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    Some Thoughts On Parenting, And Then Research Based Blogging: Culture And Autism
    By Kim Wombles | May 30th 2010 05:37 PM | Print | E-mail | Track Comments
    About Kim

    Instructor of English and psychology and mother to three on the autism spectrum.

    Writer of the site countering.us (where most of these

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    View Kim's Profile
    When I did my master's degree, I split my areas of interest: my thesis and several projects leading up to it focused on a fairly complex intersection of how personality traits, explanatory style, religious well-being and spiritual well-being impacted satisfaction with life and adaptive coping in individuals dealing with pain. I wanted to focus my attention on something that didn't revolve around autism, that directly impacted me, and certainly impacted my mother, and before her, her mother. But I kept getting drawn back to autism, in an intense need to understand everything I could first about my son, and as I dedicated projects towards aspects of autism, to my daughters as well. This attention on autism, at looking deeply at the research literature, allowed me to admit, to see, to accept, to deal with the reality that my girls were on the spectrum, as well. It wasn't as hard a journey as it had been with my son, but it wasn't easy, either.

    Trying to decide what to do, how to do it, whether to seek early intervention for my daughters or keep working with them on my own: these were difficult questions to struggle with. Ultimately, we delayed on my middle daughter, and I worked very hard with her to arm her with tools so that she'd be ready for kindergarten, but with my youngest, we realized we needed, could use, some help, and so we got her assessed by the school and she had 1.5 years of preschool with a wonderful teacher and excellent therapists before she started kindergarten this year.

    My children are happy; they're doing well, and they are carving out good lives for themselves. They have hurdles, they certainly have issues, and there are some things they cannot do or do well. I don't write often about them because that isn't what this is about here. We have challenges and parenting them is an exciting and often exhausting experience, but you know what? It is for any parent.

    My daughters will almost certainly carve out vastly different lives than their brother will. They have no cognitive impairment and are either in the process of surpassing my son's academic achievements or already past them. This, by the way, escapes all three of their notice that this is something to be considered amiss. It is not, not to them, and not to me. The girls help their brother when he needs spelling or even help pronouncing or reading a word, and he helps them get their milk, their breakfast, whatever it is they can't do. They work pretty darn well together, while at the same time working pretty darn well to push each others' buttons. They are, in every sense that we think of it, siblings and it is both sublime and seriously exhausting to watch them with each other. When they have each others' backs, it's a thing of sheer beauty, and when they are trying to egg the other on, well, it rivals anything my brothers and I did to each other.

    This paper below was a major project for cultural psychology that has been revamped and updated. In it, I look at the intersection of culture and autism and the research relating to how autistic individuals see culture differently and are in the midst of creating their own subculture (several in fact, and I never really delved into the online aspect of it). I use my son's experience of disability culture to illuminate some of the different facets I look at, as his experience of autism and of microcultures is vastly different in many ways than his sisters' experiences will be. I acknowledge I barely scratched the surface here, although the length would suggest otherwise.

    Introduction

    Culture is an obvious concept, one that is easy to recognize. While easy at the conceptual level, it is much more difficult to define a unique culture and who belongs to it. It may be easier from the outside to pigeonhole people into distinct cultures than it would be for individuals to self-identify as a member of a specific culture and then specify the distinct beliefs, values and customs of that culture. Some individuals may exist within a culture as seeming members, and yet internally reject all that a culture represents to them. Gardiner and Kosmitzki (2008) present the concept of culture as containing several characteristics involving the beliefs, values, and rituals, among other things, that members of a group hold in common. This becomes an externally placed system rather than a self-identified and agreed upon culture, especially when cultures are assumed along national lines. Much like Bronfenbrenner’s ecological system, cultures exist in layers, but with porous, malleable boundaries that change both imperceptibly and explosively, depending on the stimulus.

    The idea of monolithic cultures, especially when the cultures are defined at the national level, is almost certain to be mistake-riddled. As Baron-Cohen (2005) points out, research is not about saying that all of x are y, but instead “only reveals differences between means, it says nothing about individuals” (p. 77).

    The concern of how a particular culture is defined is not original or unique; Matsumoto and Juang (2008) present some of the difficulties inherent in equating nationality with a particular cultural identity shared homogeneously amongst all members of the nation. Just as difficult is the concept of equating ethnicity or race with a specific cultural identity. It can be argued that multiple micro-cultures exist within our national culture, and that our extreme microcosm of our family unit plays an even more important role in how we express our emotions, as well as how we allow ourselves to experience our emotions internally. These microcultures would equate with Bronfenbrenner’s microsystem, mesosystem, and exosystem, while the national identity or national culture is equivalent to the macrosystem, which in many cases may play only a slight and potentially invisible role in an individual’s life (Gardner&Kosmitzki, 2008). The disability culture can be seen as a subculture of the mainstream culture. This paper focuses on two overlapping layers within the American culture, that of the dominant culture, and that of the disability culture, with most of the emphasis on the culture of autism and Asperger’s, which ever increasingly grows larger and more complex, as individuals on the spectrum find each other in support groups both online and in person. As many individuals and many cultures do, individuals on the spectrum define themselves in opposition to what they may perceive as the dominant and domineering culture, which they have termed the NTs, the neurotypicals.

    Disability Culture

    When does a group of people become members of a culture? Is it when the group members decide they have a distinctive culture? Or is it when the outside world decides the separate group represents a distinct and separate culture from the dominant culture?  Where culture is concerned, it appears that this is a divisive issue, and there will undoubtedly be many non-disabled individuals who argue that disability does not represent a cultural entity. However, many have argued, both from the perspective of the disabled and from the perspective of the caregivers, that disability can represent a distinct and separate culture from the mainstream, dominant culture. Hall (2002) notes that “True disability culture embraces all persons who have been marginalized by society because they are viewed as defective, not valid (“invalid”), or somehow in need of pity” (p. 145). According to Hall, disability culture has several key values that includes accepting human differences, a pragmatic approach to help (“helping others as a natural and right thing to do”), a humorous approach to disability that may often be seen by the mainstream culture as dark, and a “sophisticated future orientation” that looks forward to potential difficulties in order to work around them or prevent them entirely (p. 146).  An identification and acceptance of membership in the disability culture can have distinct advantages for the disabled person, providing acceptance, support, and positive feedback for the individual (Hall; Lipson&Rogers, 2000).

    Autism and Asperger’s Culture

    Individuals with autism have multiple challenges to contend with: an impairment in perceiving other’s mental states, difficulties in grasping abstract concepts, sensory overloads and the tendencies to disconnect from one’s surroundings, all of which can lead to significant social difficulties. Baron-Cohen (2001b) notes the universality of some level of deficit in theory of mind in all individuals with autism and concludes that the advances beginning to be made in neuroimaging offer up tantalizing evidence of that  the “key neural regions for normal mindreading are the amygdala, orbito-frontal cortex, and medial frontal cortex” (p. 15). In addition, it seems quite likely that autistic brains are brains that are much better at systemizing (organizing) than at empathizing (Baron-Cohen, 2005). It should be noted that the DSM-IV (American Psychiatric Association, 1994) specifically uses the term Autism Spectrum Disorder with good cause; difficulties range from mild (and often outwardly imperceptible, especially in girls) to severe and debilitating and coupled with intellectually disability, as well as additional comorbid disorders, such as epilepsy and Tourette’s syndrome (Attwood, 1998). The level and type of impairments in the individual with autism may play a role in which subculture of the disability culture is identified with primarily. For those with accompanying intellectual disabilities, there may be primary identification with that particular subculture.

    Psychological Processes

    Intelligence



    The larger culture to which I will compare the disability culture is the American culture, defined loosely as an individual’s identification as an American citizen, leading to a connection with others who are so identified, with the common values of democracy, personal freedom, equality, and independence as the most commonly shared ideals. A proviso that these values are not necessarily upheld by various microcultures within the American macroculture should be acknowledged. For the conception of intelligence for this particular assignment, the definitions for intelligence and measurements of will be drawn from the American psychological and educational domains of American culture. In a sense, the concept of American culture is being used not in a narrowly drawn, precisely defined way, but along the lines of Gardiner and Kosmitzki’s (2008) concept of culture as containing several characteristics involving the beliefs, values, and rituals, among other things, that members of a group hold in common. In addition, Matsumoto and Juang’s (2008) definition of culture is incorporated into the concept of American culture,  with the inclusion of the concept of it being transmitted over time, generationally, in order to not only meet survival needs, but those that transcend mere survival.



    Matsumoto and Juang (2008) provide a synthesized definition of intelligence as considered by “contemporary American psychology” as a “conglomeration of numerous intellectual abilities centering around verbal and analytic tasks” (p. 134). This, I think, leads to a conception of a more unanimous agreement of what intelligence is than is in fact found among American psychologists.



    Sternberg (1988) argues quite convincingly that not only is there not one particular North American view of intelligence, there is no one North American intelligence, leaving aside any questions of other cultural views of intelligence or cultural intelligences. Sternberg (1988) goes on to discuss the difficulty of conducting cross-cultural research into intelligence, calling it a “quicksand pit” (p. 61). While there is difficulty in creating culturally-fair tests of intelligence, Sternberg (1988) contends that while cultural manifestations of intelligence may differ, there are “components of intelligence” that are “cross-culturally universal” (p. 80).  Fagan (2000) would agree that there are universals in intelligence, but would argue that the measurement of this universal should be processing and should be measured by “means of tests of selective attention to novelty” (p. 171). In this way, one would have a culturally-fair test of intelligence.



    Fagan (2000) argues that modern tests of intelligence are in fact measuring “what one has been taught” (p. 2000). Sternberg and Grigorenko (2004) agree with the contention that intelligence tests measure what has been taught or previously learned, rather than some innate ability or potentiality.



    In order to correct for the inherent flaws in the way that intelligence is measured in the Western world, Sternberg has proposed several different theories of intelligence, including his Triarchic theory built of “componential intelligence, experiential intelligence, and contextual intelligence” (Gregory, 2004, p. 154). Sternberg, Okagaki, and Jackson (1990) also discuss practical intelligence, which is in part composed of tacit knowledge: “knowledge that is not explicitly taught or even verbalized” (p. 35). Sternberg (2004) takes care to discuss intelligence from a culturally sensitive basis, defining it as having those set of skills that fit that particular culture’s needs for success. Both this definition of intelligence from a culturally sensitive perspective and Sternberg’s definition of practical intelligence imply that one can alter one’s level of intelligence with effort and dedication.



    American psychologists, despite the work of psychologists like Sternberg and Fagan, still tend to measure intelligence by standardized and long-recognized intelligence tests like the WISC-III, WAIS-III and Stanford-Binet Fifth Edition (Gregory, 2004). The WISC-III is used commonly in educational settings to diagnose children with cognitive impairments or intellectual disabilities (Burton, 1997). According to Burton, intelligence tests “measure intellectual functioning in relation to the distribution of such functioning of the population as a whole” (p. 38). As such, it is a comparison of one individual’s level of functioning to others in his country, and Burton contends that these measurements are “both academically biased and may be culturally unfair” (p. 39).



    While there are certainly pitfalls to speaking of American culture as a generic whole, it is relatively accurate to proffer the notion that many Americans (particularly white middle- and upper-class) tend to equate IQ scores with intelligence, and place a value judgment on that IQ score. People with high IQs are seen by many as having greater worth than those who have intellectual disabilities.



    Just as it would be a mistake to assume that the American culture is a cohesive whole, it would be erroneous to contend that the disability culture is a monolithic entity. While those with a disability may feel a kinship to others with a disability, there are distinct and separate cultures comprised of disabilities. My interests here, no surprise, are the specific disability cultures are the Asperger’s culture and the intellectually disabled culture (of which those with autism are often subsumed into). Hall (2002) points out that one of the biggest differences between the disability culture and other cultures is that most often those who identify as a member of the disability culture often do not share that identity with their family members. It should also be noted that it may not be passed down generationally through offspring, although as the apparent genetic heritage of autism becomes clearer, even that distinction is disappearing.



    For the intellectually (and many also have physical disabilities, as well) disabled culture that my son identifies with and is a part of, intelligence is defined differently. Asked to define what intelligence is, my oldest, Bobby (personal communication, March 21, 2008), described it as “knowledge and what you can do.” Whereas most neurotypicals, and those who identify with having a high IQ, as some in the Asperger’s culture do, place a value on the IQ score, those like my son and his friends at the adaptive recreation center tend to think quite differently about intelligence and its value. There is less competition and jockeying for position in his community, and to the degree that one individual has less intellectual impairment, he or she is seen not as better, but as a contributor to the collective whole. More emphasis is placed on helping; when one can do something another can’t, help is offered with no sense of greater value placed on the individual who is less impaired.



    Ultimately, because the larger American culture is the one providing care for the disabled, the larger culture’s measurements of intelligence are the ones used. From my own personal experience over the last two decades with my own children and my experience with the disabled community over my lifetime (through a close affiliation as a child and an adult with the Abilene State School through my mother in her work as a nurse and through my husband during his time working as direct care staff), the numbers generated by these intelligence tests have a tremendous impact on the lives of the intellectually disabled through their placements in academic or institutional settings and in how they are viewed by those who provide their care and treatment and by society at large, but not in how they are viewed by those who share the impairment.



    Emotions



    According to Matsumoto and Juang (2008), cross-cultural research shows universalities among all cultures in basic emotions such as sadness, fear, anger, disgust, happiness, enjoyment, and surprise. These emotions are “neurophysiological realities” (Matsumoto&Juang, p. 199). There are, contend Matsumoto and Juang, both universalities and cultural differences in emotion antecedents, emotion appraisal processes, expressive behavior, and in emotion recognition. Tsai (1999) contends that research does not show “differences in overall levels of emotional reactivity” between the cultures examined, but that culture can “influence emotional reactivity in very specific ways” (p. 160).



    Having had the benefit of having lived overseas for six years, and across the eastern Unites States, as well as the cultural infusion that the military lifestyle affords, I do believe that culture influences how we display our emotions in public compared to how we display them in private. Each culture creates its own nuanced position on which values it honors and which values it holds in disdain. The public expressions of those values (emotive qualities) that are held in disdain are less likely to be displayed. To provide a very Trekkie (and reveal myself to be, well, perhaps a bit of a geek) illustration, Klingons hold honor to be paramount in importance; stoicism is revered, aggression and physical courage are prominently displayed in that culture; Vulcans place logic and reason above any display of emotion; Romulans honor deception and secrecy, as do Cardassians, Bajorans idealize spirituality and connection to their gods. You see my point. Perhaps our cultures are not quite so simplistically portrayed, but we are often not far from our stereotypes; the problem is which culture we both identify with and that others identify us with. Matsumoto and Juang (2008) discuss the American culture’s emphasis on feelings and the need to be aware of our feelings; to be impaired in that ability puts the individual in American society at an extreme disadvantage both in one’s private life and in one’s professional life. According to Matsumoto and Juang, Americans place a primacy on feelings and locate emotions in the heart, and by doing so, “identify it with the most important biological organ necessary for survival” (p. 219).



    So, if Americans place a primacy on being in touch with one’s feelings and in being able to understand and predict another’s feelings, how screwed are people with autism or Asperger’s, who have varying degrees of social impairments, in part related to difficulties in ascertaining both their own and other’s emotional or mental states?



    LaFreniere (2000) contends that as children move from the preschool to elementary years, “developmental advances in cognition, language, self-concept, and social relations set the stage for emotional communication that gradually begins to resemble that of adults” (p. 222). Fundamental to this is the development in the child of theory of mind, defined as simply as possible as the ability to realize that mental states exist within one’s own mind, and within others’ minds, and that these can mental states can differ. The development of theory of mind (or inner states) “underlies the increasing complexity of the child’s social relations and emotional experience” (LaFreniere, p. 222).



    A great deal of time and effort has been spent on the theory that people with autism spectrum disorder have impaired theory of mind. This is a contentious area in the autistic culture, and many adult autistics on the internet have a rather hostile reaction to Baron-Cohen’s theory of mind theory. It would, I think, be quite easy to wander around the neurotypical culture and find blatant displays of a lack of theory of mind, or if not an inherent deficiency, a complete disregard for other’s feelings and thoughts.



    As a general whole, according to Baron-Cohen (1985), individuals with autism have varying levels of impairment relating to theory of mind. According to Baron-Cohen (2001a), a person exhibits a theory of mind when he or she can recognize and think about the state of one’s own mind and another’s mind and recognize that just because he or she is thinking or feeling something, the other individual is not necessarily feeling the same thing. This is equivalent to first stage theory of mind and is often tested with the Sally-Ann experiment, where one doll places an item in one place and leaves the room, the other doll moves it to another location, and the child is asked where the first doll will look upon returning to the room. If the child has first order theory of mind, the answer that is offered will reflect that the doll will look in the place the doll left it, not where it really is (Baron-Cohen, 1985).



    The second order of theory of mind abilities consist of an individual being able to recognize that another person can think that someone else believes x, y, or z (Dan thinks Jan thinks he doesn’t like her). While the first order theory of mind acquisition usually occurs around age 4 in children who have no neurocognitive deficits, the second order theory of mind abilities tend to develop between the ages of 6 and 7 (Coull, Leekam,&Bennett, 2006). Even for those individuals with autism who manage to master both first order and second order theory of mind abilities, they still may lack higher-order abilities like being able to recognize bluffing or being able to recognize a person’s mental state from expressions around the eyes of other individuals (Baron-Cohen, 2001a).



    Baron-Cohen posits theory of mind as a “crucial component of the social impairment in childhood autism” (2001a, p. 37).  According to Baron-Cohen (1985), theory of mind is not dependent on intelligence levels. The theory of mind model is the idea that a person understands the idea that not only does he possess states of mind (feelings, thoughts, and beliefs), but that other people also possess states of mind and that these might differ from his own. An inability to conceive of this state of mind is what sets an autistic person apart from those who can, although the degree of impairment in this ability to form mental representations varies not only between individuals with autism but within the individual himself, as he develops throughout time, although even those who achieve second-order representations still tend to misunderstand bluffs, sarcasm and all but the most obvious of jokes.



    Pellicano (2010) notes the “now strong evidence that individuals with autism show atypicalities across multiple cognitive domains” (p. 530). Pellicano contends, based on the latest research: “There are good reasons, however, to suspect that  atypicalities in core aspects of cognition in autism might not be independent but should be linked throughout development” (p. 530). Pellicano points out that development is a dynamic process and that “a selective impairment at an early point during development is likely to have substantial knock-on effects on the emergence of other cognitive functions” (p. 530). Additionally, “numerous studies of young, typically developing children have highlighted functional relations between certain abilities, particularly ToM and EF, and have further characterized the nature of this relationship during the course of development” (Pellicano, p. 530).



    Executive functioning and theory of mind share a “robust relationship” (Pellicano, p. 531). According to Pellicano, this relationship is not well understood as it relates to autism. However, Pellicano notes that there are studies which “have hinted at the possibility that the developmental course of the ToM–EF relation in autism might follow a similar pathway to that of typical development” (p. 531). In a previous study conducted by Pellicano, it was found that: “No child showing impaired EF also possessed intact ToM, suggesting that intact EF is a necessary, but not sufficient, condition for the development of ToM in autism” (p. 531). Also of interest is the potential role a weak central coherence could play in the development of both theory of mind and executive functioning (Pellicano).



    If we accept the proposition that theory of mind undergirds emotional understanding and acceptance, and there is considerable research into theory of mind would seem to support this, then how specifically do neurotypical children and children on the autism spectrum differ in emotional expression? Losh and Capps (2006) investigated this specific question, comparing a group of children with autism/Asperger’s to a control group; the groups were matched for age, for verbal IQ, and gender.  Children with autism/Asperger’s were distinctly different in their ability to relate emotional states, most pronounced was “the manner in which children recounted their remembered experiences” (Losh & Capps, p. 815). Children with autism were able “to discuss contextually appropriate accounts of simple emotions” but their “strategies for interpreting and conveying all types of emotional experiences differed from those strategies used by typically developing children” (Losh & Capps, p. 815).  While the ability to reflect on and communicate emotions may be impaired in individuals with autism, especially when the emotions move towards complex and self-reflecting (Losh & Capps), the physiological response in emotions is not impaired and is normal, as compared to a group of typically developing children (Ben Shalom, Mostofsky, Hazlett, Goldberg, Landa, Faran & et al., 2006). There are potential confounders here in that language, both receptive and expressive, may compound the difficulties here, and so what may appear to be an impaired theory of mind may more reflect language difficulties.



    In the research literature review, examples of deficient theory of mind in individuals with autism can be found in an inability to make the distinction between physical and mental experiences (Baron-Cohen, 2001b). In addition, individuals with autism will often fail to mention or notice the “mental functions of the brain” while being able to talk about the physical functions (Baron-Cohen, 2001b, p. 4). Individuals with autism also fail to distinguish between an object being one thing but representing another; Baron-Cohen gives the example of a candle shaped like an apple. Losh and Capps (2006) found no discernible difference between the group of children with autism/Asperger’s and the typical group in the ability to relate non-emotional states like being sick or tired.



    As the mother of children on the spectrum, I have perhaps more experience with the disability culture (from the outside looking in) than I would have expected to. My son attends a day center for the intellectually and physically disabled, and has for the last seven years. He also participates in Special Olympics throughout the year. There is a marked difference in this microculture he is a part of as relates to the expression of emotions. The biggest difference, I contend, is in the emotional display, which lacks the subterfuge or subtlety that the exoculture or macroculture of the neurotypical. Happiness, both in the intellectually disabled and the autistic, is often physically and exuberantly expressed, while the neurotypical might only express a mild physical display of happiness. A greater difference exists in the reaction to emotional displays. The disability culture (specifically this microcosm of intellectually disabled and those with autism/Asperger’s who may or may not have an intellectual disability as well –my son is intellectually disabled and his primary cultural identification, I think, if he could express it, would be with this intellectually disabled culture) accepts without judgment emotional displays; meltdowns, exaggerated movements, and odd out-of-proportion responses are not reacted to with derision, disgust, or mockery, whereas they would be in the neurotypical culture. Embarrassment, as a consequence, appears to be felt less in this particular micro-disability culture when within that community. From my personal experience with my son (who has been homeschooled since he was nine, self-esteem and self-efficacy seem to remain high when supported within this disability culture and without the potentially and often negative feedback that the neurotypical culture provides; any and all accomplishments tend to be responded to effusively, while failures are met with empathy and commiseration. Apparently, what the neurotypical culture would see as a failure, those in the real-world disability culture do not see as failures, but good tries.



    Time



    Matsumoto and Juang (2008) write that time is experienced differently by people of different cultures, “even though time should be objectively the same for everyone” (p. 131).  I don’t think Matsumoto and Juang are talking about the perception of the passing of time, which is absolutely subjective and dependent upon variables within the person such as age and cognitive functioning. I’d like to offer again some examples from the neurotypical and those with intellectual disabilities, like my son. Most individuals, once they reach the appropriate level of maturation, can tell time, keep track of time, orient themselves in time, attend to the passage of time, plan with time frames in mind, distinguish between minutes and hours, between days and weeks, between weeks and months and years. Some individuals with cognitive impairments such as my son, dealing with autism and intellectual disability and stroke-damage, have difficulty with the concept of time. My son is only loosely anchored in time; he has tremendous difficulty describing and conceiving of events that have happened in the past or will happen in the future. He anchors himself in the present and immediate future with the use of the clock and calendar, and yet there seems to be no understanding in the difference in length of time between a day or a week or a month or a year. I believe to some degree this is based on the cognitive deficit, but that his autism asserts itself in the need for precisely adhering to a clock. Meals are at a specific time. Pickup or drop off at the center is at a specific time (and if you vary by even a minute on his watch, he informs you). And yet, the future never gets closer; someday is always someday with no sense that it is getting any closer. This ever-present focus is not unique to my son, surely, and I believe could be representative to some degree of many of his peers at the center, who remain focused on the right now, although of course future events can be relished and looked forward to; it occurs differently than it does for those who do not have an intellectual disability. The intellectually disabled do not tend to focus on time, or on using time in the same manner; there is no sense that time is passing them by, that time is being wasted. Time is not something that can be run out of for my son and many of his peers. Time is abundant, and they do not sense that life is passing them by. There is not the same discussion of time or of regrets because of time used poorly. It is, I think, in many ways a preferable way to be; ever in the present, in the moment, and I often think that some folks who turn to Buddhism spend years of effort trying to do what my son does effortlessly: exist in the now.



    For the neurotypical of whatever particular culture, time moves differently. Time passes and slips away. Time marches on. There are cultures, certainly, that do well at making time for the important things in life: food and companionship. Anyone who’s been to Europe can relate to a slower way of life than here in the states. For many in the United States, especially the affluent, time is something to be filled with productive activities that will help them get ahead in their career or their children to get ahead in the world, to get into the right college. The use of time as well as the perception of time, I think, is not so much cultural as it is related to socioeconomic status. Ask those who live in poverty if time doesn’t move much too slowly for them, at times. Time and our perception of it and use of it changes with age, as well. The older we get, the less we may feel we have of it, and the faster it all seems to go by.



    But, for those with intellectual impairments, time is a much simpler thing. And I’m going to argue here that the way in which the culture of intellectual disability transmits that sense of time is through their interaction with each other and with the caregivers and families. For those privileged to be related to or work with those with intellectual impairments, time takes on new meaning, shifts itself and can stop, even, when those glorious moments occur and we can slip in and see the world through the eyes of one who lives in the moment. Time is to be enjoyed. Time is to be spent in the moment you find yourself.



    Morality



    This subject area is one I find personally fascinating, in part because of an interest in deviance and rationalization, but also because it has been interesting and challenging to understand to what degree and how my son (who by now anyone who has read my posts knows he is autistic and intellectually disabled) reasons morally. Because gray areas  may not exist for individuals with autism and rationalizing behavior is also not something easily or well done by individuals with impairments in theory of mind, it has been insightful to watch my son’s reactions to injustices. I have come to believe, through watching him as he has aged chronologically but not remained cognitively impaired, that moral reasoning at its base is affective in nature. Harm to others causes a physiological reaction that is visceral enough for the individual with autism to react personally and emotionally. The bandied-about lack of empathy, at least with my experience with my children, is not based on an inability to feel deeply, keenly, another’s pain. They first have to notice the pain is there; they then feel it in a deeply personal way. Injustices rip at them; hurts shred their hearts, and they want to help, they want to fix. On the other hand, getting them to realize the consequences of their actions, when they have caused harm, can be incredibly difficult; connecting the dots and recognizing the harm is a consequence of their actions can take some time and effort.



    I think that there is reasonable evidence to argue that moral reasoning where it relates to actions that cause harm to others is affective in nature rather than cognitively based.



    Matsumoto and Juang (2008) contend that morality is “heavily influenced by the underlying, subjective and implicit culture in which it is imbedded” (p. 102) and summarize Kohlberg’s three levels of moral development, although they do not delineate the six stages. According to Kohlberg and Hersh (1977), level 1 preconventional morality is divided into two stages: “punishment and obedience orientation” (concern with punishment) and “instrumental-relativist orientation” (tit for tat); level 2 conventional morality is divided into two stages: “interpersonal concordance orientation” (upholding shared attitudes of the community, good motives and care for family/friends) and the law and order orientation (good of whole society); and level 3 postconventional morality is divided into the stages of social-contract, legalistic orientation (basic rights and democratic process), with the highest stage being the “universal-ethical-principle orientation” (commitment to justice that allows civil disobedience) (pp. 54-55; Crain, 1985).  There appears to be some consensus from cross-cultural research for the universality of at least the lower stages of Kohlberg’s theory of moral development (Matsumoto and Juang, Dawson, 2002). Dawson notes strong correlations between educational levels, as well as age levels, and the separate stages of moral development. In addition, Dawson’s reexamination of earlier cross-sectional and longitudinal studies using Rasch’s models for measurement confirms that while there is a slight difference in stage level between men and women, cohort differences and educational levels appears to account for this minimal variance of 0.03%.



    Morality is viewed as a universal trait, so much so that Sunar (2002) notes an absence of morality is seen as a psychological disorder. Sociopaths and psychopaths lack if not the moral sense itself, the conscience that reinforces conforming to moral judgments.  This is the extreme end of the pathological, but raises Sunar’s argument that differences in moral sense are several and different, involving specific individual differences, perceived gender differences (Gilligan’s contention that men are focused on the more abstract principles of justice while women execute a stronger morality of caring, see Sunar; Matsumoto and Juang), and cultural differences (of which religious beliefs may be  subsumed within the culture or may be the dominating principle behind the culture’s moral values). Although never specifically addressed by Kohlberg, differences due to intellectual disability either through trauma or through genetic differences in neuroanatomy, I would argue that differences in moral reasoning may occur at the individual level in part because of these neurophysiological differences and it may not be reasonable to expect that all individuals could or do progress through these hierarchical stages of Kohlberg’s (see Blair, Marsh, Finger, Blair, & Luo, 2006; Wood, 2003 for specifics on neurological details).



    I recognize that a large part of my argument for the development of moral reasonings is not in fact culturally based, but rather rests in the neurophysiology of the brain. Without the correct neurological wiring, advanced stages of moral reasoning may not be feasible. Research confirming the role of age and education would seem to confirm this in the sense that the intellectually disabled tend not to receive or benefit from advanced education. I contend, though, that even in this circumstance, it can be convincingly argued that the intellectually disabled and autistic cultures, which can and do overlap, reinforce the moral reasoning levels of its members, and so reinforces Kohlberg and Hersh’s argument that moral reasoning is advanced by the dialectic process and through social exchange.



    Individuals in the American neurotypical culture progress through Kohlberg’s stages of moral development as they age and learn, with the apparent level of moral development correlating to age and educational level, although some small numbers of individuals might reach higher levels at younger ages and less educational attainment. Kohlberg’s model, although it has a stage 6 and once scored individuals at that stage, is now considered theoretical only and no longer scored (Crain). Most individuals in the neurotypical culture reach the conventional morality level.



    Velez Garcia and Ostrosky-Solis (2006) argue that morality can be distinguished from social conventionalities. Kohlberg’s theory of moral judgment does not make this distinction explicit and subsumes the two separate concepts into his theory of moral development. Moral emotions arise “when individuals interact or when moral violations are perceived” (Velez Garcia & Ostrosky-Solis, p. 352). Moral emotions are physiological responses and are not implicated in individuals with autism (Blair, Marsh, Finger, Blair, & Luo). Blair et al. contend that despite impairments in theory of mind in many individuals with autism and consequently a difficulty inferring mental states, individuals with autism are able to distinguish in the school setting between social convention violations, “conventional transgressions” and moral violations (one resulting in potential censure and the other in potential harm to another) (p. 15). The difficulty arises for individuals with autism where “the recognition of appropriate social behavior (either as a witness or potential instigator) also requires the representation of mental states” (Blair et al., p.17). Where rules are explicit and known, individuals with autism are equivalent to neurotypical peers, but where the rules are situational specific and implicit, impairments in language and theory of mind create difficulties in being aware of social rules and potential difficulties. It is my argument that Kohlberg’s moral development theory is not perhaps applicable in the same way for autistic and intellectually disabled individuals in as it is neurotypical individuals. Instead, where it involves moral transgressions where harm to a victim can occur, both neurotypicals and individuals with autism and intellectually disabilities react not cognitively, but affectively (note that psychopaths and sociopaths are not included in this discussion of affective response) (Velez Garcia & Ostrosky-Solis).



    Grant, Boucher, Riggs, and Grayson (2005), in a study comparing moral reasoning abilities between children with autism, children with learning disabilities, and normally developing children, founds that children with autism were as likely as the other two groups of children to use “motive for the basis of culpability” judgments as well as judging “damage to people as more culpable as damage to property” (p. 325). Despite being able to judge situations similarly, children with autism had difficulty providing appropriate justifications for their judgments. Grant et al. cite Blair’s (1996, 1999) findings that children with autism are not impaired in their affective response. It appears that where children of autism differ significantly is in their ability to cognitively assess situations and offer justifications based on cognitive reasoning. Grant et al. suggest that verbal mental age may be implicated in this inability to provide justification, as well as impairment in executive functioning and in ability to generalize.



    Enculturation and Socialization



    Socialization, according to Gardiner and Kosmitzki (2008), relates to how an individual accepts membership into a particular culture and adopts (at least outwardly as displayed by public behavior) the values, customs, behaviors and sundries associated with the specific culture. Socialization is the process, write Matsumoto and Juang (2008), where enculturation refers to the products of socialization: the psychological components that correlate with the outward socialized behaviors. A necessary component, at least it seems to me, for socialization and enculturation to occur is an intact, developing theory of mind (the ability to infer mental states of others).  The problem, though, in explaining cultural differences, is in how theory of mind is posited. Lillard (1998) notes that “the major theories of how one develops a theory of mind all predict universality, at least in the early years and in some core theory” (p. 5). Lillard contends that there are two main theories of theory of mind, the ‘theory theory’ and the simulation theory. Theory theory relates to individuals drawing “on a theory of mind to understand people's behaviors, psychological states, and traits” (p. 4). According to the theory theory, “alternatives that are not in one's folk model are generally not even considered” and “one's ideas about others are derived solely from the available evidence” (p. 4) A simulation theory of mind, on the other hand, contends that the individual uses a simulation of one’s own internal processes and projects that on the other person in order to understand the other person. Theory mind, according to Lillard, produces three preconditions: “a) knowing of the existence of a mental state, (b) having a need to explain a behavior, and (c) drawing correct inferences” (p. 6). The problem with this is that this reflects, Lillard argues, European American cultural biases, one of which is that people always consider other’s internal states preceding the behavior (perhaps social scientists, psychologists, and parents spend a great deal of time reflecting on other’s internal states in order to understand behavior, but I’d wager most people in the United States are not considering strangers’ internal states to explain their behavior most of the time – the next time you get cut off, notice if you think to yourself, “I wonder what he was thinking with a real concern for those thoughts). Although Lillard doesn’t explain why these two possible theories concerning theory of mind would result in universal constructions across cultures of theory of mind in individuals not impaired neurologically in theory of mind, the brunt of Lillard’s argument is that these very preconceptions lead to cultural variations in theory of mind.



    Because of the difficulties with social relationships and communication that most individuals with autism have, socialization is not innate. While difficulties with theory of mind may have a role to play in difficulties with socialization as the child with autism grows into adolescence and adulthood, I’d offer that a lack of theory of mind is not the main culprit that makes socialization and enculturation more difficult for the person with autism. Children without autism, even those with intellectual disabilities, tend to absorb cultural values, beliefs, and behaviors quite readily. Children with autism, in contrast, tend to be inwardly directed rather than outwardly directed and so may be unaware of not only the subtle, unspoken cultural values, but even those that are quite obvious and visible. These differences in awareness of one’s surroundings and the potential significance or meanings underlying events lead to a lack of enculturation on the part of the person with autism. Outward, overt displays of social norms and cultural values may not be present in individuals with autism, and certainly, it can be interpreted that no internal acceptance has occurred, either, although there may not be a rejection of these norms; instead an unawareness that they exist and when an awareness does occur, no sense that compliance with should be displayed.



    The ways in which different cultures react to persons on the autism spectrum, as could be expected, varies. An example of this is the way some researchers in England are coming to view high-functioning autism and Asperger’s Syndrome compared to how far too often and by far too many people in the United States consider high-functioning autism and Asperger’s Syndrome. Baron-Cohen (2000) provides a dozen well thought-out and research based arguments for why high-functioning autism and Asperger’s Syndrome should be viewed not as a disability but instead as a difference. How parents and families, teachers and service providers, as well as the larger community view a condition determines how the individual is treated and accepted. If it is viewed as a deviant status, then self-esteem and self-efficacy will be low for the individual so stigmatized. As the American culture gains more awareness of autism as well as an appreciation for the tremendous variety in functional levels and the potential for coexisting disorders, and as adults with autism and Asperger’s find their voices and are heard by the mainstream, neurotypical culture, it is possible that our culture will join the British culture in a more positive perspective on what it means to be autistic.



    Sexual Attitudes and Behavior (appeared previously as its own post)



    In a national cultural values survey, Fitzpatrick (2007) interviewed 2,000 Americans about their religious and cultural values. Americans overall, according to Fitzpatrick, can be divided according to their beliefs in the “role of religion in everyday life” into three “value groups—Orthodox, Progressive, and Independent” (p. 3).  The majority of Americans are independents (nearly half) and 91% of them believe in god, and agree with the orthodox in matters of sexual morals. About a third are orthodox, “fundamentally religious in outlook” while one sixth of Americans are progressive and are “fundamentally secular” (Fitzpatrick, p. 3). What an American believes about sexual attitudes and behaviors depends to a large extend on one’s religious identification. While 83% of all Americans find adultery to always be wrong, when broken down by group, only 61% of progressives believe that, while 95% of orthodox Americans hold that belief. Two thirds of orthodox Americans think that premarital sex is wrong, but only 3% of progressives do. Only 15% of progressives think that homosexuality is wrong, while 83% of orthodox and 39% of independents feel that way. If one was to separate Americans based on age, socioeconomic status, ethnic identity, regional affiliation, etc., one might find even more drastic differences between people who adhere to the idea (at least) of a common American cultural identity. Since this survey was a representative sample, and since it found that about half of Americans identified as independent, the assumptions of this assignment will be based on this broad sample of Americans. Independent Americans tend to agree that adultery is wrong, but premarital sex is okay, that sex between high schoolers is wrong (68% of independents), that couples should be faithful, and that divorce is acceptable.  While most independents are accepting of homosexuality, most are also against same-sex marriage.  Gardiner and Kosmitzki (2008) note that where cultural norms are accepting of premarital sex, it is “an expression of love and affection” (p. 181). While this cultural values survey didn’t ask for the reason or meaning of premarital sex, an argument could be made that who is answering the question as well as whether the question is referring to an ideal state or the actual state of affairs, determines the answer. While most independent Americans’ attitude towards premarital sex might hold ideally that sexual relations should be because of and in order to share love and affection, many would also admit that often this is not the case regarding actual premarital sexual behaviors.



    Issues concerning sexuality, sexual attitudes, and sexual behaviors in individuals with autism and Asperger’s are complex, both from the perspective of the caregivers and from within the autistic/Asperger’s community. Much depends on the intellectual capacity of the individual, and his or her particular environment. Studies have examined the sexual behaviors of individuals on the spectrum who live in group homes and institutions. Koller (2000) notes that there is limited research regarding sexuality in individuals on the spectrum when compared to research regarding sexuality in individuals with intellectual disabilities without autism. However, from what is known, Koller points out that educating both the caregivers of individuals with autism concerning sexuality and the individuals with autism is necessary in order to prevent adolescents with autism from forming “unhealthy opinions and views about sexuality which affect their self-esteem and interactions with others” (p. 126).



    Sexual behavior has been reported to be a large concern of caregivers of individuals with autism, and studies concerning sexual behavior of individuals with autism have shown masturbation to be the most commonly engaged-in sexual behavior, with a significant minority engaging in masturbation in public or at otherwise inappropriate times or places (Hellemans, Colson, Verbraeken, Vermeiren, & Deboutte, 2007; Koller; Van Bourgondien, Reichle, & Palmer, 1997). Sexual interest appears to be almost universal in high functioning male adolescents with autism, according to the study conducted by Hellemans et al., and masturbation was known to be engaged in by nearly half of the participants, and nearly half engaged in sexual behavior with another person, predominantly kissing and cuddling. Van Bourgondien et al., in a sample that included femailes as well as males, with a broad range of ages and functional levels, found that 68% engaged in masturbation, with75% of the male respondents and 24% of the female respondents engaging in the behavior. Over three quarters of the sample engaged in one or more sexual behaviors, with 34% of the respondents engaging in person-oriented sexual behaviors. The most significant finding of these studies has been the relatively rare known attempts at sexual intercourse with others. These studies do have significant limitations in that the samples are small and may not reflect the sexual behaviors of individuals with autism and Asperger’s who do not live in group homes or institutions.



    Konstantareas and Lunsky (1997) compared individuals with autism and individuals with developmental delays in their relative sexual attitudes, interests, and experiences and found that individuals with autism “endorsed more sexual activities” than those with developmental delays, but there were no significant differences in sexual experiences in the two groups (p. 397). In addition, the higher the cognitive levels in the individuals with autism, the better able to define a sexual activity.  Konstantareas and Lunsky also found that the females with autism  reported more sexual experiences than did the females with developmental delays; a potential reason for this is,  according to Konstantareas and Lunsky, is the tendency for individuals with autism to be bluntly honest and uncensored in their conversations. As a parent to an adolescent male with autism, I can attest to the lack of awareness of potentially socially awkward or inappropriate conversational topics.



    Because of the typical rigidity with which views and beliefs are held by individuals with autism, what their caregivers provide in sexual education is likely to have a dramatic effect on what they believe is right behavior and wrong, so that in a family where traditional religious values are upheld, the individual with autism may take the traditional beliefs regarding sexual behavior to be literally true, and hence have rather strong negative reactions towards any sexual behavior outside of those dictums. How the individual with autism is treated concerning matters of sexuality will play a pivotal role in the attitudes and behaviors the individual adopts and engages in. These attitudes and behaviors will be as singularly individual as they are in persons without autism. In the end, culture cannot account for the individual’s private, unseen behavior, although it may reflect the publicly endorsed attitudes. What is important for individuals with autism is careful, compassionate education regarding appropriate social behavior, sexual or otherwise. Koller advocates for thorough, continuous, competent, nonjudgmental sexual education for individuals with autism, so as to “protect the individual from sexual exploitation, teach healthy sex habits, and increase self-esteem through systematic, individualized approaches” (p. 131).  This education falls to the caregivers and will play a large role in how the individual with autism comes to view his or her own sexuality.



    Summary



    Cultures are not always separate and distinct from one another, but often overlap, so that one individual can belong to two or more different cultures. Ideally, individuals within the disability culture should be able to freely and comfortably move from the disability culture to the mainstream culture, finding acceptance and nurturance from both. If the parents and caregivers of children with autism have any say, and the Aspies and Auties, as well, who find their voices in ever-increasing numbers, then the mainstream culture will be forced to challenge its notions of deviance and acknowledge that all persons, regardless of disability, have a place and a say in the mainstream culture.



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