Interview with Nicole Zizzi: Dance and Autism Awareness!
We are thrilled to share our interview with Nicole Zizzi!
Nicole is a lifelong dancer, founder of Evolve Dynamicz, a master's student in architecture at Northeastern University, a mental health advocate, and an autism awareness activist!
She sat down with our content director Hannah Hicks to speak about her experience as a dancer, her journey to receiving her autism diagnosis, systemic inequities within healthcare, the role of autism in her dance experience, and how to make sports a safe space for all neurodivergent athletes!
We hope you all enjoy this interview as much as we did!
Hannah: To start, you could tell us a little more about yourself?
Nicole Zizzi: Sure, um so as I was saying earlier, I am a graduate student at Northeastern University getting my master's in architecture. I’m actually graduating this May. I get to graduate at Fenway, which is pretty cool.
I’m also a professional dancer and choreographer. I am the co-founder and director of a local concert dance company called Evolve Dynamicz. We were founded in 2015, and we put on our own productions about every year, but covid has changed things. We do performances throughout the area, and sometimes we get commissioned to do work for museums, and yea it’s really fun doing that.
And let’s see, I studied physics in college and then decided I didn’t want to do it after I graduated, and that’s how I got into architecture. But yea, I recently had a hip reconstruction surgery that I’m currently recovering from- you can see my crutches in the background- and I’ve been working a lot on my rehab, and I actually have a mental skills coach out of the Micheli center at Boston Children’s, and we work on the mental health side of recovering from an injury... I highly recommend [it] to anyone in the Boston area who is going through any sort of injury or recovery or just needs help with their, with their mental game in whatever sport they have. I think that’s everything, I’m sure I missed something, but we’ll see later if I’ve missed something!
Hannah: Yea, that sounds so helpful, and all of that sounds really cool too. How and when were you diagnosed with autism, and how did it make you feel?
Nicole Zizzi: So I actually wasn’t diagnosed until about a year ago, which is crazy, but actually women are 4x less likely to get a diagnosis than men are, or male, or boy children because the research that has been done has been focused on children who are boys and not girls. A lot of health professionals don’t even know how to look for autism in females, which is essentially why it took me so long to get diagnosed.
I’ve also always known that something was different about me, but I never really knew what it was. Once I graduated college and I met my current boyfriend- he studied psychology in college, and he was kind of the one who tipped me off. He was like, “I think you may have autism, I think that may be what makes you different,” and I was like “hm yea I think that may make sense,” and so I started down the road of trying to find a place to get diagnosed, and that’s a whole process.
It’s really expensive, which is not fun, but getting the diagnosis made me feel validated because my entire life I’ve struggled with things that my peers haven’t struggled with. I used to think that I was just faulty or there was something wrong with me because I just couldn’t keep up the way other people could and that I was just a bad kid or a bad person. So once I got this diagnosis and I knew that it was actually autism, I felt like my whole life started to make more sense. I’m actually, I’m happy to have this diagnosis. It’s a little overwhelming, but at the end of the day, I’m really happy about it.
Hannah: It’s really unfortunate that females are a lot less likely to be diagnosed, but I’m glad to hear that you feel a lot more validated now that you have been diagnosed. That leads into my next questions, which you partially already answered, but how do you feel that identifying as female impacted your journey to receiving a diagnosis and receiving help? And I guess since we already talked about that, could you add on if being female has impacted the treatment you’ve received since being diagnosed?
Nicole Zizzi: So yea, that’s a big one. Once I got diagnosed, I was like” yay, I’ve been diagnosed, I can finally get the help I need!” and then when I started looking for psychologists and psychiatrists and doctors who knew anything about female autism, there’s pretty much no one, and it’s been really hard to get treatment for anything that I need. So this has been really frustrating.
I actually found this psychiatry clinic at MGH that does treat female-identifying autistics, and that’s been great, but I haven’t been able to find anyone else. I do have a psychiatrist and I’m working on things with my psychiatrists, but he doesn’t always understand everything about female autism, so there are certain things he can’t help me with, there’s a lot he can help me with, but sometimes we hit roadblocks, and it’s just like, I’m the one who has to figure out how to do it on my own, so a lot of times I’m online reading medical journals trying to figure out essentially how to treat myself, and that’s pretty terrible.
It’s ridiculous, I wish it were different. I am trying to be more of an activist within the field of autism and advocating for autistic females or female-identifying autistics, and even people who were born female and maybe transitioned who haven’t been given a diagnosis until later in life or still don’t even have a diagnosis. I want to change how it is, but I don’t know if it’s going to because the research isn't there. It’s been tough!
Hannah: That does sound really challenging, but hopefully research will be able to catch up.
Nicole Zizzi: I do think, I mean it is because the fact that I’m diagnosed now means that the research is coming out more, which is great, but I think it will probably be another 15-20 years until every provider can identify female autism. Like I think we’ll have to go through a whole new generation of students going through med school to finally get that.
Hannah: How does having autism vary between people who identify as male and female?
Nicole Zizzi: It differs in more of the way it’s presented, and it’s actually, this is something that, you know, researchers are grappling with, and I’m kind of still trying to understand. Sometimes it has something to do with more of the way society conditions us because females are expected to talk about their emotions and like dress up with girls and like there’s just certain expectations that society sets on women, and I’m sure it’s the same for everyone like you need to wear pink, and you need to do this and all of those other harmful stereotypes.
I think it affects girls who are autistic in that they are looking at everyone else around them and they just want to have friends and they just want to fit in because society says that you need to have friends, and so they are like ok, how do I have friends.
And this is also a reason why it can be hard to diagnose autistic women because we do something called masking, which essentially means we are performing all the time, pretending we are normal when we are out in public when we actually aren’t normal and are hiding some of our more visible cues that we’re autistic. Like you know sometimes the hand flapping is associated with autistic people and that’s a form of self-regulation, so like I don’t do this in public, I probably did when I was a kid, but now I play with my clothes a lot, or like I’ll twirl things on my clothes or I’ll play with my hair, and that’s something that’s socially acceptable for women to do, so that’s how that started.
But because we mask, it can be hard to diagnose us because our symptoms aren’t always showing and I think that answers the question, did it?
Hannah: Yea, that’s really good and really interesting too. On a different note, how has autism affected your sport, if it has, and how has your sport helped you deal with your diagnosis, made it harder, or affected it in any other way?
Nicole Zizzi: This is a really good question- I like it. Since I’ve been diagnosed, I’ve been kind of realizing that dance has been a hugely positive thing in my life. I’ve been dancing in a dance studio since I was two years old. I’m yet to stop dancing because I love it so much. But I realized that through dancing that that’s how I learned to make friends because in school I didn’t know how to do that. And in dance class, you don’t have to talk, all you do is move and it’s not as a socially high stakes setting, so I grew up in the dance studio where I felt that I belonged.
In some ways, dance is something that goes on stage that is performed for an audience to watch, and in most cases, an audience wants to see something that’s extraordinary or something that’s different from the norm. So I like to tell people I belong on stage because I am different and I feel like I belong on stage, and I feel like it is home and it’s safe because I know that I am special there and I know that people want to watch me.
Dance essentially gives my life meaning and if I didn’t have dance, I don’t think I would be able to interact socially with people as well as I can now or even speak verbally as well as I can now. Because I have confidence in myself, I am able to start to talk, even though sometimes I have a hard time figuring what words to use, which is part of autism, but the dance studio gave me confidence.
I’ve also realized that dancing is a form of stimming, which is essentially a way to self-regulate. Autistics and anyone who’s in the neurodiversity spectrum, so people with ADHD or OCD- I also have both of those- they also do something called stimming.
Basically, your nervous system is always on and always on full volume and is hard to turn off, so sometimes what autistic do is called stimming and they try to find a way to release that extra energy in their nervous system, and I’ve realized my way of doing that is dance, and I’m that kid, I’m not a kid anymore, but I’m that woman who is still- in my apartment I made one of my rooms a little dance studio- like I go in there every day and I move and I dance, and it’s just part of my daily routine because if I don’t do that, I one can’t sleep because I can’t turn my brain off, and two I just feel better all around because I am able to get all of that energy out, so I am really happy I have dance in my life and I don’t know what I would do without it.
Hannah: That sounds really cool. How have people treated you differently since your diagnosis, and how have you responded to that?
Nicole Zizzi: That’s a great question, you know, no one’s really treated me differently, but I have been selective with the people in my life who I tell. There is a list of people who are blocked from my Instagram account who I don’t want to know, and I feel like I haven’t told anyone who would react negatively to it. All the people I’ve told I’ve felt safe with and I know that I can tell them anything and they know who I am and wouldn’t judge me.
On the personal front, nothing has really been negative about me essentially coming out about my diagnosis, but in terms of healthcare providers, I’ve had a lot of them be like “no, you don’t have autism Nicole, you’re making that up, you’re fine,” and I’m like “I have a 20-page document with my diagnosis proving that I have it and you’re still telling me that I don’t have it because I can talk well and I’m social,” and people just think that if you have autism you can’t do any of those things, and that’s just not true, so I get really frustrated with healthcare providers when they say that to me. And you would think that they would be the ones who are understanding and willing to help, but they’re not, so yeah, that’s that.
Hannah: Yea, that definitely sounds really frustrating, and it’s interesting- not in a good way- to see how stereotypes about both women and people with autism play into how people are treated especially in healthcare. Who and/or what has been the most inspiring throughout your experiences?
Nicole Zizzi: Well, in terms of more of like professional life, both in dance and in architecture, I have some mentors who are professors of mine who have really helped both shape who I am and figure out who I am in a way that’s authentic to me. So like one of my college dance professors- I graduated college in 2015, so that was omg, that was 6 years ago, omg I’m really old!- so I still talk with her. I zoomed with her the day before I went in for my hip surgery like that’s how close to her I am, and she’s always really inspired me in the way that she teaches and in the way that she holds herself and in the way that she practices her own choreography and dance.
In grad school, I’ve had a lot of good professors who have helped define my path as an architect. I’ve always connected the most with teachers and professors, and I think that’s probably because I love learning, and I think learning is a special interest of mine. So basically, autistic special interests are that autistic people are known to get super super intense about subjects that they really really love.
So like, the stereotype- and I hate to use a stereotype but I think it will help contextualize this- of autistic boys loving trains and talking about trains all the time would be a special interest, which is funny because I also love trains. I love construction sites, and I love cranes, and I think cranes are the coolest thing in the world. I’m actually doing my master's thesis on them.
Dance is a special interest of mine. They are something we can get hyper-focused on, and sometimes because I am able to do that hyper-focusing, I lose track of time, and like I can go 9 hours without leaving a single spot if I’m working on something I’m interested in, and like not realize that I haven’t eaten all of my meals for the day. I have to put systems in place like alarms and calendar notifications to make sure that I remember to eat and that I remember to go to class and that I remember to do all these things because special interests can really get you stuck in your own brain sometimes.
Hannah: What have you found to be the most supportive and helpful from others throughout your journey?
Nicole Zizzi: I would say friends who listen to me and who let me be authentically myself, and honestly, I think my friends, especially my friends from my dance company have been super supportive. My dad passed away in 2019 and I was the one who had to take care of him, me and my siblings had to take care of him while he was dying because our parents are divorced and he had never remarried. When all of that happened, my friends sent me a blanket, and they sent me a gift card for Grubhub so my siblings and I could order food together. After my dad passed, they let me talk about him a lot, and they let me basically make a whole show about him inspired by my experience with him, and I think that’s, you know, that’s the best type of friend you can get.
Hannah: That sounds really tough but also really amazing too. Conversely, what have you found to be not so helpful?
Nicole Zizzi: I think it’s really unhelpful when people are like “oh, my cousin has this”- whether it’s autism or OCD or something else- “my cousin has this and this is what works for them, have you tried this yet?” I hate when people do that and they pretend they know more about the subject than I do, even though they’re not the ones living with it, and that is really really unhelpful.
Hannah: That definitely sounds annoying. Based on your experience, how can sports be more supportive and inclusive towards athletes with autism?
Nicole Zizzi: I think I kind of touched upon this when I was talking about dance, but being able to be part of a team or a family in dance or a cast in theatre, like being a part of something is really, really helpful for autistic people because we have a hard time making friends, and we don’t know how to do small talk.
Honestly, if I look at my life, all of the friends I’ve made, I’ve only been able to make either through school or dance or some other organized activity where there’s an end goal in mind because I don’t know how to go to a party and sit and talk to people because I’m like, what’s the point in talking about this when we can go and do something that’s actually real.
I think that one of the most important things that a sport or a dance team or whatever can give to autistic people is just a sense of belonging and inclusion. Honestly, that’s the biggest thing because a lot of the time, we’re left out of things.
Hannah: How can allies support people with autism better?
Nicole Zizzi: Listen to them. If they tell you, I don’t know, if they tell you something about themselves, don’t negate it. Validate it for them. Learn something from an autistic person or do research about autistic people.
If you do your own research, I would also first verify with an autistic person because some organizations, like Autism Speaks, is not a good organization and is actually a hate organization that has actually partnered with white supremacy groups in the past, so I don’t recommend Autistic Speaks- but do research, verify with an autistic person, and then advocate for them.
Sometimes they can’t advocate for themselves like sometimes I can’t advocate for myself simply because I go into a freeze state where literally I just can’t find the right words. It’s actually called selective mutism when an autistic person gets super overwhelmed and just shuts down and can’t use language because they can’t access that part of their brain. If someone knows that they’re autistic and can help them first of all calm down when that happens, and second of all help them bridge the gap between whatever communication they are trying to make, I think that that’s a really helpful thing that an ally can do.
Hannah: What advice would you give other neurodivergent female and non-binary athletes?
Nicole Zizzi: You know, just keep doing you and stay authentic to you. You will find a place where you belong, and there are people who want to be friends with you. If you’re on a team or in an environment where you’re not being supportive, don’t be afraid to leave and find another one. Sometimes you have to try on different things- I say this about therapists too- before you find something that fits the way you want it to fit. So don’t give up- I think that that’s my biggest piece of advice.
Hannah: That’s really good advice. That was my last question, and thank you so much for doing this interview. It was really helpful, and I definitely learned a lot!