“I want to be there for other autistic people the way my mom was there for me, with the additional level of having actually experienced autism firsthand. It is so empowering to have someone genuinely care about you and understand you.” Brielle Williams
By Ron Sandison
I was excited to interview Brielle Williams, a graduate of Brigham Young University and a Making a Difference for Autism Scholarship winner. Brielle is a behavioral health technician and speaks across the country at conferences. She is a powerful advocate who has a passion for making the world safer for children and teens with autism and a desire to obtain a post-graduate degree to impact autism research and therapy. Brielle’s interview provides insight into the autistic mind and our challenges with sensory issues and socializing.
1. What was your experience in elementary and middle school like? At what age were you diagnosed with autism and what events lead to your diagnosis?
I was ostracized by my peers in elementary school, I can remember asking to play with peers during recess and being turned down. This was bothersome, but it became more pressing from middle school onward. I think age 10 is when other people start to notice something “wrong” with you. I was a little strange and out-there to my peers, while also lacking any connection to them. It was this lack of connection with peers that led to me receiving a diagnosis at the age of 14. A lot of little signs built up, but it came down to my occupational therapist basically telling my mother that I was autistic. We, and by we I mean mostly my mom, then spent four years trying to get a referral from a doctor or psychiatrist before finally going to a specialty clinic out of pocket.
2. How did your parents respond to your autism diagnosis?
My parents celebrated my diagnosis! They loaded up the entire family and took us out for frozen yogurt to celebrate finally understanding who I am. I am so blessed to have parents who decided autism was something they should treat with love and not something they should treat with shame.
3. As a child and young adult what were some of your passions and interests?
I have always loved reading. In elementary school the other kids didn’t want me to play with them, so I found solace in the Nancy Drew book series. I could buy them used from the library for a quarter each, and I still have that collection at home. I also loved music. My family called me “the singing bush” because I started singing around my first birthday and never stopped. The first song I ever learned was “Family Tree” by Ben Kweller. I picked up the guitar in fifth grade and have been playing ever since. Music helped me feel a part of the world the way other things didn’t – no matter how alone or different I felt, there was always a song centering on the same feelings I had.
4. What are some challenges you experience because of your autism?
Social communication is definitely the hardest thing for me. I felt like I didn’t deserve to be friends with or be around other people because I could not connect with other people which then morphed into an extreme fear of social interactions. I was terrified that I would mess up the interaction and be even more ostracized for it.
I’m still pretty terrified of people, but I’ve worked hard on being by myself and liking who I am alone. Even if I never have any close relationships outside of my family, I will have myself which is not such a scary concept anymore.
5. Did you experience any sensory issues and if so what were they and how did you learn to adapt?
Food has been a continual nightmare my entire life. My parents heard advice that to “break in” picky eaters, they should keep me at the table until I had at least a bite of every food. I would scream and cry at the table to try and get away from eating unsafe foods. After my diagnosis they stopped doing this because you can’t force-feed sensory issues out of people. I have avoidant/restrictive food intake disorder (ARFID), which is basically extreme picky eating.
For a long time in my life, I ate about twelve foods and that was it. It wasn’t until I was 19 and saw how much my then-girlfriend loved food that I realized how much I was missing out on. Luckily, my palette has expanded, and I have about fifty foods I can eat now, which is not a ton but I’m very happy about my food growth.
Outside of food, I have intense sensory avoidance behaviors. I can’t leave the house without my noise-canceling headphones, or the layers of noise will trigger a meltdown. I didn’t understand this until college, so I couldn’t accommodate with my headphones until then. I would have meltdowns in the high school cafeteria because I could hear every conversation in the lunchroom. My school eventually let me eat in the hallways/classrooms to get away from all the noise.
As a child I wouldn’t wear any clothing, socks, or shoes. My mom and I would fight every morning getting ready for school. My occupational therapist put me on “brush therapy”, and it changed my life. I can wear tights and leggings and long-sleeved shirts and socks and so many other articles of clothing I want (besides denim). I can brush my hair without crying and freaking out. That’s been hugely influential in helping me “be a person”.
6. How did your parents use music to help you develop social skills?
Music was the only thing that got me involved with other people. My parents enrolled me in group dance and music classes to get me to interact with other people. They’d volunteer me to sing in church choirs and quartets to get me to interact with people. I joined every after-school activity that involved singing that I could, which involved me with the theatre department in high school.
When I got more serious about music, my parents found an amazing vocal coach for me who helped me learn to trust and rely on adults in my life.
Singing also gave me confidence that I wouldn’t have had otherwise. In my freshman year of high school, I won the “Rising Star” award at a state-wide music competition, which gave me more confidence and helped me carry myself a little better. Winning that competition got me into pageantry, and that really helped me develop my interpersonal skills. Half of pageantry is the interview, which is just interpersonal skills. I credit my ability to speak, both publicly and in conversation, to pageantry.
7. How have you been a role model for your two autistic siblings?
I called my sister and she said she wants to sing like me and perform in pretty dresses and play the ukulele like me. Which isn’t specifically autism-specific, but it was nice to hear. I would like to think I give my siblings a little more confidence in their ability to be independent. Living on my own is hard for me, but I can do it and so can they!
8. What did you enjoy most about college at Brigham Young University?
Going to BYU was a hard decision for me, but the autism board made it way more enjoyable than I thought it was going to be. I had never met another autistic woman, so joining a group where there were other autistic women, and our voices were important to the university was so special for me.
9. What was your major in college? Did you receive any accommodation in college?
I majored in Psychology! I had a ton of accommodations, but the best ones were (1) A private testing room. At my college, we had one giant testing center where everyone packed into a large room to take exams. I would have had meltdowns mid-test if I was in there. So, I got a private room where I didn’t have to take tests around other people and could wear my ear defenders; and (2) Automatically being assigned a group in group assignments. I have a weird social rule for myself where I cannot invite myself to things, which is totally terrible for group projects. In my first week of class, I had to find a group for a semester-long project and almost burst into tears because it was so overwhelming. From that point on, I had an accommodation where my professor would add me to a group without me needing to ask around to join a group. Of course, I could put myself in a group if I wanted, but I never did.
10. What advice would you give to fellow college students with autism?
Take advantage of accommodations! My school worked with me well and gave me so many autism-specific accommodations that helped me do my best in the classes. I’ve heard that some people feel guilty using accommodation, but I don’t think anyone should be. At a panel I was on, a professor asked me how I ease the guilt of getting a “leg up” on other students. I did not appreciate the loaded question. I told her that the accommodations level the playing field, they don’t give me an advantage. Plus, I’ll never be able to wear jeans in my life, which deserves some sort of compensation.
Also, you don’t have to take a full course load. I took 17 credits my first semester, and then 12-14 every semester afterwards. My accessibility counselor at the school told me that autism adds 3 more credits to my workload, so I should act accordingly.
11. What lesson have you learned from your mom on being an advocate?
My mom was the first person to ever advocate for me even before my diagnosis. She had to advocate against doctors to get me diagnosed! I learned just how powerful having an advocate and someone in your ring can be. She’s changed my life. I start to tear up whenever I think about everything my mom has done for me to be able to effectively advocate. She went back to school and got her Master’s in Special Education: Applied Behavioral Analysis to know how to best support me (and then my siblings). I love her so much.
I want to be there for other autistic people the way my mom was there for me, with the additional level of having actually experienced autism firsthand. It is so empowering to have someone genuinely care about you and understand you.
12. What sparked your interest in being a professor? What are some topics you enjoy researching?
I want to be a professor because I love academia! I love reading research, writing papers, and influencing the current field of autism treatment. I also love teaching! As part of my graduation requirement, I chose to assist in teaching a course on Behavioral Neurobiology where I adored lecturing, grading, answering questions, and giving feedback.
My research interests are almost always autism. I have two literature reviews on autism currently in publication. One about disordered eating in autistic girls and one about sexuality in autism. I want to dedicate my life, post-graduate program, to inappropriate sexual behavior and studying sexuality in autism. In my ideal world, I would write a SexEd program for Special Education classrooms focusing on sexual assault reduction. Those with higher support needs are at an incredibly elevated risk for sexual assault, specifically in childhood and teen years. I want to help decrease this by giving parents, clinicians, and children the right information to stay safe.
13. What do you enjoy most about being a Behavioral Health Technician?
I really love the feeling that I am helping to make the field more compassionate. ABA has a bad reputation among autistic people for a reason, but the interventions are helpful. Instead of just throwing away the entire field, we should actively work to make it better. I love doing my part both in my sessions and when I speak to other people in the field. Hopefully, I am making the field kinder towards the people who need ABA services.
I also love kids, especially autistic children. I see so much of myself in them and want to make things easier for them. I’ve been with one of my clients for over a year, and if I think about her and how far she’s come and how proud I am of her for too long I will start crying. I am continually inspired by the children I work with and how resilient they are.
14. What advice would you share with young adults with autism who struggle with developing friendships?
If you talk to enough people, eventually you will find someone you connect with. I’ve never really gotten or clicked with other people, to the point where I, for a long time (and still a touch), considered myself more robot than human. But I wasn’t actively trying to find people I connected to. Now, I actively try to make friends and have realized that people like me more than I think they do. And that I am, in fact, human. I just needed to put myself out there more.
I also suggest trying to find people with similar interests through group activities. I’ve really wanted to join a book club, as it’s a way to turn something solitary into a group activity. A lot of my hobbies are solitary, so I have made friends with my co-workers which has been great for me. I was so scared of my co-workers that I didn’t talk to them for the first few months I worked at my clinic. But people are a lot nicer than I tend to give them credit for.
15. What advice would you give to young people with autism on employment?
I have a few tips: (1) Try to find somewhere that will accommodate you, (2) start with as few hours as possible and work yourself up, and (3) find a job that lies within your passions.
Legally, workspaces are required to accommodate disabled people to the best of their ability, though it is kind of a grey area for autistic people. I would ask about accommodations available immediately after being hired and then actually use those accommodations. They are there for a reason!
Autistic burnout is so real, so you shouldn’t try to do 40-hour weeks right away if that’s not sustainable for you. I started at my current job working 12 hours a week and have worked my way up to 42 hours a week over the last year and a half. Also, if you can’t work full time (or at all), there isn’t any shame in that. Your worth does not lie in your ability to make money you are so much more than that.
I am very lucky to work in a field that lets me actively engage with one of my special interests (autism) every single day. I have a lot of passion for not only autism interventions but also for improving the current field. My clinic (Autism and Behavioral Intervention in Draper, UT) really strives to listen to autistic voices and will often ask me for my opinion on different treatment plans and goals. I get to fully immerse myself in what I love and feel like I’m actually making a difference.
16. How can we make the world safer for autistic children and teens?
The best way to make the world a better place for autistic people is to totally embrace weirdness. My life has become so much better since I stopped shaming myself for my “quirks” and began celebrating myself for them. While I was “weird” growing up, I’m now “interesting”, even though my passions have barely changed. I wish all people would approach autistic people as interesting, rather than weird.
17. Share a humorous college story.
I had severe social anxiety starting college, so I spent my first semester pretty much isolated in my bedroom. It was also the start of COVID, which meant almost all my classes were online and I would walk into the dining hall, grab a meal, and then leave. One day, I decided to eat at the student center (it had a Taco Bell and I love Taco Bell).
As I waited for my burritos, a girl walked by me in a full hot dog costume. I stared at her for a second, then looked around to gauge other people’s reactions. To my surprise, no one was even giving her a passing glance.
While the story might not be the most humorous, it was funny and shocking and de-centering for me. I learned that people do not care as much as I assumed they did. If no one gave this walking-talking hot dog a second glance, why would they care so much about what I was doing? It shifted the way I viewed other people and helped me shake a lot of my anxiety around people. They aren’t staring at me or even thinking about me. It was a hilarious and relieving discovery.
18. What are some of your academic goals?
I’m currently applying for Ph.D. programs, so that would be my biggest goal. I want to get a Ph.D. in either Autism Studies or ABA and focus on severe challenging behavior and the barriers that prevent challenging behavior from decreasing.
There’s a big lack of resources in public schools for children who would do well in school but may have behaviors that are inappropriate for the classroom, so it would be interesting to do a survey of these barriers and try to address at least one of them for my dissertation. That or going into schools and training the Special Education teachers on behavior reduction techniques and seeing how that may change the behavior in the classroom. I really believe that all children should be given the means to succeed, so I want to try and find a way to get them there.
Brielle Williams’ BIO
Brielle Williams is a recent college graduate on her way to getting a Ph.D. Brielle was diagnosed with autism at age 14, but her parents knew she was autistic when she was about 10. She comes from an autism-ADHD family, where every member of her immediate family has autism or ADHD or both her family life is hectic, but she wouldn’t have it any other way. She absolutely loves mystery novels and is always open to recommendations. Brielle has worked as an RBT for almost two years now, mostly working in maladaptive behavior reduction in early childhood aged children. She recognizes some of the downfalls of and difficulties with ABA and wants to work to make the field as compassionate as it can be, specifically through “person-first, client-second” therapy. She is incredibly passionate about making the world a safer and kinder place for all autistic people. To learn more about Brielle: https://pactautism.org/blog/
Ron Sandison works full time in the medical field and is a professor of theology at Destiny School of Ministry. He is an advisory board member of Autism Society Faith Initiative of Autism Society of America. Sandison has a Master of Divinity from Oral Roberts University and is the author of A Parent’s Guide to Autism: Practical Advice. Biblical Wisdom, published by Charisma House and Thought, Choice, Action. Ron has memorized over 10,000 Scriptures including 22 complete books of the New Testament and over 5,000 quotes. Ron’s third book Views from the Spectrum was released in May 2021.
Ron frequently guest speaks at colleges, conferences, autism centers, and churches. Ron and his wife, Kristen, reside in Rochester Hills, MI, with a baby daughter, Makayla Marie born on March 20, 2016.
You can contact Ron at his website www.spectruminclusion.com or email him at [email protected]
