Journal of Autism and Developmental Disorders, Vol. 2L No. 4, 1991
Sexual Attitudes and Knowledge of HighFunctioning Adolescents and Adults with Autism Opal Y. Ousley and Gary B. Mesibov 1 Division TEACCH, Department of Psychiaoy, University of North Carolina at Chapel Hill
Interv&wed 21 high-functioning adults with autism and 20 mildly to moderately mentally retarded adults without autism about sexuality and dating. Sexual knowledge and interest were assessed by a sexuality vocabulary checklist and a multiple-choice questionnaire. Group differences were found in experience, with more sexual experiences among the mentally retarded adults, but not in knowledge or interest. In both groups IQ was positively correlated with knowledge scores and males had significantly greater interest in sexuality than females. Implications of sex and group differences are discussed.
The sexuality of adults with autism has not been adequately addressed in the literature. This omission may reflect both the common conception that autism is a childhood syndrome and our society's reluctance to confront sexual issues. As autistic children grow into adolescence and adulthood and health care professionals learn more about their social problems, concerns about sexuality are becoming unavoidable. More high-functioning autistic adults are now living independently or semi-independently and their needs for assistance in dealing with social relationships are increasing (Ford, 1987; Mesibov, 1982, 1983; Mesibov & Stephens, 1990).
1Address all correspondence to Gary B. Mesibov, Division TEACCH, CB 7180, Medical School Wing E, University of North Carolina, Chapel Hill, North Carolina 27599-7180. 471 0162.3257/91/1200-0471506.50/0 • 1991 PlenumPublishingCorporation
472
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Although there is virtually no empirical information concerning the sexuality of individuals with autism, there have been several publications about the sexuality of individuals who are mentally retarded but not autistic. This information can be useful for those working with autistic adolescents and adults because these two groups have certain similarities: Their life experiences include rejection by peers as children, their schooling is often in special education programs, their ability to understand and process information is limited, and they generally live in institutions, group homes, or with their parents past adolescence. Most of the available information describing mentally retarded people's sexual interests and experiences is in reports from teachers and caretakers. A 1975 survey found that masturbation, prolonged kissing, and sex occurred among some residents in over 70% of the residential institutions studied (Mulhern, 1975). In a more recent study (Brantlinger, 1985), teachers described their mentally retarded students as sexually active with sociosexual problems and still wanting to know more about sexuality. Brantlinger (1988) surveyed 22 teachers who reported that a majority of their students desired social intimacy and sexual relationships. Other studies have investigated the sexual knowledge of mentally retarded individuals. Edmondson, McCombs, and Wish (1979) demonstrated relationships between IQ level, sex, and knowledge about sexuality among mentally retarded people. Robinson (1984) has shown that IQ is a correlate of sexual knowledge but that factors such as place of residence and sex are better predictors. Penny and Chataway (1982) found that knowledge among community-based subjects was higher than among institutionalized subjects and that knowledge scores on a sex vocabulary test were higher for males than for females. This study was designed to learn about the sexual attitudes, experiences, and knowledge of both male and female autistic adults. A comparison group of mild to moderately mentally retarded individuals without autism was included. There were three main hypotheses. 1. On the average, sexual interest among the mentally retarded group would be higher than among the group with autism. Consistent with the literature, the males in each diagnostic group were expected to have higher interest scores than the females. 2. Experience would be greater for members of the mentally retarded group. The males within each diagnostic group were expected to have more experience than the females. 3. IQ would not significantly correlate with knowledge scores; life experiences were expected to be the mediating variable.
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473
METHOD
Subjects Forty-one subjects from across the state of North Carolina were interviewed in this study; 21 were high-functioning autistic adults and 20 were mildly to moderately mentally retarded adults without autism. All subjects had been evaluated by psychologists either during or after their school careers and given their current diagnosis. Autistic subjects were also assessed using the Childhood Autism Rating Scale and were autistic according to these criteria as applied to adolescents and adults (Mesibov, Schopler, Schaffer, & Michal, 1989; Schopler, Reichler, & Renner, 1988). All subjects were in contact with mental health organizations designed specifically to deal with the problems of autistic or mentally retarded people. From the autistic group 11 subjects were male (mean IQ = 84.4, SD = 8.1; mean age = 27 years, 4 months, SD = 5.4) and 10 were female (mean IQ = 73.9, SD = 15.8; mean age = 27 years, 3 months, SD = 5.9). From the mentally retarded group 10 were male (mean IQ = 56.9, SD = 11.1; mean age = 27 years, 11 months, SD = 5.9) and 10 were female (mean IQ = 54.6, SD = 13.4; mean age = 27 years, 5 months, SD = 7.8). The most recent IQ score was used from each client's record. No IQ cutoff was specified during the subject selection process. The experimenter contacted mental health care professionals and asked them to recommend clients who functioned with some degree of independence either at home or on a job and could understand the content of the questionnaire. Several contacted clients lived in group homes with elaborate and time-consuming approval processes for studies of this kind. These subjects were not included in the study. Of the total subject pool, 17% were still attending high school and 51% had completed high school (61% of these had received some kind of diploma); 71% held either part-time or full-time jobs in the community, and 22% were in sheltered workshops; 22% were living in supervised apartments, 34% in group homes, and 44% at home with their parents. Residential status was similar between the two groups except that fewer clients with autism (both male and female) were in apartment programs, and more female clients with autism were living at home with their parents than were female clients in the other group.
Materials The interview questionnaire was divided into two sections: a sexuality vocabulary test and a multiple-choice questionnaire that assessed experi-
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ences and attitudes about sexuality and dating (see Appendix). Both instruments were adapted from tests used in previous studies with mentally retarded subjects (Penny & Chataway, 1982; Wilcox & Udry, 1986). Thirty-one questions were selected from the more than 100 items used by Wilcox and Udry in their 1986 study's section on sexual concepts and experiences. Questions were selected for their clarity, directness, and lack of redundancy. The knowledge vocabulary test was scored using a 3-point scale: 2 points for a detailed correct answer, 1 for a general correct answer, and 0 for a "don't know" response or an incorrect answer. Each subject's knowledge score was the sum of their points on the vocabulary test. The multiple-choice questionnaire was divided into two sections: Section 1 (7 questions) assessed sexual and dating experiences, and Section 2 (6 questions) assessed interest in sexual activities.
Procedure
After receiving information on a client from the mental health care professional, the client and legal guardian were contacted. (Several clients were their own guardians.) The nature of the questionnaire was explained either by letter or by telephone. All but 2 of the clients and legal guardians consented, and interviews were then arranged. Most interviews took place in clients' homes. A consent form was read, thoroughly explained to each client, and signed. The interviewer then explained that she wanted to ask about things like holding hands, kissing, and hugging a boy/girl. Two examples from the questionnaire were given. It was emphasized that the participant did not have to answer any questions if he or she did not want to. Demographic data were collected next about place of residence, jobs, and religion. This part of the interview was designed to relax the participants and give them time to feel more comfortable with the interviewer. The vocabulary checklist was presented after the demographic data were collected. For each word on the anatomy list, three questions were asked: (1) Is this found on the male or female? (2) Where is it found on the body? (3) What is its function? Whenever Question 1 was answered incorrectly, the interviewer proceeded to the next word. The other terms on the checklist involved concepts and bodily functions relating to human sexuality and reproduction. For each of these, the interviewer first said the word aloud and then asked "What does this word mean?" To get more detailed information, probing questions were asked. For example, probing questions about menstruation might be: (a) Does
Sexual Attitudes
475
menstruation occur in a man or in a woman? (b) Exactly what happens to her body? (c) How often does this happen? Once the vocabulary list was completed, the interviewer read the multiple-choice questions and answers and gave the client a chance to select a response. The multiple-choice questions assessed experience and interest in activities such as holding hands, kissing, necking, and masturbation.
RESULTS Reliability was computed on the knowledge test scores by dividing the number of answers scored identically by two independent raters (the interviewer and a second rater who reviewed the response protocols of all 41 subjects) by that number plus the number of items in disagreement and multiplying the result by 100. Using this procedure the interrater reliability coefficient was .98. The reason for such a high correlation is that each item was scored on a 3-point scale and there were many "don't know" responses receiving the obvious score of zero. A 2(Gender) x 2(Group) analysis of variance (ANOVA) was performed on the sexual interest scores. A main effect of gender, F(1, 37) = 7.48, p < .01, was found and diagnostic group approached significance, F(1, 37) = 3.65, p < .07. The interaction between gender and diagnostic group was nonsignificant (Table I). A 2(Gender x 2(Group) ANOVA was also done on the sexual experience scores. There was no main effect of gender but the effect of diagnostic group was significant, F(1, 37) = 15.5, p < .001. The interaction between gender and group approached significance, F(1, 37) = 3.06, p < .09 (Table I). Descriptive data on sexual experiences are also presented (Table II). Gender and diagnostic group differences for knowledge were computed by a 2(Gender) x 2(Group) ANOVA. This analysis revealed no significant main effects or interactions (Table I). To determine if there were any effects of IQ on the knowledge scores, a Pearson product-moment correlation was done. This analysis showed a positive correlation between IQ and knowledge score (r = .42, p < .01). Two additional Pearson productmoment correlations were done showing that knowledge was not correlated with interest (r = .06, ns.) or experience (r = .13, ns.).
DISCUSSION The main effects in this study provide new information about sexuality and autism. Males were more interested in dating and sexuality than re-
476
Ousley and Mesibov Table I. Mean Ratings of Interest, Experience, and Knowledge Scores for Mentally Retarded and Autistic Subjects Autistic
Mentally retarded
Male Interest Experience Knowledge
18.9 8.2 0.85
23.1 14.5 0.98
21.0 11.4 0.92
Female Interest Experience Knowledge
15.8 10.4 1.05
17.5 12.8 0.83
16.7 11.6 0.94
Total Interest Experience Knowledge
17.4 9.3 0.95
20.3 13.7 0.91
Total
Table II. Percentage of Different Groups Who Had Experienced the Following Sexual Activities More Than Two Times
Sexual activity
Autistic males
Autistic females
Mentally retarded males
Mentally retarded females
Masturbation Kissing nonrelative of opposite sex Hugging and kissing for a long time Gone further than hugging and kissing
55 9 0 0
20 40 20 10
60 70 50 50
30 60 50 20
males in both groups and autistic subjects had less experience with sexuality than mentally retarded subjects without autism. Although there were no main effects of sexual knowledge, there was a significant correlation between sexual knowledge and IQ. Hypothesis 1 was partially confirmed for both groups; males in this study were more interested in sexuality than females. Some argue that males in the nonhandicapped population are also more interested in sexuality than females (Darling & Davidson, 1986), reflecting greater acceptance of male sexuality by the general public and more explicit permission for males to pursue their sexual interests. This finding among autistic people, however, questions this explanation. Although less aware of general trends and less responsive to public messages, the autistic males still were more interested than the females in sexuality.
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477
Hypothesis 2 was also partially confirmed. As predicted, the mentally retarded group without autism had more sexual experience than the autistic group, but there was no gender effect on experience. Male and female in both groups reported the same amount of sexual experience. Perhaps there is no gender effect because of two trends negating one another: Handicapped males' greater interest in sexuality motivates them to approach more females whereas handicapped females are approached more frequently by males. Although the amount of experience is equivalent for both sexes, it comprises initiating contacts for the male and being contacted for the female. The data showed significantly more experience for the mentally retarded group than for the autistic group (Tables I and II). This result was expected because of the well-documented social deficits in autism (Schopler & Mesibov, 1986). People with autism have limited experiences with the opposite sex because they do not understand the subtle rules of social interactions (Mesibov, 1984): they do not understand social cues that are communicated with gestures or with implicit language (Paul & Cohen, 1985), they have difficulties interpreting the emotions of others (Hobson, in press), and they are not understood easily because of the idiosyncratic ways in which they express their emotions (Shah & Wing, 1986). Because subtle communications of feelings are important in heterosexual relationships, the deficits of autistic people undoubtedly contribute to their lack of dating and sexual experience. Hypothesis 3 was not confirmed; IQ was a good predictor of sexual knowledge in both groups. A disagreement about this issue persists in the literature. These results suggest that understanding or actively participating in sexual activities is not an essential prerequisite for correctly defining sexual terms. With the exception of masturbation, the amount of sexual activity that autistic individuals, especially males, engaged in was quite limited (Table II). Considering the active interest in sexual activities found by this study, there may be considerable sexual frustration among males with autism. This study revealed a greater interest in sexuality by individuals with autism than the literature suggests (Schopler & Mesibov, 1986). More should be known about these interests so that professionals can respond more intelligently and appropriately. Sex education programs for people with autism will be more effective if they are based on what these people know, want, and need. A concern of some parents is that teaching individuals with autism about sexuality might increase their interest and, in turn, cause additional problems. The results of this study do not support that concern. Knowledge did not correlate with either interest or experience. Information does not
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Ousley and Mesibov
stimulate interest but is an important way of helping already interested people with autism to meet existing needs. This study also provided some interesting anecdotes that tell us something about autistic people and their sexuality. One autistic male had wallpapered his room with Playboy pictures and was well-informed about female anatomy. Although this client had a relatively high score on the knowledge test and was interested in having a relationship with a female, he had few social skills and virtually no social contacts. Another subject, in his late 20s, said that he was interested in going out with just one person. When questioned about his past experiences he said that he had never gone out on a date but had once kissed a girl in the second grade. Two of the autistic females received perfect scores on the knowledge test: One had no experience and was not interested in any, and the other had some experience with kissing and was interested in more. This variability in interests was common among the subjects with autism in this study. Even though the female group as a whole expressed less interest in sexuality than the males, there are female individuals with autism who are very interested in having sexual experiences. This study is an important preliminary attempt to examine the attitudes and experiences that autistic and mentally retarded people have in relation to sexuality. All the questions were directed to people with handicaps rather than to their parents or their care providers. This adds an important perspective because more and more handicapped individuals are living in independent apartments or group homes, are taking responsibility for themselves, and are making their own decisions. If we are to help them make the most of these new opportunities, we must understand how they experience the world and what they see as important.
APPENDIX The Interview Questionnaire
Vocabulary List Anatomy:
Other terms:
testicles penis sperm breasts vagina
masturbation sexual intercourse orgasm menstruation erection
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Sexual Attitudes
ejaculation V.D. AIDS homosexual pregnancy: Can explain how to get pregnant Can give examples of birth control
uterus
ovary ovum/egg clitoris
Multiple-Choice Sexuality Survey H e r e are some things that you may have done with a girl/boy. Circle the answer that tells how often you have done that thing. Note: The interviewer will read either boy or girl depending on the sex of the subject. 1.
G o n e out A. I have B. I have C. I have
2.
Held hands with a girl/boy. A. I have never done this. B. I have done this only 1 or 2 times. C. I have done this more than 2 times.
3.
Put my arm around a girl/boy or a girl/boy put her/his ann around me. A. I have never done this. B. I have done this only 1 or 2 times. C. I have done this more than 2 times.
4.
Kissed a girl/boy. A. I have never done this. B. I have done this only 1 or 2 times. C. I have done this more than 2 times.
5.
Necked (hugged and kissed a girl/boy for a long time). A. I have never done this. B. I have done this 1 or 2 times. C. I have done this more than 2 times. G o n e further than necking (this means doing more than kissing and hugging). A. I have never done this. B. I have done this only 1 or 2 times. C. I have done this more than 2 times.
6.
alone with a girl/boy. never done this. done this only 1 or 2 times. done this more than 2 times.
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7.
Masturbated (this means playing with your penis until it gets hard/this means rubbing your breasts or clitoris for pleasure). A. I have never done this. B. I rarely do this. C. I sometimes do this. D. I often do this.
How much do you like or think you would like: 1.
Going out alone with a girl/boy. A. Like a lot. B. Like a little. C. Do not like. D. Do not like at all.
2.
Holding hands with a girl/boy. A. Like a lot. B. Like a little. C. Do not like. D. Do not like at all.
3.
Putting your arm around a girl/boy. A. Like a lot. B. Like a little. C. Do not like. D. Do not like at all.
4.
Kissing a girl/boy. A. Like a lot. B. Like a little. C. Do not like. D. Do not like at all.
5.
Necking with a girl/boy (kissing and hugging for a long time). A. Like a lot. B. Like a little. C. Do not like. D. Do not like at all. Going further than necking with a girl/boy (doing more than kissing and hugging). A. Like a lot. B. Like a little. C. Do not like. D. Do not like at all.
6.
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REFERENCES Brantlinger, E. (1985). Mildly mentally retarded secondary students' information about and attitudes toward sexuality and sexuality education. Education and Training of the Mentally Retarded, 20, 99-108. Brantlinger, E. (1988). Teachers' perceptions of the parenting abilities of their secondary students with mild mental retardation. Remedial and Special Education, 9, 31-43. Darling, C. A., & Davidson, J. K. (1986). Coitally active university students: Sexual behaviors, concerns, and challenges. Adolescence, 21, 403-419. Edmonson, B., McCombs, K., & Wish, J. (1979). What retarded adults believe about sex. American Journal of Mental Deficiency, 84, 11-18. Ford, A. (1987). Sex education for individuals with autism: Structuring information and opportunities. In D. Cohen, A. Donnellan, & R. Paul (Eds.), Handbook of autism andpervasive developmental disorders (pp. 430-439). New York: Wiley. Hobson, P. (in press). Social perception in autism. In E, Schopler & G. B. Mesibov (Eds.), High-functioning individuals with autism. New York: Plenum Press. Mesibov, G. B. (1982, July). Sex education for people with autism: Matchhlg programs to levels of functioning. Paper presented at the meeting of the National Society for Children and Adults with Autism, Omaha, NE. Mesibov, G. B. (1983). Current perspectives and issues in autism and adolescence. In E. Schopler & G. B. Mesibov (Eds.), Autism in adolescents and adults (pp. 37-53). New York: Plenum Press. Mesibov, G. B. (1984). Social skills training with verbal autistic adolescents and adults: A program model. Journal of Autism and Developmental Disorders, 14, 395-404. Mesibov, G. B., Schopler, E., Schaffer, B., & Michal, N. (1989). Use of the Childhood Autism Rating Scale with autistic adolescents and adults. Journal of the American Academy of Child and Adolescent Psychiatry, 28, 538-541. Mesibov, G. B., & Stephens, J. (1990). Perceptions of popularity among a group of high-functioning adults with autism. Journal of Autism and Developmental Disorders, 20, 33-43. Mulhern, T. (1975). Survey of reported sexual behavior and policies characterizing residential facilities for retarded citizens. American Journal of Mental Deficiency, 79, 670-673. Paul, R., & Cohen, D. (1985). Comprehension of indirect requests in adults with autistic disorders and mental retardation. Journal of Speech and Hearing Research, 28, 475-479. Penny, R., & Chataway, J. (1982). Sex education for mentally retarded persons. Australia and New Zealand Journal of Developmental Disabilities, 8, 204-212. Robinson, S. (1984). Effects of a sex education program on intellectually handicapped adults. Australia and New Zealand Journal of Developmental Disabilities, 10, 21-26. Schopler, E., & Mesibov, G. B. (Eds.). (1986). Social behavior b~ autism. New York: Plenum Press. Schopler, E., Reichler, R. J., & Renner, B. R. (1988). The childhood autism rating scale (CARS). Los Angeles: Western Psychological Services. Shah, S., & Wing, L. (1986). Cognitive impairments affecting social behavior in autism. In E. Schopler & G. B. Mesibov (Eds.), Social behavior bl atttism (pp. 153-169). New York: Plenum Press. Wilcox, S., & Udry, R. (1986). Autism and accuracy in adolescent perceptions of friends' sexual attitudes and behavior. Journal of Applied Social Psycholosy, 16, 361-374.
Sexual Attitudes and Knowledge of HighFunctioning Adolescents and Adults with Autism Opal Y. Ousley and Gary B. Mesibov 1 Division TEACCH, Department of Psychiaoy, University of North Carolina at Chapel Hill
Interv&wed 21 high-functioning adults with autism and 20 mildly to moderately mentally retarded adults without autism about sexuality and dating. Sexual knowledge and interest were assessed by a sexuality vocabulary checklist and a multiple-choice questionnaire. Group differences were found in experience, with more sexual experiences among the mentally retarded adults, but not in knowledge or interest. In both groups IQ was positively correlated with knowledge scores and males had significantly greater interest in sexuality than females. Implications of sex and group differences are discussed.
The sexuality of adults with autism has not been adequately addressed in the literature. This omission may reflect both the common conception that autism is a childhood syndrome and our society's reluctance to confront sexual issues. As autistic children grow into adolescence and adulthood and health care professionals learn more about their social problems, concerns about sexuality are becoming unavoidable. More high-functioning autistic adults are now living independently or semi-independently and their needs for assistance in dealing with social relationships are increasing (Ford, 1987; Mesibov, 1982, 1983; Mesibov & Stephens, 1990).
1Address all correspondence to Gary B. Mesibov, Division TEACCH, CB 7180, Medical School Wing E, University of North Carolina, Chapel Hill, North Carolina 27599-7180. 471 0162.3257/91/1200-0471506.50/0 • 1991 PlenumPublishingCorporation
472
Ousley and Mesibov
Although there is virtually no empirical information concerning the sexuality of individuals with autism, there have been several publications about the sexuality of individuals who are mentally retarded but not autistic. This information can be useful for those working with autistic adolescents and adults because these two groups have certain similarities: Their life experiences include rejection by peers as children, their schooling is often in special education programs, their ability to understand and process information is limited, and they generally live in institutions, group homes, or with their parents past adolescence. Most of the available information describing mentally retarded people's sexual interests and experiences is in reports from teachers and caretakers. A 1975 survey found that masturbation, prolonged kissing, and sex occurred among some residents in over 70% of the residential institutions studied (Mulhern, 1975). In a more recent study (Brantlinger, 1985), teachers described their mentally retarded students as sexually active with sociosexual problems and still wanting to know more about sexuality. Brantlinger (1988) surveyed 22 teachers who reported that a majority of their students desired social intimacy and sexual relationships. Other studies have investigated the sexual knowledge of mentally retarded individuals. Edmondson, McCombs, and Wish (1979) demonstrated relationships between IQ level, sex, and knowledge about sexuality among mentally retarded people. Robinson (1984) has shown that IQ is a correlate of sexual knowledge but that factors such as place of residence and sex are better predictors. Penny and Chataway (1982) found that knowledge among community-based subjects was higher than among institutionalized subjects and that knowledge scores on a sex vocabulary test were higher for males than for females. This study was designed to learn about the sexual attitudes, experiences, and knowledge of both male and female autistic adults. A comparison group of mild to moderately mentally retarded individuals without autism was included. There were three main hypotheses. 1. On the average, sexual interest among the mentally retarded group would be higher than among the group with autism. Consistent with the literature, the males in each diagnostic group were expected to have higher interest scores than the females. 2. Experience would be greater for members of the mentally retarded group. The males within each diagnostic group were expected to have more experience than the females. 3. IQ would not significantly correlate with knowledge scores; life experiences were expected to be the mediating variable.
Sexual Attitudes
473
METHOD
Subjects Forty-one subjects from across the state of North Carolina were interviewed in this study; 21 were high-functioning autistic adults and 20 were mildly to moderately mentally retarded adults without autism. All subjects had been evaluated by psychologists either during or after their school careers and given their current diagnosis. Autistic subjects were also assessed using the Childhood Autism Rating Scale and were autistic according to these criteria as applied to adolescents and adults (Mesibov, Schopler, Schaffer, & Michal, 1989; Schopler, Reichler, & Renner, 1988). All subjects were in contact with mental health organizations designed specifically to deal with the problems of autistic or mentally retarded people. From the autistic group 11 subjects were male (mean IQ = 84.4, SD = 8.1; mean age = 27 years, 4 months, SD = 5.4) and 10 were female (mean IQ = 73.9, SD = 15.8; mean age = 27 years, 3 months, SD = 5.9). From the mentally retarded group 10 were male (mean IQ = 56.9, SD = 11.1; mean age = 27 years, 11 months, SD = 5.9) and 10 were female (mean IQ = 54.6, SD = 13.4; mean age = 27 years, 5 months, SD = 7.8). The most recent IQ score was used from each client's record. No IQ cutoff was specified during the subject selection process. The experimenter contacted mental health care professionals and asked them to recommend clients who functioned with some degree of independence either at home or on a job and could understand the content of the questionnaire. Several contacted clients lived in group homes with elaborate and time-consuming approval processes for studies of this kind. These subjects were not included in the study. Of the total subject pool, 17% were still attending high school and 51% had completed high school (61% of these had received some kind of diploma); 71% held either part-time or full-time jobs in the community, and 22% were in sheltered workshops; 22% were living in supervised apartments, 34% in group homes, and 44% at home with their parents. Residential status was similar between the two groups except that fewer clients with autism (both male and female) were in apartment programs, and more female clients with autism were living at home with their parents than were female clients in the other group.
Materials The interview questionnaire was divided into two sections: a sexuality vocabulary test and a multiple-choice questionnaire that assessed experi-
474
Ousley and Mesibov
ences and attitudes about sexuality and dating (see Appendix). Both instruments were adapted from tests used in previous studies with mentally retarded subjects (Penny & Chataway, 1982; Wilcox & Udry, 1986). Thirty-one questions were selected from the more than 100 items used by Wilcox and Udry in their 1986 study's section on sexual concepts and experiences. Questions were selected for their clarity, directness, and lack of redundancy. The knowledge vocabulary test was scored using a 3-point scale: 2 points for a detailed correct answer, 1 for a general correct answer, and 0 for a "don't know" response or an incorrect answer. Each subject's knowledge score was the sum of their points on the vocabulary test. The multiple-choice questionnaire was divided into two sections: Section 1 (7 questions) assessed sexual and dating experiences, and Section 2 (6 questions) assessed interest in sexual activities.
Procedure
After receiving information on a client from the mental health care professional, the client and legal guardian were contacted. (Several clients were their own guardians.) The nature of the questionnaire was explained either by letter or by telephone. All but 2 of the clients and legal guardians consented, and interviews were then arranged. Most interviews took place in clients' homes. A consent form was read, thoroughly explained to each client, and signed. The interviewer then explained that she wanted to ask about things like holding hands, kissing, and hugging a boy/girl. Two examples from the questionnaire were given. It was emphasized that the participant did not have to answer any questions if he or she did not want to. Demographic data were collected next about place of residence, jobs, and religion. This part of the interview was designed to relax the participants and give them time to feel more comfortable with the interviewer. The vocabulary checklist was presented after the demographic data were collected. For each word on the anatomy list, three questions were asked: (1) Is this found on the male or female? (2) Where is it found on the body? (3) What is its function? Whenever Question 1 was answered incorrectly, the interviewer proceeded to the next word. The other terms on the checklist involved concepts and bodily functions relating to human sexuality and reproduction. For each of these, the interviewer first said the word aloud and then asked "What does this word mean?" To get more detailed information, probing questions were asked. For example, probing questions about menstruation might be: (a) Does
Sexual Attitudes
475
menstruation occur in a man or in a woman? (b) Exactly what happens to her body? (c) How often does this happen? Once the vocabulary list was completed, the interviewer read the multiple-choice questions and answers and gave the client a chance to select a response. The multiple-choice questions assessed experience and interest in activities such as holding hands, kissing, necking, and masturbation.
RESULTS Reliability was computed on the knowledge test scores by dividing the number of answers scored identically by two independent raters (the interviewer and a second rater who reviewed the response protocols of all 41 subjects) by that number plus the number of items in disagreement and multiplying the result by 100. Using this procedure the interrater reliability coefficient was .98. The reason for such a high correlation is that each item was scored on a 3-point scale and there were many "don't know" responses receiving the obvious score of zero. A 2(Gender) x 2(Group) analysis of variance (ANOVA) was performed on the sexual interest scores. A main effect of gender, F(1, 37) = 7.48, p < .01, was found and diagnostic group approached significance, F(1, 37) = 3.65, p < .07. The interaction between gender and diagnostic group was nonsignificant (Table I). A 2(Gender x 2(Group) ANOVA was also done on the sexual experience scores. There was no main effect of gender but the effect of diagnostic group was significant, F(1, 37) = 15.5, p < .001. The interaction between gender and group approached significance, F(1, 37) = 3.06, p < .09 (Table I). Descriptive data on sexual experiences are also presented (Table II). Gender and diagnostic group differences for knowledge were computed by a 2(Gender) x 2(Group) ANOVA. This analysis revealed no significant main effects or interactions (Table I). To determine if there were any effects of IQ on the knowledge scores, a Pearson product-moment correlation was done. This analysis showed a positive correlation between IQ and knowledge score (r = .42, p < .01). Two additional Pearson productmoment correlations were done showing that knowledge was not correlated with interest (r = .06, ns.) or experience (r = .13, ns.).
DISCUSSION The main effects in this study provide new information about sexuality and autism. Males were more interested in dating and sexuality than re-
476
Ousley and Mesibov Table I. Mean Ratings of Interest, Experience, and Knowledge Scores for Mentally Retarded and Autistic Subjects Autistic
Mentally retarded
Male Interest Experience Knowledge
18.9 8.2 0.85
23.1 14.5 0.98
21.0 11.4 0.92
Female Interest Experience Knowledge
15.8 10.4 1.05
17.5 12.8 0.83
16.7 11.6 0.94
Total Interest Experience Knowledge
17.4 9.3 0.95
20.3 13.7 0.91
Total
Table II. Percentage of Different Groups Who Had Experienced the Following Sexual Activities More Than Two Times
Sexual activity
Autistic males
Autistic females
Mentally retarded males
Mentally retarded females
Masturbation Kissing nonrelative of opposite sex Hugging and kissing for a long time Gone further than hugging and kissing
55 9 0 0
20 40 20 10
60 70 50 50
30 60 50 20
males in both groups and autistic subjects had less experience with sexuality than mentally retarded subjects without autism. Although there were no main effects of sexual knowledge, there was a significant correlation between sexual knowledge and IQ. Hypothesis 1 was partially confirmed for both groups; males in this study were more interested in sexuality than females. Some argue that males in the nonhandicapped population are also more interested in sexuality than females (Darling & Davidson, 1986), reflecting greater acceptance of male sexuality by the general public and more explicit permission for males to pursue their sexual interests. This finding among autistic people, however, questions this explanation. Although less aware of general trends and less responsive to public messages, the autistic males still were more interested than the females in sexuality.
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Hypothesis 2 was also partially confirmed. As predicted, the mentally retarded group without autism had more sexual experience than the autistic group, but there was no gender effect on experience. Male and female in both groups reported the same amount of sexual experience. Perhaps there is no gender effect because of two trends negating one another: Handicapped males' greater interest in sexuality motivates them to approach more females whereas handicapped females are approached more frequently by males. Although the amount of experience is equivalent for both sexes, it comprises initiating contacts for the male and being contacted for the female. The data showed significantly more experience for the mentally retarded group than for the autistic group (Tables I and II). This result was expected because of the well-documented social deficits in autism (Schopler & Mesibov, 1986). People with autism have limited experiences with the opposite sex because they do not understand the subtle rules of social interactions (Mesibov, 1984): they do not understand social cues that are communicated with gestures or with implicit language (Paul & Cohen, 1985), they have difficulties interpreting the emotions of others (Hobson, in press), and they are not understood easily because of the idiosyncratic ways in which they express their emotions (Shah & Wing, 1986). Because subtle communications of feelings are important in heterosexual relationships, the deficits of autistic people undoubtedly contribute to their lack of dating and sexual experience. Hypothesis 3 was not confirmed; IQ was a good predictor of sexual knowledge in both groups. A disagreement about this issue persists in the literature. These results suggest that understanding or actively participating in sexual activities is not an essential prerequisite for correctly defining sexual terms. With the exception of masturbation, the amount of sexual activity that autistic individuals, especially males, engaged in was quite limited (Table II). Considering the active interest in sexual activities found by this study, there may be considerable sexual frustration among males with autism. This study revealed a greater interest in sexuality by individuals with autism than the literature suggests (Schopler & Mesibov, 1986). More should be known about these interests so that professionals can respond more intelligently and appropriately. Sex education programs for people with autism will be more effective if they are based on what these people know, want, and need. A concern of some parents is that teaching individuals with autism about sexuality might increase their interest and, in turn, cause additional problems. The results of this study do not support that concern. Knowledge did not correlate with either interest or experience. Information does not
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stimulate interest but is an important way of helping already interested people with autism to meet existing needs. This study also provided some interesting anecdotes that tell us something about autistic people and their sexuality. One autistic male had wallpapered his room with Playboy pictures and was well-informed about female anatomy. Although this client had a relatively high score on the knowledge test and was interested in having a relationship with a female, he had few social skills and virtually no social contacts. Another subject, in his late 20s, said that he was interested in going out with just one person. When questioned about his past experiences he said that he had never gone out on a date but had once kissed a girl in the second grade. Two of the autistic females received perfect scores on the knowledge test: One had no experience and was not interested in any, and the other had some experience with kissing and was interested in more. This variability in interests was common among the subjects with autism in this study. Even though the female group as a whole expressed less interest in sexuality than the males, there are female individuals with autism who are very interested in having sexual experiences. This study is an important preliminary attempt to examine the attitudes and experiences that autistic and mentally retarded people have in relation to sexuality. All the questions were directed to people with handicaps rather than to their parents or their care providers. This adds an important perspective because more and more handicapped individuals are living in independent apartments or group homes, are taking responsibility for themselves, and are making their own decisions. If we are to help them make the most of these new opportunities, we must understand how they experience the world and what they see as important.
APPENDIX The Interview Questionnaire
Vocabulary List Anatomy:
Other terms:
testicles penis sperm breasts vagina
masturbation sexual intercourse orgasm menstruation erection
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ejaculation V.D. AIDS homosexual pregnancy: Can explain how to get pregnant Can give examples of birth control
uterus
ovary ovum/egg clitoris
Multiple-Choice Sexuality Survey H e r e are some things that you may have done with a girl/boy. Circle the answer that tells how often you have done that thing. Note: The interviewer will read either boy or girl depending on the sex of the subject. 1.
G o n e out A. I have B. I have C. I have
2.
Held hands with a girl/boy. A. I have never done this. B. I have done this only 1 or 2 times. C. I have done this more than 2 times.
3.
Put my arm around a girl/boy or a girl/boy put her/his ann around me. A. I have never done this. B. I have done this only 1 or 2 times. C. I have done this more than 2 times.
4.
Kissed a girl/boy. A. I have never done this. B. I have done this only 1 or 2 times. C. I have done this more than 2 times.
5.
Necked (hugged and kissed a girl/boy for a long time). A. I have never done this. B. I have done this 1 or 2 times. C. I have done this more than 2 times. G o n e further than necking (this means doing more than kissing and hugging). A. I have never done this. B. I have done this only 1 or 2 times. C. I have done this more than 2 times.
6.
alone with a girl/boy. never done this. done this only 1 or 2 times. done this more than 2 times.
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7.
Masturbated (this means playing with your penis until it gets hard/this means rubbing your breasts or clitoris for pleasure). A. I have never done this. B. I rarely do this. C. I sometimes do this. D. I often do this.
How much do you like or think you would like: 1.
Going out alone with a girl/boy. A. Like a lot. B. Like a little. C. Do not like. D. Do not like at all.
2.
Holding hands with a girl/boy. A. Like a lot. B. Like a little. C. Do not like. D. Do not like at all.
3.
Putting your arm around a girl/boy. A. Like a lot. B. Like a little. C. Do not like. D. Do not like at all.
4.
Kissing a girl/boy. A. Like a lot. B. Like a little. C. Do not like. D. Do not like at all.
5.
Necking with a girl/boy (kissing and hugging for a long time). A. Like a lot. B. Like a little. C. Do not like. D. Do not like at all. Going further than necking with a girl/boy (doing more than kissing and hugging). A. Like a lot. B. Like a little. C. Do not like. D. Do not like at all.
6.
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REFERENCES Brantlinger, E. (1985). Mildly mentally retarded secondary students' information about and attitudes toward sexuality and sexuality education. Education and Training of the Mentally Retarded, 20, 99-108. Brantlinger, E. (1988). Teachers' perceptions of the parenting abilities of their secondary students with mild mental retardation. Remedial and Special Education, 9, 31-43. Darling, C. A., & Davidson, J. K. (1986). Coitally active university students: Sexual behaviors, concerns, and challenges. Adolescence, 21, 403-419. Edmonson, B., McCombs, K., & Wish, J. (1979). What retarded adults believe about sex. American Journal of Mental Deficiency, 84, 11-18. Ford, A. (1987). Sex education for individuals with autism: Structuring information and opportunities. In D. Cohen, A. Donnellan, & R. Paul (Eds.), Handbook of autism andpervasive developmental disorders (pp. 430-439). New York: Wiley. Hobson, P. (in press). Social perception in autism. In E, Schopler & G. B. Mesibov (Eds.), High-functioning individuals with autism. New York: Plenum Press. Mesibov, G. B. (1982, July). Sex education for people with autism: Matchhlg programs to levels of functioning. Paper presented at the meeting of the National Society for Children and Adults with Autism, Omaha, NE. Mesibov, G. B. (1983). Current perspectives and issues in autism and adolescence. In E. Schopler & G. B. Mesibov (Eds.), Autism in adolescents and adults (pp. 37-53). New York: Plenum Press. Mesibov, G. B. (1984). Social skills training with verbal autistic adolescents and adults: A program model. Journal of Autism and Developmental Disorders, 14, 395-404. Mesibov, G. B., Schopler, E., Schaffer, B., & Michal, N. (1989). Use of the Childhood Autism Rating Scale with autistic adolescents and adults. Journal of the American Academy of Child and Adolescent Psychiatry, 28, 538-541. Mesibov, G. B., & Stephens, J. (1990). Perceptions of popularity among a group of high-functioning adults with autism. Journal of Autism and Developmental Disorders, 20, 33-43. Mulhern, T. (1975). Survey of reported sexual behavior and policies characterizing residential facilities for retarded citizens. American Journal of Mental Deficiency, 79, 670-673. Paul, R., & Cohen, D. (1985). Comprehension of indirect requests in adults with autistic disorders and mental retardation. Journal of Speech and Hearing Research, 28, 475-479. Penny, R., & Chataway, J. (1982). Sex education for mentally retarded persons. Australia and New Zealand Journal of Developmental Disabilities, 8, 204-212. Robinson, S. (1984). Effects of a sex education program on intellectually handicapped adults. Australia and New Zealand Journal of Developmental Disabilities, 10, 21-26. Schopler, E., & Mesibov, G. B. (Eds.). (1986). Social behavior b~ autism. New York: Plenum Press. Schopler, E., Reichler, R. J., & Renner, B. R. (1988). The childhood autism rating scale (CARS). Los Angeles: Western Psychological Services. Shah, S., & Wing, L. (1986). Cognitive impairments affecting social behavior in autism. In E. Schopler & G. B. Mesibov (Eds.), Social behavior bl atttism (pp. 153-169). New York: Plenum Press. Wilcox, S., & Udry, R. (1986). Autism and accuracy in adolescent perceptions of friends' sexual attitudes and behavior. Journal of Applied Social Psycholosy, 16, 361-374.
