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 Autism” 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 regarding 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.
So, how do we begin to truly be empowered as persons living with autism and to effectively use our voices to express the varying natures of our self-identities? How can we advocate for needs and wants if we have not been informed of who we are as people with autism? We need to make autism awareness more relevant to the people who are living with autism.
- We must empower voices within our community at younger ages.
- We must not lump all of our complex expressions as a whole for all; we are all unique and vastly different.
- We must teach what autism is and is not in regards to each individual.
- We must be honest and not sugar-coat our strengths and/or challenges.
- We must teach the vocabulary around the disability.
- We should develop “think-tanks” to build skills and capacity for advocacy within a system.
- We must teach what is self-advocacy verses advocacy.
- We must let individuals live and feel the power behind their voice regarding self-advocacy.
- We must support and teach how to decode social differences and understanding.
- We must teach to not assume intent without seeking clarity among others.
- We must focus on the gifts, talents, interests and build skills within those various areas of strengths toward career paths.
- We as a community must be inclusive and provide opportunities to empower group advocacy and leadership positions.
- We must be inclusive of the whole spectrum in our voice and not just the expression of autism we live with.
Most importantly, we need to provide many opportunities and insight to young advocates through mentorship among successful adults living with autism. One of the most powerful tools for young persons of autism is to feel they have a future and direction. We must encourage knowledge and participation within conference venues.
Building capacity for knowledge builds stronger self-advocates. Let’s change awareness tones and move toward action.
Sondra Williams is a self-advocate, professional speaker, and past Milestones keynote. As an advocate for changes regarding disability, Sondra’s focus is on developmental disabilities. She has been appointed by the governor of Ohio to serve on the Ohio Autism Task Force, has served as a board member on the Autism Society of Ohio, the Ohio Center for Autism and Low Incidence, and also was appointed as a parent advocate trainee under LEND at Ohio State University.