they have an ASD. Sometimes, our comments get flags, and we have no idea why. The language and social impairments associated with autism have led some to stereotype it as “the asshole syndrome.” In an episode of House, who is clearly on the spectrum, his friend Wilson (why is it people in TV shows often address each other by last names?) ended the episode with, “You don’t really have AS. You’re just a jerk.”
I hate that I make that impression on some people, but I understand it. Before I found out my ex-husband had autism, I thought he was a jerk, too. But autism explained why he exited the car without ever saying goodbye or why, when I asked him to help me choose an item from a lingerie catalog, he said, “Why? They never look like that on you.” He wasn’t being mean, he was being honest.
So, I get it. Some of you think I am a jerk. I may be a jerk and am perhaps just too autistic to recognize it (that is a joke in case it is too bad of one to come across). But if I am a jerk, blame my upbringing and not my autism because—for my kids’ sake—I would like to kill that stereotype now. If I am being objective, I have to admit I can be a jerk sometimes. I try to avoid crossing the line into asshole territory, but that may be one of those distinctions without a difference.
My occasional lapses into jerkdom notwithstanding, here at Daily Kos, as in real life, my comments and intent are also frequently misunderstood. This sometimes leads to a barrage of personal attacks that leaves me feeling bullied. The mocking is the worst. Being mocked for defending yourself against insults or aspersions or for trying to explain your thought process is discouraging. I start feeling like I should stop struggling to socialize with people who cannot understand me anymore than I can understand them and disappear. (My boyfriend’s almost daily advice is “Stop wasting time there. It’s not worth it.”)
But I’d like to stay because I like what Daily Kos represents. Before the descent into primary hell, I learned a lot here and regularly enjoyed the diaries. I am posting this long explanation of autism because if you are neurotypical, you likely have a better chance at understanding me than I do at understanding you.
Like many people with an ASD, I am rules-oriented and have a strong sense of fairness. If a store doesn’t charge me for an item, I go back inside and pay for it. I try hard to follow the rules on Daily Kos, too. I avoid calling people names. I try to avoid uprating others’ insults, although I may not always recognize a subtle insult. In fact, I have even recommended comments only to learn later that I voted up an insult against myself. (Given the clarified rule on flags, I will have to be even more careful.)
People can and have scoured my comments to dig up the rare direct insult since primary hell set in, but often, the “insult” was unintentional. When I’ve tried to explain, the explanations were often rejected and only stimulated more conflict. As an example, several weeks ago, I had a back and forth exchange with someone who sarcastically thanked me for “noticing” them. Feeling a little miffed, I replied sarcastically (at least I thought it was sarcasm), “I notice shit on my shoe, too.”
My point was that just because you notice something doesn’t mean it is good. (I had thought about saying “gum on my shoe” but rejected it because gum doesn’t smell so you don’t always notice it.) Everyone insisted I was calling the person shit, which I explained sincerely was not my intent. In lieu of the ongoing resistance, however, I decided to check with my live-in Jiminy Cricket (aka boyfriend). He said he would have interpreted it the same way. So I apologized.
My sense of fairness sometimes leads me to push a point hard, especially if I am convinced I am right. But it also leads me to own my mistakes. Recently, someone provided evidence that my information was wrong; I apologized, marked my comment as wrong, and asked anyone who recommended it to remove their rating. If you have data from a reliable source that proves me wrong, I’m receptive. Another consequence of autism is difficulty appreciating emotion-based arguments. They often perplex me.
I know I’m the one out of sync who needs to conform, but it is not as easy as it sounds. The behaviors that neurotypical people often find objectionable in people with an ASD are neurologically driven and are not consciously “bad” behavior. Our brains work differently than the brains of 98.5% of the population. I cannot will my brain to function neurotypically any more than a blind person can will himself to see. Although I can and do try to learn adaptive strategies, generalizing knowledge is another struggle for people who have an ASD:
Humans generalize routinely. For example, knowing that one should always drive on the right on the road is a generalization from one's experience and observation in specific driving situations.
A child with autism has difficulty generalizing what he learns in one setting to another setting. If he is taught to cross the street in front of the house, he needs to be taught how to cross the street in front of his school, church, playground, etc. He might not be able to display a skill he learned with a teacher to another teacher. He might know a math problem in one room and not be able to do the same math problem in another room. This is often baffling to the teacher who blames it on an issue with retention. He knew it 10 minutes ago, now he has forgot it already!
People with autism often learn skills or behaviors in one situation but have great difficulty generalizing these to a different situation. For example, they might learn to brush their teeth with a green toothbrush, then balk at brushing their teeth with a blue toothbrush. They might learn to wash plates but not realize that the same basic procedure is used to wash glasses. They might learn the literal wording of a rule but not understand its underlying purpose, and so have trouble applying it in different situations.
Individuals with ASD frequently cannot functionally use what they have learned in a structured teaching situation and be able to apply it to other similar settings or with different materials and people.
For more harmonious relationships, people with ASDs must depend on the willingness of neurotypical people in our lives to give us the benefit of the doubt when we say something hurtful or seem unappreciative. Our differences are invisible and we are often highly intelligent—but deficient in common sense—which perhaps makes it hard for those without an ASD to accept that we are not always aware of our antisocial tendencies.
For example, my neurotypical boyfriend has lived with us for 10 years. He knows my kids have autism. Yet he still struggles to tamp down his annoyance when they forget to thank him for driving them somewhere or get snippy when he interrupts them. (Interruptions can infuriate us.) They understand advanced physics and calculus, and it seems like they should be able to understand something as simple as etiquette. It does not come naturally to them, however, and they do not always remember the rules they are taught.
Then there are some rules I never thought to teach them. Being an autistic parent of high-functioning autistic children has pluses and minuses. Even before we knew about autism, I gave them the clear, direct instructions they needed because that was how I communicated naturally. My undiagnosed autistic ex-husband never gave them more than one task to attend to at a time because he had difficulty with complex lists of instructions. Also, my kids neither wanted nor expected me to spend a lot of time playing with them, which was good because I struggled to find joy in children’s activities. Once, I added a block to a tower my trans daughter was building in an attempt to engage with her in play; she became enraged and smashed it. They did not play pretend, which was good, because I always hated pretend play and had no aptitude for it.
Being an autistic parent of autistic kids also has drawbacks. A parent is a child’s best advocate, but advocating requires a lot of social interaction. It requires frequent meetings and pushing back against the system’s limitations. Another problem is that autistic people often struggle to understand each other, too. My children have different autistic traits than I do, and they are very different from each other. I cannot always put myself into their minds to anticipate their needs or solve their problems. I and they can experience bouts of irrational anger or distress, which we call meltdowns. I know I need to help them through meltdowns, but when people become emotional, I want to run away from them, not toward them. Fortunately, there are a lot of books on parenting that taught me what to do and say in specific situations.
If you want to try to communicate better with someone who has an ASD, this article from Indiana University has good advice. Below are a few of their tips that might help when interacting online with someone who has an ASD:
It will be important to remember that all individuals with an ASD experience some difficulties with the comprehension of the verbal and nonverbal messages of others in at least some circumstances.
- Be concrete and direct. State your specific message to the person with an autism spectrum disorder in a clear manner. Do not use figurative or abstract language such as “shake a leg” when you want him or her to hurry. Figurative language can be very confusing to someone who interprets everything very literally.
- Do not expect the person with an autism spectrum disorder to interpret your intended meaning if it is not obviously and explicitly stated. He or she will probably find it very difficult to make inferences and to understand subtleties or hidden meaning.
Here is additional advice from a blogger named Steve Summers, who was given an ASD diagnosis as an adult:
- We tend to take things literally and have often trouble reading between the lines. As a result, we may ask a lot of questions to clarify what is meant by something that you say...Don’t be offended by this.
- If we misunderstand something that you say, please be patient and expand on what you said and explain what you meant. Don’t assume a negative or hostile intent from us if we misunderstand something that you said. Keep in mind that communication can be difficult for us. Things that come naturally to you take extra effort by us.
- Please don’t get offended by our communication style. We tend to be frank, honest and matter of fact. Some people may interpret this as blunt or rude. We don’t intend to offend you by not sugar coating the things that we say. We don’t intend to be rude. Please don’t get defensive or assume that we are attacking you. Remember that communicating is hard for us. Don’t make negative assumptions. Too often we get corrected or attacked by someone who fails to give us some slack and the benefit of the doubt.
- Please keep in mind that we most likely have been rejected, excluded, ridiculed or bullied in the past. If we seem anxious or insecure this may be due to living in a world that misunderstands us and is often hostile to us. We have to work hard to reach out to others. Please work at reaching back to us with understanding and kindness.
- Please don’t assume that we lack empathy or emotion. We pick up on negative or judgmental attitudes. We know when people look down on us or are hostile to us. We will shut down if you show us a lack of respect.
I could relate to many of Summers’ comments. He has additional advice that can help with in-person communications. Do not be offended if the person with an ASD does not make eye contact. Do not be surprised if they have a flat affect. Do not correct them for hand flapping or other hand movements. Do not yell or speak to them in a harsh tone. Do not touch them—even to pat them on the shoulder—without asking. Do not get offended if they ask a lot of questions. Ask questions yourself if you want to know what they like and don’t like or to determine their communication style because we are all different. Also, don’t make fun of people with ASD who have limited food choices. My 17-year-old gets very upset at this.
There are many more of you than there are of us, and sometimes it is overwhelming when we get piled on for an unintentional insult or an attempt at humor gone awry. If you’ve managed to read this far, then I thank you for being someone who really does want to learn how we might be able to communicate better.
(I am sorry this is so long, but I’ve been bottling a lot up since I joined here in 2004.)