My name is Jo Moody, I’m 21—22 on July 18th, 2012—and I have a mental disorder known as Asperger’s Syndrome. I’m writing this in hopes that I can help others who may have it and don’t know, for those who do know they have it and need help coping with it and the family members of these people.
And to dispel any haters who may want to claim I have no idea what I’m talking about, I am aware that I am not a doctor. I don’t have degrees in psychology, psychiatry or neurology. BUT. I do have a degree in Health Information Technology (HIT), training as a nurse’s assistant and have been studying anatomy and physiology ever since I got out of high school.
I am not a doctor, but I HAVE this disorder. And all I can recommend to folks who have suspicions that they might also have this disorder is that they see a qualified doctor to get diagnosed. This is essentially a report on my experience in having this disorder.
Kay, we good? Good. Moving on! (Bear with me if this post is confusing or doesn't flow very well, please. XD; )
I can already guess that one of the first questions most will have is ‘What is Asperger’s Syndrome?’
Well, according to WebMD.com, a popular medical website, it is defined as:
“Asperger's syndrome, also called Asperger's disorder, is a type of pervasive developmental disorder (PDD). PDDs are a group of conditions that involve delays in the development of many basic skills, most notably the ability to socialize with others, to communicate, and to use imagination.”
Another website, Kidshealth.org, defines it as:
“Asperger syndrome (AS) is a neurobiological disorder that is part of a group of conditions called autism spectrum disorders. The term "autism spectrum" refers to a range of developmental disabilities that includes autism as well as other disorders with similar characteristics.”
And finally, the great and powerful Wikipedia.org tells us:
“Asperger syndrome (AS), also known as Asperger's syndrome or Asperger disorder, is an autism spectrum disorder (ASD) that is characterized by significant difficulties in social interaction, alongside restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported.[1][2]”
These are all great and helpful definitions and helpful websites, but the problem with things like Wikipedia, or WebMD or even the Mayo Clinic’s website is that they are from a CLINICAL standpoint. And those are good, but don’t really give us much of a reference to apply it to people we know or to ourselves.
I know that I hadn’t even the faintest inkling that I might have it until I 2011. I probably still wouldn’t have had any inkling had my parents not been watching a TV show called ‘Parenthood’. On that show, one of the characters was a child who has severe Asperger’s Syndrome, and my parents saw his behavior and a few things clicked in their brains: Wait a minute, JO acted like that! SHE does that! Oh my goodness, Jo did that when she was in grade school! And at dinner last night!
Here’s the clip that made them both decide that Asperger’s was something that we as a family had to look into for me.
The character portrayed, Max, has a severe case of Asperger’s. Not every ‘Aspie’ will show those signs quite as dramatically, but damn near every one of us have noticeable quirks and habits that often get dismissed by family or the friends we DO manage to make as ‘Just how they are’.
(Time for a bit of a tangent, though it is still somewhat relevant to the topic. Bear with me here, I’ll get back on track.)
Back when I was in grade school—I was in a public grade school until I reached the 3rd grade—my disorder showed itself as my being … strange. Of course, no one around me, including myself and the school guidance counselor had any real suspicion that there was something other than Attention Deficit Disorder (ADD), which I was wrongly diagnosed with at age 5. (Note about that: Even if your child improves in performance on Ritalin, keep in mind that ANYONE performs better when they’re on speed. Just saying. ADD/ADHD is severely overdiagnosed.)
Because of how strange I was, the other children tormented me mercilessly, driving me to cry myself to sleep every night and even beg my mother not to make me go in every day. I didn’t and still don’t mind schoolwork, it’s PEOPLE I have problems with.
Also because of how strange I was and the extent of the bullying I was enduring (One of my classmates once threatened to put out my eyes with a thumbtack if I did not move to another lunchroom table, for an example.) and the stress it was giving me, I was taken to child psychologists. They were unable to determine anything other than that I was severely depressed from the torment.
My mother is my hero, and this was one of the many reasons. Rather than follow these quacks’ advice and putting me—her 8 year old—on antidepressant drugs, she decided that she would rather pull me from public schooling and educate me at home than simply medicating me and forever implying that it wasn’t anyone’s fault but mine for the torture I went through every day.
It was the smartest thing she could have ever done for me. I never like to consider what I would’ve ended up as had she left me in public school. Back then, Asperger’s Syndrome didn’t really exist.
Fast forward to 2012, and not only is Asperger’s a real diagnosis, it’s a reality for thousands of people. And more is learned about it, and more who were wrongly diagnosed with other disorders now have real answers.
(See? I can stay on topic! …Sort of.)
The rant up there, where I sort of skewed off topic and ran alongside it for a few paragraphs? That’s something that I do in real life. I’ll be talking about something, and then I’ll remember a fact, an experience or a story that is IN SOME WAY related to the initial topic, but still a bit out there. That is something that I’ve learned many other Aspies do frequently.
There are many behavioral tics that you might notice in someone who has Asperger’s, to various degrees of oddity and intensity.
From WebMD.com, with my interpretation/relation in parentheses:
The symptoms of Asperger's syndrome vary and can range from mild to severe. Common symptoms include:
- Problems with social skills: Children with Asperger's syndrome generally have difficulty interacting with others and often are awkward in social situations. They generally do not make friends easily. They have difficulty initiating and maintaining conversation.
- (We WANT to make friends. We do! The problem is that most people tend to be able to sense that we have something not quite right with us, especially when we get anxious or intimidated by a conversation. I know when I get defensive, I start repeating any facts I can recall about the topic as a way to try and mask my discomfort.)
- Eccentric or repetitive behaviors: Children with this condition may develop odd, repetitive movements, such as hand wringing or finger twisting.
- (I nearly ALWAYS have to be chewing on something. Be it chewing gum or plastic drinking straws.)
- Unusual preoccupations or rituals: A child with Asperger's syndrome may develop rituals that he or she refuses to alter, such as getting dressed in a specific order.
- (At home, if I’m not the one who empties the dishwasher, I will get very aggravated and stressed if the dishes are not put away in the exact order that I do it, because in my mind if the plates are not stacked according to weight/size, they will break and shatter when they’re taken out of the cupboard.)
- Communication difficulties: People with Asperger's syndrome may not make eye contact when speaking with someone. They may have trouble using facial expressions and gestures, and understanding body language. They also tend to have problems understanding language in context.
- (Eye contact makes me VERY uncomfortable. If I respect a person or am friends with them, I will FORCE eye contact as a way to try and show that I am listening and paying attention to what they’re saying. As for the ‘understanding language in context’, I take things far too literally very often. The same goes for things like sarcasm or some jokes.)
- Limited range of interests: A child with Asperger's syndrome may develop an intense, almost obsessive, interest in a few areas, such as sports schedules, weather, or maps.
- (This can and has caused problems for me with education. If I’m not interested in a subject, I simply won’t learn it. This has gotten better for me as I’ve progressed through grade school, vocational school and college, but it presents severe difficulty for those who show this trait more strongly than I do. For me? If I’m interested in something I will often research it and research it until I’m damn near an expert on it.)
- Coordination problems: The movements of children with Asperger's syndrome may seem clumsy or awkward.
- (This is something that is far more noticeable to my family than me, I personally don’t notice any particular clumsiness… though my balance is sometimes hard to maintain. >.>)
- Skilled or talented: Many children with Asperger's syndrome are exceptionally talented or skilled in a particular area, such as music or math.
- (This kind of translates into the ‘limited range of interests’ category for me. I deeply enjoy writing and roleplaying, so I have developed talent for both. Creating worlds and people are a passion.)
I have an ENDLESS amount of quirks and tics I had no idea were part of this disorder until I started researching while waiting for my next neuropsychology appointment to roll around. In fact, during my research I began to have some anxiety attacks because most of my personality seemed to be intermingled with a mental disorder, and that just couldn’t be reconciled in my head for the longest time. I kept trying to separate out what was ‘me’ and what was ‘the asperger’s’. This was a futile effort, because there is no separating the disorder from my personality, because the disorder is PART of the personality. Coming to terms with that was one of the toughest things to adjust to.
I'm glad I did adjust to it, because now I can better understand which of my behavioral tics are things I CAN control, things I can learn not to do... and things I CAN'T control or change about myself. I NEVER try to use my disorder as an excuse for my bad behavior. I try to have it be an explanation, and a reason for me to TRY and improve. I never stop trying.
A few of these tics and quirks are listed below. Not every ‘Aspie’ will have these, and I don’t have some of the same tics that others do, or to the same intensity. My case is mild-moderate, but it’s still enough that it can interfere with my life.
· Memory – I retain facts very VERY well. I’ve been dubbed ‘Jo-Kipedia’ in my house by my younger brother because of the plethora of facts ranging from mundane to amazing that I can recall and share at any moment should a proper trigger come along. Other things? I don’t recall what I was told five seconds before. Durnit.
· OCD – While it isn’t full blown obsessive compulsive disorder, I do have many obsessive-compulsive tics that can either be a big help—the nurses I worked with at clinical training loved me because when I got bored I’d organize their office supply drawers—or it can be a big pain in my fat, white chick butt. (Not being able to let myself sleep until I obtain the next level on a game. Or if I get a depressing thought pattern in my head, I can’t let it go until something significant jolts me out of it. Or when I get a craving for a particular food, my mind will NOT let go of it until that food is obtained no matter how hard I try.) This will also make me repeat myself, repeat stories and even sometimes I will repeat a word /sentence I had just said a few times under my breath.
· Food –There are certain foods that while I LOOOOVE the flavor of them… I cannot force myself to eat them because I loathe the way they feel against my teeth, tongue or going down my throat. Hamburger and onions are the worst. And heaven help my family if they get me the wrong flavor of something I like, the wrong brand, the wrong size, the wrong color, etc. If it isn’t the one that I picked out, it isn’t going to work and I will sulk.
· Routine – Oh man, I HATE drastic change to my life. Little things I can usually shake, though I may complain profusely about it, but anything that alters how I live terrifies me and will send me into anxiety attacks and tears. College after high school? AUGH. Vocational school after college? AUGH! Being asked to stop by the post office on my way to bible study when usually I just ride with my family? NOPENOPENOPENOPE—
· Social Situations – I’ve mentioned before in this article that I really like making friends. It’s also a source of sever anxiety for me because even when I was doing things outside the computer such as Girl Scouts, volunteering at the hospital and such, I found myself wanting to come up with excuses as to why I couldn’t go. Because I didn’t want to face going in and talking to people or interacting in any way. I crave social interaction on one hand, but on the other I fear it more than anything except for spiders. I want friends, but I’m terrified of initiating conversation.
· Decisions – Oh good LORD, I usually cannot make ANY decision, even if I KNOW my choice would probably be the best one, without consulting at least one person. This goes triple for any choice involving purchases. And quadruple if those purchases are with my own money. This difficulty can range from mild to ‘I CAN’T MAKE THIS DECISION UNLESS YOU GIVE ME YOUR INPUT DAMMIT!’
· Humor – I am capable of humor! …Just not often other folks’ brand of it. I can get a lot of jokes, though sometimes I will take a joke far too literally and might even get offended by it. Sarcasm is hard for me sometimes, so I will often laugh if others seem to think it’s funny, even if the joke goes over my head.
· Right/Wrong – This isn’t really a MORAL right or wrong, it’s ‘this is how it is, this is now it is not’ regarding things like rules, colors, foods, what is a pet and what is not. I’ll not be able to see the grey area of compromise, nor will I usually be able to admit I see someone else’s side of it. I might logically, but I won’t be able to admit it, because in my head, they’re challenging how it IS and how it is NOT.
· Perception – I’ll often take things differently than others do because I don’t see them the same way. An example is that I’ll ask my brother to do something how I think is nicely—I’ll say please, and keep my tone to one that to MY ears is neutral—and then I’ll get really pissed if he doesn’t respond nicely.
· Guilt – Even if LOGICALLY I know that something happening isn’t my fault—say my guild leader gets angry and snaps over our voice chat at the guild in general or at someone in particular—I will feel like I personally was responsible for that anger, even if it isn’t directed at me. I don’t take criticism well for this same reason, because I will feel like my faults are something that make me a bad person. Not always, but when I’m feeling low or anxious it gets pretty bad.
· Intelligence – I know that I am a smart person. I get exceptionally good grades in school, and I am recognized for it. However, this is only really extending to book smarts. I find it very hard to put things I learn into practice in the real world, and this can and has hindered my ability to find and keep employment. I also find that I am far better at taking written tests than I am at taking any sort of application test: Example? Sure! :D After I graduated high school I went into a vocational school, learning how to be a CNA / PCT. (Certified Nurse’s Assistant/Patient Care Technician) While in the classroom, I excelled. When we got out to clinical training—where we went out into places like hospitals and nursing homes to practice—I would often freeze or have to be reminded of the next step because there was no written trigger to get that memory going. Give me a list of abbreviations to read? I can memorize them and recite them back after reading it once. Have me read about and practice how to miter a bed sheet corner and THEN have me try to do it in real life? Nopenopenope.
· Tolerance – I tell a lot of people preemptively that if I encounter something or someone I perceive as ‘stupid’ or ‘stupidity’, I will say so. Even if I KNOW I should keep my mouth shut, and I should just let the thought go… I won’t be able to keep my big mouth shut. This goes for most things, actually. Keeping myself quiet, especially when I get excited or angry or upset, is nearly impossible for me. This also goes for people I don’t like. I find it hard to pretend or put on a smiley face for those I have no respect for or heavily dislike. I’ve even had to be sequestered into other rooms to avoid blowing up at people who I am angry with.
Like I said, there is an ENDLESS list. I can’t hope to put them all down, but those are some that I deal with every single day, be it with my family or with friends or even at school/work. It isn’t easy to deal with, and so far since I am unemployed and insurance-less, I have yet to get therapy for this disorder and the ways it makes my life difficult. I live every day, sometimes feeling like I am a prisoner in my own mind as I go through every day. But I have a lot of comfort given to me by KNOWING that many of these flaws in my personality aren’t because I’m a terrible person. It’s because I am a person with a disorder that I have to work to overcome. It’s something that means I can stop beating myself up about not being ABLE to change some of these things… but maybe I can learn how to work around them.
Getting a diagnosis of Asperger’s or a related disorder doesn’t make it disappear. It doesn’t excuse acting like a jerk, it doesn’t excuse using it AS an excuse for bad behavior. It doesn’t give you license to give up and let it rule you. And it certainly doesn’t mean you’re retarded, or crazy, or stupid.
It means you are special.
You have more to overcome than the average person, you have talents for things that other people don’t.
You might not be able to look them in the eye, but that doesn’t mean you can’t love someone just as deeply as they can love you, if not deeper and with a loyalty so fierce it overlooks flaws.
It may mean that you can’t work in jobs like customer service, but you CAN work at things where where attention to detail is crucial and organization is key.
It means that you see things in a more literal way, and while your humor might not be for everyone, there are a few people who will cherish every joke you make because they wouldn’t have thought of it.
If you even for a minute suspect that you or someone you know and love have Asperger's Syndrome, or anything similar to it? Say so, speak up. If you think you might have it? Talk to a friend who has it, and see what they think.
A dear friend of mine, Michael's his name, came to me recently after I told him about my diagnosis. I had related my surprise at being diagnosed and all the quirks and behaviors that had led us to get me diagnosed... and Michael began asking me questions that were at first seeming curious about the disorder.
As our conversations progressed, he revealed to me that he wasn't asking just because he was curious and wanted to learn more about the disorder. He wanted to know because while he'd had friends who have it before, and been around it... he'd never thought that he might have it too.
We began discussing it more and more, and I began relating to him what my doctors and my family had told me as I went through the process of being tested and then diagnosed. I began giving him links to websites and support groups that discuss it too, and he and I both are very confident that he has it. And I strongly--STRONGLY--recommended that he get himself tested at his first opportunity.
As I said in the start of this post, I am not a doctor. I am not a psychologist or a psychologist or even a neuropsychologist. But I AM a person who is living with this disorder day in and day out. I know how I feel with it, I know what the signs and symptoms are. I am always learning, and I am always trying to help those who are also living with it. And all I can hope for Michael and anyone else who reads this blog is that it helps. That it either gives some comfort, or gives answers. Below are links I've used for research and a support group on Facebook that I am a member of. I hope above all that this has been informative and helpful.
