Three Generations of Autism Advocates

Podcast Transcript

Host: 00:00
From the Mount Sinai Health System in New York City, this is Road to Resilience, a podcast about facing adversity. I'm Jon Earle.

Alison Singer: 00:11
It's very hard to understand when you are told your child is going to have all these challenges throughout his or her life. It's hard to imagine how you're going to let joy back into your life, but the good days will come. The kids improve. And so there will be more bad days, but there will be so many more good days.

Host: 00:32
One in 54 children in the United States has been identified with autism spectrum disorder. But even though the condition is common, many families still have to fight stigma and discrimination to get the services they need. Plus it can be hard to accept a reality that's different from the storybook version of family life. Today on the podcast, I talk to a mother and daughter who are deeply attuned to the highs and lows of having a family member with autism. On top of that, they've devoted themselves to better understanding and treating the condition. Alison Singer is Co-Founder and President of the Autism Science Foundation, which funds autism research. Her daughter, Lauren Singer is an undergraduate at Yale University, where she does research on autism. In our conversation, Alison told me about growing up with a brother with autism in the 1970s. Back then, the science was in its infancy and the stigma was much worse. By the time Alison's first daughter, Jodie, was born with severe autism in the 1990s, society had evolved--thanks to parent activists like Alison's mother--but there was still a long way to go. Alison and Lauren took me through their journeys as family members and advocates. I think any parent and especially those with neurodiverse kids will relate to their joys and frustrations. And I hope that no matter who you are, you'll be inspired by their ability to find wisdom and turn adversity into activism. So here is Alison and Lauren Singer.

I want to start out going back to you Alison going back to the battle days of autism research and therapy. Tell me a little bit about your brother, Steven, who has severe autism. Tell me about what it was like for you as a kid and both his experience and your mom's experience as the mother, that time of a child with autism.

Alison Singer: 02:20
Well, in the early battle days, as you described them, there was neither research nor treatment. This was back in 1968. He was diagnosed when he was four years old with autism and mental retardation. And basically my mother was told that my brother's autism was her fault. She was called a "refrigerator mother." They said she was too cold to properly bond with a child. And they said the best thing that she could do for him would be to send him away and to try harder with her other children. So of course my mom would have none of that. She looked all over for any type of research study that was taking place looking at autism. And she found one here in New York City. And as part of him participating, my mother had to agree to participate in Freudian psychoanalysis, because think about it, they were interested in studying the causes of autism. They thought the mothers caused autism. And so they wanted to study the mothers. So she was willing to accept this incredible humiliation so that she could get my brother enrolled. He stayed in that study for the full two years. And then when it was over, you know, he couldn't go to school. There was no IDEA law then, no Individuals with Disabilities Education Act then. So he had no right to go to school. He was considered uneducatable. And so I'm told by my mother that when the study ended, Bellevue pulled all kinds of strings to get him into a residential placement that was close to where we live. And unfortunately, that was Willowbrook. So, you know, today we know of the horrors that took place in Willowbrook. Willowbrook is sort of the symbol of the horrors of 1970s institutions.

Host: 04:13
And for somebody who might not be familiar with Willowbrook, what is it notorious for?

Alison Singer: 04:18
It was basically a warehouse for people with all types of psychiatric and mental disorders where there was tremendous overcrowding. There was no treatment. There was maltreatment. There was abuse. There was complete under-staffing. There was no programming. There was nothing for people to do all day except to sort of sit around. The place was filthy. It was a horror show.

Host: 04:42
Do you remember visiting your brother there?

Alison Singer: 04:44
Yeah. I used to go and visit--we used to visit every weekend. I would go on Saturdays and my parents would get to see him. And I would sit in the visitors room with the other brothers and sisters. And basically, I just remember hearing a lot of screaming and moaning and the place smelled like ammonia all the time. And yeah, we visited every Saturday. I hated it. I mean, I'll be honest, I hated going to Willowbrook. And eventually, we moved. The only way to get my brother out of Willowbrook was to move.

Host: 05:16
It seems like that could not help but be an incredibly formative experience. The sights and sounds that you just described are so horrific. How do you think that shaped you?

Alison Singer: 05:27
One way that I think it shaped me was when my daughter was diagnosed with autism originally, I was terrified because I thought that meant she was going to have a life like Willowbrook. But fortunately by the time Jodie was diagnosed in the late 1990s, things had changed dramatically. I mean, by then we had the IDEA law. So Jodie had access to 40 hours a week of early intervention and then access to preschool. There was good special education programming that she was able to take advantage of.

Host: 06:03
Jodie was born in the late 1990s. So we're fast forwarding from Steven's experience to Jodie now. What changed between the sixties and seventies and the late nineties, when Jodie was born?

Alison Singer: 06:14
Well, first of all, I think a lot of attitudes changed. And a lot of laws changed.

Host: 06:20
What brought that about?

Alison Singer: 06:20
Parent activism. I think parents fought for the IDEA law and parents fought to keep their kids at home and not send them off to institutions, to make sure that they had access to public education, free and appropriate public education. And I'm very grateful to those parents who came before me who really set activism in motion. And then I think my generation of parents whose children were diagnosed in the nineties, we continued that work. We lobbied Congress for the Combating Autism Act, which more than doubled federal funding for autism research. We continue to lobby for the reauthorization of the Individuals with Disabilities Education Act to make sure our children have access to a free and appropriate education in the least restrictive environment.

Host: 07:13
What were the steps in your journey from having Jodie, that diagnosis, and I know from hearing some of your past interviews, that there were moments of despair, that I think many parents of children with autism can relate to. So let's start at the beginning of that journey.

Alison Singer: 07:28
So Jodie struggled from the time she was born. I mean, she cried a lot. She wasn't really able to eat, she had problems sleeping. She showed early signs of autism that I know about now that I didn't know about then, probably as early as a year of age. And certainly by 18 months she could have been diagnosed. She wasn't diagnosed until two years, 10 months though, because I was really afraid to take her for diagnosis because I thought diagnosis might mean she had a life like Willowbrook. And I was so afraid of that, that I really tried to say, "She'll be fine. She'll be fine. Everything will be fine." But everything wasn't fine. And then when she was eventually diagnosed, I sort of accepted this. And I was a type A person, I read everything there was to read. I said, "We are going to give her the Cadillac of interventions. She's going to have great access to therapy. We're going to give her everything she needs." And at the time these books written about autism said, if you get your child into a good early-intervention program for two years, they will make enough gains to be able to be in mainstream kindergarten. And that was the goal at the time. And I said, "Well, if anyone can do it, then she can do it because we're going to do everything." Unfortunately, it doesn't work that way. And after two years, when we took Jodie for retesting, she unfortunately did not make very many gains at all. She continued to fall behind her same age peers. And so to me, that was the day of greatest despair.

Host: 09:03
Tell me about that day.

Alison Singer: 09:04
It was the day where basically they told me, despite all of your best efforts as a mom, as a type A personality, as the doer, you couldn't help your daughter. So it wasn't the day she was diagnosed, it was the day where they told me, basically, "This is going to be lifelong. She's going to have challenges her whole life, get yourself ready."

Host: 09:32
What did you do with that?

Alison Singer: 09:32
So my husband and I were there together when we got that news, it was very depressing. We went out to dinner, we had many drinks. But then we made a plan. We basically said, "Okay, we're in this for the long haul. We love her. We're going to continue to give her everything she needs. We're going to do what the experts tell us to do. We're going to read all the science. We're going to get her into the right groups. We'll find good schools." And that became my full time job. I left work and I anointed myself, CEO of Jodie incorporated. And it really was a full time job. I had to hire therapists, and I had to fight with the insurance company. And at the same time, I had to take care of this other beautiful baby who had just been born. And I also had to take care of myself because I went into a pretty deep depression after we got that news.

Host: 10:27
Can you say more about that?

Alison Singer: 10:29
Yeah. I mean, I think it's not uncommon when your child is diagnosed with autism and it's severe autism and they are having terrible tantrums, and they're not sleeping, and they're aggressive towards your other baby, and towards you and your husband, and they are hurting themselves. I think that might lead a normal person to become depressed. It's hard to see when they're in that really extremely challenging state, that things are going to get better. It feels like it's always going to be this way. And so, I was very depressed. So I went to therapy and I was in therapy, I think for two years. I highly recommend therapy. I think it's really important for people if you're going through something like this, to have an outlet to talk about what you're feeling and to know that what you're feeling, you're not the only person having those feelings. And that it's very natural to be afraid of the idea that your child is going to have all of these challenges for her whole life.

Host: 11:35
What were some of the coping, like specific coping strategies or kind of like ideas that helped you during that period of time? Can you recall anything specific?

Alison Singer: 11:45
So, I mean, I recall very deeply feeling that I was never going to be happy again. And any moments in my life when I did feel joy, I felt guilty immediately after like, how could I possibly be happy when my daughter has autism? But I think one thing I worked on in therapy was understanding that things change, and you get used to things, and that you have to embrace things that are good in your life. Like Jodie was pretty healthy, other than the autism, she was, she was healthy. And that she could experience joy. And when I think back now to a time when I thought I would never experience joy in my life, I almost can't even conceive of that. But I do remember thinking that, and the therapist saying, "When do you feel you'll be better?" And I was like, "I'm never going to be better. I'm never going to be happy again." But you are. And I think what helped--there were several things that helped. One was my therapist suggested I take up boxing and that helped tremendously. I highly recommend boxing because when you're going down this path, there were a lot of people that you will get mad at all of these people, admissions officers, and insurance companies, and people who prevent your child from having access to things that she needs. You can sort of picture their face on the boxing bag and smack them. And that helped, that definitely helped. And also joining support groups with other moms, focusing on my other daughter, and also just becoming a volunteer advocate.

Host: 13:17
Lauren, what does it bring up for you hearing about your mom's experience in her early years?

Lauren Singer: 13:21
So I really agree with what my mom said about the importance of finding outlets and people to talk to you about your feelings. Because when I was around four or five, Jodie was going to an enrichment program at our local Jewish Community Center. And I was just the little sister who always wanted to do whatever she did at the time. So I went to the Jewish Community Center with her and they actually had me join a group of other siblings who had sisters and brothers with autism or other developmental disabilities. And we talked about a lot of things in that group. One feeling that I was dealing with that a lot of other kids in my position were, were feeling responsible for our siblings, and feeling like we almost needed to play a similar role that our parents were playing. And I'm really grateful for a place to explore those feelings at the time.

Alison Singer: 14:13
I remember that program really empowering you. You would come home and you would say, "This is not fair. We have to do this." And you really learned in that program to stand up for yourself and that it wasn't all about Jo, that you had to be an advocate for you. And I really was grateful to them for that because they helped make you an outstanding advocate.

Lauren Singer: 14:38
Thank you. Yeah. I think that was really helpful. They emphasized talking about our feelings and also, I mean, dealing with how we were conceiving of autism and of what our siblings were going through from such a young age. I remember thinking a lot, not only about what I was feeling, but also just about what autism was, and what Jodie was feeling, and what she needed. And I went through all sorts of ideas about autism. I think at one point I felt pretty angry and like, she would be happier without all of the things she was struggling with, like having panic attacks. And I mean, I wish that she could feel joyful all the time. And then I realized that, I mean, the autism was part of her. I learned to accept that from a pretty young age and just celebrate the person who she was.

Host: 15:30
What helps you to accept that?

Lauren Singer: 15:32
I think that at some point I stopped seeing autism and Jodie as two separate entities. And just thinking about all of the things she brings as a person. Again, I loved spending time with her. She has so much love for me and for everyone else in our family.

Host: 15:49
Describe your sister for someone who doesn't know her.

Lauren Singer: 15:51
I think she truly just has so much joy and so much love for everyone. I think one reason that she loves taking care of animals--and I mean, even with strangers, she's always going up to people and I don't know, interested in who they are, even if she can't remember their names later. When she meets someone again, after not remembering them, she is excited all over again. Again, she does things in her own way. She reads the same books again and again, and she reads books that maybe other people her age don't, and she's like the same things for her whole life. But she enjoys all of the things that she does every day. And she now works on a farm at The Center for Discovery in upstate New York.

Host: 16:35
I'm struck by the word joy that keeps on coming up. And I'm drawing the thread back to what you said, Alison. You said you weren't sure that you were going to be able to feel joy again, and you said that you would feel guilty in moments that you felt happy. I don't know, just noticed that.

Alison Singer: 16:51
Jodie does experience joy. I think the word I would use to describe Jodie is pure. She does not have a mean or manipulative bone in her body. Everything she does is very, very organic. It's exact. She expresses exactly how she feels, whether that's complete joy or utter despair. She's very open with her emotions, I think, because she can't really control or express them, but you know that everything is honest and coming just from a place of purity. Even as much as I love Lauren, I sometimes think, you know, her motives are not always pure. She sometimes tries to get her own way, but Jodie is just, her soul is so clean.

Lauren Singer: 17:44
When I mentioned before that I started not seeing autism and Jodie as separate. I mean, when I was really young, I think around four or five, when I first joined the group, I think I remember saying that I wished I could scoop up Jodie's autism and throw it into a volcano. But yeah, now the way I think about it is that she has challenges and she has things that make her happy, just like anyone else. And I want to help her as best I can get through the challenging parts and celebrate the things that she loves. And that's what I hope I can do whenever I interact with really anyone who has challenges. But I mean, looking forward, as a doctor, I think that developing a relationship with patients will be about helping people get through the challenges, but also seeing them as a whole person and helping them feel like their best selves.

Host: 18:33
What have you learned from Jodie?

Alison Singer: 18:35
I have definitely become a more patient person since Jodie. Before I had children, I majored in economics. I was trained as a journalist. I went to business school. It was about getting things done and being efficient and accomplishing and achieving. And Jodie was just about being. And being in the moment, and interacting with whatever toys she was playing with. She made me slow down and be in her world. I tried for a very long time to bring her into my world and bring her into what I thought was just the regular world. And that didn't really work. I mean, when you're with Jodie, you have to suspend your life and be in her world. And that was new for me. The other thing I learned was that there is a community of parents, of kids with autism and disabilities that is the nicest, most dedicated, most loving group of people that you will ever possibly meet. I have a lot of great friends from college. I have a lot of great friends from business school. I have a lot of great friends from when I worked at NBC. But the friends that I've made in the autism world, I think because we share this unique experience, we can understand each other and relate to each other in such a deeper way than I was ever able to experience with any other friends. So those are really two things that I'm grateful to Jodie for.

Lauren Singer: 20:12
So I think that one thing I've learned from growing up with Jodie and meeting lots of different people with autism and other developmental disabilities, mental illnesses, is really seeing people in tough moments as working on things, or feeling a difficult feeling, rather than having bad motives. I don't know. I find that I feel very little anger towards other people or blame compared to what I could be feeling. Because now I really think of things as if someone lashes out at you or is angry at you on the subway or on the road or something like that, I feel, I think a lot less anger and resentment than I might, and instead I think about how that person is feeling and what they're working on at the moment. And it's better for other people to help them with that then to blame them.

Host: 21:08
I love that. I want to pivot back to activism. Alison, you started to tell the story of Autism Speaks, which is one of the largest autism advocacy organizations in the country. What got you to that point to joining this organization, going from the CEO of Jodie inc., to now going and taking on a leadership position at what was then a brand new advocacy organization?

Alison Singer: 21:35
I was working at NBC at the time. And Bob Wright was the president of NBC when his grandson Christian was diagnosed with autism. He and his wife, Suzanne, decided they were going to found a national organization to raise money for research for autism. And Bob knew I had been volunteering at the National Alliance for Autism Research and knew about my experience with Jodie. And so he invited me to come be the CEO and it was a really exciting time. We got a lot accomplished. But after four years there, I felt that what I wanted to do was really just focusing on scientific research. I felt that the legislative advocacy was great and the awareness was important, but what was really going to help our children long-term was to understand the biological causes of autism and develop treatments that were targeted at the underlying biological mechanisms that caused autism. So I founded the Autism Science Foundation. And our mission is much more narrow than Autism Speaks. We fund research-- University-based research--to understand the genetic causes of autism, the environmental causes of autism, how genes and environment interact to cause autism. And then we fund clinical trials of treatments that are really targeted to that underlying biology.

Host: 23:00
What is the lay of the land right now in terms of--what do we know now? And I preface this by saying of course autism is extremely complicated. So to ask you to give like a short summary of, "What do we know about autism? How to treat it?" is a little bit of an unreasonable question, but I'm going to ask you the question anyways.

Alison Singer: 23:18
I'm happy to answer it. We have learned so much about autism in the last 10 years, especially in the last five years. We are now able to find the genetic cause of autism in about 30 to 40 percent of the kids. We have found about a hundred genes that are associated with autism. It's not a single gene disorder. We know that it's a good number of genes and it's how these genes are interacting with one another. These genes tend to cluster around the same types of functions, and we are now able to change the way we do research based on knowing the underlying genetics of the kids involved. So, whereas before, when we would do clinical studies, we would just throw all the kids with autism in together. So you could be a person with autism who had language or who didn't have language, or who had a huge IQ, genius IQ, or cognitive disability, and you would be in the same study. Now we know to sort first--we call it gene first approach--to sort first by the underlying genetic deletion or duplication. And we are testing interventions that try to reregulate the proteins that are dysregulated due to that deletion or duplication. It's a scientific approach. It's a more personalized approach to medicine. It's not this one size fits all, take a little Prozac because it might make you feel better. It's we who are going to really get at fixing the dysregulated proteins that are causing your symptoms.

Lauren Singer: 24:53
I would--oh, wait, where are you going to say something?

Alison Singer: 24:55
No, you talk.

Lauren Singer: 24:56
I would love to just interject for a second. One thing that I've always noticed, and am noticing now, as I'm hearing my mom talk about science, and talk about things like genes clustering and interacting with each other, is that, I mean, my mom was an economics major who went to business school and then was a journalist. And I don't know if she could ever have imagined herself talking like this when she first set out to start her career. But I think it's incredible how the conditions that we find ourselves in in life and the things that we didn't expect can really stretch us and help us find skills we didn't even know we had. I mean, now people assume that my mom is a doctor, they say, "Dr. Singer." And they assume that she might have a PhD in biology or something. But yeah, it's really incredible to see.

Alison Singer: 25:47
Thank you. I'm speechless, which is rare.

Host: 25:50
I'm speechless too. I don't know quite what to say after that. I think that just speaks to your determination.

Alison Singer: 25:57
But I don't think I'm the only parent for whom this happens. I think all of us, as parents of kids with autism go into this very deep learning mode--we read everything, we read the studies, we go to all of the meetings, we talk to the doctors, we're at all of the scientific conferences--because it's parents who really have to lead the charge. It falls upon the parents. I think it's also going to fall upon the siblings as our children grow up, the siblings are going to have to take a larger role. I'm so proud that Lauren has already embraced this community and loves her sister so much, and not only loves her sister, but wants to be an advocate for all people with developmental disabilities.

Host: 26:45
Where do you see the science of autism in 10 to 15 years?

Alison Singer: 26:51
So we are learning more and more every day about the genes that cause autism. And as we continue to invest in genetics research, we will find the genes that cause autism in more and more people. And we will be able to conduct studies based on more groups with the same type of genetic deletion or disorders. So I think we will move towards a more personalized approach. It won't just be, if you're diagnosed with autism, you get applied behavior analysis. There will be very targeted medications based on your underlying biology. And there will be many different types of behavioral interventions that are based upon your strengths and your weaknesses and the areas where you need to improve, rather than just saying everyone with autism gets ABA. So we used to be in sort of a one size fits all, and we're moving towards a much more personalized approach--an individualized approach for everyone.

Host: 27:56
And what do you think that could mean for Jodie and Steven?

Alison Singer: 28:00
Well, you know, for Steven, he grew up in a time when there was no intervention. I always wonder where he would be if he had had access to any type of treatment. He had no treatment. He has no words. He has no language, but we continue to try new types of interventions with him because I think the learning window never closes. And so we continue to try to teach him to talk. With Jodie, I feel the same way. She is in a program now, she lives at The Center for Discovery. She's involved in the farming program. She raises pigs. Every Jewish mother's dream. But she loves it. She's so happy. And when she comes home for a visit, after a few days, she'll use her limited words to say, "See the pigs." And I know that means she's ready to go back and take care of her pigs. But she is continuing to learn new skills. She's actively engaged in the community. She lives in an amazing place. I only wish that more people could live in a place like The Center for Discovery because it's just wonderful. I would like to live at The Center for Discovery. It's lovely. But he knows she is going to be a lifelong learner. And I'm grateful for that.

Host: 29:14
If you could speak directly to somebody who--I'm thinking specifically of the parents or family member of someone who's newly diagnosed with autism, who's just at the beginning of the journey that we've spent this conversation talking about. What would you say to that person?

Lauren Singer: 29:30
I think that for any person with autism and for family members of that person, there really is no one narrative. There's the saying, "When you've met one with autism, you've met one person with autism." And the whole experience of having a sibling diagnosed with a medical condition that they'll have forever isn't talked about that much. And I'm glad that it is being talked about more in media that's accessible to everyone.

Alison Singer: 29:56
I think I would tell families that they are going to have good days and they're going to have bad days. And when your child is first diagnosed, you think you're just going to have bad days. It's very hard to understand when you are told your child is going to have all these challenges throughout his or her life, it's hard to imagine how you're going to let joy back into your life, but the good days will come. The kids improve. They go to therapy, they go to school, they make gains. They all improve. And so there will be more bad days, but there will be so many more good days.

Host: 30:35
Thank you both so much for being on the podcast. This was really great.

Lauren Singer: 30:38
Thank you so much.

Host: 30:40
Alison Singer is Co-Founder and President of the Autism Science Foundation. Lauren is an undergrad at Yale University and an incoming student at the Icahn School of Medicine at Mount Sinai. Next month on September 17th, the Seaver Autism Center at Mount Sinai will host its 24th Annual Advances in Autism Conference. The conference will feature leading experts talking about the latest in diagnostics and treatment. To reserve a ticket or learn about how you can contribute, check out the link in the show notes. If you enjoyed this episode, please rate and review us on Apple Podcasts. It helps other people find the show. And tell a friend about us. Thanks. Road to Resilience is a production of the Mount Sinai Health System in New York. It's produced by Katie Ullman, Nicci Hudson, and me, Jon Earle. Our executive producer is Lucia Lee. From all of us here, thanks for listening. We'll see you in a couple of weeks.