Presume autistic competence in intellect, and emotion, too

“If your treat an individual… as if he were what he ought to be and could be, he will become what he ought to be and could be.”
~ Johann Wolfgang von Goethe

In my adult years, after a bit of humility came my way and much effort was put into communicating kindness, yet getting nowhere with those around me in the matter, I started to wonder how this could be. This is when I discovered, quite by accident, a description of Asperger’s syndrome in adult women. And the answers started pouring in. It seems that like many autistics, I’m not adept at identifying my feelings and those of others, and communicating about them.

For example, if you tell me about something that makes you sad, I may look away and not speak. This may be understood as a lack of interest. In fact, I am processing the emotion. I don’t know quite what to do with it. I feel it deeply, and my empathy is overwhelming. I don’t respond until a few moments have passed and I decide that I’m going to say something, or give you a hug, or perhaps just look at you and be available for listening. But this takes a while to do, and doesn’t come naturally if at all. I’ve had 45 years to teach myself to do it. And still, at first glance, I seem callous.

When I am feeling happy, I will speak of what made me happy, not the feeling itself. I may come across as self-centered, or a braggart. But the joy makes me want to talk about the thing, not about me. There’s a gap. If someone is making me joyful or when I am feeling affection for a friend or a family member, I will glow. But it took me a lifetime to learn to express these feelings somewhat, so that the other person may know and share in them. Unless I do, I may seem distant, uncaring and cold. But I am not – I feel emotions very strongly.

After much reading up on the subject (there are a few references at the end of this article), I started to write. The result below is  quite a ramble. But I hope it sheds some light on our perceptions and can change a bit what we think we know about people in general.

In the last few decades, since studies have started to surface suggesting that autism does not correlate conclusively with intellectual disability (including the 2014 CDC report on autism*), the word out there for sensible practitioners and researchers has been to “presume competence” in autistics, meaning that until proven otherwise, an autistic person should be deemed as an intelligent and capable human being. But for non-autistics, this is hard to do.

As clearly as autistic self-advocates may have put the point across – Amanda Baggs, especially in her video manifesto, Judy Endow, Amy Sequenzia, Larry Bissonette, Tracy Thresher, Carly Fleischmann and numerous others – or as factually as Dr. Laurent Mottron in his research and regular public interviews and testimonials, and numerous other researchers and autism advocates and practitioners express this necessity, presuming competence is somehow still hard to put in practice.

Why? Because surely centuries of equating hand-flapping, rocking and spastic behavior with mental retardation has made it difficult to disassociate them. But also because the equation between intelligence and communication is difficult to circumvent: If one cannot communicate properly, how can one be intelligent? Yet this is intellectually easy enough to defeat. For example, it is widely accepted that Dr. Stephen Hawking is one of the foremost intellects of humankind, though he cannot speak. But this is not true, you say! He can communicate through speech with the help of a machine. And so can Amanda Baggs, Tracy Thresher, Carly Fleischmann and any non-verbal autistic person given the chance to learn, barring cognitive obstacles too great. Yet it is a fact that impaired communication still seems to provoke an assumption of intellectual disability. This needs to be consciously set aside: intellectual ability should be presumed, always.

But this is not the entire subject of my speaking out today. My objective is two-fold: to illustrate competence, yes, but not only on an intellectual level.

One must also presume affective competence. That is, the fact that autistics of all capacities are able to not only think, but also feel emotions just as much as anyone else.

Now why would this need to be stated? For one thing, the very criteria by which autistics are recognized by the world out there (notably the DSM 5) stem in part from our inability to communicate our feelings in a way that is understood by the majority, i.e. we look like we don’t have emotion, because it’s not communicated in the usual ways. And just as not speaking looks like a lack of intelligence to an outsider who does not know to presume competence, not showing emotion in a socially standard manner looks like there is no emotion present. And yet there is!

What prompted me to write about this is the repeated assurance, from a therapist, of my capacity to analyze my own feelings and relate to those of the people around me in remarkably intricate detail. This from a psychologist I trust implicitly for her empathy, professionalism and intellect. I was surprised at this affirmation.

Why the surprise? My whole life, I have regularly been treated by my family and many close friends and partners with the contempt reserved for immature, excitable beings. And as such, I believed myself to be flawed. And then, through my yet limited clinical knowledge about autism and its related emotional caveats, I assumed that I was emotionally handicapped.

Discovering that my emotional intelligence is on par with that of the average Josephine was quite the revelation. Indeed.

Additionally, since I started reading the works of autistic authors, and corresponding with new autistic acquaintances and friends on forums and other groups online and offline, what strikes me consistently in the large majority of my peers is their high sensitivity and their remarkable capacity for empathy, non-judgment, kindness and understanding. In one word: compassion. And this is not the kind of compassion that whines along, echoes and pities – no, it’s compassion the way Kundera describes it, the “feeling with”. Blunt, I’ve-been-there-too, let-me-tell-you-how-I-see-it compassion. That which comes from shared experience, candor, and humanity.

To understand this dichotomy of significant affective empathy (I understand that you are feeling unhappy) and impaired cognitive empathy (I can’t deduce the reason why you are feeling unhappy, or what I could do about it), I recommend Simon Baron-Cohen’s TED Talk on the subject, The roots of good and evil. Dr. Baron-Cohen is not the best advocate for autistic people, to say the least. But this presentation nails it.

After much error and many theoretical shortcuts, most enlightened researchers on autism now agree that theory of mind (“[T]he ability to attribute mental states—beliefs, intents, desires, pretending, knowledge, etc.—to oneself and others and to understand that others have beliefs, desires, and intentions that are different from one’s own” – Wikipedia) must be pondered in a subtle way, by distinguishing cognitive empathy and affective empathy.

Cognitive empathy means knowing how an emotion might be produced in others (and oneself) and what its practical consequences may be, in large part according to common social norms, reading body language, and projection. This is a challenge for many autistic people.

Affective empathy means, basically, compassion. It means understanding that another person feels an emotion, and being able to relate to it by feeling it as well, or a relation emotion. This is not affected in autism. In fact, from what I’ve seen and read from my peers, for us it’s often quite strong. Perhaps it sometimes serves to compensate somewhat for a lack of cognitive empathy, in a similar way that auditory or tactile information may compensate for a lack of visual information for blind people.

So, to summarize: where cognitive empathy is based on the “why” and “how”, affective empathy is centered on the “what”.

Here’s an example: If someone I know walks into a room after a job interview and they are projecting gloom from their facial expression, tone of voice or general behavior and I can observe this, I don’t assume that the interview went badly. I don’t assume anything. But I may wonder what’s wrong. If we have a close relationship, I may even ask. And perhaps for not guessing why, I may be considered callous. But I am not. I am just not assuming anything. And if I learn by being told about the interview gone wrong, I will be sad and worried along with them.

Cognitive empathy serves to know what’s going on and how the person is feeling based on general knowledge of events and human reactions. It means that one would assume, for example, that someone who is looking upset + just came out of a job interview = the job interview went badly. This may seem obvious. But for many autistics, it is not.

In my mind, my friend could be in a low mood because of an infinite number of possible reasons stemming from an infinite number of life events. Since I don’t have knowledge of all that happened to them while we weren’t together, I cannot deduce why they seem to be unhappy. For example, they could be feeling down because someone stole their parking space; because a relative just became sick; or because of a saddening world news event. If they mention the job interview and I’m thinking about their mood, I will perhaps make an association, but I still won’t assume the link with their emotion. I have to ask if I can, or wait for them to tell me.

Another aspect of cognitive empathy relates to response. In this same failed job interview scenario, someone who has good cognitive empathy will say out loud something appropriate to comfort their friend or invite disclosure. Someone lacking in cognitive empathy may not know what to say, or not even know that they should say anything, or say something quite inappropriate in an attempt to match expectations or be helpful.

Affective empathy, on the other hand, serves to relate to another person’s feelings on a purely emotional level. For example, if my friend is gloomy, I may know that they feel bad and feel it too, but not knowing why. If they then tell me that their job interview went badly and that they are worried about their future, I will feel upset as well. If they add that they are okay with it, I’ll be relieved somewhat. If they ask me for comfort, I’ll want to oblige in the best way I know. I don’t necessarily know what will work, but I’m willing to try, because I want to help. I may not succeed and do nothing, too. This doesn’t mean I don’t feel the emotions. Other autistics in emotional situations may have different misleading responses, such as turning away, melting down or engaging in stereotypical behavior to vent the overwhelm of emotion.

With experience and goodwill,  everyone can gain some capacity for supporting cognitive empathy. Learning to recognize the signs of emotions in oneself, paying attention and self-care can go a long way toward that goal. For the language-able, it can be useful to develop a habit to ask a friend about their day or week, or developments about a certain life event or subject we know is important to them. It can also be done through reminding oneself to express or display signs of positive feelings when they occur, sympathy when appropriate, and disagreement when useful, and doing all appropriately, that is, with tact, a measure of reserve and with the other person’s interest in mind. This is, if you will, putting affective empathy to good use.

It is a conscious effort, like remembering to bring a key when leaving the house or brushing one’s teeth. It doesn’t come naturally and requires practice. But the reward of these efforts is enabling better human connections. Everybody needs love and a sense of belonging, autistic or not. We just don’t come equipped to connect easily.

The effort also goes both ways. If the person your are with doesn’t communicate emotion in a way that you expect, that doesn’t mean it’s not present. There’s also no obligation to communicate emotion in a standard way. Sure, it can be useful. But it should never be demanded.

Like verbal or written communication, socially constructive emotional interaction – words or actions that can be used to echo another person’s practical and emotional needs, to convey information, to connect and build trust – is a skill that can be learned in the person’s own style. And in order for this learning to be possible, competence must be presumed.

Please, do presume competence. When an autistic child or adult does not respond to a social prompt with an explicit show of understanding or feeling, please go beyond your own expectations, and presume that they can understand the words and feel the emotions. They perhaps do not process facts and feelings in the same way as you do in their understanding, and perhaps they are not expressing thoughts or emotions in the way that you expect. But they do think and feel emotions, often as much and possibly more than another child or adult in the same situation. And just as intelligence can be helped along to manifest in verbal, written or facilitated communication, so can emotions be helped along to be understood and manifested in words or actions. But this entails presuming their very reality.

* The CDC article 10 Things to Know About New Autism Data (March 2014) states: “Almost half (46%) of children identified with ASD had average or above average intellectual ability (IQ greater than 85).” With these numbers, the study tells us that intellectual ability in autistic children is close to that of the general population, where 50% of children are above average. This means that 4 autistic kids in 100 present differences in intellectual capacity compared to the average, which is much lower than previously reported numbers. In addition, differences in development styles could very well impact on these numbers and lower the statistics further as the children get older.

Updated January 16, 2015 with CDC statistical data and tweaking for better phrasing.

References

Edelson, M.G. (2006): “Are the majority of children with autism mentally retarded? A systematic evaluation of the data”. Focus on Autism and Other Developmental Disabilities. 21, 66-83. http://foa.sagepub.com/content/21/2/66

Rebecca Brant, Bobbie Hasselbring (2006): “Wrong”. The Scene, Spring 2006, Vol. XXIII No. 2. http://www.willamette.edu/scene/editions/2006/spring/28/

S. Chakrabarti, E. Fombonne (2001): “Pervasive developmental disorders in preschool children”. JAMA. June 27, 2001, Vol 285, No. 24. http://jama.jamanetwork.com/article.aspx?articleid=193955

Centers for Disease Control and Prevention – CDC (2014). “10 Things to Know About New Autism Data”.  CDC website. March 31, 2014 update. http://www.cdc.gov/features/dsautismdata/ Full report: http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6302a1.htm

Baggs, Amanda (2007). In My Language. Video. http://www.taaproject.com/in-my-language-by-amanda-baggs/ and Youtube.

Judy Endow (2013): Don’t Define Me By My Deficits. Ollibean. Sep 23, 2013. http://ollibean.com/2013/09/23/dont-define-deficits/

Amy Sequenzia (2012): Presuming Competence. Ollibean. Apr 19, 2012. http://ollibean.com/2012/04/19/presuming-competence/

Amy Sequenzia (2013): How Presuming Competence Helps. Ollibean. Oct 25, 2013. http://ollibean.com/2013/10/25/helps/

Tracy Thresher (2012): The right to Communicate. Wretches and Jabberers. October 30th, 2012. http://wretchesandjabberers.org/tracy/?p=313

Sue Rubin (2003): Myths About Autism and Mental Retardation. Facilitated Communication Symposium Whittier, CA April 3, 2003. http://sue-rubin0.tripod.com/Presentations/Facilitated%20Communication%20Symposium%20myths.htm

Sue Rubin (2013): An Invitation to See Autism As I Do. An invited talk given to Hiram College students planning on careers in health care. Hiram College, Hiram, Ohio,  October 29, 2013. https://sites.google.com/site/suerubin696/platform

Maia Szalavitz (2009): “Theory finds that individuals with Asperger’s Syndrome don’t lack empathy – in fact if anything they empathize too much”. Reproduced and augmented with references from the original publication in the Toronto Star, May 1, 2009. http://seventhvoice.wordpress.com/2013/11/16/new-study-finds-that-individuals-with-aspergers-syndrome-dont-lack-empathy-in-fact-if-anything-they-empathize-too-much/

Maia Szalavitz (2008):  “Do supercharged brains give rise to autism?” New Scientist. September 20, 2008, 34-37. Retrieved from http://www.mdjunction.com/diary/the-green-bucket/do-supercharged-brains-give-rise-to-autism-article-

Laurent Mottron (2011): “Changing perceptions: The power of autism”. Nature 479, 33–35. November 3, 2011. go.nature.com/pI8guK

Simon Baron-Cohen (2012): The roots of good and evil: Simon Baron Cohen at TEDxHousesofParliament. TEDxHousesOfParliament. Video. http://tedxtalks.ted.com/video/The-erosion-of-empathy-Simon-Ba and Youtube

K. Rogers, I. Dziobek, J. Hassenstab, O. T. Wolf, A. Convit (2006): Who Cares? Revisiting Empathy in Asperger Syndrome. J Autism Dev Disord (2007) 37:709–715. Published online by Springer Science+Business Media, Inc.  http://www.cog.psy.ruhr-uni-bochum.de/papers/2007/Rogers%282007%29_JAutismDevDisord.pdf

Adam Smith (2009): “The Empathy Imbalance Hypothesis of Autism: a Theoretical Approach to Cognitive and Emotional Empathy in Autistic Development”. The Psychological Record. 59, 489-510. http://opensiuc.lib.siu.edu/tpr/vol59/iss3/9/

Wikipedia. Retrieved June 20, 2014. “Theory of Mind”; “Intentional stance”, “Empathy”, http://en.wikipedia.org

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3 thoughts on “Presume autistic competence in intellect, and emotion, too

  1. I would like to note, too, that affective empathy shows itself differently in different autistic people. Some, especially as children, can become so overwhelmed by the distress of another person that they melt down, which is generally interpreted as “bad behavior” in the face of someone else’s suffering.

    Autistic people may also struggle with recognizing emotions in themselves or others. And sometimes, they can do so better in one modality than another. While you may be able to tell a friend’s bad mood from her gloomy face, another autistic person may have difficulty reading facial expressions, but be able to tell that a friend is sad by her tone of voice. Yet another may not recognize these signs of sadness at all, but will respond with great caring and sympathy once they are informed in words that their friend is unhappy.

    There are many valid ways to be a caring person, and I wish more of them were acknowledged. I also wish more people were willing to sit down with children, autistic and otherwise, and explain to them why people feel certain ways about certain things.

    • Thank you *so* much for adding to the message, and pointing out aspects that were missed. Indeed. Not recognizing facial expressions is very common for autistics, as are not recognizing voice inflections, or body language. It’s also true that many of us aren’t aware of these in ourselves – tone of voice, facial affect, body language. These differences in communication are essential to keep in mind. And in that realm, knowing that a meltdown may be the result of overwhelming empathy – too much emotion to bear.

      And yes, emotional education! Ah, shouldn’t this be part of the regular grade school curriculum? Basic emotions, complex emotions, why we feel them, what to do with them. A great send-off for knowing oneself and encouraging empathy and well-being for all kids.

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