On Autistic Pride Day, Here’s Why Your Awareness Matters

Posted on April 24, 2013 in Health and Life, Society

By Kimberley Fernandes:

At 3, Sparsh Gupta would cry a great deal of the time and was often frustrated. Being completely non-verbal by the time he was 38 months, made his parents contact the local paediatrician with a heavy heart. Though he presented symptoms as early as 19 months, it was during that trip to Dr. Rastogi’s clinic, that Sparsh was diagnosed with autism. His parents, Kabir and Seema had never felt so helpless — questions like “What could have been done to ‘prevent’ this ‘problem’”, “Could anything be done?!”, “Why us?”, “Why Sparsh”, “What next?”, “Will he be able to live a ‘normal’ life?”, “What about our unborn child — will s/he be autistic too?”, and many others along similar lines kept mushrooming.

4146730230_b3a38326a2All too often, we are faced with questions like these — What could have been done? What should be done? — And there aren’t enough solutions, or “right” answers. In my opinion, much like social stigma, the root cause of there not being enough solutions (in a sense), to questions like these, is owing to the lack of awareness. Just a few weeks ago, people globally celebrated Autism Awareness Day on the 2nd day of April. But as always, families like the Gupta’s and others within the autism community had debates as to whether “awareness” was the right terminology, and if “acceptance” or “equality” would be more appropriate.

For people who believe that the ‘outside world’ should be ‘aware’ by now — you’re probably living in your own little autism bubble and are wrong. I say that because to people like you and I (people who know someone who is autistic), it seems as though autism is in the news almost every day. This is because we are specifically looking for that news. People like Sparsh’s parents probably have a Google news alert set to inform them about all the autism-related news of the day. On Facebook too, many friends may be in the autism furrows, so our newsfeed is likely to be flooded with autism stories every day. These are the people who are obsessed with reading blogs written by parents or teachers of autistic people. To these people, the world may appear to be drowning in autism awareness.

That is to say, that one is only reading about autism if one wants to read about autism. For a typical person who tunes in to the evening news every day, checks in to Google News every now and then, and reads the newspaper daily, is probably not as aware about autism. When mulling over the types of and the frequency of autism-related stories that hit those sources weekly, it is clear that they are few and far between. The types of autism stories that do make the mainstream media usually fall into the following categories:

1. “Feel good” or inspirational stories about “regular” people showing an act of kindness towards autistic people.

2. Autistic children doing fantastic and extraordinary things.

3. Theories about causes and links to autism.

Being a student of Journalism myself, I am definitely not against any of these types of news stories. Each one is valid since they show an aspect of autism. Having said that however, reading about 4-5 stories like this monthly doesn’t make one “autism aware”, in my opinion. Having a day dedicated to autism awareness sort of forces mainstream media houses to cover a few more such stories; hopefully, some of these will be different in the sense that they will not fall within the afore-stated 3 categories.

It has been over a decade that the Gupta’s learned about Sparsh’s “condition”, and they face problems regularly. Take for instance the time Seema took Sparsh to the supermarket with her. 14-year-old Sparsh is really tall for his age and could easily pass off as a lad of 18. That is, until you look closely and see that his expressions aren’t “quite right” and he refuses to make eye-contact with anyone who tries talking to him. In Delhi, the first compartment of every metro is reserved for the female passengers and in some, there are guards stationed to chase away travellers of the opposite sex. Seema got into the first compartment with her son, only to be chastised by the guard there who told her to take her “man” to the general compartment. A very flustered Seema tried reasoning with him by saying that Sparsh was her son and she couldn’t leave him alone, but to no avail. The guard refused to listen and pressed a button to prevent the train doors from shutting. Sparsh too grew fidgety and escaped his mother’s grasp to try and walk away (he didn’t like it when people yelled). Getting really impatient, Seema had to yell at the guard to make him stop talking. “Mere bachche ko bimari hai. Main uss ko akele nahi chhod sakti! Aap ko doctor ke kaagaz sabut ke liye chahiye?!” (“My son is suffering from an illness. I cannot leave him alone! Would you like to see the doctor’s papers as proof?!”) This left a very red-faced to guard allow them to stay in the ladies compartment, not before brushing them away hurriedly.

The afore-stated is just one of the many instances Seema, Kabir and other parents of autistic children deal with on a regular basis. To them, the problems that parents of “normal” children face, (my 6 year old is failing spelling; my child is 4 and still has to wear a diaper to sleep; my daughter stutters while talking, etc.), are almost minuscule. However, for one month a year, especially on one particular day, people like you and me can try to force some degree of “awareness” down the typical world’s throats. Slowly, but surely, they (the “other people”) will become more and more “aware” of the problems that families of autistic kids (and autistic kids themselves) face regularly, and families like the Gupta’s will not be asked mundane questions like “How do you do it? How do you live like that? Isn’t it hard to deal with the fits of rages your child often has?”, because people would be aware. They would be aware of how things are done, what can be done, how they can help. Even if we need to “force it down” people’s throats for them to understand. During April every year, let us try to share our own stories — the high functioning and the low functioning stories, the medical stories, the political stories, the inspirational stories. The good, the bad, the ugliest of the ugly. Let such stories resonate with the mainstream media and the masses.

Photo Credit: BLW Photography via Compfight cc