|Year : 2022 | Volume
| Issue : 3 | Page : 218-223
Autism Services in Maharashtra
Alka Anand Subramanyam, Prajakta Sushil Patkar
Department of Psychiatry, TNMC and BYL Nair Charitable Hospital, Mumbai, Maharashtra, India
|Date of Submission||21-Jul-2021|
|Date of Decision||18-Aug-2021|
|Date of Acceptance||29-Aug-2021|
|Date of Web Publication||31-Oct-2022|
Dr. Prajakta Sushil Patkar
B-603, Bhawani Complex, Priyadarshini Mahila Housing Society, Dadar West, Mumbai - 400 028, Maharashtra
Source of Support: None, Conflict of Interest: None
Autism is a complex neurodevelopmental disorder consisting of a number of pervasive developmental disorders. Symptoms of autism spectrum disorders can often be very confusing and enmeshed with other neurodevelopmental disorders. This makes the diagnosis and treatment of these disorders quite challenging. Unfortunately, the awareness of this disorder is poor in not just general population but also in number of doctors, leading to such children not getting adequately and properly diagnosed. Early diagnosis can benefit the child to a great extent which can lead to a better quality of life for the patient and their family. Hence, an in-depth examination of these patients is a must which should include a holistic review from a number of different specialties. Patients diagnosed with autism also need a multidisciplinary mode of treatment which is not easily available. The Government of India also recognizes this disorder as a disability and provides multiple services and facilities for such individuals. Here, in this article, we have summarized all the various types of autism services in Maharashtra in the hope that this would be helpful for physicians to guide such patients for appropriate diagnosis and management.
Keywords: Autism Services, Maharashtra, Mumbai
|How to cite this article:|
Subramanyam AA, Patkar PS. Autism Services in Maharashtra. Ann Indian Psychiatry 2022;6:218-23
| What is Autism?|| |
Autism is one of the disorders included under the wide umbrella of pervasive developmental disorders.
Autism spectrum disorder (ASD) is a group of neurodevelopmental disorders. It includes a range of closely related disorders namely autism, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder–not otherwise specified, and finally Asperger's syndrome. All of them have a few distinct characteristics, but they grossly consist of repetitive behaviors along with problems in social and communication domains. Even though they can be diagnosed at any age, it usually presents itself in the early years of life and hence is often labeled as a developmental disorder.
It is often difficult to identify or recognize a patient of ASD; it is more related to the way they interact, communicate, and behave.
| Brief History of Autism|| |
Historically, ASDs existed but were always a confusing set of symptoms which until recently was never properly described till Bleuler named it so in 1911 where he described it as a part of schizophrenia characterized by withdrawal from reality. Leo Kanner, subsequently in 1943, described it more accurately through his paper “early infantile autism.” Surprisingly, in the same year as Kanner's hallmark publication, a Viennese pediatrician named A. Ronald worked on a similar set of “abnormal children” in Darjeeling in India.
During the early 1960s, autism started appearing in the Indian literature. By the late 1970s, a few centers started giving the diagnosis of autism to their pediatric patients, but there was still a very poor understanding of the disorder among the Indian medical professional circles and most of them thought of it as a form of mental retardation or intellectual disability. Because of the paucity of knowledge about this disorder amongst doctors, a lot of autistic individuals did not end up getting diagnosed and availing the necessary treatment appropriate to their needs.
From the 1980s till date, autism-related awareness and activities in India have grown by leaps and bounds. In 1991, a few like-minded parents got together and opened up an organization called “action for autism” by Merry Barua, which advocated for children with autism and spread awareness about the same. This was the first of its kind. Since then, autism in India has grown in numerous domains including diagnosis, treatment, educational options, parental involvement, vocational options, human resources, and legislation.
| Autism in the Indian Setting|| |
Many recent studies which estimated ASD prevalence rates in India documented it in the range of 0.15%–1.01%, with variations depending on the screening method used and the survey areas under consideration.,
The International Clinical Epidemiology Network (INCLEN) study stated the prevalence as 1 in 125 children in the age group of 3–6 years and 1 in 85 children in the 6–9 years age group. There were differences according to the area under study with 0.90% in rural areas, 0.6% in hilly regions, 1.01% in urban areas, 0.1% in tribal areas, and 0.61% in coastal regions.
Unfortunately, although the prevalence of autism has been on the rise, the number of cases, especially adults, still remains undiagnosed and is unable to access the necessary services.
Parents, primary caregivers, teachers, and physicians can all contribute to the timely diagnosis and early interventions of children with autism.
The average age at which Indian parents visit the doctor regarding autism-like concerns in their children is approximately 6–10 months later than other developed countries like the USA., The delay in approach can possibly be due to the fact that there are hardly any physical symptoms in the majority of autism cases.
| Need for Timely Diagnosis|| |
Autism, although not a degenerative disorder, is a severely disabling condition. It impacts not just the individual but also the caretaking family at large. A systematic review assessing global statistics gives evidence that ASD can be one of the leading causes of disability in children below the age of 5 years.
Even among more than 5-year-olds, it persists to be one of the major contributors of disease burden according to the global burden of diseases which measured it in DALYs.
Autism that causes learning and developmental compensation occurs throughout life. The developmental gains are mostly seen in the areas of communication. A small proportion of adolescents are behavioral. Studies say that only a minority of the people with ASD can live and function independently in society, and this coping is seen especially in those who have higher intellectual functioning and have the necessary social and emotional support. As they grow up, the persons with less impairment, although may function independently, tend to remain socially naïve and vulnerable. These group of individuals are more response to anxiety &depression as they find it extremely difficult to meet the practical and social demands of the society. Many of them end up using unhealthy coping strategies well into adulthood and then present at a very later age for diagnosis after having a work or personal breakdown.
Up until recently, there were no proper guidelines for diagnosis and treatment of ASD in India. In 2019, Indian Psychiatric Society published Clinical Practice Guidelines especially keeping the Indian population in mind.
| Setting Up Services for Autism Spectrum Disorders|| |
The essential thing to keep in mind while setting up services for helping children with ASD is that it requires a collaborative approach. Diagnosis and management of ASD require liaising with other professionals due to qualitative and quantitative variations in clinical presentation. Further, ASD affects multiple domains of development, and hence, treatment needs to be holistic keeping in mind the nature of the disorder. The interventions for every child need to be tailored depending upon the individual requirement of the child.
Ideally, a multidisciplinary team involving a psychiatrist, pediatrician, psychologist, speech and language therapist, occupational therapist, special educator, and genetic counselor is required.
- A psychiatric assessment: The screening of children with developmental delays is an extremely crucial step in diagnosing ASD. Management of psychiatric comorbidities in children with ASD along with the emotional distress of caregiver/parents is the crucial first step. The INCLEN tool and ISAA are recommended by the Government of India for ASD evaluation which are administered by the psychiatrist
- A pediatric assessment: It is extremely essential that any genetic syndromes or congenital disorders be ruled out. Pediatrician may be the first point of contact in a child with developmental delay or suspected ASD and its associated comorbidities such as seizures
- A psychologist's assessment: A comprehensive assessment of the current level of intelligence of the individual along with the strengths and weaknesses in various domains is necessary to determine the educational, occupational and vocational needs
- An audiologist and speech language therapist: To ascertain the communication and social interaction skills which are deficient in children with ASD
- An occupational therapist: An OT assessment is required to determine the gross motor, fine motor, sensory processing abilities of the child. An occupational therapist would assess the current level of child's development and lags in skills needing intervention
- A special educator would assess the educational needs of a child with ASD and ascertain the most favorable teaching methods in group as well as individual settings. A special educator would also be responsible for developing an individualized educational plan for children with autism catering to his/her special needs
- A genetic counselor would be essential to explain the heterogeneous genetic nature of ASD, the role of genetic testing, and the risk of recurrence in subsequent siblings [Figure 1] and [Figure 2].
| Autism Certification Process|| |
The Ministry of Social Justice and Empowerment issued Guidelines for Evaluation and Autism Assessment through Notification dated April 25, 2016. For identification of autism cases, the INCLEN tools shall be used. Now, we use AIIMS modified INDT (INCLEN Diagnostic Tool).
ASD diagnostic tool is used for ages 2–9 years. The Indian scale of Autism Assessment Program and Certification has been developed which provides the detailed assessment procedure and tools for assessing the extent of disability for persons with autism beyond 6 years of age. There are 40 statements which are divided under six domains, for which psychologists do a five-point rating for each item by observing the child and by interviewing the parents in order to assess Autism.
For the final certificate document, members from the following fields are recommended:
- A psychiatrist
- Clinical psychologist/rehabilitation psychologist
- A pediatrician or general physician as the case may be.
Based on the identification of cases of autism in terms of INCLEN tools, autism certification on the basis of ISAA tool shall be issued. The certificate would be valid for 5 years for those whose disability is temporary and are below the age 18 years.
The validity can be shown as “temporary/permanent” in the certificate, based on the age when the child has been assessed.
On the receipt of online application under Rule 19, the medical authority shall verify the information as provided by the applicant and shall assess the disability in terms of the relevant guidelines issued by the Central Government. Once the criteria are met, the medical authority shall issue a disability certificate in the individual's favor through the Unique Disability ID portal.
For applications other than online mode, the medical authority shall ensure that the application is digitized and transferred to the online channel and shall follow the same procedure as provided under sub-rule (1) for issuing disability certificates.
The Autism Disability Certificate shall be issued within a month from the date of receipt of the application by the medical authority.
| Concessions in Education|| |
The Central Board of Secondary Education has sent a circular to all their schools dated September 26, 2018, CBSE/COORD/112233/2018, with regard to the concessions for individuals with disability.
The Education Department of Maharashtra has also modified their notification dated October 16, 2018, for exemptions/concessions extended to persons with Benchmark Disabilities for Class X and XII Examination.
ASD-certified student should get following exemption:
- Flexibility in choosing subjects
- Relaxation of attendance (on request)
- Exemption in studying second language
- Examination room on ground floor
- Options of skill-based subject.
Many schools in Maharashtra cater especially to children with Autism. The names and contact details of these schools is listed in [Table 5].
| Rehabilitation Council of India|| |
The Rehabilitation Council of India Act 1992 (amended 2000) has set up an apex body to enforce uniform standards for human resources development in the field of rehabilitation of persons with disabilities in the country, enhancing the responsibilities of standardizing and regulating the training including a component on research in the area of rehabilitation and special education. There are other concessions provided by the government which are mentioned in [Table 2].
| The National Trust and The National Trust Act|| |
The National Trust is a statutory body of the Ministry of Social Justice and Empowerment, Government of India, set up under the “National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation, and Multiple Disabilities” Act (Act 44 of 1999).
The vision of this society is to create an inclusive society which values human diversity and enables and empowers full participation of persons with disability to live independently with dignity, equal rights, and opportunities. The various schemes for people detected with autism under the National Trust Act have been listed in [Table 1].
| Family Support Groups for Autism|| |
Most times, the families of persons with autism face exhaustion and are over-burdened. A few private organizations provide support for such caregivers.
Forum for autism
Address: Flat No. 1, Ground Floor Sorabh House, Garden Lane, Off Colaba Causeway, Mumbai - 400 039, Maharashtra.
Tel: 9029018100, 8080809116. E-mail: [email protected]
-Society of Parents of children with Autistic Disorder
Address: B.M.C. School Building, Natwar Nagar Road No. 5, Jogeshwari (E), Mumbai - 400 060.
Tel: 91-22-6504 3998, 91-22-2832 83550, 91-22-6504 39980, 91-22-2832 8351, 91-93232 02768.
| Centers for Autism Detection in Maharashtra|| |
Maharashtra has been slowly increasing the availability of facilities available for autistic children, though these are still largely centered in urban areas. The list of all the medical colleges and private centres in Maharashtra providing services for autism detection have been mentioned in [Table 3] and [Table 4].
| Conclusion|| |
As we can see there is a great need for centers in Maharashtra. There is an over-representation in urban areas, with hardly any rural presence. Further, the private centers are fewer and far between. Hence, there is scope for establishment and expansion of the same in both government colleges as well as private centers.
Maharashtra has often taken the lead in many aspects of healthcare, and we hope that this neglected area is easier to approach with this review and encourage psychiatrists to guide their patients and set up new centers following the multidisciplinary approach.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2]
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]