Sexuality Issuesand GynecologicCare of Adolescentswith DevelopmentalDisabil it ies

Donald E. Greydanus, MDa,*, Hatim A. Omar, MDb

KEYWORDS

� Developmental disabilities � Sexuality � Gynecology� Sexuality education

Sexuality is a complex phenomenon that involves intricate interactions between theindividual’s biologic gender; core identity (sense of maleness or femaleness); andgender role behavior (nonsexual and sexual).1–3 Sexuality continues to be a coreand profound component of humanity in which human beings need other humans.This capacity for giving and receiving love and affection remains throughout life.The success or failure encountered by children and youth with regard to their sexualsystem development significantly contributes to the potential success or failure of theirappropriate transition to adult life.

A common myth among parents and society in general about youth with disabilitiesor even chronic illness is that these children and adolescents are asexual, that theysuppress their sexual needs because of their disability, are not subject to sexualabuse, and do not require any type of sexuality education.4–11 Parents and primarycare clinicians must be educated that such concepts are not true and that alladolescents, whether healthy or not, are sexual human beings and need comprehen-sive sexuality education.4,5,11–31 Parents and clinicians must understand that normaldevelopment of adolescence implies that youth must learn to emancipate fromparents and develop a normal sense of self-identify within the reality of their cognitiveabilities. Youth must learn to understand who they are as functional and sexual humanbeings.

a Pediatrics and Human Development, Michigan State University College of Human Medicine,Michigan State University/Kalamazoo Center for Medical Studies, 1000 Oakland Drive, Kalama-zoo, MI 49008–1284, USAb Adolescent Medicine and Young Parent Programs, J422, Kentucky Clinic, University ofKentucky, Lexington, KY 40536, USA* Corresponding author.E-mail address: Greydanus@kcms.msu.edu (D.E. Greydanus).

Pediatr Clin N Am 55 (2008) 1315–1335doi:10.1016/j.pcl.2008.08.002 pediatric.theclinics.com0031-3955/08/$ – see front matter ª 2008 Elsevier Inc. All rights reserved.

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INTELLECTUAL DISABILITYMild Intellectual Disability

Youth with intellectual disability represent a subgroup of developmental disabilitiescomplicating health care issues in these youth.32 About 3% of the general populationhas significant intellectual deficit and are classified as having mental subnormality.This includes over 1.2 million adolescents with about 100,000 individuals being bornannually. Intellectual disability can be associated with various disorders, includingthose listed next. There is usually no identifiable cause for intellectual disability.33–35

Down syndromeCerebral palsyFetal alcohol syndromeFragile X syndromePrader-Willi syndromeNeurofibromatosisMeningomyeloceleAutismVelocardiofacial syndromeWilliams syndromeOthers

Approximately 80% of youth with intellectual disability are classified as mild intellec-tual disability, with an intelligence quotient in the 50 to 75 range. These youth aretrainable and potentially literate and employable with unskilled or semiskilled jobs.Although often limited to preoperational or concrete operational piagetian thinkinglevels, they go through the main psychologic stages their normal intelligence quotientpeers go through. Youth diagnosed with mild intellectual disability are often painfullyaware of their intellectual limitations and may have considerable difficulty emancipat-ing from parents and establishing a secure self-image.

Youth with mild intellectual disability have the same needs for sexual developmentas their ‘‘normal’’ peers, but society (including parents and clinicians) is often unwillingand unable to accept such a concept. These youth have normal sex drives and desirefor coital behavior that is comparable with their nondisabled peers.11,26,36–38 It is im-portant that health care professionals address sexuality and vocational needs of theiradolescent patients with intellectual disability to allow them normal eriksonian devel-opment.1,28,33,39–44 Indeed, these youth need to learn appropriate sexual behavior, in-cluding what is and what is not acceptable touching. The continuing development ofsexuality in youth with intellectual disability often worries and frightens parents, whobecome concerned about the consequences of such issues as dating, sexual abuse,pregnancy, and sexually transmitted diseases (STDs).20,29,45–48 These youth must re-ceive education to help avoid unwanted sexual exploitation, pregnancy, and STDs.49

Parents must be educated that mentally retarded youth have legal rights to such infor-mation and can be judged competent to handle sexual intimacy.47–50

Moderate-Profound Intellectual Disability

About 12% of youth with intellectual disability are in the moderate range with intelli-gence quotient scores between 25 and 50.1,32 They are called ‘‘trainable individuals’’who can be instructed in basic self-care, appropriate socialization, and basic verbalcommunication. They can perform simple chores and typically remain with the familyor stay in a residential facility. Family members who keep these youth at home usuallyneed guidance in maximizing their child’s or youth’s potential without negatively

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impacting others in the home. These youth must be protected from sexual exploita-tion. Those with intelligence quotients below 25 (severe or profound intellectual dis-ability) are usually totally dependent on others and may be institutionalized in somestates. They need to be cared for with dignity; often have severe health care needs;and must also be protected from being abused (sexually and physically).

ISSUES FOR PARENTS

Parents’ reactions to their developmentally disabled youth’s problems are very impor-tant to the overall psychologic health of the parents and their youth.1,5,8,11,26,31,33,51–61

The birth of a baby can give parents considerable joy and start them off on a journey offantasy about the wonderful things their child may do that will make the parents veryproud and happy. It is a normal desire on the part of parents to want to produce a per-fect child, one that is the best at some or all of the qualities these parents desire. Someparents even live their lives and dreams through their children. Unfortunately, childrenmay not live up to such expectations. Many parents learn to accept such a reality andlearn to love their children in a realistic manner, usually understanding that their chil-dren are simply reflections of themselves, negating the potential of perfection. Chil-dren with disabilities also can be in this category, whether dealing with a child withDown syndrome, intellectual disability, chronic illness, or other.

Parents may mourn the loss of their ‘‘perfect’’ child when confronted with a childwith developmental disability. The sense of loss may be complicated as the childspends more time away from home in school or other facilities. Many adolescentswith or without developmental disabilities can become moody and irritable withwide mood swings, transient school problems, and even suicidal thoughts as they pro-ceed through adolescence. Youth may begin to question previously taught moral, eth-ical, and religious views of parents as these youth seek to understand concepts andperform tasks ‘‘their way’’ consistent with their abilities. Much of this is normal adoles-cent behavior and parents can be taught what is normal and what is abnormal in theseareas.

Some parents develop guilt over producing a disabled child and seek to protecttheir child from life’s many potential difficulties and impasses.62 Such overprotectioncan force these youth to become too dependent on parents and not go through normaladolescent stages of emancipation and identity formation.32,51 Developmental disabil-ity with or without chronic illness or physical handicaps can limit the emancipation pro-cess in these youth and overprotective parents can worsen this negative trend. It isespecially difficult for these parents to allow medically noncompliant youth normalor any autonomy. The parent can be torn between fears of injury and even death fortheir adolescent and the need to allow freedom and personal choice in various mat-ters. Parents may interpret their adolescent’s noncompliance with medical recom-mendations as their being irresponsible, convincing these parents that autonomy isnot a wise choice for their youth. Parents can even consciously or unconsciouslyseek to prevent their youth from appropriately growing up, especially if this is thelast child in the home and the parents have no other interests.

PSYCHOLOGIC EFFECTS OF DISABILITYON SEXUALITY

Disability may constitute a major block to adolescent growth and development by lim-iting the youth’s developing self-image and removing or impacting a normal emanci-pation process.1,4,5,32,54,63–66 The presence of developmental disability or chronicillness may induce major life changes that may impact sexuality development. Healthcare professionals need to be aware that successful maturation may be made more

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difficult by disability, impacting the development of normal sexuality, and healthy sex-ual functioning. Stresses produced by the youth’s attempts to negotiate sexual devel-opment successfully may in turn exacerbate effects of the disability or worsen thechronic illness that is present.

Rejection by peers because of being ‘‘different’’ can pose major hurdles for someyouth, especially those with mental or physical handicaps.1,54 The youth with disabilitywho has a poor self-image becomes easy prey for peers seeking to criticize and tauntothers to deflect damaging criticism on them. Few if any can happily receive constantrejection or harsh criticism from their peers. All people are in various groups as chil-dren, adolescents, or adults. General acceptance by peers is vital to inner stability.The adolescent with developmental disability may conclude that she or he does nothave access to this general acceptance.

As growth patterns begin to accelerate rapidly, and as body contours change dra-matically with the development of secondary sex characteristics, adolescents be-come preoccupied with body image issues; they worry and wonder over theadequacy of this new body (Box 1; Tables 1 and 2). Adolescents with developmentaldisabilities have the added burden of attempting to tolerate real abnormalities and de-viations from their idealized body image. Specific problems encountered with the dis-abled youth involve lowered self-esteem, unsatisfactory body image, and doubtsinvolving future self-sufficiency and the ability to reproduce and parent. Even mildlydisabled adolescents may have significant problems with identify consolidation, par-ticularly if periodic or prolonged hospitalization and medical care become necessary.

Sexual adequacy and sexual activity are often altered by disability and physical ill-ness.1,32,66 The timing of pubertal changes can normally vary considerably (Table 3)and such timing can impact youth considerably in terms of their developing a senseof sexual intimacy.11,60 Some problems can also cause delay in maturation, whetherfrom an actual disorder (eg, in the Prader-Willi syndrome with development of a smallpenis and cryptorchidism in males or delayed puberty in females) or medications (eg,corticosteroids) used in treatment of medical conditions. The development of hypogo-nadism (as noted in some with Down syndrome or Prader-Willi syndrome) has majoreffects on these specific youth. Puberty may be early, however, in a number of condi-tions as follows:11,35

Cerebral palsyHydrocephalusObesityIntellectual disability

Box1Major physical changes of puberty

Major increase in genital system (primary and secondary sex characteristics)

Gaining of 25% of final height (distal growth [eg, of feet] may precede that of proximal parts[eg, the tibia] by 3–4 months)

Doubling of lean and nonlean body mass (gaining by 50% of the ideal body weight)

Doubling of the weight of the major organs

Central nervous system maturation (without increase in size)

Maturation of facial bones

Marked decrease in lymphoid tissue

Table 1Sexual maturity rating or Tanner staging in females

Stage Breasts Pubic Hair RangeI None None Birth to 15 y

II Breast bud (thelarche):areolar hyperplasia withsmall amount of breasttissue

Long downy pubic hairnear the labia; may occurwith breast budding orseveral weeks to monthslater (pubarche)

8.5–15 y (some use 8 y)

III Further enlargement ofbreast tissue and areola

Increase in amount of hairwith more pigmentation

10–15 y

IV Double contour form:areola and nipple formsecondary mound on topof breast tissue

Adult type but notdistribution

10–17 y

V Larger breast with singlecontour form

Adult distribution 12.5–18 y

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Williams syndromeMeningomyeloceleNeurofibromatosis

Early puberty that is a variant of normal or caused by disability or disorder maythrust the precocious child into issues of middle adolescence and beyond beforeshe or he and parents are prepared. For example, sexuality issues become more de-veloped in middle adolescence often with sexual experimentation taking place.

Sexual adequacy for adolescent girls may be measured in terms of physical attrac-tiveness.1 Unattractive physical features caused by a disease process or required

Table 2Sexual maturity rating or Tanner staging in males

Stage Testes Penis Pubic Hair RangeI No change, testes

2.5 cm or lessPrepubertal None Birth to 15 y

II Enlargement oftestes, increasedstippling andpigmentationof scrotal sac

Minimal or noenlargement

Long downy hairoften occurringseveral monthsafter testiculargrowth; variablepattern notedwith pubarche

10–15 y

III Furtherenlargement

Significant penileenlargement,especially in length

Increase inamount, nowcurling

10.5–16.5 y

IV Furtherenlargement

Further enlargement,especially in diameter

Adult typebut not distribution

Variable;12–17 y

V Adult size Adult size Adult distribution(medial aspects ofthighs, linea alba)

13–18 y

Table 3Variations in pubertal changes

Pubertal Changes Age Range of Appearance (y)Thelarche 8–14.8

Pubarche 9–14

Menarche 10–17

Testicular enlargement 9–14.8

Peak height velocity (male) 10–16.6

Peak height velocity (female) 10–14

Adult breast stage (V) 12–19

Adult genitalia (male V) 13–18

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medical treatment often pose a severe threat to self-esteem, sometimes resulting inpromiscuous attempts to prove one’s femininity and normalcy, leading to unwantedpregnancy and STDs. To reduce undesirable physical manifestations of the diseaseprocess or treatment sequelae, the clinician may need to schedule additional appoint-ments to control medication, and when possible, explore alternative means of treat-ment. Cosmetic surgery may be a viable and important option in this regard foradolescents with orthopedic and other defects.

In adolescent girls, serious chronic illness (eg, diabetes mellitus, systemic lupus er-ythematosus, or rheumatic heart disease) or disability (eg, intellectual disability) canpredispose the adolescent to a greater risk of pregnancy than others with less seriousillness or disability. Pregnancy may be consciously or unconsciously viewed by theseyouth as necessary to prove that they are normal and may be part of a mourning pro-cess seen with acceptance of illness or disabilities.4,13,15

Adolescents with disability or chronic illness do not inevitably exhibit psychopathol-ogy, increased anxiety, or lowered self-esteem, however, compared with their healthypeers.66 Sexual interest and sexual activity in developmentally disabled youth shouldbe assumed to parallel such interest and behavior seen in healthy peers, for often suchis the case.33 These youth may become involved in such behavior as masturbation,oral sex, vaginal sex, same-sex behavior, and others.

Research notes that youth with disabilities and chronic illness are also sexual humanbeings and are involved to varying extents in coital behavior, sometimes at rates sim-ilar to or even greater than that seen in healthy peers.4,27,36,54 Those with disabilities orchronic illness that is not easily ‘‘visible’’ may have coital rates higher than seen inthose with ‘‘visible’’ defects or illness.1,27 In any event, the normal need of all adoles-cents for sexual intimacy should not be ignored by clinicians or parents. Appropriatesexuality education is vital for these youth. Consequences of limited sexuality educa-tion may include sexual abuse, STDs, unwanted pregnancy, and sexual dysfunction.Appropriate gynecologic care for adolescent girls with disabilities is also important, asconsidered later in this article.

SEXUAL ABUSE

Sexual abuse is an unfortunate but common situation noted with many children, youth,and adults. Adolescents with intellectual disability and other developmental disabilitiesare at increased risk for being involved with violence including abuse, both physical andsexual.15,45,47,67–87 Three million cases of abuse are reported annually in individuals un-der age 18 whether disabled or not, and abuse cases are typically divided into neglect

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(53%); physical abuse (26%); sexual abuse (14%); and emotional abuse (5%).1 Sexualabuse has been identified in 13% of girls and 7% of boys in the eighth and tenth grades,whereas a history of sexual abuse is reported in 27% of adult women and 16% of adultmen.1 The 2007 Centers for Disease and Prevention Youth Risk Surveillance Surveynoted that 9.9% of 15 to 19 year olds have been hit, slapped, or physically hurt by theirboyfriends or girlfriends with a prevalence as high as 15.7%; 7.8% were forced to havesex.87 The incidence of sexual abuse is especially increased in females with mild intel-lectual disability or physical disabilities versus normal peers.1,15

Rape has become one of the fastest growing crimes of violence in the United Statesand most cases remain unreported. Although 50,000 to 70,000 cases of rape are re-ported each year, the actual number is estimated to be over 500,000.76 In 2006 therewere 272,350 victims of rape, attempted rape, or sexual assault identified with191,670 victims noted in 2005; over 40% of rape victims are under age 18 yearswith an estimated one sixth being under 12 years.81,82 Date rape is a well-known phe-nomenon of violence that can involve all youth and adult.83–87

Incest represents approximately 40% of reported sexual assaults and can involveparents, siblings, and other relatives. One survey noted that 5 of every 1000 collegefemales reported being victims of incest by their father.88 In the classic Weinberg89

study of 103 incest victims, 78% involved father-daughter assault, 18% involvedbrother-sister sexual behavior, 1% was mother-son assault, and 3% involved victim-ization by more than one person. The high divorce rates noted in contemporary societyleads to a changing scene of step-parents, live-in-lovers of divorced parents, andchanging sex partners, fueling the incidence of sexual assault on the children and ad-olescents in the home.90 Those with developmental disabilities are at increased risk insome families for incest. The consequences of such sexual assault are many includingthe following:68,69,74,75,90–93

Chronic drug abuseChronic syncopeDepression and other mental health disordersEating disordersEnuresisExcessive masturbationJuvenile delinquency and other youth violenceJuvenile prostitutionPsychosomatic disturbances (chronic headaches or abdominal pain)Persistent hyperventilation syndromePregnancyRefractory seizure disordersRunaway behaviorSevere parent-child or youth conflictsSchool failure and drop-out behaviorSexually transmitted diseasesSexual dysfunctionSleep disturbancesSuicide attempts and completions

SEXUALITY EDUCATION

Comprehensive sexuality education is the key, as noted, which is directed at the spe-cific patient.1,3,19,22,37,39–42,47,49,66,76,84 For example, discussion of masturbation can

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be directed by the clinician to the parents of young children, children, and youth. Forexample, it can be noted that masturbation is a very common aspect of normal humansexuality and genital self-stimulation for pleasure is practiced by most adults in somemanner. Parents can be reassured about the normalcy of masturbation and that harm-ful effects do not occur.

Genital self-stimulation in children or youth with developmental disabilities may alsoresult from diaper dermatitis in infancy, pinworm infection, tight clothes, nonspecificpruritus, phimosis, or other medical conditions. Masturbation has been recommendedby some therapists to help relieve sexual tension in adults. Youth should be warned,however, about the sexual asphyxia syndrome in which an adolescent or young adultseeks an intense orgasm by partially hanging while masturbating; this practice canlead to considerable harm including death.

Clinicians must realize that all children and adolescents, including those with devel-opmental disabilities, are potentially subject to sexual assault and harassment,whether they are healthy, have developmental disabilities, or have chronic ill-nesses.11,20,22,29,33,36,45,51,94–113 The emotional and psychologic reactions to sexualassault should be understood and comprehensive management provided for thesevictims.1,114–118 Prevention of sexual abuse is important and measures include educa-tion about sexuality that includes teaching all children and youth about appropriatetouching and self-protection skills.101

If preventative measures are to have a lasting effect, comprehensive sexual healtheducation for all children and adolescents is crucial to this goal of prevention.47,119–121

All adolescents including those with developmental disabilities should have access toaccurate information about sexuality, contraception, STDs, substance abuse, and themyriad of topics relating to healthy behavior. Information about sexuality should bedirected to the comprehension and specific needs of the adolescent pa-tient.4,28,29,40,49,51,119,122–141

Youth often have questions about their sexual behavior and clinicians can inquireabout these questions while providing accurate, unbiased information withoutembarrassment. Ignoring these needs of adolescents because of the presence of de-velopmental disabilities is to be avoided on the part of the clinician. The health main-tenance examination may be the only opportunity for adolescents to ask about issuesrelated to masturbation, menstruation, sexual activity, reproduction, contraception,and other topics of interest to them.6,8,26,33,103,137,138,142–149 It is understandablethat parents often have a difficult time discussing such topics with their childrenand adolescents.

Clinicians can also assess the social skills of their patients with developmental dis-abilities and recommend places where such training can occur.150,151 The lack of ac-cess to age-appropriate peers and lack of access to privacy faced by somehandicapped individuals can lead to various difficulties. Such youth need to havegood social skills and understanding about healthy human relationships to avoid beingbullied or victimized at school or even in the home and to be able to avoid unwantedsexual touching and assault.8,22,28,51,60,124,125,133,135,138,152–154 It is important toeducate adolescents and parents about the danger of unwanted sexual overturesand harassment that occurs over the Internet.152

GYNECOLOGIC CARE IN DEVELOPMENTALLY DELAYEDADOLESCENTS

Proper gynecologic care for all adolescent girls is important, regardless of their levelsof physical, mental, or cognitive abilities; these youth should not receive substandardgynecologic care because neither clinicians nor parents are aware or appreciate these

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needs.4,20,26,30,33,70,73,106,146,147,155–162 Lack of training in residency and physicianconcern with lack of skills in this area should not compromise patient care.4

Gynecologic needs are similar for all adolescent girls but such health care may bemore complicated by various factors sometimes seen in those with developmental dif-ficulties (Box 2):20,33,73,106,162–171

Gynecologic care should include a complete gynecologic history, physicalexamination, and selected laboratory testing.172 It includes education of the patientin appropriate developmental language, and the caregiver (when the patient is unableto physically, cognitively, or mentally deal with these issues). Education should stressthe need for periodic examinations that may include gynecologic evaluations; breastexaminations by the patient (or the caregiver if necessary); and options related to men-struation and, when appropriate, contraception.73,106

In adolescent girls, a careful menstrual history should be obtained and should not beignored simply because she has a developmental disability. The history includes men-arche (age of menstrual period onset) and characteristics of the menstrual flow, suchas its frequency, duration, and presence of menstrual cramps.172 Using a menstrualcalendar is useful in pinpointing normal adolescent variations in menstrual patternsversus overt menstrual disorders (ie, dysmenorrhea, premenstrual syndrome, or men-struation-related moodiness or agitation).33,106,155,171,172 Plotting mood or behaviorchanges may even show cyclic behaviors before the onset of menses. The physicaland behavioral changes that are present must be differentiated from a variety of gyne-cologic and urologic disorders.168,172

Clinicians can look for clues to discomfort and disease in patients who have diffi-culty expressing themselves.73,106,155,163,167 For example, crying on urination withfoul-smelling urine suggests a urinary tract infection, whereas a fever without clearcause may also represent a urinary tract infection. Excessive vulvar irritation may becaused by masturbation, whereas a vaginal discharge with history of frequent antibi-otic use suggests Candida albicans vaginitis. Vaginal discharge in children may havea variety of causes including nonspecific vulvovaginitis; foreign body vaginitis; allergicvulvovaginitis; or specific vulvovaginitis (ie, bacteria [Streptococcus, Shigella]), fungus[C albicans], parasites [Trichomonas vaginalis, Enterobius vermicularis], Phthirius

Box 2Factors complicating gynecologic care in females with developmental disabilities

Increased communication difficulties in those with developmental difficulties

Cognitive limits that may be found in some with developmental difficulties

Increased neurologic problems in some with developmental difficulties (eg, seizures)

Multiple joint complications in some developmental difficulties patients (ie, deformities,contractures, spasticity, autonomic dysreflexia)

Increased presence of other orthopedic disorders (eg, kyphoscoliosis)

Impaired sitting position in some with developmental difficulties (eg, decubitus ulcers)

Increased nutritional issues in some with developmental difficulties (eg, feeding tubesor gastroesophageal reflux)

Others

Lack of knowledge on part of parents or clinicians regarding such care

Parents’ or clinicians’ refusal to provide such care

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pubis, or viruses [herpes simplex simples, cytomegalovirus, others]. Pruritus ani maybe caused by infection with pin worms (Enterobius vermicularis).173 If T vaginalis is de-tected in the urine or on a Papanicolaou (Pap) smear, suspect coital behavior and pos-sible sexual abuse.

If the adolescent girl is not sexually active (voluntary or involuntary), a pelvic exam-ination is not necessary unless there is a history of a sexual assault or gynecologicsymptoms.73,106 A pelvic examination is not needed initially if contraception is re-quested and the girl is not sexually active. Techniques for a pelvic examination for dif-ficult patients (ie, those with cognitive limitations, contractures, others) are describedin the literature.20,33,106,163–174 These techniques include various position adjustments(as frog-leg position, V-position, M-position, or leg elevation without hip abduction);use of the Huffman-Graves speculum (long, narrow type) or no speculum; cottonswab Pap smear; one-finger bimanual examination; or a rectoabdominal examina-tion.1,4,20,33,106 An examination under sedation may be needed in some situations.175

Radiologic evaluation with a pelvic ultrasound, CT, or MRI also may be necessary.Periodic Pap smears are recommended by 3 years from sexarche (onset of coital

activity) or by age 21 if the patient remains virginal to screen for abnormal cervical cy-tology that may eventually lead to cervical cancer.176 Pap smear techniques may beconventional or liquid-based. In the liquid-based Pap smear one uses a cervicalbroom and places the specimen in liquid container; in the convention Pap smearone uses a spatula and cytobrush or cervical broom and then smears the specimenon a glass slide after which a spray or liquid fixative is applied.176 The liquid-basedtechnique may be helpful in increasing the adequacy of the specimen even when vi-sualization of the cervix is difficult or impossible. Other advantages of the liquid-basedPap smear include increased sensitivity (versus the conventional Pap smear); reducedextraneous material on the smear; and the ability to test for certain STD microbes,such as Chlamydia trachomatis, Neisseria gonorrhoeae, and the human papillomavi-rus.177 Vaccination of girls with the human papillomavirus vaccine is recommendedto reduce their risk for cervical cancer.

Instruction in proper hygiene may be an issue for some of these patients, whereasvarious methods are used to control problematic menstruation and related hygiene is-sues, including behavioral modification training, hormonal management (combinedoral contraceptives, depo-medroxy-progesterone acetate, others), or gynecologicsurgery (endometrial ablation or hysterectomy).4,20,26,47,103,106,155,165,166,169 Inpatients with significant cognitive limitations, education may be confined to hygieneimprovement and prevention of sexual abuse.

Any adolescent girl may have breast and menstrual disorders, such as amenorrhea,abnormal menstrual bleeding, dysfunctional uterine bleeding, dysmenorrhea,premenstrual tension syndrome. They should be carefully evaluated and man-aged.4,20,26,103,106,155,156,163,166,168–172 Some conditions lead to increased incidenceof menstrual disorders. For example, those with trisomy 21 are often associatedwith thyroid disorders that may lead to amenorrhea or dysfunctional uterine bleed-ing.155 Turner’s syndrome should always be considered in the differential diagnosisof the adolescent female with short stature and amenorrhea caused by prematureovarian failure.35 Patients with developmental disabilities may be placed on variousmedications that lead to menstrual dysfunction; these mediations include anticonvul-sants and neuroleptics.178

Contraception

Contraception should be discussed with sexually active youth and those whoare not sexually active but have questions in this regard.143–145 The risks of having

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multiple partners should be discussed; some youth practice ‘‘serial’’ monogamy’’ inwhich they believe that having only one partner at a time and changing over timeprotects them from STDs. Those who are sexually active should be screened forSTDs and placed on appropriate contraception if this is desired or ac-cepted.4,20,36,73,106,143–149,157,166,167,169,171,174,179–181 Education about emergencycontraception and use of condoms should also be provided.

Barrier contraception and the intravaginal ring may not be the best contraceptivechoice for women with developmental disabilities unless they are motivated to usesuch methods and have the cognitive and physical abilities to use barrier contracep-tion with each coital act or use the ring as directed.143,179–181 Concerns with oral con-traceptive agents may include side effects, such as thromboembolic events notedwith estrogen-containing methods or increased menstrual bleeding or bone mineralloss noted with progestin-only methods.143,144,179–181 Concerns of thromboembolismor bone density loss may be especially noted in those with limited mobility, such asthose who are wheelchair bound.143,179–181 There are no data on the use of Implanonfor adolescents with developmental disabilities.

The most popular contraceptive method for women with developmental disabilitiesis depo-medroxy-progesterone acetate because it is given intramuscularly and canlead to amenorrhea. Use of depo-medroxy-progesterone acetate must be balanced,however, with the loss of bone mineral density (with potential increase in fractures) thatis associated both with this contraceptive agent and with developmental disabilities insome patients.182,183 Counseling before initiation of contraception with careful follow-up is important. Finally, sterilization of youth with developmental disabilities remainsa controversial and complex topic.20,48,55,70,103,155,161,184–188

Sexual Dysfunction

The issue of physical sexual expression and reproductive capacity should beaddressed during the adolescent years by an informed, sensitive therapist, counselor,or physician. This helps to correct misconceptions about sexuality and provides forhealthy sexual functioning. Sexual dysfunction may arise because of lack of properknowledge about sexuality. A variety of sexual dysfunctions, listed below, maydevelop in adolescents or adults with disabilities because of the disorder itself; med-ications needed for management of medical conditions; or complications found intheir lives (eg, sexual abuse).189–191 Sexual dysfunction may develop in adolescencethat continues into adulthood.192

DyspareuniaOrgasmic dysfunctionErection dysfunctionEjaculation dysfunction (premature, retrograde, or retarded)Others

Youth may have visible deformities that may interfere with sexual expression; theseissues include paraplegia, amputations, ostomies, or abnormal genitalia that requirespecial counseling.1 These youth may feel inadequate compared with their ‘‘normal’’peers and develop various sexual dysfunctions. Performance pressure may predis-pose to sexual dysfunction in any individual. Chronic illness may create a setting inwhich actual enjoyment of sexuality is limited although physical functioning is normal.For example, youth with colostomies can be anxious about the odor coming from theostomy; those with arthritis may be in pain; or those with spinal cord lesions may havepainful bed sores or be worried about autonomic dysreflexia (a condition triggered by

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sexual stimulation, constipation, genital examination, and other actions and might leadto various effects from simple tingling sensation to respiratory arrest). In consideringone with sexual dysfunction, various psychologic and organic factors should beevaluated.

SUMMARY

Adolescence presents complex challenges for teenagers, parents, clinicians, andsociety.193 Youth with physical disorders and developmental disabilities presentadditional complications for parents and clinicians.194,195 It is important to providesexuality education and reproductive care to all adolescents including those with de-velopmental disabilities. Adolescents are involved in voluntary or involuntary sexualbehavior and the presence of developmental disability does not exclude these youthfrom human sexuality and its consequences. Data from the 2002 National Survey ofFamily Growth reports that 47% of never-married girls aged 15 to 19 years of agehave been sexually active (versus 46% of 15–19 year old boys).196 Prevention of sex-ual abuse in this population is vital to overall healthy development.197 The 2007 YouthRisk Behavior Surveillance of the Centers for Disease Control and Prevention reportsthat 47.8% of 15 to 19 year olds report being sexually experienced versus 46.2% in1991.87 If the girl remains sexually active, contraception education and prescriptionthat includes education in use of condoms is needed. The 2007 YRBS report notesthat 61.5% of sexually active youth used a condom at last coitus versus 46.2% in1991.87 Gynecologic care includes education about hygiene and management of var-ious gynecologic issues, such as vaginal discharge, breast and menstrual disorders,and others as considered in this article. Provision of comprehensive care to all youth,including those with developmental disabilities and chronic illness, is part of the linch-pin in the pediatric goal of allowing adolescents access to maximum success in adult-hood by offering optimal care as children and adolescents along with transitioning toadult life.198,199 Adolescents with disabilities are just as much at risk, if not more thantheir ‘‘normal’’ peers. Those with disability may want to prove that they are ‘‘normal,’’whereas the ones without disability may not.

REFERENCES

1. Greydanus DE, Rimsza ME, Newhouse PA. Adolescent sexuality and disability.Adolesc Med Clin 2002;13:223–47.

2. Brown RT. Adolescent sexuality at the dawn of the 21st century. Adolesc Med2000;11:19–34.

3. Hofmann AD, Greydanus DE, editors. Adolescent medicine. 3rd edition. Stam-ford (CT): Appleton & Lange; 1997. p. 800.

4. Shah P, Norlin C, Logsdon L, et al. Gynecological care for adolescents with dis-ability: physician comfort, perceived barriers, and potential solutions. J PediatrAdolesc Gynecol 2005;18:101–4.

5. Earl DT, Blackwelder RB. Management of chronic medical conditions in childrenand adolescents. Prim Care 1998;25:253–70.

6. Neufeld JA, Klingbeil F, Bryen DN, et al. Adolescent sexuality and disability. PhysMed Rehabil Clin N Am 2002;13:857–73.

7. Evans AL, McKinlay IA. Sexual maturation in girls with severe mental handicap.Child Care Health Dev 1988;14:59–69.

8. Kroll K, Klein E. Enabling romance: a guide to love, sex, and relationships fordisabled people (and the people who care about them). New York: CrownPublishers; 1992. p. 120.

Developmental Disabilities 1327

9. Neff J. Sexual well-being: a goal for young blind women. J Vis Impair Blind 1983;77:296–7.

10. Sawyer SM, Phelan PD, Bowes G. Reproductive health in young women withcystic fibrosis: knowledge, behaviour, and attitudes. J Adolesc Health 1995;17:46–50.

11. Siddiqi SU, Van Dyke DC, Donohoue P, et al. Premature sexual development inindividuals with neurodevelopmental disabilities. Dev Med Child Neurol 1999;41:392–5.

12. Bernstein NR. Sexuality in adolescent retardates. In: Sugar M, editor. Atypicaladolescence and sexuality. New York: WW Norton; 1990. p. 44–56.

13. Biggs WS. The family physician’s challenge: guiding the adolescent with chronicillness to adulthood. Clin Fam Pract 2000;2:1–11.

14. Cole SS. Disability/ability: the importance of sexual health in adolescence:issues and concerns of the professional. SIECUS Report 1981;9:3–4.

15. Cheng MM, Udry JR. Sexual behaviors of physically disabled adolescents in theUnited States. J Adolesc Health 2002;31:48–58.

16. Coupey SM, Lerman L, editors. Symposium on adolescent sexuality: preventingunhealthy consequences. State of the Art Rev: Adol Med 1992; 2:160–253.

17. Craft A, Craft M. Sexuality and mental handicap: a review. Br J Psychiatry 1981;139:494–505.

18. Evans JW, Evans ML. Sensory disability and adolescent sexuality. In: Sugar M, ed-itor. Atypical adolescence and sexuality. New York: WW Norton; 1990. p. 57–86.

19. McClennen S. Sexuality and students with intellectual disability. TeachingExceptional Children 1988;20:59–61.

20. Muram D, Elkins TE. Reproductive health care needs of the developmentallydisabled. In: Sanfilippo JS, Muram D, Lee PA, et al, editors. Pediatric and adoles-cent gynecology. Philadelphia: WB Saunders Co.; 1994. p. 490–8, chapter 31.

21. Ousley OY, Mesibov GB. Sexual attitudes and knowledge of high functioning ad-olescents and adults with autism. J Autism Dev Disord 1991;21:471–81.

22. Sex education for children and youth with disabilities. NICHCY News Digest1992;1:1–27 (National Information Center for Children and Youth with Disabil-ities, Washington, DC).

23. Simonds JF. Sexual behaviors in retarded children and adolescents. J DevBehav Pediatr 1980;1:173–9.

24. Strax TE. Psychological issues faced by adolescents and young adults with dis-abilities. Pediatr Ann 1991;20:507–11.

25. Berman H, Harris D, Enright R, et al. Sexuality and the adolescent with a physicaldisability: understandings and misunderstandings. Issues Compr Pediatr Nurs1999;22:183–96.

26. Sulpizi LK. Issues in sexuality and gynecologic care of women with developmen-tal disabilities. J Obstet Gynecol Neonatal Nurs 1996;25:609–14.

27. Suris JC, Resnick MD, Cassuto N, et al. Sexual behavior of adolescents withchronic disease and disability. J Adolesc Health 1996;19:124–31.

28. Pincus S. Sexuality in the mentally retarded patient. Am Fam Physician 1988;37:319–23.

29. Van Dyke DC, McBrien DM, Sherbondy A. Issues of sexuality in Down syndrome.Downs Syndr Res Pract 1995;3:1–6.

30. Alexander B, Schrauben S. Outside the margins: youth who are different andtheir special health care needs. Prim Care 2007;33:285–303.

31. Wolfish MG, McLean JA. Chronic illness in adolescents. Pediatr Clin North Am1974;21:1043–9.

Greydanus & Omar1328

32. Pratt HD, Greydanus DE. Intellectual disability (intellectual disability) in childrenand adolescents. Prim Care 2007;34:375–86.

33. Bradshaw KD, Elkins TE, Quint EH. The patient with intellectual disability: issuesin gynecologic care. Raritan (NY): Ortho-McNeil; 1996. p. 30.

34. Daily DK, Ardinger HH, Holmes GE. Identification and evaluation of mental retar-dation. Am Fam Physician 2000;61:1059–67.

35. Greydanus DE, Draznin MM, Hare JD. Endocrine disorders. In: Hofmann AD,Greydanus DE, editors. Adolescent medicine. 3rd edition. Stamford (CT):Appleton & Lange, chapter 16; 1997. p. 314–47.

36. Chamberlain A, Rauh J, Passer A, et al. Issues in fertility control for mentallyretarded female adolescents: sexual activity, sexual abuse, and contraception.Pediatrics 1984;73:445–50.

37. Edwards JP. Growing into a social-sexual being. In: Pueschel SM, Sustrova M,editors. Adolescents with Down syndrome. Baltimore (MD): Brookes; 1997. p.59–69.

38. Schwab WE. Sexuality and community living. In: Schab WE, editor. Downsyndrome: advances in medical care. New York: Wiley-Liss; 1992. p. 157–66.

39. Evans AL, McKinlay IA. Sex education and the severely mentally retarded child.Dev Med Child Neurol 1989;31:98–103.

40. Johnson DM, Johnson WR. Sexuality and the mentally retarded adolescent.Pediatr Ann 1982;11:847–53.

41. McCabe MP. Sex education programs for people with intellectual disability. MentRetard 1993;31:377–87.

42. National Information Center for Children and Youth with Disabilities. Sexualityeducation for children and youth with disabilities. NICHCY News Digest 1992;3:1–27.

43. Schwab W. Sexuality in Down syndrome. New York: National Down SyndromeSociety; 1991.

44. Tyler CV Jr, Bourguet C. Primary care of adults with intellectual disability. J FamPract 1997;44:487–94.

45. Furey EM. Sexual abuse of adults with intellectual disability: who and where.Intellect Disabil 1994;32:173–80.

46. Murphy N, Young PC. Sexuality in children and adolescents with disabilities. DevMed 2005;47:640–4.

47. Murphy NA, Elias ER. Council on children with disabilities. Pediatrics 2006;118:398–403.

48. Rauh JL. Mentally retarded youth. In: McAnareny ER, Kreipe RE, Orr DP, et al,editors. Textbook of adolescent medicine. Philadelphia: WB Saunders Co.;1992. p. 229–32, chapter 31.

49. Sexuality education of children and adolescents with developmental disabilities.American Academy of Pediatrics. Committee on Children with Disabilities.Pediatrics 1996;97:275–8.

50. Tarantino L, Stavis P. Sexual activity in the mentally disabled population: somestandards of the criminal and civil law. Qual Care 1986;28:2–3.

51. Betz CL. Developmental considerations of adolescents with developmentaldisabilities. Issues Compr Pediatr Nurs 1994;17:111–20.

52. Fegan L, Rauch A, McCarthy W. Sexuality and people with intellectual disability.Baltimore (MD): Paul H. Brookes Publishers; 1993. p. 144.

53. Freedman RI, Boyer NC. The power to choose: supports for families caringfor individuals with developmental disabilities. Health Soc Work 2000;25:59–68.

Developmental Disabilities 1329

54. Kaplan ME, Friedman SB. Reciprocal influences between chronic illness andadolescent development. Adolesc Med 1994;5:211–21.

55. Patterson-Keels L, Quint E, Brown D, et al. Family views on sterilization for theirmentally retarded children. J Reprod Med 1994;39:701–6.

56. Pueschel SM, editor. Parent’s guide to Down syndrome: toward a brighter future.Baltimore (MD): Paul H. Brookes; 1990. p. 100.

57. Rupp R, Rosenthal SL. Parental influences on adolescent sexual behaviors.Adolesc Med State Art Rev 2007;18:460–70.

58. Stuber ML. Psychiatric sequelae in seriously ill children and their families. Psy-chiatr Clin North Am 1996;19:481–93.

59. Tannila A, Kokkonen J, Jarvelin MR. The long-term effects of children’s early-onset disability on marital relationships. Dev Med Child Neurol 1999;38:567–77.

60. Zajicek-Farber ML. Promoting good health in adolescents with disabilities.Health Soc Work 1998;23:203–13.

61. Sulkes SB. Intellectual disability in children and adolescents. In: Greydanus DE,Pratt HD, Patel DR, editors. Behavioral pediatrics. 2nd edition. New York &Lincoln (NE): iUniverse Publishers; 2006. p. 66–83, chapter 3.

62. Goldson E. Behavioral issues in the care of children with special health careneeds. In: Greydanus DE, Pratt HD, Patel DR, editors. Behavioral pediatrics.2nd edition. New York & Lincoln (NE): iUniverse Publishers; 2006. p. 182–205,chapter 8.

63. Rew L. Sexual health of adolescents with chronic health conditions. AdolescMed State Art Rev 2007;18:519–29.

64. Greydanus DE, Fonseca H, Pratt HD. Childhood and adolescent sexuality.In: Greydanus DE, Pratt HD, Patel DR, editors. Behavioral pediatrics. 2ndedition. New York & Lincoln (NE): iUniverse Publishers; 2006. p. 295–330,chapter 12.

65. Birnkrant DJ, Hen J, Stern RC. The adolescent with cystic fibrosis. Adolesc Med1994;5:249–58.

66. DeLoach CP. Attitudes toward disability: impact on sexual development andforging of intimate relationships. J Appl Rehabil Couns 1994;25:18–25.

67. Pratt HD, Greydanus DE. Violence: concepts of its impact on children and youth.Pediatr Clin North Am 2003;50:963–1003.

68. Palusci VJ, McHugh MT. Abuse in the child and adolescent. In: Greydanus DE,Pratt HD, Patel, editors. Behavioral pediatrics. 2nd edition. New York & Lincoln(NE): iUniverse Publishers; 2006. p. 769–811, chapter 30.

69. Adams JA. Sexual abuse and the adolescent patient. In: Greydanus DE,Patel DR, Pratt HD, editors. Essentials of adolescent medicine. New York:McGraw-Hill Medical Publishers; 2006. p. 333–40.

70. Broecker JD, Ross LS. Developmental delay, including Down syndrome. In:Hillard PJA, editor. The 5-minute obstetrics and gynecology consult. Philadel-phia: Wolters Kluwer/Lippincott Williams & Wilkins; 2008. p. 90–1.

71. Morano JP. Sexual abuse of the mentally retarded patient: medical and legalanalysis for the primary care physician. Prim Care Companion J Clin Psychiatry2001;3:126–35.

72. Greydanus DE, Bhave SY. Mentally challenged adolescents. In: Bhave SY,Nair MKC, Parthasarathy P, editors. Bhave’s textbook of adolescent medicine.New Delhi: Jaypee Brothers Medical Publishers; 2006. p. 745–8, 22.3.

73. Greydanus DE, Bhave S. Adolescents with intellectual disability. RecentAdvances in Pediatrics 2006;17.14:174–92.

Greydanus & Omar1330

74. Finkelhor V, Dziuba-Leatherman J. Children as victims of violence: a nationalsurvey. Pediatrics 1994;94:413–20.

75. Finkelhor V, Hotaling G, Lewis I. Sexual abuse in a national survey of adult menand women: prevalence, characteristics and risk factors. Child Abuse Negl1990;14:9.

76. Greydanus DE, Shearin R. Incest and sexual assault. In: Adolescent sexualityand gynecology. Philadelphia: Lea and Febiger; 1990. p. 244–61.

77. Muram D. Adolescent victims of assault. J Adolesc Health Care 1995;17:372–5.78. Kemp CE. Sexual abuse, another hidden pediatric problem. Pediatrics 1978;62:

382–9.79. Wilson M, Joffe A. Adolescent medicine. JAMA 1995;273:1657–9.80. Felitti VJ, Anda RF, Nordenberg D, et al. Relationship of childhood abuse and

household dysfunction to many leading causes of death in adults: the AdverseChildhood Experience (ACE) Study. Am J Prev Med 1998;14:245–7.

81. Crime Victimization, 2006. US Department of Justice. Bureau of Justice. Statistics,Washington DC. NCJ 219413 December, 2007. Available at: www.ojp.usdoj.gov.Accessed September 30, 2008.

82. Muran D. Sexual assault. In: Hillard PJA, editor. The 5-minute obstetrics andgynecology consult. Philadelphia: Wolters Kluwer/Lippincott Williams & Wilkins;2008. p. 602–3.

83. Benson D, Charlton C, Goodheart F. Acquaintance rape on campus: a literaturereview. J Am Coll Health 1992;40:157–65.

84. Boulter S. Committee on Adolescence, American Academy of Pediatrics. Sexualassault and the adolescent. Pediatrics 1994;94:761–5.

85. MacKay AP, Duran C. Adolescent Health in the United States, 2007. WashingtonDC: National Center for Health Statistics; 2007. DHHS Publication no.2008–1034.

86. Koss NP. Hidden rape: sexual aggression and victimization in a national samplein higher education. In: Burgess AW, editor. Rape and sexual assault II. NewYork: Garland; 1988. p. 2–25.

87. Centers for disease control and prevention surveillance summaries. MMWR2008;57(SS–4):1–136.

88. Finkelhor D. Child sexual abuse: new theory and research. New York: FreePress; 1984.

89. Weinberg KS. Incest behavior. New York: Citadel Press; 1963.90. Greydanus DE. Sexuality and promiscuity, sexually transmitted diseases, and ju-

venile prostitution. In Child Development: a Judge’s Reference Guide. Reno(NV): National Council of Juvenile and Family Court Judges; 1993. p. 80–6.

91. Alan Guttmacher Institute. Into a new world: young women’s sexual and repro-ductive lives. p. 1–56, New York: The Alan Guttmacher Institute, (120 Wall Street,NY, NY USA 10005),1998. Available at: www.agi-usa.org. Accessed September30, 2008.

92. Silverman A, Reinherz HZ, Giaconia F. The long-term sequela of childhood andadolescent abuse: a longitudinal study. Child Abuse Negl 1996;20:709–23.

93. Aggarwal K, Bhave SY. Sexual abuse in children and adolescents. In:Bhave SY, Nair MKC, Parthasarathy P, et al, editors. Bhave’s textbook of ado-lescent medicine. New Delhi: Jaypee Brothers Medical Publishers; 2006. p.211–27, 6.8.

94. Ammerman RT, Van Hasselt VB, Hersen M, et al. Abuse and neglect in psychi-atrically multihandicapped children. Child Abuse Negl. 1989;13:335–43.

Developmental Disabilities 1331

95. Baladerian NJ. The sexual assault survivor’s handbook for people with develop-mental disabilities and their advocates. San Jose (CA): R & E Publishers; 1991.p. 34.

96. Brookhouser PE, Sullivan P, Scanlan JM, et al. Identifying the sexually abuseddeaf child: the otolaryngologist’s role. Laryngoscope 1986;96:152–8.

97. Hibbard RA, Desch LW, Committee on Child Abuse and Neglect, et al. Maltreat-ment of children with disabilities. Pediatrics 2007;119(5):1018–21.

98. Dupe SR, Anda RF, Felitti VJ, et al. Childhood abuse, household dysfunction,and the risk of attempted suicide throughout the life span. Findings from theAdverse Childhood Experience Study. JAMA 2001;286:3089–96.

99. Elvik SL, Berkowitz CD, Nicholas E, et al. Sexual abuse in the develop-mentally disabled: dilemmas of diagnosis. Child Abuse Negl 1990;14:497–502.

100. Greydanus DE, Patel DR. The female athlete: before and beyond puberty.Pediatr Clin North Am 2002;50:222–40.

101. Haseltine B, Miltenberger RG. Teaching self-protection skills to persons with in-tellectual disability. Am J Ment Retard 1990;95:188–97.

102. Hewitt SE. The sexual abuse of young persons with mental handicap. Med Law1989;8:403–14.

103. Kreutner AK. Sexuality, fertility, and problems of menstruation in mentallyretarded adolescents. Pediatr Clin North Am 1981;28:475–80.

104. Longo RE, Gochenour C. Sexual assault of handicapped individuals. J Rehabil1981;47:24–7.

105. Podell DM, Kastner J, Kastner S. Intellectual disability and adult women’s per-ceptions of adolescent sexual abuse. Child Abuse Negl 1994;18:809–19.

106. Quint EH. Gynecological health care for adolescents with developmental dis-abilities. Adolesc Med 1999;10:221–9.

107. Schor DP. Sex and sexual abuse in developmentally disabled adolescents.Semin Adolesc Med 1987;3:1–7.

108. Sionean S, DiClemente RJ, Wingoode GM, et al. Psychosocial and behaviouralcorrelates of refusing unwanted sex among African-American adolescentfemales. J Adolesc Health 2002;30:55–63.

109. Solomons G. Child abuse and developmental disabilities. Dev Med Child Neurol1979;21:101–8.

110. Sullivan PM, Brookhouser PE, Scanlan JM, et al. Patterns of physical and sexualabuse of communicatively handicapped children. Ann Otol Rhinol Laryngol1991;100:188–94.

111. Tharinger D, Horton CB, Millea A. Sexual abuse and exploitation of children andadults with intellectual disability and other handicaps. Child Abuse Negl 1990;14:301–12.

112. Westcott H. The abuse of disabled children: a review of the literature. Child CareHealth Dev 1991;17:243–58.

113. Young ME, Nosek MA, Howland C, et al. Prevalence of abuse of women withphysical disabilities. Arch Phys Med Rehabil 1997;78(Suppl 5):S34–8.

114. Burgess AW, Holstrom LL. Rape and trauma syndrome. Am J Psychiatry 1974;131:981–6.

115. Kellogg N. The evaluation of sexual abuse in children. Pediatrics 2005;116:506–12.

116. Hegar A, editor. Evaluation of the sexually abused child. 2nd edition. New York:Oxford University Press; 2000.

Greydanus & Omar1332

117. Wood DP. Sexual abuse during childhood and adolescence and its effects onthe physical and emotional quality of life of the survivors: a review of the litera-ture. Mil Med 1996;161:582–7.

118. Copeland-Linder N, Serwint JR. Posttraumatic stress disorder. Pediatr Rev2008;29:103–4.

119. Greydanus DE, Pratt HD, Dannison LL. Sexuality education programs for youth:current state of affairs and strategies for the future. J Sex Educ Ther 1995;21(4):238–54.

120. Ott MA, Santelli JS. Approaches to adolescent sexuality education. AdolescMed State Art Rev 2007;18:558–70.

121. Brown RT, Brown JD. Adolescent sexuality. Prim Care 2006;33:373–90.122. Rome ES. Adolescent sexuality. In: Greydanus DE, Patel DR, Pratt HD, editors.

Essential adolescent medicine. NewYork: McGraw-Hill Medical Publishers;2006. p. 481–96, chapter 22.

123. BarrettM.Resourcesonsexualityand physical disability. RehabilDig 1984;15:15–8.124. Melberg Schwier K, Hinsburger D. Sexuality: your sons and daughters with

intellectual disability. Baltimore (MD): Paul H. Brookes Publishers; 2000.125. Champagne M, Walker-Hirsch L. Circles: intimacy and relationships. Santa

Barbara (CA): James Stanfield; 1988.126. Glicken SR. Health care for deaf adolescents. Adolesc Med 1994;5:345–58.127. Haka-Ikse K, Mian M. Sexuality in children. Pediatr Rev 1993;14:401–7.128. Hein K, Coupey SM, Cohen MI. Special considerations in pregnancy prevention

for the mentally subnormal adolescent female. J Adolesc Health Care 1980;1:46–9.

129. Monat-Haller RK. Understanding and expressing sexuality: responsible choicesfor individuals with developmental disabilities. Baltimore (MD): Paul H. BrookesCo.; 1992. p. 50–1.

130. Reed NA, Edwards LE, Naughton SS. An AIDS prevention program for adoles-cents with special learning needs. J Sch Health 1992;62:195–7.

131. Schuster CS. Sex education of the visually impaired child: the role of parents.J Vis Impair Blind 1980;80:675–80.

132. Sex Information and Education Council of the United States (SIECUS). Sexualityand disability: a SIECUS annotated bibliography of resources. SIECUS Rep1995;23:1–21.

133. Brown JD, Strasburger VC. From Calvin Klein to Paris Hilton and MySpace:adolescents, sex, and the media. Adolesc Med State Art Rev 2007;18:484–507.

134. Haight SL, Fachting DD. Materials for teaching sexuality, love, and maturity tohigh school students with learning disabilities. J Learn Disabil 1986;19:344–50.

135. Ikeler B. Teaching about sexuality. Exceptional parent 1990;20:24–6.136. Kempton W, Caparulo F. Sex education for persons with disabilities that hinder

learning: a teacher’s guide. Santa Barbara (CA): James Stanfield Co.; 1989. p.200.

137. Leavesley G, Porter J. Sexuality and contraception in disability. Contraception1982;26:417–41.

138. McKown JM. Disabled teenagers: sexual identification and sexuality counsel-ling. Sex Disabil 1986;7:17–27.

139. Alan Guttmacher Institute: sex and America’s teenagers. p. 50, New York: TheAlan Guttmacher Institute, (120 Wall Street, NY, NY USA 10005), 1994. Availableat: www.agi-usa.org. Accessed September 30, 2008.

Developmental Disabilities 1333

140. Nair MKC, George B, Chacko DS. Adolescent sexuality. In: Bhave SY, Nair MKC,Parthasarathy P, et al, editors. Bhave’s textbook of adolescent medicine. NewDelhi: Jaypee Brothers Medical Publishers; 2006. p. 160–6, 6.1.

141. Greydanus DE, editor. Caring for your adolescent. 2nd edition. Elk Grove Village(IL): American Academy of Pediatrics; 2003. p. 606.

142. Fonseca H, Greydanus DE. Sexuality in the child, teen, and young adult: con-cepts for the clinician. Prim Care 2007;34:275–92.

143. Greydanus DE, Rimsza ME, Matytsina L. Contraception for college students.Pediatr Clin North Am 2005;52:135–61.

144. World Health Organization. Reproductive health and research: medical eligibilitycriteria for contraceptive use. 3nd edition. Geneva (Switzerland): WHO; 2004. p.170.

145. Omar H, Greydanus DE, Tsitsika A, editors. Pediatric and adolescent sexualityand gynecology. New York: Novi Science Publishers; 2009.

146. Elkins TE, McNeeley DG, Punch M, et al. Reproductive health concerns in Downsyndrome: a report of eight cases. J Reprod Med 1990;154:745–50.

147. Goldstein H. Menstruation, sexual relations, and contraception of adolescentfemales with Down Syndrome. Eur J Obstet Gynecol Reprod Biol 1988;27:343–9.

148. Haefner HK, Elkins TE. Contraceptive management for female adolescents withintellectual disability and handicapping disabilities. Curr Opin Obstet Gynecol1991;3:820–4.

149. Hakim-Elahi E. Contraceptive of choice for disabled person. N Y State J Med1982;1601–8.

150. Pratt HD, Pratt MA, Sackett M. Youth survival: addressing the role of promotingthe acquisition of the prosocial trial and other survival skills in youth. Prim CareClin Off Pract 2007;219–25.

151. Nagpal J, Prasad DS. Life skills training programs. In: Bhave SY, Nair MKC,Parthasarathy P, et al, editors. Bhave’s textbook of adolescent medicine. NewDelhi: Jaypee Brothers Medical Publishers; 2006. p. 299–304, 8.4.

152. Mitchell KJ, Finkelhor D,, Wolak J. Risk factors for and impact of online sexualsolicitation of youth. JAMA 2001;285:3011–4.

153. Wallander JL, Siegel LJ, editors. Adolescent health problems: behavioral per-spectives. New York: Guilford Press; 1995.

154. Elkins TE. Providing gynecologic care for women with intellectual disability. MedAspects Hum Sex 1991;2:56–61.

155. Carpenter SEK. Gynecologic care for the mentally handicapped individual.In: Carpenter SEK, Rock JA, editors. Pediatric and adolescent gynecology.NewYork: Raven Press; 1992. p. 451–5, chapter 29.

156. Huovinen KJ. Gynecological problems of mentally retarded women: a case-con-trol study from southern Finland. Acta Obstet Gynecol Scand 1993;72:475–80.

157. Greydanus DE, Patel DR, Patel HD, editors. Essential adolescent medicine.NewYork: McGraw-Hill Medical Publishers; 2006. p. 805.

158. Christian L. Staff values regarding the sexual expression of women with devel-opmental disabilities. Sexuality and Disability 2001;19(4):283–91.

159. Greydanus DE, Strasburger VC, editors. Adolescent medicine. Prim Care: ClinOffice Pract 2006;33:269–72.

160. Pulcini J. The relationship between characteristics of women with mental retar-dation and outcomes of the gynecologic examination. Clin Excell Nurse Pract1999;3:221–9.

Greydanus & Omar1334

161. Sterilization of women, including those with mental disabilities. In: Ethics inobstetrics and gynecology/The American College of Obstetricians and Gynecol-ogists. 2nd edition. Washington DC: American College of Obstetrics andGynecology; 2004. p. 56–9.

162. Furman L. Institutionalized disabled adolescents: gynecologic care. The pedia-trician’s role. Clin Pediatr 1989;28:163–7.

163. Elkins TE, Haefner HK. Sexuality related health care for developmentally dis-abled adolescents. Adolesc Med 1992;3:331–8.

164. Elkins TE, McNeeley SG, Rosen D, et al. A clinical observation of a program toaccomplish pelvic exams in difficulty-to-manage patients with mental retarda-tion. Adolesc Pediatr Gynecol 1988;1:195–8.

165. Pattulo A, Barnard KE. Teaching menstrual hygiene to the mentally retarded. AmJ Nursing 1968;68:2572.

166. Owens K, Honebrink A. Gynecologic care of medically complicated adoles-cents. Pediatr Clin North Am 1999;46:631–42.

167. Basson R. Sexual health of women with disabilities. CMAJ 1998;159:359–62.168. Greydanus DE. Breast disorders and gynecologic disorders. In: Adolescent Med-

icine. 3rd edition. Stamford (CT): Appleton & Lange; 1997. p. 520–65, chapter 25.169. Wingfield M, Healy DL, Nicholson A. Gynecologic care for women with intellec-

tual disability. Med J Aust 1994;160:536–8.170. Greydanus DE, Matytsina L, Gains M. Breast disorders in children and adoles-

cents. Prim Care 2006;455–502.171. Greydanus DE, Omar H, Tsitsika A. Menstrual disorders in the adolescent

female. Dis-a-Month 2009;55:1–60.172. Greydanus DE, Tsitsika A, Gains M. The gynecology system and the adolescent.

In: Greydanus DE, Feinberg AN, Patel DR, et al, editors. Pediatric physical diag-nosis. NewYork: McGraw-Hill Medical Publishers; 2008. p. 701–49.

173. Johnson J. The gynecology system and the child. In: Greydanus DE,Feinberg AN, Patel DR, et al, editors. Pediatric physical diagnosis. New York:McGraw-Hill Medical Publishers; 2008. p. 185–699, chapter 20.

174. Omar H. Management of menstrual problems in adolescents with special healthcare needs. J Pediatr Adolesc Gynecol 2003;16:51–6.

175. Rosen DA, Rosen KR, Elkins TE, et al. Outpatient sedation: an essential additionto gynecologic care for persons with intellectual disability. Am J Obstet Gynecol1991;164:825–7.

176. Greydanus DE, Omar HA, Patel DR. Cervical cancer screening in the adoles-cent female. Pediatr Rev 2009;52:111.

177. Greydanus DE, Patel DR. Sexually transmitted diseases. In: Burg FD,Ingelfinger JA, Polin RA, et al, editors. Current pediatric therapy. 18th edition.Philadelphia: Elsevier; 2006. p. 326–9, Section 6.

178. Greydanus DE, Calles JL Jr, Patel DR. Pediatric and adolescent psychopharma-cology: a practical manual for pediatricians. Cambridge (UK): CambridgeUniversity Press; 2008. p. 301.

179. Gittes EB, Strickland JL. Contraceptive choices for chronically ill adolescents.Adolesc Med 2005;16:635–44.

180. Heroux K. Contraceptive choices in medically ill adolescents. Semin ReprodMed 2003;21:389–98.

181. Kaunitz AM. ACOG Practice Bulletin: the use of hormonal contraception inwomen with coexisting medical conditions. Int J Gynaecol Obstet 2001;75:93–106.

Developmental Disabilities 1335

182. Guijarro MJ, Valero G, Paule J, et al. Bone mass in young adults with Down syn-drome. J Intellect Disabil Res 2008;52(Part 3):182–9.

183. Schrager S, Koss C, Ju AW. Prevalence of fractures in women with Intellectualdisabilities: a chart review. J Intellect Disabil Res 2007;51(Part 4):253–9.

184. Rauh JL, Dine MS, Biro FM, et al. Sterilization for the mentally retarded adoles-cent: balancing the equities—the Cincinnati experience. J Adolesc Health Care1989;10:467–72.

185. American Academy of Pediatrics, Committee on Bioethics: sterilization ofwomen who are mentally handicapped. Pediatrics 1990;85:868–71.

186. Sterilization of minors with developmental disabilities. American Academy ofPediatrics, Committee on Bioethics. Pediatrics 1999;104:337–40.

187. Silber T, Batshaw JL. Ethical dilemmas in the treatment of children with disabil-ities. Pediatr Ann 2004;33:752–61.

188. American College of Obstetricians and Gynecologists. Sterilization of womenwho are mentally handicapped. ACOG Committee Opinion 63. Washington,DC: ACOG; 1988.

189. Greydanus DE, Pratt HD, Baxter T. Sexual dysfunction and the primary carephysician. Adolesc Med 1996;7(1):9–26.

190. Greydanus DE, Demarest DS, Sears MJ. Sexuality and the chronically ill adoles-cent. In: Sugar M, editor. Atypical adolescence and sexuality. New York: WWNorton; 1990. p. 147–57.

191. Halvorsen JG, Metz ME. Sexual dysfunction, part II: diagnosis, management,and prognosis. J Am Board Fam Pract 1992;5:177–92.

192. Neistadt ME, Frieda MW. Choices: a guide to sex counseling with physically dis-abled adults. Melbourne (FL): Robert E. Krieger Publishers; 1987. p. 132.

193. Greydanus DE, Patel DR. Adolescent health. In: McDonagh JE, White P, editors.Adolescent rheumatology. New York/London: Informa Healthcare; 2008. p.291–310, chapter 13.

194. Shontz FC. The Psychological aspects of physical illness and disability. NewYork: Macmillan Publishing Co.; 1975. p. 294.

195. Omar HA, Greydanus DE, Patel DR, et al, editors, Adolescence, chronic illness,and disability. Internat J Disabil Hum Dev 2008;7(3):1–100.

196. Abma JC, Martinez GM, Mosher WD, et al. Teenagers in the United States:sexual activity, contraceptive use, and childbearing: 2002. National Center forHealth Statistics. Vital Health Stat 23 2004;(24):1–2.

197. Lumley VA, Miltenberger RG. Sexual abuse prevention for persons with intellec-tual disability. Am J Ment Retard 1997;101:459–72.

198. Whitehouse S, Paone M. Patients in transition: bridging the health care gap fromyouth into adulthood. Contemp Pediatr 1996;34:13–6.

199. Reiss J, Gibson R. Health care transitions: destinations unknown. Pediatrics2002;110(Suppl 6):1307–14.