From: "Ellen McLaughlin" To: Subject: Aspergers part 1 (was RE: Temple Grandin) Date: Wed, 23 Feb 2005 14:14:54 -0500 Mr Thomas wrote: > > One can apprehend the mental state of another without feeling > the least bit of sympathy for him or her. This seems > evidence enough that apprehension of an emotional state is > not sympathy but knowledge All right, time to out myself here. In my soon-to-be-ex's extended family are probably 8 or 10 people who could be diagnosed with Asperger Syndrome, which is what Grandin has. Several of them do have the official diagnosis, including my STBX, a nephew, and others who are close to me. In addition, I've worked most of my life in software, which attracts a high rate of AS. In trying to deal with this poorly understood and frustrating disorder, I've spent a good deal of the past five years reading about it, conferring with the experts, attending conferences, and attending a spouse support group. In addition, a close friend works with Aspergers children and (perhaps coincidentally, perhaps not) has several in both her biological and in-law families. Asperger's Syndrome has been written about in the mass media a number of times in the past several years, but it's still not that well-known. I know there's some understanding on this list because of some jokes that have been made, as well as one or two people who have tentatively self-identified or talked about family members. Remember the link Ms Baumgarten forwarded for a fellow who advertised on the internet for a partner to provide sexual companionship and a child? Classic severe Asperger, I thought at the time. Instinctively we find his proposal creepy, but in reading it I felt he was actually quite well-intentioned by his lights, simply clueless. He didn't come across as someone trying to manipulate a woman into a dangerous situation; indeed he probably couldn't figure out how to "manipulate" to save his life. He had already learned that he couldn't get a partner through the usual social dance of innuendo, attraction, and negotiation, and so (being highly intelligent) he simply set out to make a straightforward proposition to the world, figuring *someone* out there would have complementary needs. Who knows, maybe he found someone. Anyway, I thought at that time of writing to the list, but didn't. Asperger's is considered to be on the "autistic spectrum," which makes sense because there is some overlap in symptoms and early diagnosis, and a fairly high coincidence between AS and autism within families. I personally know several families (not through the AS groups, simply know them) in which one parent is a bit "odd" and there is a flagrantly autistic child. There are also diagnoses of high-functioning autism and various pervasive developmental disorders which are in the same general grouping, without consensus on how exactly they differ (if they do), but I won't get into that. I'll just say that, by definition, Aspies have normal to high IQ but experience significant difficulties in other areas, including understanding and relating to other people (especially non-verbal cues), understanding and expressing their own emotions, planning/organization, verbalization, initiative, perception of time, and sensory disorders. "Pervasive" is a significant word in the world of PDD's -- more than one part of cognition is affected, with multiple effects. The degree to which these problems are present varies from person to person, and to some extent may vary over time (e.g., Grandin's description of herself as exhibiting autistic-like withdrawal and outbursts as a child, which gradually became better over time and with more insight). A person with severe autism has a significantly impaired IQ and also withdraws from interaction with people and essentially treats them as objects. There is evidence that this latter is caused by some combination of sensory overload -- the world is too loud, too bright, too busy, too textured -- and specific neural deficits with regard to human interaction. We know that babies are hard-wired to see face patterns (eyes-mouth) and to enjoy face-to-face interaction -- even most autistic children show some of this in the first year or so -- and it's reasonable to assume there are other specific neural mechanisms that enable us to readily comprehend and convey social information. People with Asperger's have the same deficits as autistics, apart from the verbal and mathematical ability measured by IQ, but to a lesser degree. Because they are high-enough functioning to appear "smart" in many arenas, it's also easier to see there are areas -- aside from social problems -- where their performance falls far short of reasonable expectations. Planning, organization, and perception of time, for example, are significantly problematic. They tend to be either catastrophically disorganized (at least in some areas) or wildly over-structured, probably in compensation. They have trouble jumping between details & the big picture; they can't figure out how to break down a task into manageable components; they are often unable to estimate time or set up a workable schedule; they may spend hours creating to-do lists but never actually accomplish a single one of the items. They lack "common sense," both for pragmatic reasons -- they don't pick up the right details and register their significance, and they don't always learn through experience; and for social reasons -- they don't absorb cultural information about the "right way" to handle problems that might arise. There is also a tendency to be literal -- sometimes extremely so -- which can cause problems with humor, with hints or implications, with metaphorical language, and with rules. Many people with AS are quite rule-bound and will not, for example, either bend a traffic law or allow others to do so without objection. Most people with Asperger's are employable -- some highly so -- but may require sympathetic allowance or specific accommodations made, along the lines of an IEP in the public schools. They are likely to run into significant problems at school or work and have erratic job histories, although, with coaching, they can usually manage to meet standards. The people in my ex's family would, for the most part, not strike someone on meeting them as "strange," but perhaps a bit shy, a bit corny, sometimes a bit immature. Seen closely or over a period of decades, however, it's clear that some unusual things are going on. One relative, for example, runs his own highly successful business, but has incredible staff turnover because he continually offends his employees. Emotional intelligence is unambiguously a form of intelligence, different from sympathy, different from intentionality. One only has to watch a well-meaning person with Asperger's struggle to see that this is so. They wish to be liked, to fit in, but they lack the ability of the normal person to "read" the social environment and respond in kind. Instead, they have to do the processing on a conscious level, which to some extent can be taught and learned, but it is completely exhausting. Combined with an innately lower desire for companionship and a much lower threshhold for sensory input, this means they tend to spend quite a bit of time alone, either recuperating from overload, licking their social wounds, or pursuing their own interests. This is surely based at the neurological level, as brain scans and experiments are starting to show. I've read some fascinating studies on eye contact, for example. It seems that all mammals (and probably all vertebrates) are hard-wired to assess the gaze of another animal. Although the difference in angles is quite small, we have no trouble knowing whether someone across the room is staring at us, or over our shoulder. We know to watch the eyes of a stranger to pick up danger signals. Dogs and cats get into many of their wrangles because they have different body language, including eyes and tails. Well, autistics and Aspies don't have the same understanding or use the same mechanisms to read others. They tend not to watch eyes and not give signals through eye contact; most of us have met the classic "geek" who looks everywhere except directly at us. I saw a fascinating and hilarious presentation of a study tracking eye movements of people viewing "Who's Afraid of Virginia Woolf?" NT's (neuro-typicals) will, of course, closely watch the faces of the couples as they quarrel, especially the eyes, looking carefully at the speaker with quick glances at the listeners to see how they're reacting to the blistering revelations. People with AS will tend to watch the moving *mouths*, trying to get clues to emotion and intention. They will also let their gaze wander away from the people and toward any other moving object or item that particularly interests them, so that a much higher percentage of their attention is directed toward irrelevancies such as someone smoking or walking past in the background or (in one case) staring intently at the doorknobs! It appears that eyes, which to most of us are so very revealing, convey little or nothing to people with Aspergers. There is also a deficit sometimes termed "mind-blindness" in which the patient has trouble grasping the state of mind of another. A famous experiment conceals an object in the presence of a 3rd party, who then leaves the room after which the object is moved. When the 3rd party returns, the subject is asked, "Where will she look for the X?" NT children will get this right around the age of 4 or 5 -- they know that she knew only the FIRST hiding place and will look there. Autistic and Asperger children learn this much later and more imperfectly; because they know the truth themselves, they assume everyone else does as well. I can attest to this first-hand, having often been left in the dark by my ex- who assumed that I had access to all the same information he did without being told. They don't remember that the other person has a separate perspective and what it might contain. There is both a handicap and a side-benefit from this, in that people with AS tend to be exceptionally truthful and loyal. Because they cannot easily figure out how to manipulate another, they rarely want or try to. This means, of course, they can easily be deceived and hurt themselves. In addition to the kind of relatively clearcut facial and social understanding that is subject to experimental testing, I see also a deeper deficiency -- which I believe is primary and more fundamental than not getting the right signals and being in overload -- in the way people with Aspergers relate to others. On the one hand, they tend to have a strong sense of social justice and to defend the underdog; but they will show serious deficits in other forms of empathy. They do not grasp how hurtful unadorned truth can be; they will not turn to others for advice or to vent; they won't remember to communicate information (either the other person "should know" or is assumed to be unaffected); they won't ask for or offer practical help; they don't monitor general conversation and are surprised that others expect them to have been listening; they allow weeks/months/years to pass in a relationship yet assume it is unchanged. They turn John Donne on his head -- *every* man is an island, and landing rights are rarely granted. People with AS usually specialize early and strongly and hyperfocus on the things that interest them. In early childhood they often become "walking encyclopedias" on some offbeat topic -- transit schedules, dinosaurs, etymology, brands of vaccuum cleaner -- and as adults, they can turn such interests into highly successful careers if they overcome the other problems of social interaction and organization. I've often heard therapists refer to these engrossing interests as obsessions, but technically they are not, as I was reminded when an Aspie (whom I had known for many years through working with him in software) took the microphone to say, "An obsession is by definition something that makes the patient unhappy and which he'd rather get rid of, but *we don't want to* get rid of ours. They are INTERESTS, not obsessions." So they are, although to the suffering family member hearing for the 34th time about a particular scene in the Three Stooges, the distinction can feel moot. Aspergers Syndrome is often co-morbid with other diagnoses including certain LD's, ADD, depression, and anxiety. I believe, based on personal experience, that the depression and anxiety (especially as the latter shades into sensory issues) are often primary issues with AS, but are also made worse as secondary issues by uneven and unhappy experience. It would make anyone anxious, I think, to continually be on the defensive against unpleasant surprises and to come to doubt their own perceptions and ability to manage. There is a good deal of individual variation in Aspergers, partly the usual variation in temperament and abilities, partly the result of differently adapting to limitations. The problems with organization and detail/big picture are universal, but as I said, some live with chaos while others set up deliberate structures to cope. Planning similarly produces a lot of anxiety, but while 75% of them schedule things weeks in advance and have trouble with flexibility, I've also met individuals who refused to plan *at all* and would make no decision until all other data points were available (by which time it's usually too late). The great majority tend to be anxious and self-doubting, but a few simply say, "I really don't give a s--t" and happily go off with their own interests. Most are extremely (excessively) rule-abiding and only get into trouble inadvertantly; a few are so indifferent to the opinions of others, or so explosive when they overload and melt down, that they're constantly in trouble with the law. I've also heard Aspergers divided into right-brain and left-brain. The great majority are linear chain-of-reasoning left-brain engineers, mathematicians, programmers, and technicians, often relatively inarticulate and limited in imagination (in the literal sense) but unusually good at solving certain finite problems. However, a handful, Grandin among them, are strongly visual and holistic in their problem-solving techniques; I've read about a few artists and literature teachers who self-identified as Aspergers, and know at least one of them first-hand. It's quite a different manifestation, yet the underlying issues with focus, planning, decision-making, literalism, and social intelligence remain. I can add that trying to live or closely work with someone who has Aspergers can be at times almost supremely frustrating. From an NT perspective, there is a huge and inexplicable gap between "what they say they want" and "what they do." Partly this is a performance issue (they are better at intending than putting into action, and expect credit for their intentions -- without granting it for others), but more fundamentally, they *mean* different things. For example, "I want a close relationship" means, more or less, "I want you to accept me and let me join in when I feel like it" [which may be a tiny fraction of the 'normal' amount]. This is not quite what NT's have in mind, and without some understanding of the inarticulable but profound differences in perspective and emotional intelligence, the gap can cause huge problems. It's like a cultural gap (differences in personal space or conflict resolution, for example) but far more profound, and with almost no understanding or ability to articulate from the other side. Another area of acute frustration is that most AS people have trouble with the idea of "just trying" something or accepting someone else's word; they want proof, they want certitudes, they want all the terms spelled out. As a result, one often spends far more time (and goodwill) in arriving at a decision than in carrying it out. Although that's not the intention, the effect is obstructionist -- and exhausting. Well: this is a long answer to a short reference, but the idea of writing a longish account of the whole area been kicking around in my mind for several years now. I expect I should break it into shorter chunks to post. [Editor's note: this document is a combination of the two-part post originally posted by Ms. McLaughlin.] -- EMM AGI '93