DISABILITY IN PERVASIVE DEVELOPMENTAL DISORDERS: A COMPARATIVE STUDY WITH MENTAL RETARDATION IN INDIA

ISSN: 0973-5755 DISABILITY IN PERVASIVE DEVELOPMENTAL DISORDERS: A COMPARATIVE STUDY WITH MENTAL RETARDATION IN INDIA Krishan Kumar*, V. K. Sinha**, B.L. Kotia*** and Sushil Kumar**** ABSTRACT Pervasive developmental disorders (PDD) are associated with significant intellectual and social deficits of the kind seen in mental retardation (MR). Unlike MR, lack of procedures or guidelines to quantify disability, persons with PDD do not get adequate social benefits. Hence this study was designed to assess the extent of disability in PDD using Assessment of Disability in Persons with Mental Retardation (ADPMR) meant for persons with mental retardation. Twenty children of two groups each with an ICD-10 diagnosis of PDD or MR were assessed with Indian Disability Evaluation and Assessment Scale (IDEAS), Assessment of Disability in Persons with Mental Retardation (ADPMR), Vineland Social Maturity Scale (VSMS) and Developmental Screening test (DST). Children with PDD were also administered Autism Diagnostic Interview-Revised (ADI R). Present study shows, with comparable IQ, children with PDD had significantly higher disability than those with MR in all domains other than self-care. Quantification of disability in children with PDD is as important as that for MR not only to provide disability benefits but also for better clinical care. ADPMR can be used to assess disability in children. Key Words: Disability Assessment, Pervasive Developmental Disorder, Mental Retardation, IQ * Medical & Soc. Psychology, Clinical Psychologist, Computational Neuroscience, National Brain Research Center (NBRC), Manesar, Gurgaon, Haryana ** Associate Professor Central Institute of Psychiatry, Kanke, Ranchi-834006. India. *** Professor & Head Dept of Psychology, JLN Marg, University of Rajasthan, Jaipur **** Project Assistant, Computational Neuroscience, National Brain Research Centre, Manesar

2 Krishan Kumar, V. K. Sinha, B.L. Kotia and Sushil Kumar Pervasive developmental disorders (PDDs) are neuropsychiatric disorders characterized by patterns of delay and deviance in the development of social, communicative, and cognitive skills (Koegel et al., 1983). The spectrum of PDD consists of Autism, Childhood disintegrative disorder, atypical autism, Asperger s syndrome, Rett s disorder and PDD not otherwise specified (American Psychiatric Association, 1994; Johnson et al., 2007). Because of the disturbances involved in communication, social interaction and repetitive behaviors, these children are prone to disabilities as severe as in children with MR (Lorna et al., 1977). Nevertheless, PDD differs from primary mental retardation in that the behavioral features and patterns of development are observed in multiple areas, highly distinctive, and not simply a manifestation of developmental delay. However, studies evaluating procedures or guidelines on quantifying disability in PDD and MR are scant. This status has more adverse implications for persons with PDD than those with MR because at least the latter is identified among the seven categories of disability in the Persons with Disability Act (Government of India, 1996), which guarantees equal opportunities, protection of rights and maximum participation to the disabled. As per this Act, the degree of disability in MR is expressed in percentages based on level of intelligence (IQ) on standardized tools and those with more than 40% disability are eligible for specific social benefits. Conversely, PDD as a clinical entity which requires significant support from social agencies is yet to figure in the Persons with Disability Act (Government of India, 1996), lack of such crucial for the statutory backing, persons with autism do not get most of the social benefits that are otherwise guaranteed to persons with disabilities. In this context more research is required to evaluate procedures to assess disability. A question arises whether the existing method of quantifying disability in MR on the basis of IQ can be applied to PDD? The answer is negative because children with specific PDDs are known to have significant deficits in adaptive behaviour despite normal intelligence. And, even in case of MR this method is not completely infallible, as IQ does not necessarily match with the actual adaptive behavioural repertoire. These problems could be circumvented by taking adaptive behaviour also into consideration. Essentially with this paradigm Nizamie et al., (2003) developed a scale called. Assessment of Disability in Person with Mental Retardation (ADPMR Scale), which is the only tool to quantify disabilities in the MR and PDD groups. The present study was designed to quantify disability in children with PDD in comparison to those with MR by using ADPMR Scale. METHODS Sample The present study was carried out in the Outpatient Department of Central Institute of Psychiatry and Deepshikha Institute of Child Development and

Disability in Pervasive Developmental Disorders:... 3 Mental Health, Ranchi, India for a period of eight months. Two groups of 20 children each with an ICD-10 diagnosis (World Health Organization, 1992) of either PDD or MR below the age of 17 years were included in the study with an informed consent by parents. Children with co-morbid attention deficit and hyperactivity disorder, conduct disorder, learning disorders, epilepsy and comorbid psychoses were excluded. Tools Vineland Social Maturity Scale-Enlarged Edition (Bharatraj, 1992) and Development Screening Test (Bharath Raj, 1977) were used to assess adaptive behaviour (SQ) and general development (DQ) respectively. These tools have sound psychometric properties and are extensively used in India as screening tools of intelligence and mental retardation (Jayashankarrappa, 1986). Autism Diagnostic Interview-R (Le Couteur et al., 1994) was administered to diagnose PDDs. For assessing disability, Indian Disability Evaluation and Assessment Scale (IDEAS; Thara, 2002) and ADPMR scale (Nizamie et al., 2003) were used. On both the scales higher the scores there would be greater the degree of disability. IDEAS was developed for measuring and quantifying disability in mental disorders. It comprises of four domains: Self-care, Inter Personal Activities (Social Relationships), Communication and Understanding and Work. Each domain is rated from 0 to 4 with a maximum score of 20, defining 0 as no disability, 1 7 as mild disability (i.e. < 40%), and 8 and above as moderate to profound disability (> 40 %). ADPMR scale measures disability in person with mental retardation. It comprises of five areas, namely Perceptual-Motor, Self-care, Communication and Social, Academic, and Occupational. Rating is based on direct observation of person with mental retardation and interview of primary care giver. The score of 40% or more is categorized as moderate, severe or profound disability (Nizamie et al., 2003). Procedure Clinical details were taken from case files supervised by residents and consultants with specialization in Psychiatry. Those with a clinical diagnosis of PDDs were assessed with Autism Diagnostic Interview-R. Both groups were screened for mental retardation using VSMS and DST, and evaluated for disability using IDEAS and ADPMR. Statistical analysis Statistical Package for Social Sciences for Windows Version 11.1 was used in this study, descriptive statistics, Kolmogrov-Smirnov Test to estimate the characteristics of the sample; t-test and Pearson s r were applied as per their basic assumptions. Journal of Indian Health Psychology

4 Krishan Kumar, V. K. Sinha, B.L. Kotia and Sushil Kumar RESULTS Children with MR had significantly higher mean age than those with PDD. There were no significant differences between the groups for domicile status, religion, socio-economic status, family type, SQ and DQ (Table-1). Significantly high disability scores were observed in ADPMR items, self care (p=0.056), communication (p=0.000), academic (p=0.003), occupation (p=0.000), and total disability scores (p=0.001) for the PDD group (Table 1). Lastly, all the domains of ADPMR and IDEAS show significant inter-correlations amongst themselves for the combined group of 40 subjects (Table 2). DISCUSSION Available data suggest to be the first study to quantify disability in PDD using specific disability related tools. The results indicate that despite comparable DQ and SQ, children with PDD had significantly higher degree of disability than those with MR. Major deficits were seen in communication, occupation, academic domains (Jacobson & Ackerman, 1990; Lord et al., 1993; Njadarvok et al., 1999; Turnbull et al., 2002) and self-care (Travis et al., 2001; Ruble, 2001). A qualitative analysis indicates that majority had disability greater than 40%, a cutoff required for availing benefits under the Persons with Disability Act (Government of India, 1996). This reaffirms the earlier findings that PDD is a severely disabling illness characterized by deficits in social interaction, self initiated and complex behaviors problems (Nordin & Gillberg, 1996). Significant correlations between IDEAS and ADPMR indicate that both the scales must be measuring the same attribute. However, lack of significant group difference in ADPMR self-care domain and perceptual motor domains contradict with the findings of its analogous domain of self care in IDEAS. It could be explained on the basis that IDEAS has some items, which are specific to adult psychiatric patients and might not be suitable for children. Hence, ADPMR scale can be used for assessing disability in mental retardation and pervasive developmental disorders. SQ and DQ revealed a very high correlation of.97, conveying similarities in Vineland s Social Maturity Scale and Development Screening Test. Both scores exhibited significant intercorretions with disability score of different domaims. Although limited by a small sample size and age difference the present study confirms the presence of significant disability in children with disability. ADPMR scale is useful in assessing aggregated disability in children with MR and PDD. REFERENCES American Psychiatric Association (1994). Diagnostic and Statistical Manual of Mental Disorders, 4 th edition. Washington DC: American Psychiatric Association.

Disability in Pervasive Developmental Disorders:... 5 Bharathraj, J. (1977). Manual on Developmental screening test. Mysore: Swayamsiddha Prakashana, 1-2. Bharathraj, J. (1992). Indian adaptation of Vineland Social Maturity Scale: Enlarged Version. Mysore: Swayamsiddha Prakashana. Government of India (1996). The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995. Ministry of Law, Justice and Company Affairs, Government of India, 1996. Jacobson, J. W. & Ackerman, L. J. (1990). Differences in adaptive functioning among people with autism or mental retardation. Journal of Autism Developmental Disorders, 20, 205-219. Jayashankarappa, B.S. (1986). Intellectual test and social adaptive behavioral scales used for assessment of the mentally handicapped in India. Journal of Personality and Clinical Studies, 2, 89-98. Johnson CP, Myers SM, Council on Children with Disabilities (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120, 1183-215 Koegel, R. L., Schreibman, L., O Neill, R. E., & Burke, J. C. (1983). The personality and family interaction characteristics of parents of autistic children. Journal of Consulting and Clinical Psychology, 51, 683-692. Le Couteur, A., Lord, C., & Rutter, M. (1994). Autism Diagnostic Interview-Revised: A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders, 24, 659-685. Lord, C., Bristol, M. M., & Schopler, E. (1993). Early intervention for children with autism and related developmental disorders. In schopler E, Van Bourgondien ME, Bristol MM (ed.) Preschool issues in autism, pp 199-221. New York: Plenum Press. Lorna, W., Gould, Y. R., & Brierley, M. (1977). Symbolic play in severely Mentally retarded & in Autistic children, Journal of Child Psychology & Psychiatry, 18, 167-178. Nizamie, A., Baxi, N. & Kumar, V. (2003). Assessment of Disability among Person With Mental Retardation. Paper presented at 29 th National annual conference of Indian association of clinical psychologist. RINPAS, Ranchi. Njadarvok, U., Matson, J. L., and Cherry, K.E. (1999). A comparison of social skill in Adult with Autistic Disorder, Pervasive developmental disorder not other wise specified, & mental retardation. Journal of Autism & Developmental Disorder, 29, 104-108. Nordin., V. & Gillberg, C. (1996). Autism Spectrum Disorder in children with physical or mental disability or both: Clinical & epidemiological aspects. Developmental Medicine & Child Neurology, 348, 297-313. Rondal, J.A (1987). Language development in exceptional circumstance (pp.49-73). London: Churchill Livingston. Ruble, L. A. (2001), Analysis of Social Interactions as Goal Directed Behaviors in Children with Autism, Journal of Autism & Developmental Disorders, 31, 471-482. Journal of Indian Health Psychology

6 Krishan Kumar, V. K. Sinha, B.L. Kotia and Sushil Kumar Rutter, L. C. M., & LeCouteur, A. (1994). Autism diagnostic interview revised: a revised version of a diagnostic interview for caregivers of individual with possible pervasive developmental disorder. Journal of Autism Developmental Disorder, 24, 659-685. Thara, R. (2002). Indian Disability Evaluation and Assessment Scale. India: Indian Psychiatric Society. Travis, L., Marian, S. & Ellen, R. (2001). Links Between Social Understanding & Social Behavior in Verbally Able Children with Autism, Journal of Autism & Developmental Disorder, 31, 119-130. Turnbull, A. P., Summers, J. A. & Brotherson, M. J. (2002). Family life cycle: Theoretical and empirical implications and future directions for families with mentally retarded members. In J. J. Gallagher, P. M. Vietze (eds). Families of handicapped persons, pp 45-65. Baltimore, MD: Brookes. World Health Organization (1992). The ICD-10 classification of mental and behavioural disorders: Clinical Descriptions and Diagnostic Guidelines. Geneva: World Health Organization. TABLE 1 Differences between MR and PDD groups in age, IQ and disability related variables. Item MR(N=20) PDD(N=20) t (Mean ± SD) (Mean ± SD) AGE (in months) 129.70± 42.07 81.77± 35.10 3.34** SQ (Adaptive Behavior) 48.1 ± 15.85 43.06 ± 16.47 1.07 DQ (General Development) 45.62 ± 15.84 39.82 ± 16.35 1.11 ADPMR Domains: Perceptual Motor 1.17 ±.78 1.27 ±.78.65 Self Care 2.00 ±.78 2.55 ±.94 1.91 Communication & Social 2.15 ±.85 3.20 ±.64 3.67** Academic 2.72 ±.64 3.40 ±.66 3.01* Occupation 2.42 ±.63 3.32 ±.71 3.50** Total Disability scores 10.47 ± 3.02 13.90 ± 3.28 3.19** IDEAS Domains: Self care 1.87 ±.82 2.45 ±.901 2.02* Inter-Personal Activity 2.10 ±.66 3.35 ±.59 4.53** Communication & Understanding 2.05 ±.76 3.55 ±.43 4.83** Work 2.35 ±.69 3.17 ±.69 3.28** Total Disability scores 8.37 ± 2.51 12.35 ± 2.36 4.31** ** p <.01 *p <.05

Disability in Pervasive Developmental Disorders:... 7 TABLE 2 Inter-correlation matrix of disability and developmental variables for the combined group of children with MR and PDD. (All correlations had p <. 01) ADPMR domains IDEAS domains DQ PM SC CS AC OC TD 1 SC IPR COM WK TD SQ.97 -.67 -.65 -.68 -.71 -.67 -.79 -.68 -.60 -.51 -.63 -.69 DQ -.68 -.66 -.65 -.71 -.66 -.78 -.66 -.59 -.49 -.60 -.67 P M.69.44.54.49.73.69.52.40.41.58 SC.66.73.74.90.64.63 -.54.54.67 CS.57.79.83.58.77 -.81.71.80 AC.81.85.59.67.62.62.71 OC.91.59.75.71.75.79 TD 1.73.80.74.73.84 SC.72.59.73.83 IPR.93.81.94 COM.78.90 WK.89 Legend for table 2: PM = Perceptual Motor SC = Self Care CS = Communication & Social AC = Academic OC = Occupation TD 1 = Total Disability score of ADPMR scale IPR = Inter-Personal Activity COM = Communication & Understanding WK = Work TD 2 = Total disability score of IDEAS Journal of Indian Health Psychology