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Vacation Anxiety

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So last week, my family and I went on vacation to Disney World. We drove all the way to Florida from upstate NY, which wasn’t a major deal considering I work midnights and I’m usually awake at night anyway. Then again, it was a near-24 hour drive, so yeah it kinda sucked. Sleeping in the car was no picnic with my kids singing “Let It Go” over and over again for thirteen hundred miles.

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Yes, I am fully aware that you are one with the wind and sky.

Considering my aspieness, you would think that being on vacation and messing up my normal routines would put me in a bad mood. And yes, I will admit that I end up missing my video games so much that by the end of every vacation I consider bringing my Xbox along on the next one. But it’s actually not that bad for me. I don’t mind being in a weird place because I know that the point of the trip is to experience somewhere new.

The one thing I do really need when I’m on vacation, though, is a “nothing day.” I’m fine with having lots to do on vacation; I just can’t have every moment of every day filled up with activities. If I don’t get any time to relax, then it just feels like work. And when I’m on vaca, bumming around in a cramped hotel room watching non-HD local sports and eating vending machine food is relaxing for me.

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I am so there.

So, as I said, the family and I went to Disneyworld. I don’t know if you know this, but it seems to be a very popular place to visit. My GOD was it crowded. And it was in the middle of the school year! What terrible parents these people must be, pulling their kids out of school to go to an amusement park! Excluding us, of course.  🙂

Anyway, yeah, LOTS of people. But you know what? I handled it fine. My daughter handled it fine. See, it’s not really people themselves that freak us aspies out, it’s the social interaction that goes with being around people. Most aspies are perfectly fine if they can blend in anonymously with a crowd. That’s what Disney felt like;  it felt like walking through Times Square in New York City – tons of people around, but nobody paying attention to anybody else around them. It was great! We had a great time. The kids really enjoyed the rides and stuff, and my wife and I enjoyed being able to act like kids without looking creepy.

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Shit like this don’t fly anywhere else.

The vacation was practically stress free, except for the Disney germs we all came down with when we got back home. I didn’t expect the most stressful part of my trip would be going back to work and having to talk abou my vacation with my coworkers. But that’s another post entirely.  🙂

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Autism and Bullying

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Bullying seems to be a hot topic nowadays. I’m not sure why all of a sudden EVERYBODY is all up in arms about this. It’s not like bullying is something new that kids just came up with this year, like listening to crap music like Lorde. Bullying has been around for quite a while. The first recorded use of the word “bully” occurred in 1530 (yes, I looked it up; I don’t spend all day making up fake facts for this blog, I’ll have you know), but the concept goes back way before that. There were even bullies in the Bible, for Christ’s sake.

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Jesus likes!

Because of the nature of bullying behaviors, children on the autism spectrum at at a higher risk of being victims of bullying. Bullies often single out those who are weak or socially outcast and make an example of them. It’s not always about physical violence. The main motivation is an attempt by the bully to feel superior to others and to be looked at as being in a position of power. Due to the characteristics of autism (weak sensory perception, social awkwardness,  etc.), children with autism or aspergers are juicy targets for the bully to get what he or she wants.

A parent of a child with special needs is then faced with a difficult situation. Very often, children with autism will have difficulty communitcating to the parents that they are being bullied. The emotions that come with being pushed around are hard to understand; the child may claim to feel sad, tired, or simply hide their feelings in order to avoid them. It is the parents’ job to keep an keen eye on the child’s temperment and watch for any changes that may indicate that something is wrong.

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Or just outsource the job to the Chinese.

Bullies prey on fear; they count on their targets being to afraid to report them or do anything about it. Children with autism are already scared and anxious to begin with. A bully doesn’t even have to work hard to intimidate these kids; half the job is already done for them.

Another reason why it may be hard for parents to detect when their child is being bullied is that the child may not even realize that they are being mistreated. To children with social deficits, a bully may seem like a friend. After all, it’s someone who is talking to them and giving them attention. That’s a friend, right? Doesn’t matter if that the “friend” is taking their stuff, slugging them in the arm, and calling them names behind their back. That must be what friends do!

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“Mom! Tommy and I are gonna go play ‘Get Beat Up By Tommy!’ “

Now, it’s clear that special needs children are especially vulnerable to bullying. However, all of you special needs parents shouldn’t jump up on your high horse and think your child will always and forever be free of blame when it comes to bullying. Remember all of that anxiety and fear I was talking about before? Well, a funny thing about those negative emotions – they tend to send you child’s self esteem crashing faster than Healthcare.gov.

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Obama no likes.

These drops in self esteem can lead to children with special needs becomingthe bully. If the child has trouble understanding how to address social situations, the chance of inappropriate behaviors evolving into bullying is higher. We can’t just look at our children as wonderful little angels and allow ourselves to be blind to the other side of the coin. If you don’t want you child to be bullied, you have a responsibility to make sure your child doesn’t turn into one.

It’s clear that bullying is a critical subject that should be discussed with our children. We need to teach our children to be respectful of one another no matter what the situation. Remember, kids grow up to be people; the last thing you want to be responsible for is letting you kids turn into assholes when they are older.

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.

The Sensory Experience of Autism

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People on the Spectrum experience the world in a different way. The senses of someone with autism are wired in such a different way that it is almost like they are living in a different world than a neurotypical people. Different stimuli lead to different behaviors that are considered “abnormal” – imagine if everybody in the world was wearing sunglasses except for you. You would think that the sunlight was too bright, and everyone else would just think you are crazy.

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They would also be so much more cooler than you.

That’s what what autism is like… sort of. A child on the spectrum will react to loud noises that are not quite so loud to everyone else. A person with Aspergers will tune out everything in the room except for the smallest little thing that has grabbed his or her attention, simply because it is not so small to him or her. It’s not only that our reactions are different; our perceptions are altered, as well.

I went to the orthopedist the other day to address some pain issues I’ve been having in my elbows and wrists. The doctor begins examining me and asks me if it hurts if he does this, what pain level am I at if I do that. Now, I’m lucky to have been blessed with a high tolerance for pain (possibly due to my Aspergers). In order to answer his question to get the desired result  – him actually giving a fuck about my arm hurting and doing something about it – I need to do an “Aspie-to-NT Pain Conversion” calculation. Simply put, I lie and say my pain is worse than it really is.

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“… then we multiply by the indifference constant to overcome the “Who Gives a Shit” factor…”

But the skewing doesn’t just go one way. If the doctor asked me on a scale of 1 to 10 how big of an annoyance having a fold in my sock is, I’d answer “OH MY GOD, YOU HAVE NO IDEA WHAT HELL I’M LIVING IN AT THIS MOMENT!!!!” So it’s not like I’m completely numb in one direction or overly sensitive in the other; it swings both ways. My stimulus filter is tuned differently than most other people’s are. So I’m forced to adjust, and as I grow older I learn the ways to adjust the way I see and feel the world to fit closer to what would be considered”normal.”

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!!!

What Does Aspergers Feel Like?

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It’s a phrase I hear from often at home. It’s a phrase I’ve used myself from time to time. When you hear it, you know exactly what it means.

“I’m feeling a bit aspie today.”

Yeah, totally. We all have days like that. But what does that really mean? What does Aspergers feel like?

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“I LOVE it when he uses the title of the post in the post!!!”

Aspergers is a unique condition due to the fact that no two people who have Aspergers are the same; there are very few unifying symptoms. What one Aspie experiences will not be felt by another, and vice versa. So it may seem pretentious of me to write a blog post about how Aspergers feels. To avoid coming off sounding like a complete asshole, I’ll make this post about how Aspergers feels to me.

To me, Aspergers feels:

Awkward – this is pretty much the default, base line feeling of Aspergers. It always seems like everyone else understands what’s going on except for me. I’m doing my best to keep up, but I seem to do everything the wrong way. And everyone’s looking at me because of it.

Stressful – I’m often very aware of the fact that I’m not quite with it, that I’m a puzzle piece that doesn’t quite fit into its space. I want to be able to follow along, to get with the beat, to approach some sort of normalcy. But it’s not easy. It takes effort. And when that effort fails, I get stressed that I’ll never be what I want to be.

Carefree – Then again, Aspergers gives me the ability to be blissfully ignorant of the annoyance I’m causing other people in some situations. As long as I’m feeling good and having fun, I can completely block out everyone and not even give a shit about being the weirdest person in the room. It’s these times when Aspergers becomes – dare I say it – fun!

Powerful – Aspergers gives me the ability to do things that most neurotypical people are not capable of. I’m able to think through most situations rationally, setting aside any emotions I may have and avoiding the biases that come with them. I’m able to process information faster than most people, which gives me the illusion of looking smarter – when in reality, my brain is simply more efficient at learning. I also have the ability to burden myself with painful situations and push through without falling apart mentally.

Weak – On the other hand, sometimes the smallest annoyance can seem like the biggest pain I could ever experience. A fold in my sock becomes an immediate emergency. I can’t cope with simple everyday situations that almost everybody else shrugs their shoulders at and moves on. I end up melting down over the smallest thing that doesn’t go my way.

Alone – I haven’t made any new friends since I graduated from high school. I don’t know how. The sad truth is this: I really DO want friends. People with Aspergers (and autism as well) may seem antisocial, but it’s not because we don’t want to be social. It’s because we have no fucking clue how to be social, so we’d rather just avoid the situation instead of failing miserably.

Loved – I can be such a pain to deal with, I know for sure that the people in my life truly do love me and care about me. Otherwise, they wouldn’t bother putting them through the shit they go through to be connected to me. It’s not an easy thing to love an Aspie, or even to be good friends with one. There’s a lot of take and sometimes not that much give. But when someone gets to know me and understands that there’s a person inside who wants to care about people, soemthing magical happens… they actually like me.

Passionate – The things I’m interested in, I jump in full force. I want to know everything about it. I’m competitive, high spirited, I love knowing things, and I love being right. There’s no better feeling than being completely engrossed in a subject to the point where every new detail is a gift.

Bored – The things I’m not interested in, I couldn’t give less of the square root of a shit about. God help you if you want to have a conversation with me about something that bores me, because I’ll tune out faster than you even realize it and two days later I’ll insist that the conversation never happened. And to me, it didn’t… because I was off in my imagination doing something else that I care infinitely more about than your stupid thing.

And lastly…

To me, Aspergers feels like life. This is my life, and these are the difficulties that come with it. Everyone has things they deal with in their life, whether you are on the spectrum or neurotypical or whatever you want to call yourself. We learn to live the way we are.

My Aspergers doesn’t make me any less or any more human than anybody else. It just makes me who I am.

Light It Up Blue!

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April is Autism Awareness Month – today being World Autism Awareness Day specifically – so it’s a very special day for me and my family. I’ve decided to tweet out autism facts for the entire month because not many people are aware of exactly how strongly autism permeates our society today. Autism affects so many people that it’s hard to find someone who’s life is not touched by autism in some way.

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The signs aren’t always this obvious.

Most people choose to spread awareness through the “Light It Up Blue” movement. Support has been outstanding and overwhelming. Over 40,000 people have committed to raising awareness for autism by joining in. Many landmarks around the world have been bathed in blue light to bring attention to the cause. My wife is doing her best by turning just about any part of her body blue that will cooperate – her hair, her nails, even her toes (you can thank Raynauds for that). Not sure how blue became the color of choice, but my wife sure is happy about it.

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Some of the best things in the universe come in blue.

So I encourage you to join in and Light It Up Blue for the month of April! Let the world know that Autism is something to be embraced, not to fear or run from. Awareness is the first step towards acceptance; let’s take that first step together.

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.

Mapping Autism

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An interesting article was brought to my attention about mapping the brain’s connection signals and perhaps being able to diagnose Autism with the results. I will admit , the article was a good read. And it seems to make some sense, at least to me.

The study mentioned in the article discusses the linkages made between different parts of the brain, and the patterns of those linkages are different in the presence of different conditions (such as autism and spectrum disorders). What this means, basically, is that people with ASD have brains that are wired differently than neurotypical people. This is not earth shattering news; this has pretty much been an accepted idea for quite some time now. The importance of this study is how these connections are mapped, and how this mapping info can be used to confirm a diagnosis of autism.

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Just trust me, it can.

Currently, a diagnosis of autism is very subjective. It pretty much comes down to “you look like you have autism, you must have autism.” Uh, duh. What this mapping info gives us is a way to compare and contrast traits of an ASD brain to a neurotypical brain. Some of these differences are quite striking.

One difference the article mentions is the presence of “redundancy connections” in the ASD brain. This sounds like a good thing, but it’s not really. It allows the ASD brain to focus intense concentration on location-centric processes, but it fails when using cross-referencing skills (i.e. deciphering emotions, social interactions, etc.). Details like this in the study push me more towards believing the results are accurate, because we all know that spectrumites have issues with those types of cross-brain processes.

I suggest giving the article a read. It’s very interesting. And hopefully this will lead towards a better understanding of autism and other ASD conditions in the future.