Autism. It’s an ugly word, isn’t it? Certainly one that I never figured would have such a stranglehold on our lives when my precious son was born six years ago. Autism, best described as a complex developmental disability, affects one in 166 children, and my son is one of them.
By now, three years after my son's diagnosis, I know no other life than being his Mamma. For the first three years of his life, before the diagnosis, I had tread mostly alone in dark and deep waters, suspecting he had this terrible thing while the rest of our family clung to clichés like, “Boys talk late,” and “He’s not talking because you anticipate his needs.”
Each family of an autistic child has a wrenching diagnosis story to tell, the horrible time when they learned that their child was autistic and might never speak, might never make friends, might never learn to be independent, might never learn, period. The spectrum of autism (it goes from mild to severe) is so wide. I think most parents initially teeter between disbelief and despair, clinging to the notion that, OK, we’ll work very hard for a few years and my kid will beat this.
Sometimes it works that way, often it doesn’t. Some kids do learn to manage their autism and are able to go to regular school, make friends, progress academically, and become independent. But many kids do not. And only time will tell how much my son will progress.
Autism is my son’s battle, but we all are fighting it with him--from grandparents who support us with unwavering prayer and faith (and sometimes financial support) to siblings who have sympathetic ears, to our daughter, who at the age of three knows enough about Applied Behavior Analysis (ABA is therapy of choice for many autistic children) to reinforce her brother with a “Good job!” and a high-five when he accomplishes some minor task.
As traumatic, agonizing, tiring, and joyful (yes, there have been joyous moments) as our autism journey with our son has been, there's one thing I can thank autism for--fighting it has invigorated my faith and has made me a better Muslim.
Three years ago, I was eight months pregnant with my daughter. My son, then nearing his third birthday, had been in New York City’s early intervention program for about a year receiving speech therapy and special instructions therapy. The progress was next to nil, and he was withdrawing more and more in front of my eyes. In the deepest part of me that I tried to deny, I knew it was autism.
After our daughter was born, we consulted one of the top behavioral development pediatricians in New York concerning our son, and my fears were confirmed. My mother-in-law, who was visiting from India to help us out with our new baby, was--with all of us--devastated and had difficulty grappling with this new life of ours.
She, and the other grandparents, immediately fell back on faith and prayer. “Inshallah (God willing) Allah will cure him,” she and my mom would say to me. “Allah can make miracles. He can cure your son in minutes. He has a plan for you and your son. He will not forsake you.”
My mother would tell me stories of our Prophet Muhammad (peace be upon him), whose four infant sons died, to remind me that even Allah’s most beloved suffered. She tried to impress upon me that, yes, our situation was bad, but it could be so much worse. She tried so hard to help us out of love for us and her grandson.
But at that time, all of the "comforting" words of faith felt like daggers in my heart. Both my husband’s family and mine are devout Muslims, true to their faith. They raised us to be Muslims first and everything else second. But this autism diagnosis, this cruel, cruel trick played on my son, shattered my faith.
Sometimes I had the simple thought, “Why me?” But more often it was: “Allah, you gave our family this difficulty. And more so, you’ve made life difficult for our innocent son. You can’t do anything for me now." I decided to throw myself and my son into therapy and try to handle autism myself, without Allah's help. I kept up a “faithful face” for my family--praying and reading the Qur’an, writing prayers with saffron ink on waxed paper and then soaking them in water for my son to drink. But I didn’t believe any of it would help him.
The next month, when my son started going to one of Manhattan’s best schools for autistic children, was the worst of our life. It was November, 2003—the month of Ramadan by the Islamic calendar. Every day my son cried, paced our apartment, wrung his hands, repeated one phrase endlessly, and began panicking as soon the evening adhan (Islam’s call to prayer) sounded from our computer. (He knew that the sound of the adhan meant the day was coming to a close, and he would have to go to school the next day.).
But over the next two years, I began to feel that I had to reconnect with Islam and Allah. If I cut faith out of my life completely, then I knew eventually autism would beat my family and me. Living a life full of therapy and without a larger sense of purpose was draining me. And I needed to be a whole person, connected with my faith, so that I could be the mother my children needed me to be.
I thought a lot, I cried a lot, and fought with Allah a lot. Then I decided to go for Hajj, the once-in-a-lifetime pilgrimage to Mecca and Medina required of all Muslims. I went in January, 2005 with my husband. I went to fulfill my obligation to Allah, and to find my faith.
I came away from that experience with the feeling that when you finally accept your fate, you can embrace your life. And then you can actually celebrate and thank God for giving that fate to you. And that’s the golden ticket, I believe, to being happy and strong. An autistic child is not a loss, I realized, but a sort of gift that can be managed through faith.
Our lives are so much better now. Islam is actually more a part of me than it was before my son was born. We all realize now how truly lucky and blessed we are to have our son. And we feel equally blessed to have our daughter, who is not autistic.
It’s not easy, of course. I still fight with Allah all the time. On occasion, my faith does weaken: When my son is going though a difficult period, I still blame Allah. I beseech Him. I get angry with Him, and then I turn to Him again. Finally, finally, I understand what my parents and in-laws were saying all along--that Allah, indeed, has some purpose for our son. That realization doesn’t cure autism, but it sure helps me help my son to fight it.
This fall, my son started attending a “normal” preschool class for a few hours twice a week with an aide. (The rest of the day he spends at his special school for autistic children getting intense ABA therapy.) On his first day at the preschool, I marveled at the ease with which he entered the classroom and joined the kids for circle time. And then I sat in my car and cried and prayed.
I read the little book of Qur’anic prayers that I keep in my purse for an hour, trying to keep calm before I went in to pick him up. When I did, his aide said she was amazed by the ease of his transition to the new classroom. I just smiled.
He’s a hard worker, my son. He’s got good days and bad days. His progress is all a series of baby steps. I don’t know what life holds for him, but I don’t (always) fear the future.We try to take it a day at a time. And there’s one thing I know, one hard and fast fact about him that gives me immense peace. He is a true innocent. He is incapable of sin.
I believe my son has the best chance of all of us to get into jannat (heaven). And I hope I'll always have the strength and ease of mind to help him fight this disorder. It's his fight, but he's my son. And I would do anything to lessen the affects of his autism on him--anything. I take strength from a verse in the Qu’ran: “Say: ‘If I am astray, I only stray to the loss of my own soul: but if I receive guidance, it is because of the inspiration of my Lord to me. (Saba’ 34:50)”
Allah inspires me, and He has graciously given me this great kid for inspiration as well.