By Keishya Fiore, Educational Advocate
As some of you may know, April was Autism Acceptance Month. The shift was made away from Autism Awareness Month in 2021, which calls into question whether people are informed about autism or accept autistic individuals for who they are.
Officially, it was made to de-stigmatize autism, which is a valid point. However, although people are aware that autism exists, is it understood? Is it accepted? And have we, as a society, moved beyond simple awareness?
These are big questions, and quite frankly, I do not think I, as an outsider to the autistic community, should answer them. However, at The Option Group, we work with and help families of autism every day, and so our mission this April was to make sure that the “awareness” people have is accurate. With accurate information, we can move into an acceptance that goes beyond tolerance and normalizes neurodiversity. For that purpose, I interviewed parents, providers, and people with autism. Regarding the privacy of the autistic individuals, their names have been changed to Ben, Jordan, and Alexis.
In understanding autism, it is essential to understand that autism is a spectrum disorder. To quote Ben, “Autism is like snowflakes; no two people are alike.” Every single person I spoke with said something along these lines. Autism is a spectrum- it expresses itself in different ways and to varying degrees in each person. According to the Kennedy Krieger Institute, “Autism spectrum disorder (ASD) is a brain-based developmental disability that affects a child’s ability to communicate, understand language, play, and relate to others.” Kennedy Krieger goes on to explain that an individual must “display at least five of seven symptoms distributed across two major areas” to be diagnosed with autism. Those areas can be summarized as “social interaction and communication deficits” and “restricted, repetitive patterns of behavior, interests, and or activities.” Someone with ASD may have some but not all of these characteristics at varying degrees. According to the CDC, people with ASD may also have challenges with language skills, learning skills, impulsivity, hyperactivity, inattention, anxiety, unusual eating habits, lack of fear, epilepsy, etc. Again, there are more characteristics, and a person is unlikely to display all of them, which is why ASD is often misdiagnosed as something like ADHD with a language delay. Autism, like people in general, is complex and cannot be tied to a single set of characteristics.
A parent of a child with autism, Tawanna Davis, explains, “I would like people to understand that autism is something that someone has been diagnosed with, but is not the person.” A client I work with explained that they do not talk about autism at home- autism is not an identity; they are more than that. Others have expressed that they like having the label and own it- “this is why I’m different; it’s not just me, and I finally understand why I think like that.” Mrs. Davis explains, “. Autism is you, it’s me, it’s normal, and normalization is part of my world, and we shouldn’t look at people differently; we should respect each other’s differences. The world needs to embrace autism the way that autism embraces the world- they teach us, and we learn so much from them. We all have much to offer to this world; we’ll all be different, we’ll all be unique, we all have special abilities and have much to offer.”
When I spoke with Ben, he had such an open and cheerful disposition. He explained, “I am social; people don’t expect that [but] I want to sit down and be social at work.” A mother I spoke with, Nikki Stokes, who is also the Resource Coordinator at Pathfinders for Autism, echoed these thoughts, “people expect autism to be like [the movie] Rain Manbut…once you know one person with autism, you know one person with autism.” Neurotypical people look to media and have these preconceived notions of what autism looks like, but it honestly does look different for every person. “There is no typical,” another person, Jordan, explained, “what it is is me not fitting into the norm.” Jordan points out that people expect them to be nonverbal, dysregulated, and nonfunctional when Jordan is a highly competent and independent professional.
It bears repeating that autism is a spectrum disorder. All of the adults I spoke with have jobs, most live independently, and the majority are very social—all things that counter the autism stereotype. Another person I interviewed, Alexis, described herself as adventurous despite finding comfort in the familiar, while Jordan prefers routine and repetition.
“There are different levels and varieties,” explains Alexis, “I have a different method of thinking and doing things, but many people think differently.” At the heart of it all, autistic people are people, and people, as a species, are diverse. We all think differently. When speaking to one provider who works with people on all ends of the spectrum, “I love how people think,” says Sharon, a community support provider with a background as a teacher in the school district’s Functional Academic Learning Support (FALS) program, “and we all, typical or not, think differently. I find it very rewarding, and hopefully, I’ve been helpful.”
For some of my interviewees, others’ perceptions of autism played a significant role in their lives and how they view themselves. Masking is a big part of this. “Masking” is the term used for when a person with autism changes their behavior to appear non-autistic to better fit into society. Alexis explains, “I don’t want people to know. It wasn’t until recently that I started disclosing it more. I would mask because of a fear of rejection. People will take [my autism] in a negative way and not really understand, so I feel a lot of pressure to mask.” Jordan agrees, “Masking is exhausting! I feel like I have to mask. I’m weird, annoying, talk a lot, and am overwhelming, so I just started acting like the type of people like myself wasn’t socially acceptable, but it made me feel like I don’t know who I am.” Jordan does later disclose that they “have a better sense of self now, I’m different in a good way, not a ‘bad’ different.”
Whether or not someone chooses to mask is a personal choice, but everyone agreed that it was, in fact, exhausting. We all mask to a degree. For example, we act differently at home than we do at work, but for people with autism, there is an extra layer. They not only have to act differently than their true selves but also be cautiously aware of how others are acting, how they are thinking, and how not to act in a way that is natural, which can mean acting in a way that causes them great dysregulation. It is one thing to change your vocabulary because you’re in an office setting; it is quite another to, say, deny yourself water when you are thirsty because wanting water wouldn’t be appropriate, and you shouldn’t be thinking about water at all. Still, it’s all you can think about, and your mouth is dry, and you’re getting a headache, but if you mention it or try to get a drink, people will look at you funny.
Interestingly, the reason females are often diagnosed later in life is because they tend to mask more. In my chats, it appeared that females also felt more pressure to mask than the males I talked with. I spoke to one autistic man in the past who told me that he was “done with masking.” He says he can do it but is tired of it and appears happier for it. Ben also makes the decision not to mask and insists that autism has no negative impact on him. “I don’t think about [being autistic] much. I have plenty of support- family, friends, resources- I drive and am very independent. There was a struggle as a child, but I’ve managed through it.” Ben’s outlook was nearly the exact opposite of Alexis’, which reinforces what everyone has said: people with autism are all different. As Sharon says, “There shouldn’t be an ASD stereotype anymore because there is such a wide range of how ASD can be expressed.”
Indeed, how can one stereotype such a diverse population? In moving from awareness to understanding, our society can move to acceptance and inclusion.
If you or someone you care about needs additional support to help cope, The Option Group is here to help. Don’t hesitate to contact our professional care management and educational advocacy team for assistance.
About The Option Group: Founded in 2010, The Option Group’s dedicated team of Certified Life Care Managers and Educational Advocates caters to family caregivers, medical professionals, and professional family advisors in Maryland, South/Central Pennsylvania, Philadelphia, Delaware, and Virginia. Older adults, or anyone with disabilities or chronic conditions, deserve exceptional care. Whether helping in a crisis or being proactive, we quickly and professionally assess situations and guide you and your family to the best decisions. The Option Group can give you the safety, independence, and peace of mind you need. For more information, visit www.theoptiongroup.net or call 410-667-0266 (MD) or 717-287-9900 / 610-885-8899 / 215-896-6756 (PA) or 302-858-6449 (DE).