Are We Really Inclusive!

It’s World Autism Day and my mail box is filled with reports and newsletters on autism. I have received numerous press releases from organizations on what they have done to support the cause – from podcasts and symposiums to having fun-fairs at special schools, the list of autism day dos is getting longer each year. As I read through these press releases, the only question that comes to my mind is - Are we really inclusive?

My soon-to-be 20-year-old’s fight against autism has been remarkable. He is entering third year of graduation at St. Xaviers College Mumbai. He is doing Information Technology and understands Coding, Python, Java, Mobile Applications, AI&ML – most of this is alien to me, gone are the days when I used to be a hands-on mom, when I knew about everything that he did in academics! His tutor, Dr Anand Upadhyay and the ubiquitous Ms Shah, his Special Educator, are bringing the best out of him. The teachers of Billabong High International Juhu nurtured him till Grade XII and now it is the faculty at St. Xaviers College Mumbai, who are going all out to support him.

However, getting here has been arduous. The battle began when my son was diagnosed with Autism in 2007 and no school was willing to give him admission. Only the doors of special schools were open for us. At that time Billabong High International was our only option (mainstream schools today are far more open and educated about special needs). Years later we were in a similar dilemma when he was ready for an under-graduate programme. Though colleges were willing to consider his application, none of them were ready to give him the support he needed. Most colleges equate autism with learning disability (the two of them are completely different) and end up offering the same support that is offered to a person with learning disabilities.

My son got admission in data sciences in a reputed college in Mumbai. I went to meet the head of the department to explain to him my son’s situation. I spent over 40 minutes explaining to him the difference between autism and learning disability. His concluding remarks were - “Don’t worry Madam, we have lot of students with learning disabilities.” There was another college which agreed to give him a writer for the entrance test, but he didn’t need one.   I told the admission-in-charge my son can write perfectly well he needs a prompter not a writer. After trying to explain several times I gave up and asked him to write the entrance test without any support. Since he is good with numbers, he scored 25/40 in Math but in English and Logical Reasoning he got Zero. He didn’t score in these subjects because he didn’t understand the questions. People on the autism spectrum have comprehension challenges, hence they need a prompter and not a writer.

St. Xaviers College, Mumbai, was open to giving him a prompter even for the entrance test for the B.Sc. IT programme and my son cleared the entrance! Merely asking a student whether he/her has disabilities in the application form isn’t enough. Educational institutions need to have a clear understanding about the various forms of disabilities and provide the required infrastructure. Unfortunately, we are still in a scenario where academic excellence matters more than anything else. Having a person with disabilities who may not have an outstanding marksheet to boast about is certainly not desirable for an academic institution. To provide the right kind of infrastructure to a person with intellectual disabilities would need a lot of investment in terms of time and capital. Do they have the wherewithal and more importantly the intent to invest? Most of them don’t feel the need to do so.  

The lack of intent to invest is apparent in organizations too. In fact, I was horrified to learn that many organizations don’t want to hire women in mid-level and senior roles because there could be maternity leave in the offing. Since maternity leave is paid leave, organizations look at it as an undesirable cost. No wonder only 1.6% of Fortune 500 Indian companies have women leaders at the helm.

One of the major reasons why women shy away from returning to the workforce post maternity is due to lack of proper care infrastructure. Organizations need to consciously create the right kind of ecosystem to have a gender-balanced workforce. The same goes for getting on board people with disabilities too. I happened to attend a workshop on autism conducted by a leading corporate a year ago. There were hours of deliberations on how having an inclusive work culture is good for business. When I asked them how many autistic employees they had in their workforce, they evaded my question. It was unbelievable.

Mere rhetoric on inclusion will hardly move the needle. People on the spectrum are focused and often their productivity is better than a neurotypical individual. One has to create a proper support infrastructure to get the best out of them. People on the autism spectrum are challenged in terms of social skills. They don’t like crowd. Many of them are sensitive to certain words. Some are sensitive to touch. Are organizations talking about including people on autism spectrum willing to invest in building this ecosystem? If people on the spectrum are assigned buddies they feel emotionally secured. Can organizations build a network of buddies within the organization?

Though I am not sure how many organizations in India are actually walking the inclusion talk, I must admit that I have come across quite a few who are making an earnest attempt of moving the needle. I am hopeful others will follow suit sooner or later. When my son was diagnosed with autism, the advice was to relocate to the US or to the UK, where the support ecosystem is well-defined. Me and my husband have no regret of our decision not to move, as our son despite all the challenges has done reasonably well. I am hoping the ecosystem will get better over time.