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Back When Autism was A Rare, Life-Long, Institutionalized Disorder: 1991

Psych book p618 By Julie Obradovic

Cleaning the basement last weekend I came across my college psychology book. Simply named "Psychology", the second edition had a copyright of 1991 and was written by four of the leading professors at my alma mater, The University of Illinois at Urbana-Champaign. That year I took Psychology 101 with one of them.
As I always do whenever I find old medical books, I immediately look for Autism. I wonder what they had to say at the time the book was published and if they can shed any light on it. As I mentioned in a post not that long ago, I have a 700 page book published in 1994 by the American Academy of Pediatrics referred to as the authoritative guide on all things developmental, birth to age 5, that doesn't even have the word in it. Apparently, they didn't think Autism was an important developmental problem at the time, in spite of the fact they changed the criteria to supposedly make it more encompassing that very year. (That's what we're told anyway.)
Interestingly however, my psychology book published 3 years earlier did indeed mention Autism. That's the picture of page 618 (click image to enlarge) and this is what it says:
"Autistic disorder is rare, occurring in fewer than five children per ten thousand births, but with few exceptions (Lovaas, 1987), it leads to a life of marginal adjustment, often within an institution."
Ten years after the publication of these very words, ten years after my eyes read over them and highlighted them in yellow, my baby became 1 in 100. Not rare. Not life long. No institution needed.
Julie Obradovic is a Contributing Editor to Age of Autism.


Kaleena Martin

Autism can and is still a life long disability for some, my son to be exact. It is referred to as classic or severe autism now. That being said, I will NEVER "institutionalize" him or put him in a group home. He will remain with me until the day I die!


When my younger brother was diagnosed with Autism in 1987, my parents were told the best thing for our family was to institutionalize him. I remember playing with Play Mobiles in the corner of the psychologists office while my parents melted down. My parents were told Roland, my brother, would never be able to hold down a job or talk (even though he knew several words). Roland was 3; I was 6. My mom told me our family was very special because only 1 in 10,000 people was like him. My mom told me she was concerned she had done something wrong due to the prevailing "refrigerator mother" theory of the time. Thanks to their own background in psychology with an emphasis on behavior modification, an amazing regional center with an outstanding clinical social worker and their introduction to Lovaas, Roland was the first special needs student to be fully included with an aid in the school district. He graduated from "normal" high school and has a job. Roland still stems occasionally but only in private. He is able to carry on meaningful social interactions. The perception of Autism has changed by leaps and bounds in a relatively short time. Yet many profoundly Autistic adults, like Roland, have been left in the dust. It is appalling how few resources are available to them. Anyway an amazing paradigm shift has occurred in a short period of time,


could you please cite the reference (authors names) for the book you have talked about in this article? thank you


A bit late possibly, but just wanted to throw this all out there:

Aspie - (I'm another Aspie btw), I have Asperger's, and I wasn't diagnosed until I was 13 either (that was 10 years ago). Just as background. One of my parents is a teacher. They hadn't really ever come across autism until the past 11 years or so. They hadn't heard of it at all until the late-90s. Then suddenly - bang, it's everywhere.

I also have a book I found a few weeks ago in a second-hand shop; a 'Babysitter's Club' one called 'The Secret of Susan' - other children of the 80s and 90s will remember this series with a smile! The book is about an autistic girl, published in 1991, and includes such gems as 'I had never heard of autism', 'I had to search hard to find any information', etc, and talks about the girl having to be sent to a special school to deal with it because no teacher had ever heard of it.

However, with all that in mind, I would like to point you towards the work of doctors such as Sarah Lantz, Andy Wakefield, Libby Weaver, Julie Matthews, and others. Autism isn't a mental health issue (though obviously that covers it) - it's got its own unique pathology involving many systems of the body, particularly massive problems in the detoxification pathways and abnormalities in genes involved in detoxification, the gastrointestinal system, and the immune system.

This explains the sudden surge, when you take into account the numbers of toxic vaccines, psychotropic drugs, environmental pollutants, mercury fillings, and other problems. The average newborn baby these days has 200 toxins in its cord blood, including PCBs, teflon, DDT (banned 30 years ago), fragrances, flame retardants, pesticides, BPA, etc etc. That's an enormous toxic load for a tiny baby to deal with - and they haven't even ventured into the wide world yet.

Autism is an environmental illness; the degree to which the person is affected determines where on the spectrum they fall. That's why it's a spectrum and why it's so on the rise.

There's no point arguing about it and whether or not 'autism' and 'Aspergers' should be classed together (and anybody with Asperger's will tell you it may not be as challenging as autism, but it presents its own difficulties which are just as horrendous for the person involved, and a huge set of unseen physical issues too) - read up on the science; major breakthroughs have started taking place in recent years, the aetiology is more or less known, in a broad sense.

The more you're informed and know the syndrome, the better placed we all are to do something about it and help heal those already affected, and prevent others from having to deal with it. No matter where you are - Aspergers, autism, PDD-NOS - it all comes with its own challenges and problems for all involved. There's nothing nice about any of it.

Time we all up our game a bit.

- A passionate Aspie specialising in the treatment of ASDs.

Passing it forward

To Bendetta and Aspie,

I would have to write a book to go into full details, but suffice to say that I personally lost all my OCD-like behaviors (like having to check, recheck, and recheck again) (and had significant other health improvements, including finally becoming able to sleep through the night--something I wasn't able to do most of my adult life) after getting ALL my amalgam fillings removed by an IAOMT dentist and detoxing using the Cutler method.

Prior to this experience, I thought many of my behaviors (including difficult struggles with disorganization, my temper, and obsessive workaholism) and a tendency to get sick often were genetic in nature. I now wonder how different my life might have been had I discovered the real problem and solved it earlier--or better yet, if I had never been exposed to mercury.

One of my children (extremely verbally precocious and asocial) also had various OCD behaviors--including nonstop hand washing to the point that her hands were raw and bleeding at times--and also did things like having to count to three before doing things, sometimes had to clear her throat 20 times an hour, and bit her nails constantly, also no longer does any of these things. She also went from complete disorganization chaos to actually keeping her school papers in reasonable order and her room fairly clean. She also went from not being able to sleep through the night (ever) to much better sleep habits, though she still struggles at times with insomnia (and other issues). What has greatly helped her was also the Cutler mercury detox (which includes many supplements) along with Olive Leaf Extract.

Cutler hair elements testing method and porphyrin testing from two different labs indicated she was mercury toxic. I also tested as severely mercury toxic per the hair elements test and Cutler counting rules.

Based on my firsthand experiences, and what I have observed with my kids, I strongly suspect that many cases of Asperger's and autism (and other syndromes) are very likely mercury-poisoning or mercury-poisoning with complications. Also based on my firsthand experiences, I think Cutler's method of assessing mercury toxicity based on hair elements has validity, and his approach to mercury detox is effective. I suspect that what he has to say about the dangers of other mercury detox methods is also very likely correct.

FWIW--my experience indicates that several behaviors one might assume to be "genetic" tendencies are actually symptomatic of mercury toxicity AND can be changed by properly treating the toxicity.

I suspect the recent great increase in the number of kids we are seeing with problems reflects a great increase in the number of kids who are extremely mercury toxic and were exposed to mercury in very early development, versus the past when most kids had much less exposure to mercury and most who had toxic exposures received it mostly later in their development resulting in much less severe, though still problematic, health and behavior issues.

FYI here is a link to an excerpt from one of Cutler's books which describes symptoms of mercury toxicity:
You may find it of interest.


hmmmn, it's interesting. "It just doesn't add up" makes a good point about the docs noticing more autism. I mean, if de-institutionalization explains to some "experts" why we are simply noticing more kids with autism now in the school system, it DOESN'T explain why doctors would actually be saying this now.(especially docs who have been around for a while, like docs in their 50's and 60's). They would have seen these kids back in the day when they were institutionalized-definitely, because the docs would have actually rubber-stamped the diagnosis for admission (things were very much medical model back in the day). Also, the whole regressive autism thing is troubling. I don't think that was ever mentioned much in the past. Oh yeah, I know, the orac people will talk about "changelings."

It just doesn't add up

I have a couple of older versions of popular baby books. What to expect when you're expecting. What to Expect in the toddler years and a birth to 5 book from the American Academy of Pediatrics. Autism is not even mentioned. If you look in those books now. Autism gets a mention, a very big mention.

Who were the doctors caring for these babies, toddlers, young children?

Pediatricians seem just as surprised to see the number of autism cases in their practices.

When my son was young and we were getting evaluations and going to therapies it was a brand new experience for our pediatrician too. Which at the time didn't really resonate with me. Because after all, autism was so rare. Little did any of us now it would change very quickly. Me and my ped -We were on a learning curve together. How does one navigate the system?

It would be interesting to look at numbers from pediatric practices, how many kids with autism 20, 10, 5 years ago?

It just doesn't add up

I am not saying autism did not exist at all. It was rare. Your flimsy explanations don't support a once rare disorder becoming so common. Talk to long time teachers and superintendents- they are just as baffled as to where the autism is coming from. Why do we have such a problem with restraint and seclusion? What about all these kids and young adults wandering from home? Why don't the police know how to approach these people? Why all these problems? Even if they were called something else?
In my entire educational career from being a student to becoming a teacher I knew one boy that qualified as "aspergers". I never knew off anyone like my son. I never heard the word "autism" in my education classes. You can not rewrite my personal history. Now I know too many kids like my son. You can argue the numbers. Offer your explanations. It will not change the fact we are facing multiple concerning issues because we have now have so much autism. Autism was rare. My life experience tells me that.


Although we autistics may learn to perform behaviors, the suggestion that a gene-based selection of neurological features might be "not life-long" lacks scientific plausibility at this time.

I took a long time to get the three Ts, and the autistic population I've met suggests that a large proportion of autistic traits are intrinsically at worst benign. The social features aren't the first things I think about when I think of autism. We would do well to focus on the autistics capable of hyperlexia - it's not quite intelligence. Even the kids less functioning than myself (I'm not quite an aspie) could read whilst not talk.


It just doesn't add up: I admit there are many grey cases out there. That's why it's called a spectrum. Your friend may be on the extreme mild end.

As for not seeing children like your son, maybe these kids weren't put into mainstream schools as often as today. Maybe this is what caused you to see more of them as an educator.


She washed her hands untill they bleed. She observes everyone comeing out of the bathroom to see if they wash thier hands.

She would pack and repack her backpack when going to school. On the way to school when I drove her she would check and recheck that she had brought something. Even though she had checked for that same thing and even seen it several times in her baackpack.

She has strong interest.
High School it was muscial instruments and band - pep - marching - concert. She was on the clarinet, then oboe, the cymbals,and the snare drum.

First few years of college. I made the mistake of getting them a couple of gooslings. She read everything about them and hatched out more. The next thing I know I as was fencing off a large section of our pasture for domestic fowl. I was glad when that ended because those turkeys pooped stuff as big as cows, and they always wanted to perch on your head!

Then she became interested in caged birds. She got herself a cocketel and then - we ended up with three. She wanted a parrot and she read that it she should be there at it's hatching and it should be hand raised. She found a place that did that.
It is up on the balcony right now. I have hollered my son's name so much that the bird knows it and when it gets in a talking mood it will hollar his name too. I heard my son who never answers - answer it one day with desparate frustration. "What do you want!" He never answers me, but the parrot got him to answer.

Last summer and winter it was intricate paint by numbers. I could open a store and sell them - I have that many

This summer she strarted raising a flower garden and all the planning, reading placing the pots here and then moving them, reading more, going out with a ruler - I grabbed them up and planted them for her - enough already.

Right now she is into photos. Complete with expensive equipment, and camera. It is complicated and all I can say is thank goodness, maybe she will slow down and spend less money.

Her anger is often directed toward me. I never know if she is going to be the pleasant, sane thing or the evil one that bullies me to get her way.


She would pack all her stuff in her backpack in the morning and on the way to school she would check it and recheck it again and again.

In highschool she washed her hands so much they would bleed. She still watches everyone when they come out of the bathroom listening for the sink in the bathroom to assure herself that they have washed their hands. She makes a great nurse when it comes to washing her hands.

Last year she became interested in paint by numbers - some are very intricate - She bought - well she has filled up an entire huge shelves with them. I am thinking of opening up an art store, but I guess - well they are pretty, but they are paint by numbers.

Recently this summer at the time she was the most critically ill, she decided that she was going to grow herself a flower garden. She studied and shopped and shopped and studied on it.

I grabbed them up as she was trying to figure out where to place them, and space them and I started planting them! Enough already!

After she grew her flower garden she got interested in photos, and she has been working on her photos, she bought an expensive camera, lots of equipment, lots books to read about it, lots of stuff to help enhance it on the computer, talked about a dark room, thought on little else, has tons of photos of her flowers, and my zinnas, lots of butterflies on the flowers, and even a few humming birds.

In highschool, I gave them both a goosling to raise apiece - that started her raising domestic fowl. She was very good at it. She almost had a 100 percent hatch rate!!! No body is that good except a bantam hen! I fenced off a large area on our farm and it was quite crowded with all the fowl. Peafowl, turkeys, geese, guinea, and three types of bantam chickens. I was very glad when that intense interest ended. We still have a gander and he was so sad that I bought him 7 wives. We still have them, nothing else. I am sure glad those turkeys are gone too because they have poop as big as the cows and they constantly are trying to sit on my head.

She then became interested in caged birds; cockatels, and she wanted a parrot so very bad. She has one now - she read and read on it and found out that you should be around them as soon as they hatch and the best pet birds are the ones that are hand fed as soon as they are hatched. It sits on the balcony area of our home now, and since I call my son's name so much - it constantly hollers his name too. I heard it yelling his name one day and I heard my son yell back in complete frustration "What do you what, just what?" Poor son, he rarely answers when called, but the parrot has him answering!!!!

Feeling out of control. Well she sure did this past Christmas when she went into a mania. I have seen her in these manias in the past but did not know what to make of them. Out of control would be a good description.

Anger - You could see the hate steam off of her if I walked into the room while she was interested in a television show. No talking was allowed. - Actually there was a lot of unreasonable anger directed toward me. This summer I was taking her to a doctor's visit and she was telling me I was bulling her. I know she was very ill but enough already, I let her know the only one that has been bullied for years was me!

Thank God I only had two kids! I am a school teacher. the first year I taught school I had 54 students in my classroom and I swear - I could handle every last one of them on my worse day with a professional attitude and much better than I could ever handle my own two children on my best day!

Anne McElroy Dachel

Oh Julie,
Isn't this insane??
How can this be happening and no one is alarmed. No one is screaming for answers.

We're all so willing to accept that our kids are disabled.

In the early 90s, my son was first diagnosed with autism. They had to get a specialist from Minneapolis to come over to Chippewa Falls WI.
She told us autism was very rare. There probably wasn't another child with it in this town of 12,000.
She couldn't tell us anything except that our son probably would never live independently or hold down a job---pretty damning report after just seeing him for a half hour. He was seven at the time, yet she was willing to write him off for life.

Today, our schools here are filled with autistic kids. No one really knows anymore about autism than they did back in the 1990s. We all have managed to adjust to having kids everywhere with autism---no questions asked.
Anne Dachel


To Benedetta: Did your daughter have obsessive special interests and routines? Whenever I had a special interest, I often read about it all the time to the point of obsession. Did she ever have routines in which she felt out of control if the routine wasn't in place? I did. I wasn't very pleasant to be around if I missed my favorite show. I also had ritualistic behavior such as having to read 100 pages of a chapter book before I put it down. This and my social difficulties are explained by AS.

S. Perrin

I find it facinating that 10 years ago they mentioned one possible root as being abnormaly high opiates. There was just a study published about neonatal administration of thimerosal and the changes is mu-opioid receptors, that showed percisley the same thing. So they supected it ten years ago and never looked any further into that possability.


You said
" I was verbally precocious and was years ahead academically. I had trouble paying attention in class but was academically ahead because I learned at a much faster pace. I also had behavioral issues, was disorganized, and hated interacting with most people. These issues were quite problematic in a school setting."

When it comes to brain disorders it all sometimes gets all jumbled up and confussing.

My daughter was:
* could be anger lots of times, and did not want to be around people, or interact with them.
*My daughter was good acedemically - way ahead of her classmates, graduated top of her class.If she had to crack a book she acted like she was abused. I often wondered if she actually studied what she could have acomplished.
*she had trouble paying attention in school: Yes, and the five car wrecks in less than five year is pretty much an attention issue too.
*She was having trouble with behavior, well yes and no - because she was smart enough not to get caught!!! Really!! I heard her tell another student one time that she tore up the microwave in the teacher's lounge by putting alumnium foil in it. I was appalled!
She is bipolar!
Give it a read and see if it fits.

Concerned Mom

Cherry Sperlin Misra,
"Whatever be that case, it is clearly a disservice to the fully autistic kids to lump Aspergers kids with them. People unfamiliar with autism may see an Aspergers child and be told that he is "autistic" and they will think: "Hey that isnt so bad;What's the big deal?""

Thank you so much for making a point that can't be reiterated enough! There is a distinct difference between Asperger's and the kids with full-blown autism and for them to be lumped together in the same category is insane. Absolutely insane! And it does, indeed, do a disservice to the more severely affected. Neurodiversity advocates largely believe that the only difference between high-functioning and low-functioning is the ability to speak. Therefore, when they lump Asperger's together with lower-functioning autism, it causes many to think that autism 'really isn't that bad' and 'why would anyone want to cure an autistic child?' And with that belief there tends to come along with it a mindset that services (educational, medical, therapeutic, pharmaceutical, insurance) aren't as badly needed as parents may believe. If the neurodiversity crowd, which claims to speak for your children whether you want them to or not, continues to put forth nonsense that all autism is the same, and those with the power to do anything about services agrees, you can bet autism services will be cut from already strained budgets.

Lisa @ TACA

I have a terrible habit. I spend about $300 a month in books. I am an avid reader on a variety of topics.

My favorite thing to do is shop in used book stores. I love old dictionaries and medical text books.

I too have some of these books describing childhood schizophrenia then autism. It is striking to see the change in the text, diagnostics and yet no one seems very concerned. It boggles my minds no attention to the details people and move along.


When I went to school in the fifties, there were two kids in my class who were considered "slow." One of them looked somewhat different physically. There weren't any "weird" kids. Nobody had anything like ADHD. Nobody needed a diagnosis.

My daughter's elementary school has two classrooms dedicated to special needs kids and that's with most of the autistic kids having been integrated into the regular classrooms.

Cherry Sperlin Misra

Sorry, Aspie, my experience goes along with that of Mark Blaxill. In the last about 15 years of my school in New Delhi, I have had only a single Aspergers child, (Now he's doing well in college), but have had at least 8 or more fully autistic kids and many more who have some symptoms of autism, but who seem to improve with time. Outside of my school I have seen one single case of Aspergers and endless cases of full syndrome autism.
It is certainly true that cases of Aspergers can be completely missed. They could be diagnosed as ADD, but that still leaves the vast majority of fully autistic kids who have been apparent to anyone who teaches school, whether in the US or India
Whatever be that case, it is clearly a disservice to the fully autistic kids to lump Aspergers kids with them. People unfamiliar with autism may see an Aspergers child and be told that he is "autistic" and they will think: "Hey that isnt so bad;What's the big deal?" I personally believe that we will untimately find some basic physiological differences between the two, though they may be related and the cause may be the same.
You have to wonder- Why are the medical people, who love to make fine distinctions between similar disorders and fine distinctions within the same disorder, so keen suddenly to lump Aspergers kids with the autistic and call both autistic. You dont suppose that they want the numbers to look bigger than they really are do you?
Anyone, if Im wrong here please correct me.

It just doesn't add up

I was an education major back in the late 80's. Autism never came up in any of my classes. We never heard about it let alone learned anything about it. I never saw an autistic kid in any school I did any field work in. The university I attended now has an autism center with a very long waiting list. What happened?

Aspie, I think I went to school with a kid with aspergers syndrome and he probably was not diagnosed as such. But, today he has a successful career and seems pretty fulfilled on his life. I saw him at my class reunion.
Not saying that will be the outcome for all with aspergers, but his life looks pretty good. He has friends, he has a career he loves, he is active in local community theater.

Now on the flip side there are kids who can't do the 3 T's- toilet, tie shoes, & talk. That's the group my son with autism fits more into.

I'll give you some of the cases now counted as autistic are people like you. The extreme gray areas- socially akward "misfits" if you will.. But, I never knew a kid like my son growing up, nor did my neighbors, extended family members or my friends. And now I lnow lots of kids like my son. Where did they all come from?

Autism was rare. You seem to want to believe it's because people like you are now included in the numbers. I believe otherwise based on life experience.

Mark Blaxill

@ Aspie,
You are simply incorrect. There are numerous trend studies that provide distinction between the categories of the PDDs. At most, Asperger's is less than half of the total; formal estimates put Asperger's at less than 20% of total PDD diagnoses, possibly an underestimate. But no matter how you slice it (and please do this simple arithmetic yourself), one cannot explain a ten to one hundred fold increase in autism rates with the inclusion of Asperger's syndrome in the DSM IV.

As for evidence of diagnostic substitution, those who have looked for it have almost univerally not found it; those who have claimed to find it have either retracted or disavowed their claims. One grandiose study made only directional claims, but provided no evidence of symmetric, proportionate trends. In short, you have no idea what you're talking about.


this is the exact reason i decided unfortunately to follow the vaccine schedule. i had 1 in 10,000 in my head from my psychology classes and thought it was more likely my son would contract one of the diseases than have vaccine-induced autism. every day i wish i had kept current on these prevalent statistics, among other things...


The first kids harmed by DPT - on the television with a Congressional hearing (yeah back in the late 80's) they mentioned that the kids were turning out to have some what autistic like symptoms). Yeah, like atuism but not really autism!!!! That was what they said!

Well, heck - what was autistic like symptoms anyway???

There was that movie that came out called "Rainman" - nope, don't think that fit what I was seeing in my son, but then hard to know since he was a baby and Dustin Hoffman was a full grown man. Was my son going to turn out like that? I didn't think so.

Then there was Templin! Well, I looked her over really good, and listenfd to the way she talked. All I could say is that her speech was odd, but at least she was talking. She put herself into some type of tight fitting tube and pushed her way out of it, and said she was reborn, and made her better! Nope, that just sounded - crazy!

I did not even have the medical people telling me my son had a stroke, but I knew that was what it was. Frustrating trying to tell a doctor your child had a stroke and they look at you with bewilderment like - a baby is too young to have a stroke, that's for old people. But that was also the time, when a woman could not have a heart attack either, and it was not unheard of that a woman would go to the ER with chest pains, told she was fine, and then drop dead of a heart attack in the parking lot.

My son had a stroke, and he was not even getting the treatment that stroke victims get - you know phyically therapy or speech therapy or medicines that stroke victims were getting at the time like blood thinners.

The way it was put to everyone, autism people were just rewired different than other people. Nothing wrong with just being born different. Hay that is why the neurodivisity groups are so dangerous, isn't it? They are confusing and mudding the waters. Confusing people is exactly what the federal government, the vaccine compensation court, the vaccine manufactures wanted. They were even confusing the doctors and nurses too by the way. At least I hope the doctors at the time were just confused because if they were not then they were some new type of evil never seen on this earth ever before.

I don't think that my son's ped were confused though. I am pretty sure they are part of this new kind of evil. The only thing that might save them from Hell is that they truly believe that kids can outgrow everything.


Most austic adults in their early 20s weren't diagnosed in 1991. Someone like myself (people with Asperger's) wouldn't show up in the 1991 statistics. I wasn't diagnosed until adolescence and neither was friend of mine with AS. Most autistic children weren't diagnosed in 1991 so how could most be institutionalized? I was verbally precocious and was years ahead academically. I had trouble paying attention in class but was academically ahead because I learned at a much faster pace. I also had behavioral issues, was disorganized, and hated interacting with most people. These issues were quite problematic in a school setting.

However, I frequently shared my thoughts with adults, having conversations about history and politics. In elementary school, I was thought of as having ADHD, not an autism spectrum disorder. Psychiatric professionals believed the typical autistic was nonverbal, rocking back and forth, and in diapers far past the normal age. Keeping this in mind, the typical person with AS wouldn't have been diagnosed. We never "missed" all of these kids; we were simply diagnosed with other disorders. Asperger's wasn't even added to the DSM until 1994, and that makes up a large chunk of why more people are being diagnosed.

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