A couple years ago, I wrote a rather lengthy paper contrasting dominant American culture and the disability culture, with a focus on autism and Asperger's. With Nightstorm's recent posts on sexuality and autistics, I thought I'd post this; it looks at the existing research literature and the need for caregivers to provide sexual education for those with autism. I haven't touched it up, just pulled the relevant section from the paper, and I'm not including the works cited below for those referenced, as I'm crunched for time and would need to weed through the references for the entire paper. If anyone wants more information on a particular citation, let me know, and I'll post that reference for you. This is a review of the literature current through 2008.
Sexual Attitudes and Behavior
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.