Here is the full transcript of Patty Manning-Courtney’s talk titled “What You Should Know About Raising An Autistic Child” at TEDxAustinCollege conference.
In this talk, Patty Manning-Courtney reflects on her experiences as a developmental pediatrician working with autistic children and their families. She emphasizes the journey from fear and uncertainty to hope and acceptance that families undergo upon receiving an autism diagnosis. Manning-Courtney highlights the resilience and adaptability of families, who learn to celebrate their children’s unique progress and achievements, regardless of societal norms.
She discusses the importance of maintaining high expectations for children with autism, noting how this fosters their growth and development. The talk also addresses the societal challenges and judgments families face, and how they develop strategies to handle them. She shares personal stories of families building supportive communities and finding joy in their children’s unique perspectives and accomplishments.
Ultimately, Manning-Courtney’s message is one of optimism and reassurance, affirming that despite challenges, families can thrive and find fulfillment in raising an autistic child.
Listen to the audio version here:
TRANSCRIPT:
Early Career Experiences
20 years ago, I was a relatively young developmental pediatrician, that’s a pediatrician that specializes in seeing children with a variety of different developmental disabilities, children with autism, Down syndrome, intellectual disability, cerebral palsy. I was asked to evaluate three-year-old twin boys. They had bright blue eyes and strawberry blonde hair, and they looked so similar that I was grateful that their mother had dressed them in T-shirts with their names on them. Their parents were young and nervous.
The boys weren’t talking like other children their age, something that was becoming even more obvious to the parents as their younger son was developing, in some ways surpassing his older twin brothers. I saw the boys and I noted that they were both pretty agile. They used very few words and they were pretty efficient at getting their needs met, getting things for themselves without requesting any help from adults. I asked the parents many questions, including, “How easy is it for you to get their attention?” To which the mother responded, “It’s not easy.”
There are ducks swimming on our pool the other day, and I was jumping up and down and pointing and directing the boys to look out the window, but they weren’t interested. I referred the boys for some additional evaluations, speech-language testing, developmental assessments, and testing specific for the possibility of the diagnosis of autism.
When our evaluations were completed, I met with the parents who were joined by the grandfather to share what we’d found. I told them, “All the information we’ve gathered and the testing we’ve done, and what you’ve told us indicates that both of your boys have autism.”
Facing the Diagnosis
Before I could proceed, the grandfather stopped me and asked, “How can you be so calm? You’ve just diagnosed both of my grandsons with autism.” His question stopped me in my tracks, but I managed to respond, “Because I know it’s going to be okay. You are all here together, supporting each other, ready to get the boys started in therapy. I know it’s going to be okay.” If I’m being honest, I didn’t really know for certain things would be okay, and I wasn’t even sure what ‘okay’ was back then. But it’s what I felt compelled to say in the moment in response to that question. And I believed it. I believed that they were going to be okay.
As a developmental pediatrician practicing for over 25 years, I’ve communicated messages like that to families thousands of times. I’ve seen a wide range of responses: tears, anger, fear, denial. Relief at confirmation that their concerns were validated after being reassured by well-intentioned friends and family members that everything’s fine. I’ve seen fathers jump to what this means 20 years from now, and mothers focus on the next day, the next hour.
Many parents have told me they don’t remember a thing I said after sharing a diagnosis. Regardless of their reaction, I’ve worked hard to make sure parents can stand back up and move forward, reminding them that their child is still perfect, but there’s some things we need to do.
Learning from Experience
Over the years, I’ve learned what I didn’t really know when I was talking to the family of those twins, which is what it means to be okay. The thousands of patients and their families that I’ve worked with over the decades in between have taught me that lesson: what it means to be okay for them, their child, and even for me. So that’s what I’m here to talk to you about today. I’m here to tell you that it’s going to be okay. The child is going to be okay. The family’s going to be okay. And yes, even I’m going to be okay. Let’s start with the child.
One of the many wonderful things about being a developmental pediatrician is getting to see children progress over time. Barring rare, unusual conditions, all children progress, but their rates of progress may vary and come in fits and spurts. Expecting children to progress, to gain new skills and to manage their behavior contributes greatly to their progress. If we don’t expect them to progress, how can they? Children control three major areas that significantly impact families: when they sleep, what they eat, and when and how they use the bathroom.
One of the things I’ve told my patients’ families is to maintain their expectations that their children will make progress in these areas. They will learn to sleep through the night, they will eat a wider range of foods, and they will learn to use the potty. At the same time, parents and caregivers were teaching me about how they came to maintain those expectations, including the mother who said, “I don’t treat him any different than any of my other kids,” or the mother whose young adult son often said, “But I have autism,” in response to things he didn’t think he could do.
To which she responded, “I don’t care.”
Overcoming Low Expectations
My patients have taught me a tremendous amount about the prejudice of low expectations, sometimes referred to as the soft bigotry of low expectations. This can apply to many groups, but it definitely applies to people with disabilities. If we don’t expect someone to accomplish something, the likelihood that they won’t is pretty high. I have many patients that communicate using a keyboard, typing things they wish to express. Some of my patients are a little particular about who they will communicate with in this way.
I asked one of my patients what helps him communicate with certain people, and he typed, “It’s the feeling that they believe in me. It’s the feeling that they believe in me.” I teach our residents and medical students to assume competence when they enter an exam room to see a patient with a disability, talk directly to the patient first, not their parent or caregiver. I have patients that have grown up and gone to college, some that drive.
Many that attend day programs, some that make their own podcasts, and some that still require a significant amount of support and supervision. I have some patients that are employed, but many more that are not, but could be. I’m certain of it, with just a little support and understanding.
In our clinic, we have two employees, Nate and Rafael, and they keep our clinic running. Rafael greets everyone that works in that clinic – the doctors, the nurses, the medical assistants, and even the rotating residents and medical students once he learns their names – with a daily affirmation. “Hi, Dr. Manning. I like your hair. I like your shirt. I like your shoes. You’re my friend.” It’s wonderful and it absolutely never gets old.
Reflections on Retirement
I recently retired and as I said goodbye to patients and families, some of whom I cared for over 20 years, I asked them, “What would you tell your 20 years ago selves?” Every one of them shared some version of “It’s going to be okay.” One mother shared, “I didn’t even know what ‘okay’ was, but it’s going to be okay. I couldn’t have predicted the joy that she brings us. Not the sappy thing. The real thing.” Immediately following that, I asked her daughter Lydia, who has autism, what I could be to her if I wasn’t going to be her doctor anymore. Sort of baiting her to say, “My friend.”
Lydia’s Humor and Insight
I said, “Lydia, what can I be if I’m not going to be your doctor anymore?” “I can be your,” Lydia responded, “real estate agent.” Her mother and I howled with laughter and joy. You know, ‘okay’ may not sound like a very high bar, but you have to understand, when families receive the news that their child has a developmental disability, they are in completely uncharted territory and they fear the worst.
But as time passes, the unknown becomes known and things become a little less scary. There will be challenging times for sure, but the children will still grow up, progress, and live their lives, which is all any parent can hope for. Those twin boys I shared about earlier? Both have gone to college and are working. But even if they hadn’t achieved that type of success, or what our society typically uses as markers of success, they’d still be okay.
Family Adaptation and Growth
Now let’s talk about the family. As exciting as it is for me to see children grow and progress, it’s been equally exciting to see families evolve over time as they raise their children. Working with them as they navigate the complex web of therapy services and school support and community resources and societal expectations, all while managing their own expectations regarding their child’s progress and development, has allowed me to witness firsthand how parents move from a place of disintegration to finding hope and joy and being okay.
Parenting is a bit of a competitive sport, isn’t it? Even more so in the disability community. While there is tremendous support across families in the disability community, there is also regular comparison of who is doing what and there is enormous societal pressure to fix your child. I’ve watched as parents pursued remedies and treatments and silver bullets. So many parents have told me that they just need to know that they tried everything. I’ve seen families forgive themselves for not fixing their child and for moving to celebrating their child for who they are. One mother asked me if it was okay that she just wanted her son to be happy.
Coping with Challenges and Judgment
I’ve seen families experience chronic grief as milestones pass that their child doesn’t achieve, or as peers move past them and still be okay. And I’ve worked with families who cried in every clinic visit. But I’ve also seen those tears shift from tears of sadness to tears of joy. Having a thick skin is a critical skill as a parent, and I’ve seen families develop skins as thick as they come. I wish this didn’t have to matter, but it does.
I can’t think of a parent who hasn’t experienced some judgement from friends, neighbours, family members regarding what their child was doing or eating or wearing. When that child has a disability, judgment is even more frequent. Our society just generally doesn’t understand when they see a child or anyone with a disability. They look, judge, comment, especially if the disability is invisible. I’ve seen families develop some amazing strategies for handling that judgment.
Building the Village
I have one patient who’s obsessed with elevators. That’s not an uncommon obsession for some children. His interest in elevators could be very obvious when he was riding an elevator with other people. He would jump with excitement and move his hands and talk loudly. He could be a little disruptive. His parents made him elevator operator business cards, which they handed out to people when riding an elevator together. It was a great way to break the ice and to explain his behavior to other people. At the same time, they were developing thick skins.
I’ve watched as families build the proverbial village we often reference when discussing raising children around their child with a disability. These are the classmates, friends, neighbors, family members who celebrate the wins and accomplishments, big and little, and the everything about a child with a disability.
This one father took such tremendous pride in his son’s interest in nursing homes. He told me in elaborate detail how his son used various boxes around the house to represent different nursing care facilities and popsicle sticks were the patients being transported between the different facilities. The father told me that when the chess box came out, you knew that someone, a popsicle stick, had passed away. You know where that young man works today? As an activities coordinator in a nursing home.
Personal Reflections from Families
Countless parents have told me that they are better people than they would have been. “It changes you fundamentally,” said one mother. More than one father has cried, recounting how he treated classmates with disabilities when he was growing up and how he wishes he could go back and change that.
Another father shared, “He’s taught me patience and he’s given me an appreciation for things I never would have had. The thrill he gave me when he learned to zip his coat.” One mother told me how much she hated it when people said “I’m sorry” in response to her telling them that her daughter has autism. She followed that with, “I’m sorry for the people who don’t know her.”
Another mother shared, “How am I going to live the next 60 years in this dark place? And then we met these amazing people and this amazing community that we never would have known. We thought we were alone until we realized we weren’t.” One father of two sons with autism put it more bluntly: “I would be a total douchebag if not for these boys.”
Physician’s Learning and Growth
That brings us to me. What did I, the physician, learn about being okay? My career as a developmental pediatrician started with founding a diagnostic, treatment, and research program for children with autism back in the 90s, when autism wasn’t as well known, partly because it wasn’t being diagnosed as often. That’s a whole different talk. The timing coincided with several controversies, including whether or not vaccines caused autism.
While I was familiar with the data that demonstrated that vaccines did not, in fact, cause autism, many of the families I worked with were convinced that their child’s autism was the result of vaccines.
There were also a number of alternative treatments being suggested for children with autism. Some things that were relatively harmless, like special diets and vitamins, and other things which were a little bit more dangerous, like chelation therapy. Again, I had data and personal experience with many patients that these interventions were not effective.
But families still were insistent on pursuing them because they had to know that they had tried everything. In both cases, I learned that it was okay to disagree with families on these topics and that we could still work together despite our disagreements. It wasn’t my job to convince them who was right and who was wrong. It was my job to be their partner on their journey with their child.
Leading Through Challenges
More recently, as chief of staff at Cincinnati Children’s Hospital, I led our operational response to COVID. I was terrified in those early days, but I used lessons from patients and families: how to listen, communicate clearly, be patient, build trust, and to expect it to be okay. And it was. I often think about this quote from Paul Kalanithi’s amazing book, “When Breath Becomes Air“: “It is not the physician’s duty to stave off death or return patients to their old selves, but to take into our arms a patient and family whose lives have disintegrated, and to work until they can stand back up and face and make sense of their own existence.”
Seeing and being part of families standing back up and making sense of their own existence and finding hope and joy after being in a dark place has been a never-ending gift in my career. Without question, I’m a different and I hope better person as a result of working with individuals with disabilities and their families. I’ve learned patience, communication, leadership skills, and to see the value in all human beings, including those who look, behave, or talk differently.
Conclusion: It’s Going to be Okay
I had no idea, years ago, when that grandfather asked me how I could be so calm, that my answer that I knew things would be okay could actually be correct. The thousands of patients and families have taught me that they are more than okay. They haven’t taught me how important it is to believe and to expect it to be okay. To have a thick skin and build a village. If families can be thrown this enormous life curveball and move from a place of disintegration to standing back up and finding hope and joy and be better for it, I’m certain that we can all handle the sure enough curveballs that life will throw at us. And we can be okay.