The Sixth Year (and moving on)

I have been blogging about autism and my muse Adam, since 2005. He is my inspiration in life. How a child so small give gifts so large, well, I am always amazed. I guess it's why we become, and are overwhelmed, to be parents.

Adam is turning six this year. For me, it's rather significant in the autism-stream, because six was to mark that turning point that the doctors told us about -- if he didn't talk by six, he would always be autistic, prognosis wouldn't be good...etc., etc. Six was the cut-off year for the ABA that we never ended up using. Six was the age you were supposed to be cured of autism so you could enter school. So, for many parents, that number 6 is ominous. Too many parents work and struggle to beat the clock. We drive ourselves (and our kids) nuts, losing precious time during those toddler years, because, hey, our toddler's are not "normal," and we are irresponsible if we do not change the course.

Even the strong of heart feel the pressure sometimes, and if we are confident enough as parents to NOT care what the medical profession proclaims about autism, we still know very well the struggles of being accepted and obtaining the best education possible for our children.

Well, six has now arrived. We were told by ABA advocates "he may be a cute little picsher now, but just you wait... that hand-flapping won't be so cute when he gets older." I know, I've been hard on you ABA folks. It's just that I think you've been very hard on our kids. Who the heck cares about hand-flapping when we should all care about having our kids included in our communities? I think we all have a much more important agenda to be working on.

Six is coming and going, and for many of you, it has come and gone. I have shown a few birthdays in the following video. Just like many of you, we have struggled with ideas, perhaps struggled more so in ignoring the fear and trying to let it go for Adam's sake. We worked so that not every toddler year was wasted with worry. Six is arriving on April 11. I may not be able to write for a while due to some other reasons which I won't go into now, so I thought just in case I couldn't write this blog post, I would write it today.

Happy birthday to my dearest dearest Adam -- my son, my "boo-boo-bear," and my reason for being (peshaw Elizabeth Gilbert of Eat Pray Love -- my reason for being is my son AND I am educated and have traveled and lived abroad-- I read your book because my son said I was reading too many sad ones, and it did make me happy, by the way).

I think our little autistic people have so much to teach us. Adam is talking a little more now, he is typing and there is more to come. There is great life beyond the age of six and we've had some great years before it too.

A Year Of "Upper A's"

Age 3.

Saturday, it's my birthday. All I want is:

Sunshine
A light warm summer breeze
A hammock
A willow tree
An inspiring book to ignite

A fresh outlook
Some needed dancing (it tickles my insides)
A few cooking lessons (for the sensuality of it)
More friendship and gatherings (to put life in perspective)

Maybe it's just winter has made me feel the doldrums of routine to such an excruciating extreme and a need to shed the weight of being (not to some "unbearable lightness," mind you, but some shedding is in order 'round here), for Adam said to me yesterday when I asked:

"What do you think mommy does all day?"

To which he replied, "read sad books."

Age 5. To think Adam is turning six next month!

Huh. This mom likes to be told by my child all my weaknesses. Isn't that what in large part, children are for? Maybe it's that serious furrow that's got him thinking that mommy might be sad. It's time to lighten up with the likes of spring.

The old perm days -- me at thirteen.






High School Graduation.

I hate to think that my forties has brought that seriousness that I used to see in other middle-aged people! Yet, it's a part of life -- we have children, we worry about many things, we are really busy, we are really tired. Still, a part of me never understands why some people want to be eighteen again.

Age 24

Being young was really difficult for me. Sure, I had good times, but my youth lacked a purpose that I acquired later in life.

I watch Adam grow up fast and I also learned this week that my cousin had her first grandchild -- her daughter, I recall, who seemed to be born just yesterday. That's more than twenty years gone by in just a snap!


So Happy Birthday to me, dag nammit! I hope this year will be, to use Adam's words, "upper A!" The children in our lives are taking over the world, and they remind us just how fast time goes by.

Notes On "Hell"

Adam wrote, which we displayed in yesterday's video "think hell forgets boy," which really intrigued my dad, who sent me a myriad of hell-ish definitions and references to Thomas Mann, Plato and Socrates (index in above illustration).

What Adam knows or understands of "hell" or what he has learned of it, is very interesting and inspired my father to think about Adam's way of thinking in new ways.

We find Adam reading dictionaries a lot. He might put it on the edge of his bed, stick his head right in, lean in with his hands while using his arms to jump up and down. Others might say he is not reading at all because he has to move a lot when he does so -- but he can do this for hours. People ask me, "how did he know that word?" -- as he seems to know many sophisticated ones. Maybe this is one explanation.

I imagine he reads and learns many new words, but he is also a really good listener, even though people think that autistic children are not paying at all attention, as they seem to shift their gaze out to some kind of oblivion. I think about all the times when I used the word "hell" to describe how other autistic people feel when they are sent into special ed classes (quotes I gleaned from some of Paula Kluth's books) where often, their intelligence is "underestimated," (another word that Adam has now used). Other words, he comes up with all on his own, and it surprises me how he thinks about them. Better beware of what we say in front of our children!

Since posting yesterday's video, I also realized that "monsters" are probably Elmo, Cookie Monster and Zoe from Sesame Street, and it occurred to me today as we watched them before leaving for school as they continued to chatter away. He absolutely LOVES them, but they ARE talkative! I imagine Adam may have been comparing the monsters to the children he knows. So maybe monsters are endearing little creatures after all.

Omaasc was likely an attempt at spelling "home and school." It takes a while to condition one's eye to a child's attempt at spelling something. As this is new, it is taking me a while to think in these terms. And that's it, isn't it -- it is the ability to condition ourselves and recognize the communication that is happening every day!

And for those who don't believe that autistic children can learn or understand phonics -- Adam reads HBO as ch-bo. Boy does autism research ever have to catch up!! Absolutely everything out there is just about wrong.

Yesterday, I chanced upon a Socrates quote, "hell is other people," which was the inspiration for my father's research (a lover of philosophy). While it might be true that other people may seem like "hell" to many of us some days, I must say, the amount of people who have embraced Adam's words, and are sending him emails, well, I tend to think that we just want to be more bonded than separated. Maybe autism isn't the "hell" the media (and some people) make it out to be, but rather, the hell of a lot of heaven that we are, right now anyway, too busy to recognize.

In Adam's Words...

Adam approved the following excerpts:

A Person's A Person...

Since Adam has started typing, it's hard for me to write on this blog. What do you say to a little boy who says upon my return from a night away:

"Glad you return."

"Why are you glad mommy has returned," I ask, wondering what he will say.

"because hell forgets boy."

What do you say to that -- a boy who understands what the world is for him, or perhaps makes of him.

What do you say to a boy, not yet six, who refers to his peers as "loquacious" or that "talking is oppressive."?

What can I say to all my theories about Adam when they no longer are theories but are real with each typed letter?

No longer do I have to speculate what letters mean to him -- the fact that he loves the letter A which makes him feel "euphoric," or of his affable nature that recently revealed that "jokes are a staple for the atmosphere." Thank goodness his sense of humour is greater than mine!

What do we make of "autistic behaviour" when Adam, who has explained that when he gets ill, the reason for his constant movement is because it "makes me feel normal," -- a word many of you know that I find relative, but which is his version of normal, meaning, not ill.

What do you say when your son tells you, his baby teeth just falling out behind those still cherub cheeks just beginning to thin, "i feel numbers," but to sit and wait for more?

You see, I am waiting now, which has slowed me down a bit. Adam has begun to email his half-siblings, telling them what he did in his day. He is beginning to use the computer to communicate with others, and as for sharing his words, I must obtain his consent. So, while he can type now, I question where we all have to draw the line. What is the difference between advocating for our children and what we can talk about in public? I liken it to talking about our children with utmost respect for their right to privacy -- that not everything they say and do is for public consumption. It is why I take issue with parents who talk about how their children "hit" them in public to display autism as something terrible. (this is a special note to that certain Ontarian who ambushed me on CFRB during the Joy of Autism: Redefining Ability and Quality of Life event...how perfectly timed was that "hitting" for radio?)

Now, I've tried to be careful in the past, but certainly I am thinking of this more now -- if I ever crossed that line and what a shame it is to only be waiting for verbal or written consent. I think I always have tried to represent Adam and autism with pride. That has been the point of this blog.

I know also that we parents talk like we would at kaffee clatches, reaching out and yearning for support as we figure out how to raise and accept the special literacy -- behaviour, idiosyncratic communication and all -- of our autistic children. We have gathered together for mutual support, but I think that consent piece, that piece where no one is too little to be respected, needs to be thought about again and again and again.

For as Horton says (Adam's favorite book of late), "a person's a person no matter how small." What about, a person's also a person no matter how autistic or disabled??

You see, autism is not on display here -- if you want that, tune into Larry King Live where Jenny McCarthy, Jerry Kartzinel and Toni Braxton go.

No, our pride for who we are is simply worn on our sleeve.

Small people, all people should be proud and I may ask Adam write a review on the Horton Hears a Who movie which comes out this weekend.

Vaccines and Autism: Can the Causal Link Be Proven in Law?

In my blog post yesterday, I talked about the difference between legal evidence and scientific evidence. It is disconcerting that a CNN poll revealed today that 71% of the public believes that vaccines cause autism, despite no scientific evidence to support the link. It seems that entertainment and sensationalism without fact still guide decisions and belief. I strongly urge Larry King to put on his program a number of autistic individuals from Autistic Self Advocacy Network, ANI, AutCom and The Autism Acceptance Project to balance the story and separate fact from fiction.

In keeping, I had my step-daughter, a first-year law student, prepare for you a synopsis of how something has to be proved in a private/civil law matter. I hope it helps further the discussion of the difference between scientific fact and legal "evidence," in the matter of vaccine injury:

Vaccines and Autism: Can the Causal Link be Proven in Law?
Serena Wolfond, L.L.B. Candidate 2010

In order to prove that the MMR vaccination causes autism it must be apparent: (a) that but for the administration of the vaccination, autism would not be present, and (b) that (a) is true on a balance of probabilities (i.e. that it is more likely true than not true).

Part (a) is known as the “But For” test for causation and is the standard test for proving causation of harm in private or civil liability cases (as distinguished from criminal cases). Applied to the question of vaccines causing autism, the But For test requires the party alleging the link between the two to indicate that but for receiving the MMR vaccination, autistic individuals would not be autistic.

Of course it is arguable that multiple contributing factors either together or independently lead to a certain effect. Accordingly, if it is impossible (for reasons such as the lack of conclusive scientific data) to prove causation using the But For test, a more relaxed test for causation, referred to as the “Material Contribution” test, may be employed. The Material Contribution test maintains that if more than one factor materially contributes to some outcome, then both causes will be found legally accountable. This test would require proof that the vaccine at least significantly magnifies the probability of an individual becoming autistic.

Part (b) requires that any claim that the vaccine causes autism under part (a) is subject to the burden of proof. The standard of proof in private/ civil law matters is placed upon the plaintiff (the party claiming connection). The standard of proof the plaintiff must meet is proof on a “balance of probabilities”. In practice, this means that the party alleging that the vaccine causes autism (according either to the But For or to the Material Contribution test) must demonstrate that this claim is more likely true than not true (literally, that the likelihood of it being true is at least 51%). This private/ civil law standard of proof differs from that in criminal law, where proof is required “beyond a reasonable doubt”. However, it remains severely inadequate to claim that the vaccine may cause autism, or that there is a mere correlation between the two.

To presume or infer that the vaccine is the cause of autism simply because there is a correlation between the time that the vaccine is administered and the onset of autistic behaviours is either to commit the legal error of shifting the evidentiary burden to the defendant (here, physicians or drug manufacturers) and calling upon them to prove that the vaccines do not cause autism. Or, to appeal to the doctrine of Res ipsa Loquitur, (a Latin phrase meaning “the thing speaks for itself”) which essentially carries the inference that some fact is true, though it must still be proven. Today this type of evidence is discarded by courts.

Problems with the Vaccine/Autism Hypothesis

Everyone is aware of the vaccine/autism court ruling in Atlanta. Autism Vox gives a good summary of the recent events here.

Tonight, Adam and I will be on Global National News to say a few words about the fallacy of normalcy and the vaccine hype -- that belief that one day one's child was developing just fine until blamo -- a vaccine was given and their child was "lost" to autism.

Ah hem. We are autistic in this family and proud of it. We are not "wrong" or "abnormal" and just because some organizaton (like TACA, Cure Autism Now, DAN! and the like) says you are, doesn't make it so. Skills dissonance and inconsistency is very common in autism, and it can happen at any age.

Camille Clark made a wonderful comment on Kristina Chew's blog and I'm inclined to agree:


When Hannah was 6 months old, as the family came to grips with the likelihood that she was autistic, …”

But my question is, how much did their conversion to DAN!-ism in the months following Hannah’s apparent regression contaminate their memories of what she was like before and after the vaccines. Somewhere in the year after the set of vaccines in question, daddy began to consider becoming a DAN! doctor himself and both parents had attended DAN! conventions and they started exposing the girl to the typical quack and/or controversial treatments of that time, knowing full well, apparently that she had a mitochondrial disorder caused by a “point mutation” on a gene controlling mitochondrial function.

Then there are conflicting accounts about the timing and cause of Hannah’s diarrhea. I wonder if they tried to reconstruct a more serious sounding vaccine-implicating scenario after having contacted Shoemaker and after having been in touch with other DAN! parents for a few months. Considering that daddy was thinking about being a DAN! doctor they might have been considered celebs at DAN! conferences, etc way back in 2001.

Hannah might be as autistic as any other child, and maybe vaccines changed her by causing a fever, but her mother admits that it’s possible the same thing would have happened to Hannah without any vaccine, with exposure to virus.

And one has to wonder if mom is talking about taking the money to pay for quack DAN! therapies. If so that would be sad.

I would also be interested if we could discuss on these blogs, the difference between legal evidence -- the burden of proof, balance of probability -- versus scientific evidence. It seems that it in this court case at least, the lack of scientific evidence didn't matter.

It's about finding something to blame when you want to find something wrong. What about ditching that idea for a while and just keep growing, living and learning -- with autism?

Phone Calls

Hi everyone. I apologize if people had been having difficulty calling in to The Autism Acceptance Project's office. Something was up with our voice mail that I was not aware of so I am just getting voice mails today -- some which are a few weeks old! The problem has now been rectified.

The Autism Acceptance Project is a volunteer-run organization. Please be patient and someone will get back to you as soon as possible. In the event that your voice mail did not make it through this quirk, please call us back.