My Story: No Shortcuts for Autism

Sometimes, we learn the hard way that there are no shortcuts for autism. This is an account of just one of the harrowing tales. A reader of our previous blog, “Do Vaccines Cause Autism?”, shared her story. Names (when and where they appear) have been altered to protect identity.

No Shortcuts for Autism

My son was diagnosed with autism aged 3 years and 4 months. I couldn’t believe this was happening. My son, Ayaan came into this world after years of prayers and fertility treatments. At the time of his birth, my husband and I had been married for nearly 7 years. When we discovered Ayaan’s diagnosis, I had not even heard about autism.

Our story began here. As a mother, I felt like I had failed my son. We tried everything: hakim, homeopathy, alternative medicine, totkas, and dum. Some elders in our family told us that his name was holding him back, that it was too “heavy”. We even changed our son’s name. But we never made any progress. I begged my son’s pediatrician to provide a solution, something effective. She looked at me with sympathy and even pity as she explained that there was no medicine and that my precious son would need years of therapy to help him. I was unwilling to believe that.

I believed that I would find a miracle cure. In months following Ayaan’s diagnosis, I joined many Facebook groups. Many mothers like me were looking for and sharing tips and medicines that helped their children. From camel milk to soup of chicken claws, I tried all of them. These mothers also highlighted the perils of the polio vaccine. I stopped that as well fearing my son would never recover. Each time, I waited for a sign that it worked. I would tell everyone I noticed Ayaan finally responding to his name. That was only wishful thinking on my part. The shortlived movement of his body was just something else, never a response. I was fooling myself, deliberately. Something had to work.

Eventually, I began losing my sanity. I knew I had to stop. This time, I decided to try therapy. I enrolled Ayaan in a therapy centre. He went there for a few months, and there were so many changes. A mother’s dream was coming true. But then, the old madness took over. I wanted to cover the entire journey in one leap. A doctor in our city was becoming very popular, so I visited the clinic. The doctor told me about tests that could be done. They were expensive, but money was no object. I must have spent over two hundred thousand rupees on the doctor’s fees and the numerous tests. It felt like I was doing something useful.

When the test results came out, I was shocked. They were unusable. They told me nothing new and they were not going to aid Ayaan’s progress in any way. I brought it up with the doctor and I was told that I had authorised the tests and that she had explained the whole thing to me beforehand – the tests results may or may not yield any outcome. The doctor was right. She had told me all those things. But they were neatly packaged in false hopes. I realised what a fool I had been and it was no one else’s fault.

My world was plunged into darkness once again. While I was giving Ayaan everything I had, I was losing my own battle. I had a breakdown. Doctors called it depression. I had failed as Ayaan’s mother and even as a woman – my only child was flawed. Ayaan received therapy on and off during this time, with poor results. I stopped sending Ayaan to therapy altogether. I wished to have another child so badly, one who was whole and complete. But that wasn’t meant to be.

Then, someone told me about a homoeopathic doctor in another city. I knocked on this door, too. This doctor gave me medicine and warned me about side effects. As with everything else, I was willing to take the risk. Ayaan became aggressive and hyperactive with the use of this medicine. But I was hoping that Ayaan would get better once the process was complete. That remained my dream. Nothing happened.

By this time, Ayaan was about 7 years old and very hyperactive. His tantrums and meltdowns were also out of control. The one thing that had worked was therapy. I had tried almost everything random women on the internet had said. They had all shunned therapy as it took long and they had to work hard. The only conclusion I could draw was that all those mothers on Facebook were frauds. They must have been getting their children “fixed” through therapy but telling others not to. I felt angry at them and even myself. I had been such a fool! I cursed all those women who had misguided me. I can’t even repeat all the bad things I said about them.

I took Ayaan to the therapy centre again. At this point, he had lost almost two years (we stopped therapy when he was around five years old). They refused to register Ayaan again. And they were right, too. Ayaan was nearly 7, extremely hyperactive and aggressive, too. I couldn’t blame them. But I was determined, I took Ayaan to many therapy centres and most of them refused. Finally, I found a place that was willing to accept him. They told me outright that there was no guarantee it would work, but they did say it would take intensive efforts to help Ayaan. They were charging a whopping fee – they told me clearly they would charge me extra because Ayaan needed more help than any other child.

It was all on me, I had wasted money and the even more precious commodity – time. Where I had spent hundreds and thousands of rupees with ineffective medicines and practices, I would also willingly do this. This time, I closed my ears to everything else and focussed on myself and Ayaan. I waited patiently. It was over a year before Ayaan returned to the state he was in before my misadventures began.

Today, Ayaan is over 9 years old. He is doing quite well. As his mother, I’m also in a better mental space. I understand autism is lifelong, but Ayaan can thrive if I give him the help he needs. I know that he can never be like other children. But whatever he is today, however he is, that is enough for me. Today, I can see how naive and foolish I had been. If only I could turn back time and make the right choices. But that is not possible. I’m sharing my story not to gain anyone’s sympathy but to prevent other mothers like myself from making the same mistakes.