Autism Awareness: When The Puzzle Pieces Don’t Fit

In many countries around the world, April is designated as Autism Awareness Month. In the lead-up to it, I am starting to see more postings on Facebook offering autism awareness merchandise, providing little factual snippets about autism, and inviting people to “Light it up Blue”.

I am also seeing ranty posts about how awareness is NOT ENOUGH, action is NEEDED, and the Light it up Blue campaign is nothing more than a ploy to line the pockets of people working for Autism Speaks, who let’s face it, do not provide financial assistance to affected families.

Sigh. Here we go again.

I don’t have feelings one way or the other about Light it up Blue or Autism Speaks. I don’t care that they don’t give money to families, because they are an organization that funds research. I have a feeling that some of the people so vehemently opposed to them care less about whose pockets are being lined and more about the fact that Autism Speaks is not a proponent of the controversial vaccines-cause-autism theory.

Which is fine. I don’t expect people to support organizations with philosophies that differ from their own. I believe that the prime driver of autism is genetics – I wouldn’t throw my voice behind an organization that actively tries to prove otherwise.

I also wouldn’t say derogatory things about people who don’t share my views. I wouldn’t put up postings implying that those who don’t agree with me are stupid or uninformed. I wouldn’t make use of insulting terms like “sheeple”.

I would live and let live.

People tend to have reasons for their beliefs. I know for a fact that vaccines had squat to do with my son’s autism, and both of my children are up to date on all of their shots. But I would not presume to tell people that just because my kid came out of the womb with autism, theirs must have as well, and if they don’t agree with me – then, you know, they are “sheeple”.

I tend to use the phrase “autism community” a lot, as if we were all just one big happy family that just wants the rest of the world to accept our kids. At times, though, I question whether there is an autism community. Sometimes – particularly during Autism Awareness Month – it feels as if there are many different sects that are all divided. Each sect has members who are more than happy to leave others to their different beliefs, and each sect has those who are almost militant in their attempts to get other people to think the same way they do.

I am of the opinion that Autism Awareness Month should not be used to push agendas about what may or may not cause autism. I think it should focus more on the fact that our kids have autism, whatever the cause was, and they are individuals who have a lot to offer society. It should be about trying to make the world a better place for our kids – a place where they can grow and flourish and reach their full potential, whatever that might be.

How can autism parents hope to make the world accept their kids when we cannot even get along among ourselves? What kind of example are we setting for the society that we’re hoping will treat our kids with the respect they deserve?

If you want to Light it up Blue or promote awareness in any other visible way, go ahead. Whether you support Autism Speaks or any other organization, give them whatever support you feel comfortable with. Tell people about your views if you like, but graciously accept that they might think differently.

Autism parents, we’re all in this together. All of our kids have autism. Let’s be nice to each other for their sake.

(Photo credit: Ashtyn Renee . This picture has a creative commons attribution license.)

Vaccines and Autism: Where Do I Stand?

In yesterday’s blog post, I made a remark about the fact that I do not believe there is a link between vaccines and autism. One of my readers took me to task (very nicely and respectfully, it has to be said) for making blanket statements that could potentially alienate part of the autism community that I try so hard to reach.

I did clarify what I meant with the person concerned, and it all ended on a good note, but the incident made me think that this is a topic I should cover here on my blog.

The subject of vaccines is a very touchy one for autism parents on both sides of the debate, and it’s one that can create a lot of division. Each camp accuses people in the other camp of being disrespectful toward them and their views, and of trying to shove their opinions down everyone else’s throat. It’s really kind of sad, because at the end of day all of us are autism parents who are doing the best we can for our kids. Instead of being a united community working together, we sometimes find ourselves divided into these factions that argue with each other.

This debate is like any other. There are those who are almost fanatical about their opinions and won’t even consider any other possibilities. And there are those – like the person who contacted me yesterday – who want their opinions to be respected but can peacefully coexist and have meaningful dialogue with those who think otherwise.

Until now, I have avoided being too vocal about my own stance on this whole issue. I am an introvert by nature, and I dislike rocking the boat. I don’t want to hurt anyone’s feelings or make people mad at me. So when it comes to controversial topics, my usual approach is to be as quiet as possible.

As an advocate for my child, though, I sometimes have to go well beyond my comfort zone. So I will step out of my zone for a moment to make the following statement: I do not believe that vaccines are responsible for the autism epidemic.

I am not trying to say that it is not possible for vaccines to cause damage to a child. I’m not suggesting it would never happen, and I would never presume to tell another parent what did and did not cause their child’s autism. I’m also not saying that vaccines don’t come with their risks.

I am simply saying that I don’t think the dramatic rise in autism over the last 20 years can be blamed on vaccines.

Proponents of both arguments could produce pages and pages of research in support of their views. To me, the salient information can be summed up as follows:

* The research that sparked this whole debate, done by one Andrew Wakefield of the United Kingdom, has been widely discredited for a number of reasons – two of which are that the research was inherently flawed and that there were issues relating to conflict of interest.

* After Wakefield’s paper was published, areas in several countries reported a dramatic drop in the use of the MMR vaccine. All of these places saw a sharp rise in measles and mumps, but there was no change to the rate at which kids were being diagnosed with autism.

* When the rate of vaccinations in these areas started to increase again, there was no change to the rate at which kids were being diagnosed with autism.

* The leaps made in the sequencing of the human genome have opened all kinds of doors to genetics research, and there an increasing body of evidence linking autism to genetics.

Having said all of this, I want to state the following:

* I believe (and bear with me here – I am not a scientist) that in some children, vaccines can interact with genetics or with other environmental factors to result in an outcome of autism.

* Whether or not you believe in the vaccine-autism link, vaccines are a form of medical treatment, and it’s up to everyone to do their homework, just as they would for anything else, and then decide whether vaccines are the right choice for their kids.

I am not trying to change anyone’s mind with this post. I am simply stating my views that are naturally tinted with my own experience (namely, that my child came out of the womb with autism), and I fully respect that other people have had different experiences that lead to them having different opinions.

(Photo credit: Steven de Polo. This picture has a creative commons attribution license.)


Why Autism?

“Why do you think he has autism?”

This question is posed to me quite a lot by friends and strangers alike, people who for the most part intend no malice, but are genuinely curious about the origins of George’s autism.

That they are asking the question at all is something that I see as a positive sign. It tells me that increasingly, people are wanting to be educated about autism instead of blindly believing every tidbit of information – right or wrong – that is thrown their way.

Over the years, I have done research on a variety of theories.

Was it vaccines? No, I don’t believe it was. Deep down, I knew from the time George was a tiny baby that he was not on the trajectory of “typical” development. I don’t buy into the dietary theory either, for the same reason. George was exclusively breast-fed for four months, and by then I was seeing some little signs that something was not quite right.

No, whatever happened within George’s brain to result in his autism, it was a done deal by the time he came out of the womb.

Even with that knowledge, the title of Primary Cause is wide open. I have read a couple of recent studies suggesting that environmental factors in utero could have more of an effect than previously believed. As if moms of children with autism didn’t have enough guilt on their shoulders already. But that is neither here nor there.

When I was expecting George, I did everything that was considered by pregnancy gurus to be “right”. I ate lots of leafy greens and took my prenatal vitamins every day. I ate lean protein and avoided foods with a high fat content. Accustomed to eggs “over easy”, I ensured that my eggs were fully cooked, and I did not touch deli meat or anything else that could be a potential listeria risk. I did not touch a drop of alcohol, I stayed away from places where I might be exposed to second-hand smoke, and my body pretty much bullied me (through the magic of the laughably known “morning sickness”) into kicking caffeine to the kerb. I went to all of my OB/GYN appointments and followed the advice of my doctor. I did not take so much as a headache pill through my entire pregnancy. The only tablets going into my mouth were vitamins and Tums.

I don’t think I could have created a better environment for my baby if you had paid me a million bucks. Of course, there is the possibility that fifty years from now, someone will prove that some obscure enzyme in, say, oranges, has been linked to autism. But I think it is safe to say that the prenatal environment is an unlikely candidate for the cause of George’s autism.

Leaving aside other environmental factors like air pollution, there are two other possibilities: genetics, or the circumstances surrounding the birth itself. Or maybe a combination of the two.

When I was a child, I was developmentally delayed. I didn’t talk until I was five, and I had some motor skill delays. My body was physically capable of doing anything my peers could do, but the communication between my brain and my muscles was out of synch. It was clear – especially in the early years – that I had some kind of learning disability, although I was never formally diagnosed with anything. As I navigated my way through childhood and adolescence, I was able to compensate for my learning difficulties by simply thinking in a different way and leveraging areas that I was strong in. But as my academic performance got better and better, my social awkwardness and anxiety among people became more and more apparent.

To this day, I suffer from social anxiety, although in general, I have found ways to adapt and mask it so that people don’t really notice. I’m not so much a stickler for routine, but once plans are made I get very uncomfortable – almost panicky and kind of, well, spectrummy – if they are changed. Although I am now fully verbal – sometimes, downright talkative – there are times, usually when I’m stressed – when I lose the ability to communicate through speech. It’s as if the words get lost somewhere between my brain and my mouth.

Am I on the autism spectrum? I don’t know. I have never been for screening, and frankly, I don’t really see the point. But if I were to learn that I have Aspergers, I would not a bit surprised. When I look at the way George has evolved through his early childhood, and the way he is at this point in his life, I do see a lot of parallels with my own early years. So, genetics? It’s a strong possibility.

The other possibility is that something happened to George’s brain while he was being born. For the most part, my labour was pretty standard. Everything happened more or less when the Medicals said it would. When I was in the thick of contractions, I heard someone use the word “textbook”. When the time came to push, though, the going suddenly got a lot tougher. Even though the baby was perfectly positioned for birth, no matter how hard I pushed, nothing budged. The Medicals kept telling me to push harder, push harder, but I just couldn’t do it. After what felt like an eternity but was probably only a couple of minutes, the Medicals gave me an episiotomy (if you don’t know what that is, look it up, because I ain’t describing it here). Once that was done, I gave one more almighty push, and an eternal second later, I was rewarded by the sound of a baby crying.

Here’s the thing, though. While I was pushing to no avail, the baby’s heartbeat – usually in a range of 130-150 beats per minute – dipped to below 40 beats per minute. Only for a couple of seconds, mind. Like a momentary blip in the radar. But could those couple of seconds have been enough to alter the wiring in my baby’s brain?

In the end, I suppose it doesn’t really matter. George has autism, and knowing the cause with crystal clarity would not change that.

No matter what the cause, George has autism, and I love every inch of him for who he is.

(Photo credit:


Spectrum Musings

Sometimes I wonder if George got his autism from me.

I don’t say that with any sense of guilt. If he did get it from me, I don’t feel bad about it. After all, I can hardly be held responsible for my genetic composition. It’s not as if I had any control over what DNA I landed up with.

I wonder about this question, though, from a purely scientific, curious point of view. Because although I’ve never been screened for it, it would not surprise me one bit if I were to learn that I am on the autism spectrum.

When I was a baby, I cried. I know, that sounds like a ridiculous statement. Of course I cried. That’s what babies do. In my case, however, I couldn’t be soothed. My poor Mom would change me, feed me, rock me, try to get me to sleep. No matter what she did, I cried relentlessly, for hours at a time, for no apparent medical reason. Mom surmised that maybe I was reacting to a feeling of  rejection after my birth mother had given me up for adoption.

Adoptions in those days were closed, and no information was exchanged between the birth mother and the adoptive parents. My Mom knew nothing about where I had come from. She told me in later years that she just assumed there was some factor she did not know about that was causing all this angst in me.

When I was a very young child, it became apparent that I had notable developmental delays. I was a very late talker, and did not show signs of functional speech until the age of five. It took me a lot longer than my peers to learn how to read (although it must be said, once I did learn, it was like a floodgate had opened, and I read everything I could get my hands on).

At the same time, I had issues with motor skills. I was uncoordinated, and stubbed my toes a lot. I did not have the strength to hold a pen, and I didn’t even know, until some species of therapist did some testing on me, that I was left-handed. My hand-eye coordinatin was nowhere and I had to be taught it while other kids seemed to just pick up on it naturally.

There are certain sensory things that I find hard to handle. Flickering lights (although, to be fair, that would probably drive most people batty). The textures of certain foods. Clothing labels have the ability to make me want to chew off my own arm in frustration. When Gerard has the TV on too loud, I actually want to scream. Hearing too many sounds from too many different sources (TV, dishwasher, telephone, whatever) invokes a feeling of intense anxiety.

When I’m stressed I rock back and forth. I find it calming, I find that it can sometimes stop the stressful feeling from escalating.

One of the most telling factors in my musings, however, is my social awkwardness. I have had this problem throughout my life. As I get more comfortable with specific people, my social ineptness becomes less apparent, and I work hard to hide overcome it in my day-to-day life.

Social gatherings can be excruciating for me. High school was just torture – I so badly wanted to fit in, but I couldn’t be social enough and my attempts came across as awkward and embarrassing. The only person at school who I felt completely comfortable with was my friend Jenny, who remains my best friend to this day.

There are certain social situations that make me feel even more uncomfortable: conflict, meeting new people, situations where I unexpectedly have to make small talk, anything to do with telephones.

Gerard has remarked several times that I seem to have a special connection with George. When he is having a meltdown, I seem to have the ability to just know what to do, to know what he needs. It can take a long time to calm him down, but in most cases, I can just know – without explaining how I know – how he needs to be spoken to, held, comforted, soothed.

And I wonder why this is.

Is it a normal motherly instinct?

Or do I, in some ways, inhabit the same world George does?

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