by Brenda Rothman
What’s a diagnosis for children who lack empathy, have an inability to relate to others, aren’t interested in friendships, and don’t experience a full range of emotions? If you answered “autism,” you have bought into the Data Myth.
These days, more people know about autism. Some of us have personal experience, either as parents or as individuals diagnosed with autism. And some people have, at least, heard the word through autism awareness campaigns. We think we know what autism is and we try our best to describe it. But as parents, professionals, and individuals who have experience with autism, the words we use to describe, teach, or tell stories are powerful. And sometimes our words are based on inaccurate paradigms of autism, perpetuating stereotypes that don’t reflect reality.
One subtle and stubborn myth is the idea that a child with autism doesn’t have typical emotions and can’t relate to emotions in others. The child with autism is described as if he were Data, an android from Star Trek: The Next Generation, who is unable to feel emotion and has trouble understanding human nature. The characterization of a person with autism as someone who isn’t affectionate or loving, who can’t understand someone else’s pain or suffering, and who must be taught appropriate emotions is part of the Data Myth. The myth has infiltrated medical, professional, and family discussions. It affects how we interact with our children, how we feel about our children, and how we treat them therapeutically. Children with autism are not androids who are less emotional, less affectionate, or less human. They are real, complete, whole children who happen to have communication challenges.
Doctors are the first people we look to for explanations of autism, but many are to blame for spreading the Data Myth. For example, medical descriptions of autism often include lack of empathy as a symptom. Sites that spread this incorrect stereotype include WebMD, The University of Michigan’s Psychology Department, Wikipedia, and EverdayHealth. And it is a myth. Children with autism have empathy. They may behave differently. They may communicate differently. They may need more time to process the event and the emotions. They may even experience emotions too intensely. But they don’t lack empathy. Here’s what happens. Doctors observed a child with autism. The child reacted atypically, such as laughing when someone cries. The doctors jumped to a conclusion, rather than stating the fact. That’s not science. Doctors don’t have an internal microscope that surveys the brain, heart, or soul and finds a gaping hole where empathy normally resides. What they observed is an atypical reaction and they didn’t investigate further. In fact, it could be an excess of empathy that causes an overwhelmed response, like nervous laughter. The same is true for the so-called symptom of a “lack of interest in sharing enjoyment, interests, or achievements with other people.” Doctors can’t determine the child’s inner feelings or “lack of interest.” They may see the child not interacting. The child may need help engaging with other people. The child may need help communicating with other people. The child may even need help with enjoyment because of anxiety. But it’s not that the child isn’t interested in sharing things with people. It’s the same with “inability to relate to others” and so many other alleged characteristics. Describing children with autism with inaccurate assumptions furthers the idea that they lack basic human emotions. Doctors should know better.
Researchers are no less to blame. Scientific research is required to be unbiased. Researchers have ethical obligations to eliminate prejudicial paradigms from their research, but how do they describe children with autism? In one study, a researcher wrote, “Faces fail to hold the attention of a child with autism.” Here again, that sentence is a conclusion, not a fact. The researcher does not know if the child is inattentive to the face. It could be the child is paying attention in a different manner, like using peripheral vision. It could be that the child is attentive to the face, but is overwhelmed by visual input. The difference between “faces fail to hold the attention of the child” and “child gazes at faces for less time” is a subtle difference, but it’s an important distinction. By implying that children with autism are not interested in people, the researcher adds what is presumed to be objective science to the Data Myth. We need researchers to state the facts, not reinforce a stereotype.
Programs for children are not immune from the Data Myth. It’s why I balk at programs that call for children to be taught by robots. Do we think that children with autism would learn better from robots, rather than people? Because our children would better relate to a logical, unemotional robot? Because we adults can’t adjust ourselves to our children’s needs? It’s why I’m vexed by programs that use lab coats, checklists, and skills and drills for children, instead of play. All kids learn through play, even children with autism. In fact, children with autism might need play even more than other kids so they can deal with the anxiety, worries, and upsets they experience. We should ensure that therapies are playful and child-appropriate. And what about programs that suggest that children can’t learn social skills from their parents or siblings, and instead must be taught social skills by therapists? It’s also why I worry when people say that children with autism need to be socialized at school. Socialized? It sounds like they need to learn how to be civilized little humans. And at school? That idea presupposes that groups of kids are the best environment. It assumes that they aren’t already learning about relationships and social problem-solving at home. Programs for our children shouldn’t be satisfied with teaching them rote responses or superficial ways of behaving. Is the underlying assumption the Data Myth?
The Data Myth may even have influenced individuals in the autism community. When an adult with autism describes never having experienced love, that is her experience, but it’s not true of autism or of other people with autism. When a person with autism refers to his computer brain that uses images to understand emotions, that’s his experience. But it’s not necessarily true of autism. Individuals with autism have their own personalities, characteristics, and experiences.
And how does the Data Myth affect parents? If we buy into the myth, even subconsciously, we write off our children’s humanity. It makes us feel a distance that doesn’t have to exist. We may overlook our children’s emotional needs. We might even think they don’t notice us. Or love us. Or we might miss their unique expressions of affection, sadness, or loneliness.
We need to be on guard against the Data Myth and the stereotypes it perpetuates. Children with autism may sometimes react differently, but that doesn’t mean they lack human emotions. We need to think about, write about, and treat children with autism with the understanding that they experience a full range of emotions but have trouble processing and communicating them. We need to understand that they are interested in people and want to interact, but that they have sensory or communication issues that make it difficult. We need to challenge the medical community to rise above these stereotypes. And we need to see our kids as already whole and complete children, not as faulty.
The Data Myth is an flawed paradigm that needs to end. It’s caused enough problems already.
About the Author: Brenda Rothman, the mother of an autistic son, writes about autism, parenting, and shoes on her blog Mama Be Good http://mamabegood.blogspot.com/. Brenda is also on Twitter @mamabegood, where she enjoys margatweetas, and on Facebook at https://www.facebook.com/mamabegood, where she spills coffee creamer.
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The Data Myth first appeared on Brenda’s blog and is reprinted here with permission.