We started medicines for our eight-year-old son four years after his Autism diagnosis. In the last four years, no doctor or therapist had ever advised medication for Madhav, who has Attention Deficit Hyperactivity Disorder (ADHD) within the autism spectrum.
Madhav’s hyperactivity and sitting intolerance had completely knocked us out. He would not sit at one place, would be irritable if made to do something for a long stretch of time, would not be attentive at therapy sessions, and pretty much hung out on his own doing nothing constructive.
He was a semi verbal, happy, healthy, on-the-move kid who showed decent learning potential ONLY if he sat at one place. Something he loathed to do.
We were at the end of our wits when Madhav’s school principal, also a renowned child psychiatrist in Mumbai, suggested we try medication.
Mood ‘Downers’ vs Mood ‘Calmers’
We had done the reading and nothing we read was good news when it came to medication. Anti-depressants that are ‘mood downers’ leave children listless and broody. We didn’t want that for our Madhav. We had no intention of robbing him of his curiosity, creativity, spunk and spirit to – for lack of a better word – TAME him. We were well aware that autism cannot be ‘cured.’ So how would meds help him?
Our son’s teacher had told us that the two key issues coming in the way of his learning were inattentiveness and sitting intolerance. The writing on the wall was clear. Any kind of results, whether in therapy or academics, could only be achieved if the child sat consistently for a bit.
Our boy had the potential to learn, but the sensory overload and hyperactivity made him boomerang in the class.
The doctor started Madhav on what’s called central nervous system (CNS) stimulators, a Methylphenidate composition to be precise. This wasn’t a ‘mood downer,’ but more of a ‘mood calmer.’ It would help him focus, improve his attention and decrease distraction in activities that normally do not hold the attention of children with ADHD.
‘Dawai’ Time
And then started our experiments with the ‘dawai’ as our son calls it. The small pill had to be taken whole – it couldn’t be crushed or diluted.
We tried dipping the pill in honey or peanut butter or chocolate sauce with no success, till one day I just held his mouth open and dropped it at the back of his throat. What we thought was going to be difficult wasn’t that tough after all.
Side Effects of the ‘Dawai’
- The common side effects could be irritability or loss of appetite or nausea.
- Medicines had to be stopped ASAP if they led to palpitations, aggression, rashes etc.
- Our little man only had one side effect. His energy levels remained the same for straight 15 hours. And he slept straight nine hours after. We were told we were lucky.
We started to notice changes only gradually. The school noticed the day we had forgotten to give Madhav his dawai. He was inattentive and swimming on the floor. So the medicines did calm him and increased his attention, BUT the effort to make him learn still had to be put in by the teachers, therapists and us.
It’s NOT a Cure
In a nutshell, the medicines aren’t ‘fixing’ his autism. They are trying to sort his ability to learn by helping him focus. They aren’t reducing his hyperactivity as such. He still has the same energy levels, but his brain lets him focus on the task at hand.
I remember many people around us asking if his condition can be ‘cured’ with medicines. Ah.. I wish that was true but NO, medicines don’t cure.
Medicines target the associated challenging behaviors like hyperactivity, distraction, impulsiveness, self-injurious behavior, anxiety or certain mood symptoms that come in the way of learning or therapy. We still have to go for therapies, invest more time in special education and be more present as parents in our journey of raising a child in the spectrum.
Doctor Speak
I recently chatted with an expert panel at a conference put together by Behavior Momentum India, a leading provider of intervention services for children with Autism, Asperger, ADHD etc, based on the science of Applied Behavior Analysis (ABA). Here are the key takeaways.
On being asked if all children in the spectrum should be given medicine or would benefit from medicines, the answer is a unanimous NO.
Dr Puja Kapoor, a pediatric Neurologist based in Gurugram, said medicines or pharmacotherapy has no role in treating the primary symptoms of autism like social communication, speech or stereotypes. They are only useful in treating associated features like irritability, insomnia, anxiety, and hyperactivity disorder.
Dr Gurpreet Kochar, Pediatric Neurologist at SPS Hospital, Ludhiana, adds that medicines are started when there is co-occurring epilepsy, psychiatric problems like aggression, self injury or behavioral issues, insomnia, and hyperactivity.
These medicines are not OTC drugs and it’s important to remember what may work on a case of mild or moderate autism, can fail in the case of pervasive autism. A doctor, based on certain blood tests and investigations, will decide what works for your child. Self medicating a child is big NO.
For instance the medicine that worked for my son, played havoc in another child’s case who is the same age has him, weighs as much as him, and has similar traits and challenges. The medicines made him very aggressive, irritable and the palpitations made him very anxious.
Dr Jatinder Goradaya, a Pediatric Neurologist, warns that some children may respond by paradoxical increase in symptoms for which the medicine was used. Abnormal movements of face such as grimacing, slowness of movements or tremors or shaking movements are rare but known side effects.
Medicines Are Only There to Support
Sometimes the medicines take a little while to settle and the symptoms fade away with time. Yes, we deal with our son being on the roll for 15 long hours, but when he is asked to do something, he is showing a higher level of sitting tolerance and focus.
Till date there is no ‘cure’ for those in the autism spectrum. No Omega three fatty acid supplements, or high dose of Vitamin B12, or multi-vitamin supplements or medication, can claim that they can rid an individual of the challenges that come with the spectrum. However, they have certainly helped in creating an environment within the body and mind to be responsive to therapies, and that can help those in the spectrum manage their condition and lead an independent life.
(Once a news anchor, now a full time mom. Foodie, avid reader, film buff, and erratic blogger, Mugdha Kalra writes about living with a nonconformist)
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