Tell all Tale of the Autistic Community

Autism. It’s a word that gets tossed around a lot these days. When people hear it, images of kids with behavioral issues, nonverbal ramblings, and at worst, very public meltdowns.

But this is only barely scratching the surface. A surface of stereotypes at that. Like many medical conditions, this particular condition could be seen as an iceberg. However, this iceberg goes much, much deeper than nearly any other condition. This iceberg is extremely complex. This iceberg is so deep that it may take a lifetime to see just how deep underwater it goes. This Iceberg is known as Autism Spectrum Disorder (ASD).

Like all medical conditions, it begins with diagnosis. The vast majority of autism diagnoses happen in childhood.

“It was roughly around middle school, and my mother sat me down to explain it to me. Though I suspect I was diagnosed sometime earlier by a doctor.” Autistic adult Gordon Sutherland said of when he was diagnosed.

These diagnoses happen fairly frequently. According to the Center for Disease Control and Prevention, one in 36 children born will be diagnosed with autism. Contrary to popular belief, ASD does not affect just while males. It does not discriminate against race, gender, ethnicity, or socioeconomic groups. As stated, autism exists on a spectrum. No two cases are ever exactly the same.

“Each case is unique. When I was learning about autism, the very first thing we learned is that when you know one person with autism, you know one person with autism.” Dr. Vidya Munandar, an associate professor who specializes in autism, said.

However, similarities do exist. And these similarities are what often point the way when autism is diagnosed. One of the most prominent similarities is a relative lack of skill in the field of communication. Depending on the autistic person in question, this can be either  figurative or literal. For some, it can be as simple as a speech impediment, something that, with enough practice, they can grow out of with time and practice. But for others, they lack the ability to form coherent words and make actual sentences. At best, they can be taught to use a text to speech device to make their thoughts known.

But even among those that can talk coherently, communication can be difficult, bordering on impossible. A common trait is an unwillingness, if not an inability, to look others in the eye when speaking to them. Another thing that comes up often in conversation with an autistic person is their tendency to take certain phrases literally. For instance, if one were to say the phrase ‘time flies’, they may misunderstand and think that a clock somehow sprouted wings and flew south for the winter. In short, they often have a hard time understanding figures of speech or sarcasm.

Perhaps the most glaring issue when it comes to autistic people trying to communicate is their tendency to experience context blindness. This means that they can struggle to understand how different situations call for different kinds of behaviors. At it’s worst, this can make them come off as tactless. They can inadvertently say the wrong thing at the wrong time and come off as insensitive. This is part of what feeds into the negative stereotype that autistic people are unfeeling robots, incapable of emotion.

Another well known similarity between many people on the spectrum is the tendency to suffer from sensory overload. In most cases, this comes in the form of aversion to loud and sudden noises. Overexposure to these negative stimuli can result in public meltdowns at their worst.

“Loud, busy environment can really overload me. When I go into overload, I tend to break down. I cry, rock back and forth, things like that.” Sam Pinnell, an adult with autism, said.

But sound alone is only one of the five senses. Those on the spectrum can also suffer sensitivity not to sound, but to things like light and texture. Imagine not being able to look at a display of holiday lights or hug a close relative because of how their hair feels.

“I’m not someone who struggles with sounds a lot, but I have issues with lights. I have to have my roommates warn me before they turned on the overhead lights. I physically could not look at the camera, and no one ever understood. But once I understood that about myself, I was good. I also hate rough textures, things have to be soft. They can’t be rough or scratchy.” AJ Orndorff, another autistic individual, said.

Another prominent similarity is for people on the spectrum to make repetitive movements, often with their hands. These movements, often referred to as ‘stimming’, can be a way of calming them down in tense situations or of trying to deal with sensory overload.

“I would twirl my pen, and I never stopped. It’s something that’s available to me at all times. It comes on if I feel overwhelmed. It can be rocking back and forth. It can also be vocal stims.” Orndorff said of his stims.

At it’s absolute worst, stimming can even be self-harmful.

“It’s really easy for me to get to self-harm levels when it gets too loud. Whenever I get really overloaded, I tend to hit the side of my head.” Pinnell said.

Stimming can come in forms other than just hand movements and self-harmful behaviors. The ways in which people stim are almost as wide as the autism spectrum itself.

One final similarity between nearly everyone on the autism spectrum is a heavy tendency towards repetitive behaviors. Because of how their brains are wired, those on the spectrum find solace in patterns and set routines. They tend to prefer for things to be in a certain location and their day go by a set routine. Substantial changes can, at best, force them out of their comfort zones. At worst, they can suffer a meltdown due to their set routine being pulled out from under them.

But this is not all bad, though. Having a set routine that they like to follow can make them ideal workers for certain jobs like assembly line construction or factory work. Since most of what is done in environments such as those is routine and not prone to much change, autistic people may be able to thrive in environments such as this. Attempting to find a stable career is hard enough for any person, but for an autistic person, it can be even harder since they tend to have issues in the field of communication. But putting them in aa situation where their specific quirks can be used to their advantage could do a lot of good. Not just for them, but for the industry they could potentially work for.

But in spite of all the similarities, the differences far outweigh them. These can go from behavioral differences to verbal impairments to what could be seen as abnormal interests.

“I would say the, at least from my perspective, is that I need to be more explicit in my communication. Instead of using more vague or abstract language. Or, I need to be more aware of whether…you know how in English, there’s a lot of expression? I actually am not from the U.S, so I’m learning about those expressions myself. So, that would be one of the similar characteristics that I noticed among young adults with autism, even though it’s a spectrum.” Dr. Munandar said.

Many autistics are very vocal about what they enjoy. They will often strike up conversations with complete strangers just for the fun of it. They also find solace in repeating things over and over. Their conversations with strangers often start with the exact same greeting, and they will bring up the same conversation topics. Compare that to others, who often try to remain quiet, preferring not to interact with others unless they interact with them first. If they choose to interact with others at all.

However, for some people on the spectrum, the two can be combined in some way. Sutherland, for example, will jump into any topic he finds enjoyable and interesting with gusto. He greatly enjoys topics such as tap dancing, the Star Wars franchise, and video gaming, among other things. When speaking on these sorts of topics, he will share as much information as he feels is relevant. Which is more than what others would deem necessary. On the other hand, if the topic of conversation is on a subject that doesn’t particularly interest him, he becomes relatively quiet, often using repetitive, one or two word replies to whatever is said to him.

The exact causes of autism have never been fully understood and continue to be debated among scientists and medical professionals. An autistic brain doesn’t look much different than a neurotypical brain, so it’s impossible to find out what causes it from that angle. Most experts believe environmental factors, such as age, genetics, factors in the womb, play a role. But how much of a role remains hotly debated. The common myth that vaccines are a cause of autism is squarely false, however.

All of these traits and facts are very true for children with autism. But what few seem to realize is that autism is a lifelong commitment. It’s not like a cold or the flu, where it will go away after a period of time. Rather, it is one of the few things that survives the transition from childhood to adulthood.

“It’s definitely been…complicated, I guess. As a kid, it was very difficult. In recent years, having a diagnosis of sorts…it’s definitely impacted me in more ways than I can fathom. I don’t think anything of it, since that’s how I’ve always been.” Orndorff said.

Adults with autism can often face harder challenges than children. For one thing, as with many childhood behaviors, it is less socially acceptable to act in certain ways as an adult. But unlike those childhood behaviors, where learning manners and natural maturity helps people grow out of such behaviors, autistic people have a much harder time doing the same. Their brains are wired in a much different manner, so attempting to stop what they’ve been doing their whole lives is much harder.

Children with autism already face enough scrutiny for their abnormal behaviors, but adults that exhibit them have things that much worse. Ignorant individuals often look at autistic adults as if they’re extraordinarily mentally impaired. They don’t know how difficult it is to act like a functioning adult while also having a mental disability to deal with.

“It’s definitely something that’s always present. I don’t always notice it, but other times, everything is screaming at me. I’m pretty decent at conversations, I’m not as bad as when I was younger. I learned to read people. My autism is definitely more sensory for me.” Pinnell said.

What perhaps hurts people on the spectrum most is that they are expected to behave as if they don’t have ASD. This can be next to impossible since they have lived with the condition their entire lives. While some of the individual symptoms can be managed, autism as a whole is something that can never fully go away. At it’s absolute worst, it can lead to gross misunderstandings that wouldn’t have occurred had people gotten proper education on the matter.

“High functioning autistics are way more common than people think, and it’s hard for us to feel valid. They make eye contact with us and try to hold a normal conversation. They refuse to believe that we’re a part of that community.” Pinnell said.

The best thing that adults on the spectrum can do is try to find solace in friends and loved ones. Trying to surround themselves with a support group that can understand and sympathize with them can be a big help. Whether that means full time help or being able to settle down with a family, any small amount of help is welcome, even if it isn’t apparent at first. It always pays to be surrounded by loved ones.