As·per·ger’s – Most have heard of it, some don’t know how to say it, and many aren’t exactly sure what it means.
Merriam-Webster defines Asperger’s syndrome as “a developmental disorder resembling autism that is characterized by impaired social interaction, restricted and repetitive behaviors and activities, and normal language and cognitive development.” The name comes from Hans Asperger, a pediatrician who first described the behaviors that fall within the disorder.
Asperger’s is a neurodevelopmental disorder, but it is not autism. To sum it up, someone with Asperger’s has to work harder to learn the social and people skills that most pick up intuitively. They can also have delays in motor coordination and executive functioning (organization, prioritizing, and follow-through). Unlike autism, Asperger’s is not characterized with delayed language or often associated with challenging behavior problems.
One more thing before we get into the myths and facts – the term “Asperger’s syndrome” actually isn’t used anymore when diagnosing patients. The Diagnostic and Statistical Manual of Mental Disorders is the guide used by many clinicians when making diagnoses. Previously, this manual explained that an Autism Spectrum Disorder was one of five different disorders, one of which was Asperger’s Syndrome. In its latest edition in 2013, this changed. Now, ASD is its own, singular disorder with different levels of severity (level 1, level 2, and level 3). So, children who may have been previously diagnosed with Asperger’s syndrome may now be diagnosed with ASD Level 1.
Now that we know what it is, let’s clear up some common misconceptions about Asperger’s. Along with each myth and fact, you’ll read the reality of a personal account from the older sister of a young man who was diagnosed at Emerge. We hope reading these stories helps further explain how the syndrome embodies itself.
Myth #1: If a child is obsessed with a certain movie or hobby, they probably have Asperger’s.
Fact: It is true that many people with Asperger’s have strong interests in specific topics, but so do “typical” kids. The difference here is the intensity of the interests and how that dictates conversations or daily routines. For someone with Asperger’s, immersing themselves in every detail of a TV show or topic serves as a way for them to relax. It also provides them information to use when it’s required that they communicate with others. Since they don’t have the innate social skills to navigate an organic conversation, they tend to cling on to their hobbies as a topic of discussion, even if the other person isn’t showing interest.
Story: For two years of my life, when my brother was three and four, the only thing that played on our TV was “The Grinch,” the Jim Carrey version. I can recite every word of the film using the different vocal inflections by each character, and even pantomime the actors’ movements. Next, it was “Spiderman,” the 2002 version. I feel like I have a personal friendship with Tobey Maguire. Sure – any little boy might have superhero PJs, toys, bedding, dinnerware, etc., but does any little boy dominate a conversation with the exact script from a movie, for years on end, during every conversation they have, with any given person? Even when the person changes the topic of the discussion? Eventually it becomes like white noise, which is a heartbreaking thing to admit, but as a moody 15 year old, I was not interested in reliving Spiderman’s turmoil every day, and at the time couldn’t understand that there was more going on than having an annoying little bro.
Myth #2: People with Asperger’s isolate themselves and don’t want to make friends.
Fact: A child or adult with Asperger’s lacks the skills needed to thrive in a social setting. They aren’t able to naturally pick up on social ques or body language as well as most. Therefore, they may often distance themselves from others because the situation is too uncomfortable, or they find building a relationship to be difficult or stressful. That being said, they don’t lack a desire to develop friendships! If you didn’t have the skills to be a great soccer player, would you want to sign up for a soccer league? Probably not, but that doesn’t mean that you don’t want to be active.
Story: My brother definitely didn’t have the same kind of friendships that I did at his age. I was constantly having sleepovers, being invited to birthday parties, and thriving in after school activities. I’m certain that my brother felt uncomfortable reaching out to peers at school, as well as them thinking he was “weird” or “nerdy.” As he got older, around the time of middle school, I can recall him being really lonely and feeling like an outcast. I knew if kids would just give him a chance they would see how FUNNY he was!
Myth #3: Having Asperger’s means you’re a genius.
Fact: It is true that many people with Asperger’s do have an IQ in the “above average” range. They have excellent memories, are deep thinkers, and are often times particularly well-educated in their strongly preferred interests. Additionally, their specialized interests often become a source of pleasure and motivation and provide avenues for education and employment later in life.
Story: No doubt about it, my brother is smarter than I am. Still, I was much more successful academically. Unlike him I am extremely organized, place a lot of value my grades, and can prioritize study time over free time. He lacked, and still lacks, those skills that came so easily for me. He loved to read and be read to as a child, and even now can go on and on about a wide variety of topics that I, being ten years older than him, have little concept of. His memory far surpasses mine, and he is constantly questioning thought provoking topics – like ethics, religion, and even politics.
Myth #4: Asperger’s is a result of bad parenting.
Fact: Asperger’s stems from a neurological difference. There are some things to consider here that would lead someone to assuming “bad parenting” is a cause. First, a parent could have Asperger’s and not be aware of it, leading to the parent not realizing that their child is atypical compared to their peers. Secondly, if indications of Asperger’s go unnoticed by a parent (due to a busy life schedule, multiple other siblings, financial concerns, etc.), not addressing the issue can perpetuate the severity of the child’s symptoms. While environmental factors don’t contribute, most medical professionals do agree that it could be a result of other risk factors like prematurity, exposure to toxins in utero, etc.
Story: My parents were divorced by the time my brother was three. Even though there was no “bad parenting” at play, and we were both extremely loved, the stress and distraction they faced from the divorce may have had something to do with my brother not being diagnosed until he was 17. The next ten years was far from easy for both my parents, especially when it came to finances. When the topic of Asperger’s first came up and we looked into him being evaluated around the age of 13, the cost of an evaluation put it out of the question. It wasn’t until just recently that my mom was able to bring him to Emerge. He also has a substantial level of anxiety, which he now takes medication for. It’s not uncommon for someone with Asperger’s to have anxiety due to their level of discomfort in social settings, but I don’t think it’s crazy to say that had he been evaluated earlier, had my parents known how to handle his atypical behavior, life would have been much less stressful and he may not have the anxiety he does now.
Myth #5: People with Asperger’s don’t make eye contact.
Fact: One of the most well-known books on the topic of Asperger’s is titled Look Me in the Eye: My Life with Asperger’s.” This characteristic is something that almost anyone who’s heard of Asperger’s will use to describe the syndrome. Because of their discomfort in social settings, although unintentional, a lack of eye contact is very common. This goes back to the absence of social skills we mentioned before. Having Asperger’s is often characterized by talking too much, standing too close, and lacking eye contact – all actions that result from a lack of boundaries or social discomfort.
Story: Our refrigerator is covered in family photos from Walt Disney World. In these pictures, my brother is anywhere from one to eight years old. I would say there are two photos where he is looking at the camera. Until he was around 12 years old, it was very difficult to get him to smile at a camera. I have vivid memories of both my mom and I being SO frustrated trying to get him to pictures at Olan Mills portrait studio. “Cute smile, just look over here. Look right here. LOOK AT FUZZY BALL! Look, look at Batman! Just look HERE! I’m paying good money for these photos just LOOK OVER HERE!” Same went for normal eye contact when speaking to people. As he’s aged, his eye contact has improved, but it certainly doesn’t seem natural or comfortable. He often overcompensates his discomfort by coughing or pretending to lose train of thought to break up the tension.
Myth #6: People with Asperger’s lack empathy.
Fact: Even though this is untrue, it’s easy to see why some would think this. For someone with Asperger’s, it can be really hard for them to recognize someone in need of compassion. Things like body language, subtle facial expressions, and even a change in someone’s voice can go unrecognized. They can also lack knowledge of how to show empathy, and respond in a way that feels natural to them, but not a way you would expect.
Story: My brother is one of the most kind-hearted, caring people I know, but that doesn’t mean he’s always the best at providing comfort or expressing his own feelings. He can be really uneasy around someone who is sad or ill. When my grandfather was given just a few weeks to live in 2013, we went to visit him in Florida. He had lung cancer and was not in the state anyone would wish to see a loved one in. My brother had a really hard time being there, and it wasn’t easy to get him to come either. While we were there he stayed in the other room, avoided discussing the situation, and brought up un-related topics like new movies or new rides at Disney World. Being the older sister with the a bit larger scope and understanding of life, I wanted to make sure he got a chance to say goodbye and didn’t regret missing it in the future. Eventually, he did go up to our grandpa. It certainly wasn’t the same experience myself or my uncles had speaking to him. It was more of a normal “hey, how’s it going?” The fact that he could even walk up to him was impressive, and I’m glad I encouraged him to do so.
Myth #7: People with Asperger’s will grow out of it later in life.
Fact: While the traits of Asperger’s do not go away as a child grows up, some people do exhibit a decrease in symptoms as they age. As is true with every individual, the more you mature, the more you are able to handle yourself appropriately in society. The older someone gets, the more they will learn to better manage their differences – so it isn’t uncommon to see the severity of Asperger’s decrease as children age into their late teens and early twenties.
Story: My brother is now 18 and I’m 27. He’s a senior in high school, and being in that environment has really helped him evolve. He still has an obsessive personality, but now his focuses are on things that could potentially lead to a career. He still struggles in school, A LOT, but he’s smarter than most kids I know. We still talk about the same things every time we see each other – new movies, which he critiques (pretty well, might I add), and Disney World. What’s changed most is my family’s perspective of him. Now we understand why he does the things he does, and that makes us much less frustrated, allowing him to feel less stressed and more comfortable. When I see him, I’m thrilled to talk about the latest song he’s working on or what he thought of the Captain America movie. Thankfully when he entered his sophomore year of high-school, he found a hobby within school in band and his peers were able to see him as being much more approachable. He’s going to continue to struggle to fit in, and navigating adulthood will be harder for him than it was for me, but I’m confident his abilities will make him stand out from the rest, and that as he continues to mature he will continue to thrive.