5/24 Today is my birthday; I’m 57 years old.
I mention this not to solicit “Happy Birthday” e-mails – but to illustrate that there is not a single day that goes by in our life where lead poisoning and its impacts are not omnipresent and a deciding factor in everything we do… (birthdays, anniversaries, holidays – nothing is exempt.)
The first half of the day was spent trying to get our kids into the car—breaking up fights, negotiating with and bribing and pleading and cajoling and assisting our freakin’ crazy boys into leaving the house so we could go for a walk in the forest as a family…(we never made it!)
10 years ago – before my children were poisoned – I could not even have begun to imagine how lead poisoning might enter our lives and change everything forever. Everything. Our ability to work changed; the way we interact with our children changed; our daily routines for how we do everything from waking up to getting dressed to eating meals to going to bed radically changed.
The considerations we have to take into account when simply thinking of going out for a family outing changed – and became more complex than I could possibly imagine they would/could ever be!
It is for this reason my wife has dedicated her life to this cause. She eats, sleeps and breaths it, because she has to deal with this every moment of every day, because of our children.
Of our four sons, three are quite a bit more than “a handful”: they are routinely, randomly driven to apoplexy by the mere touch of clothing, the smell of food (for instance, in a cafeteria or restaurant) that they don’t like, music or voices or other background sounds that are just a trifle loud, an assemblage of more than two strangers, being “interrupted”—or asked to calm down or merely speak in an “inside voice” when required; they have fits when confronted with an unexpected change of plans, unfulfilled expectation, thwarted intention—or merely unanticipated conditions; they have seemingly endless arbitrary and inflexible aversions, peccadilloes, ritual requirements, fetishes, rules of engagement, mandatory/compulsive order of operations, irrational fears, overreactions, irresistible impulses, etc. And whatever you think you have learned about what worked yesterday to possible lessen the likelihood of a “situation” (as in, “requesting assistance—we have a ‘situation’ here!”) likely won’t apply today! Just think of whatever mischief, pandemonium and grief ordinary kids can generate and multiply by TEN!
Neighbors and strangers (even some extended FAMILY members) have “helpfully suggested” -upon witnessing the degree of havoc one or another of our kids daily wreak that, “you know, he should really be INSTITUTIONALIZED!” [Yeah, thanks for the clever insight—we’ll look right into that!]
A good friend (Angela) recently brought us some signs that we have prominently posted on our property that read, “This is what Autism looks like. Any Questions Ask My Mom? ” and, “”Hi, I’m Autisitc and need you to be: 1) Patient and 2) Kind to My Parents“. Prior to putting these signs up in our yard Child Protective Services (CPS) had been called twice (by some “good intentioned” neighbor) with a report of potential child abuse because our kids were repeatedly heard screaming (at the top of their lungs as though they were literally being tortured). [CPS of course instantly dismissed this concern and all other allegations upon meeting with us and with our children and learning more about our boys and their issues.]
Ironically, each of the days (one in May of 2011 and another in May of 2014) that CPS called us, were days my wife had just won national awards for her advocacy work helping children! The irony is not lost on us, of course, – that “the world” is starting to understand the issue, but the neighbors may not yet – for a very long time.
However, I must say that once these signs went up in our yard (a year ago May), and my wife painted a mural on the house with “Neighbors Talk To Each Other” and “Say Hello” in the mural… The complaints have 100% stopped and the signs and mural have actually been great ice-breakers and generated several nice conversations with new folks in our neighborhood.
When Angela brought us the signs Tamara protested a bit: “The kids aren’t Autistic,” she said; “they have lead poisoning – you know that.” Angela (ever so wise!) said – “Just try it and see—people understand what Autism is; they don’t understand what lead poisoning really means, you still have that fight ahead of you,” she said.
Avi received his Autism diagnosis in April of 2014, when he was nine years old.
On Facebook yesterday Tamara posted an article discussing “the increase in diagnoses of Autism as a possible alternative explanation of the recent [apparent] enormous and steady increase in Autism rates”.
This is not to say that there are not a lot of cases of Autism, and that it is not a significant and troubling issue for our world (and especially our country today)—there are, and it is.
We are also not in any way trying to be dismissive of the impact that global increases in environmental toxicity can have on Autism rates. We believe (based on our experience and research) that environmental toxicity plays a clear and significant role in Autism and related cognitive and behavioral disorders, and that it is highly likely that environmental contaminants (even in very trace amounts) can act as a trigger for people who may have a genetic predisposition to these specific symptomatic expressions of exposure.
We shared the article because we felt it is a sound and rational argument (based on our personal experience with our children) that perhaps increased awareness – and/or simply increased labeling of this symptom cluster is part of the reason for the increased number of children being diagnosed as Autistic today.
If you haven’t seen a preview screening of our film yet, you might not fully understand the reasons we agree with these conclusions, but let’s summarize it by saying that in our opinion (which is a well-researched, scientifically backed and also personal-experience-based opinion) many (millions of) children who have a symptom cluster generated by early childhood lead exposure are – in fact – routinely being diagnosed as Autistic.
They are not, rigorously, “exactly” Autistic—but they are nonetheless being diagnosed as Autistic—simply because there is no diagnostic code (in the DSM Manual) for the nearly identical cluster of symptoms caused as an eventual consequence of early childhood lead exposure / lead poisoning.
Here’s how it works (you may need to read this more than once—as it is intrinsically complex!)…
Fact #1: Lead has a 30 to 45 day half-life in the blood. As soon as the once-circulating lead ions have passed the blood/brain barrier and been deposited into brain tissue [when lead does its initial devastation to the developing brain], as well as skeletal sites, the lead seemingly “vanishes” – only in terms of significant measurability in blood tests—resulting in the catastrophic invisibility of obvious etiology for “Autistic-like” symptoms.
Fact #2: The brain injury/damage to the developing brain from lead poisoning cannot be predicted, observed or fully assessed until the child’s brain has developed past the following three critical cognitive development milestones (and significant/practical quantitative measurement junctures):
1. learning-to-read (~ages 5-7 / kindergarten, first & second grade)
2. required usage of reading to learn (~ ages 8-10 / third, fourth, fifth grade )
3. development/required utilization of executive function (~ages 13-25 / middle school, right up through young adulthood)
Fact #3: Many outward behavioral markers and cognitive/processing impairments common to both Autism and brain injury/permanent damage* resulting from lead poisoning are identical/indistinguishable.
So it is inevitable – in the absence of the obvious “smoking gun” of a currently substantially elevated Blood Lead Level – that many, many children who were lead exposed / lead poisoned [an arbitrary distinction based on a number located on the continuum of neurological damage that is “inversely logarithmic” (i.e. the proportionally greatest damage is done at the lowest levels of exposure)] – and whom were typically NOT tested during the critical window of BLL-based detection (not tested as crawling babies or toddlers), and therefore never diagnosed – are being simply labelled as “Autistic”, “Asperger’s”,”ADD/ADHD”, “SPD”, “OCD”, “ODD”, etc.
In the case of injury to the brain from lead exposure/ lead poisoning, these labels all point to symptom-clusters that are epiphenomenological in nature (i.e. in turn caused by something else). [Really, when you think about it this is almost tautological/borders on unresolvable philosophical (epistemological/metaphysical) questions – I mean, you could easily take the position that any/every disease is ultimately at least partly the result of some prior other exposure/damage – right?!]
Said another way, the later developmental fingerprint of early childhood lead exposure on a young child (the symptoms generated as their brain develops but after the lead has left their bloodstream*) can look EXACTLY like Autism (and in other cases, ADD/ADHD and other diagnoses) to both the untrained and even many well-trained eyes.
*When a child is exposed to lead, the lead bio-mimics calcium in the body. It is absorbed by the brain in the place of calcium and causes neurological (brain) damage. The neurons impacted at the time of the exposure are permanently damaged (permanent brain damage.) Some lead then leaves the body but much of it is absorbed by/incorporated into the structure of other tissue and bones – and is no longer detectible by a blood test (or other easy/ cost effective medical test) – so all that is left diagnostically is the impact of the brain damage caused at the time of exposure. The scope of this impact is usually not noticed until YEARS after the child has been exposed to lead because the scope impact is only realized as the brain fails to develop normally (in function and complexity) as it otherwise would have at the various stages of neurological development in a young child.
In terms of the common/apparent differences between “‘true’ Autism” and a “lead poisoning-induced Autistic symptom cluster” – there are often a few distinct markers missing (generally a lead exposed child will not have an issue with eye-contact that a more typical Autistic child may have, for example and children with a less acute exposure may be more verbal than a more significantly lead-exposed or more typical Autistic child) but otherwise, for all intents and purposes, a lead poisoned child may be indistinguishable from an Autistic child and accordingly, lead poisoned children are getting labeled as Autistic by both the medical and educational systems every single day.
This is all an issue primarily because children are not consistently getting comprehensive blood lead testing as babies. By the time they are diagnosed as Autistic they no longer have lead circulating in their blood and there is no evidence that they may have been lead poisoned, and the intake forms and questions around an Autism diagnosis do not generally ask if a child has (ever at any point in their life) lived in a home built before 1978 and been potentially exposed to dust containing deteriorating lead paint.
Parents need resources to help their children.
In the absence of diagnostic terminology and standards for the cluster of symptoms exhibited by a particular lead poisoned child, a parent who knows their child was lead poisoned may resist the Autism diagnosis—but since there are no resources available otherwise (people just don’t understand when you say “my child has a brain injury from lead poisoning – not Autism”), parents will often reluctantly acquiesce to the Autism diagnosis offerred by the medical establishment and the educational system in order to be eligible for services. It’s not “wrong“—the system (pediatricians, social services, educators, administrators, et al) perceives it as Autism—but it’s also not quite “right”. That however, depicts the less common scenario, …
In most cases, there is not a known or documented history of lead exposure (primarily because so few children are tested—and of those few that are, it may not be early enough—or during the most opportune “window“, in terms of an exposure and lead’s subsequent “half-life” in the bloodstream), so it is more typical that a child will – at two, three, four or five years old – be diagnosed as “Autistic” because he or she has several markers on the spectrum – and the parent will never know that the genesis was actually lead exposure.
These parents will (in some cases ) think of their children as “different from other Autistic children”—or perhaps (in some cases) as “higher-functioning”. But the underlying diagnosis of a brain injury due to lead poisoning—the diagnosis that could allow for proper interventions and therapies to take place—never occurs, because the parent does not know their child has a brain injury due to lead poisoning… they just consider them “Autistic.”
Please note: we’re certainly not saying this is true for ALL or MOST cases of Autism—but we do know that for a significant fraction – possibly as many as 1/3 of diagnoses – this may be the case.
Some say that the brains of Autistic children are “different“/”unique”. and that this should not be viewed as a “disorder” in the way it is. Please consider that perhaps the brains (of at least a portion of these children) are “unique” because they have a brain injury due to lead exposure as an infant.
Avi says: “I don’t have Autism—I have an Autism Diagnosis“
As an example, Avi (our ten-year-old son who had the most severe lead exposure) is brilliant; he has an I.Q. of 130 (after/despite acute lead poisoning—the impact of which is generally measured by a loss of I.Q. points.) However his visual memory is in the 4th percentile. He is indeed unique: he is whole, he is complete—he also has a brain injury, and will not develop the skills to become the brilliant scientist or scholar or philosopher he may eventually become without the proper interventions and academic accommodations needed to address his brain injury.
Avi was just recently rejected from a wonderful private school for Autistic kids – a school with a ratio of close to one teacher for every two children. He was specifically rejected (after a comprehensive evaluation process over several days) because the school’s staff determined that (as we have believed for quite some time) he needs one-on-one educational assistance and interventions—to address both his brain injury/learning impairments and his overall very high intelligence and incredible thirst for knowledge.
As a result of this apparent paradox (which does not align with most teaching methodologies—including those targeted for Autistic children), Tamara and I have been in search of an appropriate school for Avi for more than a year. In a “mainstream” classroom, without that kind of highly interactive environment, he became suicidal in 2nd grade, and we have been looking at—and applying to—various alternative schools ever since!
But I digress.
We know about this increase in diagnosis of Autism and the likelihood that it is in part due to increased diagnosis of a cluster of symptoms as Autism (even though these symptoms may not in fact “be” Autism) … and we know this because our own son is part of this statistic – this group of lead-poisoned children who – for lack of a more sophisticated, nuanced, flexible system – are lumped together and labeled “Autistic”.
In spite of the emphatic, amused/incredulous retort—on camera, in the film—by Avi’s neuropsychologist (one of the top in the world, who works with lots of lead poisoned children) that “There is no way that child is Autistic!,” we finally capitulated to the diagnosis last April (2014). This is when the Multnomah County health department diagnosed him as Autistic. This put his symptom cluster into language the school system could better understand, so the IEP for his education has now added “Autism” to his “Other Health Impairment: Brain Injury From Lead Poisoning” labels. The Autism diagnosis has gotten us an allocation of 161 hours a month in free respite care paid for by the county (starting next month). It has made him eligible for services and interventions like practical skills training and other therapies.
We’re benefiting from this “misdiagnosis” (and received absolutely no benefits before… none—because no one knew what to make of the diagnosis of “lead poisoned” because again – the diagnostic manuals still do not have any designation for the later-in-life symptom clusters/conditions originating from an early childhood exposure to lead.)
The system is broken, and we’re trying to work within it. We’re also trying to fix it, by spreading the word and helping other parents in the same situation.
Why share this with you now?
I just wanted other parents of Autistic children (or children who they think might have Autism) to think back and see if this helps to connect any possible dots for some folks out there:
Does your child have an Autism diagnosis? Did they live in a pre-1978 home as a baby? (One in three American children today has had an unsafe level of lead in their blood in their lifetime, so the odds are that more than 30% of the children of parents reading this did)?
Thanks for reading. Please ask questions if you have them.
If you have a child who is Autistic who you think may have been exposed to lead as a child, please consider joining our Facebook support group for parents of lead poisoned children (send Tamara a message here and she will add you.) You might find some answers there.
Father of a lead poisoned children
Sunday, May 24, 2015