Category: Autism

Today is both Autism Awareness Day and the second day of Autism Awareness Month.  Last year, was our first Autism Awareness Day/Month since our diagnosis.  This year, we’ve gone from learning how to live with Autism to advocating and helping to spread information about Autism.

In April, I wrote about Obsessions and Asperger’s Syndrome.  I told of how NHL and I can sometimes "lock in" on a subject and be unable to switch our focus until we are done.  This can be a benefit (for example, if I need to work on something until it is done without giving up) or a problem (e.g. if I get stuck on doing X but I really don’t have time to do it).

In May, I decided to show The Upside of Asperger’s.  So often, Asperger’s Syndrome is shown as a problem to deal with or an obstacle to overcome.  There are, however, instances, where having Asperger’s Syndrome can be a blessing.  For example, I’m pretty immune to the "drama" of social interactions.  Where a neurotypical person might exit from a situation reading hidden meanings from every action the other people took, Aspie’s are more likely to be blind to these and just focus on the content of the situation.  In addition, people with Asperger’s Syndrome tend to be honest – to a fault, perhaps, but honest.  Telling a lie, for me, is a highly stressful endeavor.  I can feel the truth expanding inside me like a balloon and I know it’s only a matter of time before it comes bursting out.

Later that month, I wrote about Social Anxiety vs. Crowd Patience.  Here, I pointed out a quirk in how I react to social situations.  One on one social situations are stressful for me, but I tend to be fine with crowds.  In part, this is because the social expectations of navigating crowds are easy to deal with.  So long as I don’t knock anybody down, I can weave in and out just fine.

In July, I wrote about Asperger’s and the Emotional Cage.  One of the problems with Asperger’s Syndrome is that your emotions can be hard for others to determine.  Many times, I can feel very angry, sad, or confused.  I feel like I have all the words to describe my emotional state in my head, but something happens when I try to verbalize these words.  They become garbled and completely ineffective at describing my emotional state.  And that’s if I’m even able to get any words out at all.  I’m much better at describing my feelings in writing.

In November, I decided to use my greater skill with the written word over the spoken word and crafted An Open Letter About Asperger’s Syndrome to deal with some "myths and misconceptions" that some well-meaning relatives kept bringing up.  For example, that a person doesn’t "grow out of Asperger’s."  Yes, someone can learn to deal with the neurotypical world and delay their meltdowns until they are alone.  This can mean that – to others, at least – they appear "cured", but all it means is that the person has developed coping strategies to help them.

In December, I read an article where a mother blamed herself for giving her son Autism.  She listed reasons from vaccines to ultrasounds to drinking water with fluoride in it.  It spurred me to write How I Did NOT Give My Son Autism (And How I Did).  In it, I explained that none of the article’s author’s "causes" actually cause Autism.  While we don’t fully understand Autism, it appears to be primarily a genetic condition.  This is where I have felt some guilt since my genes obviously "gave" my son Autism.  It was a guilt that I struggled with even as I understood that there was no blame to be assigned.  It wasn’t like I was picking through my genes and deciding which ones my children would have.

It is interesting to note that, since my post was published, research has shown that the foundations of Autism begin in utero.  I should also note that, while I searched for a link to this article, I found two more articles – one from 2013 and one from 2011 – saying similar things.  This would eliminate many of the article’s author’s claims since many of her listed "Autism causes" would have come after the groundwork for her child’s Autism were laid down.

In March, I explored Letting Your Child Shine (or Fail).  Here, I pitted my desire to both protect NHL and help him learn from my experience versus letting him try things on his own and gather his own experience.  All too often, I find myself trying to save him from failing because I imagine it will be devastating to him.  Instead, I concluded, I need to learn to let him reach for his lofty goals.  I might just be surprised by how high he can soar.

Finally, just a week later, I addressed a common misconception about Asperger’s Syndrome in Asperger’s, Empathy, and Butterflies.  People with Asperger’s Syndrome are often thought of as having no empathy.  Instead, the opposite is usually true.  Aspies can often have no much empathy that they fear hurting anyone or anything.  Couple that with not knowing social rules as well as neurotypical folks and Aspies usually wind up retreating into the safety of solitude.

In this specific case, NHL really wanted to see the butterflies in a butterfly house.  Once he got inside, though, he screamed about wanting to leave.  Only once he was safely outside did he explain why he was so frightened.  He knew just how fragile butterflies are and couldn’t stand thinking that he might hurt one.  And since they were all over – on the floor, flying through the air, and on many surfaces nearby, any movement of his might hit a butterfly.  Hitting a person might mean pain for that person but not much else.  Hitting a butterfly might mean it would die.  The fear of hurting/killing one of those butterflies overwhelmed him too much to function.  In essence, he empathized with the butterflies too much to be able to enjoy them.

Hopefully, these posts have helped to inform people about Asperger’s Syndrome and Autism.  The more information that is spread, the less people will rely on myths and misconceptions and the quicker people with Autism can get the help they need to deal with the neurotypical world.

There’s a post that’s making the rounds in the social media world from a mother who blames herself over the fact that her child has Autism.  Normally, I’d say that this is normal.  Every parent blames themselves over everything that happens to their child.  Getting an Autism diagnosis is never easy – even when it winds up helping you understand what is going on with your little one and even though it can help you help them more.

That being said, though, the mother goes through a laundry list of ways that she gave her son Autism.  From Ultrasounds to vaccines and High-Fructose corn syrup to C-Sections.  Even fluorinated water contributed to his diagnosis.  She’s convinced that, had she just avoided each of these things, her son would be "normal."  Therefore, it’s all her fault.  Right?

Wrong.

Her mistakes aren’t on that laundry list.  Instead they involve 1) trusting the wrong sources for medical information, 2) bad risk assessment, and 3) viewing Autism as some debilitating disease which means her child will never have a fulfilling life.

Consider The Source

The good thing about the Internet is that everyone can get the word out about what is important to them.  The bad thing about the Internet is that everyone can get the word out about what is important to them.  Even if there are no facts to back them up.  If you wanted proof that man never walked on the moon, just do a search.  I’m sure dozens of sites will be willing to show you "definitive proof" that the astronauts were suspended by wires on a sound stage.  This doesn’t mean they are right, of course.  Just that they can set up a web page.

On the medical front, there are lots of organizations that make their money by getting people to question "the medical establishment."  To listen to them, there are tons of cures for everything from cancer to the common cold, but Big Medicine is keeping them down.  But if you just buy their pills/special water/anti-toxin cleanse/etc, you’ll get better in no time.  They fall under the umbrella of something called Alternative Medicine.

The problem is that they – for the most part – don’t work.  I say "for the most part" because every so often some alternative medicine shows promise in actual medical treatment.  When this happens, it moves into mainstream use in some fashion.  (Thus leading to a common joke told in groups that bust medical myths:  Do you want to know what people call Alternative Medicine that works? Medicine.)

To give an example, suppose that chewing a leaf from a certain plant helped make pain go away.  Some might sell the leaves as an alternative to pain medication and it might fall under the heading of "Alternative medicine."  However, scientists would study the leaf, isolate the chemical compounds responsible for the pain relief, study it, and make a pill comprised of a safe and reliable dosage of this compound.  The alternative medicine would wind up being just medicine.

Yes, drug companies seek out profits and, no, they aren’t saints.  However, if some drug company (even a tiny one) actually could cure cancer with a "toxin cleanse" or some other treatment, they would make billions.  There are scores of researchers trying to figure out each disease and condition.  How does it begin?  How does it progress?  Can it be slowed down/halted/cured?  They release their findings in a public fashion for other scientists to examine and attempt to replicate.  Findings that can’t be replicated are ditched and those that can be repeated lead to new theories on how these conditions work.  This, in turn, leads to new treatments.

The problem with the conspiracy theory approach is that it requires a large group of people keeping the secret so well that they hide it from the public and yet so poorly that the conspiracy theory group "sees the truth."  In the case of the Moon landings, tens of thousands of people supposedly kept quiet about the design and launch of a rocket as well as the training of astronauts over a period of over 40 years.  All to keep the illusion that we went to the Moon.

And yet, somehow, these conspiracy theorists have found the truth.  The deception needs to be both near-perfect (to explain why the public has fallen for it) and fundamentally flawed (to explain how the conspiracy theorists figured it out) at the same time.  Conspiracies might work on a small time or size scale (say, a politician hiding illicit actions for a couple of years or a small group of people keeping a small secret quiet for a decade), but major companies/government organizations keeping secrets involving thousands of people just don’t happen.  (The only possible exception might be national security matters and there’s even a case against that if Edward Snowden has proven anything.)

Moving back on topic a bit, I looked through the sources that the blog author linked to.  Some claimed certain scientific studies claimed a link to Autism where one might not exist or where the link might exist but might not be causal in nature – that is, X might show increased incidence in kids with Autism not because X causes Autism because of some other factor.  Others were from sites built specifically to decry that Medical Item Y is really horrible and causes tons of horrible illnesses.  Quite a few touted their own "alternative medicine" or "folk medicine" treatments instead of actual medicine.  Most of these sites, I wouldn’t trust as far as I could throw the servers they run on.

Bad Risk Assessment

This one is primarily aimed at the "vaccines cause Autism" cry that the mother echoes.  I’ve lost count of how many times I’ve heard this uttered.  First off, there is no study proving a link.  In fact, no matter how many times this is studied, the results always come back showing no link at all.  The main "Autism caused by vaccines" outcry came from a study by Andrew Wakefield who has since been found guilty of misconduct, had his license to practice medicine revoked, and had his study erased from the Medical Registrar.

Secondly, the reasoning behind "vaccines cause Autism" seems to change as the supposed causality is disproven.  First, it was mercury in vaccines.  When that was removed and Autism went up, it became giving multiple vaccines at once instead of breaking them apart.  Then, it was overwhelming the child’s immune system with too many vaccines too quickly.  Then, it was mysterious "toxins."  (This last one seems to have stuck mainly because you can’t disprove "toxins" if just what the toxin is remains undefined for maximum spooky effect.)

However, let’s assume for a moment that a study came out tomorrow definitively proving that vaccines cause Autism.  (For the purposes of argument, we’ll skip the steps where the study would be checked and double-checked with replication attempts being made by many third party scientists.)  Would it make sense to stop all vaccinations to halt the "spread" of Autism?

No.

Here’s where Bad Risk Assessment gets involved.  Vaccines are victims of their own success.  Most people today (and I include myself in this) don’t remember the horrors that many diseases wrought before vaccines were found for them.  Many people think that the Measles just involves being sick with spots for a week (ala Chicken Pox) or that Whooping Cough just means you cough a lot.  No big problem, right?  Except that many people either died or were permanently scarred/disabled by these diseases.  If you had a choice between your child having Autism or having a big chance of a horrible death which would you choose?  A child with Autism isn’t worse than a dead child.  Anyone who thinks so clearly has never lost a child before.  I’m sure the parents of Dana McCaffery would have loved to have her alive and Autistic instead of dead at 4 weeks – too young to be vaccinated.

Here is where the big success (and "failure") of vaccines lies: Herd immunity.  If you vaccinate 90% of a population against a disease, the disease won’t be able to spread enough to infect the 10% who aren’t vaccinated (usually due to age or medial conditions).  This means that those who aren’t vaccinated are protected by the vaccinated.

Now some people decide vaccinations are bad and stop vaccinating.  Their kids don’t immediately fall ill as herd immunity is still in play.  However, as they spread the word about "evil vaccinations" and as more people stop vaccinating, herd immunity stops working and more people get infected.  Three years ago, as part of a post on herd immunity, I wrote a Vaccination Simulation.  It’s not perfect, but I still think it’s a good demonstration.  Sadly, this is being demonstrated in real-life with the uptick in measles as well as other vaccine preventable diseases.

Of course, nobody put it better than Penn and Teller.  This scene from their show Bulls**t shows the issue a lot better than I can.  (WARNING: Given that it’s from Penn and Teller’s show "Bulls**t", expect foul language.)

(Side note: For more facts on vaccines and why the anti-vaccination movement is wrong, I’d recommend reading http://antiantivax.flurf.net/.)

Autism Isn’t A Debilitating Disease

Yes, some people with Autism will spend their lives needing constant help with every day matters.  However, other people with Autism will go on to lead very productive and fulfilling lives.  Some will even excel in their fields.  I’ve found my Autistic thought processes lend themselves very nicely to dealing with computers – which is handy considering that I program websites for a living.

I can’t speak for the author’s child.  I don’t know the child and every person with Autism is different.  The only clue I have is one line that indicates that her child is verbal.  That’s about it.  This doesn’t give much of an idea of what challenges lie ahead.  I can almost guarantee that they aren’t insurmountable, though.  Especially given how young her child is.  The younger a child with Autism gets help dealing with the neurotypical world, the easier of a time they’ll have.

There are many support groups and therapists available to parents nowadays.  These people can help children with Autism navigate their way through a neurotypical world that often seems all too confusing.  They can also help neurotypical parents understand their child with Autism.

I’d recommend that the author find a group that doesn’t focus on pointing fingers at what caused her child’s Autism and instead looks to find a way to help her and her child.

How I REALLY Gave My Son Autism

Like I said before, I have Autism – specifically Asperger’s Syndrome.  After our son’s diagnosis, we began reading up on Asperger’s Syndrome and everything fit me too well.  I always knew I was different but never why.  I chose not to get a formal diagnosis mostly because it would cost money we don’t have and it wouldn’t help NHL at all.  (I’ve already figured out coping strategies.)

It took me some time to came to terms with the fact that I have Asperger’s Syndrome.  It was like my entire life was both being re-written in front of me and yet, at the same time, as if my entire life made sense for the first time.  (I think I annoyed B with a few too many "a-ha! THAT’S why I do X" or "THIS explains why I liked doing Y as a child!" exclamations.)

As I came to grips with this, though, I found myself feeling something else.  At the time, I called it "Genetic Guilt."  You see, all the evidence points to Autism being a genetic issue.  Somewhere in our DNA, some genes get flipped one way instead of another way and the result is the Autism spectrum – ranging from high functioning to (for lack of a better word) low functioning.  Since I was clearly Autistic, this meant that MY genes gave NHL Autism.  Part of me felt that it was MY fault.  Of course, I knew intellectually that this wasn’t true, but it took the emotional parts of my brain longer to catch up to the logical parts of my brain.

Modern Day Refrigerator Mom?

In the past, when we knew much less about Autism than we know today, the blame for Autism was placed on mothers.  The "Refrigerator Mother Theory" figured that moms who didn’t provide enough "maternal warmth" caused their children to be autistic.  While that theory is (thankfully) dead and gone, I don’t think the "blame the parents" attitude ever completely left.

There still seem to be countless people pointing fingers at parents (often softening the blow by claiming they were duped by Government/Doctors/Big Medicine/etc but pointing nonetheless).  What’s worse is that many parents seem to accept this pointing with open arms.  Perhaps it’s due to the feeling of control they have over a situation that can often feel very out of control.  Whatever the reason, though, it’s wrong.

Here’s the truth from one parent with Autism to all parents (Neurotypical and Autistic alike) who have children with Autism:  The only way you "gave" your child Autism is via genetics and that’s something you don’t have control over.  Accept the "why" and move on.  Focus on the child you have.  They aren’t some brainless lump with no hopes for a future and they certainly aren’t better off dead.  They have their challenges, yes, but they also can have support to help them through.  A big part of that support is you.  Be there for your child and get support for yourself as well.  It isn’t easy (no, not even if your child is "high functioning"), but it is worth it.  Blaming yourself and buying into conspiracy theories or Internet rumors about how Autism happens isn’t going to help anyone, least of all your child.

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

This was originally written as an e-mail to some relatives of mine who cast doubt on NHL’s diagnosis of Asperger’s given how "well behaved" he acted and how much "Internet research" they did concerning Asperger’s Syndrome.  (Of course, if Internet research made someone an expert in a field, I’d be an expert in just about everything by now.)

As of this writing, I’m still wavering on whether I should send the e-mail or not, but I did decide to post a version of it here.  I’ve edited it to remove some personal references, but the overall tone remains the same.

If you encounter a relative who thinks they know more about Autism than you do and who "knows" that the doctor who spent hours on the diagnosis is wrong because "he/she seems so normal" to them, feel free to either send them the link to this blog post or to use this as the starting point for your own letter.

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Hi,

I know you mean well when you say things like "NHL acts too well to have Asperger’s", but it just winds up as insulting.  I wanted to clear up a few points.

First of all, we didn’t just decide one day that NHL had Asperger’s Syndrome.  We had a detailed diagnosis done by a qualified doctor who spent hours observing and testing him.  There is no doubt that NHL has Asperger’s Syndrome.

Secondly, we live with him every day.  We see behaviors and actions that others just don’t see.  For example, NHL stims when he’s overwhelmed.  (Stimming = self-stimulation and can take the form of flapping arms, clapping, spinning around, picking fingernails, or other actions that help calm the person down.)  NHLs stimming of choice right now is slapping himself.  He’ll get overwhelmed and will start slapping his chest or knees with his hands.  He rarely does this in public, but will do it often when at home if he’s stressed.  (For example, if his homework assignment is tough and getting him upset.)

NHL will also melt down if things don’t go according to the plan he had in mind or if he is anxious about events.  All too often, I’ve had to drag NHL out of a store while he screamed bloody murder because keeping him in the situation will only lead to a bigger melt down.  When the situation is too stressful for him, he needs to be removed from it to help him calm down.  He won’t "just get used to it."  It will just spiral more and more out of control.

I think one of the main problems is one of perception.  Some people still view Asperger’s as some horribly stigmatizing illness which will make the person suffering from it unable to function properly in society.  This couldn’t be further from the truth.  People with Asperger’s Syndrome typically have social issues, but they also can be extremely intelligent – as NHL certainly is.  They can learn to adapt to neurotypical society.  (Side note: Please get in the habit of using the word "neurotypical" instead of "normal.")  NHL is getting help with adapting not just from B and me, but from his teachers and other school staff.  He’s also learning how to be an advocate for himself and how speak out when people don’t treat him right.

NHL won’t ever be fully neurotypical and will find himself in situations from time to time that he just can’t deal with, but even then he’ll have methods on-hand that he can use to minimize the damage (so to speak).  An adult Aspie friend of mine pointed out that she’s mastered "delayed meltdowns."  She can feel like she can’t take any more on the inside and look perfectly fine on the outside.  Then, when she gets the first chance, she can go off on her own and cry/scream/etc until she feels better.

Many people with Asperger’s go on to be very well known in their fields.  Some even become rich and/or famous.  Daryl Hannah and Dan Aykroyd have Asperger’s Syndrome and yet that hasn’t stopped them from having successful acting careers.

It’s not a matter of "growing out of it" or "being cured of it."  It’s a matter of "emulation."  Aspies’ brains tend to think in IF-THEN formats.  IF this happens THEN this should happen.  IF someone says this to me THEN I should do that.  This happens to be very useful when dealing with computers (probably one reason why tons of people in the computer industry are Aspies), but this is awful for dealing with social situations.

Social situations are filled with shades of grey where tiny nuances determine whether a response is completely appropriate or horribly offensive.  Aspies are really bad at interpreting these nuances, but they can build rules in their heads over time that help them deal with those social situations.  Like how a computer can "emulate" another computer.

Unfortunately, just like the computer emulation analogy, an Aspie emulating neurotypical social behavior will find this slower than a "native neurotypical" and more mentally taxing.  They won’t be able to socialize for as long without breaks and unexpected social situations can throw them for a loop.  For example, I’m great at business meetings because I know the social expectations and reactions needed.  Put me in a party situation, though, and I’ll quickly get overwhelmed and will try to find the nearest exit.

Just as an aside, saying that someone has Asperger’s isn’t an insult to anyone.  Adults with Asperger’s aren’t criticizing their parents for "not doing enough" or for "being bad parents."  The days of Asperger’s being blamed on "refrigerator mothers" is long over, thank goodness.  While we don’t know exactly what causes it, our best guess is that it is mostly a matter of genetics.  You wouldn’t blame parents for "giving" their child Asperger’s Syndrome any more than you’d blame them for giving their child juvenile diabetes.

On a personal note, I recognize that I’m not actually diagnosed with Asperger’s Syndrome.  However, while reading book after book on Asperger’s Syndrome to figure out what was going on with NHL, I quickly found the descriptions all too familiar.  It was like those books weren’t just written about NHL:  they were written about me also.

I’ve long thought of myself as "different" from other people.  I’ve blamed bullying for "stunting my social growth", but if it was just that then I should have "caught up" by now.  After all, it has been twenty years since I graduated high school.  However, while I’ve gotten better, I still have moments where I just get overwhelmed, or locked into something.  Sometimes, I can recognize what is happening, but all too often I just can’t control it.

I could go for a diagnosis.  I know adults who have.  However, money is tight and a diagnosis wouldn’t be cheap.  Even if I got one, it wouldn’t help NHL at all.  So, until money is no object, I’ll remain an "undiagnosed Aspie", but will use my experiences to help my son.

(Side note:  Though this online Asperger’s Syndrome test isn’t conclusive, it is pretty interesting.  If you get a 32 or above, you likely have Asperger’s.  I got a 36.  When B took it for comparison purposes, she got a 10.)

We know that NHL is going to be a success at anything he puts his mind to.  The key is giving him the help and support he needs so that he can get up to speed socially as well.  There is no shame in saying he has Asperger’s Syndrome.  Nobody is going to hold it over his head, deny him a job, or lock him in a rubber room because of it.  It doesn’t reflect poorly on me, my wife, my parents, her parents, or anyone else that NHL and I have Asperger’s.  It’s just a fact of life that you deal with.

Like I told NHL one day when he spotted a child in a supermarket who only had one hand:  "Everyone in life has challenges, but not everyone’s challenges are readily apparent.  That boy’s challenge is that he has one hand.  You can see that by looking at him.  Our challenge isn’t physically visible, though, so people might not see/know what our challenge is."

As a final point, I didn’t mean anything that I wrote to come across as mean-spirited so please don’t take it as that. The fact of the matter is that I just communicate better via written word than via spoken word.  All of the words are there in my head forming perfect arguments as to why things are the way they are.  Unfortunately, they tend to get jumbled when they spill out of my mouth.  Many of the words get lost and the ones that make it out don’t have the impact that they had in my head.  Furthermore, interacting with counter-arguments on the fly is a "social situation emulation" that I find particularly taxing.

With writing, however, I can phrase my argument carefully.  I can type out the words, go back and edit a few more in (in case they got lost on the way over), rearrange some paragraphs to better illustrate my point, and more.  I can carefully craft my argument before anyone even gets to see it.  When counter-points are made (in a written reply), it doesn’t matter if my "emulation" is running slow.  I can counter the counter-argument at my own speed without the individual standing there, growing impatient as to why I haven’t answered yet.

Of course, there is no way that I could fit everything about Asperger’s Syndrome in one letter just as there is no way I could fit every single reason why NHL is an Aspie or every last instance where NHL’s Aspie nature was readily apparent.  Furthermore, dealing with other people with Asperger’s Syndrome is no guarantee of being able to spot an Aspie.  There’s a saying in the Autism community:  If you’ve met one person with Autism/Asperger’s Syndrome, you’ve met one person with Autism/Asperger’s Syndrome.  Sure, many with Asperger’s will share similar general traits, but the specifics and which traits are present vary from person to person.  Just like every neurotypical person is different from every other neurotypical person.

NOTE: The image above is a combination of an Autism Awareness ribbon icon created by Melesse which comes from Wikimedia Commons and "Paper,Write,Pen" created by aungkarns which comes from OpenClipArt.org.