Straight from the Source - Carly N.
Posted on 03/27/18 in School by Milestones
As a speech-language pathologist in training, I recognize the importance of self-advocacy. As an Autistic* person and sister of another Autistic adult, I have seen firsthand how safety and happiness depend on it. I spent years watching my brother come home from school hurt, angry, and misunderstood. His self-advocacy, rather than being cherished and honed, was often ignored or even punished. The trauma he endured in these experiences, and my experiences learning to advocate for myself, while riddled with anxiety, have shaped my appreciation of the critical need to honor and promote self-advocacy.
My brother’s diagnostic process followed the usual timeline. My mother and the pediatrician noticed early developmental delays in areas of mobility and speech. He got his diagnosis by age 3 and was enrolled in early intervention. After school each day, I’d sit on the other side of the mirrored-window and watch various professionals work with him. My journey with autism has differed widely from the understood norm, but is not at all uncommon. In kindergarten, I was reading chapter books and already performing in the top of my class. My mother’s ongoing lament throughout my life was that I could be “so good at school, yet so difficult at home.” As it turns out, this holding-it-together-in-public-and-melting-down-at-home routine is common in people whose autism doesn’t present naturally. We have managed to appear “okay” when complete loss of control feels too unsafe. But doing so taxes our nervous systems heavily such that we pay for it later.
For most of my early life, it didn’t occur to anyone, myself included, that I might also be on the spectrum. At school, I was quiet, but quick to learn. At home, I was an unruly brat. My brother was probably the first to realize, though not consciously. We bonded with one another more deeply than with anyone else in this world. During family parties, we have always found where the other was hiding (or crying if we got too overwhelmed) and quietly kept each other company, an unspoken tradition of camaraderie. We would pick up each other’s stims and lift the mattress for each other to go under when we were struggling.
I first wondered if I might be Autistic around the age of 12, talking about how out of control and socially inept I felt. I was told this was normal for preteens. I pushed it out of my mind for another few years, and a part of me was happy to do so. I saw how often “success” for my brother looked like obedience, and the thought of people increasing their control over me and further limiting my ability to get my needs met terrified me. In school, I became an office aid so I could walk around the school during free periods and sit in the office with the secretary rather than in a crowded study hall room. I naturally gravitated toward friends who were either marginalized in some way themselves or who had “a fondness for quirky people,” as one of my high school best friends describes it. Years later, I rediscovered myself in my autism diagnosis. Finally, I had a community that could help me understand myself, and the world, more fully.
Often, my advocacy and that of others like me is squelched when it goes beyond our own basic needs (and even when it doesn’t). We are told that our ability to speak, or to attend mainstream school or hold a job (even when these occur with supports or are fluctuating abilities, as is often the case) makes us unable to understand what other Autistic people might be experiencing. My meltdowns were meltdowns long before I recognized them as such, and I can describe exactly what they feel like and what kind of support I need before, during, and after them to feel safe. Additionally, I recall life experiences that have enabled me to advocate for myself and for those around me, and I vividly recall experiences that set me back. I worry as I see those that set me back happening to others frequently, with similar results. Our lives may be different, but autism connects us all, just as it has connected my brother and me over the years.
There’s a whole community of Autistic adults out here. Some are verbal, others are not (check out Amy Sequenzia’s work if you’re not familiar!). We have information and perspectives that can help you. For more information, I strongly recommend looking into the Autistic Self Advocacy Network and Autism Women’s Network. Additionally, I’ll be talking more about supporting self-advocacy in all kinds of Autistic people in my presentation, Promoting Self-Advocacy Across the Lifespan, at the Milestones National Conference on Friday, June 15, 2018 at 11:15 AM. I hope you’ll be able to attend and join in the discussion!
*The author intentionally uses identity-first language as a reminder that neurodiversity is a valid form of diversity like others that are acceptable to refer to with identity-first language (e.g. brown-eyed girl, Hispanic person, etc.) and in support of Autistic culture. You can read more about that here.
Carly Nelson is a Speech Pathology and Audiology student, an individual on the spectrum, and a sibling of another individual on the spectrum. She is passionate about the need to foster self-advocacy as a pathway for learning, growth, and self-determination.