Okay, I'm about to get vulnerable, guys. I think this is an important topic to talk about and I really hope my story can be illuminating and helpful, but it's a little nerve-wracking to share, so if you leave comments, please use extra grace. Thank you! :)
I was diagnosed with Aspergers seven years ago, but I only really began talking about it online in the last couple of years. That says a lot right there about perception and comfort. I mean, when the most common public image of an Aspie is Sheldon Cooper...
...but that's exactly why I feel I need to write about it. The truth about Aspergers is that it is complex and it varies from person to person and from gender to gender. Girls manifest Aspergers quite differently than boys do, to the extent that we don't actually know whether there is a gender gap in numbers. Girls do a better job of mimicking their companions behavior, and girls also tend to be more nurturing of the oddball in their group, which makes it really easy for female aspies to slip under the radar.
Our perception of what Aspergers is pretty much "socially awkward rigid nerd who doesn't like physical touch and can't make eye contact." These are all certainly common aspects of Aspergers, but to have all of them is the exception, not the rule, and there are other symptoms that are less known, like stress management and stimulation factors.
My Aspergers manifests in the lesser known ways, and further more, not only am I female, but also deaf. This means that I am an extremely good listener, and I naturally picked up a lot more about facial cues than most Aspies do. Furthermore, being homeschooled, the people I emulated were my parents, who are both very charismatic and socially educated people. This meant that I didn't get diagnosed until I was 19 years old. (My husband was shocked when he found out, he thought I'd been diagnosed when I was six or something. But no one knew about Aspergers when I was six).
In fact the only reason I got diagnosed was because I had to live with five other women in college that I didn't know very well and who wanted the cleaning schedule to rotate every week. I had to share a bedroom, and I was pursing an English major. (I've learned since then that Aspies a) need their own personal space where they can go away when life gets too stressful and recharge, b) need to live with people who can give them a stable, consistent environment as well as a loving support system, and c) do better in concrete majors rather than abstract ones and English is tremendously abstract!). We actually thought the problem was stemming from my deafness, but when we went to the deaf counselor, she said "actually, everything you are telling me is indicating Aspergers." We went, "huh?" Because, like many of you, we had the public perception of Aspergers and didn't see the dots connecting.
The fact remains that many people who know me well, including my grandparents and former employer, have trouble believing that I have Aspergers because it simply does not manifest in typical, publicly observable ways (or at least, not since I've gotten old enough to manage that). On the one hand, this is nice because the last thing I want is people bringing preconceptions to the table about me. I'm not Sheldon Cooper (although I think he's adorable). My struggles are different, and tied closely to my hearing loss and health. On the other hand, it's hard because I can't just say "I have Aspergers" and expect people to grasp what sort of extra struggles I have. Saying "I'm deaf" is easy, saying "I have Aspergers" is a whole 'nother can of worms. I prefer not to open that one until people have had a chance to get to know me without the label.
But... I'm grateful to have the label. Getting my diagnosis was both really hard and a huge relief. On the one hand, I felt "great, there is something else wrong with me!" but on the other hand I took a deep breath and cheered "I'm not a horrible person, My brain really processes X Y and Z differently!" Understanding how my brain works has helped me understand myself, give myself grace, and explain my needs to the people around me. It has helped me set the boundaries that I need, but also learn what areas I have to work on in order to have healthy relationships with my friends and family.
While I have had some struggles with social understanding, it is pretty mild considered to what most people think of when they hear "Aspergers." I do have a personal space bubble, but I love hugging my love ones (even if I prefer being the initiator). Being a big reader has helped me understand other people, being an actor has helped me explore expressing myself, and being deaf has helped me be observant.
Another typical Aspie trait is obsession with a hobby or topic (think Sheldon and trains). I definitely had this when I was younger, although as I've gotten older I've diversified a lot and I've been well trained in being a good listener to other people and asking them questions about their hobbies and interest and not just pontificate about my own.
My biggest aspie struggle is managing stress and stimulation. A common Aspie struggle is being able to healthily process stress, and it is not uncommon for them to bury negative feelings rather than process them, only to have it all flare up when that last straw gets dropped. The people around them are left thinking "wow, they are making a big deal about nothing" when really, it is a lot of unresolved issues finally leaking out of the punctured balloon. (In case you haven't noticed, I do not have trouble with that other common Aspergers trait - not getting anything that is not literal, like a metaphor!) This stress management issue is big for me, and because my body turns stress into sickness, it plays a big part in my every day life. Most people don't see me when I'm stressed and sick because I stay home, so they don't realize how much it affects me.
One of the biggest causes of stress for me is unexpected change. This is a more typical Aspie struggle, and why Aspies can be seen as rigid or inflexible. I've worked extremely hard to become more chill, and more 'go with the flow', and it's made life easier, but I also have learned to accept that there are some limits to how much change I can tolerate before it overwhelms me. When I'm in control of the change it's not as stressful, which is why I can initiate a last minute change of plans and it doesn't bug me, but if someone else does, it can be difficult. When I was younger, this was a pretty sure-fire way to trigger a freak-out - it's gotten a lot better now, but I still really appreciate it when people give me as much advance notice for anything as possible.
The other big issue for me is external stimulation. Bright lights, loud or irritating sounds, uncomfortable clothes, too much movement, too many colors; all of these are extremely draining to my system. I like leaving the house and going places and hanging out with friends - but I tire much quicker than the average person (remember, I lipread everything too!). This is a big part of why it is much easier for me to have people over to my house (everything is familiar and set up comfortably) then to drive somewhere and experience a new or not-so-familiar place. Ironically, I actually really like exploring new places and trying new food, it's just that it really wears me down. I have to have the majority of my life be the familiar and comfortable so that I have the energy to do the new stuff sometimes.
In a way, my type of Aspergers is kind of like depression, in that it's not something the outside world always knows exists, simply because when it flares up, you retreat to your fortress of solitude.
BUT - there is a really big difference between Aspergers and say, depression or bipolar disorder. Aspergers is not an illness, it is not a virus or a cancer or a hormonal imbalance that there needs to be a cure for (although there are things you can do to help your body manage stress and stimulation better and you can learn strategies for understanding body language, etc,.). It is a different type of brain. You still have to learn to function in a world of neurotypical people, but very often being an Aspie also comes along with a superpower. (In fact, having at least an average and usually an above average IQ is a requirement of getting a diagnosis). Hyper-focus, for example, can cause problems, but it can also lead to major breakthroughs in the Aspie's field of interest - it's no coincidence that Sheldon Cooper is a very successful Ph.D! For me, I believe my aspergers has played a role in how I have developed my sewing and also my ability to immerse myself in my writing and pound out a thousand words in an hour.
And with great power comes great responsibility. An Aspie cannot expect the world to conform to them. They must do everything within their power to grow their own understanding, and to develop strategies for coping. People who are kind and caring will listen when we explain our differences, and will understand the need to adapt some of their own behaviors to help us, but it is up to us to learn how to articulate what we need, and to recognize that we are neither superior nor inferior, merely different. We can't ask more from people than we can give, but neither can we relinquish the responsibility to use every resource we personally have to learn to function in the world we live in - and to bless others with the gifts we're given.
I wish my body could handle stress. I wish I didn't get overstimulated. I wish I never had to worry "am I interpreting this social cue right? Did I just say something hopelessly inappropriate? Are they judging my aspergers? Why am I getting so emotional about this little thing?" But I am grateful for understanding, both personally and in the people God has put in my life. And I'm grateful for the skills I've been able to develop because of this unusual brain.
My personal observation is that it's better to know and understand who you are, so if you think there is a chance you or a loved one might have Aspergers, I would encourage you to seek a diagnosis (or encourage your loved one to get one, if you have that kind of trust relationship). It's not about labels, it's about freedom from misunderstanding.
I also strongly encourage anyone with an Aspergers diagnosis to take advantage of meeting with a counselor at their local autism society. Traditional counselors deal with the abstract, and can be frustrating for those on the Autism spectrum who deal in the concrete. A counselor experienced with Aspergers and endorsed by your local autism society will have specific concrete tools for you and your loved ones to figure out how to navigate life with both your superpower and your kryptonite.
Sharing weaknesses is scary, and it's taken me seven years to be able to write this post. My hope is that it can be encouraging and educational, both to those who might be on the spectrum, and to those who live in the same spheres as my fellow aspies.