Update (6/10/14) A Note to Readers: Why All the Strikethrough Text?
In the last several months, my understanding of neurodiversity has broadened. As I attempt to move away from the illness and pathology paradigm, I have edited the language to better reflect this. I have left the original text in, but in some cases have marked it up with the <strikethrough> tag to accurately reflect my state of mind when I originally wrote this page.
To reflect my new understanding, I use the terms neurodivergent and neurodiverse to collectively refer to folks with alternate kinds of neurology (autism, ADHD/scout-minded, bipolar, dyslexic, synesthetes, and so forth). Also I chose to refer to myself as autistic and will use the word autistic to refer to folks anywhere on the spectrum.
What About Asperger’s?
Debate continues over the terms “Aspergian”, Asperger’s, and “Aspie”. This piece of writing by Michael Scott Monje, Jr. on the We Are Like Your Child blog is one of the things which influenced my decision to use the term autistic for myself. I have grown up in a life of some degree of privilege because of being a lighter-skinned multiracial woman (if you want to know more about the evils of colorism, check out the Interracial Colorism Project, these articles or the documentary “Dark Girls”) and being able to pass as heterosexual and cis-gendered. However, I have experienced prejudice in discrimination in other ways.
I want to help eliminate the schisms between groups of autistic people, as well as help parents of autistic people understand our realities. I believe that by using the term “Aspie” too much, I could be helping promote the idea of a divide between groups of autistic people, promote functioning labels (which are useless), and cause people to look down on those who are non-verbal, who have greater sensory challenges, and so forth. In my eyes, no matter how our autistic neurology manifests, we are all just that — autistic.
What’s Culture Got to Do With It?
Below, in my original understanding of what was called Asperger’s, I included the typical diagnostic elements and characteristics for which medical and mental health professionals observe in whom they evaluated for Asperger’s. Desiring to reframe autism in a way that rejects the pathology/illness paradigm, I encourage readers to read my post “The Empathy Question, Revisited“, before continuing. I now suggest that the view of our autistic characteristics as problematic or disordered is a cross-cultural problem, not a medical problem. Things such as lack of eye contact and single-mindedness have for too long been viewed pejoratively in a negatively light.
What follows is my original writing, with modifications.
An Introduction to Asperger Syndrome
Asperger Syndrome is currently understood to be a neurological
and development disorder condition difference that is part of the autism spectrum. However, as more Aspies share our realities and collectively define what AS and autism mean, an answer emerges to the question of whether AS and other kinds of autism spectrum conditions are disorders or natural variations of human neurology becomes more appropriate.
What follows is partially an explanation of
the current an understanding of Asperger’s which is emerging, morphing, and changing as new information becomes available and autistic people define their own realities. I strongly recommend reading the neurodiversity page after finishing this page.
According to Dr. Tony Attwood, Asperger Syndrome was first described in 1944 by Dr. Hans Asperger, an Austrian pediatrician. He had observed some of his patients — intelligent young children who displayed certain characteristics, such as impaired social interaction and narrow, sometimes obsessive interests. He named it
the condition Asperger Syndrome, after himself; however, AS was not recognized by the American Psychological Association until 1994, when it was included as a diagnosis in the Diagnostic and Statistical Manual of Mental Disorders, 4th edition. Asperger Syndrome is a collection of traits and patterns of behavior. While it is considered an autism spectrum disorder, it differs from classic (or Kanner’s) autism. People with AS usually do not suffer delays in language (unlike classic autism, in which the child may not speak until age three or later); People who describe themselves as Aspergian, like other autistics, are bright, often articulate individuals with varying degrees of personality, humor, and desire for social interaction. However, the boys that Dr. Asperger observed in his research that those with AS tended to have difficulties in a few major areas:
- Social Interaction: this includes things such as trouble with making and maintaining eye contact; difficulty with reading social cues and working out the intentions of others; difficulty with small talk.
- Sensory issues: this could include oversensitivity in one channel of input (visual, auditory, olfactory); being overwhelmed easily by too much stimuli (which can cause panic attacks and temper tantrums); and sensitivity to certain kinds of stimuli (may hate florescent lights, overly strong smells, scratchy clothes)
- Communication: while there is no obvious speech delay, the AS person may nonetheless have trouble in the areas of speech and communication. This could include: difficulty with non-verbal communication, such as reading body language, facial expression and tone; echolalia (the tendency to repeat what is just said to them); difficulty in naming and communicating feelings (which, if combined with low frustration tolerance, can lead to panic attacks or temper outbursts); and a tendency to be very blunt in truth-telling, which could sound insulting, even if not intended. It should be noted that these difficulties can occur, despite the lack of speech delay; in some cases, children with AS can have vocabularies beyond their age or grade level.
- Imagination: there are a collection of behaviors loosely associated with this area. This could mean difficulty with literal use of imagination (which leads to things such as difficulty in understanding figures of speech, as well as a tendency to take what is said literally) or it could refer to broader behaviors, such as: single-mindedness; being engaged in a task for hours at a time; rigid likes or dislikes (which can be related to sensory issues, depending on what the likes or dislikes are); repetitive routines or rituals; and limited interests (or a narrow, obsessive focus on a few subjects)
Women With Asperger Syndrome
While these are generally characteristics, what are we to say of women with AS? While we may display some or many of the above characteristics, we have been overlooked in the discussions on Asperger Syndrome and autism
spectrum disorders until recently. Dr. Tony Attwood suggests that women and girls on the spectrum have a tendency to attempt to fit in social by observing the accepted behaviors of their group or culture, and then imitating them. A great example of this appears in “Aspie in the City”, an article published by Psychology Today in November 2006, which profiles a young woman, Kiriana Cowansage, diagnosed with AS at age 19:
Kiriana’s…strategy amounts to remembering and rehearsing scripts. When she walks into a clothing shop, for example, she pulls up a mental dialogue box: “No thanks, I’m just looking,” is what one should say if a saleswoman offers help. But as Attwood points out, such playacting is not intuitive, and is therefore exhausting.
Thus, we may tend not to stand out for odd behavior, unlike our male peers. This happens in varying degrees; not all of us are so good at “playacting” and may suffer in various arenas, such as socially, at school, and in the workplace. But some of us become really skilled at “pretending to be normal”, as author and Aspie Liane Holliday Willey so puts it in her book by the same title. This is why we might miss notice, and not be diagnosed in such high numbers. Also, as women we may more readily display emotions than our male counterparts — another reason why we might be misdiagnosed or undiagnosed. Remember, for a good percentage of the history of autism
and AS, only males have been studied, and it has been assumed by both professionals in the medical and mental heath fields and the general public that only males could be on the spectrum. Hence Johnny gets taken to the doctor, whereas Suzy may not. Neither may Keisha, for that matter, as I find that autism spectrum disorders may be even less understood in non-white communities.
I am not suggesting that inherent discrimination or prejudice in the system is affecting the ability of women and non-whites to receive diagnosis and adequate treatment, although this may happen in some cases. Also, socioeconomic factors may be at work as well, which includes access to mental health care and resources. However, I am suggesting that a misunderstanding about and stereotypes pertaining to autism
spectrum conditions — including Asperger Syndrome — may be affecting how women and girls are diagnosed. Additionally, the public perception that these conditions only affect white males may affect how many non-whites are diagnosed and are able to obtain access to helpful resources. Stereotypes and misinformation may cause the formation of limited mental schemas: in other words, if you don’t think it’s a possibility, you won’t even explore it.
One of the chief ways to help clear up these misunderstandings and erroneous mental schemas is education and awareness raising. This is part of what Woman With Asperger’s is about. I know that I went for 33 years undiagnosed, and
I’m sure there I know for a fact that are women out there who are just like me. We struggle through life, knowing that something is different about us isn’t quite right while we pretend to be normal the whole time. Finding out that I have Asperger’s was a literal godsend: it has helped me understand and explain a lot of my difficulties, as well as my strengths, and why I have done certain things and have undergone certain events in my life.
I believe that there is no “fixing” Asperger’s, and many of us may not feel that it is a “thing” to be fixed. However, greater understanding can help us gain access to resources and learn coping strategies that will help us live our lives to a greater, more satisfying extent.