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life with asperger's

Category: Myths

Asperger’s is Not a Mental Disorder

Asperger’s is not a mental disorder. You’ll find our diagnosis called one frequently in the popular press. Although the autism spectrum is a diagnosis in the DSM-5, which is a “diagnostic and statistical manual for mental disorders,” to be accurate, we should refer to Asperger’s as a “neurodevelopmental condition.”

I’ll begin by unpacking why I prefer “condition” as the second term in this descriptor for Asperger’s.

First, I use the term “condition” because, as many of us and our allies have pointed out, Asperger’s embodies a developmental difference that can bring with it gifts (such as a fine eye for detail, a tendency to think outside the box, and a predisposition to rational decision making) as well as just plain divergence in our experience of both the social and physical worlds. Second, I use the term “condition” because the term connotes that perhaps it’s not entirely positive. Many of us and our allies have pointed this out as well: that to suggest Asperger’s in particular, or autism in general, are entirely positive or neutral experiences is to downplay the challenges of living with it, which for most of us is a reality and for some of us can be so profound that we require disability assistance or are driven to imagine an early way out.

Now, I’ll unpack why I prefer “neurodevelopmental” over “mental” as the first term in this descriptor for Asperger’s. When Asperger’s is referred to as a “mental” disorder, the focus is on an experience entirely in our heads, whether cognitive or affective. The reality is that autism in general, and Asperger’s in particular, is also very much an embodied experience.

In neurodevelopmental conditions, the brain and/or central nervous system diverges from a neurotypical standard of normative development. This impacts many aspects of embodiment that go beyond Asperger’s defining characteristics, such as “qualitative impairment in social interaction” (DSM-4); “restricted repetitive and stereotyped patterns of behavior, interests, and activities” (DSM-4); limited cognitive empathy and theory of mind; and weak executive functioning and central coherence. Several mental and mood disorders commonly co-occur with Asperger’s, including obsessive-compulsive disorder, generalized and social anxiety, and depression, but these are likely to have been responses to the condition rather than causes of it. The only defining trait of Asperger’s that is often associated with physical experience is sensory sensitivity, but since that often understood as (merely) perceptual, this is often implicitly taken as more of a mental than a physical concern.

Although autism research continues to search for definitive biomarkers and genetic signatures that can serve as physical indicators for autism, the field has found many physical conditions that correlate with embodiment on the spectrum. In enumerating these, I hope to give a sense of what living in an autistic body means. Not all autistics share all of these physical conditions, but these are experienced by many of us with greater frequency and with increased co-occurrence than in neurotypical populations. Except for seizures (which I have not had), and leaky gut (which I could not confirm either way), I have all of the physical conditions listed below.

  • Sensory Processing Disorder (including Auditory Processing Disorder): The brain has difficulty processing the sensory information it receives. In Auditory Processing Disorder, for example, someone may seem to have normal hearing in quiet environments but has difficulty filtering out speech or desired noises from background noise, poor memory for anything heard, and may have difficulty distinguishing between near sounds. — At school and work, I compensate for APD by always taking notes.
  • Hyper- and hypo-stimulation: Increased and decreased sensory response to stimuli (such as insensitivity to cold but increased response to heat, chemical smells, tactile sensations, or certain sounds).
  • Heightened perception: The ability to perceive better or more than is typical, such as through “super vision.” — For me, this is, unfortunately, a heightened sense of smell.
  • Slower pupil response: The pupil contracts more slowly than is typical to flashes of light. — For me, this made night driving almost impossible.
  • Larger pupil size: The last time the optometrist went to use eye drops to dilate my pupils, he remarked that he didn’t know why he bothered: My pupils are so large, they seem naturally, permanently dilated. I generally have sensitivity to light and prefer dim spaces.
  • Faster heart rate
  • Apraxia of speech: Difficulty in producing speech in the way that it is thought or planned. — I have high verbal ability but also this (which causes me to think one word and say another). I have much greater difficulty with speaking than writing in this respect.
  • Autoimmune disorders, including a higher prevalence in our families (e.g., asthma, eczema, allergies including food allergies, thyroiditis, arthritis), sometimes paired with endocrine dysregulation. — For me, this is a form of hypothyroidism: Hashimoto’s Syndrome.
  • Obesity
  • Irritable bowel syndrome
  • Leaky gut: When the intestines are “too permeable” and “leak their contents into the bloodstream.”
  • Low muscle tone and core muscle weakness (aka hypotonia, leading to trunk instability)
  • Joint hypermobility (particularly among women on the spectrum, perhaps because of estrogen levels)
  • Poor sensorimotor integration
  • Dyspraxia: A deficit in gross (clumsiness, altered gate, poor coordination and balance) and fine motor skills (e.g., handwriting difficulty).
  • Insomnia and other sleep disorders: We take an average of 11 minutes longer to fall asleep and more of us have seriously disordered sleep.
  • Seizures
  • Stimming (i.e., self-stimulation, a repetitive physical movement or vocalization that is relaxing / pleasurable, used to relieve stress and increase inward focus), with the “dark side” of stimming being self-injury (this can be as mild as excoriation). In the research, often associated with our “restricted repetitive and stereotyped patterns of behavior,” and so we come full circle to find that one of our “mental” traits is indeed linked to the physicality of our condition.

 

 

 

 

 

 

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7 Things the Media Gets Wrong on Asperger’s

Media coverage of Asperger’s sometimes gets it wrong. Here’s what:

Asperger’s is a “mental illness.” Just no. Asperger’s is a developmental difference that can lead to certain disabilities. When a commentator chooses to define us by our disability, we get labeled with a “neurological disorder,” which is still not quite the same as a mental illness. Our brains have developed differently, and some of those differences may present a challenge, but these differences are not necessarily dysfunctional and they are not the result of disease. That said, there is no shame in mental illness, and Aspies can exhibit cognitive and behavioral differences that respond to psychological and psychiatric treatments.

Asperger’s can be “overcome” or “cured.” Also no. Aspies can learn to compensate for deficits or challenges due to their developmental difference, but it is a lifelong difference. Recently, John Elder Robison’s account (Look Me in the Eye) of having participated in a neurological experiment (transcranial magnetic stimulation) that improved his cognitive empathy is making the rounds (the new book is Switched On). He claims to have had the experience, however temporarily, of being to feel and perceive things he was unable to feel and perceive before. He doesn’t claim a cure himself–just a transformation that is, so far as we know, unique to him, but others writing about the book have made the claim. To my view, the jury is still out on whether the experience will generalize to our population. And, even if that were possible, there are many within our community who wouldn’t choose to change who they are at such a fundamental level.

Aspies don’t mind doing “boring” and “repetitive tasks.” Got something tedious? Hire an Aspie. Just no. Aspies are keen on identifying, tracing, and completing patterns. We are systems thinkers. Does that mean we are able to tolerate boredom better than others? In fact, we tolerate boredom less well (one of our defining traits is a passionate devotion to “special interests”), but what bores you may not be the same as what bores us.

Aspies are “good with numbers and technology.” Many efforts to hire Aspies into the workforce currently focus on IT positions. This might work for some Aspies, but will it work for all of us?  Still no. Some Aspies are good with numbers and some are good with tech. However, one of the defining traits of Aspies is highly differentiated areas of ability and the areas of ability may differ. There are some Aspies who are actually more verbally than mathematically gifted, and one study has found that we have higher abilities than normal in “fluid problem-solving” (aka “abstract reasoning ability”).

Aspies “cannot tell a lie.” Just no. Aspies can learn to lie just like any other human being, especially in order to avoid getting into trouble. Most of us strongly prefer not to lie, and to our own disadvantage resist lying even in small ways, for reasons we don’t fully understand. We even have a tendency to share disadvantageous truths about ourselves or anything. I believe we tend to be straight shooters and rule followers because the system of social reality is set up that way, and we follow systems, preferring predictability, order, and even perfection. We also tend to be bad liars and we dislike having to conform to the social norms and expectations that would induce someone to lie to begin with.

Aspies are disproportionately mass murderers. Definitely no. Aspies don’t tend toward violence any more than other human beings. If you counted up all the mass murders historically or presently, most of them would not be Aspies. However, because we have the antisocial loner as a popular figure (not all Aspies are antisocial loners) for mass murderers (especially school shooters), the media has come to associate Asperger’s with these tragedies, even speculating on whether a shooter was thought to have or might have had Asperger’s. Even in cases where a shooter is a confirmed Aspie, at least one expert analysis claims that it is compounding psychopathology and not developmental difference alone that is probably an underlying cause in most cases. Perpetuating this association and speculating on it as a cause of violence is irresponsible. (Click here for a good opinion piece on this topic by Andrew Solomon.)

Aspies “lack empathy.” Finally, no. When people say that Aspies lack empathy, what they usually mean is that we are unable to feel for others. However, studies have shown that Aspies have a normal or even pronounced ability to feel for others. Many in our community feel especially close to animals. Aspies have a deficit not in affective empathy but in cognitive empathy. That is, we have difficulty imagining what others are thinking or feeling. We have weak “theory of mind.” Couple our weak theory of mind with a tendency to just say whatever we are thinking without social filters or to not do what is expected around a social occasion or as a social response to another’s expression of feeling, and we can seem insensitive, odd, or cold. However, once an Aspie is aware of what someone else is feeling and is able to understand why he or she is feeling that way, empathy is as likely to follow as it is for anyone not on the spectrum.