Blogging Autism

life with two autistic boys

Savage Hate - Shock Jockism Spectrum Disorder

Posted by David Croft on July 22, 2008

I have come here today to talk about a serious social problem.  A supposed “epidemic” sweeping the United States and even being exported beyond its shores.  I refer, of course, to Shock Jockism Spectrum Disorder (SJSD), characterized by the inability to utilize the filter between brain and mouth and the insatiable needs to both offend and to do so on subjects about which you know nothing.   Look at Michael Savage’s latest invective:

“Now, the illness du jour is autism. You know what autism is? I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is.

What do you mean they scream and they’re silent? They don’t have a father around to tell them, “Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.”

Autism — everybody has an illness. If I behaved like a fool, my father called me a fool. And he said to me, “Don’t behave like a fool.” The worst thing he said — “Don’t behave like a fool. Don’t be anybody’s dummy. Don’t sound like an idiot. Don’t act like a girl. Don’t cry.” That’s what I was raised with. That’s what you should raise your children with. Stop with the sensitivity training. You’re turning your son into a girl, and you’re turning your nation into a nation of losers and beaten men. That’s why we have the politicians we have.”

This was segued into  from a rant against asthma sufferers who are somehow in it for the money.  You know - Big Asthma.

Yes, more and more people are being recognized as suffering from SJSD, but did you know that in over 99% of these cases, they are frauds, fakers, charlatans?  They do it not because they have no choice, but because nobody has said to them to cut the act out.  Nobody has told them “don’t sound like an idiot, putz.”  Or, if their fathers ever did care enough to say such a thing, they didn’t care enough to make it stick.  Medical science can’t find a single shred of physical evidence to account for even the existence, never mind the disturbing prevalence, of SJSD.  Michael Savage didn’t have to say these ignorant things about autism and kids with it.  Just like Howard Stern and Bill O’Reilly and Sean Hannity don’t have to be total douchebags.  There is no hardwired brain chemistry requiring these people to behave like obnoxious assholes: they do it for the ratings.  They do it for the money.

Fortunately, folks, there is a cure.  It’s a cure that doesn’t work for autism, but one a lot of parents try anyway when it first becomes apparent that something odd is up with the young one.  We tell ourselves “he’s just a little slow, but he’ll catch up with the other kids”, and pass off their odd behaviours as just that - individual eccentricities rather than indicators of autism.  We learn otherwise soon enough and hopefully embrace autism and our kids wholeheartedly.  No, denying the existence of autism doesn’t change the reality of it at all.  But unlike autism, which is here to stay, Shock Jockism Spectrum Disorder literally disappears if everybody just ignores it.

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Who’s the ‘moron’?

Posted by charlenecroft on July 22, 2008

It’s hard to respond to ignorant hotheads who think they’ve got the whole world figured out.  I mean really, how do you have a conversation with someone who claims that autism is a “racket… a fraud”?  Given the same man claimed that asthma rates among minorities was simply because “children got extra welfare if they were disabled, and they got extra help in school” it’s not hard to realize that Michael Savage is an ill-informed shock jock, who’ experience with autism has all been mediated through the media.

“I’ll tell you what autism is,” he said on his July 16 show, “In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is. What do you mean they scream and they’re silent? They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.’ “

Well, Mr. Savage, thank you so much for clarifying that. I didn’t realize the “cure” for autism was this simple.  You know, you should really write a book… There’s a lot of money in autism cures these days…

But you can hardly blame the guy for his ignorance, I mean his father sounds like he was a real dick… “If I behaved like a fool, my father called me a fool. And he said to me, “Don’t behave like a fool.” The worst thing he said — “Don’t behave like a fool. Don’t be anybody’s dummy. Don’t sound like an idiot. Don’t act like a girl. Don’t cry.” That’s what I was raised with. That’s what you should raise your children with. Stop with the sensitivity training. You’re turning your son into a girl…”

So you are basically saying that girls are idiots?  Or that girls are autistic? Or what… you’re all over the place with the groups of people you want to offend…

If you were the least bit informed about autism you would understand that the screaming comes when the lights are too bright, or the sounds are too loud, or there is just simply too much stimulus… the silence comes because for the most part, human language is complex and confusing if you have the type of brain that can only take things literally… and that 99% of these kids are not idiots… they are highly intelligent people who are wired differently than the rest of us.  It is our idiocy for not being able to communicate with them… not the other way around…

You have to take stupidity like Mr. Savage’s lightly.  Unfortunately, his comments got picked up and now, instead of being contained to the small proportion of his regular listeners, people all across the planet are having to be subjected to his ignorance.  And once again we revisit a 1950’s mentality about autism… remember when it was called “refrigerator mother syndrome?”  Savage seems to believe that autism is the result of bad parenting… perhaps he should read some research from 2008…

When questioned about his comments from various media outlets, Savage stood by his remarks, “It is an overdiagnosed medical condition. In my readings, there is no definitive medical diagnosis for autism.”

Well, if this is true, then the same has to be said of schizophrenia, and depression and anxiety… as the definitive medical diagnosis for autism is through the use of the diagnostic criteria in the DSM-IV, the same manual used in the diagnosis of all “mental health” and “personality disorders.”  Autism is a state of being marked by particular characteristics, which manifest in one extreme or another on a case by case basis… saying that these kids are “faking it” and that all you have to do is tell them to stop… is like telling a schizophrenic that they don’t really believe the Queen of England is trying to recruit them for her military takeover of Canada, so they should just cut out the delusions…

The irony in Savage’s comments is that he displays such a complete and utter lack of empathy for the people and familys he’s attacked, that he himself appears to be socially retarded in his own right… to which I will say Don’t behave like a fool, Mr. Savage… Don’t be anybody’s dummy. Don’t sound like an idiot…

Posted in Autism | Tagged: , , , , | 1 Comment »

Artists for Autism

Posted by charlenecroft on July 19, 2008

For your entertainment…

And for your information http://artistsforautism.ca

Posted in Advocacy, Autism, Autism Culture | No Comments »

The Vacuum Monster

Posted by David Croft on June 27, 2008

Our house is calmer these days.  Izaak has become less wild, more agreeable…malleable, even.  It’s almost blissful.  I don’t want to celebrate too raucously, of course.  This change in his behaviour  is new(ish), just a couple of weeks old, and its staying power remains to be tested.

Its sources are evident, though, and two-fold.  Primarily, there is now a small pool in the backyard.  It’s nothing you could swim in, just eight feet across and a couple of feet deep.  But Izaak is a Water Child, most at home when he is splashing and laughing and intently studying the drops of water as they cascade in front of his delighted eyes.  I actually bought the pool for the boys as a Father’s Day present for me.  And in the change it has helped manifest in Izaak, I can honestly say that no other present in my life has brought me as much peace and joy as has this little pool, through the simple act of rendering my seven year old whirlwind so deliriously and incapacitatingly happy.

So that’s factor one in Izaak’s recent transformation.  Factor two comes into action at those times when his temperament and temper revert to Old Izaak: the screaming and kicking and hitting and pushing Izaak, the willful and enormously strong Incredible Hulk Izaak that he becomes when things don’t go his way - a lego block refuses to stay in place, Mom leaves the house at an inopportune time, it’s time for bed, it’s time to get out of the pool, he can’t have a freezie now - in short,  when some nuance of his ideal world goes askew or fails to materialize.  Those are the times when he becomes the monster, when I have to protect my face and head and (in response to a recently developed strategy) my genitals from his blows while simultaneously protecting the back of his head from the walloping he’s likely to start giving it on the floor or wall.  But not lately, like I say.  Not so much, anyway.

There’s a new sheriff in town, you see, and he lives at the top of the basement stairs.  He is The Vacuum Monster, but we call him ‘The Vacuum’ or simply a reverential ‘It’ when we mention him to Izaak.  Threaten, perhaps, is a better word than mention.  Understand that I am not necessarily proud of this.  I’m a pretty good dad, if I say so myself, and if I wanted to cite some aspect of my behaviour that would stand as a hallmark to my Good Dad-edness, I would hope that I would not trot out the fact that I regularly threaten my youngest child with a vacuum cleaner.

“Do I have to get the vaccuum cleaner?” I ask him in a stern voice when he is screaming bloody murder at me over the fact that there are no Skittles in the house.

“Bye-bye” he breathlessly and meekishly says, suddenly subdued.  “Vacuum is all done,” and he bolts up the stairs to his room, shutting the door behind him.

“It’s going to be time to get the vacuum,” Charlene will say in a similarly stern voice when Izaak is thrashing about at bedtime, siezing every opportunity to slap her on the face, back, leg or any other bit of unfortunately exposed skin.

“Bye-bye,” he will timidly offer, pulling the blanket over his head.  “Vacuuming all done,” he adds from inside his cocoon.

Neither Charlene nor I understand this phenomenon, this deep and abiding distaste for the vacuum - which is actually a tiny dustbuster, by the way - that Izaak seems to have developed.  I first noticed it when Charlene and I were separated.  When Izaak use to come to my apartment, his first action on coming through the door was always to seek out the vacuum to hide it - usually between the fridge and the wall - and then to bury it with as many stray clothes as he could find.  It was clear he didn’t want me vacuuming.

But it never really hit me that it could be a tool for manipulating him.  We have spent a lifetime - his, anyway - bending to Izaak’s will and only ever rarely bending him to ours.  It was a reverse of the usual parent-child relationship, definitley a reverse of the relationship we have with Izaak’s older brother.  Gabe may not always like the fact that we are his bosses, but he is always at least aware of the fact.  It is the first and most inescapable law of Gabe’s existence - that Charlene and I are his ultimate Lords and Masters.  He knows we can impose Consequences.  Consequences - vague and nebulous consequences, reinforced by the periodic removal of a televison from his room, or a temporary banning of his Internet access - are Gabe’s Vacuum Monster.  “Do we have to talk about consequences?” I’ll say to Gabe if he’s being unreasonably disagreeable, and he will almost instantly (if grudgingly) come over to the side of reason - which is to say, my side.  The point of which is that, until we realized we could use fear to defeat Izaak’s will, we thought we were powerless against him.  I didn’t even know he felt fear - before The Vacuum Monster.

Before its elevation to Monster status, the vacuum use to live beside the fridge, but we noticed that Izaak was reluctant to enter the kitchen.  Sometimes he would just adamantly refuse to come into the room unless we took the vacuum from it first.  This sort of coincided with our constant and futile attempts to keep Izaak from going into the basement, which is not an appropriate place for him to play, and the idea arose that if the vacuum was stored at the top of the stairs, then we could kill two birds with one stone.  Izaak would then feel free to come into the kitchen but be dissuaded from descending the basement stairs because to do so, he would have to walk past the Vacuum Monster.  It worked like a charm, and it wasn’t very long before we were trotting out the threat of the vacuum at times when the Hulk came out in full force.  Which also worked like a charm.

We’re not even sure what it is about the vacuum that bothers or threatens or scares Izaak so.  He has some sensitivity to some sounds, and has reacted unfavourably to the operational sounds of hair dryers and heaters and drills in the past, so we expect that his problem with the Beast is actually with the sounds it makes.  No matter the cause, though, it is too valuable a tool to under utilize.  But I felt bad playing on his fears with our threats, and said as much to Charlene.

“Why?” she said, “it’s no different from how our mothers use to threaten us with wooden spoons.”  Charlene and I each have memories we have shared regarding our mothers and wooden spoons and unfulfilled threats.  And it was true, this wasn’t really any different.  Or maybe it was, because Charlene continued.  “And besides,” she said, “it’s not like we’re threatening violence with it.  We’re just threatening to clean.”

And that was that.  The Existence and Usefulness and Morality of the Vacuum Monster were all justified.  We will call on his services as need be for as long as his services are effective.  And that will be when Izaak no longer repsonds to the threat with a retreat and a meekly proferred “bye-bye”.  When he calls our bluff, we are lost.  That’s the final problem with empty threats - we have no idea what to do if we actually have to call the Vacuum Monster from his basement lair.

Posted in Autism | 1 Comment »

Que Sera Sera

Posted by charlenecroft on May 19, 2008

Sometimes, when life starts to throw unexpected things at me, I feel a little autistic myself.  I like my expectations to be fulfilled as much as the next mom… but we all know that life is full of the unexpected, and I often find myself trapped in anxiety about all those unexpected things that I don’t even know about yet… but can forsee as coming to fruition.  Ridiculous really, to be caught up in free-floating anxiety about the potential problems that may come about… but it’s hard to dismiss precariousness, even if we are told over and over again “que sera sera”; the future is not ours to see… or control.

I wish I could explain “que sera sera” to my kids.  They really want me to be able to see the future.  I know this because they want me to be able to tell them at any given point on any given day in any given present, what is going to be happening later.  Izaak, for example, is obsessed with lists.  Every morning, without fail he brings either Dave or I a piece of paper and a p-e-n-c-i-l (because he spells things more than he says them) and wants a list of what the day is going to look like.  On school days this is fairly easy, the routine is fairly predictable.  I can make a 20 point list just for our morning habits… these lists calm him in an unbelievable way… even though we run through the same drill over and over… for some reason, he needs to see this drill in writing… he needs to see his life ordered in a list.

The weekends are another matter all together.  The long weekends… another still.  Most Saturdays, I don’t even know what is going to happen… if we are going to go out, if someone is going to come visit, if he is going to be in a good enough mood to go for a walk without flopping to the ground or trying to take off, if we are going to have enough money to take them for ice cream… routine is usually unpredictable on the weekends.  It can get frustrating being brought paper and a pencil at 5:00 in the morning - before the coffee is even brewed and my head is clear - and asked to make a list of what is going to happen that day.  And I hate making lists that end up being wrong.  I hate setting expectations for him that end up, for whatever reason, not working out in the way that they are supposed to. 

Lately, there has been the added element of moving into the disruption of life.  Plus, after 6 months of on again - off again “sleepovers” with Daddy, we have been reunited as a family, just as he was getting used to our non-cohabitation.  So, it is totally understandable that the little guy has been out of sorts this last month.  The house he has known for the past two years is emptying, slowly but surely, as we prepare to move to a new house in a new neighbourhood with these old, but new, living arrangements.  We decided that a slow transition would be better, though now, I’m not so sure.

Because a slow transition suspends him in the limbo of unpredictability.  Actually, it suspends all of us in the limbo of unpredictability… and because we are all a little autistic in this house (even if not diagnosibly autism, the environment often forces the non-autistic parts of us to lean towards the autistic parts of us)… this can cause tension and anxiety that ripples throughout the daily routine of life.

Fortunately this slow transition period is almost over.  We hope to be moved into the new house by June 6th… and with the help from the good folks at the IWK, we will not only be transitioning into a new space, but into a new way of life.  One that helps both the kids and their parents realize the joys of routine and predictability.

Dave and I have often stated how completely disorganized we are.  For a long time, we have desperately tried to integrate this disorganization into our routine.  If you are an organized person, this may sound like a stupid thing to say, but if you are a disorganized person, you have probably fell back on the “order in chaos” assertion yourself.  But, Izaak’s will and need for predictability and routine is far stronger and necessary than our disorganized habits. 

“Oh why can we not bend our children to our will like the parents of ‘normal’ children can,” I lamented the other day when Izaak won yet another fight about the presence of Treehouse TV at 7:00 in the evening.

So, the kids win.  And we have to start getting into new habits and routines ourselves in order to bring a little bit of psychological security to our kids.  This will perhaps be the hardest thing we have ever tried to do… and certainly the biggest most sweeping change to the order of the Croft family.  Funny thing is, since both Dave and I have inclinations towards being complete and utter control freaks, while this new regime may relax the kids, by providing them with clear schedules of the day… it will most likely make Dave and I far more rigid in our own need to control our environment and each other.

Oh well… que sera sera, as they say… que sera sera… we’ll see what happens…

    

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Flight risk…

Posted by charlenecroft on May 9, 2008

It’s 5:30 am.  About an hour ago I was awoke with a loud knocking on my door.  Still half asleep I crawl out of bed… all the lights in the house are on… I think briefly about Izaak… he is in our bed right?  Looking out the window I see a cop car with the spotlight aimed at the house.  Heart rate increases… I open the back door to a friendly looking RCMP officer.

“Is your son Izaak?”

“Oh my god…. yes… where is he… do you have him?”

Panic… panic… This is not the first time the little bugger has escaped.  Once on my mother and once we thought he had escaped… called 911 only to find him hiding in the closet while on the phone with the dispatcher. 

“Yes… he’s in the car.  The military police found him walking down the street.  We’ve had him for about an hour and eventually found him in the system”

Oh my god… oh my god… as I approach the car I ask, “Is he naked?”  No, at least he still had his pants on.  No shirt though… no socks… no shoes…

There is a lady cop in the backseat with him who emerges as they let him out.  They ask me if we have any way to be notified that he has left the house… well yes, we have alarms on the doors, but this time he didn’t leave via the door.  This time, he went and got his little canvas chair… climbed up on the deep freeze… open the window that it was situated under… dropped the canvas chair out the window and then proceeded to use it as a stepladder to freedom.

Lordy lordy lordy… Why do I have the feeling that this is not going to be the last time Izaak is brought home at 4:30 am by the authorities?  I’m dreading puberty…

 

Posted in Autism, Parenting | Tagged: , , | 2 Comments »

More autism and evolution theory (with research review)

Posted by charlenecroft on February 5, 2008

So, to summarize my theory on autism, I believe that Autism is the next step in human brain evolution, one which is not entirely random or based on “natural selection”, but is being nurtured by the widespread use of chemicals in our enviroment.

Laugh at me if you will… but at least follow me through some of the finer points that have led me to this belief. 

First of all, recent information has emerged suggesting (finally) that us humans haven’t stopped evolving.  It seems absurd to me that such a statement is a new idea… but there it is.  Not only have we not stopped evolving, but this evolution (changing of genes) may be responsible for a number of the modern diseases and mental health issues that plague our stressed health care system today.

Researchers are pointing to things like music, diet, even plate tectonics.  Our genes are mutating and adapting at an astonishing rate, partiularly in the area of our brains… their size and complexity:

“In 2005, University of Chicago geneticist Bruce Lahn reported that two “new” gene variations involved in brain size and complexity are still a work in progress. One emerged about 37,000 years ago and is now present in 70 per cent of humans; the other, only 5,800 years old, has spread to 30 per cent.”

Now, we know that Autistics have bigger brains, and that their brains work differently than most of us, particularly in their left/right brain functioning

We also know that Autistics are genetically different than the rest of us, and a new study suggests that not all of those genetic differences are being inherited… some are occuring “randomly”:

“In most cases, the abnormality on the chromosome was not inherited from a parent but occurred de novo, happening during embryonic development. This means the chances of having another child with autism may be closer to 5 percent, as opposed to 50 percent if the abnormality was inherited, the researchers explained.”

In fact, the same study claims to have found one of the genetic differences for 1% of the whole Autism population.

There have also been studies which suggest that the chemicals in our everyday environment are altering our genesA 2005 article from Duke University explains how:

“These startling scientific discoveries illuminate the emerging field of epigenetics, in which single nutrients, toxins, behaviors or environmental exposures of any sort can silence or activate a gene without altering its genetic code in any way. Rather, the environmental exposure triggers a chemical change in the body or brain that mobilizes a group of molecules – called a methyl group. The methyl group attaches to the control segment of a gene and either silences – or alternately activates – the gene. Either way, the gene veers off its intended course of activity.”

And we also know that children are the most susceptible to environmental toxins.

Funny thing, on the weekend I was talking to a friend of mine who is a hairdresser about shampoo.  She noted that baby shampoo is the worst for chemical additives and alkalines.  Then, serendipitously, a study emerges in the headlines yesterday about the potential danger of baby products like powders, shampoo and lotions because of the presence of phthalates.  So this morning I googled autism and phthalates and got 12,800 hits, including this little gem by Donna Williams.

So, here we have a product (baby shampoo) being directly applied to the permeable heads of our infants, to make them smell like a baby…

Now, it seems to me that baby products causing autism, is about as likely as the MMR vaccine being the single environmental trigger for autism gene activation… A notion that I hope we can finally stop pouring millions of dollars of research into after yet another study finds no reliable link between the two.  However the specific link between baby products, phthalates and autism is something that warrants new research directions… Not only that, but a possible class-action suit against Johnson and Johnson could be fun.  And if the new TV series Eli Stone is to be believed, parents of children with autism can win hail mary lawsuits if they play on the heartstrings of juries.

So… to tie this all together…

Chemicals alter genes, our genes alter our brains in size and comlexity, and people with autism have different genes and brains than those without it.  The rate of autism is so high now (and increasing by most accounts) that, unless we are facing a birth rate crisis in the next 50-100 years, the selective traits of autism genes related to brain functioning (visual learning, sensory sensitivity, literal language comprehension, difficulty reading social cues, diffuculty with face-to-face interaction) are going to become more and more predominant in the general population. 

Interesting that all of these traits are highlighted as problems with computer-mediated communication as well.

In any case, this is one serious crackpot theory :)

    

Posted in Accepting Autism, Aspergers, Autism, Evolution, Research, Theory, Understand Autism | Tagged: , , , , | 3 Comments »

Transitions…

Posted by charlenecroft on December 13, 2007

My oh my… time flies when life gets in the way.

So for reasons which are far too complex to get into this evening, David and I have separated.  He has moved out, and for the time being, I am a single mother and the primary caregiver of the boys.  Unbelieveably, this series of events was initiated just about two months ago.  It was somewhat mutual and we are doing our best to maintain civility and, more importantly, a solid friendship. 

So now that that’s out of the way… here’s an update on the boys.

Izaak is doing extraordinarily well these days and, much to my dismay, I believe it is the medication which is working.  He is still taking a dosage that is slightly below the average (.75 mg/day), but he is a much more manageable kid.  He still has his moments… like today in the grocery store when he flopped and dropped and screamed and kicked for ice cream while all the busy xmas shoppers stared.  Some gave dirty looks, some smiled in sympathy.  Luckily I had Leslie there… Leslie who has been my saviour for the last month providing me with reliable and quality respite, childcare and pretty much anything else I might need her for.  Leslie is leaving me at the end of the week… but childcareand mother’s helper worries are a blog for another day.

In any case, the medication is not a magic fix that has made Izaak “normal” by any means, but it has meant that the meltdowns are not so messy and the downtimes are less frequent and not really lasting.  I suspect the dose increase to come next doctor’s visit though… he’s a growing boy, and, I suspect internally feeling the turmoil associated with the family breakdown.  He’s talking more now, still simple requests… but his receptive language is phenomenal.  He understands (and follows) complex instructions and natural speech patterns. 

Gabe is taking the separation a little harder, externally anyway.  He’s developed a bunch of negative behaviours, like ripping paper into teeny tiny pieces.  And he rips everything… books, receipts, flyers, newspapers, letters… I think the appeal is sensory.  Perhaps the sound or the feel of the tension as it rips… I also think that most times he doesn’t even realize that he’s doing it. 

He’s definitely been a little sadder these days… a little more defiant and a little less Gabe. 

I hope that this is just a phase… he is almost 10, the hormones are going to be a little jumpy in there.  I hope that he’ll adjust… that once a routine gets re-established he’ll come back around.  And I really hope that this separation does not traumatize him for life.

It’s going to be a whole season before any of us get to experience stability though.  The next 6 months are going to be a series of moves and changes… including a huge one from suburbia to urbania.  Next fall the boys will be attending a city school, living in different dwellings, and adjusting to life in an apartment. 

So that’s that…

This blog has been terribly neglected, and probably remain so until into the new year when we all get our bearings.  Both Dave and I are going to continue to maintain this blog, it’s just that now it will extended perspective into two different households, rather than just one.

I posted a new video on the Blogging Autism YouTube Channel… and it’s so wicked that I’ll post it here too…

 

Keep us in your thoughts friends… it’s going to be a rocky road to paradise.

Posted in Autism, Parenting, YouTube, personal | 1 Comment »

What causes autism? One mother and critical thinker’s opinion

Posted by charlenecroft on September 16, 2007

***DISCLAIMER***

Before you read the following blog, I want you to understand that it is merely a theory, my theory about the increased prevalence of autism in our children. I am an amateur-expert on autism and what I about to write has no scientific data to back it up… yet that is.

*********

So many times I’m asked, “So… do they know what causes autism?” My answer is vague and probably confusing, and largely depends on my willingness to get into it with who I am interacting with. The simple answer I give is, “No… They don’t know.” A little more obtuse, “Well, they think they’ve identified some markers, but nothing conclusive… There are many more theories than reliable scientific data.” And if I’m feeling particularly chatty, I’ll answer something like, “Well no, they don’t know… but I have a bunch of wacky theories.”

But before I get into those wacky theories… This is what they do know, or else, have pretty much accepted, about autism.

There are many genetic variations in people who are on the autism spectrum. In fact, there are so many variations that it is hard to pin it on any particular one. They’ve isolated areas on DNA strands where this particular section is missing, or that particular area is reversed, but they have yet to find the muchly sought after “Autism Gene.” Which is just as well for now, to prevent the Autism pre-pregnancy screening process from really taking off.

People on the spectrum have different brains than “neurotypical” people do. From my limited understanding of neurology, these differences mostly occur in the brain’s immune system, it’s in the gray matter. There is enlargement in some areas, different levels of chemical production, and different synapse firing processes when exposed to certain stimuli.

People on the spectrum often have gastro-intestinal issues. This sometimes manifests as food allergies to gluten and dairy.

And finally, some people on the spectrum have elevated levels of toxins in their blood, like mercury… which has short-sightedly been associated with a preservative that used to be used in the childhood MMR vaccination.

So, this is what I would say, on their behalf, for a really in-depth, uncontroversial version.

And without further ado… the Wacky Theory!

It is almost* a scientific fact that geeks breed ASD more than non-geeks. What do I mean by geeks? I mean the 70’s-80’s version of geek… the too smart for their own good know-it-alls who had little to no sense of how to interact socially with the plastic and superficial society that we had built around ourselves. They turned to computers and machines for a comfort and predictability that they could not receive in the social world. The social aloofness of the withdrawn AspieGeek was still not in an environment to allow the “Geek Mutation” run away reproductively. But that was all before the Silicon Valley Revolution. All of a sudden geeks everywhere were making oodles of money, those reproductive traits which were once associated with “loser” status became very appealing. To be geek was chic, and the breeding began.

Not only were these antisocial, rational, programmer types of personality appealing for mating purposes, but they were in demand in the market as the new production class.

In addition to the genealogically linked cases of ASD more random mutations were occurring due to the introduction of more synthetics into our very western lifestyles… think Blinky, the three-eyed fish kinds of mutations in the brain genes… the single genetic link was harder to find because there simply wasn’t one single one that could be conclusively linked to ASD.

ASD is a spectrum disorder because it manifests in so many different ways and combinations of ways. Key developmental areas that are advanced in many of those on the spectrum have to do with information processing and deciphering visual symbols. While the spoken language can be a bit too abstract, the written language and visual representation of language assists someone on the spectrum to order their world.

The ability to deal with written symbols is somewhat paradoxical with another common trait which has to do with the inability to deal with social and emotional symbols coming from other people.

That instinctual need for order is so overwhelming, because the brain’s filters are different in that they are more absorbent and have a larger capacity to store information. Cognitively, the brain works more like a system of binary signals. Yes or no? 0 or 1? Pleasing or adversive? The brain take snapshots of every experience, and those mental snapshot experiences become fused with the present.

Perhaps it would be fair to say that the ASD brain is unique because it mostly concerns itself with the present. You don’t necessarily think about the past, because it is just a part of the present, and worry about the future is less related to a generalized sense of anxiety about abstract concepts like death and romance, and is more rooted in specific social and intellectual problems that arise throughout the course of life.

Now, I am not autistic… but based on things I have read by those on the spectrum who have written accounts of their perception of the world and reality… I think that there is some element of truth in these statements. And I think that they can be linked to the reasons why those on the spectrum make such good programmers and visual artists and engineers, and architects, and mathematicians. Perhaps the best our society has had to offer.

So my answer to “What causes autism?”

A genetic mutation, either random, but more likely inherited, which manifests depending on the environment that its traits will develop in. Toxins and features in our outdoor and indoor environments interact with the mutation, as well as technology and social interventions. Taken together, these elements combine in different ways, either enhancing or diminishing particular characteristics of the disorder, creating different levels of normative “functioning”.

If we take a step back and compare the cognitive states of those on the spectrum to our own, we can perhaps start to see how our technologically isolating world nurtures our own communication mediated through digital symbols, text and information. We can perhaps see how the bombardment of information and visual representation can make our brains go mushy unless we start to filter and constructively organize that information in our storage and retrieval systems. That sensory overload can cause us to be moody and give us headaches and sometimes result in emotional meltdowns of our own. We know how frustrating it is to try and articulate a thought or a feeling that we are having while experiencing a communication breakdown due to vagarious language and inability to decipher social cues. As “neurotypical” people we experience flashes of the spectrum everyday.

We all have “autistic moments” in our lives…

What causes autism?

Society does.

Posted in Accepting Autism, Aspergers, Autism, Theory, personal | 9 Comments »

Taking the Plunge

Posted by David Croft on July 29, 2007

The average weight for a six year old is about 45 pounds. Izaak tipped the scales at 62 pounds this week when they weighed him at the hospital. But don’t get the idea that this is a chubby kid - he has “slimmed”, even, as the doctor noted, having spent the last year converting every ounce of fat on his body into muscle. He didn’t do it intentionally, of course. An hour of happy dancing here, twelve hours there, and pretty soon his muscles are bursting their seams. He is a mighty force, when he wants to be, and growing mightier. The problem is that he often does want to be a mighty force, usually when he isn’t getting his way.

Two weeks or so before school ended in June, Izaak broke his teacher’s assistant’s nose when he kicked her in the face. It wasn’t malicious, it was unintended. He was frustrated and thrashing around as he is prone to do when in that mood and the TA was trying to calm him down and got her face in the wrong place at the wrong time. And BAM! One broken nose later.

He blackened my eye around the same time with a haphazardly thrown fist, and split his mother’s lip open one night when she was trying to get him to bed and he simply didn’t want to go. When he wants to use the computer his brother is using he has a very simple method of dealing with this: he grabs Gabe by the hair, pulls him to the floor and takes a seat in the newly vacated computer chair. He is a gentle giant, most of the time, but he does not take no for an answer graciously, and he is not the most patient turn taker. At least once a day, these days, he has been having fits in which he loses control of his temper completely, lashing out at the nearest person to him. This is almost always me. Almost. And you know something? It’s starting to hurt. The lashing out is not new for Izaak. He has been a mostly gentle giant all his life, but prone to sudden outbursts for as long. But the intensity of the outbursts has grown, as has the strength behind them.

All of which I say by way of trying to justify the fact that Izaak began taking an anti-psychotic medication this week even though he is only six years old. But believe me, I am not trying to justify it to you, rather to myself and to Izaak’s future self. I appeal especially to Izaak’s future self. The whole notion of medicating our son does not sit well with us at all, but it is not a decision that we came to lightly.

As I said, Izaak’s sudden mood shifts and accompanying outbursts are not a new phenomenon. He has been like this all his young life, and the subject of possible medication was first broached two years ago. We even went so far as to have a prescription filled in February 2006. Izaak was given one dose and I was so overcome with guilt about it that I couldn’t bring myself to sanction any further use of the drug. We hadn’t tried enough other options to run to the meds, I thought. And Charlene agreed. Since then, we have played with his diet, alternately suspecting lactose and sugar as the causal culprits in Izaak’s emotional volatility. We have had professionals working with him in house, in school, in hospital. We have tried regulating his sleep homeopathically. We have tried rewards and we have tried punishments. We have tried, very hard at times, just to hold it all together, not always entirely convinced that we could. And finally, this week, we gave in and tried medication for real.

The early prognosis is encouraging. Somewhat.

Izaak began the medication on Thursday morning, and on Friday I had the first violence free day with him that I have had in quite a while. He listened to what I said. He waited for things he wanted. he came inside when he had to come inside. He didn’t hit me, didn’t kick me, didn’t try to bite me once. That last sentence was such good news that it bears repetition. Not once on Friday did he hit, kick or bite me. And because turnabout is fair play, I didn’t bite him either.* It was a good day. A great one, even.

Friday night was another matter altogether. As some familiar with Izaak (and/or this blog) know, going to sleep and staying that way are not counted among Izaak’s favourite pastimes. On Friday, he had his usual bedtime of eight-eight-thirtyish-oh-jesus-is-it-nine-already-is-this-kid-ever-going-to-fall-asleep, but he was wide awake again at 1:30 in the morning, and determined to stay that way besides. Charlene and I have devised an imperfect turn taking system where Izaak’s nocturnal adventures are involved, and on this occasion Charlene was at bat. Three or so in the morning was when the furor roused me from my slumber, and the night that ensued was an all out war between me and Izaak, between Charlene and Izaak and between me and Charlene. It was a war that ended only when Izaak finally fell asleep in the minutes before sunrise, but one that Gabriel (who sleeps the sleep of the dead) was thankfully able to slumber through.

Saturday morning, the house was filled with surprisingly good spirits. We had all had a little bit of sleep, and the shock of the battles of the night before sat with both Charlene and I. We were Europe after the end of World War Two, collectively stunned that we could have committed such atrocities and newly resolved to work more closely together for our collective good. You know how you always hear that things could be worse? That night will remain in our family’s history as the night where nobody said that.

Saturday was bliss. Saturday night, near likewise, although he did go into a bit of a meltdown during which he kicked Charlene in the forehead and me in the throat.** But the tantrum was shorter than others, and less extreme. He was also somewhat difficult to get to sleep - the only place he was willing to lie down at all was on the living room floor, but (because we are gradually learning to choose our battles wisely), this is where we finally let him sleep. And he slept a solid eight hours (almost unheard of in Izaakland), enabling the rest of us to do the same.

Today is Sunday: so far, so good. The drug treatment is getting mostly positive, if tentative, reviews. Izaak remains cooperative and communicative, two adjectives I would not have associated with him last week. I am of mixed feelings regarding the use of the medication because I am afraid it will fundamanetally change who he is, when in fact all we need to do is modify the destructive behaviour patterns which - although alarming and problematic, are not by any means Izaak’s most pervasive characteristics. He is a happy child, and an artistic and musical one. I am afraid that the drug will make him placid instead of happy, lethargic instead of artistic, but there are no suggestions yet that it will have these effects. I am also afraid that he will have to take the medication for the rest of his life. I have to take a mind altering medication every day, myself, and though I am now resigned to the fact, I am still keenly aware that some dark but fundamental piece of me is missing and that the unmedicated me is pretty unbearable to be around. That’s not a sense that I care to pass on to my kids. We have decided on a six month trial with the drug for Izaak - barring the appearance of undesirable side effects. After the six months we will have the option of taking him off the medication, an option we have already decided to exercise. There is some hope that the medication will help enhance his language abilities and that, six months down the road, he will be better able to express his wants and needs, and so less likely to be subject to the dramatic tantrums that are almost certainly caused by his communication barriers. That is my greatest hope, in any case. That in half a year, we can say goodbye to the medication and the violence forever, but glad (and guilt free) that we used it, because of the healthy, happy superman it has left in its stead.

*For the record, I have never actually bitten Izaak, even if I have fancifully considered it from time to time as his teeth bear down into my flesh. I think this crosses my mind because of a story my father tells from when he was a young man and a horse trainer. There was a viciously mean horse that would bite any person who came near him. He one day sunk his horse teeth into my father’s flesh, whereupon my dad grabbed the horse’s head and suck his own teeth into the horse’s nose. As the story goes, the horse never bit again, and horse nose tastes like chicken.

**It is an indication of the standards in my house that I can describe a night as “near bliss” because I only got kicked in the throat once.

Posted in Advocacy, Autism, Parenting, Therapy, Understand Autism, personal | 3 Comments »