First, what is Aspergers?
In short I had to learn a lot of different social rules before I would be considered relatively normal by my peers. I had to study the art of conversation, when to get out before I bored others with endless ranting about various tangential facts. As a middle schooler I would speak in metaphors and code, often making me too weird to engage as a peer, but as a pupil teachers found me to be endearing. So at least I had that going for me.
Below is an official synopsis authored by the Asperger/Autism Network which explains the 10,000 foot picture far better than I could. If you’re looking for the TL;DR, scroll down to the bulleted list.
Asperger Syndrome (AS) is a neurological condition. People who have AS are born with it, and have it for life, although as they mature they may gain new skills, outgrow some of their AS traits, or use their strengths to compensate for their areas of disability. AS is generally considered a form of autism, an autism spectrum disorder (ASD)….
No one really knows how prevalent AS is; perhaps one in every 250 people has AS—and maybe more. Dr. Tony Attwood estimates that as many as 50% of people with AS remain undiagnosed, in part because AS has only recently been publicly recognized on a broad scale. (It only became an official diagnosis in the United States in 1994.) Some people with AS continue to be misdiagnosed, while others “fly under the radar.” That is, they have traits that are mild enough so that they manage to adapt and function sufficiently well to be considered merely eccentric or quirky.
The brains of people with AS seem to process information and sensory stimuli differently than the brains of neurotypical (NT) people. This can be a source of difficulty, but it can also be a strength. For example, people with AS are often very good at noticing visual details or remembering facts, skills that are useful in many professions. On the other hand, the same people may be too perfectionistic, become too obsessed with details, or have so much trouble seeing the big picture that they cannot complete a project.
While respecting the abilities and humanity of people with AS, one should not underestimate their struggles and suffering. A society designed for and dominated by the neurotypical majority (i.e., people who do not have AS) can feel uncongenial and even overwhelming for a person with AS. In particular, living in the United States in the modern information age—in a crowded, complex, industrial society—can pose real challenges for people with AS. American children are generally expected to “play well with others” and grow up fast. Adults are expected to work 40-60 hour weeks under fluorescent lights, to attend meetings, work on teams, rapidly absorb oceans of information, and multi-task. Solitary pursuits such as hunting, farming, or tending a light house are less available today. On the other hand, some people with AS have found employment (and sometimes mates) in the computer industry and the global economy.
People with Asperger Syndrome usually experience:
- Difficulty knowing what to say or how to behave in social situations. Many have a tendency to say the “wrong thing.” They may appear awkward or rude, and unintentionally upset others.
- Trouble with “theory of mind,” that is, trouble perceiving the intentions or emotions of other people, due to a tendency to ignore or misinterpret such cues as facial expression, body language, and vocal intonation.
- Slower than average auditory, visual, or intellectual processing, which can contribute to difficulties keeping up in a range of social settings—a class, a soccer game, a party.
- Challenges with “executive functioning,” that is, organizing, initiating, analyzing, prioritizing, and completing tasks.
- A tendency to focus on the details of a given situation and miss the big picture.
- Intense, narrow, time-consuming personal interest(s) — sometimes eccentric in nature — that may result in social isolation, or interfere with the completion of everyday tasks. (On the other hand, some interests can lead to social connection and even careers. For example, there are children and adults with an encyclopedic knowledge of vacuum cleaners.)
- Inflexibility and resistance to change. Change may trigger anxiety, while familiar objects, settings, and routines offer reassurance. One result is difficulty transitioning from one activity to another: from one class to another, from work time to lunch, from talking to listening. Moving to a new school, new town, or new social role can be an enormous challenge.
- Feeling somehow different and disconnected from the rest of the world and not “fitting in”—sometimes called “wrong planet” syndrome.
- Extreme sensitivity—or relative insensitivity—to sights, sounds, smells, tastes, or textures. Many people outgrow these sensory issues at least to some extent as they mature.
- Vulnerability to stress, sometimes escalating to psychological or emotional problems including low self-esteem, depression, anxiety, and obsessive-compulsive behaviors.
AS affects people lifelong, but many can use their cognitive and intellectual abilities to compensate for some of the challenges they face, so as people grow, AS can be managed….
Traits and talents from which individuals with AS often benefit include:
- Normal to very high intelligence
- Good verbal skills, including rich vocabularies
- Originality and creativity including a propensity for “thinking outside the box”
- Honesty and ingenuity
- Careful attention to details
- Strong work ethic, with particular attention to accuracy and quality of work
- Special interests that can be tailored toward productive work or hobbies; individuals with AS who have intensive knowledge in one or more specific areas can channel their expertise toward new discoveries and creations in their chosen field
- Keen senses allow some people with AS to see, hear or feel subtle changes in the environment that others do not, resulting in phenomenal powers of observation
The gap between intellectual ability and functional presentation complicates the AS experience. Friends and family members often see a highly intelligent, talented individual, and cannot comprehend why the person with AS struggles during routine social or organizational experiences.
One of the frustrations of an Asperger diagnosis is that because people with AS are often extremely bright, with excellent rote memories and verbal skills, overall expectations for these individuals are high. Those around them may be surprised to see how deeply people with AS struggle in certain areas, such as the social realm, and may not understand that such difficulties are valid and real. Many times, people with AS are blamed for behaviors they cannot control.
After 10 years of unofficial behavioral training, and I confess to someone that I have Aspergers a form of Autism, they’re first response is…
You dont seem autistic
And to that I often shrug and say,
“Thanks I guess.”
The challenge is this is often a silent and invisible disability. People often judge me against the marker of someone that is 100% normal, and I want to be treated like normal person, but its hard to have an off day in on always on world.
I’ve often contemplated sharing my thoughts with the world, but have remained silent for fear of judgement, and wondering if I could ever author posts that I’d deem worthy of being read by strangers. Go easy on me internet, and screw you fear
Today I throw aside the blanket of caring what others might see or think. I find there are far too few resources or places to go for women with AS. I’ve found that virtually every book I come across uses the pronoun of he almost exclusively with some sort of disclaimer at the beginning of the book explaining their choice. This will not be a space that follows that principle. If I am able to help just one woman, teen, or girl with AS, it will all be worth it. Also there are million travel blogs out there, but none that I can find that speak to what it means to have experiences and go to distant places while wrestling with the ongoing challenge of managing AS.
So I’m going to focus on the ladies of the world with AS and see if we can dialogue about what it means to have AS in a world that has such high expectations of all women, and Asperger’s being an invisible disability makes it all the harder to have it together. I’m currently reading Aspergirls, and it has proven to be so incredibly encouraging to know how other women have faced everything from, dating, college, marriage, divorce, and children. While reading through the book I thought to myself, I have quite a life story and so many challenges I’ve faced and overcome, why not share them with the world and see if I could encourage another woman fighting to get through life with Aspergers?
I travel internationally a fair amount, due to my job, and plan to share my experiences through the lens of Autism. Over the arc of my life, I’ve discovered tips and tricks to make travel not only bearable but pretty fun. As I discover new cities in the world I will share my experience as a person that loves travel and struggles with some of the unique challenges AS presents when you’re not in a controlled home environment. I also hope to hear your stories, to exotic places like Morocco, or bustling New York City.
You should know I love Jesus. There’s no getting around it. I find that faith is not often discussed in the context of a disability. I hope to change that and shed some light on how I process the challenges that life throws through a Christian lens whether it be a death, job loss, or simply having a rough day abroad.
Romans 5:3-5 “… we also rejoice in our afflictions, because we know that affliction produces endurance, endurance produces proven character, and proven character produces hope. This hope will not disappoint us”
I believe that God is authoring an amazing story through the way he uniquely made me and has brought through so many challenges, it would take years to write them down.
The video below does a great job that aligns with my beliefs concerning how God works through a disability.
Sometimes what God leaves out is just as important as what he put in.- Steven Furtick