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De-Mystifying Autism Spectrum Disorder (ASD) and Supporting Neurodiversity














By Jennifer Keluskar, Ph.D.

There are many misunderstandings about the complex neurodevelopmental disorder known as Autism Spectrum Disorder (ASD). The focus of this post is on understanding the misunderstandings of ASD to help create a more neurodiverse-friendly culture.


What is ASD and Why Is It Poorly Understood?

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by difficulties with social-communication skills, all-encompassing interests that interfere with daily activities, repetitive behaviors, and trouble tolerating changes in routine. The prevalence of ASD in American school-aged children has mushroomed over the years, from 1 in 69 children in 2012, to 1 in 59 in 2014, to 1 in 44 at present. The increased prevalence, seen globally, is in large part due to greater awareness about the various presentations of ASD, particularly in those who are fully verbal and of at least average intelligence.


Despite a greater media presence for ASD (for example, the Netflix shows Atypical and Love on the Spectrum), there continue to be more misunderstandings than not about ASD among both laypeople and professionals. A theme in these misunderstandings is the tendency to over-generalize about what autistic individuals are like. This is unfortunate, as a lack of understanding could discourage people from seeking an evaluation for ASD, and lead individuals who have found it helpful to identify with a diagnosis to feel invalidated when they do not neatly fit a stereotype of an autistic person.


Although I have not been diagnosed with ASD, I have thought of myself as neurodivergent in the way I think and interact with others. For example, as a teenager, I was highly emotionally sensitive, socially awkward, and obsessively high achieving. There is one memory from that time in my life that stands out and also serves as an example of the perils that come with making assumptions. I was in 10th grade when the Columbine massacre happened in a faraway state, yet in a community that was similar to the one I grew up in. This event, one of the first modern school shootings that caught national attention, led to a slew of reactions that reflected misunderstandings, such as freezing in the hallway whenever a student was spotted wearing a trench coat (the teens who had committed the atrocity were part of a group known as the “Trench Coat Mafia”). It was also known that the perpetrators had been social outcasts, and that is where, in addition to being the same age as the victims, the event was personally meaningful.


Soon after learning of the massacre, I noticed that classmates who previously ignored me suddenly, albeit briefly, paid more attention to me in the hallway. They made apparently kind overtures like asking me how my day was, but the motive, to me, seemed clear given the prevailing myth that came at the heels of that tragedy: Different means dangerous. Neurodivergent people are, in fact, no more likely than neurotypicals to act in aggressive ways. In contrast, they are more likely to be the victims of violence.


I will never know for sure if my own assumption, that others were treating me kindly to prevent some imagined vindictive act of violence, was correct. However, the reason this memory is important is how I responded to it. When asked to write an essay about my reactions to the tragedy, I stressed the need to address mental health problems in youth, and at the same time to discourage myths that kids who are picked on or ostracized are prone to becoming villains. Instead, as I would realize years later, they might become child psychologists.


Clinical Experience and Research Are Essential for Understanding ASD, but They can Also Fuel Over-Generalizations

My clinical experience working with youth on the Autism spectrum has been one of my best teachers. However, even someone who has much experience cannot see more than a small slice of an entire population, so I try to monitor myself for over-generalizations.


The value of research studies is their ability to explore behaviors in larger samples. You can get hundreds of participants to complete rating scales in the same amount of time I would be able to add 1 or 2 clients to my caseload. You can also statistically control for variables that might bias the information you collect, such as age, cognitive ability, the kind of treatment the participants receive, and so on and so forth.


But even research studies need to be taken with a grain of salt. One reason is that they may not have been replicated, meaning that if you run the same study again, you might get different results. Another common mistake is to assume that because 2 factors are found to be related, then one must cause the other. For example, you might find that children who wear a larger shoe size also tend to have larger vocabularies. Of course, this does not mean that foot size causes better vocabulary skills. At play is what is known as a confounding variable, which in this case would be age (older children are more likely to have both larger feet and better vocabulary skills).


Research findings are also vulnerable to misinterpretations, particularly when unleashed to the public in the form of news articles and blog posts. When I teach undergraduate psychology students about the pitfalls of misinterpreting research findings, I talk about one study that found rates of ASD were higher in rainier parts of the country, and how this now outdated study also did not come close to proving that rainfall causes ASD. Other findings in ASD research have been debunked, such as any association between Autism and vaccines.


Also, most psychological research captures trends in the general population. For example, if a research study says a group of people is likely to have trouble performing a specific task, it doesn’t mean that every person in that population has the same difficulty.


The Value of a Diagnosis

The value of a diagnosis is a controversial topic, with some believing that ASD should not be labeled as a disorder, while others have found that the diagnosis has led to greater self-understanding. Regardless of where you stand on this issue, our culture needs to embrace neurodiversity. As things stand now, receiving a diagnosis increases access to educational services and more specialized interventions. At the same time, when it comes to ASD, any attempt to put people in a box is fruitless, hence the well-known saying by Dr. Stephen Shore, “If you’ve met one individual with autism, you’ve met one individual with autism.” In fact, ASD is so varied in its presentation that some refer to ASD as a group of disorders that might emerge in different ways.


Below are a few misunderstandings that stand out in my mind when I reflect on the past 13 years of working with autistic individuals (mostly children, adolescents, and young adults).


Misunderstanding #1: Autistic Individuals Can’t Lie

In my clinical experience, there have been times when a child was diagnosed with ASD, only for that diagnosis to be questioned because the child has a tendency to fib. “But do you really think he is on the spectrum if he lies?”



Where did the idea that autistic individuals can’t lie come from? One reason has to do with their difficulty navigating novel social situations, or in other words, what to say and what not to say. For example, individuals with ASD might be TMI about gastrointestinal problems rather than showing a more socially acceptable level of inhibition. They might reveal their true feelings about the birthday gift grandma bought them to the chagrin of their parents, or share their honest opinions on someone’s style of dress.


While we all have to learn social graces, autistic individuals may have to learn this in a more structured way, just like neurotypical people would learn how to solve a math problem in steps. For example, an intervention known as a Social Story instructs children on steps for following various social skills, including thanking someone for a gift even if it was not what they wanted. In a recent episode of the podcast Hidden Brain, guest psychologist Tessa West Ph.D. was interviewed about her research investigating the inaccuracy people show in interpreting others’ nonverbal social cues. When asked about the implications of this finding for people on the autism spectrum, she commented that individuals on the autism spectrum who have insight into their social skill difficulties might be more deliberate about asking for clarification when social cues are unclear and, through training and practice, might become more proficient at reading cues.


Lying is a broad concept that involves motivational as well as social factors. We lie for all sorts of reasons, including to get out of trouble, lessen anticipated punishment, avoid talking about an uncomfortable subject, get something we want, be kind (as opposed to brutally honest), and maintain the flow of conversation (think of all the times you head nodded aimlessly). In my clinical experience, when autistic individuals lie, it is most often to avoid discussing an uncomfortable subject. If I had a dollar for every less-than-honest “I’m fine” or “don’t know” I have heard, I could retire early.


Misunderstanding #2: Autistic Individuals Lack Creativity and Imagination

Scientist Temple Grandin, comedian Hannah Gadsby, writer Jennifer Cooke-O’Toole, and other creative geniuses who are diagnosed with ASD could easily debunk this misconception. However, I want to go beyond listing these highly accomplished individuals to emphasize that creativity and imagination in the ASD population is not reserved for a few exceptional people.


This misunderstanding persists because clinicians consider trouble with imaginative skills when making a diagnosis. Autistic individuals tend to engage in literal thinking, have trouble thinking flexibly (e.g. going with the flow), and have trouble generating ideas when given an open-ended task like writing an essay. However, creativity is multifaceted, and research has shown that autistic individuals show strengths in what is known as divergent thinking, or the ability to solve problems in unconventional ways. Much still needs to be researched about the differences in how autistic individuals think. For example, their tendency to focus on visual details gives them a potential edge in creative endeavors.


While lack of imagination is a possible symptom of ASD, alone it is not a deal breaker in making the diagnosis. In other words, someone who has great imaginative skills can still meet criteria for ASD if they present with enough alternate symptoms, and a thorough interview reveals that these symptoms emerged during their early childhood.

Imagination is a developmental phenomenon, and developmental trajectories vary among children. The foundation for imagination begins to bud in toddlers when they imitate actions such as sweeping, or mixing with a spoon and bowl. This progresses to actions performed on objects, such as when young children lift a cup to a doll’s mouth or make a dinosaur roar. Later, children have dolls interact with each other and create narratives. During their preschool years, children also start to interact with peers in the context of dramatic play, including dress up, “cops and robbers” and superhero games.


Some autistic children will not show any pretend play throughout their development, but others do, albeit more slowly than their neurotypical peers. Others will master earlier stages within a typical time frame, and stall at other stages. Yet others will appear to fluctuate between imaginative play and more repetitive play schemas, such as moving an object back and forth while humming, lining toys up without acting out scenarios, or repeating dialogue from a television show verbatim. In addition, an autistic person might show more creativity when the topic pertains to a special interest of theirs (space travel, dinosaurs, animals, etc.).


Misunderstanding #3: Autistic People Lack Empathy

Empathy implies a genuine shared feeling with another person. For example, noticing that someone is sad after a break-up might evoke memories of your own past, which in turn triggers empathy for what the person is going through. Empathy requires that you accurately interpret another person’s emotional state and understand what they are feeling.


Empathy is also a developmental phenomenon. By the end of their second month of life, infants typically are able to engage in what is known as social smiling, or smiling in response to a caregiver smiling. While this is not empathy, it is the beginning of shared emotion. True empathy emerges gradually over early childhood. Some people, neurotypical or not, never fully attain it.


In autism assessment, we look for empathy in several ways. Through an interview with a caregiver, we ask for examples of the child being able to offer comfort to others both at present and during the preschool years. This could be as simple as offering someone a blanket when they are feeling sick, looking concerned when another child scrapes their knee and cries, and asking people if they are okay. When evaluating verbal, school-aged children, we have the child tell stories from pictures they are shown and listen for evidence that they can label emotions depicted by the characters. Difficulties on such tasks could bolster evidence for an Autism diagnosis.


However, to say that autistic individuals lack empathy is not entirely accurate. Again, there is a range here, with some individuals developing empathy later. As with imagination, some may master the foundational skills, but struggle with more advanced forms of showing empathy. Some may partially master showing it, such as looking concerned when someone is sad, but not actively offer them comfort. Individuals who struggle with empathy can learn the adaptive behaviors associated with it, such as what to do when someone frowns, cries, or has a fall.


One compelling piece of evidence showing that autistic people are capable of empathy is the high emotional sensitivity to others’ emotions that they sometimes show. I have observed this phenomenon in my clinical work as well as in my personal life interactions with neurodivergent individuals. Consistent with this observation is research showing that neurotypical people who endorsed more autistic traits in themselves were also better at recognizing angry voices.


For example, I have seen clients get upset when I role played expressing negative emotions, even though I made it clear that I was just acting. Also, despite my seasoned ability to hide any indication of emotional discomfort and to refrain from sharing details of a crumby day, on occasion they have asked me whether I was okay or repeated the question, “How is your day going?” more than usual with a look of concern on their face.


These cases illustrate that, in contrast to the belief that autistic people cannot detect emotion in others, some of the individuals on the autism spectrum I have worked with seem to have emotion-detecting superpowers. However, before we get too excited, there is a major caveat to this power. It is that autistic individuals and other neurodivergent people might have more trouble regulating their emotional reactions, including their responses to others’ emotional pain. They might also be more prone to misinterpreting intention, such as thinking that I look off because I am upset with them when I am simply feeling under the weather.


Both ASD and neurotypical people might have trouble with the highest form of empathy, which is the ability to feel what another person is feeling while also keeping your own emotional response at bay. This form of empathy is part of a psychotherapist’s job description. Mental health professionals actively listen to clients talk about trauma and emotional pain. They respond to their clients with compassion and allow them to express emotions. However, therapists are not supposed to show signs of distress, such as crying. This is important in helping the client feel safe with sharing uncomfortable topics in session.


Misunderstanding #4: Autistic People Always Have Poor Eye Contact

Clinicians evaluate the quality of a client’s eye contact during an ASD assessment. They will ask caregivers who knew the client as a young child if they looked directly at their face when interacting with them. One might assume, then, that someone who seems to have good eye contact likely does not have ASD.


But as this post highlights, there is no single tell-all feature of ASD. The diagnosis can’t be narrowed down to one symptom. Therefore, just as poor eye contact alone is insufficient in confirming an ASD diagnosis, good eye contact alone does not disqualify it.

The client might have trained themselves (or been trained by others) to remember to look directly at other people when speaking with them. Even if they have not yet received an ASD diagnosis, neurodivergent people might have received instruction to improve eye contact through other interventions, such as speech therapy or social skills training. Of note is that they might continue to report feeling uncomfortable with direct eye contact.


Evaluating the quality of someone’s eye contact is not always clear cut. Some people might look at you when you first start talking to them, but then look away a lot during a conversation, thereby not sustaining eye contact. They might show atypical eye contact in other ways, such as staring too intensely. Their eye contact might vary based on the context of the situation. For example, they might show good eye contact when you are asking them questions but show poorer eye contact when they are playing with you. Other symptoms of ASD include a lack of variation in facial expressions used to convey various emotional states and not using gestures to accompany their language. People who have these difficulties can come off as stiff and unnatural in social situations even when they have good eye contact, steering the clinician closer to an ASD diagnosis.


Misunderstanding #5: An ASD diagnosis alone will bar you from social privileges granted to neurotypical people, including obtaining a driver’s license and getting into college.

I saved the best for last here. This mistruth strikes fear in parents considering an ASD evaluation for their child. Could it be true that the ASD diagnosis carries such serious consequences? Let’s look at each one:


A. Can an ASD diagnosis prevent you from getting a driver’s license?

Over the years, I have looked into this matter several times, including the other day when I started writing this post. Every search has yielded the same response, that individuals on the autism spectrum are equally eligible as neurotypical people to apply for a driver’s license, granted they meet the requirements.


Note my emphasis on an ASD diagnosis alone. Autistic individuals who also have cognitive and language impairments might not be able to pass the written exam and the road test. Similarly, autistic individuals who also have a sensory impairment such as deafness or blindness will be limited by that sensory impairment. But the ASD label alone has no bearing on one’s ability to obtain a driver’s license.


B. Will an ASD diagnosis prevent my child from getting into college?

An ASD diagnosis in and of itself will not prevent a student from college admission. College admission boards do not see whether their applicants have had an Individualized Education Plan or IEP (a document created by the child’s school district that explains their special education services and often includes special alerts about the child’s diagnoses). College admissions review the student’s transcript, which includes their grades and the courses they took. The IEP information is not included in this.


Some colleges, in fact, have scholarships specially reserved for autistic students:


In my opinion, ASD is more likely to interfere with academic achievement and college adjustment if it goes unacknowledged, as it might limit people from seeking and obtaining academic support and accommodations. Once the student has matriculated at a college or university, they may seek academic accommodations through the college’s Office of Disabilities. Most colleges have such an office, including prestigious ones (https://aeo.fas.harvard.edu/).


Conclusion

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder that continues to prompt more questions than answers. We still do not know what causes ASD, and while we have excellent interventions to support autistic individuals, we do not have a cure. However, there is abundant evidence to suggest that we should question the assumptions that tend to be made about autistic people.


Regardless of whether people choose to confirm an ASD diagnosis through a comprehensive evaluation, and whether they accept the diagnosis once it is confirmed, there is a need to continue the cultural shift that is not only more accepting but also more understanding of and accommodating to neurodiversity.



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