Our First Autism Awareness Month/Day

Logo_WAAD_SmallAutism Awareness Month (April) and Autism Awareness Day (April 2nd) have been celebrated for many years, but it is taking on special meaning for us this year.  That’s because, this past year, we finally got a diagnosis on NHL.  Yes, NHL is an Aspie.  What’s more, I’m an Aspie as well (albeit, undiagnosed).

I first "came out" with NHL’s diagnosis (and my self-realization) back in November, though I hinted about it in September.  Since then, I dealt with feelings of guilt over "giving" NHL Asperger’s.  (I still feel this from time to time, but I’ve come to terms that there isn’t any blame to be assigned here.)  I’ve also written about some of the facts of an Aspie’s life such as trouble looking people in the eyes, excessive honesty, and rigid adherence to plans.  I’ve also written about the challenges an Aspie parent faces when parenting an Aspie son.  (Let’s just say Aspie-Aspie fixation battles are NOT fun for anyone involved!)

I’ve written about how Asperger’s has been portrayed in the world at large both in print (great book), on TV (love that Arthur episode), and in the news.  (No, Asperger’s did NOT cause the Newtown shootings, Savannah Guthrie!)  I also combed the web to share some of the best Asperger’s Syndrome resources I could find.

Given the latest CDC study that one in fifty kids is on the spectrum, and given that Asperger’s continues to affect our everyday lives, I foresee many more posts on the subject as our Asperger’s adventure continues.

Are you or is anyone you know on the spectrum?

NOTE: The World Autism Awareness Day image above is from Autism Speaks.  More information about World Autism Awareness Day is available from their website.

The Challenges of Asperger’s Parenting

There are many blog posts, books, and articles written about parenting a child with Asperger’s Syndrome.  There isn’t much written, however, about parenting a child while HAVING Asperger’s.  Children can be a challenge all by themselves. When you add in a parent who gets overstimulated, fixated on things, and thinks literally, the challenges are vastly multiplied.

One of the things that a parent of a child with Asperger’s will quickly notice is that their child can focus in on the way they think things should be.  The other day, while dropping NHL off in Hebrew School, he walked over to another child’s desk.  He wouldn’t listen to me to stay away.  The reason for this?  All of the chairs were turned upside down on the desks in a certain way (backs of the chairs pointing down on the side kids normally sit on).  All of the desks, that is, except for this one desk.  This desk had its chair’s back pointed down on the opposite side.  NHL had immediately spotted the problem and sought to fix it.

Similarly, a parent with Asperger’s might fixate on the way things should be.  This can lead to stress when the fixation involves the child and the child doesn’t immediately conform.  All too often, I fixate on one thing and NHL fixates on a different thing.  Our fixations clash which leads to a battle of wills with B caught in the middle trying to calm us down and resolve the situation.

Just like NHL fixated on the one desk being out of order, my fixation-of-choice seems to be order.  I need things done a certain way and I expect my kids to act a certain way.  Some of these things are understandable restrictions, such as when I tell NHL not to put his arms to his side and spin around uncontrollably in the frozen aisle of the supermarket.  Some, however, are less understandable and more the product of my own past.

Over the years, I’ve learned how to "fit in" in social situations even if I’m unsure of how to act.  Typically, my strategy is to blend in and not call attention to myself.  This means not answering questions (even if I know the answers), not volunteering, and not taking the lead.

NHL, meanwhile, takes a different tact.  He tries to answer all the questions, volunteer for all of the jobs, and take the lead in everything.  This can be very good (as he is very bright and is likely capable of much of this), but this can also put him in situations where his "differentness" has a spotlight shone on it.

As someone who was bullied quite a bit, this spotlight produces a feeling of sheer anxiety in me.  I begin to fear that kids will make fun of him and I try to protect him the only way I know how: Trying to force him to follow my "blend in" strategy.  Now, I know that this is wrong – I should let him shine and not try to force my ways on him.  However, in the heat of the moment, I fixate on how things "should be" (NHL staying quiet and not doing things that might get him picked on) to the exclusion of all else.  (Including ways of explaining this to NHL in words other than "do this because I told you to.")

This is going to be a constant challenge with me.  I need to keep in mind that my own actions, no matter how right I might think they are, could be causing more harm than good.  I need to avoid fixating on one path, no matter how much that fixation is a part of me.  In short, I have to parent while taking into account both my son’s Asperger’s as well as my own.

This is going to be tough, but I’m going to do my best.  After all, this is for my son and he deserves nothing less.

NOTE: The Autism Awareness ribbon icon above was created by Melesse and comes from Wikimedia Commons.

Note To Savannah Guthrie: Stop Linking Newtown To Asperger’s

Yesterday, during the Today Show, Savannah Guthrie hosted a segment where they discussed some new details about the Newtown shooter.  (NOTE: I refer to him as thus because I don’t want to give him any more fame.)  Four minutes into the segment, she said this:

"Josh, there has been a lot of talk that he may have had Asperger’s."

Sigh. Here we go again.

Just after the Newtown shooting, people were desperate to find out information on the killer.  Any little nugget of information would do no matter how trivial.  If it set him apart from "normal people" then all the better.  During one interview, the killer’s brother mentioned that he might have had Asperger’s Syndrome.

Suddenly, news organizations began asking "Did Asperger’s cause him to do this?"  After all, people with Asperger’s Syndrome are highly anti-social, lack feelings and empathy, are highly obsessive, and are prone to violent outbursts, right?  Just like a killer would be.

There’s only one problem: It’s not true.

Many, many other people have covered the reasons behind this.  I thought about blogging it but figured it was well covered ground.  (Besides, I covered this myself after the Aurora shootings when some people blamed Asperger’s.  At the time, we hadn’t mentioned our son’s diagnosis publicly.) Savannah’s mention of Asperger’s in relation to the shooting shows that there are still those who think Asperger’s = Potential Killer.  Clearly, the more education the better.

Craving The Spotlight Then Blinded By The Spotlight

First of all, people with Asperger’s Syndrome aren’t anti-social.  We Aspies actually tend to want to socialize a lot.  The problem is that we don’t instinctively know the rules for socialization.  What others "just get", we have to simulate by remembering and applying tons of rules on the fly.

Imagine going to a strange country with a strange language. If you needed to ask for something but could only remember individual words, you could string words together to make yourself understood. ("Milkshake banana please would like I.") Still, you’d be seen as highly awkward in your speech pattern compared to natives who knew the language inside and out.

In addition, Aspies have a tough time picking up on non-verbal and non-literal cues.  These can make up 70% or more of a conversation.  For example, suppose you said "Joe just got his girlfriend a ring for her birthday.  She really loved it."  You might roll your eyes and emphasis "really loved" to indicate sarcasm.  Someone not on the spectrum would pick up on this and understand that she thought the ring wasn’t very nice.  Someone with Asperger’s would think Joe’s girlfriend was happy with him.  Otherwise, why would you say that she really loved it?

To simulate this, imagine instead that 70% of the letters in this blog post were missing.  How successful would you be in reading it?  Even if I provided dashes where the letters should go, a luxury that Aspies don’t have, it would be nearly impossible.  A—- -l-, -i–o– m-s- — –e -e–e–, –u- a—-g- –n—c- -i– —o– c—–t–y -n–a–b-e.  (Translation: "After all, without most of the letters, your average sentence will become completely unreadable.")

All of those rules to remember and blanks to fill in (along with other issues such as problems filtering out background noise or issues with loud noises) can make socializing mentally taxing.  So while people with Asperger’s might want to socialize, they find it hard to do so.  It’s much easier to sit on the social sidelines wishing you could be part of the game.  When I was in high school, I always pictured it as craving the spotlight, only to find it blinding when in it.

Killers, on the other hand, are anti-social not because they don’t know the "rules of the road", but because they hate people completely.  Aspies don’t feel like this at all, but, sadly, many neurotypicals (those without Autism Spectrum Disorder, NTs for short) don’t see the distinction.

Aspies Feel Deeply and Intensely

A big myth about Asperger’s (and Autism in general) is that those on the spectrum lack empathy or are cold and emotionless.  This couldn’t be further from the truth.  Remember those blank dashes?  Well, they work against Aspies here as well.  Aspies have a hard time telling a person’s emotional state without them explicitly stating it.  This means that it is easy for an Aspie to make an NT upset without meaning to.  Once they realize how the person feels, however, Aspies will feel highly upset over causing such hurt.

In fact, this can feed into the "anti-social" aspect of Asperger’s.  If you socialize, you risk hurting someone badly (emotionally).  Why take the risk?  Why not avoid people and thus avoid hurting people?  Contrast this with a disturbed individual who find pleasure in hurting people.  Which is more likely to go on a killing spree?

What You Call Obsession, I Call A Special Interest

Many Aspies have what some NTs might call obsessions.  They aren’t true obsessions, however, but rather special interests that Aspies love.  Other people have interests like these too.  Some might build model airplanes.  Some might knit.  Some might read books.  Aspies, however, tend to go all in when it comes to their interests.  Instead of building a model airplane, they’ll make sure it is perfectly accurate and know all of the historical facts about each one.  Instead of knitting, they’ll know every type of yarn and needle by heart as well as which is best of which project and will design their own patterns from scratch.  Instead of merely reading books, Aspies will focus on a subject, say Dinosaurs, and read everything they could possibly get their hands on regarding that topic.  Remember "Aspies Feel Deeply and Intensely" from the last section?  Well, in this section if means that our interests are deeper and more intense as well.  In the end, though, they’re just interests, not unhealthy obsessions like one might find in a killer.

Reactive, Not Planned

Can someone with Asperger’s be violent?  Yes, of course.  But so can any person, whether on the Autism Spectrum or not.  If someone is violent and has green eyes, you wouldn’t claim that their green eyes are what caused the violence.  The same goes for Asperger’s.

The Newtown shooter cased the school for weeks, planned his crime, shot his mother, loaded her guns in the car, drove to the school, and followed his plan to maximize his killing.  This level of planning is completely the opposite of the kind of violence that someone with Asperger’s is likely to exhibit.

An Aspie’s violence (again, IF they come… not all Aspies experience this) aren’t planned. They are blind, reactive strikes due to feeling intense frustration and anger and not knowing how to properly express this feeling.  The violence, in this case, is likely going to be limited to pushing or hitting.  If the Aspie is given time and space to calm down, they will feel highly embarrassed and saddened over what they did.

In fact, people with Asperger’s are more likely to be the victims of violence instead of the perpetrators.  Bullying is a big problem for those with Asperger’s.  Bullies love to pick on those who are different and "doesn’t understand how to socialize" certainly qualifies.

The Truth and Damaging Lies

Asperger’s is not a disease.  It’s not a mental illness.  It doesn’t lead people to become killers.  Asperger’s Syndrome is a high-functioning version of Autism which, in turn, is a developmental disorder.  People with Asperger’s might think differently than neurotypicals, but – at their core – they aren’t so different.

Spreading lies about Asperger’s being a reason for a killer’s actions only adds meaningless sensationalism to a news story and exposes Aspies to danger.  After initial stories about the killer’s alleged Asperger’s hit, some people began to fear those on the spectrum.  Facebook groups calling for Aspies to be rounded up and (if the group was feeling generous) locked away were formed.  One group asked for a certain number of likes, after which they would set a kid with Asperger’s on fire.  (I’m not sure who is the worst here: The people who formed this group of the people who liked it before Facebook removed the group.)  In one mall, a child who was known to have Asperger’s was tackled and beaten up – because his hand was in his pocket and they feared he had a gun.

These are the kinds of actions that people like Savannah Guthrie inspire when they continue mentioning Asperger’s when the topic of the Newtown shooter comes up.  This apparently isn’t the first time that Savannah has mentioned this, but I implore her to make it her last.  She should do some research into what Asperger’s really is, meet some people with Asperger’s Syndrome, and host a segment where some myths are busted about Autism Spectrum Disorder – including the one that she herself perpetuated.

Here’s hoping that long, explanatory articles like this one won’t be needed in the near future.

NOTE: The Autism Awareness ribbon icon above was created by Melesse and comes from Wikimedia Commons.

Asperger’s Syndrome Resources

CrazyTerabyte_BookWhen you get an Asperger’s Syndrome diagnosis, one of the first things you do is go on a quest for information.  Thankfully, there are a lot of resources out there.  Here are a few of the ones we have found over our time.


Books are, of course, a great resource.  Many books have been written about Asperger’s Syndrome.  Some cover general information, some are designed to allow children to understand Asperger’s Syndrome, and some help educators know how to help Aspies reach their full potential.

Here are a few of the ones that we like:

Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family – This book begins with an introduction from a child with Asperger’s and moves on to techniques that can help an Aspie learn and deal with the neurotypical world.

All Cats Have Asperger Syndrome – This is a humorous book relating cat behavior to Asperger’s Syndrome.  Behind the humor, however, is a very accurate telling of what it is like to have Asperger’s Syndrome.

Asperkids: An Insider’s Guide to Loving, Understanding, and Teaching Children with Asperger’s Syndrome – This book gives a good overview of techniques that assist kids with Asperger’s Syndrome to deal with the neurotypical world.  It also helps describe some ways to teach children on the spectrum.

Spaghetti is NOT a Finger Food ( and other life lessons ) – This is an e-book I’ve already reviewed.  It is a story detailing a day in the life of Connor, a kid with Asperger’s.  The story is told through Connor’s eyes, so you get to see just what he is thinking as events unfold.  It is a great book to read with kids to help describe some of the challenges that kids with Asperger’s Syndrome have.

Blog Posts and Web Pages

Of course, there are a lot of blog posts online dealing with Asperger’s Syndrome.  Here are a few that I’ve recently found useful/informative.

The AQ Test – This is a quick test to help determine if you have Asperger’s.  If you score above 32, you likely have Asperger’s Syndrome.  The average for those who are neurotypical is under 17.  (I scored a 36.)  Of course, as with any test, it isn’t completely accurate.  You could score high and not have Asperger’s Syndrome.  Still, a high score does mean that Asperger’s is a definite possibility.

Ten Things You Should NEVER Say To An Autism Parent – This is a great blog post detailing some of the questions that you are bound to hear when you have a child with Asperger’s/Autism.  Everything from questioning your parenting skills to doubting the diagnosis (because random strangers are better informed than your doctor) are covered.

Debunking 6 Myths About Asperger Syndrome – This has a few of the most common misconceptions that people have about those with Asperger’s Syndrome.  It provides some needed insight to dispel the myths.

Asperger’s and Literalism, aka Why We May Seem Condescending and Pedantic – This was a great post by a friend of mine, Christina.  Christina has Asperger’s and has a son on the spectrum as well.  Her blog post is a good insight into why people with Asperger’s might act rude when we don’t mean to.

50 Positive Characteristics of Aspergers – Too often, Asperger’s is phrased as a horrible disease that a person much fight against their entire lives just to have a chance at a normal life.  And while it may often feel this way, there are a lot of good things that comes with Asperger’s.  This focus on the positive was refreshing.

70 Tips & Tricks for Educating Students with Aspergers/High-Functioning Autism – Parenting a child with Asperger’s is tough, but so is being a teacher to an Aspie.  This list can give educators some valuable tactics to help students with Asperger’s Syndrome reach their full potential.

There are many resources out there for those with Asperger’s Syndrome and/or for those who interact with those with Asperger’s.

What resources would you recommend?

NOTE: Some of the links above are Amazon affiliate links.  I will receive a small compensation if you use them to make a purchase.  Also, the "book" image above is from CrazyTerabyte and is available from OpenClipArt.org.

Spaghetti is NOT A Finger Food – A Great #Aspergers eBook

Spaghetti Is NOT A Finger Food CoverEver since NHL was diagnosed with Asperger’s Syndrome, I’ve been on the lookout for books, TV shows, and other places where Asperger’s was covered.  So when I heard about Spaghetti is NOT a Finger Food by Jodi Carmichael, I knew I had to read it.

In Spaghetti is NOT a Finger Food, we are introduced to Connor, a third grade student with Asperger’s.  As we follow Connor through the day, we see the various challenges and triumphs that he encounters.  Since the story is told from Connor’s point of view, the reader gets a glimpse into how an Aspie sees the often-confusing neurotypical world.  In addition, you get to see just how an Aspie’s good intentions can go horribly awry.

A few sections of the book stood out to me.  Early on, Connor (having been sent to the hall to calm down) re-enters the classroom.  During his hall time, he has thought of a lot of gecko-related facts.  His brain was positively bursting with facts that he just had to relate to his teacher immediately.  So important was this, that he thought it was completely acceptable to squash another kid’s volcano science project, cut in front of some other kids, and interrupt everyone to tell them all the facts he remembered.

Of course, we can realize the many places where Connor went wrong and what he should have done.  In Connor’s mind, however, the gecko-facts were the most important thing in the world.  His mind was obsessing about them so much that he could not, in the moment, stop himself, think about how his actions might be perceived by others, or even consider the possibility that other people might not be interested in his facts.  The only thing that mattered was telling those facts.

I can easily see parallels in this with NHL.  When NHL gets something in his head, he has to tell everyone.  He doesn’t realize when the people he’s telling aren’t interested because, to him, whatever is highly interesting to him MUST be highly interesting to everyone else.

Another example of single-minded obsession comes into play when Connor – who loves everything to do with dogs – spies a new dogs book in the library.  Since it is above his reach, he seeks out a stool.  Unfortunately, a girl in his class is already sitting in that stool.  Since Connor thinks that stools are for getting books from high up and chairs are for sitting, he doesn’t understand why the girl doesn’t move.  In his mind, his reasoning is perfectly logical and his actions (pulling the stool out from under her) are completely justified.  He is honestly clueless about why she would be upset and about why the teacher wouldn’t talk to the girl about chair-stool differences.

Here, Connor shows how Aspies can sometimes "lock in" on one solution to a problem to the exclusion of other, more reasonable or socially acceptable solutions.  Connor could have found another stool, stood on a chair, or asked his teacher for help, but when he saw a solution (stand on the stool the girl was using), he locked in on that and couldn’t let go of the idea.  NHL does this too from time to time.  His brain will lock into an idea and can’t consider other options.  Honestly, though I’ve worked on this for many years, I still do this also all too often.

Connor also has trouble telling what constitutes friendship.  During lunch, he slurps his spaghetti messily which causes a girl at his table to laugh.  Thinking that this made her happy, he slurps more spaghetti, then escalates it until he is dumping the spaghetti on his head.  The entire lunch room laughs but Connor is oblivious to the possibility that they are laughing AT him.  Instead, he thinks this means that they are all his friends.

NHL can be like this too.  It breaks B’s and my hearts when he describes a friend he has in school only to say hi to them and have them roll their eyes at him and ignore him.  Recently, he’s gotten more aware of this which, in some ways, only makes the situation worse.  He feels isolated and alone.  Having gone through much of school feeling this, I can completely relate to NHL and Connor.  Being an Aspie doesn’t mean you are anti-social.  In fact, Aspies often want to socialize but don’t know how to.  I’ve often described it as craving the spotlight but feeling intensely uncomfortable once it is shined your way.  When it is on you, you don’t know what to do and just want to escape it.  When it isn’t on you, you just want to get into it but don’t know how.

My final example has to do with honesty.  Aspies tend to be honest.  Not just honest, but too honest.  Honest to a fault.  Connor repeatedly demonstrates this when, mistaking social cues, he tries to be helpful by relating what he thinks is pertinent information (for example, how a wrinkle cream he saw advertised on TV could erase his teacher’s wrinkles).

NHL, too, is very honest.  In fact, it is very difficult for NHL to lie.  He tries, don’t get me wrong, but his lies are very easy to spot.  A few probing questions and his attempted lie crumbles to dust as he tells the truth.  Like NHL, I have problems lying as well.  Lying about anything major (say, more than a birthday present) is a very stressful endeavor.  I can try but the truth will blurt right out of my lips before long.

I really enjoyed the glimpse of life through Connor’s eyes and would recommend this eBook to anyone (adult or child) who knows someone with Asperger’s Syndrome.  Hopefully, Jodi will turn this into a series and allow us to see more of Connor’s world.  I, for one, can’t wait.

Spaghetti Is NOT a Finger Food is available from Amazon.com for the Kindle Fire, Kindle Cloud Reader, Kindle for iPad, and Kindle for Android.

B has also posted her take on Spaghetti is NOT a Finger Food.

Disclaimer; I purchased this book from Amazon and decided to review it.  The opinions above are my own.  I wasn’t compensated by anyone for this review, however the above link to the book is an affiliate link.

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