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Doi:10.1016/j.spen.2006.09.010

Mental Retardation in Children Ages 6 to 16 Mental retardation (MR) is a life long condition that affects 6 million American and 560,000Canadian children under the age of 14. This review discusses the definition of MR, anapproach to investigation, common comorbidities, and a general approach to management.
Semin Pediatr Neurol 13:262-270 2006 Elsevier Inc. All rights reserved.
KEYWORDS mental retardation, management
Mentalretardation(MR)isageneraltermforarelatively standard deviation (SD) on measures such as the Wechsler common, life-long condition in which differences in Scales. In mild MR, IQ is 2 to 3 SD below the mean; in cognitive and adaptive development occur because of abnor- moderate MR, 3 to 4 SD below the mean; in severe MR, 4 to malities of brain structure or function. Medically, MR should 5 SD below the mean; and in profound MR, IQ is more than not be thought of as a diagnosis but rather as a symptom of 5 SD below the mean. In contrast, the AAMR does not sub- neurologic dysfunction, like weakness or spasticity. The classify MR based on IQ ranges but focuses on whether sup- presence of MR has impact on many aspects of the lives of port needs in the various adaptive skill areas are intermittent, children, their families, and their communities and is an im- limited, extensive, or pervasive, the ILEP classification sys- Definitions
Terminology
There are currently 2 commonly used formal definitions of Debate about the terminology of developmental disability in MR. The Diagnostic and Statistical Manual of Mental Disorders, general and mental retardation in particular and Fourth Edition (DSM-IVdefines MR by 3 coexisting features practitioners can feel at times that they are in a linguistic (1) significantly subaverage intellectual functioning accom- minefield. In some countries, mental retardation has been panied by (2) deficits or impairments in adaptive functioning largely discarded in favor of learning disability or intellectual that are (3) evident before age 18. The definition of the Amer- because the term mental retardation is regarded by ican Association on Mental Retardation contains some as pejorative. Others argue that mental retardation has a essentially the same 3 core components but also lists key definition, unlike alternative terms, and should therefore en- assumptions that are essential to application of the definition.
sure clarity of communication. A study by Panek and These address the importance of appropriate assessment with in the Midwestern United States, found that there was some respect to elements such as age, culture, language, and envi- evidence favoring mentally challenged as a term, although ronment; the need to delineate strengths as well as limitations the difference in how positively it was seen in comparison to and to identify support needs; and the potential for persons the other terms was not large.This author’s experience has with MR to improve with respect to life functioning if pro- been that poorly timed use of the term mental retardation can vided with the appropriate supports for a sustained period.
harm therapeutic relationships and that the use of alterna- Degrees of MR are additionally described within the DSM- tives is generally preferable when speaking with affected in- IV, based on numerical IQ scores and assuming associated dividuals and their families. These include mentally chal- adaptive deficits. These ranges reflect the degree of deviation lenged and development delay. Developmental delay is defined of the IQ from a mean of 100, with 15 points representing 1 by some as applying only to children under 5 years of age andmental retardation to older but the reality is thateach is often applied outside those age ranges. If a practitio- Department of Pediatrics, Dalhousie University, Division of Developmental ner uses mental retardation, it is best to clarify with families Pediatrics, Halifax, Nova Scotia, Canada.
their interpretation of the term and their feelings about it, Address reprint requests to Sarah E. Shea, MD, FRCPC, C/0 IWK Health Centre, P.O. Box 9700, Halifax, Nova Scotia, B3K 6R8 Canada. E-mail: rather than assuming a shared understanding. Regardless of which term is used, good communication requires that any 1071-9091/06/$-see front matter 2006 Elsevier Inc. All rights reserved.
doi:10.1016/j.spen.2006.09.010 Mental retardation
term be accompanied by appropriate explanation, including ences, and cardiac or genitourinary anomalies are examples how it applies to the child’s developmental profile, and by of findings that may suggest syndromes associated with MR.
information about prognosis, to the degree that it is known The physical examination should include testing of vision and hearing, both as part of the search for etiology and be-cause of the higher prevalence of comorbid sensory deficits in Epidemiology of MR
Findings may immediately suggest to the clinician an as- The prevalence of MR is generally quoted as roughly sociated syndrome or disorder. If not, pattern recognition although cohorts defined only by IQ will range from 2% to may be enhanced by the use of resources such as the Online 3%. A recent review of the epidemiology of MR in children Mendelian Inheritance in Man which provides a indicated that actual measured prevalence varies consider- search engine into which one can list clinical findings, in- ably, with ranges as high as 9.7% in 1 series of 10- to 14-year cluding the presence of MR, and receive a list of possible olds.This variance reflects differences in the populations diagnoses. The neurodevelopmental profile itself can some- studied, case definition, and study design. The same review times provide a clue to etiology. For example, some children noted that based on a normal distribution of intelligence, MR with MR have a coexisting nonverbal learning disorder pat- would be expected to be in the mild range 75% to 80% of the tern, which should lead the clinician to consider causes such time but that the reported prevalence of children with IQs in as velocardiofacial or Williams among others.
the moderate to profound range may be somewhat Studies vary with respect to the reported likelihood that an MR is found more commonly in boys than girls in a 1.4:1 etiology can be established for developmental delay and/or MR with yields from 10% to There is consensus that Based on available population figures and a 1% preva- the history and the physical examination are the most critical lence, there are currently approximately 6 million American elements of the investigation. Next most helpful is genetic and 560, 000 Canadian children under the age of 14 years testing. Fragile X syndrome has a reported frequency of 1% in children with milder delays and 4.1% of those with moresignificant Chromosomal abnormalities on routine cy- Etiology
togenetic studies are reported to be present in 2.93% to11.6% of children with delayed For children Efforts to identify the cause of a child’s MR are important with MR and other findings or a suggestive family history, because this may improve the recognition of associated there may be additional yield from assessment for subtelo- health issues (eg, progressive supravalvular aortic stenosis in meric abnormalities via fluorescent in situ hybridization or the child with Williams syndrome) or have genetic implica- the use of comparative genomic Genetic test- tions for the affected individual and his family (eg, tuberous ing should be considered even in the absence of dysmorphic sclerosis or Fragile X). In some cases, a treatable condition features because these are absent in 4 of 10 children with MR may be identified and the neurodevelopmental outcome im- proved (eg, lead poisoning). Families typically seek to know The diagnostic yield for metabolic studies, electroenceph- the cause of their child’s developmental differences and this alogram, thyroid function testing, and lead screening in chil- knowledge may assist them in understanding their child and dren with isolated mild mental retardation (ie, those without in accessing support systems. Children with severe to pro- abnormalities on examination or diagnostic red flags in the found MR will most commonly be identified as having devel- history) is The yield for abnormalities on neuroimag- opmental differences before the age of 6 years and will typi- ing, especially with magnetic resonance imaging, in children cally have had some investigation with respect to causation in with MR is relatively high. One study with children under 5 early childhood. However, milder degrees of MR may not be years reported abnormal findings in 13.9% when imaging recognized until a child encounters difficulties in the aca- was done for “screening” and 3 times higher when there were demic setting, and a search for the etiology will therefore be focal neurologic findings or head growth initiated later. In addition, in cases of MR in which no etiol- However, it is not clear that finding cerebral dysgenesis or ogy has been determined, the hunt for causation becomes an localized minor brain structure differences is actually truly answering the underlying question, “Why does this child A review of the history and a thorough physical examina- have MR?” One is often left asking either “Is this relevant?” or tion can aid in identifying the possible etiology. The inter- “Why, then, did this brain develop differently?” Such find- view should cover family history; prenatal, perinatal, and ings also rarely affect management or outcome. Neuroimag- neonatal events; past medical history of both neurologic and ing, moreover, is not without cost or risk. In this population, other conditions; a review of systems; and a detailed history computed tomography (CT) scan and magnetic resonance of development and behavior. Information about the child’s imaging often require sedation and general anesthesia, re- physical, social, and family environments as well as interven- spectively. For cranial CT scans in children, the lifetime risk tions accessed to date is also important. The physical of cancer related mortality, cited as 0.07% for a cranial CT examination should be comprehensive because clues to the scan of a 1-year should be factored into decision making.
etiology may be found in virtually any system. Growth ab- In the absence of additional indications for metabolic as- normalities, skin markings, unusual facies, skeletal differ- sessment or neuroimaging, therefore, it is this author’s prac- S.E. Shea
tice to limit offered investigations to chromosome assessment risk of overestimating the presence of MR with early intelli- and molecular analysis for Fragile X for children in this age gence tests. The prognostic strength of measures of intelli- range newly diagnosed with MR. These genetic tests should gence in the autistic population is lower than in delayed but be undertaken only after full discussion with the family (and otherwise typical children. Improvement in IQ is more com- the child, where appropriate) of the medical, emotional, and monly observed in the autistic group. Many individuals with social implications of abnormal results. Consultation with a autism, however, show adaptive behavior that is impaired geneticist may be helpful in more complex cases and if more more than would be expected for a given level of intelligence.
detailed chromosomal testing is being considered.
When children do not have an identified etiology for their mental retardation, it is important that they be followed be-cause some may later develop features that reveal an under- Prevalence rates for ADHD in school-aged children vary con- lying diagnosis. Periodic physical examination is indicated to siderably. Brownell and reported prevalence in monitor for changes such as new cutaneous findings; differ- Manitoba of 1.52% overall, whereas Blanchard and cowork- ences in pubertal development; or changes in hearing, vision, reported a figure of 6.9% based on the 2003 National or growth that could lead to relevant diagnoses.
Survey of Children’s Health in the United States. The preva-lence of ADHD in children with MR is reported in the 9% to15% ADHD can compromise the progress of chil- Comorbidities
dren with MR, interfere with integration within schools, and Children with MR are at a significantly increased risk for a add stress at home. The diagnostic criteria for ADHD do not wide variety of comorbid conditions and should be actively change in the context of MR, but behavior needs to be inter- screened for these on a periodic basis.
preted with respect to the child’s developmental profile andnot just his/her age. The child with MR and ADHD can ben- efit from both nonpharmacologic and pharmacologic inter-ventions. Children with MR are somewhat less likely to re- Subsets of children with MR have recognized syndromes or spond to stimulant medications than other children or may medical conditions that are associated with certain comor- require higher doses, but these remain first-line options in bidities. Children with Down syndrome, for example, need view of their low rate of significant side There is to be monitored for hearing impairment, visual difficulties, some evidence that treatment with methylphenidate may im- atlantoaxial instability, celiac disease, hypothyroidism, and prove some aspects of cognitive functioning in children with so on. Children with Williams syndrome may have progres- MR and When children with MR and comorbid sive supravalvular aortic stenosis or other cardiac conditions, ADHD have disruptive behaviors that are seriously interfer- abnormalities related to calcium metabolism, and differences ing with their function, consideration can be given to other in growth. Associations that have developed around specific medications, such as alpha-agonists or atypical antipsychot- conditions often maintain up-to-date resources for profes- ics. It should be noted, however, that these remain “off-label” sionals (eg, National Down syndrome Society) on their Inter- uses for these medications. Risperidone, in particular, has net websites. Physicians can access condition-specific growth been shown to compare favorably with methylphenidate for charts and health maintenance check lists to assist them.
the management of ADHD in children and adolescents withAt this time, there is no information available regarding the use of atomoxetine specifically in individuals with MR.
The relationship between autism and mental retardation is This author has had success using atomoxetine with some complex. It is estimated that 20% to 30% of children with MR children with MR and ADHD, including some with comorbid also have autism spectrum It can be harder to autism. A limiting issue with the use of this preparation and determine whether autism is present or not in children with some other formulations used to treat ADHD can be the MR. Stereotypies such as rocking or atypical hand move- inability of some children with MR to swallow an intact cap- ments are common in children with more severe degrees of sule or refrain from chewing sprinkled medications. In such MR, as is the lack of pretend In and of themselves, cases, consultation with a behavioral psychologist to teach these do not make a diagnosis of autism, which should be the child to swallow pills can be effective.
reserved for situations in which there is a clear difference inthe quality of social and communicative behaviors. A markedreduction in the frequency of attempts to communicate can be a particularly helpful finding because those are normally Sensory deficits are present in 2% of children with milder present even in situations of severe and profound MR.
degrees of MR and 11% of children with severe Diag- Reversing the equation, a significant number of children nostic caution is advisable where there is severe sensory im- with diagnosed autism also meet criteria for MR. Children pairment because there is a risk of underestimating intelli- with classical autism have a reported prevalence of MR of gence if it is assessed without consideration of the sensory 70% to Within the broader modern conceptualiza- difficulty. Such assessment is best performed by those expe- tion of “autism spectrum disorder,” the percentage of affected rienced in assessing intelligence and adaptive behavior in the children with comorbid MR is significantly lower. There is a context of visual or hearing impairment.
Mental retardation
are relatively unstudied for this purpose. There is more in- Cerebral Palsy is reported in 6% to 8% of children with mild formation about risperidone than the others, including evi- MR and up to 30% of children with severe As with dence for effectiveness in improving disruptive and conduct sensory impairment, the presence of cerebral palsy may affect disorders in children with The more common side the assessment of intelligence, particularly when there is im- effects include weight gain and somnolence. Weight gain can pairment of upper-limb function. Verbal intelligence is more be dramatic. Extrapyramidal dysfunction and tardive dyski- straightforward to assess if children are reliably verbal. As- nesia are much less frequent with the atypical antipsychotics sessment of nonverbal/performance intelligence is more chal- but can occur. There is some evidence that valproic acid may lenging, but there are tools designed to assess visual/spatial be helpful for aggression, self-injury, and other affective learning without the motor component (eg, test of Visual symptoms in individuals with MR, but studies have been Mood disorders such as anxiety and depression can occur in children and youth with MR and may be more Social isolation and emerging insight into differences can The rates of psychiatric and behavioral disturbances among contribute to this enhanced susceptibility. Assessment for children with MR have been estimated as high as mood disorders may need to rely more on observed behav- Parents may need additional support in developing optimal ioral change than on self-report in individuals with severe behavior-management strategies. Other caregivers and teach- MR. Children and youth with MR can also have comorbid ers may also need to have clear behavior strategies in place.
obsessive-compulsive disorder, Tourette syndrome, and The principles of behavior management for children with MR other tic disorders, as well as posttraumatic stress disorder, are the same as for others. The key differences are that be- eating disorders, and personality The pharmaco- havior needs to be interpreted with respect to the develop- logic treatment of these will be similar to that for children mental level and that it may be harder to determine the func- who do not have MR. There is significant debate with respect tion of behaviors. Where there is challenging behavior, it canbe very helpful to apply the basic ABC approach of analysis, to the efficacy of cognitive behavioral therapy in assisting which looks at (A) antecedents of the behavior (ie, what was individuals with MR and mental health concerns.Individ- going on at the time the behavior occurred?) (B) behavior (ie, ual children or youth with MR can be assessed to see whether exactly what happened?) and (C) consequences to the behav- they have the component cognitive skills for cognitive behav- ior (ie, what was accomplished through the behavior and ioral therapy, which include awareness of emotion, the abil- ity to link events and emotions, and the ability to engage in Sometimes assessing behaviors using the ABC format will show that there are antecedent conditions that predict unde-sired behaviors. Some children, for example, may be upset with unexpected transitions and therefore act out. It may be Sleep problems, including circadian rhythm disturbances, noted with respect to consequences that noncompliance gen- are common in children with MR. Sleep problems may be erated disruptions are inadvertently being reinforced when organic in origin (eg, sleep apnea associated with Down syn- children do not have to stick with low-interest activities.
drome), behaviorally driven, or related to lifestyle. Underly- Challenging behavior in children with more severe degrees of ing physical contributors, such as obesity, tonsillar enlarge- MR may be seen to occur when there is a communication gap.
ment, and gastroesophageal reflux, should be addressed. In Careful analysis of behavior can identify potential modifiable general, behavioral and lifestyle approaches are preferred as environmental factors, clarify skills that need to be taught toallow a child another way to express himself or solve a prob- first-line interventions for nonorganic sleep problems. Chil- lem, and help caregivers determine whether their responses dren with MR often lack sufficient exercise or may be permit- ted to nap beyond the typical age. Cosleeping (ie, allowing The use of psychopharmacologic agents to modify the be- the child to sleep for all or part of the night in the parental havioral profile of children with MR is a growing and some- bed) is also somewhat more common in this group and may what controversial area. As alluded to previously, most compromise sleep hygiene. If a sleep problem is severe and agents are being used “off label” either with respect to the age behavioral interventions unsuccessful, medication support of the recipient or the indication, and many of them are may be required. Where possible, it should be used only relatively unstudied. Individuals with MR are less likely to be short term. There are very few quality studies of the short- consulted with respect to their medication preferences, and term or long-term safety or effectiveness of medications for decision making is almost always done by proxy. Therefore, children’s sleep That being said, this author has greater caution is needed in prescribing. Nonetheless, judi- found that melatonin can be helpful, typically in doses of 2 to cious and targeted use of medications can improve the func- 6 mg. The impact appears to be primarily on sleep tion and lives of children and youth with MR and mental Other options to induce sleep include clonidine or traz- odone. A more challenging problem is when a child wakes A number of the atypical antipsychotics are in use to man- repeatedly or for long periods during the night. Controlled- age difficult behavior in children and youth with MR. Most release melatonin and trazodone may help with this.
S.E. Shea
Educational Needs of
routes of communication for those whose expressive skills Children and Youth With MR
are limited. Communication skills have a huge impact on thequality of life of individuals with MR and must remain a The last few decades have seen a move away from the previ- ous paradigm of separate education for individuals with MRin favor of a more inclusive approach. The rationale given for Inadequate Opportunity to Build Functional/ this is both philosophical and educational. It is easier to make the philosophical arguments about the need to value and Long-term outcome for individuals with MR can be signifi- include all members of a community than it is to pin down cantly improved through the development of leisure skills.
the impact on outcome. Attempts at meta-analyses of differ- Active skills are of particular importance and are less likely to ent educational studies have been Nonethe- develop without planning. This leaves children dependent less, most American and Canadian school systems actively on passive, typically electronic, experiences such as watching pursue an inclusive approach to special education at this Leisure activities provide an opportunity to develop time, and this has been generally welcomed by people with social skills and physical fitness and improve function and MR and those who advocate with and for them.
should be part of students’ individualized plans. Educational One of the desired goals of inclusive education is to im- programs for children with MR should include introduction prove the social experience of the child with MR. Unfortu- to a variety of leisure activities, such as card games, board nately, inclusion alone does not appear to achieve adequate games, walking/hiking with others, bowling, swimming, social integration, especially as children move into the mid- painting, making crafts, and so on. Many household skills are dle and later elementary school years. Children with MR are both functional and recreational, such as cooking, baking, more likely to be rejected by Therefore, structured and sewing. Students can be supported in pursuing areas of approaches to help students with and without MR to relate interest and developing them into hobbies, which in the long more positively to one another may be needed. As students run may help them connect with others. Teaching these skills get older, they appear to be more likely to find their deepest along with the key components of social skills are very ap- friendships among others with identified special needs and propriate components of individualized program plans for should have opportunities to socialize together.
students with MR. Grooming, manners, and knowing how tomaintain relationships are all skills that individuals need to Common Problem Areas at
thrive within communities. It may take longer for some indi- School for Children With MR
viduals with MR to learn these skills, and their early intro-duction into the individual’s curriculum and reinforcement It is the author’s experience that the following are potential concerns for the child with MR at school, regardless ofwhether inclusive or segregated approaches are used.
Sexuality/Puberty
Issues in Youth With MR
Mainstream schools are naturally built around a traditional Most individuals with MR go through puberty on a typical academic model and have finite resources. It can be challeng- schedule. Those with underlying central nervous system ing for them to provide a sufficiently varied and interesting problems such as hydrocephalus may have precocious pu- program for children with MR. This is especially true for berty. Intervention in such cases to prevent an early onset of those children with more severe degrees of learning diffi- menses may be helpful because it can allow further time to culty. There is a risk of boredom if a child’s program remains develop self-help skills that will assist with menstrual hy- inappropriately locked into a confined academic model.
giene. Although parents are often quite anxious about pu- Some children spend time tracing letters or doing repetitive berty issues, most individuals negotiate this stage without worksheets year after year in well-intentioned attempts to major difficulty. In general, girls who are able to handle their include them in “academic” activities. Boredom may present toileting hygiene will manage their menstrual hygiene. Some as withdrawal behaviors, such as increased stereotypies, self- will need reminders and prompts, which can be easily incor- talk, or disruptive behavior. An escalation in these activities should prompt a review of school programming to ensure Physicians can help families monitor for complications of menstruation such as premenstrual mood or behaviorchanges. If the timing of periods is unpredictable, flow is excessive, or there are significant premenstrual behavioral Most children with MR have significant differences in their issues, consideration can be given to the use of an oral con- communication skills and need to be actively working on traceptive. This will often reduce the amount of flow and these throughout their education. Periodic assessment of the mood variability and also offers the security of predictable child‘s communication intervention needs is critical, includ- menses. Menstrual suppression through the use of depot me- ing supports for articulation, comprehension, verbal expres- droxyprogesterone or of an oral contraceptive regimen with sion, pragmatic use of language, and the need for alternative fewer scheduled periods per year is also an option. However, Mental retardation
any decision related to menstrual manipulation must care- taught skills but failed to exhibit them in follow-up fully weigh the risks and benefits. Long-term use of depot This suggests that appropriate supervision remains the key medroxyprogesterone, for example, has been associated with The use of hormonal agents is also associatedwith increased risk of stroke. The quality of life of the indi-vidual with MR must be carefully considered, and substitute Healthy Active Living for
decision making must always have the well being of the in-dividual for whom the decisions are being made as the high- Children and Youth With MR
Children, youth, and adults with MR are at increased risk of Parents still inquire about sterilization for their adolescent obesity and poor In some cases, there is a direct daughters with MR. This is a complex issue. Paransky and relationship with underlying medical disorders, such as have published an excellent review on this subject.
Prader-Willi and Bardet-Biedl syndromes. In most cases, If the concern behind such a request relates to menstrual however, it is because of a lack of opportunity for exercise, management, strategies such as those discussed earlier can be too much passive recreation, and poor eating habits.
introduced. If the concern is risk of pregnancy, balanced Children with MR may have difficulty accessing many recre- discussion about the likelihood of a young woman’s being ational sports programs. Although the earliest levels of sport- sexuality active should occur. Individuals with MR have thesame rights to be sexually active as others but are at a higher related programs, such as T ball, can be successfully inclusive, risk for being coerced. Sterilization is not a substitute for many community programs quickly become competitive and adequate protection of a vulnerable population, but refusing are less welcoming. There are, however, in many areas recre- to ever consider sterilization as a possible contraceptive op- ational opportunities that can accommodate individuals with tion for someone on the basis of their intellectual ability is developmental differences. In some communities, recre- also not reasonable. Consultation with a gynecologist expe- ational therapists can help find ways to include children.
rienced in assisting young women with MR can be invaluable Some community recreation programs have financial assis- when issues pertaining to menstruation and contraception tance available to provide an aide to assist with integration arise. In challenging situations, an ethics consultation may within the program. Some areas will have special programs also help the involved parties reach consensus.
for children and youth with developmental disabilities, such Only a minority of young men and women with MR will be as therapeutic horseback riding or the Special Olympics Pro- infertile, typically because of chromosomal abnormalities gram. It is important is to encourage all families to take a (eg, males with Down syndrome,) and most will show evi- shared family approach to healthy active living.
dence of typical sexual feelings. Sexuality education can be Growth charts that have been assembled specifically to more challenging in this population but is important. Re- assess the growth of children with conditions, such as Down sources for sexuality education need to be individualized to syndrome, should be regarded with caution. They may be match the level of understanding of the young person. For based on populations that are, in fact, prone to obesity be- example, to help individuals with limited ability to under- cause of the previous factors and may not reflect healthy body stand the more abstract issues, the “bathing suit rule” can be proportions. It may help to use a body mass index chart to helpful for teaching about appropriate touch. Very simply, young people can be taught that they should not touch otherpeople in the areas typically covered by their bathing suit norshould they allow others to touch them in the areas that Planning for the Future
would typically be covered by a bathing suit. A good direc-tory for relevant resources can be found at the website for the Just as it is important to start teaching leisure and adaptive National Dissemination Center for Children with Disabili- skills early, it is also important to plan for job-related skills, particularly for those individuals in the mild to Parents and teachers commonly express concerns about moderate MR categories. The communication, grooming, masturbation, particularly when it occurs in public settings.
and etiquette skills previously described are important. So The concern is so common that physicians should ask about too is learning about the fundamentals of employability it as part of their review at visits. In most cases, education such as punctuality, appropriate attire, and work place about privacy and redirection are sufficient to deal with the behavior, along with exposure to different community set- issue. Teaching strategies such as social stories may also be of tings that might offer work opportunities. This is more Parents may be concerned about the risk for sexual abuse straightforward for individuals who are best matched or coercion of their children with MR. There is some evidence within a sheltered or supportive work environment. Many that programs for persons with MR can improve knowledge individuals with mild MR, however, can match to a more regarding sexual abuse, but to date there is little information independent work setting if they have an opportunity to about whether they change outcome. One study of a sexual develop the necessary skills. The list of possible opportu- abuse–prevention program for adults with MR found that the nities is long, and having experts in vocational placement participating women improved in their knowledge of the working with high schools is particularly helpful.
S.E. Shea
Funding/Resources
Keeping It Together tool to assist families with organizing the and Supports for Families
information they receive and support them when interactingwith different service providers. This is important because Families with children with MR often encounter extra ex- families typically find that they do a lot of case management penses. Some of these will relate to extra health care needs.
themselves, and instruction and support in how to best do Others are because of delays in the development of self-help this, including how to maintain documentation, communi- skills such as toilet training and the ongoing need for baby- cate effectively with others, actively participate in case con- sitting/supervision, supports for recreation, and therapies ferencing, and so on, can be very helpful.
that may not be provided through the public system. Physi- The vast majority of children and youth with MR live with cians should ensure that families have access to current in- their families of origin. It is important to recognize the critical formation about funding opportunities available to them as importance of the family in the immediate, short term, and well as the relevant information for federal taxes. Families long term outcome of children. Service providers should as- benefit from having ongoing contact with an informed social sist families in choosing their own priorities and should avoid worker because funding situations and rules often change.
contributing to overload and confusion. Working together to Families may also benefit from being connected with na- formulate individualized family service plans can be ex- tional or local support groups such as the Canadian Associ- tremely helpful. This is a much broader concept than the ation for Community Living, the AAMR, the Canadian Down Individualized Educational Plan a child might have at school Syndrome Society, and so on. The list of such organizations is because it takes into account the many dimensions of the huge, contact routes often change, and it may be hard for individual child’s life and that of his/her family.
practitioners to keep up. The Internet is generally the easiestroute for families and professionals to access up-to-date in- Prognosis
formation regarding such organizations.
Parents of children with developmental disabilities typicallyseek predictions from very early on about adult outcomes.
The Role of Support Teams
Concerns about the future may increase as children enter theschool system and are seen to differ from their peers. At all Children with MR are individuals with varying needs. The levels of severity of MR, there will be a seeming widening over skills of a variety of professional and community caregivers time of the developmental gap. Parents may worry that this may be needed to assist both child and family. Children with represents deterioration, particularly if they have understood MR may benefit from assessment and intervention support a child to be running “1 year behind” and are then told that he from a speech/language pathologist. Fine-motor, self-help, is “2 years behind” because of the slower rate of development.
and other adaptive skills are in the domain of the occupa- Parents need to understand that predictions early in life tional therapist (OT), and OT assessment can be of consid- generally have to be somewhat nonspecific and that the prog- erable Speech/language pathologists and OTs often nosis for an individual child becomes clearer over time.
work together to provide technical access/augmentative com- Adaptive skill development, which can have significant influ- munication support for children with difficulty in motor ence on independence and employability, varies and does and/or verbal output. Physical therapist assessment is indi- not always match with IQ. Outcomes depend on other vari- cated for children with significant motor deficits and can ables as well and, in particular, on the presence of comorbid support modification of activities to allow fitness to develop.
conditions such as autism, cerebral palsy, sensory impair- A recreational therapist’s role has been described already and ments, and disruptive behavior disorders.
can be helpful when available. Caregivers and teachers of The severity of a child’s MR can give a general indication of children with challenging behaviors may benefit from a con- expectations. This is related to the differences in learning and sultation with a behavioral psychologist to assist with opti- adaptive function but also to the fact that comorbidities in- mizing strategies for home, school, and community settings.
crease in frequency with the severity of MR.
Families experiencing stress related to raising a child with a Individuals with mild MR can generally be expected to de- developmental difference may benefit from counseling ser- velop good self-help skills, and most will develop some aca- vices. Social Services/social work supports can help families demic skills. Some adults with mild MR achieve independent negotiate the many systems with which they will find them- living and employability. Children who would be described in the DSM-IV system as having moderate MR commonly have The list of potentially involved persons is extensive. Teach- more limited academic development but may achieve early ers, other school personnel, administrators, physicians, reading and mathematic skills. As adults, most individuals with nurses, and members of a child’s family and community also moderate MR need supported living and employment. Children play a role on the support team. Given the complexity of the with severe MR typically do not develop academic skills, and situation, it is important to think about what makes services their self-help and daily living skills may require ongoing super- work best for families. The work of the CanChild Centre for vision and/or support. Adults with severe MR do not live inde- Childhood Disability Research is instructive and worth re- pendently. Some can work successfully in sheltered work set- view by anyone working in the field of developmental dis- tings. Children with profound MR typically have limited verbal communication skills and need support for self-help and daily Mental retardation
living skills. As adults, some are able to do basic self-help skills 18. Sigman M, Dissanayake C, Arbelle S, et al: Cognition and emotion in such as feeding or dressing, but others remain dependent on children and adolescents with autism, in Cohen D, Volkmar F (eds):Handbook of Autism and Pervasive Developmental Disorders (ed 2).
New York, John Wiley & Sons, p 249, 1997 The usefulness of subcategorizing mental retardation is 19. Brownell MM, Yogendran MS: Attention-deficit hyperactivity disorder that it allows informed listeners to get a general sense of an in Manitoba children: Medical diagnosis and psychostimulant treat- individual’s expected level of function. However, within the ment rates. Can J Psychol 46:264-272, 2001 category of MR and within described subclassifications, there 20. Blanchard LT, Gurka MJ, Blackman JA: Emotional, developmental, and is room for enormous individual variability. Only very broad behavioral Health of American Children and their families: A reportfrom the 2003 national Survey of Children’s Health. Pediatrics 117: statements can or should be made about prognosis until an individual’s strengths and needs have been identified and 21. Hastinings RP, Beck A, Daley D, et al: Symptoms of ADHD and their supported and sufficient time has passed to allow a sense of correlates in children with intellectual disabilities. Res Dev Disabil 26: the developmental trajectory. It is critical that physicians rec- ognize the influences that expectations and intervention have 22. Aman MG, Buican B, Arnold LE: Methylphenidate treatment in chil- dren with borderline IQ and mental retardation. J Child Adolesc Psy- on outcome and avoid conveying an unduly negative out- look. In each contact, moreover, physicians should practice 23. Pearson DA, Santos CW, Casat CD, et al: Treatment effects of methyl- in a way that recognizes the importance of this message from phenidate on cognitive functioning in children with mental retardation the Canadian Association for Community Living: “All per- and ADHD. J Am Acad Child Adolesc Psychiatry 43:677-685, 2004 sons have inherent capacity for growth and expression. Every 24. Correia Filho AG, Bodanese R, Silva TL, et al: Comparison of risperi- done and methylphenidate for reducing ADHD symptoms in children person has the right to be nourished physically, intellectu- and adolescents with moderate mental retardation. J Am Acad Child 25. Murphy CC, Yeargin-Allsopp M, Decoufle P, et al: The administrative prevalence of mental retardation in 10 year old children in metropoli- 1. Diagnostic and Statistical Manual of Mental Disorders IV (ed 4). Wash- tan Atlanta, 1985 through 1987. Am J Public Health 85:319-323, 1995 ington, DC, American Psychiatric Association, 1994 26. Aman MG, Gharabawi GM: Treatment of behavior disorders in mental 2. American Association on Mental Retardation definition of mental retardation: Report on transitioning to atypical antipsychotics, with emphasis on risperidone. J Clin Psychol 65:1197-1208, 2004 27. Snyder R, Turgay A, Aman M, et al, Risperidone Conduct Study Group: 3. Luckasson R, Reeve A: Naming, defining, and classifying in mental Effects of risperidone on conduct and disruptive behavior disorders in children with subaverage IQ’s. J Am Acad Child Adolesc Psychiatry 4. Symposium: What’s in a name? Ment Retard 40:70-75, 2002 5. Devlieger PJ: From handicap to disability: Language use and cultural 28. Ruedrich S, Swales TP, Fossaceca C, et al: Effect of divalproex sodium on meaning in the United States. Disabil Rehabil 21:346-354, 1999 aggression and self-injurious behaviour in adults with intellectual disabil- 6. Panek P, Smith J: Assessment of terms to describe mental retardation.
ity: A retrospective review. J Intellect Disabil Res 43:105-111, 1999 29. Kastner T, Finesmith R, Walsh K: Long-term administration of valproic 7. Shevell M, Ashwal S, Donley D, et al: Practice parameter: Evaluation of the acid in the treatment of affective symptoms in people with mental child with global developmental delay. Neurology 60:367-380, 2003 retardation. J Clin Psychopharmacol 13:448-451, 1993 8. Szymanski L, King BH: Practice parameters for the assessment and 30. Oathamshaw SC, Haddock G: Do people with intellectual disabilities treatment of children, adolescents, and adults with mental retardation and psychosis have the cognitive skills required to undertake cognitive and comorbid mental disorders. J Am Acad Child Adolesc Psychiatry behavioural therapy? JARID 19:35-46, 2006 31. Mindell JA, Emslie G, Blumer J, et al: Pharmacologic management of 9. Murphy C, Boyle C, Schendel D, et al: Epidemiology of mental retar- insomnia in children and adolescents: Consensus statement. Pediatrics dation in children. Ment Retard Dev Disabil Res Rev 4:6-13, 1998 10. Online Mendelian Inheritance in Man. Available at: 32. Dodge NN, Wilson GA: Melatonin for treatment of sleep disorders in children with developmental disabilities. J Child Neurol 16:581-584, 11. Rourke, Byron: Syndrome of Nonverbal Learning Disabilities. New 33. Phillips L, Appleton RE: Systematic review of melatonin treatment in 12. van Karnebeek C, Scheper F, Abeling N, et al: Etiology of mental retar- children with neurodevelopmental disabilities and sleep impairment.
dation in children referred to a tertiary care center: A prospective study.
34. Graves P, Tracy J: Education for children with disabilities: The rationale 13. Moeschler J, Shevell M, and the Committee on Genetics: Clinical ge- for inclusion. J Pediatr Child Health 34:220-225, 1998 netic evaluation of the child with mental retardation or developmental 35. Zic A, Igric L: Self-assessment of relationships with peers in children with intellectual disability. J Intellect Disabil Res 45:202-211, 2001 14. Brenner D, Elliston C, Hall E, et al: Estimated risks of radiaition-in- 36. Guralnick MJ, Groom JM: The peer relations of mildly delayed and duced fatal cancer from pediatric CT. AJR Am J Roentgenol 176:289- nonhandicapped preschool children in mainstreamed playgroups.
15. Nordin V, Gillberg C: Autism spectrum disorders in children with 37. Buttimer J, Tierney E: Patterns of leisure participation among adoles- physical or mental disability or both: Clinical and epidemiological as- cents with a mild intellectual disability. J Intellect Disabil 9:25-42, pects I. Dev Med Child Neurol 38:297-313, 1966 16. Towbin K: Pervasive developmental disorder not otherwise specified, 38. Ryan PJ, Singh SP, Guillebaud J: Depot medroxyprogesterone and bone in Cohen D, Volkmar F (eds): Handbook of Autism and Pervasive mineral density. J Fam Plann Reprod Health Care 28:12-15, 2002 Developmental Disorders (ed 2). New York, NY, John Wiley & Sons, 39. Paransky OI, Zurawin RK: Management of menstrual problems and contraception in adolescents with mental retardation: A medical, legal, 17. Wing L: Syndromes of autism and atypical development, in Cohen D, and ethical review with new suggested guidelines. J Pediatr Adolesc Volkmar F (eds): Handbook of Autism and Pervasive Developmental Disorders (ed 2). New York, John Wiley & Sons, p 161, 1997 40. National Dissemination Center for Children with Disabilities Connec- S.E. Shea
tions to Sexuality Education. Available at: 41. Lumley VA, Miltenberger RG, Long ES, et al: Evaluation of a sexual abuse prevention program for adults with mental retardation. J Appl 44. CanChild Centre. Available at: Accessed July 42. Platt LS: Medical and orthopaedic conditions in special olympics ath- 45. Canadian Association for Community Living. Available at:

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