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Aitraaz- Challenges with Autism in India

Aitraaz = Objection /əbˈdʒɛkʃ(ə)n/ (noun) an expression or feeling of disapproval or opposition; a reason for disagreeing.

In 2004, a movie called Aitraaz became a superhit and I remember a scene in which actress Kareena Kapoor says “Mujhe aitraaz hai” which translates to “I object”. I realize that I, as a parent of a child on the Autism spectrum, have aitraaz over the way autism treatments are being done in our country. I have aitraaz over professionals who do not update their knowledge about autism and still practice outdated protocols for years and years together. I wonder why we, as parents, are not aware of autism and its correct approach. This is precisely the reason why no one guarantees that our children will be remediated from the core deficits of Autism, although there are many fake people who promise even that just for money. Statistics in India show that there are over a staggering 10 million individuals on the autism spectrum of which not more than 15 percent achieve higher education or get jobs or are married. So, what bothers me as a parent of a child on the autism spectrum? Following are the things that I have aitraaz over:

1. Lack of Awareness
First of all, parents are not aware that their child may have autism. There is a deep-rooted problem in the basic understanding of the nature of the child which needs to be effectively handled. On the other hand, even professionals are not aware of the core issues present in the brains of these children.

2. Lack of Updated Knowledge
Families who get an autism diagnosis are not guided properly by professionals to the right services at the right time, many times it is delayed because of the lack of updated knowledge on the part of professionals. It’s high time we had autism therapists in India who are trained in Autism approaches. I have seen many doctors prescribing drugs to children with hyperactivity. As a doctor myself, I understand the plight of many doctors who have to treat so many patients and empathize with the families of these children too, but for a change, it will really be worth their efforts if they try to understand that behaviors and hyperactivity are a channel of communication for the child and giving medicines will only mask it and not remediate it at all. Hyperactivity and behaviors represent anxieties of continuously struggling with the uncertain world with a fragile brain. Also, Autism literature is not available in local languages and be it in whichever dialect- it is complex nevertheless, which can be overwhelming. There is also no focus and/or awareness on a caretaker’s training as it is the family who has to take care of their child for his whole life.

3. Lack of Hope
As parents, caregivers and professionals we have a fixed mindset that if the child is a special child, there is not much hope for him in the future or we can never raise the bar to compare with the skills of typical kids. Why can't we believe to bring these children at par with their peers? Just because we don't know how to excavate diamonds from the mine doesn't mean the diamonds don’t exist at all, right? 4. Expensive and Inefficient Treatments All the famous and somewhat effective therapies and therapists are extremely expensive. Most of the families, especially in India, cannot afford these treatments. The majority of the focus of the therapy is on skills training when the basic problem is lack of will. This inefficiency will only lead to loss of money leaving all the efforts in vain.

6. Time Constraints
In most families, both parents are working so there is no time for the child. Parents are exhausted and stressed out, they can’t help themselves let alone helping their child. Mother is ideally the one who understands her child well and the child learns easily from the mother; but in some cases, the mother is tied up in household work that there is no time left to spare for her autistic child. Also, a lot of time and energy is consumed in traveling from one therapy to the other.

7. Lack of Support
Within family: Most extended families are not very supportive of the autism family which not only demotivates but also puts more pressure on the family. There are families who also have a normal child along with a child on the spectrum and they tend to focus more on him, thinking about why to spend so much on the autistic child when the same money will be better utilized for other siblings' education. External Support: Our society does not understand autism and hence does not actively support families who have children on the spectrum. There is a lack of government support for families who need to provide continuous good quality therapies until the child is remediated. And in other issues, programs that seem genuine and effective are out of reach for a common Autism family.

8. School of Thought and Schools
There are many schools of thought about Autism online, it is indeed overwhelming and in the end- parents are confused as to what to follow? Speaking about schools, most school teachers are not trained in handling kids on the autism spectrum which makes it futile for the child to be there in the first place. The curriculum is not customized to the learning skills of the child. Most schools don’t have in-house therapists to take care if the child has any specific sensory needs. The child will just be ignored in class. These children are often teased and bullied in school because of their differences. Parents are then pressured to remove their child from school as the school cannot handle their child effectively. With undiagnosed children, when teachers tell parents about something being wrong with their children, parents often ignore the teachers and don’t take any initiative to support them.

9. Parents in Crisis Mindset
Most of the parents have hidden or diagnosed psychological issues out of having a child on the autism spectrum. Some parents try to avoid social functions in the fear of judgment from others about their child and his behavior. Even today many therapists do not allow the parents to see the therapies that their child is going through. Due to the lack of transparency in the treatment program, parents feel vulnerable and helpless. Also, most of the time, children do well in therapies at the therapy centre but not at home. Hence the parents are not able to understand their child’s behavior. Either they have no clue about it or they understand it wrongly. Some children have disturbing behavior and parents have to control it by either scaring or hitting the child as they know no other way to stop this behavior. Above mentioned are a few of the many things that bother me and they have been stated from my own personal experience as a parent and a medical doctor. I know that as parents, we are facing millions of problems to remediate our children which may feel like an endless journey. In my next blog, as a parent, a medical doctor and as an Autism Consultant, I will come up with solutions that will help all of us! Stay tuned. Cheers and have a great day!

-Dr. Dhanashri Pawar

Dr. Dhanashri Pawar (MBBS, DPH ) is the director of Divyam Centre For Autism in Mumbai, India. She is herself a parent of a child on the Autism Spectrum. As a medical doctor, she studied many interventions across the world to help her child in the best possible way and to empower herself to guide her child. In this journey she came across the RDI program and started doing it with her child, she saw marked improvements with him and hence decided to help other families with Autism spectrum. She became a certified RDI consultant and started her own charitable centre for learning for kids with Autism in Mumbai called Divyam in Mumbai, India in 2017. Till now she continues to help families and children with autism and build awareness about Autism in the community.