“To review the concept of identity means to sketch its history… ‘Identity’ and ‘identity crisis’ have in popular and scientific usage become terms which alternatively circumscribe something so large and so seemingly self-evident that to deman a definition would almost seem petty… The quotation marks are as important as the term they bracket: everybody has heard of ‘identity crisis’ and it arouses a mixture of curiosity, mirth, and discomfort which yet promises, by the very play on the word ‘crisis’, not to be something quite as fatal as it sounds… It may be a good thing that the word ‘crisis’ no longer connotes impending catastrophe, which at one time seemed to be an obstacle to the understanding of the term.  It is now being accepted as designating a necessary turning point, a crucial moment, when development must move one way or another, marshaling resources of growth, recovery and further differentiation.  This proves applicable to many situations: a crisis in individual development or in the emergence of a new elite, in the therapy of an individual or in the tensions of rapid historical change.” – Erik Erikson (1968) Prologue to ‘Identity: Youth and Crisis’

Autism is a disorder of the modern world.  First identified in 1912 by Eugene Bleuler, father of schizophrenia, it has undergone a stunning transformation in it’s almost 100 years of existence.  The autism identity of yesterday bears no resemblance to the autism identity we know today.  And our understanding and response to it has paradigmatically changed as each decade of its existence passes by.

It has been said that the increasing rates of autism have pushed us into a crisis situation, that autism is an epidemic sweeping the world.  However, I propose that it is the Autism Identity which is facing the crisis; as our thinking about autism has become so fragmented – dividing support, resources, funding and research in a culture war between advocates.

On the one hand, there are those who believe that autism is not a mental health issue, rather, it is a biomedical/environmental one, and should be treated accordingly until it is cured.  The culprits for the biomedical condition known as autism are vaccinations, processed foods, and vitamin deficiencies.

On the other hand, there are those who believe that autism is a condition that manifests in the brain and is the result of genetic influences on the brain’s development.  Although this school still offers a biomedical explanation of autism, it is markedly different in its approach to understanding autism.

On yet another hand (or let’s say the foot), there are those who think we are wasting our time and resources looking for a cure that doesn’t exist.  That people with autism fundamentally aren’t different from other humans in their basic needs and deserve equality of opportunity.

On the toe of that foot is yet another perspective that places the autistic mind and condition as being one of higher cognitive capacity than the non-autistic mind… perhaps providing a clue to the next phase of human evolution.

The origins, causes, and implications of autism have been debated and disputed since its identification in the early twentieth century.  With diagnosis rates increasing at an exponential level in the past ten years, many say that we are facing an Autism Crisis.  But in many ways, this crisis of autism has been exacerbated by the Autism Identity Crisis, which (as all identity crises do) is preventing us from advancing our own development and understanding of autism… what it is, where it comes from, why it’s here and what it means.

This timeline/essay/blog takes a page from Erikson’s Theory of Identity Crisis and “sketches the history of it” with the hope that the Autism Identity Crisis is “accepted as designating a necessary turning point, a crucial moment, when development must move one way or another, marshalling resources of growth, recovery and further differentiation.”

1943 – Leo Kanner wrote a paper called, Autistic Disturbance of Affective Contact, describing the autistic condition and creating the basis of the current psychological characterizations of Autism.

1944 -  Hans Asperger wrote of Autistic Psychopathy in Childhood, however the subjects of his study had language development, whereas in Kanner’s Autism study, the children observed did not.

1950 – a landmark book on child psychology was published by Erik Erikson called Childhood and Society. Erikson was a student of Freud (I think he was banging Freud’s daughter) except he believed that sociality rather than sexuality, was the key to childhood development. In chapter 5 of Childhood and Society, Erikson writes of “Jean” a girl with “infantile schizophrenia” calling the condition a state of Early Ego Failure possibly caused by lack “maternal rejection” (though he indicates that this is debatable).  When you read about Jean you can’t help but to notice that she is autistic… definitely…

1965 – Bernard Rimland, father of an autistic child and rejector of the Freudian view of autism, wrote Infantile Autism.  Rimland was certain that autism had biological foundations, not psychological ones and dedicated his career to finding those biological foundations.  Rimland’s case was so compelling that Leo Kanner himself, a proponent of the psychological basis of autism, wrote the forward to Rimland’s book, and conceded that autism was, most likely, a neurological condition rather than one induced by “refrigerator mothers”.

1967 – another Freudian, Bruno Bettelheim published The Empty Fortress: Infantile Autism and the Birth of the Self. Bettelheim’s book, which upheld the status quo version of autism, continued to fuel the scientific, psycho-social view of autism as being caused by maternal rejection.

1967  – was also the year that Rimland established the Autism Research Institute and starting compiling a database of over 40,000 case studies of autism from 60 different countries.  He also started advocating for more biomedical research and treatments.

1985 – the article Does the autistic child have a ‘theory of mind’ by Simon Baron-Cohen, Alan Leslie and Uta Frith was published.  Keeping in with the psychological school of thought, but shifting away from a Freudian school and into Piaget’s realm.  It was the Theory of Mind (ToM) approach which first opened the door to the possibility of autism as being tied to the cognitive capacity of people to empathize with the other, or understand that the other had a unique perspective of their own.

1986 – a voice emerged for the autistic people like never before.  Dr. Temple Grandin, who was condemned with the label of autism in the 1950s, published Emergence: Labeled Autistic, a first hand account of her life and experiences growing up.  It was an inspirational story of a brilliant woman who managed to overcome her label and find a space for herself in society.

1988 – Autism infected the hearts and minds of everyone through the production of the movie Rain Man.  Dustin Hoffman’s portrayal of autistic savant Kim Peek won him the academy award. And almost overnight, the majority of North Americans were exposed to autism.  It is worth noting that Bernard Rimland played a key consulting role on the movie.

Then everything changed in the Nineties.

In the 1990’s Rimland started cautioning about the increase in autism rates across America and sounding alarm bells about the correlations between these rates, and mercury levels in vaccinations.  Facing many barriers and criticisms of his research, Rimland took his fight to parents, and appealed to them for support and resources.  Through this advocacy, the group Defeat Autism Now emerged.

With the promises of treatments and cures for autism, the DAN network grew with the increasing diagnosis rates.  Parents felt as though they had been abandoned by the institutional health care system, and institutional health care system was unable to adapt to the numbers of autistic children they were seeing coming through their offices.

Behavioural therapy was proving to be most effective in dealing with autism.  Based on the principles of conditioning and controlling the environment, preschools and classrooms were able to meagerly integrate the increasing numbers of autistic children into their curriculum’s.  Behavioural therapy was believed to be so effective, that parents started advocating for intensive (and expensive) behavioural programs, to be covered by the health care system.

This was a difficult situation for the health care system to deal with.  As behavioural therapy is not considered medical intervention, rather a psychological intervention… the health care system did not quite know how to handle it.

Alongside the fight for behavioural intervention and therapy, the DAN group was conducting research on the autism-vaccine connection.  Here, the focus of therapy was not to integrate autism into the community, it was to eliminate it all together.  Autism, as it was presented by DAN and similar parent advocacy and research organizations in America, was a debilitating disease caused by vaccination injury.

People began cashing in on the notion that autism could be treated and cured through vitamins and diet and special oxygen chambers, as parents, desperate to cure their children, started handing over their money and their lives to it.

In the late 1990’s and early millennium, the “first voice” perspective, as first demonstrated in the mid-80’s by Temple Grandin, began to emerge.  More people who were living with autism and who had voices to talk about their own fates and futures were writing books, and talking about their perspective, and asking for acceptance of their condition… The notion of an autistic culture was being born as early as anti-vaccination movement, but it was up against a louder, stronger culture of frustrated parents and beautiful celebrities, whose autistic children had shattered their dreams of the perfect white picket family.

Meanwhile, in the UK, ToM researcher, and Autism Research Centre Director Simon Baron-Cohen was expanding his theories on autism and began making a link between autism and the male-brain.  In 2003 he published The Essential Difference: Men, Women and the Extreme Male Brain, a book which proposed that autism was an extreme manifestation of a highly systemizing (male) brain.  The ToM school of thought considers the neurological foundations of autism, how the autistic brain works in processing the world, but does little to offer a cause or cure to it.  Rather, it is presented as a “type” of brain which processes the world in this extremely male way.

As money poured into the pockets of researchers trying to find the cause of and cure for autism, another key organization emerged.  The Autistic Self-Advocacy Network was very recently founded by Ari Ne’eman, a young man on the spectrum, which overtly called the idea of “curing autism” into question.

The ASAN was “created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the autism spectrum.”  Much in the same way Mr. Rimland created the Autism Research Institute back in 1967, to combat the public perception of autism as a “refrigerator mother’s syndrome”, Mr. Ne’eman is possibly taking the formation of Autism Identity to the next level.

Today there are many theories and studies about autism, and all seems to be dichotomized around a mind vs. body debate.  Herein lies the crux of the Autism Identity Crisis.

Autism is either a disease induced by environmental factors, or it is embedded in our genetic code.  Autism is either a physical condition, or a cognitive one…. The mind-body split of our understanding of autism has created an important and damaging split of expertise.

It is easily understood why the attitudes of parents of autistic children not willing to accept that autism as genetic component, corresponds to a desire to rid their child of the autism curse.  There is no doubt that for these families, autism is a curse which prevents them from participating as “normal” families do.  Autism is a curse which means that their children will not grow up with the same cultural values.  Autism is a curse of difference and abnormality.  If you hold the view that autism is this curse, it is hard to believe that it was your own DNA which caused it.  If autism is genetic, and autism is a curse, then you have cursed your children with your faulty genes.

It is also easily understood why so much research money is poured into the promise of a cure for autism.  Autism presents the system… all of the systems… with problems related to outdated and ineffective policy and operation.

These two things feed into one another, and they spiral and swirl around in a reflexive feedback loop while they both fail miserably at addressing the educational and social needs of autistic people.

There is an autism crisis, but it has nothing to do with the increasing numbers of diagnosis… it has to do with our response to it, and the development of our understanding of it.  It has to do with our inability to honestly and objectively get to the real answer about autism, partially because it is so complex, but mainly because we are afraid of what it is ultimately going to tell us about ourselves and our society.

I will close with part of the excerpt I began with, but this time, adapted (bolded text):

“To review the concept of autism means to sketch its history… ‘Autism‘ and ‘autism crisis’ have in popular and scientific usage become terms which alternatively circumscribe something so complex and so seemingly self-evident that to demand a classification would almost seem petty… The quotation marks are as important as the term they bracket: everybody has heard of the ‘autism crisis’ and it arouses a mixture of curiousity, mirth, and discomfort which yet promises, by the very play on the word ‘crisis’, not to be something quite as fatal as it sounds… I hope we will see the day that the word ‘autism‘ no longer connotes impending catastrophe, which at one time seemed to be an obstacle to the understanding of the term.  And that the ‘autism crisis’ is accepted as designating a necessary turning point, a crucial moment, when our understanding of it must move one way or another, marshalling resources of growth, recovery and further differentiation.  This proves applicable to many situations: a crisis in individual development or in the emergence of a new elite, in the therapy of an individual or in the tensions of rapid historical change.”

While searching online for a copy of the BAPQ survey (Broad Autistic Phenotype Quotient), neurodiversity.com provided me with a decent alternative. This is a link to an Aspie Quiz “The goal of this test is to give a reliable indication of autism spectrum traits in adults.”

Over the past few months, I’ve become hyper-reflexive with aspects of my behaviour and sources of my anxiety. I’ve also been contemplating the reasons I am inclined towards to the neurodiversity movement. Why am I a mother who wants to celebrate autism when there are parents out there who would rather their kids had cancer than autism.

I was beginning to wonder where on the Autism Spectrum I sit.

So I took the test. It was over 100 questions related to sensory, social, cognitive and behavioural characteristics each measured on a three-point scale.

My Aspie Score was 135 out of 200
My neurotypical (non-autistic score) 83 out of 200
I am likely an Aspie…

The analysis of the scores looked sound. It placed you on a matrix of multiple aspie dimensions so that you could see the shape of your Aspergers’ and shows the indicators which make up that scale.

It looks like they are trying to develop a reliable survey instrument to measure Aspergers in the general adult population. Which could ultimately turn into evidence that the autism epidemic is not epidemic at all… it’s always been there, we are just now starting to experience the extreme expressions of it.

Interestingly, Dave also took the Aspie test and scored identically with me on the neurotypical scale and only 3 points higher on the Aspie scale, but the shape of his Asperger’s was quite different than mine. I have learned the social rules better, and had many opportunities to practice them… but as Susan Bryson pointed out at the Feb 18 Cafe Scientifique, in regards to gender differences, women on the specturm often do… which makes it harder to detect in them.

I’m unsure what I’m going to do with this information… that is, I don’t know if I need to go and get the “official” label, but I am going to think about it some more. I have always known that I am not neurotypical, but am I expressing Asperger’s? It would be an interesting turn of events if I decided to embrace the label. I don’t think I’d feel comfortable using the label with my only evaluation being an online quiz… regardless of the fact that it is perhaps the best instrument available to date.

Susan told me she thinks she has (or can get) a copy of the BAPQ which is the one I’ve been wanting to look at for potential research I wish to conduct independently. Perhaps I will talk to her about this sooner rather than later.

The Artists for Autism fundraising auction finally happened on Friday and anybody who isn’t too overtly self-critical of themselves could only describe it as a success.   Charlene, of course, immediately began analyzing the weaknesses of the event.  I won’t go into them here – I’d prefer to concentrate on the successes – but suffice to say that although at first she viewed those weaknesses through a lens of disappointment, this perspective was quickly modified into a more useful one.  Identifying weaknesses as just a way of identifying potential strengths and I think we can all be certain that next year’s event – 1st annual, remember – will be even more fun and more successful than this year’s was.  Enough about weaknesses, though.  Some money was raised, as was some awareness.  People learned about autism, and the summer camp we all came there to support, they heard some fine music, saw some fine art, and met some fine people.  Personally, I had a blast.  I think everybody did.

The kudos -

First, and most obviously, to Charlene.  She is embarrassed by (as she has put it) “the gushing”, so I promise only to subject her to it this one more time.  This woman is an abnormally capable and energetic person, and the way she pulled this event out of the air in just a few short months was remarkable.  One of her greatest strengths, of course, is her genuine enthusiasm for people – and this enthusiasm is almost invariably returned.  So the smartest thing she did – like the smartest thing all good leaders do – was to put together a team of likewise astounding and energetic people.

Steve, Stacey, Tara, Ulo, Jocelyn….I’m sure I’m forgetting people, but extra special kudos to those five anyway.  The wonderful counselors from the summer camp, the musicians and the artists deserve special mention, too – but there are far too many to call by name.  A few of the artists – Rob Harris, Andrew Hunt, and Steve Hayes – came and actually spoke to the crowd about their pieces, about autism, and why they were taking part in the event.  They were a joy to listen to, and I am so grateful to have had the chance to do so.  And Olga Milosevich, whose name I hope I have spelled properly, from CBC radio was on hand to host.  She is a friendly, smart and charming lady who brings all those qualities to bear in her hosting.  There are scores of others who had hands in the evening’s production, but the orchestra would play me off the stage before I had the chance to name them all.  Just three more, I promise, with apologies to everyone I leave out.  Dr. Blye Frank, who hosted Snakes, Snails and Puppy Dog Tails: Autism and Our Boys’ Health; Ellen Scordato, who went above and beyond in bringing the Art auction book into existence; and Gerry Weston, my very wonderful mother-in-law, who did everything Charlene needed her to do (and so much more) and who ended up coming out of the evening with an even better understanding of our family.

Snakes, Snails and Puppy Dog Tails preceded the auction part of the evening.  It was an informal educational event in the form of a discussion panel with five experts on autism.  Dr. Sarah Shea and Dr. Susan Bryson were on hand to talk about the more clinical side of autism, and its medical, psychological and social associations with boys.  These are two sharp cookies, and I (like the rest of the audience) hung on every word they had to say.  This was the first time I had the pleasure of meeting Dr. Bryson, who has conducted a good deal of research on siblings with autism, which is an obvious area of interest of mine.  Later in the evening I was able to indulge in a more in-depth conversation with her, and look forward to hearing more from her in the future.  Dr. Sarah Shea, meanwhile, has been a powerful and positive force in my family since the early days of Gabe’s diagnosis.  Back then, I asked her the (to me) straightforward question: “Does he have autism?”, but her reply was guarded.  “He exhibits characteristics consistent with autism spectrum disorder.” she told me.  At the time, I found that answer frustrating and avoidant.  But soon I understood.  Autism is not a disease like Down’s Syndrome or leukemia.  You can’t simply do a blood test and say, about a child, “yes, he is autistic.”  Autism is a nuanced thing, if it not always a subtle thing.  It is not a disease, but a collection of possible characteristics, some present, some not, and all in varying degree.  Dr. Shea was actually telling me all of that with her guarded reply.  And ever since then, our family has relied on her more frequently and more thoroughly than on any other health care professional involved with the children, and she has never failed to come through for us.  She has been a fountain of information for us, and always frank and professional and (most important to me, maybe) good-humoured.   It is always a pleasure to hear her talk, and the panel was no exception.  After the good doctors spoke, Vicki Harvey from Autism Society Nova Scotia took the microphone.  Like Charlene and I, Vicki is a parent of a child with autism.  And, like Charlene, she is an energetic and enthusiastic autism advocate.  She talked about the importance of bringing more male caregivers into the field, a sentiment I agree with completely.  Speaking for my own family, having a male primary care giver works out pretty well I think.  Even putting aside my own ego…our current (and, I hope, long-term) respite care worker is male.  He worked with Izaak at the summer camp this year and, with all due respect to the female respite workers we’ve had (and we’ve had some great ones), he actually has the strength and the stamina to keep up with our terminally active Izaak.   After Vicki spoke came Charlene and I.  We provided a more personal perspective, talking about life with autism.  What we usually write about here.

Charlene, in an attempt to deflect some of the embarassment of congratulations heaped upon her through the course of the day, mostly gushed about my role at home and the hard-fought but mostly successful battle to find some symbiosis in a complex relationship while raising two complex children.  She made me feel really good, and then introduced me, telling the crowd I was extremely nervous and so please don’t be too hard on me.

And boy, was I nervous, but not so nervous that it made the audience shift uncomfortably in their own seats.  I don’t speak well to groups of people.  That is to say, I am exceedingly nervous when called upon to speak to a crowd (it happens rarely), and would generally rather crawl deeply under my bed than do so.  Believe me when I say I spend a good deal more time under my bed than I do adressing groups of people.  Still, the talk – a mashed up version of an old blog – went okay.  It was definitely the most personal talk of the evening, and I heard from several people afterwards how touched they were and how they wished this relative or that friend had been able to hear it.  Basically, I said what a social retard I was and aren’t my kids awesome and didn’t I marry smart.  Everyone seemed to agree.

See you at the 2nd Annual!

You would think that by now, there would be a best estimate of the actual autism rates in Canada, broken down by gender, age, race, socio-economic status and geographic location (federally, provincially and municipally). There is a serious flaw in policy formation around autism response if that data set is not currently in existence.

Statistics Canada has the answer I require, as the Census would be the only such instrument which could collect that data.

According to the 2006 Canadian Census, the population of Canadians with developmental disabilities is 190,310. That number converts into the 1 in 166 statistic that Autism Society Canada uses, and is the one seen pretty much every time autism appears in print.[1] In the 2001, this category of “developmental disabilities” included all of the PDD’s that fall under the Autism Spectrum, but also down’s syndrome and developmental problems from lack of oxygen at birth. Therefore we don’t know exactly how accurate that 1 in 166 statistic is.

It’s a flawed statistic anyway because it doesn’t even include children under the age of 5. So you would have to remove those from Canada’s 31.6 million population count to get the actual statistic. If we did this, the ratio would probably go a little higher.

The statistic might go higher still, if we consider the number of adults with autism who were misdiagnosed as children and entered the institution system. Those labelled “mentally retarded” would fall under the “intellectual disability” category of the Census.

The big question that needs to be answered is: how much does the number of people with “developmental disabilities” drop when those who don’t have ASD (down’s and lack of oxygen) are removed? How much does it affect the reliability of the 1 in 166 statistic, given the above discussed effects that would perhaps raise incidence?

Given all of these caveats, I want to deconstruct the numbers for you, assuming that the whole of the “developmental disabilities” category is the best estimate we have of incidence of autism in Canada.

The best estimate we have of autism rates in Canadian children is, 1 in 104; as he population of Canadian children is 5,579,839[2] and the population of Canadian children with developmental disabilities is 53,740.[3] So 53,740 out of every 5,579,839 Canadian children (or 1 in 104) have developmental disabilities.

While that might be startling, consider this… only 28%[4] of the population with developmental disabilities are between the ages of 4 and 14. A full 72% of those with developmental disabilities are over the age of 15. Yet, look at where all the public programming money is being sunk, on early childhood initiatives towards identification. While early identification and intervention is extremely important to the outcomes of children with ASD, the continuation of services is perhaps even more necessary for the success of individuals with ASD in our society.

It wouldn’t be so bad if governments didn’t tout their contributions to the ASD community as being sufficient in their cost/benefit analyses when allocating resource money. It’s almost as though the policy that is being formed around ASD is actually uninformed by the actual data!

Just take a look at the Nova Scotia numbers…

• The population of Nova Scotia is 913,460

• The population of Nova Scotians with autism and pervasive developmental disorders is 7420

• The population of Nova Scotian children is 146,435

• The population of Nova Scotian children with autism and pervasive developmental disorders is 1790

Therefore autism and pervasive developmental disorders affects

• 1 in 123 Nova Scotians (7420/913460=1/123)

• 1 in 82 Nova Scotian children (1790/146435=1/82)

• 24% of those with ASD in Nova Scotia are between the ages of 4 and 14 (7420/1790=.24)

• 76% of those with ASD in Nova Scotia are aged 15 or over

Yet whenever anyone queries the government about the potential of more resources and funding, they are referred to Dr. John Hamm’s $2,000,000 contribution to the early identification unit at the IWK, a program that, when it was initialized serviced 10 families who had their names drawn out of a hat.

A program that, in its initialization, sucked the non-health related resources dry of their best people. The starting of the EIBI program corresponded with Izaak’s last year involved with the early intervention treatment services. Within one month he lost his early interventionist (non-government) one of his daycare personnel (non-government), his occupational therapist, his behavioural psychologist, and his speech language pathologist three months before his school transition meetings were to start occurring. There were people coming to replace them, but as Izaak would only be in that system for another 6 months, they could never replace the bank of knowledge about Izaak and his individual needs that left when those professionals left.

It is my gut feeling given all of these caveats, the best estimate that we have is based on the 2006 Census data, unless the Census asked and recorded information about the specific disabilities, rather than just the aggregated “developmental disabilities” variable.

And even if the ratio goes up or down by one or two numbers, it is not going to change the overall patterns observed here.

It is time for the policy makers in this country to start thinking about long-term planning, and to incorporate the potential of many with ASD to actually benefit society and the labourforce into their cost/benefit analyses of resource allocation. Many people with ASD do not have to grow up and become a burden to the system. In fact, many of those with ASD might have a lot to offer if they are given the proper education and therapeutic tools and resources that they need to function as adults independently[5] in our Canadian Society.

It will not be an easy task, and will require government departments at all levels to work together. Health, Recreation, Human Resources, Community Services, Education – they all need to start working together to form a proper response to the autism problem. Policy needs to be designed to reflect the reality of the situation which requires the policy in the first place. It could almost be read as being fundamentally discriminatory if it does not, or is simply based on superficial details and reflects the ignorance and inefficiency of the policy-makers in this country.

---

[1] The population of Canada is 31,612,895, therefore, autism and pervasive developmental disorders affects 1 in 166 Canadians (190310/31612895=1/166.11)

[2] Between the ages of 0 and 14

[3] Between the ages of 5 and 14

[4] (190310/53740=.028)

[5] Or at least with minimal supervision

Last week friends and I were gathered together sharing beers and laughs when the topic of autism made it’s way into the conversation (as it often does).  I was almost shocked when a dear friend of mine announced that it was certainly vaccinations that caused autism.  Without a shadow of a doubt he “knew” that it was the case as he listed off the anecdotal evidence used over and over again in the “literature” on the topic, therefore was a little confused when I blurted out, “Oh don’t tell me you’ve fallen for the propaganda?”

He then proceeded to recite some “facts” he had heard via Jenny McCarthy and Jim Carrey on the topic.  Frig, I hate it when something gets co-opted in a misguided way… based on an emotional reaction rather than a rational one.

It concerns me that the general population is absorbing these “facts” and accepting them as true, thereby reducing the causes of autism into a single, simple, FDA-induced posioning.  I mean, come on… granted mercury is nasty stuff to have injected directly into your blood-stream, but does anybody expect me to buy that a microscopic amount of it is capable of inducing the extreme types of genetic, neurological and gastro-intestinal differences observed in people who carry the official label of autism… I mean frig, higher levels of mercury were detected in the bloodstreams of Nova Scotia’s River Otters.

I’m not saying that the vaccination theory is not without it’s finer points.  There are interesting historical correlations between autism and the use of thimerosol in the notorious MMR vaccine.  And there is a definite correlation between age of onset and the timing of childhood vaccinations… but there are many studies which have made similar types of temporal correlations between autism and the cable television penetration, or between autism and processed foods… and there have been countless empirical studies which have time and time again shown that the “scientific” relationship between autism and vaccinations is inconclusive.  So on the vaccintation theory, I have to put on my positivist hat and lean with the data on this.  T-D=BS after all (that is Theory-Data=BS).

I refuse to believe that the prevalence of autism is dependent on a single variable… this theory implies that if these kids never had their 18-month dose of a particular vaccine, they never would have “caught” autism. And not only is their child’s perspective an accident of poor quality-control… it is potentially “curable”.

How do you cure something like autism?

We forget that homosexuality was once classified as a psychological disorder in the DSM.  And that at one point in history, the academic and scientific communities believed that homosexuality had a single cause… the devil… and it was treatable and even curable.

That is not to say that there is much work to be done to bridge the gap that exists between children with autism and their “neuro-typical” parents… but perhaps we are trying too hard to force them to understand us, when there is much we have to learn from them.

It concerns me that the majority of publicity autism has been getting lately has been towards a perspective that promotes the elimination of the characteristics of the autism spectrum that are odd to us… those that we don’t understand… those that are not socially-acceptable and those that are emotionally trying for parents to deal with on an individual basis.

We are the authorities on our kids.  It is our jobs… our social, and moral obligation to ensure that our children live to their fullest potential… regardless of their perceived intellectual and social capacities.  There has been case after case of autistic adults, who otherwise appeared to be retarded in the repetitive behaviours, odd physical movements and general interaction with people… “coming out” so to speak, about their potential and perspective.  So why bother shaking our fists at God for placing this burden upon the lives that we thought we were going to have when we have a lot of work to do in making sure that our kids do live up to their fullest potential.

It disappoints me that Jim Carrey is a subscriber of the vaccination theory,   For a little while, I actually believed that Jim Carrey was an “autism whisperer“… in that Carey is either on the Spectrum himself, or just kooky enough to engage kids with autism.  But if that was the case, I mean if he really was an autism whisperer, then you’d think he’d have been listening to what was being whispered back.

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.

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…

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.

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…

    

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…