At one year of age, my daughter, Ava, seemed to be achieving the normal developmental milestones, including saying a few words. Then, at 15 months, she no longer uttered a word or responded to her name. In fact, she barely noticed that her father and I were in a room with her.
In the weeks that followed, Ava began to run up and down the hall over and over again. She would cry when we were in crowded or noisy places, and scream during our Mommy & Me classes. She chewed her books, ate dirt, licked the floor, and flapped her hands when she got excited.
We knew something was wrong. Our pediatrician referred us to the New Jersey State Department of Early Intervention. There they evaluated Ava and recommended that we get a medical diagnosis from a developmental pediatrician. Deep down I knew it was autism, but I wanted to be optimistic.
Learning the truth
The doctor gave Ava different types of problem-solving exercises—things like re-arranging puzzle shapes and getting a pom-pom out of a bottle. It didn’t go well at all. After less than 10 minutes she turned to me and said, “Your daughter is on the spectrum.” Part of me was happy to hear the validation, but that feeling faded immediately—I didn’t want to be right.
I asked the doctor about Ava’s autism and what it meant for her future. She said that no one can know for sure. Ava may improve, but she may not go to college, or get married, or live on her own. Hearing that reality hit us hard. Our sweet, beautiful, innocent baby had autism and I felt like I was shot in the heart. It was as if all of our hopes and dreams for her bright and successful future were shattered.
Taking the next step
I woke up the next morning with a million questions racing through my mind. Where do we start? What can we do? Why did this happen to Ava? After a few days of self-pity, we decided to focus our efforts to get Ava the help and support she needed.
We were fortunate to have been put in touch with the founding director of a very successful school for children with autism. She was also the director of an autism advocacy organization. With her help, we managed to find a lot of reliable and useful information and learned a great deal about autism. We attended seminars and spoke to other parents of autistic children.
Ava was later seen by an esteemed autism doctor who conducted a thorough evaluation. She provided a 15-page report with very clear and detailed recommendations for Ava’s education plan and an autism management strategy. Today, we work closely with Ava’s teachers, therapists, doctors, and other members of her healthcare team. With their help, we have learned to adapt our lives to having a child with autism and to provide Ava with what she needs.
Unlocking her potential
Fast-forward 7 years. Ava is nine now and attends a public school program for children with autism. She has auditory processing issues and has difficulty understanding the nuances of language. Other than using a few simple phrases such as “I want water,” “Go bathroom,” and “Crackers please,” she can’t really communicate with words. She has a hard time doing the everyday tasks we all take for granted, like going to the bathroom by herself, following simple instructions, and getting dressed. There are certainly some difficult days. We struggle to get out the door to go to an appointment and sometimes it can take hours to get her into the shower.
Some people see Ava and are afraid of her because she can’t talk, makes funny sounds, and has odd body movements. We often have to explain to strangers that she has autism. But she can sing beautifully, ride a bike, eat with utensils, read, type, and make beautiful paintings. And she does well academically.
She is very creative and musically talented as well. She can compose music and shoot and edit movies on her laptop—all of which is self-taught. She knows all the members of the band Queen. Ava can even order the toys she wants online, so we have to keep our eyes on her when she’s on the computer! She is currently interested in tropical birds, a television show called Soul Train, and Japanese anime.
Ava has a great memory. She recently memorized an entire television episode and recorded a video of her acting out all of the characters with dialogue. Witnessing her talent is always eye-opening for me. There are moments like that when I see her true capabilities and I am silenced. Ava taught us to never doubt or underestimate someone with autism.
My advice for others
If something’s not right or different with your child, see a doctor right away. Early intervention is so important. Talk to a developmental pediatrician or neurologist who specifically deals with autism and other developmental disorders. Your pediatrician should be able to point you in the right direction. And if your child has autism, work closely with the doctor and healthcare professionals to get the proper care and treatment.
Have a support system. Seek out professionals or experts, parents of children with autism, and local or regional autism groups. We found the Autism Speaks 100-day Kit to be very useful—it is a comprehensive guide to help you find these people and create a plan.
This is hard to do, but take care of yourself. Raising a child with autism is challenging. Find ways to stay mentally and physically healthy, even if it’s as small as taking 10 minutes to rest or to watch your favorite TV show. You need to take care of you in order to help your child.
And finally, always remember, there is HOPE. Children with autism have the potential to learn and grow. They need acceptance, support, and the right opportunities. While Ava will never be able to drive a car or live on her own, we believe she can still be a valuable contributor to her community and family. I don’t know exactly what the future holds, but we know that Ava’s potential is limitless when she’s given the chance to thrive.
Kim Cristo, an actress, writer, and mom to Ava, has dedicated her life to assisting Ava in her everyday activities.