Developmental biologist Pam Feliciano tries to understand her autistic son.
As Scientific Director of SPARKforAutism.org, Pamela Feliciano leads the effort to build the largest autism research cohort in the United States, to speed up research and improve lives. SPARK aims to build a partnership between 50,000 individuals with autism and their families and autism researchers. Feliciano has also been a senior scientist at SFARI, the largest private funder of autism research in the United States, since 2013. At SFARI, she has been involved in efforts to develop objective and reliable outcome measures for autism clinical trials. Previously, Feliciano was a senior editor at Nature Genetics, where she was responsible for managing the peer review process of research publications in all areas of genetics. While at Nature Genetics, Feliciano was engaged with the scientific community, attending conferences and giving talks and workshops on editorial decision-making at academic institutes worldwide.
Feliciano holds a B.S. from Cornell University, an M.S. from New York University and a Ph.D. in developmental biology from Stanford University. The journal Science named her Ph.D. thesis work on the parallel evolution of wild populations of three-spine stickleback fish part of the “Breakthrough of the Year” in 2005. Later, Feliciano completed her postdoctoral work with Nicholas Tolwinski at Memorial Sloan Kettering Cancer Center in New York, studying the establishment of planar cell polarity in epithelial sheets.
This story originally aired on May 12, 2017.
Story Transcript
So when I was finishing my PhD in genetics in 2004, I had a baby. Surprisingly, he was really large. He was ten pounds and six ounces, but the story is not about how I gave birth to him. So he was perfect, he was beautiful.
When he was sixteen months old, we moved and there were cardboard boxes everywhere in the house. One day, we were unpacking and he started pointing out the letters and the numbers. Like G, M, five, seven. I was like, Wow. I had no idea my child knows the alphabet.
And then came the Orange Lego Mystery. So he had this big box of Legos. He never played with them. But I would find, from time to time, piles of orange Legos, just like of very specific size and shape, only these Legos, set aside in piles from the rest of the bucket from time to time. I was like, Wow. Between his emerging literacy and his analytical approach -- very scientific -- approach to Legos, I have a genius here.
So around that time he loved -- at bedtime, he would say, “Sing Puff. Sing Puff, Mama.” So I only knew one stanza of “Puff the Magic Dragon,” but he didn’t care. He wanted to hear it every night. And I guess after he turned two, I realized that I hadn’t heard him ask for that in a long time. Then, after a couple of weeks, I was like, Hmm.
So I called the doctor and I said, “You know, I know this is going to sound a little weird, but I feel like I haven't heard Dylan speak for a couple of weeks. He hasn’t asked for Puff and for the past months maybe he's said one word. Do you think that his vocal cords are strained or something?”
She asked me a couple of questions, and then she said, “Well, do you think he's regressing? Do you think he's losing skills?”
I was like, “Regressing? No, he's fine. He's not regressing.”
And she said, “Well, why don’t you take him, make an appointment for a hearing test, and then also take him for a speech evaluation.” So long couple of months, long story short, on a really, really hot summer day in 2007, I took him to a developmental pediatrician. We walked into the office, and he sees this alphabet rug on the floor and he makes a total beeline for it and he starts labeling the letters and the numbers. I’m like, My kid is so smart.
The doctor tries to get him to play with an Elmo doll, and she's like, “Dylan, feed Elmo. Give Elmo a drink of water.” And Dylan is not interested in Elmo. I thought, That’s fine. Like who has time for Elmo anyway? Who cares? He doesn’t need to play with Elmo. He doesn’t want to do that. He's too busy turning on and off the lights, which were more interesting to him, and opening and closing the door, which I thought was also fine.
So twenty minutes goes by and she turns to me and she says, “I’m really sorry to have to tell you this, but your son, he meets criteria for autism spectrum disorder.”
I was like, “No. No, I don’t think so.” I’m thinking like, She literally has only known him for twenty minutes. I know that she's a doctor, but I have a PhD. I’m a post-doc. This is not happening. I know my son. I would know.
So I pushed back at her, like a good scientist. I said, “What evidence do you have for this conclusion?” She looked at me gently and she started listing all the milestones he wasn’t hitting.
“Well, he doesn’t respond to his name. He doesn’t have much eye contact. He doesn’t have functional language.” So this was really huge to me. I did not know this. But she said, “He can speak. He can say words. He can repeat what you're saying, but he doesn’t use it for any functional purpose. There's no motive behind his communication.”
I was like, “Oh.”
And she said, “And there's more. He doesn’t nod his head yes or no, and he doesn’t even wave hello or goodbye.”
Still I was skeptical. I mean, I’m a scientist. And so I said, “But how are you so sure? He's only two and a half. How come you don’t know that he can develop his skills in the next year? I mean, he's only two and a half.”
And she said, “Well, that is a rare possibility, but today he has autism.”
And I said, “Okay. Even if all that is true, I signed him up for nursery school.” I still wasn’t buying it. I was like, “I signed him up for nursery school and he's starting in six weeks so that should be enough time to deal with this autism thing, right?”
She was like, “No. Dylan is not going to go to nursery school.” Then she really blew my mind. She said, “What Dylan needs is intensive intervention. He needs forty hours a week of one-on-one therapy for a couple of years.” And this was ten years ago. So she said, “And these therapists are going to be really hard to come by because there aren’t that many of them. And none of this is going to be covered by your health insurance so it’s going to be kind of challenging.”
So I said, “Okay.”
So we went home and it was really stressful for those couple of months after diagnosis. I was either in a state of like extreme despair or denial. Clearly, I was in denial. And I lost a lot of weight and I ended up getting divorced. After the divorce, there wasn’t much left between the autism and the divorce so I had a choice. I could either spend most of my income on rent and live in an apartment or I could take that couple of thousand dollars and use it to pay for therapy so that Dylan would have therapy every day after school so he would get the forty hours. Because they made such a big deal about, He needs as much as you can get and he needs that forty hours and thirty isn’t enough. And if you can get fifty, that’s even better.
So we moved into my parents’ basement, the two kids and I. That lasted for a year before it got too challenging. So then after that we moved into a really small one-bedroom third-floor attic apartment. When we moved in, I said to the landlord, “We need window guards here. I have two young kids. One of them has special needs.”
And he said, “Well, I can put window guards on, but I can only do it on all the windows and each window is going to be like two hundred, three hundred dollars.” So there's that, and I was like, Whoa. That’s not going to happen.
I figured I could come up with a cheaper solution. Duct tape, which worked really well. I took a roll of duct tape and I literally put it on the window sills on the bottom. Like this is fine. Just for a while until I could figure something else out.
When we moved into that apartment, Dylan had been getting therapy for at least three years by that point so he had actually started to make some progress. He had gained some language, but at that point his language was really just meaningful to him. So he only liked to talk about things that were really of interest to him, his restricted interest, so to speak. So this can vary depending on the person, but lots of people with autism have restricted interests. And for Dylan, his restricted interest was hand dryers in public restrooms. So he would always ask me, and he still does, “Can we go to Starbucks…” Well, he wouldn’t say that because he doesn’t have so many words. But he would basically want to go to Starbucks to see the trapezoid dryers. I had no idea what trapezoid dryers meant.
But after a while I’m observant and I realized that the trapezoid dryer means XLERATOR brand hand dryers. So you all know what those are. Those like super-powerful things that when you put your hands under you are amazed by the strength of the hand drying that occurs on your hands. So I realized that’s what he meant.
So we’d go to Starbucks and he would get his trapezoid dryer fix and I would get my latte. So this is good.
After literally a year and a half of observing the trapezoid dryer behavior, I was like, You know, maybe if I get down at his level and experience this hand dryer exactly like Dylan does, I will understand the hand dryer. And so I did.
You know, like the bathroom it can be kind of gross. People leave toilet paper. Like why do people do that? Like the toilet paper on the floor?
So I got down on my knees next to Dylan and I’m like looking up into this hand dryer exactly like he does, because he sticks his face right into the vents. And so I do that and I’m like, Holy… I can’t believe what I see. It’s the vents of the dryer are in the shape of a right trapezoid. Seriously.
You all are not amazed as much as I was, but when that happened I was like, Oh, my God. I have figured out autism. I have figured it out. Yeah, it was pretty awesome.
But I thought it was a really good example of his language at that time because he did have language, but the language that he used, it was meaningful only to him and only about stuff he cared about. It didn’t matter for a year and a half I had no f-ing idea what he meant by trapezoid dryer.
So when he’d come home I would always say to him when he got off the bus, “Dyl, how was school? Did you have a good day? Were you good? Did you behave?” He would answer me very briefly, but he would.
So one other thing about kids with autism is like they don’t use pronouns correctly. So when you call him, you're like, “You, how did you have your day?” And so he calls himself “you,” not “me,” so it gets confusing.
So I’m like, “How was your day?” And he would always say, “Yes. Yes, you did behave. You did be flexible.” And I’m like, “Great.”
Or other days he’d be like, “No, no, I did not behave.” Oh, he didn’t say “I.” Sorry. He would say, “No, you did not behave.” So this just went on every day for like months.
And so one day he runs off of the bus and he runs up to me, looks at me very happily, and he's like. “Did you behave at school today? Yes, you did.” And I was like, Wow. Because it was like he was starting to link that conversation with that context, and that was huge, just to be able to link those two things together even if it was this weird conversation with him, but not really. So I was pumped.
One other thing that I learned along the way is that a lot of kids with autism have sleep issues, literally. And Dylan is lucky. He does sleep, which is good for me. But it takes him a long time to get there. So he will toss and turn for like three or four hours before he goes to bed.
And at that time, there was one day I was just so sick of having to go back in and trying to get him to bed and I was like I am not doing that tonight. I have a lot of work for Nature Genetics I need to do and, like, reject a lot of papers. So I’m like, I have to get this work done. I’m not going in there. I’m not going in there.
So I’m, like, on my laptop, whatever, and I hear him making noise and it’s like okay. It’s nothing crazy. Then around 11:30, I’m like, “Okay, it’s time for bed.”
So I go into the bedroom that I shared with the two kids, and Dylan’s awake and he's sitting up in his bed and I’m, like, looking around. There's a nightlight in there so I can see a little bit but not everything. I’m like, Hmm, those laundry baskets that are next to the bed aren’t there. That’s kind of weird. Then like next to the dresser I’m like, Ooh, there's usually two carry-ons stuck in between the dresser and the wall and they're not there.
Then I’m, like, looking at my younger son and he's fast asleep, which is great because he can sleep through an apocalypse, which is great when you have a brother with autism. So he's asleep on his bed, but there's no pillow and there's no blanket. And like Dylan, he's sitting on a bare bed. Like nothing. Like there's no sheets, no blanket, no pillow, no mattress pad. I’m like, What is going on?
And I look over and there's a window that’s open, but not from the bottom because I had sealed it shut with duct tape. But from the top, like it was broken or whatever. So it’s half open and the windows, there's no window screen. I’m like, Oh, my God. It dawned on me what had happened.
In the middle of the night, my son with autism had decided to throw all of our belongings out the window, eleven-thirty, twelve -- midnight. And I’m like, Oh, my God.
And so I call my mom like, “Mom, I don't know what to do. Dylan threw everything out the window.” Like really, it was bad.
So I go down in the bushes like picking up Legos and toys. I find my iPad out there I’m like, Thank God. This is my work iPad. It didn’t break. Then I even found my nice digital camera in the bushes and I’m like, Okay, this is good. At least this didn’t break. I’m like crying.
And then my neighbor who lives downstairs who was also a single mom comes out and she like tells me, “Pamela, God only gives us what we’re strong enough to handle.” I’m like, Um. Oh, okay. I’m like, I don’t think that’s helpful. But I was grateful. She made an effort. Usually she would like leave me notes like, “I think you hit my car,” and I’m like, I didn’t hit your car. So this was a lot for her. I was like, “Okay.”
So I go back upstairs and I’m like, “Dyl, buddy. Why? Why did you do this?” And I look at him and he looks at me and there's just no language. There is not going to be a why. There is never going to be a why, ever. I think we all have this idea in our head that maybe there's like a moment in our lives when we had a rock bottom, and that was mine.
So with time, I gained perspective. In time, that actually happens. And I realized, once I had thought about it, that it was actually pretty funny. I mean, why would you throw everything out the window? Like there's no reason. He wasn’t mad. He's too innocent. He wouldn’t even know how to be spiteful. He just did it because he could do it, I think. Or I don't know. I still might never know.
I realized also that if I was going to survive this life with autism with Dylan that I had to stop spending all this emotional bandwidth wondering why and I had to just… Why does Dylan have autism? Why did he throw [stuff] out the window? The answer is really simple. I don't know. And it’s okay.
So despite these really dark moments with Dylan, there's so much that he's given to me as a person and as a scientist and being able to be his mom and bear witness to his very unique journey in his life. It can be three steps forward, two steps back, but still there's progress and he moves upward and forward and it is really beautiful to witness.
And Dylan, because of his autism when I had the chance to join this amazing organization called the Simons Foundation. There's a part of the Simons Foundation that focuses on autism, and I had a chance to join them. I jumped at the chance. And today I’m scientific director of this really large study, the largest research study on autism ever. We’re recruiting tens of thousands of families into this study.
Every day at work… well, not every day because we’re too busy. I can’t look at the data every day. But some days, when I get the chance to look at the data, I do feel really overwhelmed because I see these rows and rows and rows of data. And I’m overwhelmed, not just by the size of our dataset but because I know that in each row, behind it there's a person like my son and a family like mine and a mom like me.
And I know that the parents want to know why. To be able to be a part of SPARK and to be able to be a person that gets to give information back to families about why feels so amazing.
And as a scientist, yes, I want SPARK to accelerate research and get to better treatments. But as a parent, what I really want SPARK to do is to get to better diagnosis days. Because I think that when a parent like me walks into a doctor’s office and gets blindsided by this diagnosis that is almost always a lifelong disability, there should be better answers to “Why?” and “What now?” Thank you.