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Zero Tolerance

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The funny thing about my Aspergers is that it blesses (curses?) me with extreme polarity. I can remember the tiniest minutiae of information, yet I can’t remember where I put my keys. I can deal with major levels of discomfort, but I can’t handle having an itchy tag on the collar of my shirt. And while it gives me the ability to tune out things that drive me crazy, it also makes me lose my shit at the smallest provocation.

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So that’s where my keys were.

My tolerance level is practically nil for certain EXTREMELY annoying things. Recently, my daughter has begun making this really strange noise with her mouth/throat that makes me nauseous. It sounds like a pig trying to stop itself from vomiting. In fact, you know what? I can’t even describe how gross it is, so I’m going to let you experience it for yourself:

My daughter’s disgusting throat noise.

I told you so.

Now, I don’t know if this is some sort of new stim/nervous tic she has developed, but I have told her over and over again to STOP MAKING THAT GOD DAMN NOISE. But she doesn’t stop. Most likely can’t stop, but that makes no difference to me. Last night she made the noise at least ten times while we were playing Life, until finally I couldn’t take it anymore. I told her if she kept doing it, I’d make sure she wouldn’t be able to play at Life anymore. And I wasn’t talking about the board game.

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She didn’t think it was funny, either.

And it’s even funnier that as I’m writing a blog post about not having any tolerance for anything, I have a difficult time making the post exactly how I want it to be and end up throwing a tantrum over it. I can usually problem solve pretty effectively, but sometimes the problem is just so frustrating that it makes me just up and say “fuck this shit” and give up. I had some other things to talk about in this post, but I’ve kinda lost the groove after my energy-draining frustration explosion.

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This Is My Aspergers

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I have written in previous posts a little bit about the history of my Aspergers and what it was like for me growing up, but I haven’t really gotten into it in great detail yet. Every aspie is different, comes from a different background, and has a different story to tell.

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This is my Aspergers. There are many like it, but this one is mine.

I only became aware of my Asperger-ish tendencies a few years ago when my daughter was diagnosed, but the roots go back to when I was very young. When I was in preschool, I remember bouncing back and forth between friends, trying my best to connect with whoever was within proximity of me at the moment. I tried my best to mimic in order to be accepted; this works pretty well as a child, however I can remember not really having a sense of who I was. I would absorb the traits of those around me in order to blend in.

The defining moment in my young childhood came at age 6 when I was hospitalized for a severe kidney condition. I got sick on the first day of school, was rushed to the hospital, and nearly died. I was in the hospital for 6 weeks, subjected to blood draws and regular dialysis treatments. My family was devastated that I was so sick and scared of losing me.

The thing I remember most vividly is all the cool toys I had in my hospital room.

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Coming up next on Pimp My Pediatric ICU…

Granted, I was only six, so my memory of the experience shouldn’t really be picture perfect. But don’t you think it’s a little strange that I have absolutely NO memory of the horrible medical procedures that my mother tells me I had to endure, yet I can remember with great clarity the Lego kits my dad and I worked on and the inflatable Superman doll that hung in the corner during my entire stay? I think my brain decided that it wasn’t going to connect itself to what was going on, and I must have checked out and gone somewhere else mentally during the rough parts. I still use this skill to my advantage from time to time. I don’t know if the stress caused my brain to adopt an overall emotional disconnectedness – virtually “causing” my Aspergers – or if it was my aspie brain that allowed me to get through it. All I know is that the experience had a profound effect on me and my mental processes. It’s like my super hero origin story.

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Able to create soul-crushing social awkwardness in a single sentence! 

As I got older, I began to show more of what I realize now were classic autism/Aspergers traits. I memorized the bus route home from school, including street names; I even helped a substitute bus driver find the correct route on one occasion. I had a very rigid tv routine, watching my favorite cartoons every single day; I knew by heart when each was on and in which order. I would spend hours “racing” my Hotwheels cars, which actually meant lining up 30-40 of them one behind the other and moving them one at a time for a few seconds each. I would throw tantrums if I didn’t win while playing board games with my sisters. I would play ball in the living room by using a mini-bat to hit a foam ball aroud the house, completely oblvious to the risk of breaking things. I often played 2-player sports games by myself, switching between controllers to play both teams; I even kept stats and charted out seasons that I scheduled myself, long before games like Madden featured their own season modes.

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The list goes on…

I actually hid the social aspects of my Aspergers pretty well during school. With the benefit of hindsight, however, the cracks begin to show. Bullies were constantly trying to get to me, only I was so socially clueless that I didn’t even notice. Eventually, thye pretty much gave up and moved on. One of my best friends (even to this day) was with a group of kids who would brutally make fun of me on the bus. One day the other kids weren’t there, so he invited me to his house to hang out. Oblivious Aspie Me said, “Sure!” I continued with my “blending in” strategy, getting along with many types of people but never really connecting to any of them. I had a small group of close friends, but even they were distanced from me; I very rarely hung out with any of them one-on-one.

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“Thank God you guys are all here! I’m terrified of each of you individually!”

When I went to college, my isolation became official – I’m not exaggerating when I say I did not make one new friend during my four years in college. I tried a few times early on, but I just couldn’t make it work. In my mind, I had nothing in common with anybody at all. I had already figured myself as an outcast. Most of my social interaction came via the internet – where I could be whatever I wanted to be, take my time to measure my responses, and avoid the intensity of face-to-face contact. I actually met my wife over the internet during this time, and somehow she wasn’t completely turned off by my behavior when we met for the first time.

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It was slightly less awkward than this was.

At the time, it wasn’t so obvious to my parents that something was up with their son. Autism spectrum disorders weren’t featured as prominently in the news as they are nowadays. But looking back now, and with the benefit of the knowledge I gained while working to get my daughter diagnosed… it’s pretty clear. My childhood is no doubt different from the stories of other spectrum children, but I’m sure it also runs parallel to them in many ways. I worry about my daughter a lot – will she have friends? Will she be happ? Will she be successful? Looking back on my story gives me a sense of peace. If I made it this far in the face of this challenge, then the potential of my daughter is limitless.

My Autism Theory

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I’m currently reading The Panic Virus, a book that explores the history and development of the false link between autism and vaccines. It’s fascinating to see how people can develop theories about just about anything based not on data, but on their own personal perception of reality.

Then I realized I’m capable of the same exact thing.

I have tons of theories. I have a theory about how our universe is just a microscopic part of a much larger plane of existence, and that we are a much larger plane of existence for another smaller microscopic universe (and so forth). I have a theory that centers around how early human evolution still continues to shape many of our decisions inour modern day world. I have a theory on why my car’s “check engine” light is on.

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I’m pretty sure it’s the fuel injectors.

The important thing for me to mention is that they are just theories. I’m no expert on particle physics or automotive mechanincs. I have no hard evidence to base these theories on, just some observations coupled with feelings that I have. I’m not going to argue that I’m “right” in any of these cases. They are just ideas that I put forth as interesting things to think of. With that said, I have a theory on what autism is and what actually causes it.

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You’ve been warned.

My theory started growing in my mind when I started looking at my own stimming behavior – biting the skin on my fingers. There were times where I could go for quite a long time without biting, but then I’d get stressed out and tear the shit out of my fingertips. I started thinking that maybe my stimming was a hyper-intense stress reaction. Could this apply to other autistic stimming behaviors?

Another little factoid that contributed to my theory was the difference between my two children. My daughter (the aspie) was conceived using fertility treatments and hormone therapy, while my son (the NT) was conceived naturally. My daughter suffered from severe GERD as a baby, my son did not. I also noticed that a fair portion of the women my wife was in contact with from various support groups (both IVF and GERD online support groups) had children that were on the spectrum in some capacity. Where, if anywhere, does this factor in?

My mind also wandered around the fact that there seems to be a genetic component to autism spectrum disorders. The gene has not been pinpointed, but it has been shown that autism seems to run in families. Genetics are pretty straightforward – simply put, either you have a gene for a specific trait or you don’t. So why does it seems to get wishy washy when it comes to autism?

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Ok, so my theory is basically this – autism spectrum disorders are, at the core, anxiety disorders that manifest themselves into social and physical symptoms of varying severity.

Why does this make sense? Because it brings together all of the aforementioned details, quite nicely I might add.

According to my theory, autism starts at the genetic level as an inherited predisposition for abnormally heightened anxiety. Perhaps the genes that regulate stress hormones produce abnormal amounts, or perhaps the receptors for these hormones are tuned to be overly sensitive. Whatever the mechanism, these are the children who are at higher risk to develop autism.

The next step occurs during pregnancy – during early development, the child is subjected to some sort of “triggering stress.” This could come from a number of different sources – exposure to elevated maternal stress hormones in utero (possibly in reaction to fertility treatments), metabolic stress due to medications (an explanation to the perceived link between autism and vaccines), or physical stress to the child itself (chronic pain, GERD, etc.).  The triggering stress conditions the child to adjust his or her baseline level of stress higher than a neurotypical child’s baseline would be.

The symptoms of autism (most notably stimming and tantrums) are physiological responses to perceived stress. The fact that the levels of stress are extremely subjective leads to the wide range of severity of symptoms; a child with Aspergers may only be moderately affected by stress, while a child with severe autism may find the slightest stimulus to be crippling. The social aspects of autism spectrum disorders (parrotting, echolalia, isolating, flat affect) correlate with social anxiety.

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Skeptical reader is skeptical.

Autism as an axiety disorder makes some sense. It explains why treatment with anti-anxiety meds helps improve behavior. It also explains why children on the spectrum tend to function better when set routines are in place, reducing the anxiety of the unknown. I’m not sure how one would go about proving this theory to be true, nor am I sure what good proving the theory true would accomplish. Perhaps better treatment strategies could arise, approaching autism from the “stress reduction” angle that one would use when treating other anxiety disorders.

I’m curious to hear opinions on my theory, as well as any other theories that you readers may have. Fire away in the comments section!!!

Feeling Stupid

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It really is a no-win situation.

There were some issues with the bank that needed to get taken care of this morning… ok, fine, I’ll admit it. I forgot my PIN number for my bank card. As if I wasn’t already feeling stupid for the other stuff that I’m about to talk about. Thanks a lot, dickwad.

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Yes. Yes it did.

But I digress.

In order to get my PIN number reset, I had to call the bank and deal with (errrrg) customer service. This is not one of my many talents. In fact, I usually come off sounding more awkward than that friend of yours who asks you to be the best man at his wedding after his fiancee has already cheated on him with you. We’ve all been there, right?

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“So how are things going with the florist?”

So, this situation leaves me with only the following options:

A) Call the bank myself, and make a complete and utter ass of myself in the process

B) Ask my wife to do it.

Now many of you are saying, “Well, duh. If you can’t do it yourself, let you wife do it.” However, option B comes with a whole new set of problems. See, the customer service guy ALWAYS needs to confirm my identity before anything can be done. In order to do that, he needs to ask me to verify personal information. So my wife has to hand me the phone so I can talk to the customer service guy. There’s no escape for me, and now even the guy on the phone knows how big a douche I am.

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“Hey Bill! Check it out, it’s another lame ass guy who needs his wife to use the phone for him!”

Now, bless my wife, she tries to make things better by softening the blow and telling the customer service rep flat out that I “don’t like to use the phone.” It means a lot to me that she tries, but I don’t think for one second that it makes me look any more normal in the eyes of the person on the other end of the phone. They know the deal, they know what’s up.

So, inevitably, I threw a tantrum later, because I HATE feeling stupid. I only felt better after playing a car racing game with my kids and showcasing my mad skills.

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Because video games.

It is still nice to know that I have a family who cares for me – a wife who loves me enough to do the things for me that I can’t do myself, and children who will gladly have their asses handed to them on a platter so I can feel better about myself.

Let’s Get Physical

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There was one thing I was always thankful for after we got my little Aspie diagnosed – my little Aspie is a girl. Although her tantrums could be quite intense, they were more of the yelling/screaming type. I’ve heard that boys with Aspergers can have tantrums that become extremely physical, even evolving into fistfights. Luckily, K’s tantrums don’t go that far. She will scream and yell loud enough to hear on the street, but at least there are no holes in the wall in her bedroom.

It’s difficult to figure out the best way to handle a physical tantrum. When kids are smaller, it’s not that hard – usually the best course of action is to let them work it out, as long as they are safe. If their safety is compromised, physcially restraining them may be necessary. Sounds simple, but ask my wife how easy it is in real life. She had a knock-down drag out tantrum confrontation with my son the other day, and he’s not even on the spectrum.

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Imagine this, but with less smiling and more screaming and flailing limbs.

This is all great advice, but kids have this really strange tendency to get bigger. I know… how dare they, right? The problem with this is that bigger kids bring bigger tantrums. Your child is bigger and stronger; you can’t just hold him down until he exhausts himself anymore. He fights back. He throws punches. Pretty soon, you’re no longer just worried about the saftey of you child but your own as well.

The most common advice I hear about this situation is to try and give you child a place where he can physically lash out without an increased risk of injury – for lack of a better way to describe it, a “rubber room” of sorts. I’m not saying to actually build youself an isolation room, but create a space where there are no breakables and the environment is generally safe. Once you child has gotten throught the necessary explosion, then you can provide loving support. Most people advise against intervening, especially if you feel you safety is threatened. It’s most important to protect yourself; you cannot help your child if you are injured.

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Ok, kids! Time to get dressed for school!

I count myself lucky because I haven’t had to deal with this type of situation yet. Not to say that girls don’t have physical tanrtums; it’s just more common for boys to lash out than girls. But I have found out that nuerotypical boys can have tantrums that are just as strong as Aspie boys.

Good luck and be safe out there.

Triggers

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Yesterday, I sent out a semi-serious tweet about the possibility of throwing a tantrum because I didn’t get pizza for dinner. As ridiculous as that sounds, aspie tantrums can very well be triggered by something that insignificant. Perhaps something of even less importance.

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For example, not getting the Golden Goose that you found out existed only five minutes ago.

Fatigue is a very common tantrum trigger, although not so much for me – my wife will tell you otherwise, but I simply get crabby. Hunger is also a big one on the list of triggers. Specifically for people with aspergers, crowds and social events can lead to meltdowns. For those with autism, loud/unpleasant noises or sensations can cause a blow up. Then you have the triggers that are specific to each person – schedule changes, absence of a normal favorite choice, etc. I know I tend to go nuts if I can’t find something that I’m looking for right away.

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GFY, Waldo.

The importance of knowing these things is not to remove all of the triggers from the world of the Spectrumite – that’s pretty much impossible. What’s important is to know that these triggers do exist, and that a tantrum can be caused by the smallest little thing that you couldn’t even notice if you tried.

What are some of the small triggers that you have seen influence you or someone with Aspergers/Autism?

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Please fill up my comments section. It makes me feel important.

Flippin’ Out

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My wife and I know that we can usually expect an aspie explosion from our daughter on days when she has a social-heavy event. So why can’t I ever see the same thing happening with me?

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Hi there! We’re the people who will ruin your day long after you’ve dealt with us!

Today the family went on a hike through the woods with my daughter’s nature club. We had a good time, although near the end my son started getting a little tired. I honestly didn’t feel too stressed about the whole thing, but I’ll admit I didn’t feel quite “settled” during the afternoon. During the rest of the night, I felt myself getting easily irritated by every little thing – I threw a fit because I couldn’t find the correct pan to cook brownies in! I had just about had it. For lack of a better way to explain it, I was just pissed off. So I did what we often tell our daughter to do when she needs to de-stress.

I went up to my room.

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Leave me alone; tantrum in progress…

This must be what it felt like for my daughter to go to school. She’d be completely fine at school… well not completely fine, but you get the idea. She’d get through the day, get home, and have a flippin’ fit on us until we had to send her to her room before she went completely ballistic. Then the teachers would be like “We don’t see any social issues with her, she’s perfectly fine.” Yeah, tell that to the smashed broken toys that are littered around the house because my daughter couldn’t get them lined up in just the right way. I’m an adult, so I don’t end up smashing my stuff, but I can still throw tantrums. Maybe I need the same thing she does: a little time after a social gathering to decompress myself, at the very least to avoid acting like a jerk and getting everyone in my family pissed off at me.

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Yeah, I’ll be upstairs until the urge to stab me has died down.

Don’t Sweat the Incredibly Large Important Stuff

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It’s kind of funny how my brain processes stress. I don’t know if it’s my Aspieness or just the way I am, but I seem to be somewhat immune to the rising pressure of a life or death situation.

This actually comes in handy at work. In my job, one mistake can literally kill a person. Sure, there are quality checks in place to prevent this from happening, but the checks are not perfect. The fact remains – I could seriously harm or kill a person with a mistake as small as a typo. And, oh yeah, I almost forgot… in certain situations, if I don’t work quick enough, someone might die as well. So pretty much every day, lives depend on my ability to be fast and accurate with my work. Can you imagine if every time you got the wrong order at the drive through window, you ended up dead?

Now here’s the funny thing: it doesn’t bother me in the least. I actually find myself strangely energized when I’m thrusted into those types of high pressure situations. I excel, I succeed, and dare I say it… I have fun. It’s not that I don’t understand the severity of the events. I just know I’m that damn good at my job to handle even the heaviest situation.

Ironically, it’s the smaller things that tend to drive me crazy. Situations that would seem insignificant to you end up tying me in knots: if my wife sends me to the store to get a specific item and it’s sold out, if I misplace something and can’t find it, or if I start to cook something and I’m missing an ingredient. Just the other day, I threw a tantrum because I couldn’t get the Food Saver to work properly while trying to prep meat for the freezer.

IT’S THE END OF THE WORLD!!!!

But seriously… I find it fascinating that I can keep it together at work when someone’s life hangs in the balance, yet completely lose my shit in the face of freezer burn.

A Mighty Roar

It can be very difficult for parents of Autistic children to deal with, but this is a fact: tantrums are unstoppable. And in the case of children with Autism, the tantrums are SO MUCH MORE INTENSE.

If you are a parent of a child on the spectrum, I am about to tell you something you won’t want to hear: the tantrums don’t go away with age. I’m a full grown adult (sort of), and I still throw tantrums when I lose my keys.

The good news is that it’s not your fault. You may feel like you are causing the tantrums by either using discipline or holding firm to boundaries, but it’s not that. Sometimes it can be the smallest thing that sparks a tantrum. For me, it’s losing something. For someone else, it can be an uncomfortable setting (too warm/too cold/too loud/too quiet/etc.). Some kids can throw a tantrum over a broken toy. Some can go off because they didn’t get the right amount of chocolate chips on their cookie. It’s different with every Spectrumite.

So, how to deal with the tantruming child? Well, let’s start with what not to do. First, don’t tell the child to be quiet or to not be upset – this will only make the child feel alienated and “wrong” for being upset. Second – and trust me on this – do NOT let them “cry it out.” Tantruming Spectrumites very often get physical during tantrums and can cause harm to objects and themselves. If you just let them get it all out, you may end up with a broken lamp or a broken body part.

The best course of action is to hold the child tight and let them know everything is going to be okay. This is where wrestling skills come in handy. Your youngster is going to fight back; don’t take it personally. But, BE CAREFUL!!! Remember, you are trying to prevent harm, not cause it. So make sure your child can breathe and nothing is bending at any weird angles. Also, do your best to soothe. Speak in a soft voice; tell him you love him, that it’s going to be okay, or sing a lullaby she likes. Don’t expect an immediate response, but it will sink in and they will feel more confident in their bond with you. When your child (FINALLY!!!!!!) begins to calm down (AFTER 19 HOURS OF SCREAMING!!!!!), reinforce the fact that everything is okay, and s/he shouldn’t feel bad about going off.

Tantrums can be scary, especially for parents of Autistic children. But when you know how to handle them, you can get through them with at least some of your sanity intact.