When we were first diagnosed with Fragile x Syndrome, a genetic form of autism, apart from the terrible feeling that we now had a 'special needs' child with a life long disability on our hands, the first pressure on us was 'early intervention'. We were made to believe that the sooner we try to turn things around, the better. Thus we went down the spiral of therapies, teaching aids, classes and medication. By seven, Dhruv began to speak and by ten, he was toilet trained. But his behaviour became more and more violent. No amount of discipline, rewards or punishment or discipline worked. If he was well behaved in school, his behaviour at home was out of control. When we changed a school for this, the opposite happened, he was running berserk in school but was calm at home. And sending him to any school was a daily morning challenge for us.
Finally at age 14, he called it quits to schooling, then began a year of home tutors, who too were sent packing after a few months, with his his need to control them, by acting up, being uncooperative and finally with him telling us to stop them.
In the last three years we have encouraged Dhruv to express himself in colours and paints. We found him growing in self confidence, we found his melt downs almost negligible, we found we could negotiate him to do things around the house, to take care of his hygiene, and manage cycling trips to nearby stores, handle money, handle people with politeness and consideration. We found a sea change in him, once we stopped trying to change him, once we stopped demanding or imposing or charting his course. We didn't understand why this was so, though we were just relieved and glad that at least we now lived in relative harmony and peace.
Recently i came across a diagnosis called Pathological Demand Avoidance or PDA and this has helped me understand Dhruv better, perhaps finally. PDA is defined as an anxiety driven need to be in control and avoid other people's demands and expectations. The children exhibit manipulative behavior, a need to constantly control their environment and people, they avoid all external pressures on them and when any of this is apposed, have melt downs. The cure for this is to reduce anxiety by building trust, to minimise pressures, to set up a loving and encouraging atmosphere at home and school.
I had been aware of ODD - Oppositional Defiant Disorder, I knew about anxiety, but had never connected the two. Our very simple demands of going to school, simple demands around his hygiene, our need to train him in small skills were all causing severe anxiety in the poor boy. An anxiety he had no tools to deal with and this caused his innumerable outbursts. We, under the pressure of parenting dos and don't s, society and our own sense of worry, had really caused so much fear and anxiety in him, but these three years of easing that pressure, brought about everything that we had always hoped for.
Even now, being part of a large support group of special parents, i feel occasionally pressurised when i am asked 'what is Dhruv doing?' or 'where is Dhruv?' or why is he not part of the various classes that go on in the centre that we started, i always have to come up with one answer - 'Dhruv is fine he in a happy place, and we are satisfied with his progress', but the niggling worries would get spiked in me.
A formal diagnosis of PDA is something i cant expect from the draconian special educators and therapists that i have met, the disorder itself being defined only in 2008, but if i sense that this explains Dhruv to me, I don't really care for what others say.
Overall I think, I have finally made sense of Dhruv!
- By Vimal Balachander.
P.S. Vimal is a Peer on SoulUp. Her son, now 20 yrs old, was born with Fragile-x Syndrome. If you have had a similar journey and would like to have a 1-on-1 conversation with her, you can book one here.