Dear Sir:

At the outset, we would like to congratulate you and the Ministry of Social Justice and Empowerment for the decision to amend the Persons with Disabilities Act 1995 (PD Act). Its implementation in the last ten years has shown up the many areas for improvement in the Act. We trust that as a forward thinking government, the amendments will include changes in keeping with the report of the UN Convention for the Rights of Persons with Disabilities. The decision to invite suggestions from individuals and organizations for the amendments provides an opportunity to us to voice our views for bringing about the desirable amendments that can improve the Act and make it a fit instrument for social change.

You are undoubtedly aware of the recent incident when Ahed, a young child with autism, was prevented by a CISF security official from boarding an aircraft with his parents. Ahed was only allowed on after half-an-hour of protests from his distraught parents and intervention by a senior official. The parents were informed that since the child was ‘mentally disabled’ he would not be allowed to board under the Aircraft Rules as he would pose a ‘danger’ to other passengers. Later, the CISF quoted Section 24A of Aircraft Rule of 1937 states that:

‘No person shall knowingly carry or permit to be carried, or connive at the carriage of, a person suffering from any mental disorder or epilepsy in any aircraft.’

This is a situation that should not have occurred. However, it brings up a number of issues. This action eminates from a rule that is nearly 70 years old. The security official could have interpreted the rule with sensitivity but chose to do otherwise. We have many such regressive and outdated Acts still in existence. As long as they are there, there will be officials who will chose the narrow interpretation. This rule like many others needs to be severely amended.

However, this incident illustrates only the tip of the iceberg of the struggles that children with autism and their families live day in and day out. We take this opportunity to place before you the situation as it holds currently, and request your intervention on behalf of this marginalized community.

As you are aware, Autism is a neuro developmental disorder that is conservatively estimated to affect 1 in 500 individuals. However, based on current world figures for individuals with an Autism Spectrum Disorder, the numbers affected are 1 in 250. In India that equates to 2 million individuals rising to 4 million. Our experiences, as well as reports from other parts of the country, indicate a sharp increase in the numbers of children receiving a diagnosis of Autism Spectrum Disorder (ASD).

Autism affects the individual’s ability to process, understand and use communication andunderstand social rules, and is often accompanied by sensory defensiveness. The last comes along with proprioceptive and vestibular difficulties. As a result autism may manifest as unusual behaviours and mannerisms. This is, on occasion, accompanied by additional learning disabilities.

Individuals with autism display a marked unevenness of development. They may be intellectually able yet be functionally impaired. Physically most display no evident signs of disability. Autism is a therefore a ‘non-visible’ disorder. As a result a young child with autism may not be distinguishable from a child without autism, and the differences may only become evident to an observer after an extended period of familiarization with the child.

I give below a few examples of the situation for persons with autism in India:

EXAMPLE 1
Early Detection and Early Intervention is crucially important in the life of the child with atusim. It is universally acknowledged that:
Autism can be detected as early as 18 months
Early detection can lead to early intervention:
Early and appropriate intervention can ensure that many children with autism can be mainstreamed.

Apart from efforts by NGOs to disseminate information to medical professionals, very little has been done to ensure that children receive an appropriate, accurate, and timely diagnosis. As a result intervention starts late and many children lose the possibility of optimizing skills in the first few crucial years of their life.

Many in the medical field admit they do not have the information to diagnose autism. Organisations like Action For Autism have and continue to work in this area; but until concerted efforts are taken by the authorities to include autism in medical textbooks and otherwise educate doctors, this situation will endure.

EXAMPLE 2
The educational issues for children with autism are many. To mention just a few:
A large number of children with ASD who have the intellectual ability to attend mainstream school are denied this right. They are either denied admission, or asked to leave as soon as they receive a diagnosis, or asked to leave when the schools find it too much trouble to accommodate their special needs.

Many highly intelligent and able children with autism have difficulties with motor coordination. As a result some of them have difficulty in writing their papers during exam time. However efforts by parents for permission to allow their children use a computer to write for their exams are turned down.

Children and their families have no avenue for redressal. Since the PD Act does not mention autism, educational authorities are able to withhold permission, and parents are helpless to respond.

EXAMPLE 3
Parents have been taking affirmative action on behalf of the autism community. Beginning in 1994, there are now about 20 small schools in the country for children with autism. But since states do not need to take affirmative action, it is a daily struggle. Any support is obtained through individual effort. Only a handful of parents have the grit and the determination to take action. As a result the vast majority of children with autism in India receive no schooling whatsoever. If affirmative action were mandated, parents themselves would start many more schools.

EXAMPLE 4
One third of all individuals with autism have seizures. Families of these children spend in the region of Rs1500 on seizure medication every month. Families with the means spend this money as do many without the means who desperately try to raise this sum every month. But for the vast majority of families who are poor and of modest means, this remains a huge burden. Since autism is not a recognized disorder, even if the scope exists, many face difficulties in receiving reimbursement from their employers for this medical care and expense since Autism does not find mention in the Disability Act. Families stop the medication when they find the financial burden too much to cope with. As a result children do not learn and progress towards independence which they otherwise would have.

EXAMPLE 5
When discussing access in society, the discussion remains isolated to physical access like ramps and auditory signals. Individuals with autism appear to not exist as far as non discriminatory action is concerned. Yet discrimination in public places, in medical institutions, in educational institutions, in insurance schemes, and in getting a Disability Certificate, are a part of life for children with autism. The incident in Bangalore is just one example of this.

Since Autism finds no mention in the PD Act, a family with a child with autism is not entitled to a Disability Certificate. It follows that despite the enormous expense that families incur in the education and treatment of their children with autism, there are families deprived of the possibility of getting a concession on their income tax.

Since facilities are few and in isolated pockets, families often travel long distances with their child for treatment. But without a Disability Certificate they cannot obtain any travel concessions. Despite the desire to help their child, families with limited means eventually stop going for treatment.

Sir, Autism is not enumerated in the Persons With Disabilities Act despite the millions of individuals with ASD in the country. There are hundreds of Aheds going though hundreds of similar situations in the country every day. They are not all children of film actors and therefore do not rate a similar coverage by the media. They just quietly put up with the indignities that they routinely face. It is fortunate that Ahed’s parents, Beena and Prithviraj, are well known personalities, who despite their personal trauma used the situation to focus on what is a shameful situation persisting in the country.

I write as an educator and disability activist, but most importantly as a parent. My son Neeraj who is 26, has autism. Like many individuals with autism, Neeraj oftentimes has numbness in his wrist joint and likes to flap his hands to feel comfortable. We have been asked to leave public places because of his flapping. I had to take him out of a school because the principal thought he might become ‘violent’ when she saw him flapping his hands. A radiologist refused to carryout an urgently needed chest x-ray because Neeraj – then 11 years old - could not place his chin on the support at the very first try. There have been dozens of such situations which we learnt to put behind us and move on.

As a counsellor I have listened to a thousand families recount their daily tribulations at the hands of ignorant and insensitive members of society. But society is not ‘bad’. The insensitivity and ignorance is due to lack of knowledge and exposure. But must this be allowed to continue?

A crucial route for change would be inclusion of autism in the Persons with Disabilities Act. The Persons with Disabilities Act is a major step in empowering the persons with disabilities. If autism is again left out of the Persons With Disabilities Act it would be a huge injustice to the several million strong autism community - comprising individuals with autism, their parents and other family members, all of whose lives are touched by this enigmatic disorder.

The autism community has consistently followed a path of bringing about change without confrontation. We write with the hope that we can continue on this path. We hope that you will not turn a deaf ear to the pleas of this marginalized community.

Yours sincerely,
Merry Barua