Autism Epidemic! ...Or Not?

Lisa for further on this debate I posted the following:

Denials Do Not Explain Autism Epidemic, Environmental Factors Must Be Researched

http://autisminnb.blogspot.com/2010/01/denials-do-not-explain-autism-epidemic.html

As you will see if you read the above post the source for my comments is Dr. Thomas Insel, Director of the Interagency Autism Coordinating Committee. I encourage everyone to read my comment and the transcript of the interview with Dr. Insel which I provide a link to in my comment.

Thank you.

Hi Lisa Jo

I wouldn’t say I’m arguing for the ‘not’ perspective. Rather I’m saying theres no way for anyone to know. NO science has been done.

As for Harold’s comments about environment – they’re irrelevant to the idea of an epidemic. Everyone I know acknowledges that environment must play some part in autism causation – how much is unknown as we don’t know what the component(s) is/are that contribute to autism. Harold is merely trying to create a strawman arguement that equates environment with epidemic automatically.

I personally think that any environmental components that are involved in autism are likely to be very very small. Dr Insel, as cited by Harold, has stated that up to 50% of autism increases are due to diagnostic substitution, better ascertainment etc. I’ve read pieces that say that up to 40% of autism can be explained by genetic differences. That leaves 10% unaccounted for. I suspect that figure will be reduced somewhat over the next few years. My own guesstimate is that the autism ‘epidemic’ fugures probably account for around 2% of the total ASD population. This is inline with the estimates put out during the Autism Omnibus hearings (and by the Cedillo’s experts it should be noted) that the increase in autism that can be said to be environmentally responsible is actually small enough to be difficult to be detected via epidemiology.

Not to be a Pollyanna, but it seems to me we’re really all on the same page. That is:

some proportion of the increase in autism diagnoses can be accounted for by factors that are not related to an absolute increase in cases of autism.

Some proportion of the increase in autism diagnoses CAN’T be accounted for in that way.

Some proportion of cases of autism are probably caused by environmental factors.

Some proportion of cases of autism are probably NOT caused by environmental factors.

The debate, then, is over percentages – something that we can all agree is tough to nail down.

Lisa

Kev

The arguments about environment are directly related to whether there is a real increase or not. That is why they were covered by Dr. Insel in his comments. Genetics do not explain changes on the magnitude being discussed, genes don’t change that quickly over a ten year period.

As Dr. Insel noted the current thinking is that autism is caused by the interaction of genetic and environmental factors. It is the presence of the environmental factors in the equation rather than genetics alone that points to possible real increases:

“DK: So that leads to the 64 million dollar question: If there is an actual increase in incidence year to year, wouldn’t there necessarily also have to be an environmental component to at least some cases of autism? In other words, if it was 100-percent genetic, wouldn’t you see relative stability?

TI: Yes. I don’t think anybody is arguing that it is 100-percent genetic. I mean, I think that there are just a lot of questions that this raises. And I don’t think in those terms, exactly, that it’s either genetic or it’s environmental. From my perspective, it’s almost always going to be both. And the only question is: How do you nail down this interaction, how do you go after it?

DK: If there is a true increase, wouldn’t that be due to environmental factors rather than genetic factors?

TI: I don’t know that anybody would argue that, or that anybody has argued that. There is no question that there has got to be an environmental component here. The problem for us has been trying to find the right way to get our hands around it, and to identify what that is most likely related to.”

That for Kev’s benefit is the relevance of environment and autism increases as explained by Dr. Insel.

Given the numbers, and given the 50% unexplained, Dr. Insel has also stated that:

“, as far as I can tell, the burden of proof is upon anybody who feels that there is NOT a real increase here in the number of kids affected. Because all of the evidence we have up until now says that, well there are what we could call – I wouldn’t call them ‘trivial’ factors – but they are factors that are not related to incidence, but would be simply related to prevalence, like ascertainment. But they don’t really explain away this huge increase.”

It is no longer enough for those who want to believe that autism disorders are just natural variations, just part of a natural neurodiversity, to keep repeating their beliefs. It is time for the increases in autism disorders to be taken seriously.

Not sure what TI means by “Because all of the evidence we have up until now says that, well there are what we could call – I wouldn’t call them ‘trivial’ factors – but they are factors that are not related to incidence, but would be simply related to prevalence, like ascertainment. But they don’t really explain away this huge increase.”

If I had him here, I’d ask him what he’s talking about, and why these “non trivial” “ascertainment” issues don’t explain the huge increase. Should they be ignored? Discounted? How should they be reckoned with? IMO, ascertainment is pretty important (assuming he means what I think he means by the term!).

Meanwhile, on a related issue — the term “genetic” is often used in this conversation to mean “inherited.” But there seems to be a good deal of research out there that suggests that the genetics of autism are at least partly NOT related to inheritance but to spontaneous mutation (genes that mutate during or before gestation, having nothing to do with inheritance).

And just one other point relative to this topic: if we find that the causes of autism are genetic/environmental, which seems likely, that neither proves nor disproves a huge increase in actual incidence.

As others have noted, the fact that a disorder has been named is likely to lead to hundreds of percentage points in increase as people discover they’re diagnosable – but that doesn’t necessarily imply that the actual number of people with the symptoms has increased.

Bottom line, though: I think the issues are really about relative quantities of people who DID and DO have symptoms now identifiable as ASDs. TI and others may have opinions about those numbers, but so far they haven’t pinpointed any data that I find absolutely convincing.

I should mention that when Tom was waiting to be diagnosed TEN YEARS AGO the wait time was over 10 months. The reason: there were only about 10 developmental pediatricians in the state of PA! In other words, there weren’t enough specialists to go around.

Lisa

http://www.spectrumpublications.com/index.php/columns/debunking_epidemic_denialism/

The CDC found an increase from 1 in 150 for children who were 8 years old in 2002 to 1 in 110 for children who were 8 years old in 2006. How would better diagnosing account for that? There were no changes in diagnostic criteria during that time period.

Maybe the kids born in 2002 were diagnosed at age 5 and the kids born in 2006 were diagnosed at age 3 because of better diagnosing? But by age 8 it’s pretty hard to miss autism, except for the very mild kind.

And they were supposedly going to announce an increase to 1 in 91 but they decided to leave out from their 2002 statistics the states with the highest autism rates, so that the increase would seem a bit less drastic.
http://www.ageofautism.com/2010/01/mark-blaxill-lies-damned-lies-and-cdc-autism-statistics.html

Kev you said,

“I wouldn’t say I’m arguing for the ‘not’ perspective. Rather I’m saying theres no way for anyone to know. NO science has been done.”

Good grief, is this your new line to justify denying an increase in autism rates? If so, you really need to get a better line. There has been a LARGE amount of research done into the question of whether autism is increasing or not.

Go look on pubmed. Go look at the data the CDC has published. Go look at Autism Speaks site. Go search on Google.

You have written about the research yourself many times.

How on earth can you possibly write that “NO science” has been done with a straight face? Does the idea of personal integrity mean nothing to you?

To be even more exact then, no science has come to any firm conclusions.

But by age 8 it’s pretty hard to miss autism, except for the very mild kind.

Not according to the CDC. In the most recent survey, of the 1% of 8-yr-olds categorized as autistic, nearly one in four had not been given that diagnosis before. That is to say that 23% of 8 year olds identified as autistic were mislabeled as non-autistic by their schools, parents and doctors. That’s an interesting fact for those who claim that autism is easily identified.

Read more: http://leftbrainrightbrain.co.uk/2009/12/cdc-report-1-in-110-kids-are-identified-autistic/#ixzz0df6MFaCq

ANB, how do you explain this?? It’s baffling: why the huge rise if autism is “easily missed?”

IMO, there are so very many different ways to label a kid with delayed/idiosyncratic development and speech issues that it may be tough to choose among them… but even so!

Lisa

It’s easily missed if there’s little reason to look for it.

Lisa, have you ever seen the arrow in the FedEx logo? If not, you will now. The arrow has always been there, but there was never a reason for you to notice it. It’s like that with ASDs. Some parents don’t seek a diagnosis unless there’s a reason. That could be services offered, the urging of a relative, or the recommendation of a teacher. As awareness of autism grows, more parents seek out the diagnosis.

ANB – that seems reasonable if your child is verbal and engaged, but delayed and quirky.

But if your child is non-verbal, unengaged and stimming at age 4, or 5, or 6 — surely the vast majority of parents would notice that SOMEthing is up.

And long before a child turns 8, he’s in the world of sports, preschool, kindergarten, summer camp… hard to imagine that a child with full-blown autism would “pass” until he was 8 years old.

Maybe you’re thinking he’d wind up with a non-autism diagnosis such as non-verbal learning disorder, or possibly ADHD? I would have say “yes” to that ten or fifteen years ago. But today, “awareness” is so sky-high that even kids who probably DON’T qualify for autism diagnoses are getting them…

Lisa

“It’s easily missed if there’s little reason to look for it.”

Indeed.

When I was on clinical placement in a LD (Intellectual Disability) service, a significant minority of my educators caseload were people with autism who had been in contact with care services for a long time, including living in ‘Special’ homes.

Several had not been diagnosed with autism until re-evaluation into adulthood (two were about 18, oldest was over 80) after the closure of their ‘Special’ home or migration between service areas. Thier existing diagnosis – although probably technically correct at the time – simply didn’t cover the full range of their impairments.

One notable case was repeatedly discussed as ‘clearly autistic’ yet was in her late 40’s without a diagnosis, mainly because her parents refused to accept the term.

Sure, we’re talking less than 6 or so people, but that was one caseload out of 5, in one department, in one service in one county, during a 11 week placement. And amongst people that had been in contact with services for their ‘difficulties’.

Sorry, but I don’t know what happened to the rest of my above message.

What I was going to say was, we shouldn’t assume that anyone not diagnosed with autism before 8 is ‘mild’ or that they are ‘passing’ as neurotypical (which I don’t think ANB was saying, nor is it implied by the 25% quote from earlier). It’s entirely feasible that they may have been assigned another ‘full-blown’ diagnosis.

I believe this re-assignment of people with ID as people with ID and autism has been mentioned explicitly here before. Such people would unlikely be considered ‘mild’ , although, as I’ve pointed out before, I’ve worked with people with Aspergers who have qualified for ID/LD services due to borderline IQ’s. One subsequently ended up in a specialist residence partly due to his vulnerability.

Thanks Dedj, for that insight.

Do you think, though, that the diagnostic differences were still as prevalent when the most recent big study was done (the one CDC has cited for the new higher rates of autism) – in the mid 2000s?

I don’t have an answer – and it sounds like you have very solid experience in clinical settings!

Lisa

I live in California and in California we receive services for our children with Autism through “Regional Centers.” The Regional Centers of California are quite restrictive on who can receive such services. In the past 10 years the Regional Center caseload has increased 1,200%.

My son is severely affected with Autism (non-verbal, constant self stimulatory behavior, etc.) and it took 3 assessments to get him services, so I can speak from experience that these people are not giving services out willy nilly!

It’s not just better ascertainment! Something is happening to our children – we just don’t know what it is yet.

But today, “awareness” is so sky-high that even kids who probably DON’T qualify for autism diagnoses are getting them…

Unless their pediatricians neglect to refer them to a child psychiatrist for an official diagnosis, but hey, like that would ever happen!

ANB you said -

“Not according to the CDC. In the most recent survey, of the 1% of 8-yr-olds categorized as autistic, nearly one in four had not been given that diagnosis before. That is to say that 23% of 8 year olds identified as autistic were mislabeled as non-autistic by their schools, parents and doctors.”

That is not actually what the report said. It said -

“Among all children meeting the ADDM ASD surveillance case definition, approximately 77% had a documented ASD classification in their records”

So that is to say that looking in the records 23% did not have an indication of autism in their records – not that they did not have a diagnosis of autism or that they were mislabeled by their schools, parents, and doctors.

This is a subtle, but important difference.

I am sure that some of the cases are new but it is not safe to assume that all of them had been completely missed.

I started teaching Special Education back in 1982. My first few years teaching, there was not one child who could be classified as having Autistic Disorder (or Kanner’s Autism). Mostly, I dealt with children who had Down’s Syndrome or Cerebral Palsey, so my first experience with a child with Autistic Disorder wasn’t until 1989.

After that, in ‘92, another child was added to my class. In ‘95, another. From that point on, one or more new children would show up each year in my class that would be considered as having Kanner’s Autism. I’m not talking about children who are a little developmentally delayed; I’m talking about stimming, self injurious, non-verbal children.

The town I live in is not huge. I have 15 autistic children in my classroom alone, and the district has had to add 3 more classrooms that are almost full with autistic children. There is no possible way you can tell me that there is no actual increase in Autistic Disorder and that it is just better diagnosis. All you have to do is talk to a school or special education teacher.

Thank you for your anecdote.

Teacher –

Thank you! Thank you for your service to our kids, and thank you (sincerely) for your anecdote, which was very interesting, and which has validity as a professional observation / case study, notwithstanding ANB’s sarcasm.

You need to understand that on ANB’s home planet all “science” spontaneously materializes and no one has a bias except, of course, parents and any professional foolhardy enough to opine that environmental factors may play a role in the pathogenesis of Autism.

Of course, back here on the planet Earth, we understand that scientific hypotheses are properly formulated based upon observations and logic. A hypothesis formulated based on anecdotal evidence can progress to case studies, controlled studies, and to the formulation of a disprovable “scientific theory.” For example, the theory that environmental factors are contributory in the pathogenesis of autism.

On ANB’s planet they have concluded that (1) their planet is the center of the universe, and all other stars and planets follow complex, sometimes retrograde orbits around their home planet; (2) there are four scientific elements: “earth”, fire, wind, and water; and (3) autism is genetic.

-Bob

AutismNewsBeat,

Your condescending and rude dismissal of my post speaks volumes about your character. If you cannot discuss this politely, then perhaps you should not discuss this. It is no wonder why there are so many people put off by your arrogance.

First, to Twyla:
If you think that the general atmosphere of autism diagnosis didn’t change between 2002 and 2006, you weren’t paying attention. Little organizations like Autism Speaks changed the landscape of autism in 2005. Also, take a look at comparisons of the rates of increase based on IQ in 2002 vs 2006 in the ADDM data; you’ll find the rate of increase of the higher IQ groups far outpacing the increases of the under 70 IQ category.

To Teacher:
The dates you mentioned are almost ironic. Just two years before you started teaching in 1982, the DSMIII criterea first recognized autism as an ‘official’ diagnosis; two years before your first experience with an autistic student, the DSMIIIr expanded the criterea; 2 years before 1992, when your next student was added, the most overlooked factor in autism prevelence growth began: namely the Americans with Disabilities Act and IDEA changes in 1990.
I would ask you what major changes you have seen in the administration of Special Needs students; have they been integrated into districts and classrooms? Have we now required that schools provide a learning environment for them rather than just a place to stay (and indeed discovered that they can understand and learn)?

Finally, if we can get past this idea that something insideous has been introduced into the environment over the past 25 years causing a massive increase in autism, the investigation, the REAL investigation into causations of issues surrounding subgroups and cocomitants within autism can begin. We have a wild diversity of groups and classifications within the spectrum, educational differences, abilities and deficits, recoveries and regressions. We are learning more and more by the year, but the debate over whether there has been a massive increase based on recent environmental insults diverts from looking at this disorder rationally. From what I can see, there are many many explainations for most of the increases, and not admitting that prevents us from finding any small pockets of increases that may be out there.

To Livsparents-

First, welcome to Lisa’s blog. You’re not an alias for ANB, are you? j/k

Second, if you (and others who agree with you) are correct — that there is no actual increase in the incidence of autism, then you ought not be concerned about diverting attention to unnecessary studies of environmental causes.

In other words, if Autism (or what we now call Autism, but used to call something else) has indeed always been with us at approximately the same % rate, etc., then there’s nothing to worry about. …Nothing to research. …It’s just “neurodiversity.”

We have spent hundreds of millions of dollars on pure genetic research (genomic association studies) which has yielded almost nothing. Why not spend a fraction of that money for a couple of years doing some high quality research on the epidemiology / pathogenesis of autism from the standpoint of environmental factors, and/or gene-environment interactions?

If research into environmental triggers turns out to be a dead end, the way the genetic research has been, then I’ll be among the first to concede that we should stop spending resources there. And I’ll send ANB a box of chocolates and maybe some flowers.

Look, there is absolute garbage “evidence” for anthropogenic (man-caused) global warming, and yet the world is clamoring for action that would devastate the global economy and do real harm, many orders of magnitude greater than global warming itself could cause, even if it does exist.

Meanwhile, there is a great deal of evidence supporting the hypothesis that autism is really on the rise, and that environmental factors are important. And there is a great deal of resistance toward doing anything about it or even doing new research.

If you (and others who agree with you) really think environmental factors have nothing to do with Autism, then let’s do the big necessary research and get it over with. If the science proves that Autism is nothing new, and not on the increase, then, fine, case closed.

I found it interesting that you refer to “small pockets of increase” that may be out there. By that statement, you appear to be conceding that environmental factors may be involved in “small pockets”. …So I don’t understand where you draw the line. Why you would object to the idea that “pockets of increases” might be a little …or a lot… larger? You seem to be agreeing with the principle — that there has been a genuine increases in Autism — but you are just disagreeing about how large the increase really is.

Given the foregoing, then please explain how you believe this would “divert from looking at [autism] rationally”?

I think Livsparents has an excellent point.

IMO, we couldn’t possibly be looking at the epidemic rise of a single disorder caused by a single environmental factor.

As many people point out correctly all the time, people with autism have completely different sets of symptoms, experiences with onset, and so forth. In addition, it’s clear that there are MANY confounding factors relative to the rise in diagnoses, beginning with changes in criteria and laws and including issues with state/national record keeping, cultures, and so forth.

That said, neither Livsparents nor I are saying “there is absolutely no rise in autism.” I think it’s clear that there IS a rise. But an explosive rise in a single disorder caused by a single environmental issue such as vaccines? I’d say that’s extremely unlikely.

So how big IS the rise? What does the rise really look like? Are we seeing an actual rise NOT in the number of high functioning individuals (who are only now being given the label of Aspergers or “HFA”) but in the number of children with severe regressive autism and serious GI problems? There’s no way to know if we don’t look at those smaller subgroups.

It wouldn’t surprise me at all if the changes in labeling and law coincided with a new environmentally caused disorder which strikes a relatively small group of children. But if we insist that EVERYONE with an autism spectrum diagnosis has the SAME disorder with the SAME etiology, I think we’ll continue to argue till the cows come home… and are milked!

Lisa

Bob, it’s Bill…livsparents is an alias since my wif and I began posting on message boards since I started this journey around 2004.

I’m not saying that autism has no environmental aspects, indeed there probably are either environmental aspects or an environmental/medical ‘nexus’, at least in some; especially those who suffer from other cocommitant issues like apraxia/aphasia or other disorders surrounding mitochondrial, seizures or GI etc. But if you start with the assumption that austim rates have been skyrocketing over the past 25 years, your bedrock for what to investigate is fatally unstable. If you start from that place, you disregard entire groups of the autism population as just ‘toxic neurological byproducts’ when they could very easily be groups that have always existed; you also discount the idea that issues prior to 1980 could contribute to a buildup of neurological issues.
You potentially focus instead on a reactionary time-is-running-out modality, looking at EVERTHING that has happened in the last XX years and weighing all on assumptions that are incorrect. If you start from the assumption that there is a tenfold or 100 fold increase (which many ‘causationists’ do) your scope is entirely different than if you have a 50% increase. I would hope that all agree that a 50% or even a 10% TRUE increase in rates is something worth investigating, but your investigations take a completely different tack.

I’d also like to challenge the concept that we spend very little on environmental studies and too much on genetic. If I were going to spend money on autism research, my first thought would be to get solid studies/epidemiology on who is on the spectrum and what their issues are. For instance, we’ve discovered that, in a broad sense, that GI issues are not more prevelent than in the general population, but are those affected by GI issues having different challenges, more regression (regression…now THERE’S a study to undertake, what does that subgroup look like and what are their issues/commonalities)?

Following up on Bill’s comment, I am also aware that there’s still some controversy over whether regression itself is “real,” despite quite a bit of videotaped evidence.

Does anyone know of ANY solid studies that support the idea that there’s a significant population of kiddos who developed normally and then regressed rapidly somewhere between their second and third birthdays?

Lisa

The ADDM data has a column on Developmental Regression which puts the number somewhere between 20 and 30%:
http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5810a1.htm#tab4

I know that Autism Speaks’ IAN database of their parent surveys put the number at 30-40%, sorry I’d have to dig for that one.

I think that there is no denying that regressions DO occur, and that they do occur in the timeframe after 1 and before 3. Based on the ADDM data, personal experience and countless testimonials, I’d say that there is a definite subgroup that regresses closer to the 12-24 month range. It’s one of those areas that I personally think is the most intriguing; it’s the only area left that really gives any creedence to a vaccine causation possibility.

If we could give solid numbers around this subgroup, determine patterns in timing and severity of regressions, other potential medical issues both before and after the regressions, and issues facing this subgroup, we could go a long way in dispelling (or verifying), medical, environmental, or just plain developmental ‘causations’. I can’t trust my own judgement however; since one my daughters is in this ‘regression’ category (my other daughter who is PDD did not regress), I’m extremely biased on the matter…

Hi Lisa, a quick google scholar search turned up “Validation of the phenomenon of Autistic Regression using Home Videotapes” from the Archives of General Psychiatry ( 2005)
Apparently it was a study of 56 kids autistic with regression /without regression and normal controls, with researchers looking at videotapes blind to the differing diagnoses.
Haven’t looked at the study in detail,or looked for criticisms of it, but on the face of it, it seems to be what you were looking for?
Am not sure that autistic regression is the only possible type of autism that may be at least partly vaccine induced though..Given that children are getting a vaccine Hep B on the day of their birth,and that this vaccine can cause suckling etc problems in monkeys, it may be hard to differentiate between a problem a child is born with, and a problem that was acquired due to an environmnetal factor ( in this case, a vaccine) that had its effect on the day day of birth.

Thanks so much, Hera.

I’m sure you’re right: there’s no particular reason to correlate regression and vaccines. It’s just that so many of the anecdotal stories of regression seem to center on vaccines: “My child was healthy and developing normally until the MMR. He developed a fever that day, and from that point forward began to lose skills and develop severe GI symptoms…”

The fact of that story being so common makes me wonder whether there isn’t some kind of specific “brand” of autism that includes regression around the time of vaccinations along with GI symptoms.

This is just speculation, though (ANB – just speculation, really!!).

Lisa

hi Lisa, you’re welcome. And I agree that is a subset it would be very interersting to study.
Have not verified this first hand , but i was readng that the vaccine injury compensation baord agrees that encephalopathy cqn indeed be a reqction ot a vaccine; but only if the fever goes to 102.5, ad that temperature is documented by a doctor…

So the take home message for parents apparently is if your child runs a high fever post vaccination, don’t treat it with a fever reducer which may bring it down, but race to the ER so a physician can document it. Of course, the fever had better not go too high because 103 and above apparently cannot be considered a vaccine reaction; at that point the damage might have been caused by the resulting febrile seizure, and no claim can be made..If true, disgusting.

BTW, Hera, autism is absolutely caused by all the things you mentioned (fragile X, mito dysfunction, FAS, valproate, tubular sclerosis, etc.).

The question is not whether we know of some of the causes of autism: we do. According to one expert I interviewed, we can reliably say we know the cause of about 20% of diagnosed cases.

The question, though, is: of the 80% remaining, what percent can be attributed to an actual rise in incidence, and what percent can be attributed to new criteria, awareness, etc. – and can any signficant % be attributed to factors such as increased vaccinations, etc.

Lisa

Dear Livsparents,

Your points are well made. If the real increase were small or non-existent and, let’s say, diagnostic substitution / better detection were the real cause of the increase, then it might not bear the urgency that many parents (like me) feel it deserves.

But it seems to me that the consensus is shifting toward the view that the increase is real and substantial, and the genetic studies have found very very very little.

The consensus amongst the illuminatti had been, until recently, that there was no actual increase in the incidence of ASD. Thus, i think the paradigm shift we’re seeing now is significant, and suggests that, indeed, the increase is real.

It goes without saying — but is worth saying anyway — that genetics don’t follow an epidemic growth curve. Thus, if there is an “epidemic” of autism, it can only be explained by environmental factors. (including environmental factors interacting with genes).

The lack of genetic findings also necessarily increases the suspicion that environmental factors are causing the increase.

I trust my instincts on many things, and I usually turn out to be right. My instincts tell me that the increase in ASD is real. I also do not remember anyone who was autistic from my childhood, but I know numerous friends who have been affected with a child on the spectrum.

The point can certainly be debated, but I do not think language delays and social impairment evident in ASD would have gone unnoticed in the past. Not 1% of the population. Not 1:68 boys.

Did you know any kids when you were a kid that were autistic (whether diagnosed or not)? If so, was it 1% of the population or 1:68 boys?

Thanks for the thoughtful discussion. Kind regards,

-Bob

You look through your grade, middle and High school classes with your mind and it’s really hard to say. You see the faces and behaviors of some of the kids in grammar and middle school that were clearly different from you (and ashamedly, you remember picking on them). In high school, the kids are more accepting, but you can still probably remember a handful of kids that did well in school but could not work well with others.

If your somewhat an old-timer, and spent the majority of your school daze in the 70’s, almost without exception, the kids that were more ’severe’ in their issues were not allowed in your local school. The idea of warehousing students up and through the 70’s and even 80’s aren’t some fantasy, this was the structure of the school system. Unless these students met with a particularly dedicated educator who would (and could) spent literally hours a day working with a child, I envision autistics with severe communication, cognitive and behavioral issues as being left to their own devices: keep them clean; hopefully keep them happy; maybe just maybe a field trip once in a blue moon.
That all began to change, slowly in the 90’s with the introduction of more rights and requirements due to the AWDA and the concepts we are slowly taking for granted like IEP’s. We simply can’t judge what we remember of schools 30, 20 or even 10 years ago. We have progressed so far so fast over that time to help disability education.
Remember too that even with the ‘frightening’ numbers that are put out in education numbers, the % of autism to all special needs services is still ‘only’ less than 10% of the total. Sometimes I wonder if we on the inside are so close that it’s hard to get perspective.

Livsparents: I agree. Unless you had a specific reason to see people with even the mildest “disabilities,” you didn’t.

In NY, we had the BOCES program in our school for kids with mild issues (learning disabilities, for example). They were pretty much segregated, but we saw them. For all I know, there were some kids with HFA among them. But any kid with a significant issue was “somewhere else,” and I have no idea who they were, how many there were, or where they were.

We also had “typical” classmates with some issues that were pretty startling. I remember one sixth grader getting mad at a teacher and hurling a chair across the room. He was a “bad” boy… no idea what was really up with him! And I am confident that we had several aspies in our class.

Lisa

Here’s my answer…

My school district for K-12 was Salem Public Schools (Oregon). 1973-1986.

Salem Public Schools was on the very forefront of “mainstreaming” all kids. In fact TAG kids were in classes with some mild Down Syndrome kids. I was “TAG” early on (talented & gifted), but then we “mainstreamed” by third grade.

I can definitely see my classes with my “mind’s eye,” because I have always been very intuitive and a good observer of others. I also went to school with a lot of the same kids from K through 12 – there wasn’t as much turnover as there is in other places.

I remember a lot of kids with special needs. A couple with CP. A lot were slow learners and slow readers. Quite a few Down Syndrome kids. Even two deaf kids. (ok, “hearing impaired”). The only kids who were not “mainstreamed” during my time in Salem Public Schools were (1) blind kids went to the Oregon School for the Blind, and (2) “feeble minded” kids went to Fairview.

Fairview had the kids who were born microcephalic, or who had meningitis, etc. Its official charge was to educate the “feeble minded, idiotic, and epileptic.”

The only thing that even slightly makes sense is that about 25% of those with autism have epilepsy. Ok, where are the other 75%, who don’t have seizures?

In all of my time in school, i can honestly and confidently say that there was not one solitary kid with anything resembling Autism. …Not mild autism, not Kanners, not Aspergers. A couple of kids that I might have said, looking back, had Aspergers because they were “nerdy” … i recently saw at our 20th reunion (ok, a couple years ago now), and they are definitely NOT Aspergers, they are neurotypicals. They were just garden variety nerds.

So, yes, I can honestly say that I remember ZERO kids who had anything resembling Autism (or ASD) from my childhood. Not mild autism, not severe autism,

No friends, no classmates, no family members, no-nuthin!

That’s why i think the increase is real. The kids i see now who are “on the spectrum”, including my 4yo, are all *noticeable*. I would remember kids like this, looking back.

Bob, couple of questions/comments. When you say ‘cutting edge of integration’, by definition, you mean cutting edge in the 80’s. While I wouldn’t doubt it’s progressive status, I wonder how progressive they would be if the child was disruptive or even perceived as violent. Many of our kids react with extremes as you know, and I would suspect that even in a forward thinking school district, these children would have been segregated from the general school population. Even today, the debate is raging about whether schools should have these kids ‘endangering’ others in the school…teachers and students alike.

You also mentioned that you had a couple of Aspies in your class but probably not because you saw them at the reunion. How can you be sure what an aspie should look and behave like when they are adults? Indeed how can WE all know how ‘higher functioning’ autistics will progress over the years? The stats on some of these surveys have children ‘formerly’ on the spectrum atr something like 20 or 30%. Whether misdiagnosed or progressing beyond the diagnosis, they are fairly common.

Remember, that even at today’s ‘alarming’ rates, autism still only represents something like less than 5% of the total special needs population. They are not as easy to hide because of the stringent educational requirements that were not in place in 1986…

Again, I’m not saying that there is no possibility of a real increase, just that the majority of numbers can be easily be explained and that the premise of an ‘explosion’ of autism is denying some very large and obvious factors…

I don’t know if there is an epidemic or not, but there’s an interesting video on YOU TUBE that talks about this that was posted recently. Its called “autism spectrum seems out of control” and the other is something like ‘autism epidemic rooted in abuse of word autistic’