Aspergers is me, not a very scientific explanation but still one that is valid. On this page I will explain Aspergers in three different ways; as a system of differences used for diagnosis (medical model), as a neurological difference (neurodiversity model) and what it means from a lived experience point of view.
Medical model of Aspergers
This model uses either the ICD10 or the DSM-IV, which set out criteria that must be observed in a person for that person to be said to have Aspergers. The upcoming DSM-V has removed Aspergers from the diagnostic manual. Instead it becomes an indistinguishable part of the autistic spectrum.
Diagnostic Criteria for 299.80 Asperger’s Disorder – The following is from Diagnostic and Statistical Manual of Mental Disorders: DSM IV
(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
(A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(B) failure to develop peer relationships appropriate to developmental level
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(D) lack of social or emotional reciprocity
(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(D) persistent preoccupation with parts of objects
(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)
(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.
(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.”
The difficulty with the medical model, apart from its deficit focus is that many adults hide the difficulties that they experience and avoid situations which would provide evidence of their significant impairments. For example many Aspies can hold down well paid, full time jobs, having gained university degrees, but may be unable to interact socially with their work colleagues without it affecting their well being. To hide this, they avoid socialising.
Neurodiversity Model of Aspergers
The US National Institutes of Health (http://www.ninds.nih.gov) suggest that “using advanced brain imaging techniques, scientists have revealed structural and functional differences in specific regions of the brains of children who have Asperger syndrome versus those who do not have the disorder. These differences may be caused by the abnormal migration of embryonic cells during fetal development that affects brain structure and “wiring” in early childhood and then goes on to affect the neural circuits that control thought and behaviour.”
Aspergers, autism and PDD-NOS are neurological differences from typical brains and the resulting different development of the brain, causes difficulty with behavior, communication, learning, and social interaction.
There is a lot of research currently (Google brain scans or brain difference and Aspergers) about the neurological differences between neurotypical people and those with Aspergers or autism. Although vaguely useful in that it confirms a life long state of being, it does not advance understanding of what it means or feels like to experience life on the autistic spectrum.
Lived Experience Model
For me growing up as an undiagnosed Aspie, I was diagnosed last year, life was about being outside of the norm, a bit different from others. I was the proverbial nerd or geek, a bright girl who sat and the back and got really good exam results. Except, if I didn’t understand a concept right away, I often never get it. I have exceptional focus for things I am interested in and appalling focus for things I am not. I have had to learn social rules and etiquette. I believe in and use politeness, but it is a rule and I get offended when others are not polite. I can’t read other people’s intentions. I was in trouble at lot at school because I would not do what I was told unless I could see the point to do so. I was hyperlexic (as are many Aspie girls) and taught myself to read by age 3. I preferred adults or older/younger children to my peers. I usually only had one or two friends. As a teenager, I was quite clearly odd, different to my peers. I had zero dress sense, no understanding of fashion, hated make up and misunderstood and applied large numbers of social rules. I love learning, but hated the intensely social world of university. I prefer one to one interactions, or giving a lecture or presentation, but I hate the morning tea socialising. I have sensory sensitivities that limit what I eat, wear, touch, and affect my comfort and emotions at all times. For example wool itches me, so I won’t touch it, let alone wear it. For me the tv is usually on do quietly that my partner can’t hear it, but when it gets turned up to ‘normal’ volume, it sounds so loud. Lights of the wrong toe feel like they burn my eyeballs. I have a long term partner, a job, am finishing my PhD, raised a step child , have pets, hobbies. To outsiders I look and sound ‘normal’, but Aspergers affects what I do, when I do it and how I do it. I have very poor facial recognition, learning who people are by their hairstyles. Every time a colleague gets her hairstyle changed I have to relearn who she is. When overloaded I need to take time to calm or my mental and physical health can be affected. If I chose well, I can live a great life, full of healthy possibilities. Many aspies are not open about their Aspergers fearing others will suddenly perceive them as less able. Sadly, this does happen. However, I chose to be open so that children with Aspergers can have yet one more role model, so they can see their own potential and aim achieve both that potential and a happiness and acceptance of themselves and their value in society.