Embracing Autism: Moving Beyond Awareness
I have worked within the autism community for over 18 years. I have attended Autism Speaks events, donned my blue puzzle piece lapel pin for job interviews and professional events, donated money, joined the organizations, stood on a soapbox for person-first language, organized “Light It Up Blue” events, created bulletin boards and peer awareness events and even baked puzzle piece cookies for the teacher’s lounge. For nearly two decades, I have taken pride in advocating with passion and my best intentions for my autistic students, friends and peers. Still, it wasn’t until a recent conversation with fellow advocate and Mercyhurst alumni Ben VanHook that I stopped to wonder, “Were my actions enough or even appropriate? Where was I looking for information on how to best support the autistic community?” As I let those questions resonate, I reflected on the wise words of Maya Angelou, “Do the best you can until you know better. Then when you know better, do better.” Folks, the time to do better is now! We need to move beyond awareness and start embracing autism!
By Carla Wyrsch & Ben VanHook
Working towards a world where all autistic individuals can have access to the supports and services they need for equitable education, medical care, independent living, professional opportunities and are accepted and appreciated takes time. So, how can we “do better” for our autistic students, friends and family members? We (Ben and I) challenge you to read the suggestions below and choose at least one item to put into action this month.
The Origins of Autism Awareness
In order to do better, we need to understand the history behind autism awareness. More than 50 years have passed since the Autism Society of America (ASA) held the first National Autism Awareness Month. In those 50 years, the narrative on autism and how we approach it has changed. Over time, we have seen organizations switch from the messaging that autism was a “horrible disorder” that we needed to “cure” to the idea that neurodiversity is a gift that should be accepted and appreciated. We’ve seen the development and success of self-advocacy organizations and groups. Because of these groups and their efforts, organizations are now including autistic individuals on their boards and staff and creating resources for autistics by autistics. The most recent change occurred last year, suggesting that we shift our terminology from awareness to acceptance. Why is this change significant to the autistic community? Christopher Banks, CEO and president of the ASA, explained that “Awareness is knowing that somebody has autism; acceptance is when you include a person with autism in your activities. Help them to develop in that community and get that sense of connection to other people.” We have come a long way in 50 years; we need to use the momentum to keep doing better, there is still more change that needs to happen within the community.
Why Embracing Autism Requires More than Awareness
As Mr. Banks of the ASA mentioned, “awareness is knowing someone has autism.” So why do we need to move past “merely knowing” and the passiveness of awareness? For starters, you can be aware of something while not doing anything about it. Awareness campaigns alone rarely improve the lives of autistic people. In fact, they can lead to widespread dissemination of misinformation and outdated perspectives because sometimes they neglect to include the voice of the neurodiverse community. While it is important to stay up-to-date with current medical information and trends, we need to focus equally on opening the dialogue with the autistic community and changing the way we think about autism. I would challenge you to become aware of more than just the label. Look at a person’s strengths and needs and what changes we can make to create equitable access to our communities. Doing this will encourage conversations about important issues such as ableism, symbolism and the language we should use when discussing and embracing autism.
According to Ben, “acceptance is helping the [autistic] community survive, while appreciation is helping the community thrive,” making appreciation an essential component. We can help autistics thrive by addressing ableism, the discrimination against people with disabilities, in our communities, building on acceptance and placing a focus not only on acknowledging individual differences but also on realizing the value they have. To Ben, autism appreciation is the neurotypical community acting as a guide or roadmap but allowing the autistic individual to “steer the ship” and make decisions along the way. The neurotypical and neurodiverse/autistic communities cannot live independently of one another. We must use each other’s strengths and talents to not only make all feel welcome but to provide the opportunity for all to contribute and thrive!
So, what is the best way to move towards acceptance and appreciation? Ben suggests communication and advocacy; things he embodies in his day-to-day life and his workplace. “The more businesses, schools, families, friends and the community learn about autism from an autistic perspective, the more change we can create.” We need to start communicating with each other, listening more, and realize that acceptance is more than accepting the existence of autism, it is acknowledging that the true experts on autism are autistic people. When we do this, we will empower our autistic friends, students, family, and even strangers as well as return the narrative of autism in mainstream media to the autistic community. We can ensure autism acceptance and appreciation are more than just buzzwords. Regardless of how you choose to work on embracing autism, to truly make a difference Ben says “we mustn’t be satisfied with the bare minimum and should strive for appreciation of autism rather than mere awareness and acceptance.”
The Neurodiversity Paradigm Shift
Another way to truly of embracing autism appreciation and acceptance is to understand what neurodiversity is and why it is important.
Despite our best intentions, we understand and advocate for autism from the traditional medical model. Autism is viewed as a condition or disorder that is characterized by deficits in social interaction, communication, sensory processing and restrictive and repetitive behaviors. In the medical paradigm, we are taught to believe there is a correct way, a typical/normal way for us to develop neurologically. If a person’s brain doesn’t work in this manner, we look for ways to “fix it”.
So, what exactly is neurodiversity? According to Nicole Baumer, MD, MEd and Julia Frueh, MD neurodiversity is “the idea that people experience and interact with the world around them in many different ways; there is no one ‘right’ way of thinking, learning and behaving, and differences are not viewed as deficits.” While the neurodiversity movement is relatively new, its impact is powerful, creating waves in the autism community.
The neurodiversity movement has helped us look at an autistic individual as a whole person who interacts with the world and identify and remove barriers. Specifically, it has shifted the perception of autism, appreciating the individual’s strengths and what they can offer to the community.
Embracing Autism Together: How We Can Do Better
“Nothing about us without us.” This famous slogan has been used to remind us that when policies are being made, the people affected by those policies should have full and direct participation. The narrative on autism should be driven by the autistic community. The list below was developed with that mindset.
- Address ableism. Begin by addressing ableist attitudes and habits. Talk with your autistic students, friends, family members, or fellow employees and see what changes we can make to the environment to better accommodate them.
- Don’t make assumptions. Cassandra Crossman from In the Loop About Neurodiversity suggests, “To support and properly represent autistic people, ask them first what language, symbols, and terminology they prefer.” When I asked Ben his preference, he said, “I prefer to be called autistic. I believe my autism is so deeply ingrained in who I am. It is my identity and I never wish to distance myself from who I am. I’m autistic is like saying I’m Chinese or I’m African-American, or I’m Jewish. It’s my identity, it’s who I am.”
- Engage with autistics and the autistic community. There is a famous quote from Dr. Stephen Shore, “If you’ve met one person with autism, you’ve met one person with autism.” Just because you may know one person with autism or teach a room full of autistic students, each person is an individual and has a unique gift to offer. As Ben suggested earlier, to co-exist successfully we need to build bridges between the neurotypical and neurodiverse communities through listening and communication. He reminds us to listen to our autistic friends and family and anyone else in the community without judgment.
- Focus on changing yourself, not the autistic individual. We need to embrace neurodiversity and view autism from a social model rather than a medical model. Dr. Barry Prizant says,“to help autistic individuals, we don’t need to “fix” them. We need to understand them and then change ourselves- our beliefs, attitudes, and actions.” When we change ourselves, we not only can support the autistic community, but we can empower them as well.
- Educate yourself so you can educate others. Ben suggests focusing on resources that feature autistic presenters or writers, or organizations that positively support the autism community. One of our go-to organizations when it comes to embracing autism is the Organization for Autism Research. OAR has served the informational needs of parents and teachers in their efforts to support their autistic children and students for more than 20 years. Executive Director of OAR, Michael Maloney explains how OAR continues to support the autistic community and those that support it, “we have begun to more directly include self-advocates as we introduced the Hire Autism program and developed the Sex Ed Guide for Self-Advocates. We’re just scratching the surface in terms of developing high-impact resources for autistic individuals.”
- Offer support through advocacy. The best way to support and advocate for an autistic individual is to first listen to what they want. This means offering support by listening to and learning from them and then using that information to advocate appropriately.
- Include the narratives of both autistic children and adults. Special education law, like autism awareness, has come a long way and much of the dialogue surrounding autism is focused on early intervention and school-aged children. But we must also remember the autistic community includes adults and they have a narrative that needs to be heard as well.
- Employment must be part of the conversation. According to Ben, appreciation also should focus on employment. His vision for employment would eliminate hiring quotas through the use of a competency-hiring system rather than a spoken interview system. Ben explains that “through competency-hiring, we get rid of the ableism present in the hiring process by eliminating anxiety-provoking questioning and focusing towards a more ‘show me what you can do, don’t tell me’ model, in which skills and attributes are highlighted rather than one’s identity.” The focus on employment is important to this autistic community because when the neurotypical community is aware of and incorporates strategies such as competency-based systems during the interview process, it levels the playing field. Ben believes that through conversations about employment, we can shift the focus from token-based hiring to meaningful employment based on ability.
Carla’s Takeaways on Embracing Autism
Writing this piece was extremely difficult for me and I feel fortunate that Ben agreed to provide an autistic perspective. I felt that early in my advocacy journey I did so much wrong even though I thought I was doing so much right to support the community I loved. Then I saw a quote from Temple Grandin, “The worst thing you can do is nothing.” I realized that I did what I knew was right at the time. But time is fluid and as the times changed, the needs of the community changed, and now I can reevaluate and “do better.”
If you are out there supporting your autistic friend, students, family member or assisting a stranger you met at the grocery store, keep on doing what you are doing. I will however challenge you, to continue to seek out information and strive to do better. The simplest way to do better is by truly listening to the autistic community. Ben’s vision for embracing autism is a world where autism appreciation month doesn’t exist; a world in which appreciation is so embedded in our culture that a day of conscious awareness is no more than a footnote. This is what we all should be striving for. Understanding and including the neurodiverse community so completely, that conversations happen fluidly in our everyday lives not just for one month a year. This is my new action item and I encourage you to make it yours as well! It is only through working together that real progress can be made.
About the Authors
Carla Wyrsch is a military spouse, mother, special educator, graduate of William and Mary Law School’s Education and Advocacy Clinic, and a Master IEP Coach®. She has devoted her career to educating and advocating for children with disABILITIES. Her experience spans a variety of settings, including residential treatment facilities, military bases, public schools, and the Cleveland Clinic Children’s Lerner School for Autism. In addition to her work with children, she enjoys providing coaching sessions to both professionals and parents as well as volunteering for the Organization for Autism Research and Partners in PROMISE.
Ben is an autistic graduate student studying public policy at George Mason University with an emphasis on education policy. He received his bachelor’s degree with a double-major in political science and psychology at Mercyhurst University. He is currently employed at the Organization for Autism Research as a Programs and Outreach Associate, having previously worked for MASI, George Mason’s autism initiative. He has written several articles covering topics ranging from autism appreciation to disclosure to education and has spoken at a few national panels discussing autism inclusion in the workforce and mental health and autism.