Autism research and our shared knowledge about autism have come a long way. However, while great advances have been made, there is still a long way to go. The actual way we think about autism needs a drastic overhaul.
Autism was once categorized as a mental illness that had its roots in early childhood trauma or poor parenting. We now know that it is a genetic neurodevelopmental difference. Most knowledgeable autism experts and researchers are steering away from using words like “disorder” or “illness” to describe autism. They also tend to use words like “traits” or “characteristics” instead of “symptoms” or “signs” of autism.
Historically, though, our understanding of autism has been based on a deficit model. The deficit model continues to be the prevailing one. In other words, most of our understanding of autism is rooted in the negative aspects of the condition, the apparent difficulties, problems, and symptoms that come along with being autistic.
This deficit model is based on a non-autistic (aka, neurotypical) understanding of what it looks like on the surface to be autistic. And, more importantly, this deficit model of autism is based on a neurotypical concept of what is normal and acceptable in the areas of communication, behaviour, social interaction, and responses to sensory input.
Diagnosis of autism is made based on two main categories of outward observations (pay attention to all the negative words, like “deficiency” and “lack” and “restricted”):
- Deficits in social communication, manifested by:
- Deficiency in back-and-forth conversation,
- Less social interaction and absence of interest in peers,
- Abnormal eye contact (too little or too much),
- Strange gestures, and/or
- Deficits in developing and/or maintaining friendships and other relationships.
- Behaviours or interests that are repetitive or restricted, manifested by:
- Repetitive movements or repetitive speech (e.g., saying the same word or phrase over and over, humming the same tune repeatedly),
- Having inflexible routines or distress in response to change,
- Restricted interests that are abnormal in intensity or focus, and/or
- Hyper- or hypo-reactivity to sensory input (i.e., either indifferent to sensory input like pain or temperature or overly responsive to sensory input like bright light and noisy environments).
As an autistic person, I can tell you that I do not experience the way I communicate socially as a deficit or lack. Other people have made me feel ashamed for my quirks and social differences (many of which I mask — more on that later!), yes, but in a roomful of only autistic people my way of being is not odd or wrong at all. The neurotypicals are the ones who would appear quirky or odd in a roomful of autistic people.
My way of being and communicating socially is odd, problematic, or deficient only from a neurotypical standpoint.
For example, my own back-and-forth conversation might appear “deficient” or “impaired” because I usually display more and longer pauses in conversation than neurotypicals are used to. This is due to the fact that my brain takes more in — cognitively and sensorily — than a neurotypical brain, meaning that my brain has to work harder to sort, filter, and analyze the incoming information. What looks like gaps and oddness to you is just me processing and formulating a response.
Also, I usually won’t say anything unless saying something has a clear purpose at that moment (to share important information, ask an important question, make someone laugh [definitely important!], etc.). From a neurotypical perspective, this might look like something is wrong with me. I’m “too shy” or “stupid” or “aloof” or any number of negative assessments.
There are other autistic people who, in the same scenario, might talk “too much” and for various reasons. It could be an anxious or fight-or-flight type response to the flood of cognitive and sensory information coming in. This FLOOD of information can be literally agonizing, especially if we are stressed or already overwhelmed in some way. For some of us, talking or vocalizing in any way can be soothing.
Another example in response to the diagnostic criteria above: I have less social interaction compared to the average neurotypical, yes, mostly because social interaction — especially in large groups or in new (or loud!) settings — is very draining for me. I need a lot more time to recharge and be alone.
But my experience of the level of my social interaction is that it is just right. In other words, I don’t feel that I require more social interaction, and I am actually deeply interested in my peers. It’s why many of us are interested in psychology and often pursue psychology as a special interest or career choice (more on that later!).
I may not look you in the eye as much as you’re used to, because for whatever reason direct eye contact FEELS very intense and can even be painful sometimes. I can hold your gaze and I can do it well, but it’s because I have been taught that this is what is expected of me in social contexts. But the neurotypical demand for and expectation of near-constant eye contact feels abnormal and strange to me!
From an autistic perspective, the neurotypical world is the deficient one, the odd one, the one that is pathological and makes very little sense. It’s too noisy, too rigid, too set on conformity, too bright, glaring, and disconnected.
It is easy for me to turn the DSM-5’s diagnostic criteria into a list of benefits, strengths, gifts, and unique qualities:
- Strengths in social communication, manifested by:
- Deep conversation as opposed to small talk,
- More meaningful but fewer social interactions,
- Purposeful eye contact only when necessary,
- Unique gestures that help relieve tension and stress,
- Intense social interactions and strong bonds with a select few, and/or
- Deep interest in others that often takes the form of involvement in social issues, psychology, sociology, and so on.
- Ability to maintain strong focus and feel very deeply, manifested by:
- Being able to study or focus on one subject or issue for long periods of time,
- An adaptive ability to keep strict schedules, allowing for a sense of calm and control in a busy world filled with pressures and expectations, and/or
- Being intensely connected to everything around them so that everything is more overwhelming, but also more beautiful (Note: some autistic folks experience some sensory stimuli less intensely, but they almost always have some kind of hyper-reactivity to some kinds of stimuli; they may not be sensitive at all to cold, for example, but they will be unable to socialize in a crowded room).