Jenny Mai Phan is an incredible person and advocate in our community: She’s an Asian American autistic autism researcher, an Interagency Autism Coordinating Committee (IACC) member, and the mother of four children, two of whom are autistic. She also does research into adolescence and sexuality for autistics, which is topic that really needs more focus and resources. We talked with Jenny recently about her experiences, and her work.
Thinking Person’s Guide to Autism (TPGA): Thank you so much for agreeing to talk with us about your work. I admit I somehow overlooked that you were on the IACC, I guess because you hadn’t been targeted by parents who resent autistic advocates, at least to my knowledge. When I found out you were a public IACC member, I was thrilled because of the multi-faceted perspectives you bring—as an autistic person who is also a parent, and a researcher—and I thought that it would be great to interview you. Thank you so much for being here.
I don’t know how much you know about the Thinking Person’s Guide. We are a neurodiversity-oriented and evidence-based resource for parents and autistic people and professionals, and people like yourself who have multiple identities. Our goal is to get the best information out there, to help as many people as possible, especially so they don’t have to go through the long learning curves that we did.
We are all parents of autistic children, actually autistic teenagers and young adults now since it’s been 10 years. Some of us are autistic and some of us are not. That’s us. I was wondering if you could tell us a little bit about your background? Where are you from? Where did you grow up?
Jenny Mai Phan: Thank you for this interview. I have been following Thinking Person’s Guide For Autism for a while now.
TPGA: Oh, cool!
Phan: Thanks for the work that you and your team do. I learned so much from the organization, so thank you. I just want to start with that, all the work that you do for the community.
TPGA: Thank you, right back at you.
Phan: I’m happy to talk about where I’m from and a little bit about my background. I’m originally from California. Both of my parents immigrated in boats to the US. The first place they landed was in California, which was where I was born. Then, we moved to New Orleans, Louisiana, and that’s where I grew up. Lots of history there including hurricane Katrina and all the other hurricanes that we had lived through.
I am a second-generation American to Vietnamese immigrant parents. I am a mom of four children. I am autistic myself. I was diagnosed at 36 years old. I have two boys who are autistic as well, and they also have other co-occurring conditions, including ADHD. One of them has an intellectual disability and uses an alternative augmentative communication (AAC) device. My oldest son has ADHD.
I want to mention that I talked to my kids first and asked if it’s okay that I talk about them during the interview. They said yes. I don’t want to say anything that they’re not comfortable with. Anything that I’m sharing with you was consented by them, all of them.
TPGA: Thank you so much for getting your kids’ consent. That really means a lot.
Phan: It means a lot to me as well. When I was young, I wished I had the opportunity to give my own consent. I wanted to extend that same right to my kids.
We moved around a lot. [chuckles] We moved from New Orleans to Iowa. That was where I attended graduate school and then completed my PhD there. Now we are in Wisconsin where I’m doing a postdoctoral fellowship at the Waisman Center.
Next month, we’re getting ready to move again to Maryland. Both for my husband and for me for work. I will be at Children’s National Hospital working at the Center for Autism Spectrum Disorders.
TPGA: How cool that you’re going to be an autistic professional at an autism center—that is the gold standard. That’s the goal. How did you manage to make this happen, and how do you feel about coming into this role? There are so few actually out or diagnosed autistics working in these positions, so I’m thrilled to hear about it. What will you be bringing to this role? What are your hopes?
Phan: I didn’t originally plan to study autism. I actually spent 10 years of my research experience studying stress physiology and behavioral endocrinology in families for a neurotypical population. It wasn’t until after I defended my master’s thesis when I was serving on the Iowa Autism Council as a parent representative: I was listening to people’s stories and then got curious if there was a body of research on the questions that were asked. I realized there was no work regarding puberty and mental health in autistic adolescents at that time.
TPGA: My goodness.
Phan: That’s a problem. I spoke with my advisor and told her, “I think I want to switch research topics and start studying autism.” This was before my own diagnosis, but at the time, my kids were already diagnosed as autistic. She supported me and suggested that I applied for a grant to switch research topics, which I did—and was awarded.
I was shocked that I was awarded the grant because I didn’t have any history in autism research. From what I heard, switching is really hard, especially for institutions like the NIH to recognize that I would commit to that work. The NIH believed in me enough to give me funding to do the work. I ended up studying autism and puberty for my dissertation. I have spent the past two years training and working on autism research.
While I’m here at the Waisman Center doing a two-year fellowship as a postdoc, I’ve been using this time to learn from the autistic community, in terms of what are the things the community cares the most about? I want to engage in participatory autism research. For me to do that correctly, I have to listen, first. I know I identify as being a part of the autistic community—but I think we researchers come at it through a different lens. I wanted to immerse myself with other autistics who have their own perspectives about research and show that respect with my own community. I’ve been spending two years really learning and listening as someone new to autism research.
I know in academia that not publishing can hurt your CV. I hear a lot of messaging, “You need to put out some publications. That’s how you get ahead.” But I am not focused on that right now. I’m more focused on doing the research right. My transition from this fellowship at the Waisman Center to Children’s National Hospital is the start of this line of research and doing it by the autistic community’s standards.
TPGA: That’s so great.
Phan: To answer your last question, it’s been a challenge because I’m still grappling with my own identity and disclosing it with people and educating the people around me. It’s a lot of layers, with being an autistic-autism researcher, but then at the same time, sharing what the community cares about, with my professional network. I’m still learning how to do that.
TPGA: There aren’t enough role models, not yet. The autistic research community has really, from my observation, grown pretty strongly over the past few years. I’ve been going to INSAR, the International Meeting for Autism Research, since 2011. At that point, there were very, very few autistic researchers. The last in-person INSAR I went to was Montreal in 2019, where there was a very strong autistic emphasis and researcher community representation. And many of the autistic researchers came to our AutINSAR Twitter discussions about autistic research priorities. During AutINSAR it was very clear how many people were both autistic and autism researchers. That was wonderful.
I hope that as the autistic autism researcher community grows, and the respect for that community grows within the research community, that your clout increases, and that you won’t have to have this internal dance about what you do, and who you disclose to. I hope that it becomes easier for you, and I really appreciate that you’re doing this. That’s fantastic.
You said that you got consent from your kids to talk about them, which is wonderful. What are you able to tell us about your kids? You said you had four kids, do they all have autism diagnoses or are they all neurodivergent? You said one has ADHD?
Phan: I have three boys and a girl. The youngest is the girl, and their ages range from six to fourteen. Three of them are neurodivergent. As for ADHD, my two middle boys and oldest have ADHD. My second son also has an intellectual disability. My second and third sons are autistic. So far, my daughter is neurotypical, that I know of. [laughs] We have a range of neurodiversity, I think, among our kids.
TPGA: Having a wildly neurodivergent family is actually not that uncommon. I’m sure you’ve seen this, personally and also through professional observation. Even in my own family with three children. My middle child is autistic with an intellectual and communication disability, and then, with what I call my bookend kids, they both have ADHD, as in they are formally diagnosed. And because the bookend kids were raised as girls, it was—as you know better than I do—complicated in terms of recognizing neurodivergent traits in somebody who’s not your standard male-presenting child.
You mentioned that your parents are divorced, and you mentioned that you moved around a lot. When you were moving around a lot, were you able to be part of the Vietnamese community? If not, I’m wondering how that was for you?
Phan: This is something that I’ve been grappling with unfortunately, fairly recently. What I mean by that is, growing up, it was very hard for me to fit in. One, because of my neurotype, and two, because of being one of very few Asian kids in a predominantly white community. I know it sounds strange, coming from New Orleans because it is a very diverse city, but the schools I attended were predominantly white.
Not that race was the reason why I felt I needed to adapt and assimilate, but I couldn’t relate to anyone, because my family was very, very culturally Vietnamese. I hate to say this, but sometimes I tried to tone it down, because I was afraid of how I would not fit in if I presented my culture around the other kids. It wasn’t until very recently, as an adult, that I am learning about my own heritage—and I’m getting it from my mom.
I’m also reading history books and learning about how Vietnamese people came over to the US, and what that was like for them. My husband is a Vietnamese immigrant who came over when he was nine. I get a lot of stories from him when he was a refugee making his way to the US. I’m now educating my own kids about our heritage, and I’m teaching them Vietnamese, too. I speak Vietnamese fluently. My third son wants to learn all about Vietnamese heritage, so I’m teaching it to him and the language as well. He loves the language, and he loves his family’s culture.
It has not been a linear journey trying to embrace my heritage with American culture. It’s been up and down trying to figure it out because we didn’t come from privilege. We came from a very poor background. Having to navigate “how do we make it? How do we survive?” I’m finally in a place as an adult, where I feel like I can just embrace all these intersectional identities.
TPGA: That’s fantastic. And also interesting because the high school that I went to, in the mid-1980s, was extremely diverse. But nobody talked openly about whether they were going through struggles. We had many students who were either born in Vietnam or were born in the States to Vietnamese parents, and other students who were children of Japanese-Americans who had been interned. We had students who had fled from Iran because of the revolution, and people who had fled from Cambodia. All of these awful things, and nobody ever talked about it, at least not that I ever heard.
Phan: It may be the trauma too. Part of why I did not ask my parents about their experience coming over to the US was because I was scared of opening up that traumatic experience for them. Being in the US, there are a lot of experiences that are traumatic in and of itself for immigrants who left their country to escape an authoritarian government. Then asking my parents about that journey is just reopening a different set of trauma. There’s a lot of complex trauma in first- and second-generation Americans and transgenerational trauma that people don’t talk about.
TPGA: I’m so glad that it’s something that now you are able to address, and help educate your children.
I’m really fascinated by your shift to research into sexuality and puberty in autistic children. You talked a little bit about why you started studying that, but you said you came from a background of talking about stress. What is it about sexuality and puberty that specifically got you intrigued, and also what are some of the things that you’ve learned that you would want to share with people who need to know more about this topic?
Phan: When I was working on my dissertation research, I was working off of a lack of data. [chuckles] I talked to a lot of puberty researchers because my advisor is a puberty expert, and she knew many of them. I asked her, “Could you reach out to your network and see if they have data on autistic kids?” Everyone I spoke with said they did not have that data.
I branched out to autism researchers and asked them, “Do you have any puberty data?” Very few people said yes. The people who said yes said to me, “We’re not puberty researchers, so we did a questionnaire. We had parents fill them out and if the kids could self-report, they self-reported, but I’m not sure if you are going to find what you’re looking for.” They said this was not the gold standard way to collect this kind of data, and they were right. [laughs] So, I had to work with what I was given and it was very limited.
The second part to that is, a lot of these kids haven’t had sex education or health education in school. If I were to give them a questionnaire about their physical characteristics and the changes related to puberty, many of them wouldn’t exactly know how to report on that, especially for the ones who are just starting puberty.
Phan: A lot of the time, we have to rely on caregivers to report on their children’s puberty or have them go to the doctor and do a physical exam. To do this research, we would hire a nurse to do these physical examinations. In the neurotypical population, we have a lot of self-reported data on puberty. We have other instruments where the kid themselves can report on their physical characteristics.
This is a problem, and so I started to ask around with researchers who study sex education and who also are interested in autistic adolescents. They confirmed with me there’s a lot of these kids who just aren’t getting this education. They’re excluded from learning about puberty and sex education in some cases, and parents might sign a waiver to opt their child out of learning the curriculum. I thought, “Oh my gosh, how can I do puberty research if they haven’t had this education?” Then, two years ago I talked to my current advisor and said, “Can I write a grant so I can study this and maybe learn from autistic kids and their caregivers?”
I started writing grant proposals, and at first I did not get funded. (I just submitted one last week and am crossing my fingers that it gets funded.) I am going to administer a self-report of puberty just to see if autistic kids are able to do this.
This is why I’m interested: my oldest is 14, my second son is 12 and then my third son is 10. They’re all at that age. I talk to all of them about puberty, and I talk to them about everything regarding health education. But with my two younger sons, I am finding it very difficult to teach them. And if I’m struggling, I know there are a lot of people out there who are struggling to teach their kids this information. Teachers, too, are probably struggling.
TPGA: Are you familiar with the work of Dave Hingsburger at all? Unfortunately, he died recently, but he was a disability and sexuality professional. He started out working more clinically with high support people in institutions, and evolved into a disability advocate. He has a number of materials on teaching people with intellectual disabilities about sexuality, including guidebooks and videos.
Even so, I have found that having materials created for somebody with an intellectual disability doesn’t necessarily translate to having the tools you need to help that person access those materials. It sounds like you are trying to do that for your sons to the best of your ability, but I think when people need a lot of support, cognitively, and then it intersects with privacy issues, it’s a fraught area and there are many people who are struggling with what to do, and how to do it.
Like you said, there are so many people who just don’t even bother teaching autistic people, especially autistic people with intellectual disabilities, about their sexuality and how to support it. I understand that it’s complicated, but it’s also desperately necessary.
I will say, many professionals and advocates wonder if a lot of the “behaviors” that we see as autistic people enter adolescence and into adulthood is actually frustration and because they don’t have sexual outlets and they don’t even know what’s going on or what to do about it. That just strikes me as so incredibly unfair for everybody.
Phan: The stigmatization of sexual behaviors.
TPGA: Yes, and also how do you teach somebody who is intellectually disabled what, for instance, masturbation is, and how to do it without actually being involved yourself? I really don’t know of any best practices. Again, Dave Hingsburger has videos that demonstrate these concepts, but then somebody has to show you the videos, and talk about it with you, and see if you understand what’s going on, and make sure that you’re not taking things out of context.
I’m probably saying things that you already know, but also I’m processing my frustration at you, because I’m just worried for all the people in our community who aren’t getting this support. Then are frustrated and pent up and are then getting blamed for their frustration or having it just be characterized as “part of autism” rather than part of human sexuality.
Phan: I probably should also mention that I taught human sexuality in college, and one of the topics we covered was pornography and masturbation. Within that topic there are images students see in their textbooks, and they’re just a part of the lesson. It’s in the curriculum that all human sexuality instructors teach.
When we do the puberty assessments with neurotypical adolescents, one of the instruments we use is a picture drawing of genitals. It’s just a picture drawing; it’s not an actual image of any genitals or anyone’s private parts to ease anyone who might feel uncomfortable about this topic. Kids look at these drawn images, and they select where they are in their development. That’s standard in the field to study puberty. I thought that if we were to use some of the tools that educators typically use to teach health education and sex education, we can use images like that, drawn images.
You brought up how do you educate your child about masturbation? How to do it safely? What’s the appropriate way to do it without actually demonstrating it or exposing them to materials that could be misconstrued? Drawn materials, that’s one tool that can be used—but that doesn’t exist. Then when we talk about non-speaking autistics or autistics who use AAC as a form of communication, we already know the limitations of AAC currently.
Because of the limitation there, it makes it even more difficult for us to translate this curriculum using that type of communication. Until AAC is more developed, we can then use that as a tool along with a more developed curriculum to teach sex education for autistic children who are non-speaking.
TPGA: I don’t know if you’re in touch with the people from AssistiveWare, an AAC company that makes the apps Proloquo and Proloquo2Go, but it’s part of their mission is to make sure that people who use AAC have all of the tools that they need. It’s absolutely essential to their mission to make sure people have all the words, all the symbols, all the tools they need to talk about their lives.
Separately: I wanted to ask you about your role on the IACC; what spurred your application, and how are you feeling about your role so far?
Phan: I was introduced to the IACC by a friend. I had not heard of the IACC before she introduced me, I want to say four years ago. Then I started to listen in to the public meetings and was fascinated by the topics. When I saw that they were looking for new members, I applied. (This was before my own diagnosis.) In my letter, I talked about my experience as a mother and a little bit about my background too with the intersection of being an Asian mother to autistic kids and as a researcher.
I wanted to bring that perspective to the committee. Shortly after the new members of the IACC were publicized, a parent support group reached out to me and expressed how important it was to them that I was representing the Vietnamese community on the IACC. How they finally feel seen, because they felt really unseen in the autism community for a very long time. To see another Vietnamese person on the committee was so exciting to them.
That meant so much to me; I didn’t realize that I could make that kind of impact. Now, I’m starting to come out of my shell a little more, and speak more about that intersection and the research behind that. There’s little research that’s out right now studying Asian Americans in autism and mental health, especially adolescents. I want to highlight that when I can.
TPGA: You didn’t get your autism diagnosis until after you were seated on the IACC?
Phan: It was right before I was seated, by two months or so.
TPGA: So you applied to the IACC as a parent, but you didn’t say anything about suspicions or being self-diagnosed because if it’s not official, they’re not going to accept that? [laughs]
TPGA: I’m so glad to hear about the resonance of your position in the Vietnamese community. The more work we do at TPGA, the more we find out about communities that we haven’t reached. About who needs support and isn’t getting it, and who needs customized guidelines. Because the autism materials that we produce are coming from our own cultural backgrounds, they don’t always translate well to different culture,s is what we’re finding. You can do all the mechanical translation you want, but until you make the materials culturally informed as well, they’re not going to be as useful. Do you feel that that is something that you can bring to the IACC proceedings and recommendations?
Phan: 100%. At the last meeting, I raised that as an issue: Just translating materials into other languages. In this parent support group I talked about, they spoke all in Vietnamese, many of them. And I am fluent, but not fluent enough to translate research information into Vietnamese! I had a translator. [laughs] I did raise that issue, and I will continue to do so on the IACC.
TPGA: That’s just wonderful. I want to thank you so much for all the work that you’re doing. I hope you get the backup that you deserve and need and if people aren’t telling you how amazing and awesome you are, I’m going to tell you now. I hope you hear it more often from other sources but I really appreciate the work that you’re doing. Thank you for taking this time to talk with us.