Autism Stories: Haley Moss
Posted on 04/10/19 in Milestones Conference by Milestones
2019 Milestones keynote Haley Moss, Esq., recently sat down with our friend Doug Blecher from Autism Personal Coach to speak about her journey as a young woman and attorney with autism, her experiences in college and how she's sharing what she's learned with others in her shoes to create a more supportive community for individuals on the spectrum.
Milestones is excited to provide a transcribed version of this original interview for our readers. Parts of this interview may be abbreviated for the sake of length and flow. You may listen to the original podcast here.
DOUG: Hello everyone and welcome to Autism Stories where we connect you with amazing people that help teens and adults with autism become more independent and successful. I’m your host Doug Blecher the founder of Autism Personal Coach. Recently, I had the opportunity to talk with Haley Moss about what life is like for college students with autism. Haley was diagnosed with autism at age three and today she holds a juris doctor from the University of Miami School of Law and a BA and a BS from the University of Florida. Haley is an artist and an author of two books: the first being "Middle School- The Stuff Nobody Tells You About" and the second book, "A Freshman Survival Guide for College Students with Autism Spectrum Disorders" and we’re going to talk with Haley about that book today. Her work has been featured in the likes of CNN, Huffington Post, NBC and much more. We hope you enjoy today’s conversation.
DOUG: Thanks for joining us, Haley
Haley: Thank you for having me.
DOUG: I read where you talked about a village leading to your success which I think is so important. Can you talk a little bit about who has been a part of your village leading to all your success?
HALEY: I always say that it takes a village to raise a child and it takes an even bigger village to raise a child with a disability, especially in autism. My village in particular has been my family. My family is my rock, my parents have been there every step of the way. They are the absolute greatest; I can’t say enough great things about my mom and my dad. My village has also had plenty of teachers, professors and everyone at the University of Miami Center for Autism-Related Disabilities. They diagnosed me at three years old and have literally been there every step of my journey ever since. I made it through law school and they’ve been there ever since and now I can continue to serve them, anyone who has reached out to me over the years who I’ve been able to help and support. It’s just been an exceptional journey. It wouldn’t be possible without the many, many people who have been a part of it.
DOUG: I recently read the college book, "A Freshman Survival Guide for College Students with Autism Spectrum Disorders: The Stuff Nobody Tells You About!"; I know it’s been a few years now but why did you decide to write this book?
HALEY: I decided to write about college because when I was applying to college, and I was excited to go to college, there was pretty much nothing out there that was by people on the spectrum for people on the spectrum; what few resources there were were written by professionals. I didn’t feel equipped in the way that I wanted to feel equipped, to know what to expect and what was hard for others. I went to a big school. I went to the University of Florida which I think is about 50,000 people now. Nothing was out there about going to a big school, nothing was out there about all the different resources and opportunities. It’s the first time I ever saw things that I thought belonged in the movies. When the movies are your best basis for things like what a frat party is, you’re going to be very confused when you get there in real life. So I realized that I didn’t want the next generation or the next group of potential college students to feel lost in transition and to not know how to be independent, not knowing if they wanted to go to college or what they want to do.
I know the transition of becoming a freshman is hard no matter who you are. But I think for students on the spectrum, there are additional considerations and there are things that need explaining.
And with the way that things change in our world even with technology, social media and things like that, it’s not like our parents have the answers to everything either. College isn’t what it was when our family members were in college. So I think even being able to be a resource for others on the spectrum and their families is the main reason I wanted to do this - to make sure that it is easier for someone else, a high school senior or a new freshman doesn’t feel as lost, confused, or as if there’s no guidance for them like how I felt.
DOUG: Yeah, I think that’s so important. When you’re a college student with autism, sharing this information with others is certainly a personal decision, whether to share this information or not. I know in your book you talk about your decision to disclose this information. Can you talk about what was behind making this decision for you?
HALEY: I’m willing to be very up front about it. Disclosing that I’m on the spectrum is not something I have to think about. It is kind of a decision that by virtue of the fact that talking about autism and living this as part of my life is who I am. I don’t feel like I got to make that decision in college to "come out" per se. A lot of students can get that decision but by virtue of having written a book about middle school, having been on television when I was in high school and having been open at that point in my life honestly made it no secret. You can Google my name and you’ll see stories about when I was the new kid at school that I was on the spectrum. It was nothing to hide, it wasn’t a secret. Naturally, the fact that it was public domain made it easier to disclose it.
In hindsight, I realize more it wasn’t whether to disclose or not to disclose for me as much as it was how I wanted to frame that conversation. Because there are people who I’ve met who haven’t met someone on the spectrum before or only see what they see on television or a very far-distance relationship, like somebody’s brother’s cousin. Having to frame the conversation about autism wasn’t so much about disclosure but ‘this is how autism affects my life, this is what autism is for me’ because as you know, not every person on the spectrum has the same challenges and strengths. So having to explain how it affects me was the conversation that I was going to have at that juncture of my life more so. So I think that’s the decision I had to make more so than ‘oh I gotta tell people’ because even before I got into this line of work and before I started sharing my story, it was a very personal decision whether or not we’d tell someone I was on the spectrum. It was a decision that stayed within my family and very close friends, or on a need-to-know basis and with educators. But as I got older, it’s not something I’m ashamed of whatsoever, it is something I enjoy talking about. I’m happy to answer questions, I’m happy to explain that I have a different way of seeing the world.
DOUG: And looking back on your college experience, can you talk about those who you think it was most helpful to share this information with?
HALEY: I think the people it was most helpful for and the people that it should have been most helpful for on paper is not always the same, which is an interesting thing. So I didn’t share as much with my professors, teachers and TAs because I never struggled academically. Most of my challenges are and always were more in the social sphere of things. I told Housing which was very big because they eventually helped me get a single room after I had issues with a roommate. I think that was very helpful. When I think about it, I realize that was probably the most helpful thing that happened, that I eventually got to live on my own.
I think with friends and having people understand that there are better ways to communicate with me, that made that helpful. Also in personal, romantic relationships, that is incredibly helpful to have someone understand this is how autism affects me and this is how it also might affect our friendship, our relationship and certain aspects of the social side of college. Because most of college isn’t spent in class. It’s spent with other people socializing at clubs and in the dorms that are inherently social by their nature. So I think in interpersonal relationships is where disclosure helped me the most because some people knew and it was easier to be direct with me.
DOUG: I’ve seen with many of our clients that are college students, when we first meet them, they’re pretty isolated on their college campus. Do you have any suggestions to help students become less isolated?
HALEY: First off, I think it depends on where you go to school because at a smaller campus, I think it is easier to feel less isolated than at a larger campus. There are things that had I been able to do it over again with the knowledge I know now, I probably might have done it a little differently but I think getting involved with some organizations is a great way to go. Stick to what you know and what you’re passionate about and you will meet people who are equally passionate. There are a ton of college organizations especially on big campuses. If not, you can start one. I think leadership is a great way to get involved. Getting involved in your major if you know what you want to do is a great way to meet people to. And even if you have no clue what you want to do or no clue where to meet people, stick with your dorm. Your resident assistants, or as I like to joke, ‘an older student who knows what they’re doing’, they will usually put on some events or something social where you can meet some people you live with. Even if it is just a movie night… the best things about those is you can come and go; I always thought those were great. Something that is probably not the most typical thing that I’d recommend for someone on the spectrum, but at least where I went to school, and I wish I did this… it’s to look at the Greek life. It’s something I never thought I would do or say. I did not join Greek life but on a campus like UF, it is something I wish I’d considered because I probably would have made friends even if I didn’t join a sorority. I probably would have met people by just going through the process.
DOUG: Sometimes, students just need time to be alone so they can decompress from the stress of college. How did you go about finding the balance between socializing so you weren’t isolated but getting that much needed time for yourself?
HALEY: I don’t feel like I socialized in college as much as I should of or wanted to, I always kind of kept to myself. I was even like that in law school. I realized that I keep to myself and walk to the beat of my own drum. I’m okay with that. Not everyone is – some people need to be social all the time... I didn’t. I realized I needed time to myself and whether that was walking around a mall, or just sitting my room reading a book or playing video games, or watching movies, or doing anything like that - I realized that alone time was something I always needed. No matter what juncture I’m at in life, I try to do this - I always try to carve about an hour out of each day for me. Whatever I do with that hour is something that is going to make me feel decompressed, relaxed or recharged for the next day. Sometimes that is exercising, sometimes that is watching TV, or just sitting down and eating a good snack. It depends on the day and what my body and brain needs. If you need more than an hour, if you need a day or two days, or maybe 20 minutes then… know yourself. That’s always really big advice I always give: you know your body and you know what you need, and you know what your mind needs more than anyone else will. Trust yourself and know what you need. Sometimes you might really need a nap and that’s okay.
DOUG: And in regard to students needing time for themselves, certainly sensory processing issues can help contribute to that. What environments in college were a struggle sensory-wise for you and what strategies did you have to deal with those places?
HALEY: Probably the biggest sensory struggle environments for me were parties. I was never a partier but by virtue of having friends that were in fraternities I would sometimes get invited and agree to go to be a good sport and it was too much for me. I was not a drinker, I was not a loud and crowded kind of person. I’m still not. Really loud music, lots of talking and a ton of people in a small space – I won’t do it. Parties were my Achilles’ heel. I would always have a plan if I would go – stay long enough to say hello to the people you need to say hello to or go with a friend who knows there’s a code word that means "I gotta get out of here, I can’t handle this." Anytime I walked into a situation that I felt might be too much for me, I always had an exit strategy. I still do this with events that I don’t know if I’m going to be comfortable at…
The other environment other than parties that I think was too much for me was basketball games. I loved going to football – my football stadium at UF had 90,000 people and I don’t even know how to describe it but that didn’t bother me. Basketball bothered me because I would hear squeaking of the shoes no matter where I was in the arena. The squeaking was too much for me and the joke amongst my friends was “Haley can’t go to basketball games with us” and that was okay. When we did go or I agreed to go, I would say “we’re leaving after the first quarter” or “if I leave, don’t be mad” or “just know that I’m leaving because it’s too much for me.” Communication was really key and that is something I noticed with all these situations with sensory issues is being able to communicate in some way that this might be too much for me or I don’t know if it will but I’m willing to try… got me a lot farther than bailing out and having people go “what’s wrong with you?” or “what happened?” or “is there something we need to know about?”…
DOUG: I read when you went to college, like most college students, like myself, you weren’t certain what your major was going to be. So for you, what was the process of deciding what major you ended up choosing?
HALEY: I stuck to what I was interested in. I knew that I was always interested in understanding people. I think that might be a part of being on the spectrum, that people don’t come naturally to me, and understanding them is so fascinating. I think being on the spectrum sometimes is kind of being an outsider looking in because you’re not from the same planet as everybody else. So it is really interesting to get to understand people so I knew that I loved psychology… I added a second major because I also really liked school, I was good at school, and I didn’t want to graduate in two years. So I added a second major and I realized that I was probably going to go to law school. So I thought that criminology was really interesting and it would play off nicely with my psychology background. I ended up double-majoring and had room for a minor as well. For a minor, generally my advice is even if it isn’t something you’re going to make a career out of or maybe you will, pick something that is generally interesting that you would be okay taking three, four, five classes in. That thing for me was disability studies… I knew that I loved disability stuff and as I person with a disability I always felt I had something to contribute and I thought it would be interesting to understand things more critically so I picked up a minor there too. Try to have an idea of what your end goal might be because once I realized I was probably going to law school, it made things easier to pick a major…
DOUG: Much of what we talked about already is in your book and if someone wants to get a copy of your book, "A Freshman Survival Guide for College Students with Autism Spectrum Disorders", other than asking to borrow my copy, how would they go about doing it?
DOUG: In addition to being an author, you’re a lawyer as well as an artist. I read you wanted to go to law school and be in disability law. Where are you currently in that journey?
HALEY: I graduated law school back in May, I took the Bar exam in July, found out I passed in September, and I am currently working at a law firm right now.
DOUG: That’s awesome. Sounds like your journey’s going quite well.
HALEY: One thing at a time!
DOUG: My wife is an art therapist which has helped me gain a greater appreciation of art. I know you’re an artist so what type of art do you do and how are people able to see your work?
HALEY: My type of art, I would describe as “anime meets pop art” so I’m really inspired by the Japanese style of art and animation. I also just love colors and pop art… things that have color… If you would like to see some of my work, you can visit my website at haleymossart.com.
DOUG: Lastly, I read your personal mission was based on something your mom told you as a child. Can you share that with all our listeners?
HALEY: My mom told me that different isn’t bad, it’s just different. And different can be extraordinary.
Want to learn more about Haley? Come meet her this June at the 2019 Milestones National Autism Conference when she shares her insight through a keynote and multiple breakout sessions on Wednesday, June 12. Register here!