self-advocacy

Ask the Expert – Awareness to Action: Building a Strong Voice Through Self-Advocacy

My name is Sondra Williams, I am a wife, mother, grandmother, national speaker, and advocate for myself and others. Lastly, I am Autistic. Autism does not define me; it describes only a part of me.

During Autism Awareness Month, I pause and reset my thoughts as I begin to digest what awareness means to me in regards to autism. Awareness has been around for many years now, so you would think it would be profoundly understood by now. Yet, that is far from my truth.

There are so many voices with various messages from “Defeat” and/or “Cure Autism,” to highlighting neurodiversity and able-istic viewpoints. I hear the terms over and over of high functioning versus low functioning, adding label upon label to define this complex disability or as some say difference.  So, autism awareness becomes a huge question left unanswered; what should I believe and what camp of thinking do I support?

As an Autistic adult who travels to teach and speak, I meet many teens and young adults who simply struggle in regards to self-awareness and self-advocacy. Many have no clue outside of the diagnostic label what autism is and how it affects them.  If one does not know how something affects them or have the vocabulary around their disability, how can we expect them to become great advocates? We must empower their voice through knowledge and teach them the vocabulary around their disability.

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Straight from the Source – Carly Nelson

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.

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Monthly Milestones | November 2015

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Monthly Milestones | October 2015

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Monthly Milestones | January 2014

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