Want to make a difference? An autism advocate shares her tips
Susana (Susy) Perez is a single mom of three autistic boys: Mason, 10, Robert, 6, and Jacob, 3. When her oldest was first diagnosed, she took up the charge to learn as much as she could to become the best possible advocate for her children.
Amidst the vibrant hues and sounds of Mexico, Susy began a journey that would see her conquer language divides, break cultural barriers and emerge with a master's degree in special education. But that was just her beginning. Today, in the heart of the Rio Grande Valley, Texas, she's turning the tide for countless Hispanic families. Autismo en mi Vida, her pioneering non-profit, is not just offering bilingual support; it's revolutionizing the way Spanish-speaking families perceive and tackle autism. And with the platform of the Autism Speaks Advocacy Leadership Network at her side, Susy is amplifying her message: empowering others to rise as advocates and changemakers in their own right.
Dive into our exclusive Q&A as Susy unfolds her inspiring journey to becoming an autism advocate and offers invaluable insights for families eager to ignite change in their communities.
You’ve become a beacon of hope and guidance for many in your community. How did your early experiences shape you into the advocate and mother you are today?
Before Mason’s autism diagnosis, I didn't know anybody who had a child with a disability. It was very overwhelming at first, because I had no idea what I was doing. I knew my child had rights, but I didn’t know the system. I didn’t understand the law. I didn’t know English very well, and special education seemed like a foreign language.
At the time, there were not a lot of resources in Spanish in my area, so I decided to go back to school and get my master’s degree in special ed so I could learn to advocate for my son. Never did I think I would use my degree for anything other than to help my own son, but I realized I could share the information I learned and really help others in my community.
What inspired me to become the mom I am today was seeing my mom doing the same thing when I was a child, because I grew up with a disability myself. When I was little, I had a really bad stutter, to the point where I was bullied and struggled to go to school or even get out of bed in the morning. It was really traumatizing as a kid. I grew up in Mexico, and my mom traveled all over the country with me trying everything to help me. I remember how strong she was, but how alone she felt. I didn't feel I had a voice back then, but my mom made sure that my voice was heard. So that is what I am doing now for my own children. We are a team—I want their voices to be heard, and I want them to be happy and independent in whatever way that means to them.
How did Autismo en mi Vida evolve into a crucial resource and tight-knit community for families in need?
Eight years ago, I formed Autismo en mi Vida with four parents I met in my son’s therapy office. It was a very small group and we just wanted to find people that we could talk to—somebody who could understand what we were going through, and somebody who we could ask questions. We live in a community that is very small, so we didn’t have a lot of resources and everything was in English. All the trainings that we found in Spanish were outside the U.S. and didn’t apply to us.
That small group grew—we started bringing in speakers to provide training opportunities for local parents. Then COVID happened, and we discovered that we could use Zoom to do the trainings. Now, we host free trainings with live interpretation because we understand the need for information in Spanish in our area.
We never thought Autismo en mi Vida was going to turn into an actual resource, but it’s making a difference in so many lives. We’re collaborating with other organizations and non-profits to bring more resources to families. I’ve been working with the University of Texas, Rio Grande Valley (UTRGV) on a program that teaches parents evidence-based strategies to help them with communication, behavior and social skills. We’re also helping to recruit families for the Caregiver Skills Training program at the UTRGV.
These programs empower families to feel like they can do this and they are not doing it alone. But I think what's even more powerful is that we're building community. We're connecting parents with each other. We're going to birthday parties together, we see each other at the carnival, and it's just really nice to have that second family and that support system. It makes all the difference.
How can interested individuals tap into your platform to access trainings and join this supportive community, ensuring they're not alone on their journey?
We have a public page on Facebook that anybody can “Like”, as well as a private Facebook group for only parents local to the Rio Grande Valley. We're always posting our trainings on our public page—they’re free and open to anybody who wants to join. We have people joining from all over, and because there's live interpretation, anybody can benefit from the training if they're interested. We also have a website where we share info, a calendar of events, trainings and resources for everybody. So come join us! Build community, because it's a long, lonely road if you let it be, and it doesn't have to be like that.
Navigating the world of autism within a family and broader community often requires advocacy, connection and courage. Can you share your advice on how families can become stronger advocates to make a difference?
If you're at a family dinner, start by educating your family members about autism. By doing that, you’re helping others. Your kids are going to be somebody's neighbor, somebody's coworker, somebody's husband or wife. So, we have to make sure that everybody is educated and aware, and it does take a village to get there. By educating your own family and advocating in your own household, you're already a leader. You're already making a difference and you're not only helping your kids—you're helping mine.
It’s also important to build your own community, your own village, and try to make connections with the people around you. It does take getting out of your comfort zone a little bit. If you’re waiting for your child at the therapist, turn around and make conversation with the mom next to you. That goes a long way, because you make a connection, then you start seeing them every week, and next thing you know you're having coffee with them.
If you’re joining meetings with other parents, speak up! Share your story, because your story is yours and it's powerful and it's unique. You never know who needs to hear what you have to say, and you never know who you're inspiring.
And lastly, know that it’s ok to ask questions and ask for help. In our culture, we're brought up to do things alone, but asking for help doesn’t make us less. It will surprise you how amazing everybody in this community is and how everybody wants to help. They will embrace you. We don't have to do this alone and we can find amazing people out there that are willing to help.
How has advocating for autism transformed you personally, and how do you see its ripple effect in inspiring and empowering others to make a difference?
I think that being on this journey has made me a better person and given my life a purpose. I feel that I can do so much to help others. I’ve become a better advocate for my kids and I am teaching others to be advocates for their kids. In our own way, we can all make a difference. I get to experience miracles every day in my life and I am very grateful for that.
- Learn more about autism in our Spanish-language resources
- Listen to our new podcast, Hablemos Autismo, created by and for the Hispanic community
- Connect with Autismo en mi Vida on Facebook, TikTok and Instagram