Washington Autism Alliance’s legislative intern, Lucy, is passionate about our mission because it is personal to her. As a sibling of an autistic brother, she and her family have experienced the systemic challenges firsthand.
My brother, Isaac, was born two years before me, and diagnosed when he was around 5-6, and I was 3-4.
Immediately after his diagnosis, my family had to make drastic career and lifestyle changes in order to have the time, attention, and resources to meet Isaac’s needs; my mother’s original plan to return to the workforce after my brother and I reached school age now had an added layer of complexity as she also now acted as a caretaker for Isaac. My father’s career in the military also required us to move several times throughout our childhood, requiring my parents to establish a network of care capable of supporting Isaac before uprooting and repeating the process just a few years later.
As a young child, I struggled to understand Isaac’s experience with autism, and I could also observe the stress that navigating insurance, ABA, speech therapy, and the special education services within the public school system caused my parents. As I got older, my ability to help assist in caring for Isaac improved—this certainly helped deepen our relationship, but it also left me feeling frustrated with myself because it often felt like I lacked the knowledge or capability of communicating with Isaac.
Isaac loves bowling, Red Robin (especially the Onion Ring Tower), The Goonies, driving down hills really fast, and concerts! We have a lot of the same interests, even if he cannot communicate about them in the same way I can. As a kid, I really enjoyed rock climbing, and Isaac did, too, but it always impressed me that he would climb barefoot because he preferred that to the pressure of climbing shoes.
One of my favorite memories is when we went to Hershey Park in Hershey, Pennsylvania (we both LOVE chocolate) — it was freezing cold, and we went on a ride together. While I was screaming from fear, he was laughing and having the time of his life. To this day, when the Olympia Lakefair rolls around every summer, he is very eager to ride the swings, and I always love to join, no matter how dizzy it makes me!
I am happy to be involved with WAA because I know from a personal level the challenges that many families face in seeking to ensure their family member’s autism does not inhibit them from living the most fulfilling life possible. My brother is a wonderful person, and I want every child with autism to similarly flourish into adulthood.
Having a sibling on the spectrum, and being raised in an environment where autism and neurodiversity more generally were frequent topics of discussion, provides a level of empathy and understanding that is otherwise unattainable. Everybody in my family has advocated on Isaac’s behalf in some form or another without even realizing—I suspect that many people could relate upon reflecting further!
I believe that if you are passionate about something, you have the responsibility to speak up about it—not for yourself, but for the sake of others who cannot, or for those whose voices are ignored. This is especially true in disability rights advocacy, where the most vulnerable often face significant barriers to advocating for themselves. As siblings, family members, and friends, it is our responsibility to play an active role in meeting the needs of our community.
We at the Washington Autism Alliance are always looking for more passionate individuals to join our advocacy efforts. For more information about how to make your voice heard, email g[email protected]