Triveni Goswami Vernal
(Registered Special Educator CRR: A64010)

April is designated as World Autism Awareness Month and April 2nd is celebrated as World Autism Awareness Day, every year. There are several events organized around the world to celebrate the unique abilities of individuals with Autism, as well as to create awareness about the Autism Spectrum.

But while doing so, we must keep in mind, that Autism is after all a spectrum and not all families experience Autism, in the same way, as everyone else. For some, Autism comes with several medical co-morbidities, and that creates very complex experiences for the individual as well as the caregivers, looking after the individual.

In addition to this, caregivers more often than not, experience various degrees of guilt—there is always so much to do, and there seems to be so little time to do it all. Individuals with Autism have different skill sets and each individual is unique in the way they experience and interact with the world around them. So, working with a specific skill set, takes an immense amount of effort on the part of the caregivers to customize the support systems required for the individual to thrive to the best of his or her potential.
Caregiver Guilt is very real and is often brushed under the carpet, with very little attention given to it. It can often stem from the “feeling of not doing enough”, of being completely overwhelmed, of being frustrated and angry with the feeling of being “stuck” in life, of not being supported enough at home or at work, and not being able to engage in activities of self-care.

As a parent and caregiver of a 14-year-old on the Autism spectrum with communication challenges, I honestly feel that there is no shame in expressing one’s anger, frustration and sadness- on feeling left out, of missing out on things that our peer group can engage in (without a fuss), on not being able to pursue  a full time career, or the feeling of being stuck in a situation bound by choices that have been made, keeping the child’s additional needs in mind. But that being said, it does not mean, that we should stop living life. There is a LOT that still can be done.
1) Self-Care is paramount—Take some time out, every day, to engage in an activity you like—could be speaking with a friend/family, watching tv, listening to music, reading a book, pampering oneself etc.
2) Work Out/Exercise—The other day I came across a quotation by another mum of a child on the spectrum, who said something on the following lines, “While I would love to die for my children, I would also love to live for them.” It is extremely important to look after one’s physical, mental and emotional health. And working out /engaging in some form of exercise always helps—could be yoga, walking, strength training etc. I would vouch for strength training because I feel it works on all aspects of health—physical, mental and emotional and as our children grow older, physical strength is a reality we all have to face…so keeping ourselves physically fit, should be a priority and not an option.
3) Pursue a hobby or two
4) Go out alone or with friends—Catch up for a cup of coffee/tea/drink, watch a movie, or do some shopping (whatever activity takes your mind off from all your worries, even if it is just momentary). Learn to enjoy your own company. That is a life lesson that will help you in the long run.
5) Slow down and Take breaks—Nothing will come to a standstill, if you slow down or take breaks in between, to rejuvenate. In fact, everyone, including the child on the spectrum, require frequent breaks. Go for short holidays or visit places in the city or just engage in fun activities together.

As they say, the journey with Autism is not a race, it is a Marathon. So, keep yourself fit, fuel yourself with your own tribe of friends and cheerleaders, engage in self-care, keep up the spirit and enjoy the journey as best as you can!

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Dr.Triveni Goswami Vernal is a Registered Special Educator (CRR: A64010), a Psychologist and an Expressive Arts Therapy Practitioner (UNESCO-CID). She is an Avaz Certified Educator and Certified in Dyslexia Teacher Training. She is also an art educator for children with additional needs. She has a 14 year old on the Autism spectrum. She is presently working as a Consultant Special Educator at Oyster CDC, Begumpet, Hyderabad.