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PubMed1993

Autism and pervasive developmental disorders.

Autism and pervasive developmental disorder, not otherwise specified represent a complex developmental disability in which clinical signs include language delay, social unrelatedness, and unusual or restricted interests. Gradually a better understanding of these disorders as being neurologically-based developmental disorders with multiple etiologies has replaced the idea of emotional disturbance. Although pervasive developmental disorders are rare, the potentially devastating effects make early recognition by pediatricians imperative. Yet, despite promising treatment advances in education, communication technology, behavior treatments, and pharmacology, the prognosis for these disorders remains guarded.

Autistic Disorder↗

PubMed2005

A fitness program for children with disabilities.

BACKGROUND AND PURPOSE: This case report describes a fitness program for children with disabilities and provides preliminary information about the safety and feasibility of the program. CASE DESCRIPTION: Nine children, 5 to 9 years of age with physical or other developmental disabilities, participated in a 14-week group exercise program held 2 times per week followed by a 12-week home exercise program. Energy expenditure index, leg strength (force-generating capacity of muscle), functional skills, fitness, self-perception, and safety were measured before intervention, after the group exercise program, and again after the home exercise program. OUTCOMES: No injuries occurred, and improvements in many of the outcome measures were observed. More improvements were observed after the group exercise program than after the home program, and adherence was better during the group exercise program. DISCUSSION: This case report demonstrates that a group exercise program of strength and endurance training may be a safe and feasible option for children with disabilities. Further research is needed to evaluate the effectiveness of a group fitness program and optimal training parameters.

Activities of Daily Living↗

PubMedDate not supplied

Increasing students' sensitivity to families of children with disabilities.

Families of children with disabilities pose a particular challenge to nurses as each child and family is a unique combination of intellectual, emotional, and medical concerns. The authors describe a project in which families of children with disabilities serve as teachers to baccalaureate nursing students. The goal of the project is to facilitate sensitivity and an understanding of the needs of a child with a developmental disability.

Adult↗

PubMed1996

Use of melatonin in the treatment of paediatric sleep disorders.

A group of Vancouver health professionals, including the authors, have studied the use of oral melatonin in the treatment of chronic sleep disorders in children with disabilities since the Fall of 1991. This review article is based on the first 100 patients, half of whom were visually impaired or blind. Children with neurological, neuropsychiatric, and developmental disabilities are predisposed to chronic sleep-wake cycle disturbances. Disorders such as blindness, deaf-blindness, mental retardation, autism, and central nervous system diseases, among others, diminish the ability of these individuals to perceive and interpret the multitude of cues for synchronizing their sleep with the environment. Melatonin, which benefitted slightly over 80% of our patients, appears to be a safe, inexpensive, and a very effective treatment of sleep-wake cycle disorders. The oral dose of fast release melatonin taken at bed-time ranged from 2.5 mg to 10 mg. Side effects or the development of tolerance have not been observed. Since the causes of sleep difficulties are extremely variable, not all children are candidates for treatment. For successful melatonin treatment, clinical experience is required, and the influences of other health problems and medications need to be considered. Further clinical and laboratory research in this field is imperative because melatonin treatment offers enormous health, emotional, social, and economic benefits to society, especially since multidisabled children with chronic sleep difficulties do not respond well to current therapeutic regimes.

Administration, Oral↗

PubMed2000

[Mental retardation: social supports for people with metal retardation from aspects of individual and family life-cycle: introductory remarks] [In Process Citation]

In this symposium, the terminology and difinition of mental retardation were discussed. We examined theories and practices of social services, as well as policies for people with mental retardation from the aspects of individual and family life-cycle. Panelists at the invitation of this symposium were experts on this subject. They proposed new theories and made practical comments. The key words include the change of medical to social model; early diagnosis and intervention; medical care for children with severe disabilities at school-life and support for their family; career education and transition services; support with residential facilities and community-based approach; and empowerment of people with developmental disabilities.

Journal Article↗

PubMed1997

Prevalence of psychotropic and anticonvulsant drug use among North Dakota group home residents.

In a previous study, the present authors reported on the prevalence of psychoactive (psychotropic and anticonvulsant) medication use among people with intellectual disability residing in community settings in the state of North Dakota, USA. The present study replicates the earlier survey. A questionnaire was sent to all group homes serving people with developmental disabilities. Questionnaires were obtained for 100% of North Dakota group home residents. Psychoactive medications (anticonvulsants included) were used by 38% of the 1384 residents represented. The results are discussed in relation to the previous study from North Dakota.

Adolescent↗

PubMed1988

The value of Apgar scores in predicting developmental outcome at age five.

Although Apgar scores as indicators of physiologic depression in newborns appeared to have limited value in predicting developmental outcome, they remain attractive indicators of risk status because they are obtained routinely in this country. Unfortunately, most follow-up studies of the relationship between Apgar scores and outcome have been generally of short duration. Thus the long-term predictive value of Apgar scores is not completely known. In this study 111 otherwise normal full-term infants with 5 minute Apgar scores of less than 7 were enrolled prospectively in a follow-up program. Approximately 13% died (2) or had significant developmental disabilities (12) identified by 30 months of age. Sixty-seven percent of the children with these poor outcomes had a history of neonatal seizures. The remainder received an extensive developmental evaluation at age 5. The mean performance on psychoeducational tests of children without a history of neonatal seizures did not differ from that of a comparison group, whereas the mean of children who experienced neonatal seizures was significantly lower. Thus, low Apgar scores warrant developmental surveillance during the early years of life but, if unaccompanied by neonatal seizures, do not appear to predict more subtle developmental dysfunction evident at school entry age. However, seizures remain an ominous sign for significant early and late developmental sequelae.

Apgar Score↗

PubMedDate not supplied

Dental school Special Patient Care Program during 1977-1979 and 1987-1989: comparisons of regional and state disabled populations.

New patients referred to the Special Patient Care Program at UCLA School of Dentistry during the period of 1977-1979 were compared with new patients referred during the period of 1987-1989. Parameters measured were age, gender, geographic distance from the treatment facility, and primary disability. The UCLA profile of disabilities was then compared with local, regional, and state data on disabilities. The mean patient age decreased from 47 years of age in 1977-1979 to 34 years in 1987-1989 while gender distribution remained approximately the same. The distance from patient's residence to the dental treatment facility increased from the 1977-1979 period to the 1987-1989 period with more new patients traveling over 5 miles for treatment. The 1987-1989 special patient care new patient population was highly representative when disability type was compared with a juvenile population (less than 21 years of age) from the five Regional Centers in LA County and the LA County and State of California Department of Developmental Disabilities populations. The patient training base of an undergraduate dental school program for persons with disabilities is representative of the disabled population of LA county and the state of California.

Adult↗

PubMed1992

Compliance and quality in residential life. Limitations of regulations as a means of social reform in developmental services.

It has become obvious that community care systems for people with developmental disabilities are not fully realizing some of the stated goals toward which they are directed, despite great process. The foundations and processes by which state agencies regulate and whether the regulatory process can be directed to issues affecting the quality of life of people receiving developmental services were explored. Limitations and side effects of regulations were discussed with respect to the unpredictability of long-term effects, problems in measuring compliance, economic rather than social focus, the changing state of knowledge, and special considerations associated with the field of developmental services.

Activities of Daily Living↗

PubMed2003

A population-based study of the effects of birth weight on early developmental delay or disability in children.

Improving medical treatment of extremely low-birth-weight infants over the last 20 to 30 years resulted in increased survival rates. The developmental sequela of salvaged infants is of great interest to perinatologists. The primary purposes of the current study were to assess the effect of birth weight (BW) on developmental delay or disability (DDD) in the first three years of life and determine whether there is a BW threshold below which all infants should be evaluated to determine if intervention services for children with DDD should be received. Three statewide databases were merged: 1998 Birth Vital Statistics; 1997-1998 Medicaid eligibility files; and 1998-2001 Children's Medical Services' Early Intervention Program (CMS-EIP) data. Infants who died within the first year of life and plural births were excluded. The final dataset consisted of 170,874 records. A child was determined to have a DDD if a developmental delay, or an established condition, such as sensory impairment, genetic, metabolic, neurological, or severe attachment disorders, was diagnosed through a multidisciplinary evaluation. Logistic regression models were used to relate BW to DDD, controlling for sociodemographic, behavioral, and perinatal variables. Adjusted odds ratios (OR) were calculated to describe the effects of BW on DDD. There was a significant effect of BW on DDD (Adjusted OR &equals 97.50, 40.01, 15.84, 3.29, 1.39, 1.00, 1.52 for BW categories 450-749, 750-999, 1000-1499, 1500- 2499, 2500-2999, 3000-4749, 4750-6050 g, respectively). In these categories, 70%, 56%, 36%, 11%, 4%, 3%, and 6% of surviving singleton infants, respectively, suffered a DDD in their first 3 years of life. Four medical, five sociodemographic, and two behavioral factors were significant in addition to BW. An equation for predicting the probability of DDD given these factors was obtained, and its use exemplified. BW is strongly associated with DDD. Over 60% of infants weighing < 1000 g and nearly half (46%) of those weighing < 1500 g at birth are diagnosed with a DDD before 3 years of age. The probability of DDD for a specific infant also varies by sociodemographic, other perinatal, and behavioral factors. The results of this paper suggest that all surviving infants of BW < 1000 g, and perhaps < 1500 g, should be automatically referred for evaluation.

Age Distribution↗

PubMed2003

Autistic-like behaviour profile and psychiatric morbidity in Fragile X Syndrome: a prospective ten-year follow-up study.

In subjects with Fragile X Syndrome (FXS), the mutation of Fragile X Mental Retardation Type 1 ( FMR-1) gene at Xq27.3 predisposes to Mental Retardation (MR), autistic-like behaviour and to a variety of psychiatric syndromes. However, the longitudinal course of autistic-like behaviour profile and psychiatric morbidity is untested. In this study, we followed up people with FXS for 10 years to establish the stability of their autistic- like behaviour profile and psychiatric morbidity. The autisticlike behaviour profile was assessed using Brief Disability Assessment Schedule (B-DAS) and relevant items from Handicaps, Behaviour and Skills (HBS) Schedule. The psychiatric morbidity was assessed using data from the case notes, Mini Psychiatric Assessment Schedule for Adults with Developmental Disability (Mini PAS-ADD) and clinical interview. Our findings suggest that the autistic-like behaviour pattern is a stable phenotypic feature of FXS, but for increase in resistance to change over time. There is a tenfold increase in the prevalence of psychiatric morbidity in FXS compared to the general population, which does not increase significantly over time.

Adult↗

PubMedDate not supplied

Special issues in contraception: caring for women with disabilities.

Women with disabilities make up a diverse population of underserved clients needing skilled, sensitive, and culturally-competent contraceptive care. Barriers to care for these women are structural, attitudinal, and informational, and lack of attention to their needs is also reflected in limited research and clinical guidelines. Special techniques for a modified gynecologic examination can be employed, and disabled women can work in partnership with providers to promote comfort, respect, and safety. There are specific considerations for the use of different contraceptive methods in women with movement limitations, sensory impairments, seizure disorders, developmental disability, and emotional and psychiatric disorders. A climate of welcoming respect as well as clinical expertise in issues specific to this population can enhance the ability to provide contraception to these women.

Contraception↗

PubMed2005

Modeling clinical outcome of children with autistic spectrum disorders.

OBJECTIVES: Autistic spectrum disorders (ASD) have variable developmental outcomes, for reasons that are not entirely clear. The objective of this study was to test the clinical observation that initial developmental parameters (degree of atypicality and level of intelligence) are a major predictor of outcome in children with ASD and to develop a statistical method for modeling outcome on the basis of these parameters. METHODS: A retrospective chart review was conducted of a child development program at a tertiary center for the evaluation of children with developmental disabilities. All children who had ASD, were seen by J.C. between July 1997 and December 2002, met Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) criteria for autism or pervasive developmental disorder (referred to hereafter as ASD), had undergone at least 1 administration of the Childhood Autism Rating Scale (CARS), and had at least 1 determination of developmental quotient (DQ) or IQ (N = 91) were studied. The sample was 92.3% male and 80.2% white. METHODS: The DSM-IV was used to confirm that each patient met criteria for a diagnosis of autism or pervasive developmental disorder. The CARS was used to quantify the severity of expression of ASD. Age at evaluation, CARS score, and DQ or IQ at each visit were extracted from the medical record. The 2 independent sample t test or the Mann-Whitney test was used for comparing CARS and age between 2 groups: first recorded DQ or IQ <0.70 (n = 58) versus first recorded DQ or IQ >or=0.70 (n = 33). Associations among CARS score, IQ or DQ, and age were examined using Pearson or Spearman correlation. A mixed-effect model was used for expressing the multivariate model. Length of follow-up (period) was calculated by subtracting age in months at initial evaluation from age in months at each follow-up evaluation. Therefore, at first evaluation, period = 0. Period was considered as a random effect because collection of repeated information from patients was not uniform. The predictive relationships among CARS, age at first evaluation, period, and DQ or IQ group (<0.70 and >or=0.70) were examined using a mixed-effects model. Variables that were expressed as percentage change between first and last measurements were analyzed using the t test or the Mann-Whitney test. Socioeconomic status was assessed using Hollingshead criteria. RESULTS: All patients met DSM-IV criteria for ASD. Mean age at initial evaluation was 46.2 months (SD: 23.7; range: 20.0-167.3 months). Mean CARS score at initial evaluation was 36.1 (SD: 6.3; range: 21.5-48). Mean DQ or IQ at initial evaluation was 0.65 (SD: 0.20; range: 0.16-1.10). There was no significant difference in socioeconomic status between DQ/IQ groups. CARS scores among children with an initial DQ or IQ <0.70 showed no significant decrement with time. In contrast, CARS scores among children with an initial DQ or IQ >or=0.70 showed a significant decrement with time, which could be modeled by the formula CARS = 37.93 - [(0.12 x age in months at first visit) + (0.23 x period)]. The predicted CARS scores generated by this model correlated with the observed values (r = 0.71) and explained 50% of the variability in the CARS scores for this group. CONCLUSIONS: These data provide preliminary validation of a statistical model for clinical outcome of ASD on the basis of 3 parameters: age, degree of atypicality, and level of intelligence. This model, if replicated in a prospective, population-based sample that is controlled for treatment modalities, will enhance our ability to offer a prognosis for the child with ASD and will provide a benchmark against which to judge the putative benefits of various treatments for ASD. Our model may also be useful in etiologic and epidemiologic studies of ASD, because different causes of ASD are likely to follow different developmental trajectories along these 3 parameters.

Adolescent↗

PubMed2003

Occupation choices of adults with and without symptoms of dyslexia.

People with the learning disability developmental dyslexia characteristically have difficulties in processing written language. There is some evidence that they may also have talents in other areas such as visuospatial processing. This pattern of strengths and weaknesses may predispose people who have dyslexia towards adopting certain occupations and away from others. Although there is literature on career choice in learning disabled adults in general, relatively little work has been done specifically for dyslexia. We therefore compared the occupations of adults with and without symptoms of developmental dyslexia. Results were analysed using non-parametric statistics and are illustrated with a case study. We found significant differences in the distribution of our samples. Adults with symptoms of dyslexia were much less likely than adults not reporting such symptoms to be involved in professions such as science/computing, management and finance. They were more likely to be involved in people-oriented professions such as nursing or sales. While preliminary, these results suggest that people with dyslexia may indeed show significantly different patterns of occupation choice.

Adult↗

PubMed1990

The developmental record: reliability and validity in a clinical population.

Currently, the Developmental Record is widely used with developmentally disabled adults, at least in the midwestern and southwestern region of the United States. Since it inception in 1974, there have been no subsequent reliability and validity studies confirming its clinical usefulness. For the present study a total of 1,069 Developmental Record protocols were obtained from archival files of a large midwestern facility for mentally retarded persons. Analyses revealed high internal reliabilities, but questionable validity. Specifically, the subscale structure of the instrument was not confirmed by the factor analysis.

Disability Evaluation↗

PubMed1980

Teleconference and videotape as teaching tools for multi-university instruction.

The combination of several existing technologies and application of them in a regional inter-university series of training programs is described. Using teleconference and videotape, the Central Conference of University Training Programs in Developmental Disabilities has provided its 15 member centers with a set of training materials that would be unavailable to them on an individual basis. Six program series have been produced and a seventh is being planned. The developmental process and the techniques employed are discussed.

Audiovisual Aids↗

PubMed2003

"This is a Spiritual Experience": perspectives of Latter-Day Saint families living with a child with disabilities.

The presence of a child with disabilities elicits a variety of stress demands on the family. Religion is recognized as a powerful personal, family, and cultural variable. However, little is known about the influence of religion in dealing with disability among families within particular religious groups. This descriptive study explored themes of spiritual belief and religious support among families of the Church of Jesus Christ of Latter-Day Saints (LDS, or Mormon) with a child with developmental disabilities. Parents shared perspectives of meaning that emerged from experiences with religion and family beliefs perceived to be unique. The core theme, "This is a Spiritual Experience," provides the foundation for a descriptive model that depicts aspects of finding meaning and perceived transcendence.

Adaptation, Psychological↗

PubMed1984

Research in mental retardation in the German Democratic Republic (GDR).

Research in mental retardation in the GDR has been influenced primarily by the brain damage--development theory, which assumes biological as well as social determinants in human development. The theory was based on the results of brain damage (encephalopathy) research, which distinguishes between primary and secondary symptoms of mental retardation. The importance of social factors such as family conditions for development was demonstrated in a variety of studies, including research with adopted children. Positive results have been achieved with early education programming for developmentally disabled children, as well as with medical treatment for some genetically induced metabolic disorders. Results from longitudinal studies suggest that intelligence continues to develop in educable mentally retarded adolescents. New diagnostic methods have been developed; test of motor skills, visuomotor coordination, and a developmental test for young infants. Further developments of traditional school entrance diagnosis for special education classes is reported. Several studies show that there has been some success in the vocational and social integration of mentally retarded persons in the GDR.

Adolescent↗