For the last several nights, our son has woken up around 4 a.m. He’s not upset. He’s usually laughing or singing his favorite song. (This week, it’s “Twinkle, Twinkle, Little Star.”)
Manny is 4. He has autism. For now, at least, he cannot use words to express himself. Manny sings—on his own and with “Daniel Tiger” and “Sesame Street.” He recites books he has committed to memory.
Autism is an “invisible” disability. There is no “look” to it. Our son is not in a wheelchair or hooked up to a medical support device. If anything, autism just looks like bad parenting. Manny can’t sit still or stay quiet. He doesn’t answer to his name or follow directions.
This week, the Department of Health and Human Services announced plans to address Autism Spectrum Disorder, which has become much more prevalent over the last 25 years.
“For too long, families have been left without answers or options as autism rates have soared,” Robert F. Kennedy Jr., the D.H.S. secretary, said during a Monday press conference. “Today, we are taking bold action—opening the door to the first F.D.A.-recognized treatment pathway, informing doctors and families about potential risks, and investing in groundbreaking research. We will follow the science, restore trust and deliver hope to millions of American families.”
Our family lives with autism every day. Any time autism is in the news, we have an emotional reaction to it. We’d love to know, like any parent, why Manny is waking up in the middle of the night for several nights in a row. Heck, we’d love to know what he wants for breakfast. We wish he could tell us.
But we don’t spend much time speculating about what caused autism. We know Manny has it, and we will be here for him, whatever that looks like. We did find, however, one part of the administration’s announcement particularly incongruous with our experience—when President Donald J. Trump urged pregnant mothers, “Don’t take Tylenol.” Manny was not exposed to acetaminophen during the pregnancy, and despite years of research, studies have yet to establish a link with autism.
Manny’s doctors have explained to us that there is likely a genetic explanation for autism. We accept that. We’ve shared that explanation with close friends and family when we informed them of Manny’s diagnosis. Some of our loved ones rejected what the doctors said and maintained that autism is caused by vaccines.
Wherever it came from, our beautiful son Manny has autism, and that has transformed our lives. Manny requires nearly constant supervision. He attends a special school for kids with autism and has a speech therapist. He cannot put his own shoes on, much less tie them. He cannot dress himself. He is still not toilet-trained, and we’ve been working on it since July.
Our immediate family accepts our son, but there is an experiential barrier to understanding our situation. The only people who really get it are parents with autistic children. Both of us have attended autism support groups and have even started some short-lived ones of our own. We also listen to people with autism—in podcasts, documentaries and books and in person.
At one support group, we met a mother and her 20-something son who had autism. His mother encouraged him to talk about his recent swimming competition. (He had won.) He demurred. We explained that our son also had autism and asked him if he had any advice for us about being better parents. He said, flatly but with perfect clarity: “I don’t know. I don’t know your son.”
Every child with autism is different. So is every family situation. We are not autism experts. We’ve been parents of an autistic child for less than five years. But what we want, more than treatment or speculation about causes or if-I-were-you advice, is accompaniment. We want people to walk with us and support us as we walk with and support our son.
How can each of us accompany parents with autistic children? Here are a few steps you could take to start:
Read a book about autism. The first book we recommend is Uniquely Human, by Barry M. Prizant. Dr. Prizant describes autism as a different way of being human. He encourages readers to try to understand it rather than trying to fix it. This book has helped my family be more sensitive to Manny’s needs, allowing him to explore his interests, and has encouraged us to find a sympathetic network of support.
Check out this TED Talks playlist. There are 11 wide-ranging talks on the list. They demonstrate the broad spectrum of autism, that neurodiversity is a beautiful thing and that communication can happen without using language.
Explore other media about autism. We highly recommend the film “Temple Grandin,” starring Claire Danes, books by Temple Grandin and the PBS documentary “In A Different Key.” We do not recommend forming an image based on any one person who has autism. Along with Ms. Grandin, Elon Musk, Dan Aykroyd and Anthony Hopkins have all publicly disclosed their diagnosis. But even they certainly do not represent the vastness of the spectrum.
But taking those steps alone is not enough. Accompanying families like ours also includes being more understanding of their circumstances. What we struggle with the most is feeling unwelcome in the places we consider “home.” At Mass, for example, we have gotten annoyed stares and dirty looks from the parishioners in the pews around us when our son is dysregulated or not behaving “normally.”
Manny knows and seems to love the Creed and the Prayer to St. Michael the Archangel. But when the congregation gets to the end of either, Manny screams because (we think) he’s sad it’s over. We fear that our son may not be welcomed at our local Catholic school or that we may need to advocate for him to receive the sacraments.
Our experience of parenting a child with autism has been one of isolation. We would love to be accompanied and to be asked questions like:
- What is that like for you/your son?
- Do you want/need to talk about it?
- How can I be a good friend/sibling/parent to you in this?
- How can I help?
We also appreciate hearing genuine encouragement, like “You are a great parent,” and “Your son is so good at….”
Over the last few years, we have come to appreciate the beauty of the autistic mind. But we never want to minimize that it is a struggle, especially for our son. Manny loves books, but he also eats the paper. He giggles uncontrollably when he splashes and plays in water, but he also tries to drink water in the bath, in the pool and even from puddles. Our son cannot tell us when he is hungry or thirsty or in pain, but he constantly and purely expresses his love for us.
We believe Manny is a gift from God. He gives the best hugs on earth. He notices things others do not, and he has brought us a profound appreciation of the beauty that surrounds us. He is precious, like every human being, but requires special care. We are so grateful God has entrusted us with being his parents.
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