What comes to mind when you hear the word “autism?” Perhaps you envision your elementary classmate who would always plug his ears; or a video on YouTube of the screaming toddler; or perhaps even Dr. Shaun Murphy from the hit TV show “The Good Doctor” Autism. Our perception of autism has been in constant development and transformation for the past 70 years (Spectrum News). The current trend for advocacy is either promoting Autism Awareness or Autism Acceptance; both of which have implications on autistic children and adults.
I have the highest honor of being the big sister of an adult with autism. My brother Lincoln was diagnosed with autism in 2002. I was 3 years old at the time, giving me 18 years to passionately witness, advocate, and love someone with autism.I have seen and participated in the positive and negative implications of both Autism Awareness and Acceptance, and I have come to realize the importance that both of these pathways of advocacy have for the autistic community. As I am writing this article, I do not intend to be a voice for my brother or the autistic community. Instead, I intend to write on my experience growing up with someone whom I love so much; I intend to write what it’s like being an outsider and an ally in the world of adults with disabilities; and I intend to write on how we actively need to be changing our perspective of autism to make their world a more loving and accepting place.
While autism is becoming more and more prominent in our culture, many Americans are still unfamiliar with what it means to be diagnosed with ASD (Autism Spectrum Disorder). Autism Awareness focuses on facts, statistics, potential challenges individuals and families may face, how to identify someone with autism, and finding a cure for autism. Autism is part neurological, developmental disorder, meaning there is no “autism look,” making it hard to identify someone with autism if you do not know the characteristics (National Institute of Neurological Disorders and Stroke). Spreading awareness of what autism is can help with early diagnosis, treatments, and helping others understand how people with autism behave. The main voices behind autism awareness are parents, teachers, and researchers. They explain what autism is from a scientific and behavioral level, and speak for the autistic community.
The issue that is embedded within autism awareness is whom it benefits; because the voices of awareness are from parents, teachers, and psychologists, the full story is never told. There are countless videos of 5-year-olds having tantrums, posted by parents, with the intent to show the world how difficult it is to raise an autistic child. Not only does this belittle and dehumanize the child in the video, but it also acts as a vesicle to how all people with autism behave, regardless of age or severity. There is a fine line between teaching others what autism is, versus exploiting both children and adults in their worst times.
Being the big sister, I also felt like it was my right and my duty to protect Lincoln from ignorance and disrespect. So I would educate my classmates, strangers, and even extended family members what it was like to have autism and how to be more respectful. My family and I also used autism awareness to help diagnose my cousin with autism at a young age. He was able to get early intervention treatment and is now able to communicate more now than ever before. I would give anything just to be able to have a conversation with my brother.
Acceptance is a term we are familiar with in today’s culture, but what does it mean to the autistic community? Autism Acceptance Day was created by autistic adults and allies to correct the negative images of autism that Autism Awareness may unintentionally spread within the media and our culture. Autism Acceptance focuses on neurodiversity, supports and services instead of early intervention treatments, and embracing autism as identity instead of “fixing” it (Autism Self Advocacy Network). This does not mean that there are not hardships that come with autism, but Autism Acceptance has changed the narrative from changing autism to live in the world, to changing the world to be autism-friendly. According to Kassiane S., “Acceptance of autistic people, like acceptance of pretty much all people, involves moving past surface impressions. It involves trying to understand us, trying to know who we are, not just what our operating system is.” (Autism Self Advocacy Network).
This issue with Autism Acceptance, is that it only expands so far. According to a study done on autism and acceptance, many participants feel they must “mask” or “camouflage” because they are not accepted for being autistic. One participant said, “I mask so well that I am accepted, but not for being autistic.” (Autism and Mental Health Survey) It is challenging for people with autism to feel accepted for who they are when the rest of the world is urging them to change. According to Robert Naseef, Ph.D, “The road to acceptance routinely starts with some level of denial. Our biggest problem is that we don’t want any problems, and we think we would be happy without them… We start out as individuals and as a society denying a problem exists or when we do acknowledge a problem, we often deny how serious it may be.” (Autism Society) The truth is, there are challenges that come with autism. The world was not made for people with autism; it was made for neurotypical people and we expect everyone to comply. By denying any problems with autism or the world accepting autism, we deny people with autism the resources they may need to function in the world.
Acceptance was not a term I was familiar with until Lincoln was an adult. I started to notice more adults with autism advocating for themselves instead of their parents and peers. I saw autistic adults fight for their right to simply be autistic, in a world that was made for neurotypical individuals. For me, acceptance is about adults with autism taking back their voice and for the rest of us to listen. After all, people with autism have a voice, we just have to give them the resources to use it. Acceptance is about accepting that my brother might not live on his own, he might not ever date, or have a family of his own; but that doesn’t mean that his life does not have worth and value. Whether or not he can verbally communicate what he needs, at the end of the day, his thoughts, emotions, and needs still matter.
On reviewing the difference between Autism Awareness and Autism Acceptance, I conclude that we need both. We still need research on helping people with autism be able to communicate, manage stress, and overall be able to navigate the world more efficiently. We still need individuals with autism to use their voice and be heard. But to become aware and accept autistic people is not enough. They need homes to be able to live in their communities, services to help them with their activities of daily living, staff who are skilled person-centered thinkers and make things happen. We need healthcare providers who understand how to communicate, examine and act respectfully to the needs of people on the spectrum. First-responders who can identify and know how to react when autistic people need their help. We need city planners to know that disability accommodations goes beyond a wheelchair and that sensory-friendly and cognitive-accessibility features help not just autistic people, but impact seniors, those with traumatic brain injury, people who can not read or where English is a second language. Most of all, autistic people need friends who will help them advocate for their needs and make sure they are able to live happy, full lives.
When I reflect on my relationship with my brother, I never want him to change. His spirit, his creativity, his infectious smile are what makes him unique; yet with the same breath, of course I want my brother to have a full life, to be independent, and at the minimum, be able to communicate with me. Of course I would love him to be at college with me, to travel the world, and participate in life to the fullest, but not at the expense of losing what makes him who he is. It is up to me, as an ally and a sister to create a world that he can exist in. One that may not be perfect, but one that will accept him for who he is and help him stay part of his community.