blind luck or pre-ordained coincidence? - a piece about auti

Just how many autistic kids are out there?

A question I have pondered, well, I can’t begin to tell you just how many times, but a question which has popped up again and again. Over the course of the last 5 years, my “cyber life”, I have read reports which assert one figure or another, with rarely the source cited. On message boards and in email group mailings I see repeatedly people stating “19 per 10,000” or “1 in 250” or some figure in between. And yet, no one really seems to know for sure, just how many auties we share this great land of ours with.

I recall watching, more than a few years ago, a story on 60 Minutes about a place in New Jersey, a small town called simply “Brick”. Something was happening there, in Brick, something which was crazy and mysterious and horrifying all at the same time. Several mothers had children in special education, and when they happened upon each other they discovered that they all had autistic kids. This seemed so astounding, that in a town the size of Brick (about 77,000 people) that so many autistic kids should all be in the same neighborhood like that. So they started sniffing around, and everywhere they looked they found more autistic kids.

A check with the CDC and NIH found that autism was “known” to occur at the rate of 1 per 10,000. Imagine the shock and fear that greeted these women when they realized that they were living in a community with at least twice that rate of autism. They managed to corner their elected Representative in Congress, Christopher Smith, who along with Senator Robert Torricelli got the funding and directive for the CDC to come in and do a survey to see what was happening. At the time, these mothers were convinced that the chemical plants that were on the outskirts of town, plants their husbands worked at, plants which belched emissions into the air and spewed wastes into the waterways, these backbones of the local economy were the reason so many of their children were on Spectrum.

So the CDC came in and began canvassing the town, actually going door to door in some neighborhoods, identifying all the auties they could locate. POSSE, the group formed by the mothers who originally discovered this “cluster” stayed right with the people from Atlanta, determined to see for themselves what was going on. And when the dust settled, the CDC came up with a rate of 6.7 children per 1,000 as being on the Autism Spectrum with 4.0 per 1,000 being autistic according to DSM-IV diagnostic criteria, the current gold standard.

Stop for a minute and think, 4.0 per 1,000 was 40 times higher than the rate the CDC had posted on their website at the time, 1 per 10,000. That is 4,000% higher than what was known in all official circles as the prevalence rate for autism. 4,000% higher…

When faced with the obvious question which came from this revelation, why the Hell are so many of our children autistic, the CDC did something truly amazing. Red flags did not go up, sirens did not blare, the cluster-busters did not come roaring into town to sample the water and examine the flappers. Instead, the CDC quietly folded the tent and returned to Atlanta, with the sole explanation to POSSE (and the rest of the world) that Brick did not represent a cluster because the CDC was aware from NJ school records that there were approximately 100 OTHER NJ communities with a similar prevalence. And that concluded the Brick study, with the exception of a couple of very, very careful and deliberate revisions to the “official” write-up. Oh yes, the CDC also moved a decimal point on the website, changing almost overnight “1 in 10,000” to “1 in 1,000”.

(A brief aside here, were a study conducted about childhood cancer, or leukemia or deaths by drunken, abusive step-fathers, and the prevalence rate for Smalltown, USA was discovered to be 40 times the established rate, do you think that the media in our country, which survives on mass sensationalism and shock-value stories would allow this to fade into obscurity?)

At this point in my life all of my children were here on Earth, but I had no idea what “autism” was, beyond that Rainman character Dustin Hoffman played. My son, my beautiful red-headed cherub was already displaying autistic symptoms (he was 2 when I watched the 60 Minutes story), but we had no idea. Looking back I can see that we should have been all over it, and now vacillate between kicking myself square in the ass for being asleep at the switch and trying to be philosophical about the whole situation.

After all, my wife and I were not alone at missing the signs. Our pediatricians also missed it (my boy was referred to a developmental psychologist by Easter Seals), as did all our families and friends, as did the local school officials.

Time rolled on, and right about the time my boy got diagnosed, 1998, I got plugged into the vast world wide web. Almost immediately I began searching for information about autism, any and all information. Several themes kept simmering, vaccination damage, the veracity of Lovaas, toxic metal exposure, and occasionally prevalence. Some people, generally adults with autism or the parents of children on Spectrum kept pushing the prevalence rate up, arguing the CDC’s 1 in 10,000 was ridiculously low, while others, a few parents, but more commonly outsiders to the autism experience, medical personnel, psychologists, school personnel kept insisting that no, the numbers were correct.

Around this time I had the scales fall from my eyes, and I began to meet children on Spectrum in my own small town. It seemed that no matter where I turned I couldn’t help but run into another one. I began to keep track of them, “achieving” my first dozen quickly, within a couple months. And yet the school records did not reflect this. When I checked in the State DOE records, I found that my entire county only had 2 autistic kids. How could that be when I had already met a dozen?

The debates on the boards were often rather spirited, and more than a few times I have had to defend my own assertions as to which numbers were most accurate. Many of the studies the opposition referred to were suspect, either for being too dated or else for being too small to give a trustable figure. Some people simply fell back upon the numbers posted by the states to the US DOE.

And then came the first reporting out of CA.

For right or wrong, CA does everything first. So when The ADA was first being written, way back in the very late 60’s, CA set up autism as a separate category, and began to tally the number of children served by the Regional Centers for Developmental Disabilities who had confirmed diagnoses of autism beginning in 1971. There was no fanfare to this, and to find out you would have had to slog thru various demographic spreadsheets. Until the M.I.N.D. Institute entered the picture, and decided to go back thru all those records and collate the information.

The work by M.I.N.D. mirrored the work by the CDC in Brick, and they too came up with a figure of about 4 per 1,000. They also did something that POSSE couldn’t back east in NJ – M.I.N.D. was able to show how the rate had changed over time. Because they had statewide numbers for the children served by the State and Federally funded Regional Centers categorized by years, they were able to show how many kids there were, and how many kids there are.

I do not have before me right now the actual numbers, but those can be googled easily enough should any care to have them. I do recall very clearly a couple of very interesting things from the first Rollens report. According to the statistics generated by CA, 4 out of 5 autistic children were born after 1980, a year which represents a jump in prevalence. Even more amazing was that 2/3 were also born after 1990. Think for a minute, in 28 years of service to autistic kids (1971- 1999), representing nearly 50 years of birth cohorts (the Regional Centers serve all children under the age of 18), 80% of the autistic kids had been born in the last 20 years (a 500% increase over the previous 30 years), and 67% were born in the last 10 years (an 800% increase over the previous 40 years).

Even more terrifying was the follow up report (one cannot expect a report like the Rollens’ to go unchallenged, especially by those for whom to admit that the numbers were correct would upset the foundation of their personal knowledge-base). In 2002 M.I.N.D. looked at the most recent reporting by the Regional Centers and found that during the time period of 1999 to 2002 (3 ½ years total) California had added an additional 8,554 new cases of core Spectrum autism, compared to 10,206 cases of autism during the first 28 years of reporting. This means that 45% of the total caseload of autistic kids California has had in the last 31 years have been added in just the last 3 years.

This same report refuted the challenges to the earlier report that better recognition, expanded diagnostic criteria or migration accounted for these numbers. M.I.N.D. found that the same accuracy in diagnosis occurred in the mid 80’s (prior to DSM-IV) as it did in the late 90’s, roughly 90% accuracy when the diagnostic records were reviewed today. They also reasserted that the CA Regional Centers only tallied core disorder autism, not HFA, PDD-NOS or Asperger’s, none of which are served by the Regional Centers. Additionally, the follow up report also found that over 90% of all the autistic kids served by these centers were NATIVE-BORN CALIFORNIANS. Not migrants, not mis-classes, not new discoveries.

What in the Hell is going on?

Something is going terribly wrong for a developmental disorder like autism to accelerate in this fashion. Is it in the air we are breathing? The additives to our food supply? Poisons in the groundwater we do not know to filter or treat? Organic mercury shot into our babies arms before their brains have fully developed?

We may never know for sure (although I am ever hopeful the truth in the matter will be made known). But that brings me back to the main thrust of this piece…

I hold to the numbers the CDC determined in Brick as being the most accurate. Unlike many of the other studies which purport lower rates, Brick remains the only comprehensive study of any locality which used proper census taking methods, most notably a door-to-door canvas. You want to count the crawdads living in a stretch of crik, you take off your shoes, roll up your cuffs and start flipping the rocks while someone holds the net. Catching two, guestimating the number of rocks and using number manipulations to cipher how thick they ought t’ be just doesn’t cut it.

So when I look at the number of kids in my county, ~5700 kids PK-12th, and I think I have met 21 auties who are from my hometown, that does not seem so remarkable. But if you stop and think a bit a different picture comes to light. All of the kids I have met with two exceptions are under age 13 but older that 5. So that makes it 19 out of ~3400 kids. Without going through the school records, surveying the local pediatricians, psychologists and social service agencies, or running advertisements to draw them out of the woodwork. No canvassing, no exhaustive searching. Just those kids whom I have encountered in the course of my mundane existence while traveling on the same roads to do the same activities week in and week out.

How many might there be still out there, across town, families who have installed locks that keep them in as well as keeping you out, families who face the slow-boil crisis that we parents of autistic kids live so long we forget that there is any other life being lived.

What are the odds that just going through the daily grind you would encounter 21 autistic kids within 3 years? How about attending a birthday party at McD’s and standing next to a complete stranger outside the jungle gym and finding out she has a nephew with autism, even as you have a son? (it happened) How about showing up at a meeting for special ed concerns and of the only 4 families represented there two of them had an autistic child? (it happened) How about being at flea market 25 minutes north of your town with only 70 booths that gets perhaps300 customers thru the door on any given Sunday and meeting a boy with autism who is not from any of the other towns within the region, but from your own small town? (it happened)

What are the odds that you could work at a place with 50 people, and they hire a fellow part-time temporary who has a child diagnosed with autism during the summer he worked there? (it happened)

Can it be all just coincidence? Is it because I am so in tune with autism that I sniff these children out like a pig finds truffles?

I tell you, we don’t even begin to suspect just how many people live among us on Spectrum. Never mind the literally tens of thousands of adults on Spectrum who are undiagnosed as such, living in residential, or residing in the homes of their aging parents or adult siblings. I am talking about the next generation, not generation X or generation Y, I mean generation A, those born after 1990 or even 1995 whose numbers are beginning to swell the ranks of hand-flappers and howling-fidgets in a way even the Amway pyramid envies.

So last night, I am surfing, on a mission. My boy really, really likes Nintendo-64, especially the game Zelda, the Ocarina of Time. He plays it whenever he can (and he is really quite good, I would lay money he could beat anyone his own age), he draws the characters and maps from it from memory, he acts out his favorite scenes. I discovered last Sunday that they make Zelda action figures, which go for about $20 each on the collectors market (they are from 2000 and as such are gone from Toys R Us). So last night, I am on the web, looking for someone who has them for sale.

I scroll through a couple dozen sites that specialize in scalping toys to fools like me who failed to find them at the ordinary retail outlets. Finally, I hit the world’s rummage sale, Ebay. I quickly found an auction with all three figures to be sold as a set, and I bid the damn things up to $36.01 (not including the add-on $9.95 shipping) before I get outbid in the last minute. So I redo the search for them using “Zelda figure”, and get a list of 17 valid auctions. I see a pair of them (“Ganadorf” and “Link” for those who are curious) with a “buy it now” price of $23.00 + $6.95 shipping. Doesn’t take me too long to hit the go button and make them mine. (I found the third figure “Impa” with a buy it now of $5.99 + postage and got it too, so I got a complete set for my boy after all).

So I go ahead and Paypal the lady with the pair for sale immediately (I want these ASAP you understand), and in the comment box of the Paypal payment notification I write “Thank you so much for offering these figures at such a reasonable price. You are going to make an 8 yo autistic boy very happy on Xmas morning”.

So I get her reply the following morning at 5:30 (I get up very early to answer my email and catch up on the boards before I leave for work) and couldn’t believe her reply. She thanked me for my quick payment, and then in the same breath told me that her 3 yo was just diagnosed with autism last summer.

What are the odds of that? I look for a damn toy on Ebay, get a list of 17 auctions and the first one I bid on is put up by a woman with an autistic son? Maybe that can be explained away by expanded diagnostic criteria or foreign adoptees with institutional autism or one of the other less-than-likely excuses those who would deny the epidemic that is autism so often make.

1 out of 17 auctioneers has an autistic kid. And several of the other auctions were multiple postings by the same seller. 1 out of 17 and I hit her on the first damn try.

Bizarre coincidence or symptomatic of an ever escalating prevalence rate? Call our children Legion for they are many. How deep will they have to become before our elected leaders begin to really take notice, before our Federal health organizations begin to expend some research dollars on meaningful topics, like effective remediation services or bio-medical interventions and not piss the few dollars they do allot our kids into the endless search for the ever elusive autism gene (or 6 genes as they decided it must be in 1999 or 2 dozen genes as they suggested in 2001, why not just say the 35,000 autism genes and be done with it?)

1 out of 17, what would those odds be? Perhaps I should go back and contact all those other sellers and ask them if they too have an autistic child…