There are no sample surveys or population studies conducted in India that can give an indication about the prevalence and incidence rate of autism in the country.
In absence of valid data, professionals go by the prevalence data emerging from the United States and other countries, and extrapolate the same to Indian population. According to the latest report from the US, autism prevalence rate of autism is 1 in 68 births.
SOPAN has begun a prevalence study. We intend to conduct a sample survey of population from the Western region of India. Since we are located in Mumbai, we have taken Mumbai as a cluster where the survey will be done. We are, at present, doing a house to house survey of children (between one and nine-years) living in the slum pockets of the city. We have covered over 5000 homes.
The data is very small and hence not robust, but we have seen a trend that is not in consonance with what is being reported. While we have found nearly 50 children with other conditions such as intellectual disability, cerebral palsy, sensorial impairments etc., we could identify only 10 children with autism. This indicates a prevalence of 1 in 500.
The etiology of autism is still under study. Many causative factors have been proposed. Autism is neurological disorder. This means that the brain structure of children with autism is different than that of typically growing children. The neurological disorder may be a result of genetics andenvironmental factors (e.g. viral infection, metabolic imbalances and exposure to teratogens etc.) that affect the unborn child.
I have a child with autism. Is there any genetic test that my spouse and I can undergo before planning a secondchild?
Unfortunately, there is no such test available at present.
No. Incidence of autism is not limited to specific communities or sections of population. A child with autism can be born in any family regardless of the parents’ religion, caste, level of education and income. However, if the parents have a child with autism, it is highly possible that autism may occur in their second child too. According to research a number of genes are associated with autism. Thus autism may run in families, but not in a specific section of society.
Most children with autism manifest all features of the condition by the time they are 24 or 30 months. Hence, autism is diagnosed at this stage. However, the soft signs of autism such as lack of socially interactive behavior and play skills are present from very early on. Often they go undetected by medical professionals who look for delay in motor milestones as a risk factor for disability. Childhood Disintegrative Disorder has been known to manifest itself much later than 30 months.
Children with intellectual disability are significantly lower intellectual functioning than their typically growing age peers. As such their performance in all areas measured by an IQ test is much below average. Many children with autism have average or above average intelligence. Some who have below average intelligence may differ from their age peers who have same IQ scores. For example, an autistic child with IQ score of 50 may be functionally different from a same age and same IQ child with intellectual disability. The autistic child’s profile may show uneven pattern of skill acquisition. He/she may perform lower than the intellectually disabled child in some areas and show exceptional abilities in others.
There is no medical treatment that can cure your child of his autism. Autism is a disabling condition, not a disease. But early detection and intervention lead to positive outcomes. However, if the child has other disorders (e.g. blindness, intellectual disability etc.) along with autism he/she would require more support.
Children with autism show significant delays in development of language and communication, and social interaction skills. They have limited interest and need to learn play skills. Additionally, sensory issues and stereotypical behaviors come in the way of learning new things. In early childhood all children with autism require structured educational program that includes language and communication and sensory integration therapies. The program should be individualized to meet a child’s requirements. The need for this comprehensive program may vary with time depending on the functioning level of the child.
My child can speak well, but he merely repeats what he hears. Should we take him to a speech and language therapist?
A large number of children with autism are non-verbal. They can neither speak nor understand what others are saying. Then there are children like your child who can speak but tend to repeat what is heard. This is called echolalia. When a child is asked something he/she either repeats the question (instead of answering it) or repeats something that he/she has heard earlier. Echolalia is an indication of inability to understand what is being communicated. It shows that the child has a problem in comprehension of language. He/she needs language and communication therapy. The therapist would help develop comprehension by using objects, pictures and symbols etc. For the non-verbal children the therapist may introduce alternative and augmentative communication systems such as PECS and Makaton.
Inability to integrate information from sense organs is a challenge faced by most children with autism. Sense organs are our initial gateway to knowledge. We understand our world basically through the sense of vision, hearing, touch, taste, smell and movement. Due to the problem in integrating sensory information, children with autism may be hypersensitive or hyposensitive to certain sensory inputs. An occupational therapist may reduce this hyper or hypo sensitivity to sensory information using specific equipment and techniques. In the long run this intervention helps the child adjust to the environment.
Is special school the only option for a child with autism? Is it possible for my child to be admitted to a general school?
Inclusive education is now a global trend. With the passing of the Right to Education Act in 2009, the Govt. of India has made education a fundamental right of all children including those with disabilities. Now it is much easier for a child with special needs to get admission in general schools. Many schools have provision for resource rooms and appoint special education teachers and counsellors so that children with disabilities can get the required support.
There are so many intervention programs for autism. All of them report good result. How do I select one for my child?
It is a fact that many intervention programs for autism are available today. Information about them is easily available on the internet. Often in their anxiety to help their child, parents want to try all without ascertaining the worth of these programs. Many such programs report benefit but fail to mention that only a few children have gained from them. More often than not there has been no scientific research conducted to determine their effectiveness. As parents, you should opt only for such intervention programs that are tried and tested and have empirical data to support them.
Living at home with one’s family is always the best option for a child. Living with parents or family members who care is conducive to growth and learning in childhood. It is possible that with time as parents/caregivers age, they may find it difficult to look after and support an adult with autism. Living in group homes is a viable option at that stage. However, it is important that such group homes are situated in the community so that people with autism remain integrated in the community.
There are several institutes in India that provide vocational training. Most special schools have pre-vocational training as part of their curriculum. Many also have a section for vocational training. There is a range of employment options from open employment to sheltered employment and home-based employment. Students with autism are prepared for a given type of employment on the basis of their level of functioning. While all of them can be trained to work in sheltered employment, many high functioning people with autism are doing very well in open employment especially within the IT sector.
Marriage is a long term relationship between two adults who wish to spend their life together as companions. Emotional bonding and companionship are central to marriage. However, many Indian parents of people with disabilities (including autism) believe that marriage will solve all the problems. It would make their son/daughter mature and responsible, and it would reduce their responsibilities as the spouse will be share the burden of caregiving. Companionship and mutual consent, the essence of marriage is overlooked in such arrangements. Every human being has the right to long term and emotionally satisfying relationship such as marriage. But it should be with one’s choice and consent. If a person with autism wishes to get married, understands what marriage entails and has found a person who would want to spend their life with him/her, such a person should get married.
Only a certain percentage of people with autism are born with autism due to genetic factors. In most cases other etiological factors are involved. Hence, it is quite possible for a person with autism to have a perfectly normal child.
I have heard that some disabling conditions (e.g. Down’s syndrome) have an impact on the person’s life and longevity. Is it also true for autism?
No, autism does not have such effects on life expectancy. If your child is well looked after, he/she would have a normal life expectancy.
Anyone can be affected by mental health issues. Mental disorders can be caused and/or triggered by our psycho-social environment. Since autism is a neurological disorder, people with autism may be more susceptible to mental health problems.
Many schools run parent training programs on different issues of parenting. You can attend them regularly. Follow the school program and guidelines for behavior management at home. Try and get as much information on autism as possible. There are teacher training programs in autism being run at many institutes in India. If you have the time and willingness, enrolling in such a program will prepare you to become effective parent and teacher to your child.