A Retrospection of Socio- Economic Profile of Persons with Autism Spectrum Disorder
ABSTRACT
Autism is a condition that is unique in many ways. Persons coming under the autism spectrum have difficulties in sharing thoughts, feelings, meanings, intentions and other mental experiences of living in the world. Generally persons with autism exhibit a unique set of symptoms in three areas viz socialization, communication and behaviour.
There has been a phenomenal rise in institutional infrastructure and reaffirmation of the commitment to the cause promoting empowerment of Persons with ASD. India is a developing nation having a social fabric with socio-cultural, religious, geographic, climatic and demographic variation.
With an objective of strengthening, streamlining as well as shouldering the needs of the persons with ASD, to empower the persons with ASD to out manoeuvre the hurdles in the form of challenges; to create a source as well as force for the empowerment of persons with ASD, NIEPMD who is also catering to the needs of persons with ASD started functioning from the year 2005.
It is a basic study and aims to find out the Socio economic profile of persons with ASD attending services at NIEPMD and to correlate the condition of Autism with the Socio- Economic profile. The study also focuses on various socio- economical variables of families of children with Autism Spectrum Disorder (ASD).
This study revealed that most of the children diagnosed with ASD are from Below Poverty line, hence there is a need to provide quality rehabilitation services to the children from poor socio- economic background and also the need to establish service centres in the rural areas, because most of the children with ASD are left unnoticed in the rural areas due to lack of awareness about Autism.
A Retrospection of Socio- Economic Profile of Persons with Autism Spectrum Disorder
Introduction
There has been a drastic wave towards rehabilitation of persons with autism spectrum disorder (ASD) after the efforts rendered from Action for Autism which has attracted attention of lot of professionals and parents. Creation of awareness towards ASD has seen lot of changes; media has handled the situation in a better way. Zee TV is telecasting a serial “Aapki Antara” based on the life and challenges of a girl with ASD and during the end of the programme they are depicting a brief interaction of parents who have children with ASD. Similar lines Mr. Karan Johar famour Producer Director of Bollywood movies has projected Mr. Shahrukh Khan as having Asperger’s syndrome in the movie “My name is Khan”. So definitely now there is good amount of information about the condition and the intervention approaches. There has also been an increase in the professionals undergoing training in ASD through Rehabilitation Council of India (RCI) approved programmes.
Autism is a condition that is unique in many ways. Persons coming under the autism spectrum have difficulties in sharing thoughts, feelings, meanings, intentions and other mental experiences of living in the world. Generally persons with autism exhibit a unique set of symptoms in three areas viz socialization, communication and behaviour.
ASD is a general term that includes the following disorders: Autistic Disorder, Asperger’s Disorder, Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS), Rett’s Disorder, and Childhood Disintegrative Disorder (CDD). In each of these disorders, social interaction is most commonly affected. The symptoms and characteristics of ASD can present themselves in a wide variety of combinations, from mild to severe. Although ASD is defined by certain sets of behaviours, individuals can exhibit any combination of the behaviours in any degree of severity. Persons with the same diagnosis can act very differently and have varying skills. Therefore, there is no standard “type” or “typical” person with ASD.
Modernization and urbanization have resulted in radical socio – economical changes and has given rise to new conflicts and tensions consequent upon the erosion of old age family and fraternal security. The very purpose of social security measure is to
give individuals and families the confidence that their level of living and quality of life will not erode by social or economic eventuality; provide medical care and income security; facilitate the victims to vocational rehabilitation; prevent or reduce ill health and accidents in the occupations; protect against unemployment by maintenance and promotion of job creation and provide benefit for the maintenance of every PWD.
There has been a phenomenal rise in institutional infrastructure and reaffirmation of the commitment to the cause promoting empowerment of Persons with ASD. India is a developing nation having a social fabric with socio-cultural, religious, geographic, climatic and demographic variation. This is of more significant in the context of subjects related to a marginalized and under privileged group. Despite economic constraints, India has a vision for all round growth and intends to enter into group of developed nations by the year 2020 (QRI). To achieve these ambitious targets, all sections of society not only including persons with disabilities but persons with ASD have to be included in the process of developing the nation.
With an objective of strengthening, streamlining as well as shouldering the needs of the persons with ASD, to empower the persons with ASD to out manoeuvre the hurdles in the form of challenges; to create a source as well as force for the empowerment of persons with ASD; to promote interdisciplinary and multi disciplinary management approach to cater the growing needs of persons with ASD, NIEPMD who is also catering to the needs of persons with ASD started functioning from the year 2005. The institute aims at enabling and empowering the persons with ASD, by offering a range of comprehensive services and also follows a zero rejection policy. The services offered by the Institute are predominantly centre cum home based programme. Services offered at NIEPMD are indented for clients from all parts of the country. This study is to find out the Socio economic profile of persons with ASD attending services at NIEPMD and to correlate the condition of Autism with the Socio- Economic profile. The study also focuses on various socio- economical variables of families of children with Autism Spectrum Disorder (ASD).The sample is taken from the year 2002 to 2009.
Review of the Literature
Victor D. Sanua, Department of Psychology, St. John’s University, Jamaica, N.Y mentioned that Kanner, in his 1943 article, reported that parents of autistic children tended to be of high socioeconomic status (SES).
According to Schopler, Andrews and Strupp, 1979 subsequent studies did not reveal similar findings. However, a careful analysis of these studies showed that in all instances the SES distributions of the parents were bimodal.
Subba Rao, T.A. , Ravindar, D, 2002 studied the characteristics of 28 children with ASD attending services at Composite Regional Centre, Bhopal, reported that most of the parents were highly educated and were from well to do family.
In a recently published study Malhotra et al, 2003 compared the socio-demographic and clinical profile of PDD patients registered at CAP Clinic, PGIMER, and Chandigarh between 1989 and 1999.
M. Juneja, S.B. Mukherjee and S. Sharma, 2004 reported that most children were from the middle class. This is probably due to the upper class persons with autism usually do not avail government hospital medical facilities. Parents from lower income groups may postpone seeking medical attention for disorders other than sickness. The observed boy-girl ratio was lesser than that reported in literature.
Amarnath, A, 2008, studied about the socio- economic conditions and the needs of persons with multiple disabilities in Thirupporur block of Chengalpattu taluk, Kancheepuram District of Tamil Nadu. Parents of persons with multiple disabilities are from low socio-economic strata and if provided with some income generation programme they families would be able to support.
Methodology
It is a basic study and aims to find out the Socio economic profile of persons with ASD attending services at NIEPMD and to correlate the condition of Autism with the Socio- Economic profile. The study also focuses on various socio- economical variables
of families of children with Autism Spectrum Disorder (ASD). All the children diagnosed as ASD from 2007 to 2009 by the Multi- disciplinary team formed the subject of the study. Information were collected through both structured and semi structured interviews from the parents by the multidisciplinary team during registration and assessment of the child. The data is computed and tabulated by using mean and percentage.
Procedure
All the children with ASD attending the services at NIEPMD from the year 2007 to 2009 were taken for the study. A detailed case history including the demographic details of the case and the parents are noted. This include name of the client, sex, age, source of referral, community, religion, family income, language, education and occupation status of the parents etc. All these information are collected directly from the parents.
For the analysis of the data the above information were classified into three profiles, 1. Personal profile (Variables used- Age, Sex, Order of the child, Diagnosis) Economic profile (Variables used- Education and Occupation of the father, mother, Family monthly income) Social profile (Family type, area of residence, religion, language spoken, school attending, state). The data has been computed and projected in percentages.
Results
A total of 45 children with ASD formed the subject of the study. Table- 1 shows the personal profile of the subjects in the variables of Age, gender, order of the child and the diagnosis. The study shows that 24 % of children are aged below six year and below and 60% of the children belong to the age group of 6-14 years and 16% of children belonging to the age group of 14 and above. The male female ratio in the study was 3:5 which also coorelates with the findings reported in NICHD 2001 census. The order of the child in the family reveals that 58% of children belong to the first born and 33% belong to the second born where as 7% third and 2% fourth born.
This shows that a considerable number of children with ASD were first born. However an indepth study on the relationship between the birth order and incidence of ASD will be focused as a separate study. The diagnosis of the children with ASD in the study shows that 58% of children are diagnosed as Autism with Mental Retardation, 29%
of children were as Autism, 11% belonging to Pervasive Development Disorder and 2% of children are Autism with Visual Impairment.
Table 2 shows that 93% of fathers and 27% of mothers are reported to be working of which 32% of the families had a monthly income of Rs. 10,000 and more and 31% of families income are in the range of 6500 to 10,000. 60% of father and 56% of mother had Diploma, Graduation and Post Graduation as their educational qualification. The data also shows that 68% of the clients are from poor socio- economic strata. The data reveals the fact that majority of the fathers are working (93%) and most of the mothers are Housewife (73%).
Table 3 shows that 87% of children with ASD belong to nuclear family residing in urban areas and semi urban areas while 9% of the children with ASD belong to joint families and residing in rural areas. Most of the children (93%) belonged to Hindu religion, 5% of children from Muslim region and 2% of children belong to Christian religion. The data also reveals the fact that most of the children (44%) are attending Special school and 27% of children are attending Normal schools, this correlates with the fact children with ASD would definitely benefit from Inclusive Education, but inclusion should not be forced upon them, the transition should be gradual an systematic. Further 76% of the children with ASD are from Tamil Nadu and 24% are from other states of India. Though the percentages of children diagnosed with ASD from other states are low, it substantiates the point that NIEPMD as a National Institute is yet to reach other parts of the Country.
Table 1. Personal profile of Persons with ASD attending NIEPMD services 2007- 2009.
AGE:
S. No Age Nos.
(N=45 Percentage
1 0-3 yrs 5 11
2 4-6 yrs 6 13
3 7-9 yrs 13 29
4 10-14 yrs 14 31
5 15- 18 yrs 3 7
6 Above 18 yrs 4 9
SEX
S. No Sex Nos.
(N=45 Percentage
1 Male 35 78
2 Female 10 22
ORDER OF THE CHILD
S. No Order of the Child Nos.
(N=45 Percentage
1 1st Child 26 58
2 2nd Child 15 33
3 3rd Child 3 7
4 4th Child 1 2
DIAGNOSIS
S. No Diagnosis Nos.
(N=45 Percentage
1 Autism 13 29
2 Autism with MR 26 58
3 Autism with VI 1 2
4 Autism with HI 0 0
5 PDD 5 11
Table 2. Economic Profile of ASD children attending NIEPMD Programme and service 2007-2009
Variables used:
• Father Education.
• Mother Education.
• Father Occupation.
• Mothers Occupation.
• Family monthly income.
Fathers Education:.
Sl. No Education Nos. (N=45) Percentage (%)
1 Illiterate – –
2 Primary 1 2
3 Middle 3 7
4 High 8 18
5 12th std 6 13
6 Diploma – –
7 Graduation 18 40
8 P.G 7 16
9 Ph.D 2 4
Mothers Education:
Sl. No Education Nos. (N=45) Percentage (%)
1 Illiterate 2 4
2 Primary 1 2
3 Middle 3 7
4 High 6 13
5 12th Std 8 18
6 Diploma 12 27
7 Graduation 11 24
8 P.G 1 2
9 Ph.D 2 4
10 MBBS 1 2
Fathers Occupation:
1. Working – 42/45 (93%)
2. Not Working- 3/45(7%).
Mothers Occupation:
1. Working 12/45(27%)
2. House Wife 33/45(73%)
Family Income:
1. BPL 17/45(38%)
2. 6,500 – 10,000 14/45(31%)
3. 10,000 – 20,000 7/45(15%)
4. Above 20,000 7/45( 15%)
Table 3. Social profile of ASD children attending NIEPMD programme and services 2007- 2009
Variables used:
• Family Type.
• Area of Resident.
• Religion .
• Language spoken.
• School attending.
• State.
Family Type:
Nuclear 39/45(87%)
Joint Family 4/45(9%)
Area of Residence:
Rural 1/45(2%)
Semi Rural 2/45(4%)
Urban 28/45(62%)
Semi-urban 14/45(31%)
Religion:
Hindu 42/45( 93%)
Christian 1/45(2%)
Muslim 2/45(4%)
Language spoken:
Tamil 38/45(84%)
English 0 (0%)
Hindi 1/45(2%)
Tamil + English 5/45(11%)
Any other 1/45(2%)
Attending School:
Normal 12/45(27%)
Special schools 20/45(44%)
Others 4/45(8%)
State:
Tamil Nadu 34/45(76%)
Others 11/45(24%)
Recommendations
This basic study was carried out to find out the whether there is any correlation of the parents who have good education, sound socio economic strata have children with ASD. But this study revealed that most of the children diagnosed with ASD are from Below Poverty line, hence there is a need to provide quality rehabilitation services to the children from poor socio- economic background and also the need to establish service
centres in the rural areas, because most of the children with ASD are left unnoticed in the rural areas due to lack of awareness about Autism.
Acknowledgement
The authors acknowledge Dr. K. Bala Baskar and Mr. Benjamin Victor of National Institute for Empowerment of Person with Multiple Disabilities (NIEPMD), Chennai for compiling the data and also editing the manuscript. We also acknowledge the support of the Parents of children with ASD attending services at NIEPMD for providing details and permission to use it for the study.
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