Special Feature — Hear From Local Autism Warriors

By Kami-Leigh Agard

In celebration of April Global Autism Acceptance Month, hear from a spectrum of caregivers and autistic individuals each imparting their lived experiences and perspectives. In this week’s installation, meet autistic 35-year-old Joseph “Joe” Munisteri, a resident of Long Beach and board member of Rockaway Beach Autism Families, who in the following blew my mind, gifting me a bird’s-eye view of what maybe fluttering like a butterfly in my nonverbal daughter’s mind.

Authored by Joseph Munisteri

HHHMMMMM MMMMNNNN  NNN…. is the sound in the room, as a child makes sounds while flapping their hands back and forth, releasing their excess energy pent up throughout their nervous system. Now, take that image of a child I just gave you and replace it with a grown adult. This is one of the many stereotypes of autism. Here is the reality, imagine that same adult is a grown man who learned as a child to hide or mask their autism from public view. So, instead now they pick at or twirl their hair while trying very hard to cope with anxiety. That anxiety stems from being around people in public and lacking proper social and life skills. The sounds in a place become overwhelming, and because they have a disconnect from their nervous system, the anxiety builds. They have learned to hide these struggles from public view because they were taught—they must fit in with societal standards and expectations. Now they must find creative ways to release the energy that has built up from their nervous system, which is played off as “anxiety,” and this of course assumes they are even aware of it. Most are unaware of it.

I have Autism, I have learned to hide it and mask myself in society, learning to channel those symptoms into something else, at least when out in public, but everyone who meets me, can tell I am different, but can never quite put their finger on it, except those who know what to look for. But when I take the mask off and get home, you’ll find a different person. A nearly 35-year-old man, who cries to himself because he continues to pass through communities, connecting others, but has yet to find a community where he can fit in and feel like he could be himself. Those who meet me in a professional setting see one side of me, while those who see me at comic book and trading shows see another. Then, because I work as support staff for people with developmental and intellectual disabilities such as autism, others see a whole other version of me. The latter also adds much more complex layers to my own perspectives on autism, as it means I both have autism and work with and support those who also have autism. This does not include my advocacy as well. Now imagine what it must feel like to be supporting others, while also struggling with those same or similar issues? It creates many complicated emotions, but that is because I have found that it’s REALLY EASY to help others, but SO MUCH HARDER to help oneself. These emotions are all amplified by the time I get home and then realize that everything I had planned in my head for my life or even just my day, is not really possible due to now having to find a way to regulate my nervous system, all while trying to balance my home life with my work and social life.

Living in an apartment is new to me. I don’t know my neighbors or my community, and I feel very lost. I struggle with getting things that ordinary people can get done easily, like planning and cooking dinner, or doing laundry or cleaning and staying organized. These are all the struggles that are not seen.

In my work life, I have always struggled to move up in my field of work and unlike my peers who tend to job hop frequently to increase their pay, I have instead stayed at the same job for a decade now, longer if we use the term, “Direct Support Professional” (DSP), and look at the job title as opposed to the job itself. The worst is when people infer that because I am “functional,” I am lucky, but often I feel that it can be a lot more difficult, because it means I need help, yet I struggle to get the proper supports or find the community that accepts and makes me feel like I fit in. This creates a butterfly effect where I am right on the line, always on the edge of crashing and burning out, while also creating a cycle of pushing forward, which only amplifies the inevitable burnout building up over time.

However, because of my insights as both a person with autism and a person who works with those with autism, it gives people hope, and that keeps me going. And maybe, just maybe, if my perspectives are amplified with my advocacy and creativity, then perhaps we could view autism in a different light.

Perhaps, if we were to explain autism in a way that emphasizes the hidden and unspoken challenges that those with autism face—things that may be obvious for some, but very hidden for others.

I could have used this article to talk about autism acceptance or things like my own achievements or failures all I want, but that just is not realistic, and I feel like it would be a wasted opportunity to talk about the real topics. These are things in which I challenge you to research. Look up autistic YouTubers and bloggers. Research concepts like “Nervous System Dysregulation,” which is when a person has some form of disconnect with their nervous system. Also, “Autistic Inertia,” which is how many with autism struggle to start a task, but then once they begin that task, they build up inertia and it becomes a hyper focus, and now they struggle to shift to a different task. Once again leading back to nervous system dysregulation. Go down the rabbit hole, and eventually it will always lead to the same conclusions though, which is the need for a sense of community. And that is not just for those with autism, but for EVERYONE in society. We all need a sense of community. I’m not sure how else to end this article other than that as a person with autism, who also works with people with autism, that lately I have been incredibly scared and feel very lost, and if I feel that way, then others must also feel that way too.

For RBAF’s Autism Awareness Month events, including Radio Bingo Fundraiser; 3rd Annual Walk for Autism, family support group meeting featuring speakers addressing special education, visit: Rockaway Beach Autism Families on Facebook/ Instagram or www.rockawaybeachautismfamilies.org