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Self-Advocate!

The Autism community of late has been reflecting on the importance of self-advocacy. The Autism Self-Advocacy Network has gained popularity due to its belief in policy developed by #ActuallyAutistic voices; meanwhile, Autism Speaks has come under scrutiny for doing the opposite: hiding Autism, rather than prioritizing self-acceptance and self-advocacy. I wanted to share my thoughts on this important topic.


Self-advocacy begins with accepting your Autism or disability. It is not something to be ashamed of, or in Autism terms, to mask. It is best to be your authentic self and focus on what makes you happy. Unmasking is a liberating process (read more about this in my blog “Unmasking Autism”). But with unmasking comes challenges. That is where self-advocacy comes in. 


Self-advocacy requires coming to terms with two facts: accommodations are necessary for inclusion and to get these accommodations, it is up to the individual to advocate for themselves. Accommodations are sometimes portrayed as “giving in” to the disability – but that isn’t the case. Rather, accommodations are about understanding the disability. A disability does change how you interact with the world; but, these interactions can be meaningful. 


As a summer camp counselor, I needed accommodations. I have a condition where I sweat a lot, and sweat is one of my sensory triggers – therefore, I needed to plan for a way to work through it. The accommodation I advocated for was a mid-day break. This allowed me to cool down and be productive when I worked with my campers in the afternoon. My sweat challenge eventually turned into an asset. I found myself being one of the few counselors not just willing to swim, but enthusiastic about the activity. I went into the pool every day. Through this experience, I developed meaningful relationships with my campers – specifically, one camper who was having sensory issues getting into the pool. This camper worked with me on getting more comfortable getting into the pool. Swimming eventually became a favorite part of his day. My sensory challenge was an opportunity that allowed me to help him through his challenge – my accommodations led to helping others.


This is the essence of self-advocacy. While at a young age, Autistic (and other neurodiverse) individuals will need guidance and parental support when it comes to advocating for accommodations, they should over time develop self-advocacy skills. These skills will not only help the individual request accommodations but also allow them to communicate with friends and family about their challenges and even share their stories with others (like I am doing right now!). 


Developing these skills takes time and occurs through the involvement and effort of many people. It takes the patience of the parent(s), the innovative ideas of educators, the support of other people in the community such as friends and classmates, and most importantly, the determination of the individual. My self-advocacy skills were a result of all of these forces coming together. It is only through the work of these forces that self-advocacy is successful.  


My self-advocacy is an example of how this model can work.


My self-advocacy journey began with my aunts. Educators by trade, and both with experience in special education, noticed my developmental differences and encouraged my parents to have me evaluated by a developmental pediatrician. After I was diagnosed as Autistic, they turned their attention to helping my parents find schools and support appropriate for me. I wasn’t old enough to say what school was right for me, but even at a young age, my mom, dad, and aunts explained how important it was for me to identify how I was feeling.  They encouraged me to practice this in connection with sensory triggers. 


My self-advocacy improved as I aged: I was better equipped to explain how I was thinking and feeling about different situations. Eventually, all of this kicked into high gear in my middle school years. Middle school was not a good time for me socially, and looking back, on paper, when it came to goals I set for myself, I did not accomplish as much as I did in my elementary and high school years. But, I believe those difficult years taught me important lessons and built me into who I am today.  


At Solomon Schechter Day School of Bergen County, Ilana Kustanowitz, the school psychologist, worked with me through my challenges surrounding anxiety. Within a few years, I went from being completely flustered by a trigger to handling most panic attacks on my own. 


Then, at, Ramah Poconos which I won’t fully talk about here –  I realized that it wasn’t the right place for me. And that realization, and futile attempts to make it work, led me to learn where to draw the red line for myself. I learned that not every challenge is something I need to conquer. Knowing where to draw the red line is important to learn. If I hadn’t learned this I would have spent two more unhappy summers there. Instead, I tried new things. I did a year of ETGAR36 and then found my true summer passion, working as a counselor at Ramah Nyack.


So what does my self-advocacy look like in practice? I’ll take the example of my Boston Tiyul in April for this. Preparing is key. Preparing is most of the battle; it always begins with knowing my schedule so I can bring what I need to get through the tough moments and choose where to spend my energy. It also helps with my anxiety about unpredictability – I know what is going to happen next and what activities are likely to be changed.  When I prepared for Boston, I thought the most important thing for me to bring was my earplugs. These earplugs help in loud and crowded environments and I could tell from the schedule that I should get them. 


The first day goes mostly according to plan until the end when we get to Fenway Park for a private and informative tour. I did not expect this to be loud, but, with 80 kids in a tight space, it is. That is where my adaptability came in. I asked one of the chaperones for permission to stand at the end of the line. Next, I took out those earplugs in my backpack – they were intended for the next day, but having them for emergencies was helpful. Using the earplugs, I managed the tour and made some memories. Two photos on my professional development slideshow are from that tour! 


Later, I was still run down from some of the sensory overload. It wasn't crippling but I was feeling disoriented. That is where another tool came in. You see, I was experiencing a bout of depersonalization (which I explained in Sensory Overload pt. 2). Using a strategy that one of my therapists gave me, I sat down and began reconnecting with my senses. Taking this break was necessary and rejuvenating because it was just day one of my trip. And while this may sound daunting, for me, this is just an everyday part of being Autistic. And it is rewarding! 


So what? Well, self-advocacy is a big step for Autistic people. Autistics are not all children. Autism doesn’t go away as you get older, it is part of who we are! For years, the diagnosis was rare and relegated to children. But, with diagnoses improving over the past decade, more and more people are getting diagnosed. Soon, a majority of Autistics will be adults and they will expect a work environment that allows accommodations and encourages self-advocacy. Creating such an environment is not just about making an inclusive environment, it is a competitive and financially intelligent move to make. Autistic and neurodiverse individuals are dedicated, kind, and interested in success. My job as a counselor at Ramah Nyack is an example of this. I believe the creativity and adaptability skills I have had to build as a neurodiverse individual have made me a better counselor. Not to brag, but I think I am a valuable employee at Ramah Nyack because of the unique perspective I bring to my bunk and the camp generally. I am excited to see what new ideas and collaborations I will bring to the table this upcoming summer. 


My other takeaway is that self-advocacy is not limited to the neurodiversity or disability realms. Everyone can benefit from these skills. We all have challenges. What makes life fulfilling is working through them and building communities of love, respect, and innovation. 

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