|
|
| Guest Profiles |
Read |
| Episode Summary: People With Disabilities |
Read |
| Living with autism: a parent’s story |
Read |
| Enabling change |
Read |
| Law & Regulations |
Read |
| One simple step to increase our GDP. |
Read |
| Talking words: How Orca helps the blind |
Read |
|
| |
| |
|
| Living with autism: a parent’s story |
| |
|
| |
|
|
| |
By Parul Kumtha
When our family sat down to watch Satyamev Jayate’s episode focusing on persons with physical disabilities, we felt very encouraged and heartened by their emergence beyond their disability to the extent that they are no longer defined by them. The one thing that struck me most about what everyone on the show stated so emphatically was the need for opportunity. It was clear to see that if given the opportunity, persons with disabilities can and will surpass them. They will educate themselves, fight for their rights and their place in society and stop being invisible... and the more this happens, the more acceptance there will be of disabilities.
And then I thought of my own son and millions like him in India – persons with autism. Autism, which is often referred to as ‘Autism Spectrum Disorder’ (ASD) because it covers a spectrum or band of problems ranging from a mild learning and social disability to severe impairment, with multiple problems and highly unusual behaviour, is the third most common developmental disorder, more common than Down’s syndrome with latest reports saying that about one in 88 children in the world have ASD.
Which means that in India, with its population of 1.22 billion, there are close to 14 million persons with ASD (ie equal to the population of Mumbai). Or, if we look at it from another perspective, given the average classroom in India has 60-80 students, there is a person with ASD in every two divisions in a school!
Where are all these children with ASD? Why are they not visible? Satyamev Jayate addressed this issue so well: they are not visible because there is so little opportunity available to them and as a result, so little acceptance. Let us examine why.
What is autism? Do you know someone who has it?
It is often difficult to spot a child who has this developmental disorder because a child with autism looks just like any other child and many children with ASD have some skills that are highly developed – often way beyond the age level. Yet, most parents have an inkling that this child is different, unusual and sometimes, difficult. Very often, parents observe a strong streak of independence in a very young, toddling child, eg the need to do things in a particular, fixed pattern or never needing the help of a parent or sibling to get to their toys and such... only on learning about autism do parents realize that these are actually symptoms of the disorder.
Some persons with autism are highly intelligent, some are average and many are below average. Whether they can be an integrated and contributing part of society is determined more by their ability to overcome impairments or disturbances in three main deficit areas, ie social skills, communicative (verbal as well as non-verbal) skills and in their repetitive and restricted behaviours, than by their intelligence.
Will the symptoms fade away; can the child be cured of autism?
In India, parents are afraid of labelling their child – we fear the stigma that is associated with a label. The fact that unusual behaviours are termed as ‘paagalpan’ does not help in the least. Our culture, irrespective of gender, caste, community, religion or social and economic standing, dictates that it is good to be typical and bad to be different. In such a milieu, well-meaning relatives and friends sway parents to postpone a diagnosis with homilies like “His father/uncle/cousin was odd too and didn’t talk or relate to people till the age of five” or “Don’t worry, some very intelligent people are a little weird – just look at Mr. XYZ the scientist” or even “You young parents have too much book knowledge and too little experience handling children – if you had been around young cousins, nieces and nephews, you would know that such behaviour is part of growing up”. In the process, precious time that could have been spent learning about ASD and helping the child cope with the issues and behaviours of this disorder is lost.
It is important to realise that at present, there is no cure for autism: there is no medication, no pills, no injections which can make the problem go away. The only consistently effective treatment for autism is a structured training programme; therefore, a combination of a good school and parent training is the best known treatment.
Autism cannot be caused
Because guilt is a major factor of every diagnosis of autism, I believe that it is my duty as a parent to spell out that autism is not caused by an unhappy home environment, both parents working, mental stress during the pregnancy, poor handling by the mother, an emotional trauma, or other psychological factors. No one can cause a child to become autistic. But the parents, immediate family, friends, neighbours, school environment… can definitely help every child with autism learn to cope with the disorder.
Get the right support – set out on the ‘Autism Adventure’
With early diagnosis, most children with ASD in India’s big metros attend mainstream schools and even those who cannot cope with regular academics attend special schools. But facilities for persons with ASD fall excruciatingly short both in quantity and quality for our ASD population of nearly 14 million.
Other Disabilities: lack of opportunities = low visibility = low societal acceptance
Autism: low societal acceptance = low visibility = lack of opportunities
The biggest challenge for our dear ones with ASD is even more daunting than the mere lack of opportunities: unlike persons with physical disabilities, even the best of academic and training facilities will not ensure employment and the visibility and acceptance that should follow, as it did with the many persons with physical disabilities who shared their experiences in the Satyamev Jayate episode. This is because persons with ASD need to learn social skills and to be a part of society. Skills that are second nature for all of us, no matter whether we are disabled or typical, skills we take for granted, are an uphill task for persons of even above average intelligence when they have ASD. These skills are not taught in school or even at home. For typically developing children, they come naturally but for the child with ASD, they need to be taught through hundreds of exposures to varying social situations. For our persons with ASD, societal acceptance needs to come first in order to pave the way for visibility and opportunity.
Here is where the right support comes in handy – not just support from doctors and therapists, which is important and has its place – but support from other families which are dealing with ASD too. This support is important because the homes and persons in these families are used to autism. In a group of like families outings, eat-outs at restaurants and picnics can be organised easily because the concerns of all families are similar. Being in touch with like families allows siblings, grandparents and parents to share concerns and jokes, have serious discussions and enjoy the lighter side of living with people with autism. It gives families comfort and familiarity and the assurance that they will not be ridiculed or brushed aside, because others understand their situation too well – sometimes better than blood relatives and childhood friends, confidants or counsellors.
I have been fortunate to have received such support, created for ourselves by many of us parents who were dealing with ASD. When our children were diagnosed, very little was known about this disorder and how to bring up a child with ASD. We had little options other than to evolve our own coping mechanisms and work out our own systems to deal with issues and behaviours that are part and parcel of ASD. Out of this struggle was born the parent support group, Forum for Autism.
Do your bit – empower the child with autism
If you know of any child who shows three or more behaviours shown in the pictorial chart, or if you are a parent, family member or well-wisher of a person with ASD, get in touch with: Forum for Autism at forumforautism@gmail.com, or 91-22-32949595, or post your queries on our Facebook page link.
On our advisory board, we have:
Dr. Vibha Krishnamurthy, Pediatrician, Specialist in Developmental Disorders
Ummeed Child Development Center, Ground Floor, Mantri Pride, 1-B, 1/62, N.M. Joshi Marg, Subhash Nagar, Near Chinchpokli Station, Lower Parel, Mumbai 400011.
Tel : 65528310/65564054 ummeed.org
Ms. Merry Barua, Director, Action For Autism
Pocket 7 & 8, Jasola Vihar, New Delhi 110025, India Phone: 91-11-65347422, 91-11-40540991, 91-11-40540992, website: www.autism-india.org/
Dr. Vrajesh P. Udani, Pediatric Neurologist
Appointments at Hinduja Hospital and Saifee Hospital (Mumbai)
Parul Kumtha, parent and founding member of Forum for Autism, can be contacted at parulkumtha@yahoo.com.
|
|
| |
|
|
|
|
|
|
the personal details that should remain private. (See our Terms of Service).