Augmentative communication

  

“Inclusion does not happen just by having some systems and processes in place. It requires a great deal of empathy and one to one connect between two individuals.” Perceptions of ‘dis”-ability create barriers to true inclusion. Instead of viewing inclusion as something that must be implemented. Dr.Mitu De approaches it from a human perspective and emphasises how inclusion can only occur via social acceptance. She also speaks about the challenges faced in higher education in India and YAAR- a social club.

                           Meet Dr. Mitu De, an Associate Professor by profession at the Department of Botany, Gurudas College, Kolkata, a parent of an autistic teenager and the present Secretary of Autism Society West Bengal (ASWB), a parent initiated not-for-profit organization.

    1) As an Associate Professor, who has been teaching for many years now, what are the problems that PWDs face in pursuing higher education in India?

                              Individuals with invisible disabilities like autism spectrum disorder encounter huge challenges when it comes to higher education. They may have reached higher education because of their academic prowess but they find the social environment very difficult to navigate.  There are a sometimes many dropouts among students with invisible disabilities as they find it tough to adjust and fit in.  The school environment is usually heavily structured and higher education is not. That is one of the first significant adjustments. For example in school, the child sits in one class and the teachers come to teach. While in a college or university, the students usually need to go to different rooms or departments for the classes. The seemingly mundane task of transitioning from one class to the other may need a lot of effort for students on the autism spectrum as their brain’s executive functioning is impaired due to neural circuit differences. This fact of neural differences are most often not taken into account and so there are no reasonable accommodations there which could be used for support.

                                              Second, people assume you do not need support when you have come to college. As the individual has completed his or her boards and it is assumed that they are competent to manage themselves. This assumption is detrimental to students pursuing higher education. The student may have had shadow teachers in schools, or probably needs more visual support. Sometimes notices are given at the last minute. They have a tough time to prepare themselves after reading the notices. For invisible difficulties, these challenges are exacerbated.

                                       Third, most of them do not have a formal diagnosis, especially autism. Some of them are very good at academics; the teachers may not know how to handle the situation when these students lack social understanding. Sometimes, the person does not want to disclose his/her diagnosis. As autism is a communication disorder often there is a lot of misunderstanding may happen between teachers and peers and these autistic students.  Bullying may also occur, like how it does with neurotypicals, with no ill intent but ends up with unintended consequences.

                      When a person comes with a diagnosis, then the teachers are mindful. It not only benefits the person as he/she gets some additional support but also benefits the teachers and other students because they now know why this student is behaving or talking in a different way. For example, some of the autistic students want to know so much about the subject that they end up asking a lot of additional questions which often takes up the allotted class time. Now if the teacher is aware of the students diagnosis, then they will be able to handle this situation and maybe answer the questions during another class like remedial classes or during free time. But most often they do not attend these remedial classes as they equate it with poor learning capabilities or learning disorders. Many do not avail the facilities of a psychologist/psychiatric, even when it is free. The resources are available, but because of the stigma associated with disability, they are not used. So, it is more of a mindset. Despite awareness initiatives, our society is prejudiced and the word "disability" has ingrained unfavourable connotations.

            We cannot put policies in place unless you have takers. For instance, CBSE offers additional time to complete the paper for students with disabilities. In one instance, the mother of an autistic student had advised her son to avail the additional time, but the boy refused. She even warned him that if he didn't take it, the person who needed it after him might not be able to get it in future. But the young adult refused. He argued that his friends did not need it, neither did he. The need to appear “normal” overrides everything. The feeling that it's my right and I must exercise it; is yet to come. Over time, the supports get withdrawn, if there are no takers for government accommodations. There must be a way to oversee these changes. There are reservations for those with disabilities, but after two to three years if no one uses them, they are often de-reserved into becoming open for general admissions.

2) Most times, the non-disclosure also takes a heavy toll on their progress and acts as an impediment to getting a degree?

                                  Yes, this is true. Sometimes when I go on invigilation, I find students asking naive questions, “Can I move on to the next question?” Some are not serious, and don't complete the paper. To elucidate, I am giving you this example. There was this bright student, in my department who went on to do post-graduation in the University. He was on the autism spectrum, but his parents did not want to acknowledge his disability. In the University he barely scraped through one of his first semester paper. I spoke to his teachers. He had attempted only one question, but had done it exceedingly well. When asked, he replied, “I was perfecting the diagrams. I didn't know there was a time limit. I didn't know I had to complete all the questions.” Here is a boy who had reached this far, doing post-graduation and then you wonder if this is some kind of joke. But he was so engrossed in making that one answer perfect. If only someone had advised him to allocate a specific time for each question or given him a visual timer, we could have avoided this. However, there is a good ending to this story. He is doing his Ph.D. Now, he realises he is autistic, and even when his parents don't want to acknowledge it, he has taken up self-advocacy seriously. His self-acceptance is amazing, and there is no pride or shame in it. I am who I am, he says. He has come a full circle. This process should start when one is young and can be expedited by society's acceptance.

 

       3) Could you tell us about the YAAR program.

          YAAR is the acronym for Young Adults with Autism Reach Out. YAAR, in Hindi means a friend. Mrs Indrani Basu-Founder Director Autism Society- West Bengal came up with the idea of a social club. This not-for-profit organization runs a small school for individuals with autism. It was noticed that although communication was an issue; the students were aware of their classmates, formed friendships, acknowledged each other, and had established a bond over the years. Mrs. Basu often told us that there was no place for adults like them to go to. He used to say that their circle of friends was small. They did not mingle with the neurotypicals, and did not have social relationships beyond the perimeter of the school. This sparked the idea of starting a social club for young adults with autism. That was the start of YAAR in 2014.

                     We simulated something similar. Through personal contacts, we started connecting with young adults in the age group of 20-30yrs. They would bring their musical instruments. There would be singing, dancing and food. Everyone had a good time, and we increased the frequency to once a month for 2 hrs. Students of some colleges signed up for this social club as volunteers. The first committed involvement of 1-2 enthusiastic volunteers was all that was needed to get the event going. Special educators, again in the same age group, were there for facilitating communication, especially for the non-verbal young adults.

                      Eight years ago, there was a lot of thought process in streamlining the agenda of these events. But as time went on, the volunteers evolved, the young adults took charge, and we gradually observed a paradigm shift as they began to take over the planning of the program. When we were gearing up for the next phase, the 2020 pandemic happened, then we moved online. We were uncertain of so many things. By April 2020, our students were a lot more comfortable with online classes. So, in May 2020, YAAR activities started online. 

                           Being online enabled the participation of old students, volunteers who had moved to other cities. We had an amazing time. People who were with us in the first year of YAAR could join. Everyone knew each other and were comfortable in their own space. Having completed 7 years, there was an online celebration where we released an E-magazine in 2021, where both our adults and the volunteers contributed to the drawings, sketches, and writings.

               YAAR is a common platform for both neuro-typicals and neuro-divergents with no mention of disability or ability. An equal footing for everyone. The non-verbal members participated in the discussion through pictures and PPTs. Sometimes there is a voice over or most times, the pictures were self-explanatory. In 2022 July, again, we began our offline sessions. Though autism is a communication disorder when individuals in YAAR were given alternate methods of communication, everyone understood each other.

   4) Could you tell us about the initial days of YAAR, and what were the challenges?

                           When we started, we had thought getting volunteers would be our greatest challenge. However, in reality, we faced some resistance from parents and volunteers were comparatively easy to find. Convincing parents that their children required time alone because they were no longer children but young adults took some time. We were asked a lot of questions. Will you be teaching something? Will they learn music? To convince the parents of a space like this, even for low support individuals, was a hard task. Can we observe? Can we accompany the kids? We told the parents, do not badger them with questions when they get back. Eventually, parents learnt to let go.

                        When we approached the volunteers; they told us they were on the lookout for such opportunities and did not know where to begin. YAAR gave a platform for the volunteers to learn how to connect with a person with an invisible disability.

   5) How do you handle the transition from a batch of volunteers to another?

                                There is an overlap, as there are batches coming from different institutions, so even when one set graduates from college, the old volunteers from another college remain and they help with the transition. Word of mouth does most of it, between seniors and juniors. The seniors handpick some of the juniors before they moved out. We have a group of coordinators who speak to the new volunteers over a couple of phone calls and help orient them. Young special educators are always present during YAAR as participants primarily and as facilitators, if needed. The ASWB management and senior staff stay in the background and are almost invisible. 

      6) What are your thoughts on inclusion?

   Inclusion is a hot topic right now. We ought to think, how should we go about it? It is a 2-way process and takes a lot of time. Inclusion does not mean you put some processes and systems in place and then call it an inclusive society. Getting to know other as individuals on a personal level takes time. One person at a time, one step at a time. 

          During the pandemic, we created a WhatsApp group for our YAAR participants. We posted the pictures taken during YAAR there. We saw after many participants took to sharing information other than YAAR in the WhatsApp group, just like we all do. Some shared vacation pictures or pictures of some food item they prepared themselves. Some musically inclined people shared audio or video clips of themselves playing some instrument. Talking can be stressful for a lot of our adults. WhatsApp gives you a lot of flexibility. The unspoken understanding is I have communicated with you. I have reached out to you and you can get back to me in your own time when you are comfortable. Adults share small videos and when they receive a response, it's a lot more gratifying. Lots of back-and-forth messaging happens as in all WhatsApp groups. We sometimes observe a lot of good morning and good night messages, but it is still communication as far as the young adults go. As volunteers change, the autistic participants over the years have also learnt, friends are not permanent, people move in and move out, but the feeling of friendship may endure. You can still stay in touch with them over WhatsApp. Technology like WhatsApp has been a boon to many autistic individuals, which have helped them to deal with their impairment in communication.

                                 Society rarely gives our adults with disabilities discretionary power. Our experience with YAAR has taught us when we give them power to decide what is to be done, it boosts their confidence enormously. They understand that they have the power to make a choice. They can enjoy on their own among people of their age group and can even have their own informal discussions or ‘adda’ as it popularly known in Bengali.

                          For a country as diverse as ours, there should be more tolerance. Ability/disability, be it anything, let us not be ashamed of who we are. The discrimination, as I mentioned, is deep-rooted and, what is worse, it is an understated unconscious bias we have. We can diminish it only when people on the polar ends are bought together and let time play its role. We cannot expect changes overnight. Social inclusion happens only when there are strong social relationships. When the family, community perceives a PWD as an asset. The penny drops, when the person himself believes so, only then will the change happen.

                      Different people have different perspectives. People with autism are wired differently, their neurocircuits are enormously different. It is a neurological condition. There is nothing right and wrong in the different perspective. We all need to be mindful and tolerant. Over a period, the person is changing, so is the society around him. Inclusion is an ongoing process, and requires a great deal of time, tolerance, acceptance, and empathy.

   7) Degrees don't guarantee a job, and many are unemployed. To facilitate employment, do we need to look at things differently, like changes in curriculum or emphasis on  industry specific training?

       Not getting a job in India is common. There is just one line of reasoning: college, graduation, and post-graduation. It is the mindset once more. There are a lot of polytechnics that have a lot of open positions. There are so many technical programs with no takers.

                  Many people with disabilities cannot complete schooling. Though there are avenues open in hospitality, culinary and other industry sectors, parents are unwilling to send their adults for such jobs and prefer they keep them at home. Society often looks down upon labour intensive mundane jobs at large. We often equate them with jobs only for the economically challenged. The dignity of labour is another deep-rooted thing in our psyche. A job is a job. We have problems coming to terms with that. Packing and stacking is another thing that people with autism can do, as many of them are like things to be organised.

               Of late, there are parents who are looking at things differently and are proactive. They feel engagement is some form is a must. Here is where the Job Coaches step in to make the transition possible.There are some aspects outside the job itself that can make the whole job thing tenuous in India, like commuting every day. Canteen hours, after office hours, all of this is highly unstructured and unless you have very good peer support, it can become difficult for PWDs. Job Coaches ensure that these factors are organised. Again, it is often the social world beyond the job that makes it overwhelming for the individual to continuing the job.

                 We at our school are training our people, trying to empower them with skills that they can have their own start-ups at their home. These are adults with high support needs and may not take up work in the open employment sector.

              Every individual with or without disability requires social supports in our lives. Individuals with invisible disability may need specific reasonable accommodations that will enable them to function optimally. When these supports are in place and are in demand by the people who need it, only then can we have inclusion in the true sense of the word.

                          Thank you, Dr. Mitu De, for this interview. In great admiration of the work you have done and continue to do.