Inside the mind of teen girl with Asperger’s syndrome

Andy C

Well-Known Member
My wife sent me this long email yesterday. It was from her high school friends 16 year old daughter. She has
Asperger’s Syndrome and the below is her well written story about her struggles with daily life. She is a Christian, but did not mention this in her lengthy story below. She is only 16 years old. If you know someone who has this syndrome, this may help to understand a little bit about how they respond to daily activities.
Well worth the time to read this.

Inside My Mind



I’ve been wanting to write something like this for a long time. I have Asperger’s Syndrome, which is a disorder on the autism spectrum. I also have been diagnosed with a Generalized Anxiety Disorder (GAD) and Pervasive Development Disorder Not Otherwise Specified (PDD-NOS). This means that my brain works a little differently. Not many people even know what Asperger’s is. They don’t understand what it means or how it affects me. So I wanted to write about what it’s like for me. Let me be clear- I don’t want people to pity me. I don’t want people to walk on eggshells or treat me any differently. I simply want people to understand. If you look up “teenage girl Asperger’s” you can find a thousand posts by moms about their daughters or by scientists discussing the manifestation of Asperger’s in teenage girls. But what you can’t find is a firsthand account. What you can’t find is an article about what it’s like to live it every day. Being on the spectrum already puts you in the minority, but being a girl on the spectrum puts you in the minority among the minority. Especially if you’re the kind of girl that doesn’t seem to have any outward problems, that doesn’t seem to have anything “wrong” with her. The kind of girl that doesn’t seem autistic. I want to give people a look into my world, and I want to try to give comfort and hope and a voice to other people struggling with similar things. That being said, I’d like to start with this:

4 things I wish everyone knew about having Asperger’s (at least for me):
1. It’s ok to talk about it! It’s ok to ask me about it! It’s ok to send me a text and ask me if I’m alright because I seemed really upset today. The more you acknowledge it and talk about it the more normal it becomes. That’s really what I want. I want it to just be a normal thing, because that’s what it is for me. But I’m afraid to talk about it. I’m afraid to bring it up in casual conversation because the last thing I want to do is make people uncomfortable.
2. Please don’t be that person. “But you seem so normal- I NEVER would have guessed!” “But you’re not awkward/weird/shy/etc.” “But you’re really good with people.” “Don’t label yourself.”
3. For everything you can see, there are a million other things you don’t see. You don’t see me panicking and in tears on the way to my first ever soccer practice because I’m so anxious that nobody will like me and the shin guards are uncomfortable and the socks bunch up and everything is wrong and what if I have the wrong clothes for soccer and what if I’m terrible and they all laugh at me? You don’t see me screaming and crying and basically losing my mind over the B I got on a test. You don’t see me come home from a trip or social event and curl up in bed, emotionally exhausted. You don’t see it because I work hard for it to stay unseen, and that’s the way I like it. But just remember you never know what another person is going through.
4. If you’ve met one person with and autism spectrum disorder, you’ve met one person with an autism spectrum disorder. We are all different. We are all unique. And we’re all just people with a slightly different way of seeing the world.

Disclaimer: What follows is not a scientific description of the symptoms of Asperger’s, anxiety, or PDD-NOS. They are simply my experiences. I’ve divided them into categories in a (probably futile) attempt to make this more coherent.

Sensory stuff
First of all I want to say that as far as sensory issues go I have it pretty easy. I can tolerate almost anything. So if you see me wearing socks the correct way or erasing an entire paragraph on a government test, it’s because I’ve learned how to tolerate things quite well. That said, here are some of my sensory quirks.

1.Touch/ feeling
The feeling of the little line in socks where the sock was sewn together rubbing against my toes is enough to drive me batty, especially when I first put them on. Most of the time I turn my socks inside out, and now I have 3 pairs of these awesome “seamless socks” that I LOVE.
Jeans used to be an issue for me. I remember having a meltdown in third grade getting ready for school because my jeans didn’t fit right. In gymnastics I avoided having to put jeans on after practice at all costs. The feeling of putting jeans on over my chalk-covered legs made me so squirmy and uncomfortable. Now the idea of having to change into jeans after a soccer game when I’m all sweaty or anything like that makes me tense up. And I don’t like putting jeans on right after I shower either.
I hate having to erase things (and really writing with pencils in general can bother me under certain circumstances). I can feel the eraser rubbing on the paper and it makes that scrape-y feeling and then it’s just this grey mess because it never erases all the way and the paper is dry and the eraser is dry and eraser bits get everywhere (*shudders*). I prefer to type or write in pen because pens are smooth so it doesn’t bother me as much. Plus if I make a mistake in pen I can just cross it out.

2. Physical touch
Physical touch was an issue for me, and it took me a long time (and some very hug-y friends) to work through it. I’ve gotten loads better with hugs over the years. I started regularly initiating hugs with a select few people over the last year or two, and now I will initiate hugs with most people I’m comfortable with. As for receiving hugs, I can tolerate hugs from just about anyone, and I rarely go stiff as a board like I used to do. But as soon as I get anxious or go into overload my personal space bubble expands. This can be problematic when hugs are most people’s go-to comfort technique.

3. Sound
I’m a little extra sensitive to loud noises. Crowded, noisy rooms can be a stressor for me. It kind of depends though, because sometimes I can tolerate high noise levels quite well. I hate sudden loud noises, such as balloons popping. In gymnastics, I used to flinch every time somebody hit the springboard.

4. Sensory “stims” (self-stimulatory behavior)
When I’m in a store I love to feel the jewelry, especially the long necklaces with lots of beads. I love rubbing smooth things like marbles in my hand. Right now I have a lucky marble that I take with me sometimes when I go places that I play with it if I’m bored/jittery/anxious. I like the feeling of a bunch of small objects- like a bowl of skittles or a tub of beads or the corn pits at pumpkin patches. I can play with stuff like that for hours. I like to have a rubber band on my wrist so I can twirl it on my finger. I also pull at them or wrap them around my fingers when I’m bored/nervous. As far as physical “stimming” goes, I tend to rock back and forth if I get anxious or bored (and sometimes if I get really really happy). That one can be really embarrassing and I try to avoid doing it in public.

5. Emotions
I experience everything very intensely- joy, pain, fear, sound, color, compassion, empathy- which allows me to see the world in a wonderfully unique way, but it also means that I go into “overload” very easily. It is very easy for me to get overwhelmed with my emotions. This tends to lead to…

Meltdowns/ shutdowns
Because I’m on the autism spectrum sometimes I have meltdowns. I have them more often when I’m more on edge-which can happen when I’m going through a rough time- if I’m tired, if something doesn’t go according to plan, or if I’m really stressed out. Those are my most common meltdown risk factors. When things are good a noticeable meltdown might happen a couple of times a month and even then they are usually quite minimal. But when I’m having issues with my anxiety, it makes a lot of my autistic type behaviors worse and triggered much more easily so that it doesn’t take much to push me into a meltdown. I have meltdowns classified into two broad types, shutdowns and actual “meltdowns.”
1) A shutdown is more introverted and closed off. This one happens if I go into sensory overload or I’m anxious/ overwhelmed in public (or if I’m anxious at home but without any specific trigger). I kind of just close myself off and want to block out everything. So really there are two types of shutdowns: anxiety triggered ones that are really more like mini internal meltdowns and sensory overload shutdowns which are calmer and kind of act as a battery recharge (although the two types can overlap a bit). I usually need a bit of sensory shutdown time after particularly stressful social events, school, or youth trips. It helps during shutdowns if I’m in a dark, small space. A lot of times I’ll rock back and forth, which is really embarrassing. Shutdowns range between just needing a minute alone to squeezing myself into a closet rocking really hard for an hour depending on how overloaded I am.

2) Meltdowns are awful. I’d take a shutdown over a meltdown any day. Meltdowns have specific triggers (such as a bad grade or mean comment), but are much more likely to happen when I’m tired/stressed/ overloaded/anxious etc. It’s a very verbal and extroverted reaction and basically looks like a toddler throwing a tantrum. I divide them into two types: partial or mini meltdowns and total meltdowns. A partial meltdown is kind of like the beginning stages of a meltdown. It’s a pretty extroverted reaction but I’m still mostly under control. A good example would be the other day when I found out my class played Jeopardy on a day I wasn’t in class. I made it funny, pretending to be mad at my teacher, and I wasn’t REALLY upset but I did get kind of fixated on it. My friend and I were eating lunch afterwards and I kept bringing it up. I just couldn’t help it. It took me the entire lunch period to get myself over it and reorient myself. So that would be a really small meltdwon. Then as I get closer and closer to a total meltdown everything becomes much more obvious and I become less and less in control. That’s what a total meltdown is- a complete loss of control. I can sometimes head meltdowns off or keep them from getting too bad but once a meltdown gets to the point of total meltdown there’s nothing to do but try to minimize damage and get back under control as soon as possible. It really feels like you don’t have control over your own body anymore. The emotions are so strong you feel like you might burst and it’s so intense and you just want to run but you can’t. It’s like everything is inside of you and you can’t get it out. When they get that bad the only thing I can do is scream and dig my nails into my legs. Then I ride it out and wait until it’s over. Even just thinking about it my body tenses up. It’s the worst, most terrifying feeling in the world. I’ve actually become so out of control that I was nearly hospitalized. We were halfway to the hospital before I finally managed to convince my mom to take me home. Meltdowns are usually followed by a shutdown of equal proportion. So after big meltdowns I curl up in the smallest, darkest space I can find and plug in headphones to try to block out the world. It’s best when meltdowns happen in the evening because then I can just go to bed and sleep it off.
Both meltdowns and shutdowns (but especially meltdowns) are mortifying. I do my absolute best to keep all of it at home but every once in a while it spills over a little bit. One example is that soccer games have become an anxiety trigger lately and I’ve had to come off the field three or four times this season because I was going into shutdown mode. I’ll just sit down next to the bench and bury my face in my hands to try to block everything out until I’ve calmed down enough. The whole thing is really embarrassing. Meltdowns definitely put my self-esteem at a low point. Now that I understand them a bit more it’s not as bad, but especially when I was younger I didn’t understand why I was such a bad kid! And why I was throwing fits like a two year old even though I was a teenager! And what if my friends could see me? Would they still want to be my friend if they could see me like that? Sometimes I still wonder about that one.

Anxiety
Anxiety definitely goes hand in hand with being on the spectrum. A lot of things that might not bother a “normal” person with anxiety issues can put me on edge. And when my anxiety is up, a lot of the negative “autistic” behaviors get worse and more pronounced. I get overwhelmed much more easily and shutdown/meltdown much more frequently and easily. For example, on a normal day I can handle the fact that we are out of my favorite type of waffles. I may be upset for a minute or two, but then I reset my expectations and switch to yogurt and granola. If I’m already on edge and going through a rough time, though, not having waffles can be enough to send me into a complete meltdown. I remember the worst day of my life started when I had a meltdown because I was working on a lighthouse puzzle and my mom wanted me to stop and do math. It was the stressor of 1) having to stop in the middle of a project, 2) doing math, which just generally frustrates me, and 3) knowing how far behind I was in math and getting stressed out about that. Normally I can deal with those feelings in a mostly socially acceptable manner, but since I was depressed and anxious and generally didn’t want to do anything, it triggered a meltdown that quickly spiraled out of control. Even during the good times, anxiety is something I deal with on a daily basis. Medication has helped me a lot. Some of my worst everyday stressors are food, decision making, social events, soccer games, keeping up with school work, loud crowded places, and horseback riding. Some of them, like social events, soccer games, and horseback riding, can cause me anxiety even though they are activities I really enjoy, and it can be a fight to keep anxiety from holding me back or preventing me from doing the things I love. Another huge stressor for me is stomachaches. This is actually kind of ironic because that’s one of my main anxiety symptoms. Starting in third grade, I had a deathly fear of throwing up. After that I started having stomachaches at night all the time, usually 3-5 night a week. I would start to have a stomachache and then work myself into a panic thinking I was going to throw up. It took me years to realize that it was my anxiety that caused the stomachaches in the first place. I would get home after a day of school followed straight by gymnastics practice, so laying in bed before I fell asleep was the first time all day I was really alone with my own mind. I would start to get anxious about something, which would trigger a stomachache, which would make me anxious, which would make me feel even more sick, which would send me into a panic, and the cycle would just go on and on. I’ve worked through my fear of throwing up to where it no longer sends me into a paralyzing, all-consuming panic, but it is still one of my worst fears.

Decision making
Making decisions is a nightmare for me. It can be anything from trying to figure out which college I want to attend to trying to decide what color socks to put on in the morning. It’s a quite normal for me to run around yelling “A or B?” at my family members to try to decide on something. If it’s a big decision, I make lists. I’ve been known to stay at a store for over an hour trying to decide on something. I get stressed super easily when making decisions, and adding a time constraint (such as a closing store) is enough to make me work myself into a frenzy. I try to make it funny, and most of my friends think it’s comical how incapable I am at making decisions. But when I’m at Steel City Pops trying to decide on a flavor from a list of 20, it’s anything but funny for me. I may be joking about it but I’m panicking inside- panicking about making a decision and panicking about not being able to and having a mini meltdown and embarrassing myself in front of my friends. So that’s always a big challenge for me.

Obsessions/fixations
Although I have improved a lot in my ability to be flexible, I am a very rule and routine oriented person. I still am quite rigid on a day to day basis but am getting good at letting go of my normal “rules” for trips (like when I went to Haiti). But even this points to my extremely black and white pattern of thinking- either everything is different and there are no rules, or everything is normal so I follow the rules. I was that six year old that was just appalled at the idea of having ice cream for snack because ice cream is for dessert not snack time! Actually food has always been a big issue for me.

1.Food
I hate having the same food twice in one day. Some food are exceptions, such as milk or bread. But if I have a sandwich once I don’t want to have one again. And I can’t have peanut butter or chicken or yogurt or broccoli or pasta (the list goes on) twice in a day. This has improved a lot in the last little while and now I might be halfway through dinner before it occurs to me that I’m having chicken twice. Even then it bothers me for a second but I can make myself get over it. I still like to plan meals out ahead of time though, and I avoid having the same thing twice if possible. Every day before lunch I ask my dad what is for dinner and I get very stressed out if he doesn’t have an answer. Oddly enough as much as I hate having the same thing twice in one day I don’t mind eating the same things everyday. I almost always have a particular brand of waffle with a banana and peanut butter for breakfast. I had yogurt with granola almost every day for an entire summer two years ago. Before that it was an English muffin with peanut butter and half of an apple. Now I can rotate between acceptable breakfasts if we are out of something but I prefer my usual breakfast. My mom jokes that we need to buy stock in Vans Protein Waffles. I’m also almost obsessively healthy. This can cause problems sometimes. But again, I’ve gotten much better. Still, my family gasps and fake cheers if I tell them I’ve had peanut butter twice in one day (haha).

2. Schedules/routines
I do not do well with the unexpected. If I plan for something to go a certain way and it doesn’t, I have an EXTREMELY hard time adjusting. For example, the other day my friend came over before a soccer game. *note: I am even more particular about food before games than I normally am about food*. For once I hadn’t already planned out my lunch in detail. So we walked in the kitchen and look around. I decided I wanted a sandwich. At which point I discovered we were out of turkey meat. At which point I started to lose it. Trying to make it at least slightly funny (because my friend was standing RIGHT THERE) I lamented about the lack of turkey and teased my mom about eating it all. Then, because my friend already knew about at least part of my crazy, I told her I was going to pace around the kitchen for a minute to reorient myself. And she let me. I finally decided on something else, but it took a few minutes of pacing and internal freaking out, and I was quite embarrassed for a while afterwards. A few weeks ago I had an awful meltdown because I wanted it to be a lazy day for my mom, sis, and I (dad was gone) and sis decided to do her assigned chores that day instead of the day after. I completely lost it. All I wanted was a lazy day and her doing chores would ruin the vibe in the house! It sounds stupid now but I can still feel how much it upset me. Just like with food though, I can cope remarkably well on mission trips/youth trips/soccer tournament because I set myself up beforehand. When I get home though, there is a mandatory post-trip decompression period because having to adjust and be social and stuff for that long takes a lot out of me. Usually I come home, eat, shower, crawl into bed, and watch movies by myself for a few hours before I’m even ready to interact with my family.

Perception
I see things differently from most other people. I think very logically, and things very are black and white for me. I’m grateful beyond words to my mom for teaching my to consider how other people are feeling/thinking and always making me consider both sides of the story. Now I realize that most things aren’t black and white but a shade of grey. My black and white thinking also contributes to my “99 is a B and a B is an F” mentality about grades. I’m still working on not having a come apart every time I get a 90 or an 87 on a test.
I have trouble interpreting body language and voice inflection/tone of voice. Sarcasm is a big issue for me. It takes me a while of being around a person to come to understand when they are joking or not. I remember one of my soccer teammates started kind of messing with me at practice (in a nice, friendly teasing way) and it took me a week or two to realize that A) she was joking and B) this was her way of showing that we were friends. Even the other day my friend asked me a question sarcastically and I gave a literal reply, at which point she looked at me and said “sarcasm” and I was like “oh drat”.

Empathy

This is a big one. People think that people on the spectrum don’t have empathy. I don’t think that’s true. We just have a different sort of empathy. For me, I can’t instinctively put myself in other people’s shoes or anticipate their actions. If I have not experienced something I have a very difficult time imagining what it would be like. The way I relate to people is by relating it to something I’m familiar with, especially if I can relate it back to my own experience (so for me the older I get the more I am able to empathize with others). I can think about a friend having a panic attack, and even though I have never had a panic attack, I can think about times I’ve felt very anxious/dizzy/sick and use that to imagine what she might experience. So I can’t fully imagine what it is like but I can try to put myself in her shoes and think about how that would make me feel if I were her. I’m constantly trying to make connections with things and find patterns (but that is another section altogether). This inability to instinctively “get” what other people are going through is a reason I am almost obsessed with other people’s stories. I wish I had a sign on my head that said “come tell me about your struggles and triumphs and feelings and fears”. It reminds me of a quote I once saw, “She was lost in her longing to understand.” And that’s how I feel sometimes. I constantly want to get in people’s heads and understand how they feel and what they are thinking. The idea that I will live my entire life and no matter where I go I will always do it within the confines of my own perception is very frustrating to me. My mom and I spend a lot of time discussing people and the things they do to help me understand, so now I actually have a lot of understanding and compassion and empathy.

Friends
When I was little, most of my friends were friends with both my sister and I, so it would be all three of us playing together. Let me just say that every single one of these friends now like my sister better. By third grade, I really started making my own friends. Whereas my sister has a tendency to make a ton of “friends” but the friendships aren’t very deep, I tend to have fewer friends that are the lasting type of friendships. When I first meet someone, it takes me a while to figure out their rhythms, how they talk and joke and use sarcasm. (The last one usually takes me the longest). It also is very, very hard for me to figure out when a relationship has transitioned from acquaintance to friend. I tend to assume people don’t want to be friends with me until overwhelmingly proven otherwise. I’ll work super hard to make friends with somebody at youth group and agonize over every word I say every time I see them only to find out three months later that they’ve considered me their friend since the beginning. And I still revert back to “they must not particularly want to be friends with me” quite easily, even if I’ve already established a level of friendship. Some of this stems from my difficulty reading social signals and some of it stems from my own insecurity about my ability to read social signals. Even as I get better at reading social signals, judging my relationship level with people is still something I struggle with a lot.

Words
When I hear a funny line in a movie or TV show, I tend to echo it. I’ll laugh at it and then repeat it right afterwards. If I’m in a movie theater I’ll do it quietly or I’ll just mouth it. Sometimes a scene from a movie or show will get “stuck in my head”. I’ll be thinking about something and the scene will come to mind and then I just HAVE to watch it. It’s the same thing with books- I’ll be thinking about part of a book and I’ll end up re-reading the whole thing. Once I saw 5 minutes of one of the Harry Potter movies during a marathon and ended up having to re-read the entire series. Another time I wanted to re-watch this one scene in an episode of a TV show so bad that I went and bought it on iTunes and then watched the scene over and over until I practically had it memorized. Another thing that happens sometimes is that I get a line or a particular feeling/setting from something stuck in my head and I go crazy until I figure out what book/movie/TV show/conversation it’s from. Another thing that I don’t even realize until people point it out to me is the way I say things. For instance instead of saying darn or crap when something goes wrong I say “drat!”. I forget that it isn’t normal to do that until people mess with me about it or start laughing when I do it.

Superpowers
Despite it’s challenges, I wouldn’t trade my crazy brain for anything! Being on the autism spectrum can be rough, but it also comes with some seriously awesome superpowers!
1. I have an almost insatiable curiosity and a deep love of learning and discovering new things. While most people are satisfied with learning about the what or the how, I find myself constantly wondering “why?”
2. I’m especially good at seeing patterns and solving problems.
3. When I get into a project of some sort, I’ll work at it for hours on end without getting distracted. Often I’ll even forget to eat/sleep/interact with other human beings when I’m immersed in doing something (such as learning a new guitar song, reading a book, writing, building with Legos, etc).
4. I’m extremely determined. When I start something, I stick to it and am very stubborn about not giving up.
5. Although the intensity at which I experience the world can be overwhelming sometimes, it’s gives me a unique and often beautiful perspective. Because “people skills” like reading facial expressions or body language don’t come naturally to me, I’m fascinated with people- why they do what they do, what they feel, their stories, their struggles. Having struggled myself has given me a deep sense of compassion and empathy for other who are struggling.

Asperger’s doesn’t define me, and neither does Generalized Anxiety Disorder or PDD-NOS. But they ARE a huge part of who I am, and they affect my life everyday. Sometimes it’s for the better, sometimes not so much. Even so, I wouldn’t trade any of it for the world because it makes me who I am and I wouldn’t ever want to change that.
 
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MarleneF

Well-Known Member
Thank you for sharing this letter. My grandson was just recently diagnosed, at the age of 3, with autism, PDD-NOS, like the above young woman.

He has some definite differences from this woman, but some of these things I am interested it showing to my son and his wife. For example, sometimes he won't eat. Could it be he is being offered the same food on the same day? I don't know, but it is certainly worth exploring.

I love my grandson to death, and he is brilliant and reading words up to a grade 6 level, having taught himself to read via an old toy flip phone and children's TV shows. But he has deficits in other areas.

I have also watched the shows with Temple Grandin and what she has accomplished in her life, despite a very hard start in life. I am going to be there for my grandson, and hopefully help his parents, who are still in a bit of denial about it, although it is pretty obvious to the rest of the family.

I pray for him that autism will not define him, either, and that he will come to a saving knowledge of Jesus Christ. That is really the most important thing of all.
 

greg64

Well-Known Member
Thanks for posting this, Andy. We suspect that one of my sons has some degree of Asperger's. He definitely fits a few of the things mentioned above, especially most of the superpowers she lists as well as having challenges with unexpected changes in schedule. I'll be sharing this with my wife.
 

Kem

Citizen
Interesting but I think these are things we all feel, perhaps to a somewhat lesser degree. Sounds like she is working nicely at self control and I applaud her for that. Self control is something we all must work on.
 
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