Jackson Skane is a youth ambassador to Northeast Arc’s Board of Directors and an autism advocate. In the latest entry in this blog series, Jackson and his sister Taylor write about their advocacy journeys and future career goals.
I am so excited for this blog post because not only will I be talking about my future career goal and journey to being an Autism self-advocate, but my sister co-wrote it with me. I am so lucky to have the best sister in the world named Taylor. Since I was little, Taylor has been there for me every step of the journey. Not only has she inspired me to be open about my autism, but she challenges me to be the best version of me. I can’t wait to let Taylor share her journey as well and hear how she and I started our organization, Skane Train Voices.
Tufts Medical Center
The moment my perspective of my life changed. It was April of 2015 and I was having one of my annual visits with my developmental doctor at Tufts Medical Center in Boston. I was 9 years old at this time and I believed I was doing a lot better than I had in Second Grade after being bullied. In school, I finally had a new group of four friends who made me feel wanted and they were all neurotypical. I never felt judged by these friends and they were a great addition to my other two friends I made in kindergarten.
However, at this appointment, I remember feeling defeated. As much as I thought I was improving academically and socially, my doctor disagreed. She was telling my parents how much I was struggling and what I was doing poorly right in front of me. This made me feel destroyed because my doctor spoke as if I couldn’t hear what she was saying, but I too have feelings and understood her words. I can remember holding tears back because each of her negative comments felt like daggers.
Finally, when I came out of my appointment with my parents, I said to them “I know there is something wrong with me, I know I am different, please just tell me the truth.” Both of my parents looked nervously at each other and then they said “Jackson, you have autism.” That word “autism” meant something completely different in that moment than it does today.
I felt broken at that moment because I didn’t know what autism meant. I was worried it was a disease and all I could do was start sobbing. Luckily my parents saw me and started to explain that autism is something I was born with and while it has given me tough challenges, it has also given me so many gifts. In that moment, my emotions went from sad to joyous. I felt so much love in that small moment that I knew I did not need to worry about my life. I even started to understand why I acted certain ways and why we always wore blue on a certain day each year, which was Autism Awareness Day on April 2.
The Call with Taylor
As me and my parents were at a restaurant after my doctor’s appointment, I told them I wanted to call Taylor and tell her that I have autism. I was very nervous to tell Taylor because I did not want her to view me in a different way. Taylor and I had always been super close but I worried that my autism would make her feel embarrassed to be around me.
When I called Taylor, I said “Taylor, I have autism and it means that I struggle with social interactions, behavior, and communication.” Once my parents explained to Taylor more about autism, she said without any hesitation “Okay, so what, it makes you even more unique than the regular kids around you.” At that moment, I felt acceptance for one of the first times in my life. Taylor, who had no idea about my autism, was immediately willing to learn more about autism and believed my autism made me more unique and gave me special talents.
Taylor was not scared or embarrassed of me like I worried she would be. Taylor was an advocate from the minute I told her that I had autism. To me, it meant more coming from Taylor than my parents because she was another kid and I could relate more to her. Therefore, when Taylor accepted me for me, I knew that I could tell my friends at school without being judged.
Presenting to My Fifth Grade Class
When I got to fifth grade, I felt like the king of the world. I started to interact with more of my classmates because they were more open to speaking with me. As long as it took, I finally started to feel more accepted by my peers. Even though I still got the occasional “Shut up Jackson” or “You’re so annoying Jackson” I did not let it bother me or change who I was.
In April of that year, we had a guest speaker talk to our grade about Autism Awareness. I remember I was looking forward to this because I wanted my peers to understand what I go through on a daily basis and to accept me for that. Unfortunately, as much as the presenter tried to talk about Autism Awareness, the presentation did not feel authentic because it was not someone who had autism themself or a family member with autism.
Then, when my next session with the school social worker took place, she asked me what I thought of the presenter. I then told her that I felt like the presentation was good, but not very accurate on the experience of autism. I told her that I wish the presenter could have been someone with autism. The social worker then said “Jackson, I totally agree with you and I was wondering if you would want to talk about it with your grade?” I was definitely startled by that question because I had not been super open about my autism, but I knew that I wanted to make an impact on the students and give them an accurate depiction of what autism can be like.
A couple of weeks later, the entire fifth grade class of 60 kids was sitting in the library waiting for me to come talk about my autism. Luckily, I had my parents there as support and as well as my sister Taylor. I was about to face my fears and talk about my autism to my peers, with the help of Taylor, who was talking about being a sibling to someone with autism, and the librarian, who was talking about being a parent to someone with autism.
When I entered that room, I felt everyone’s eyes looking at me and they seemed confused about what was going on. I think the students initially found it weird to see me speaking to all of them in a presentation setting because it is normally adults presenting. Finally, I told the students that I have autism and I told them how it gives me certain struggles, but it also gives me strengths. While speaking, you could see the shock on everyone’s face as they did not expect to hear that I have autism.
After me, Taylor, and the librarian presented, and we answered questions and then resumed our normal schedule. One thing that stuck out was that someone who had bullied me came up to me and said “Jackson, I wouldn’t have been mean to you if I knew you had autism.” This comment is something that sticks with me everyday because it is one that makes me furious. How can someone think that it is okay to be mean to someone unless they have a disability? At that moment, I explained to the kid that you should never be mean to anyone, regardless if they have a disability or not. Because of that, I remember having a gut feeling telling me “Jackson, this is not the last time you are going to share your autism journey with an audience.”
Keynote Speaker at the Rock the Spectrum Gala
As a sophomore in high school, I was asked by Rock The Spectrum (RTS), a non-profit organization supporting individuals with autism and others with disabilities to present at their second annual gala. I was super excited as the last time I spoke about my story with an audience was in fifth grade. On the night of the event, I remember I was starting to get nervous on the drive over, but ultimately I was getting the hype I needed from Taylor.
When I presented, everyone was so attentive and the room was silent. I was impressed that a high school student was able to get the attention of adults, and many who did not know who I was. The applause I got when I finished made me feel like I was on top of the world. I had many parents come up to me and tell me about their children with autism and how I have given them hope for the future of their children. And then Craig Welton, the Chief Development Officer of Northeast Arc at the time came up to me. Craig was so generous and he explained to me that he thought I could make a huge difference at the Northeast Arc and help donors feel connected to my story. Little did I know, that night and meeting Craig would change my life.
Jackson, the Autism Advocate
After the RTS Gala, I got the chance to become more involved with the Northeast Arc, specifically as an autism advocate. I was eager to do this because I always wanted the chance to give back to the Northeast Arc after all they had done for me and my family. I was even more excited to get to meet the people behind the amazing organization as well as other neurodiverse kids and adults.
Once I got more and more time as an advocate, I was invited to be considered for the Northeast Arc Board of Directors as their first Youth Advocate. I remember getting to meet with Julie Cummings multiple times to understand more about what my position would be and if I would be a fit for the Board. Around a month later, Julie let me know that I was voted in by the Board of Directors to join as a Youth Advocate. I still to this day am so grateful for Julie as she helped me transition into the Board and answered any questions and concerns I had. Even now, I am still a Youth Advocate on the Northeast Arc Board of Directors where I help provide the perspective of someone being supported by the Northeast Arc and how we can shape the future of the organization.
Another reason I have loved being a part of the Northeast Arc is because it has helped me gain more opportunities to advocate for people with disabilities. I was able to be on the Community Experts Team at the Peter and Elizabeth Tower Foundation for two years, go through the Northeast Arc’s first Ambassador Leadership Training Program, speak at Autism support groups through the Northeast Arc’s Autism Support Center, become a co-teacher and host family for The Arc of Massachusetts, and recently starting my own organization with Taylor called Skane Train Voices.
What Do I See for My Future?
This is a question I have thought about so many times and is one I don’t quite know the answer to. I am someone that definitely wants to try everything, but my number one career goal is to become a Director of Special Education for a school district. Growing up, I have seen so much in the educational environment and how it has affected students with disabilities. I have had great things come out of it, but, I have also had bad things come out of it.
For many students in Special Education, there is a lack of inclusion between the neurotypical classroom and the neurodiverse classroom. I have witnessed that struggle throughout my entire education and because of that, I want to bring those experiences into action. As someone with a disability, I believe it is important for the people making the decisions in Special Education to be the people who have been through it themselves.
I want to not only be a Director of Special Education, but I want to be a person that families can always come to when they have concerns with their children or to talk about what changes they would like to see. Inclusion is something every child deserves and children should not be left out of certain activities or fun due to their neurodiversity. Therefore, I know in my role as a Director of Special Education that my number one priority will be creating more inclusive classrooms in schools for students with and without disabilities.
Who is Taylor and What is Her Journey to Advocacy?
Hello! I am so excited to be part of this blog. My name is Taylor Skane, and I’m currently a senior at Essex North Shore Agricultural and Technical School. It’s hard to believe how fast time has flown, but I’m so excited for what’s next. This fall, I’ll be heading to Endicott College to study Business and Entrepreneurship. I’ve always had big dreams, and I can’t wait to turn my passion for creativity and leadership into something real. But beyond school and future plans, one of the most important parts of who I am is being Jackson’s sister.
From the very beginning of his journey, I’ve been right by Jackson’s side, cheering him on, supporting him, and learning from him every step of the way. Being his younger sister isn’t just a role I was given, it’s one of the greatest honors of my life. I still remember the phone call like it was yesterday. He told me he had autism, and I could hear his voice cracking as he tried to get the words out. He was crying, and I could tell how overwhelmed he felt at that moment. But honestly, I didn’t understand why he was so upset. To me, it didn’t change a thing. If anything, it made him even more special! Autism didn’t define him, it just meant he saw the world a little differently, and that uniqueness has always been one of my favorite things about him.
My advocacy journey really began back when Jackson was in fifth grade. That was the first time we had ever spoken to his class about him having autism, and I’ll never forget how important it felt to be there. I felt like I needed to join him during this speech, not only to support Jackson but also to talk about what it’s like to be a sibling or friend of someone with autism. It’s not always easy. Growing up, there were so many moments where I had to sit alone in a room while therapists worked one-on-one with Jackson and my parents. At the time, it was hard to understand why I was being left out so often, but looking back now, I realize how necessary those moments were for Jackson’s growth.
Being a friend to someone with autism can also come with challenges. You have to learn how to adjust, not just to what they need, but also to what they don’t need from you. Sometimes, the best way to support them is to step back and just let them be. That’s part of what pushed me into advocacy. Instead of reacting with anger when someone would bully Jackson on the playground, I started to realize that most of these kids just didn’t understand. They didn’t know what autism was or what it meant. So rather than yelling or fighting back, I decided I wanted to inform them. I wanted to give them the chance to learn and to grow, just like Jackson has, and just like I have and continue to through being his sister.
After that first speech to Jackson’s class, something in me shifted. I walked away realizing just how much I truly loved growing up with him. Sure, there were bumps along the way, but being his sister has been one of the greatest gifts in my life. I loved learning about him, about his disability, and about how those differences made him who he is, unique, strong, and incredibly special. That experience lit a spark in me, and it’s what inspired me to start volunteering with different organizations that support individuals with disabilities.
Since seventh grade, I have been volunteering for organizations, specifically Special Olympics and the Northeast Arc. I have met countless individuals of all ages and abilities, each one teaching me something new about inclusion, resilience, and joy. One of the most meaningful parts of my advocacy work has been through the Dancer Within program at my dance studio, North Shore Dance Academy. I’ve been volunteering there for five years now, working weekly with girls of all ages who have a wide range of intellectual and physical disabilities. Every week for an hour and a half, we dance, move, and connect. But it’s not just about the physical activity, it’s also about helping them build communication skills, form healthy friendships, and feeling confident in who they are. One thing I always say is these girls will never understand how impactful working with them is to me. Being a part of their journey has shaped me just as much as it has shaped them, and I’m so grateful for every moment.
As I continued volunteering and gaining more hands-on experience with people of all different abilities, I started to realize just how much I had learned, not just about disabilities, but about myself. I learned how to adapt, how to listen, and how to truly show up for the disability community in a meaningful way. But the more I immersed myself in this world, the more I began to notice how many people around me still didn’t understand. Whether it was classmates, young kids, teachers, or even other parents, there was often a lack of awareness about what disabilities really are and how they can shape someone’s behavior or communication style. That truly was frustrating to me and hard to process, but it also motivated me. I knew how important it was to understand and support every person for who they are, whether they have a disability or not. I thought about how Jackson has always been brave enough to advocate for himself, and I felt called to do the same, not only for him, but for everyone who shares a similar story. I realized that so many families go through what mine has, and so many siblings experience what I did. Maybe feeling a little separated at times, having to grow up faster, and learning to be an advocate before fully understanding what that even meant. I wanted others to understand that, and that’s what led me to the next chapter of my journey, creating Skane Train Voices with Jackson.
Developing Skane Train Voices
In April 2024, something truly meaningful happened. Jackson and I officially launched Skane Train Voices, a project that had been growing in our hearts and minds since the beginning of the year. What started as a few conversations between each other and our parents, turned into something much bigger.
Both Jackson and I have long been involved in disability advocacy, but in very different ways that perfectly complement each other. Jackson brings his own personal experiences navigating the world as someone on the autism spectrum, using his voice to champion self-advocacy and inclusion. Meanwhile, I’ve been actively volunteering with various disability organizations for years, learning firsthand how powerful community support and education can be. Despite our different paths, we both noticed the same thing, there’s a real gap when it comes to how disabilities are talked about with children and school systems.
Even though disabilities are being diagnosed and understood more than ever, many young kids still grow up without a basic awareness of what it means to live with one. There’s still judgment. There’s still a misunderstanding. There’s still silence. And we wanted to take a step forward and change that.
So we created Skane Train Voices, not just to share our own stories, but to start real conversations. Our mission is to shine a light on what we like to call “different abilities,” and to help people of all ages, especially kids, see disabilities not as a weakness, but as something that can actually be a source of strength, uniqueness, brilliance, and overall, something to be proud of. We believe that no one should ever feel like they have to hide who they are or be ashamed of how they think, move, or learn differently. Differences are worth celebrating, not hiding.
Since we launched Skane Train Voices, we’ve had the chance to visit so many elementary schools. During these visits, we’ve shared our stories, listened to the kids, and encouraged them to open up about their own experiences. One of the most rewarding parts has been watching their faces light up with curiosity and empathy when we talk about inclusion and understanding. What started as just speaking to elementary school students has turned into something even bigger. I am beyond excited to say that we now speak to students from kindergarten through 12th grade, and we’ve even had the chance to train student mentors and school staff.
The feedback we’ve received has been incredible. Teachers and staff have told us how impactful our presentations have been, explaining how it has been their favorite presentation they have listened to in years. And the most powerful moment for me is during our Q&A’s that we do after every presentation, students of all ages come up to us, full of courage, asking us to announce to their school or class that they have a disability. These moments are what truly fuels me to keep going, and shows me that I am achieving many of my life goals. Through Skane Train Voices, we’re not just raising awareness, we’re helping to plant seeds of pride, resilience, and self-love in our generation, and ones to come. That is the part I’m most excited and proud of, seeing kids embrace who they are and recognize their differences as super powers.
Taylor’s Future Career Path
Volunteering and creating Skane Train Voices has truly shaped my path, and it’s what led me to pursue business and entrepreneurship at Endicott College this fall. The more I worked within the disability community and saw the impact Skane Train Voices was having, the more I realized that combining my passion for advocacy with business knowledge could help me make a bigger difference. Something that has also shaped my career was joining DECA last year where I created a company called Embrace My Movement, which offered accessible dance shoes and equipment for dancers with disabilities. Although it wasn’t a real business, the experience showed me that I could create a community and a company that helps individuals with disabilities. It made me realize that my true passion lies in building something that empowers people and promotes inclusion, whether that’s through continuing Skane Train Voices or potentially launching another company. At Endicott, I am excited to continue my volunteer work with the Northeast Arc. I plan to continue growing Skane Train Voices and possibly start another venture aimed at supporting individuals with disabilities. I’m excited to take the skills I’ll gain from my studies and use them to build something meaningful that makes a lasting impact in the community.
Thank You!
I am so appreciative to all of you for reading my blog for the past month. I have learned so much through writing each post and each one has helped me come to terms with multiple aspects of my journey. I am even more grateful to Taylor for co-writing this blog post because many of you will learn or relate to what it is like to be a sibling to someone with a disability.
I hope you all can understand how much of an impact you can make in the disability community if you all are able to learn and adapt to the lives of those with neurodiversity. There is no time that has been more important to do this than now. Thankfully, we can make a major difference in the world if we use our voices to advocate for good instead of holding back. As usual, please feel free to email me at jacksonskane@gmail.com with any questions regarding the article or anything in general after the blog series ends.
Photo Courtesy: Danvers Public Schools