PII S (99)

Transcription

1 Pergamon Research in Developmental Disabilities, Vol. 20, No. 4, pp , 1999 Copyright 1999 Elsevier Science Ltd Printed in the USA. All rights reserved /99/$ see front matter PII S (99) Construction and Psychometric Properties of Sexuality Scales: Sex Knowledge, Experience, and Needs Scales for People with Intellectual Disabilities (SexKen-ID), People with Physical Disabilities (SexKen-PD), and the General Population (SexKen-GP) Marita P. McCabe, Robert A. Cummins, and Amanda A. Deeks School of Psychology, Deakin University, Burwood, Victoria, Australia This study reports on the development and assessment of the psychometric properties of three measures to assess sexual knowledge, experience, feelings, and needs. The first was designed to assess the Sexual Knowledge, Experience, Feelings, and Needs of people with mild intellectual disabilities (SexKen-ID). The two parallel measures were designed to assess the same areas of sexuality among people with physical disabilities (SexKen-PD) and among the general population (SexKen-GP). The areas of sexuality included in the scales were Friendship, Dating and Intimacy, Marriage, Body Part Identification, Sex and Sex Education, Menstruation, Sexual Interaction, Contraception, Pregnancy, Abortion and Childbirth, Sexually Transmitted Diseases, Masturbation, and Homosexuality. Generation of the items in these scales is described in Studies 1 3. Study 4 describes the evaluation of the psychometric properties of the scales. Sixty-six people with intellectual disabilities, 54 people with physical disabilities, and 100 people from the general population completed the scales. Test-retest reliabilities were also calculated with 30 people with intellectual disabilities, 30 people with physical Address correspondence to: Dr. Marita P. McCabe, FAPS, School of Psychology, Deakin University, 221 Burwood Highway, Burwood, Victoria, Australia maritam@deakin.edu.au. 241

2 242 M. P. McCabe, R. A. Cummins, and A. A. Deeks disabilities, and 30 people from the general population. These data demonstrate the good psychometric properties of the scales and so their simitability for assessing the sexual knowledge, experience, feelings, and needs of people with disability Elsevier Science Ltd Sexuality is an important aspect of the lives of all people, and involves a broad range of behaviors (Murphy, Coleman, & Abel, 1983). Although there seems to be general acceptance of these views for people within the general population, there has been a general reluctance to approve sexual expression among people with disabilities (McCabe, 1993). The difficulties that people have in accepting and valuing sexuality among people with disabilities is exemplified by the lack of assessment instruments to evaluate the sexual knowledge, experience, attitudes, or needs of these people. There are a large number of such instruments that are designed for use among the general population, but not for disabilities groups. This study is concerned with describing the development of a series of instruments that are designed to evaluate the sexuality of people with disabilities as well as people from the general population. Very few studies have involved direct assessment of sexual knowledge, experience, feelings, and needs of people with intellectual disabilities (McCabe & Schreck, 1992). The most comprehensive assessment measure developed to assess sexuality among people with intellectual disability is the Socio-Sexual Knowledge and Attitude Test (SKAT) developed by Wish, McCombs, and Edmonson (1980). Using this test, Edmonson, McCombs, and Wish (1979) evaluated the sexual knowledge of institutionalized and noninstitutionalized adults with moderate and severe intellectual disability. This instrument was designed to allow participants to point to a set of pictures, thus decreasing the need for verbal responses. However, the SKAT measure has the disadvantages of being time consuming, and it requires a high level of skill to administer (Edmonson et al., 1979; Forchuk, Martin, & Griffiths, 1995). The test is also overly complicated in parts, is not exhaustive, contains many value-laden items preventing objective assessment of participants perceptions and needs, and does not contain a detailed examination of sexual activities in which respondents may have engaged. Timmers, DuCharme, and Jacob (1981) developed a less complex survey questionnaire that addressed a wide range of sexual knowledge, experiences, feelings and need areas to assess the sexuality of 25 adult men and women with intellectual disabilities. However, this questionnaire was not in a standardized format and had not been psychometrically evaluated. More recently, Ousley and Mesibov (1991) assessed sexual knowledge and experience using a sexuality vocabulary checklist and a multiple choice questionnaire. However, the range of areas covered by this measure was limited, there was no psychometric evaluation of the measure and there was a limited

3 243 range of questions used in the areas that were examined. McCabe and Cummins (1996) and Whitehouse and McCabe (1997) have evaluated the sexual knowledge, experience, feelings, and needs of people with intellectual disabilities using one of the instruments being evaluated in this paper (the Sexual Knowledge, Experience, Feelings and Needs Scale for people with mild intellectual disabilities (SexKen-ID)). Although SexKen-ID was developed and used to obtain information on the sexuality of people with intellectual disability, the psychometric properties of SexKen-ID had not been evaluated. However, there was strong consistency in the findings of the two studies, and people with mild intellectual disabilities were found to demonstrate low levels of knowledge. Sexual experience of people with intellectual disabilities was also found to be low compared with people in the general population in both studies. Given that people with intellectual disabilities are at risk of sexual exploitation (McCabe, Cummins, & Reid, 1994; McCarthy, 1996), there is a strong need to further develop this measure so that we will obtain a clearer understanding of the level of sexual experience and the place of this experience in the lives of disabled people. Assessment tools need to be broad enough to evaluate a wide range of content areas so that the most appropriate material can be included in sex education programs and participants can receive optimal benefit from these programs. To determine if the areas covered by SexKen-ID were comprehensive, Whitehouse and McCabe (1997) examined the sexual areas identified by people with an intellectual disability in which they needed more information. The areas identified by over half of the participants were a need for more information about contraception, dating, and intimacy. A third of participants expressed a desire to know more about AIDS, homosexuality, marriage, masturbation, and pregnancy. These areas are all included in the SexKen-ID measure. Assessment of sexuality is also a problem among people with a physical disabilities. It is clear that many of the problems experienced by people with intellectual disabilities are also experienced by people with physical disabilities (Cole & Cole, 1993; Sandowski, 1993), and there is also a dearth of assessment measures to evaluate their sexuality. This paper describes the development of a measure which was designed to consist of four in-built and related scales: Sexual Knowledge, Experience, Feelings and Need. So that it is possible to make comparisons between disability groups and the general population, the assessment measure was designed so that it is possible to administrate it to different populations. This resulted in three different forms of the scale: the Sexual Knowledge, Experience, Feelings and Needs Scale for people with mild intellectual disabilities (SexKen-ID), and parallel measures for people with physical disabilities (SexKen-PD), and people from the general population (SexKen-GP).

4 244 M. P. McCabe, R. A. Cummins, and A. A. Deeks STUDY 1: GENERATING ITEMS FOR SexKen This study was concerned with the initial development of the SexKen measures. The major content areas to be covered by SexKen need to be guided by past studies of the sexual knowledge and experience of people with intellectual disability, and also areas of sexual experience included in textbooks on human sexuality (Geer, Heiman & Leitenberg, 1984; Katchadourian, 1985; Schulz, 1988). Areas to be included in the measures were Friendship, Dating and Intimacy, Marriage, Body Part Identification, Sex and Sex Education, Menstruation, Sexual Interaction, Contraception, Pregnancy, Abortion and Childbirth, Sexually Transmitted Diseases, Masturbation, and Homosexuality. Questions needed to be generated to assess the sexual knowledge, experience, feelings, and needs in each of the above areas. Consideration needed to be given to the inclusion of pictures in the measures Sigelman and Budd (1986) found pictures had no effect on response to yes-no questions, but did improve responsiveness to multiple-choice or either-or questions. Guides to the styles of pictures to be used were obtained from texts such as Geer et al. (1984), Katchadourian (1985), and Schulz (1988). People with intellectual disabilities are particularly prone to question response biases (Sigelman et al., 1980; Sigelman, Budd, Spanhel, & Schoenrock 1981a; 1981b; Sigelman, Schoenrock et al., 1981; Sigelman, Budd, Winer, Schoen, & Martin 1982; Sigelman, Winer, & Schoenrock, 1982). Sigelman et al. (1980) caution that as responsiveness and acquiescence are a function of the type of question being asked, the design of questionnaires and interviews is vital to the optimization of responsiveness, reliability, and validity. Rosen, Floor, and Baxter (1974) found participants with intellectual disabilities were more likely than controls to comply with unreasonable instructions and to give consistently affirmative responses to questions. Sigelman et al. (1981b), using an itemreversal technique, found that 40 50% of participants (of varying levels of intellectual disabilities) contradicted themselves by responding yes to both items. They found greater acquiescence on harder, more complex questions, when a question was not understood, and possibly when the correct answer was unknown or not very accessible. Sigelman, Schoenrock et al. (1981) found interviewing produced more valid responses than a questionnaire design for people of moderate and mild intellectual disabilities. They claimed that although yes-no questions elicited more responses, there was a risk of these being invalidated by acquiescence and they claimed that open-ended questions were likely to provide more accurate data. They further reported that ability to respond seems to be optimized by questions that allowed nonverbal responses, for example pointing to pictures. However, there may be a problem with respondents saying little in answer to open-ended questions, because of cognitive and linguistic limitations and/or to limitations of experience in interpersonal communication (Sigelman et al., 1981b; Smith, Valenti-Hein, & Heller, 1985). These issues were important matters to consider

5 245 in the development of the SexKen measure. The initial measure, SexKen-ID, was conducted as an interview. Method Preliminary, free-ranging discussions were held with 25 people with mild intellectual disability (12 males, 13 females) in five groups of five respondents, to determine which areas to cover in the interviews and also the nature of the specific questions to be asked in the interview. All respondents lived independently in the community. Their ages ranged from years (mean age, 24.2 years; SD 4.21). Results and Discussion From these discussions it became apparent that a comprehensive selection of questions was needed to cover all areas fully, as one cannot assume that a correct response to a question generalizes to knowledge of the whole area; nor conversely that an incorrect response to a question necessarily implies overall lack of knowledge of that area. It was also apparent that people with mild intellectual disabilities tended to give brief replies. The interview schedule was therefore designed so that there was some overlap between questions. This allowed similar information to be elicited in different ways, in order to thoroughly assess knowledge, experience, feelings, and needs and to provide an easy to difficult gradation within the sections. To minimize acquiescence in SexKen- ID, the items were kept simple and provided for a variety of acceptable responses. Questions in Sex-Ken were designed to both elicit specific information and so required a fairly direct and brief response (e.g., How often does a woman have a period?); as well as open-ended questions that allow a freer verbal response (What is contraception or birth control?). An advantage of open-ended questions is that they do not limit respondents to alternatives within the investigator s frame of reference or anticipation. Because open-ended questions may not produce a response in all subjects, they need to be followed up by more specific questions. Thus SexKen-ID contains a mixture of open-ended questions (as above), yes-no questions (e.g., Do you need to talk about sex, or not?), yes-no questions followed up by open-ended questions (e.g., Have you ever had sexual contact with someone when you didn t want to? [if yes, followed by the open question: What happened?]), as well as questions using pictures to which subjects can point. A small number of yes-no questions ending in...or not? were retained, with the twofold purpose of granting implicit permission for subjects to say no where there may be strong pressure to acquiesce, and also to inject a conversational tone into the questions. Effort was made to ensure that all questions, and therefore the overall measure, was nonjudgmental. Questions that

6 246 M. P. McCabe, R. A. Cummins, and A. A. Deeks TABLE 1 Sections of SexKen-ID Using Pictures Section of Questionnaire Number of Pictures Nature of Pictures Body part identification 6 Clothed male and female; nude female, front and rear views; nude male, front rear views. Menstruation 1 Sanitary aids: pad, tampon and applicator, tampon for manual insertion. Sexual interaction 4 Clothed hugging; naked touching/hugging; erotic kissing; sexual intercourse. Contraception 2 Pill, diaphragm; condom being put on penis. Pregnancy 2 Pregnant woman; woman giving birth. Masturbation 4 Male and female touching self; male and female touching own genitals. were potentially upsetting were placed toward the middle or end of sections, and of the measure, to capitalize on gradually developed rapport. Pictures were included as an adjunct to questions or as a graphic aid in further exploring the subjects knowledge and experience. During the preliminary, exploratory interviews, they seemed also to serve a function in the development of rapport. Table 1 summarizes the content of the pictures used in the measure. Method STUDY 2: REFINING SEXKEN-ID The draft measure that resulted from the above process was assessed by eight caregivers working with people with intellectual disabilities; four senior academics specializing in sex research and therapy, survey design, special education, and survey analysis; a consulting psychiatrist with experience with people with intellectual disabilities; and a clinical psychologist specializing in sex research and therapy. Results and Discussion Overall reactions to the measure were positive. The main problems raised were those of terminology and concentration, resulting in the use of alternative, colloquial terms where there was no initial understanding of the term used. To address the problem of concentration, the measure was split into three, to be administered as three separate approximately 1-hr interviews. Also doublebarrelled questions were eliminated and the number of items ending in...or not? reduced.

7 247 STUDY 3: PILOTING THE MEASURE Method The SexKen-ID measure was piloted with 30 people (18 males, 12 females ; mean age, years; SD 3.91) with mild intellectual disabilities who had been relocated from institutions into the community in the past 5 years. They were currently living in community housing that had day support from care workers. Results and Discussion These respondents showed good understanding of and response to most of the measure. There did not seem to be a problem with acquiescence, nor any other readily observable systematic response bias. The final version of SexKen-ID that was generated from this series of studies consists of 248 items. Where information is sought on a particular event, the respondents word for that event is determined and then his/her word is used in further questioning. Table 2 presents the item breakdown of the measure, listing the number of items under each of the major scales of Knowledge, Experience, Feelings, and Need; and the total number of items per area. SexKen-ID was structured so that it comprised three separate interviews. The subscales were organized so that they ranged from the least intrusive to the most intrusive subscales in successive interviews. Interview 1 comprised the subscales of Friendship, Dating, and Intimacy, Marriage, and Body Part Identification; Interview 2 comprised Sex and Sex Education, Menstruation, Sexual Interaction, Contraception, and Pregnancy, Abortion, and Childbirth; and Interview 3 comprised Sexually Transmitted Diseases, Masturbation, and Homosexuality. Each interview took about 1 hr to complete. There were knowledge questions at the end of Interviews 1 and 2 to determine whether respondents had sufficient knowledge to proceed to the next interview. No attempt was made to generate equal numbers of items to assess Knowledge, Experience, Feelings, and Need in relation to each subscale. Instead, each subscale contains a different number of questions on Knowledge, Experience, Feelings, and Needs according to the requirements to adequately assess that subscale. To give two examples: i. The area Sexually Transmitted Disease has a range of 11 questions on Knowledge (e.g., What happens to you if you get AIDS? How do you catch sexually transmitted diseases? How can you tell if you have a sexually transmitted disease?); two on Experience (Have you ever had a sexually transmitted disease? [if yes:] What did you do about it?); four on Feelings (How do you feel about getting AIDS? How would you feel about catching a sexually transmitted disease?); and two on Need (Would you like to know more about AIDS? Would you like to know more about sexually transmitted diseases?). ii. The area Sexual Interaction contains 21 questions on Knowledge (What is

8 248 M. P. McCabe, R. A. Cummins, and A. A. Deeks TABLE 2 A Description of the Subscales, Areas and Range of Scores for the Sexual Knowledge, Experience, Feelings and Needs Scale (SexKen-ID, SexKen-PD, SexKen-GP) Subscale Area Range of Scores Friendship (23 items) Knowledge: Experience: Feelings: Needs: Dating and intimacy (16 items) Knowledge: Experience: Feelings: Needs: Marriage (16 items) Knowledge: Experience: 0 Feelings: Needs: Body part identification (21 items) Knowledge: Experience: 0 Feelings: 0 Needs: 0 Sex and sex education (16 items) Knowledge: Experience: Feelings: Needs: Menstruation: (16 items) Knowledge: Experience: Feelings: Needs: Sexual interaction (52 items) Knowledge: Experience: Feelings: Needs: Contraception (19 items) Knowledge: Experience: Feelings: Needs: Pregnancy, abortion, and childbirth (24 items) Knowledge: Experience: 3 Feelings: Needs; Sexually transmitted diseases (19 items) Knowledge: Experience: Feelings: Needs: Masturbation (16 items) Knowledge: Experience: Feelings: Needs: Homosexuality (10 items) Knowledge: Experience: Feelings: Needs:

9 249 sexual intercourse? What happens when a man/woman [separate items asked of both genders] comes/ejaculates/has an orgasm? [phase selection according to gender, and terminology according to knowledge previously ascertained); 15 questions on Experience (Have you kissed anyone on the lips, or not? Has anyone touched or kissed your breasts? [for females only]); 14 on Feelings (How do you feel about being hugged like that? [re: pictures of clothed hugging]. How do you feel about having your breasts touched or kissed? Is it all right to have sexual contact with everyone?); and two on Need (Do you need more information about sexual knowledge? Would you like to know more about unwanted sexual contact?). Questions relating to pictures are all Knowledge questions and usually take the form Tell me about this picture to allow subjects freedom to reply in whatever manner they wish. This approach was deemed preferable to asking What are these people doing? (which would focus attention on an act, rather than general knowledge and feelings about a situation). The questions mostly follow a previous Knowledge question; e.g., What is masturbation?. The presentation of pictures of a male and female masturbating was accompanied by Tell me about this picture. What are these people doing? Respondents are then asked further specific knowledge questions related to each particular subject area. STUDY 4: RELIABILITY DATA ON SEXKEN Parallel forms of SexKen-ID were developed for use among people with physical disabilities (SexKen-PD) and in the general population (SexKen-GP). Both versions of SexKen allow the measure to be completed as a questionnaire. The pictures that are used throughout the measure are attached as an appendix to the back of the questionnaire. The difference between these two versions of SexKen is that a range of questions about the nature, time, duration, and severity of the physical disabilities are included at the beginning of the SexKen-PD measures. Both measures take approximately 1 hr to complete. People with physical disabilities may also complete the interview measure (SexKen-ID) if they are unable to complete the measure by themselves as a questionnaire. Method SexKen-ID, SexKen-PD, and SexKen-GP were used to gather data among 67 people with mild intellectual disabilities (28 males, 32 females; mean age, years; SD 4.81), 60 people with congenital physical disabilities (33 males, 27 females; mean age, years; SD 5.23), and from the general population (40 males, 60 females; mean age, years; SD 5.67). All groups were comprised of people living independently in the community. The people with intellectual and physical disability were recruited from their sheltered workshop. People from the general population responded to an advertisement in a local

10 250 M. P. McCabe, R. A. Cummins, and A. A. Deeks newspaper requesting volunteers to complete a study on sexuality. The majority of the respondents were from an Anglo-Saxon background. People with intellectual disability completed SexKen as an interview measure (three separate interviews) and people with physical disability or from general population completed SexKen as a questionnaire measure (about one hour to complete). All respondents were informed about the nature of the study and volunteered to participate. They were further informed that they could withdraw from the study at any time. Test-retest data have been collected on 30 people in each group (six weeks between testing sessions). Results and Discussion Whether completed as an interview or questionnaire, the experience, feelings and needs items are either yes/no (scored as 1 or 2) responses or are scored on a 5-point Likert scale (ranging from 1 5). Examples of Likert scale responses are never, almost never, sometimes, often, very often or very bad, bad, neutral, good, very good. The knowledge questions are open-ended, with responses scored 0, 1, or 2 depending on the accuracy of the responses. The nature of the acceptable responses for each question was determined through pilot work. Some items are categorical (for example, what do you do with your friends) and do not contribute to the total score. All other items are scored in the same direction. A total score is obtained for each area within each subscale. The range of scores for each subarea and each subscale is listed in Table 2. Table 3 summarizes Coefficient Alpha for each scale within each section of SexKen (total population), SexKen-ID, SexKen-PD, and SexKen-GP. Generally speaking, SexKen demonstrated high levels of internal consistency for each of the subscales for each of the populations. For the needs and feelings dimensions for some of the subscales, the subscale is not as reliable, but this may be attributable to the small number of items in these subscales (generally two to five items). Table 4 summarizes the test-retest reliability for SexKen (total population), SexKen-ID, SexKen-PD, and SexKen-GP. By virtue of the method of construction of SexKen, an attempt has been made to develop a valid measure of sexual knowledge, experience, feelings, and needs. The above findings demonstrate that SexKen is in fact a reliable measure for the assessment of sexuality among people with intellectual disabilities, physical disabilities, and from the general population. Care has been taken in its construction to ensure reliable and valid responses on the items in the scale. The scale provides a comprehensive measure of most areas of sexuality, and assesses the knowledge, experience, feelings, and needs of respondents within each area. It has good internal consistency with both disability groups as well as with the general population and responses have been shown to be stable over time with all groups. To obtain a good understanding of people with disabilities it is important that their responses can be compared with people from the general population. SexKen allows such com-

11 251 TABLE 3 Coefficient Alpha For Each of the Subscales for Total SexKen, SexKen-ID, SexKen-PD, and SexKen-GP Alpha Scale No. of Items Total SexKen SexKen-ID SexKen-PD SexKen-GP Friendship Knowledge 1 Experience Feelings Needs Dating and intimacy Knowledge Experience Feelings Needs Marriage Knowledge Feelings Needs 1 Body part Knowledge Sex/sex education Knowledge 1 Experience Feelings Needs Menstruation Knowledge Feelings 1 Needs 1 Sexual interaction Knowledge Experience Feelings Needs Contraception Knowledge Feelings 1 Needs 1 Pregnancy/childbirth Knowledge Feelings Needs STDs Knowledge Feelings Needs Masturbation Knowledge Feelings Needs 1 Homosexuality Knowledge 1 Feelings Needs 1

12 252 M. P. McCabe, R. A. Cummins, and A. A. Deeks TABLE 4 Test-Retest Reliability For Each of the Subscales for Total SexKen, SexKen-ID, SexKen-PD, and SexKen-GP Test-Retest Correlation Coefficient (r) Scale Total SexKen SexKen-ID SexKen-PD SexKen-GP Friendship Knowledge.60***.53**.78***.62** Experience.74***.60**.81***.75*** Feelings.79***.81***.77***.70*** Needs.79***.80***.75***.79*** Dating and intimacy Knowledge.41*.79*.41*.42* Experience.78***.60**.77***.77*** Feelings.70***.79***.69***.52** Needs.76***.79***.58**.67** Marriage Knowledge.58**.54**.45*.37 Feelings.54**.41*.33.66** Needs.76***.75***.74***.69*** Body Part Knowledge.78***.79***.82***.80*** Sex/sex education Knowledge.64**.23.45*.44* Experience.81***.77***.42*.80*** Feelings.70***.87***.37.76* Needs.68**.71***.49*.78*** Menstruation Knowledge.91***.96***.74***.91*** Feelings.67** *** Needs *.69*** Sexual interaction Knowledge.78***.79***.85***.49* Experience.94***.84***.88***.82*** Feelings.91***.77***.96***.80*** Needs.61**.52*.72***.84*** Contraception Knowledge.88***.91***.84***.42* Feelings.74***.82***.49*.69*** Needs Pregnancy/childbirth Knowledge.86***.80***.71***.72*** Feelings.73***.55*.42*.81*** Needs.68**.72***.42*.68*** STDs Knowledge.76***.68**.77***.51** Feelings.58*.52*.35.83*** Needs.71***.55*.81***.84*** Masturbation Knowledge.70***.78***.72***.69*** Feelings.88***.85***.61**.92*** Needs.90***.95***.83***.85*** Homosexuality Knowledge.77***.73***.64**.82*** Feelings.87***.19.85***.97*** Needs.58*.59**.49*.72*** *p.05; **p.01; ***p.001.

13 253 parisons to be made. No other scale has been developed for use with a range of groups, or covers the broad range of areas covered by SexKen. CONCLUSION SexKen will allow the collection of data on the sexual knowledge, experience, feelings and needs of people with disabilities, so that we can obtain a clearer idea of the difficulties experienced by people with disabilities in these areas. In this way, the areas that need to be covered by sex education programs can be more clearly identified. SexKen can also be used as an assessment tool to evaluate the effectiveness of sex education programs. By evaluating sexual knowledge, experience, feelings, and needs before and after such programs it will be possible to determine the effect of these programs so that they can be modified to more clearly achieved their aims. REFERENCES Cole, S. S., & Cole, T. M. (1993). Sexuality, disability and reproductive issues throughout the lifespan. Sexuality and Disability, 11, Edmonson, B., McCombs, K., & Wish, J. (1979). What retarded adults believe about sex. American Journal of Mental Deficiency, 84, Forchuk, M., Martin, M., & Griffiths, M. (1995). Sexual knowledge interview schedule: Reliability. Journal of Intellectual Disability Research, 39, Geer, J., Heiman, J., & Leitenberg, H. (1984). Human sexuality: Englewood Cliffs, NJ: Prentice Hall. Katchadourian, H. (1985). Fundamentals of human sexuality. 5th Ed. Chicago: Holt, Rinehart, and Winston. McCabe, M. P. (1993). Sex education programs for people with intellectual disabilities: Are they necessary? Mental Retardation, 31, McCabe, M. P., & Cummins, R. A. (1996). The sexual knowledge, experience, feelings and needs of people with mild intellectual disability. Education and Training in Mental Retardation and Development Disabilities, 31, McCabe, M. P., Cummins, R. A., & Reid, S. B. (1994). An empirical study of the sexual abuse of people with intellectual disability. Journal of Sexuality and Disability, 12, McCabe, M. P., & Schreck, A. (1992). Before sex education: An evaluation of the sexual knowledge, experience feelings and needs of people with mild intellectual disabilities. Australia and New Zealand Journal of Developmental Disabilities, 18, McCarthy, M. (1996). The sexual support needs of people with learning disabilities: A profile for sex education. Sexuality and Disability, 14, Murphy, W. D., Coleman, E. M., & Abel, G. G. (1983). Human sexuality in the mentally retarded. In: J.L. Matson & F. Andrasik (Eds.), Treatment issues and innovations in mental retardation. New York: Plenum Press. Ousley, O. Y., & Mesibov, G. B. (1991). Sexual attitudes and knowledge of high functioning adolescents and adults with autism. Journal of Autism and Developmental Disorders, 21, Rosen, M., Floor, L., & Baxter, D. (1974). The institutional personality. British Journal of Mental Subnormality, 17, Sandowski, C. (1993). Responding to the sexual concerns of people with disabilities. Journal of Social Work and Human Sexuality, 8,

14 254 M. P. McCabe, R. A. Cummins, and A. A. Deeks Schulz, D. A. (1988). Human sexuality. Englewood Cliffs, New Jersey: Prentice Hall. Sigelman, C. K., & Budd, E. C. (1986). Pictures as an aid in questioning mentally retarded persons. Rehabilitation Counselling Bulletin, March, Sigelman, C. K., Budd, E. C., Spanhel, C. L., & Schoenrock, C. J. (1981a). Asking questions of retarded persons: A comparison of yes-no and either-or formats. Applied Research in Mental Retardation, 2, Sigelman, C. K., Budd, E. C., Spanhel, C. L., & Schoenrock, C. J. (1981b). When in doubt, say yes: Acquiescence in interviews with mentally retarded persons. Mental Retardation, 19, Sigelman, C. K., Budd, E. C., Winer, J. L., Schoenrock, C. J., & Martin, P. W. (1982). Evaluating alternative techniques of questioning mentally retarded persons. American Journal of Mental Deficiency, 86, Sigelman, C. K., Schoenrock, C. J., Spanhel, C. L., Hromas, S. G., Winer, J. L., Budd, E. C., & Martin, P. W. (1980). Surveying mentally retarded persons: Responsiveness and response validity in three samples. American Journal of Mental Deficiency, 84, Sigelman, C. K., Schoenrock, C. J., Winer, J. L., Spanhel, C. L., Hromas, S. G., Martin, P. W., Budd, E. C., & Bensberg, G. J. (1981). Issues in interviewing mentally retarded persons: An empirical study. In: H. Bruininks, C.E. Meyers, B.B. Sigford, & K.C. Lakin (Eds.), Deinstitutionalization and community adjustment of mentally retarded people. Washington, D.C.: American Association on Mental Deficiency. Sigelman, C. K., Winer, J. L., & Schoenrock, C. J. (1982). The responsiveness of mentally retarded persons to questions. Education and Training of the Mentally Retarded, 17, Smith, D. C., Valenti-Hein, D., & Heller, T. (1985). Interpersonal competence and community adjustment of retarded adults. In: M. Sigman (Ed.), Children with emotional disorders and developmental disabilities. Assessment and treatment. Orlando, FL.: Grune & Stratton. Timmers, R. L., Du Charme, P., & Jacob, G. (1981). Sexual knowledge, attitudes and behavior of developmentally disabled adults living in a normalised apartment setting. Sexuality and Disability, 4, Whitehouse, M. A., & McCabe, M. P. (1997). Sex education programs for people with intellectual disability: How effective are they? Education and Training in Mental Retardation and Developmental Disabilities, 32, Wish, J. R., McCombs, K. F., & Edmonson, B. (1980). The socio-sexual knowledge and attitude test. Stoelting Company: Chicago, IL.