Do you tell your HF autistic child that they're autistic?

Some people say no, that the stigma attached to labels is more detrimental than any benefit of knowing. Others say it is good to know why you are so different, that it makes better sense to know you are on Spectrum than to believe you are a “loser” or “weirdo” like some insensititve people will call you. I have seen convincing arguments for both sides, but tend to lean towards telling the child when they are of an age to be able to understnad and accept whom they are.

For a good write up about this very topic, please read “A MArtian on the Playground” by Claire Sainsbury. It is avalable thru inter-library loan if you cannot find a copy to purchase outright.

How old is this child?

Well this is from the viewpoint of someone who is AS, but I would say yes. We are aware from a fairly young age that we are different, and it will make sense out of a lot of things. Funny that Dad quoted the Martian on the playground. A lot of kids use the analogy that they are aliens. (Ever wonder where des comes from? It is from the Jimmy Buffett song about Desdemona and her rocket ship.) There is a website called “oops wrong planet written by a person with hfa.

You might take a look at—http://www.udel.edu/bkirby/asperger/
This is a great page. There are some parent groups, and they might be able to give you some good guidance about when and how.

The stigma isn’t a big deal, kids will “label” your child something far worse. I went to school before such “labels” and I was given the following: mental, wierdo, etc. In contrast, Aspergers or autism is pretty tame!

—des

Des,
Can you give us more of your story? Maybe you’ve posted this before but I’m curious to hear your perspective. I work with alot of kids who fall on the autism spectrum and it’s always helpful to gain new perspectives.

KTJ,

It’s a really really long story! I am in my 50s so that makes it all the more long! Maybe I should do chapters.

Maybe you could ask me specific questions, that would help. I have made comments to posts but I really haven’t posted anything very specific about my background.

Ok so chapter 1:

Just for openers, I knew I was different in Kindergarten. I’ve looked thru family photo albums. There are pictures of me as a baby and as a toddler and it is as if somethign happened. As a baby I looked at the camera, and as a toddler I didn’t. There are pictures of me as school age and it is like they were saying “Look at the camera”. So I looked and it is like I just didn’t get it. Unlike some autistic kids, I was able to play imaginatively but didn’t know how to relate to other kids. I would mostly play by myself on the playground, however I did a little better in the neighborhood at home, where perhaps I was accepted a bit better. Also I think the neighborhood is easier. My mom used to arrange friends to come over that sort of thing. She also was a girl scout leader so I did that. You know they say there is a hidden curriculum, the one everyone knows but they don’t teach. I didn’t have a some behavior issues that some autistic kids have, it was just the social thing or lack there of.
I also had trouble in math but actually taught myself to read around 3-4. However, my comprehension wasn’t so good. Another thing was that I had some fixations. At school age it was dogs. My grandmother took me to the dog shows. I used to make these dog shows out of cardboard, etc in the playroom, and I’d play for hours just moving the dogs aroudn and rearranging them. I think it was comforting or something. Once I took out this very thick book on dogs and read it cover to cover. THe teacher was very impatient and wanted it back, I said I wasn’t finished and he told me that it was for “reference”— you weren’t supposed to really read it. :-)
(Funny thing I am back on dogs again. My dog Torie and I do agility and also herding. :-))

There is also a story of me in kindergarten. When I was four I lived in a very rural area and used to go to the little markets with my mom. At any rate they passed out outlines of cows and had us fill them in. Mine was just like a meat market chart. THis really worried the teacher and the principal who was studying child pych. I believe this is an example of literal thinking! :-) They gave me an outline, so I did an outline.

I hope you enjoyed chapter 1, but I really think you should ask specific questions lest I get carried away again.

—des

My son just turned 10. He is familiar with the label “tactile defensive” and “dyslexia.” Since he has always been tactile defensive (clothing issues) we’ve never had to think about telling him or not telling him. It’s just a given. Since he does have very obvious reading problems, I did finally discuss with him the word (or label) dyslexia with the explanation that it merely means his brain works a little differently, and therefore he must work much harder to learn how to read. I also used it to describe all the other difficulties and differences…and anything that didn’t fit in, well, that’s just individualtiy! Creative quirkiness!

I’ll try to take a look at the book “A Martian on the Playground.”

Oftentimes when I think about labeling, I think about the movie Forrest Gump. Of course, it’s not realistic, but the message that the mother (Sally Field) gives her son (that he can do anything he puts his mind to), is very inspiring. Life in itself will impose limits, so why put a cap on it?

Des, thank you for sharing your experience.

Laura in CA

Des, I am curious. Do you consider yourself Aspie or HFA? What makes the distinction in your opinion? (Remind me, are you a Yank, a Cannuck or a Limey?)

I am also curious about your comment about the baby pictures… Are you saying you feel you had a regression? These days that it quite common, accounting for perhaps 1/3 to 1/2 of the auties born after 1990, but being age 50 you were born at a time when it was extremely rare. Neither Kanner nor Asperger noted regression in the people they identified, and “childhood disintegration disorder” which was later incorporated into the Spectrum was once so rare that only researchers knew about it and practitioners could go their whole careers without seeing a single case.

Records from pre-1990 are very slim, but there are a couple of databases which are available, most notably Rimland who got immersed in autism in the early 60’s. His data clearly supports the growth in prevalance both of Spectrum, and more notably of regeressive autism. (Indeed, one of the most frustrating aspects of autism in terms of what the “official line” is to my mind is the rewriting and other editing the “experts” do as new information comes out. What they said last year is very often stricken from the public record as though they did not say that last year. Even some of the journals get rewritten (for one example, try to find Wakefield’s original publication online -it is gone)).

The most common event associated these days with regressive autism is the MMR, but you do not fit that model. Since you are too old to have received the MMR (it was not licensed until 1971 and not used in mass until the 1980’s) and also unlikely to have had the measles jab (it was not licensed until 1960 and mass use began in 1962) I wonder what factor could be attributed to your apparent regression?

>Des, I am curious. Do you consider yourself Aspie or HFA? What makes the distinction in your opinion?

Aspy. I don’t fit everything about that as well, perhaps have more “empathy” than is typical— of course I may have learned some. Also I was a bit more sensitive… I would fit more as an Aspy due to normal language and ADLs. I think my motor skills were a bit delayed and unusual, for example I never crawled on all fours. I went from creeping on my stomach to standing.

>I am also curious about your comment about the baby pictures… Are you saying you feel you had a regression? These days that it quite common, accounting for perhaps 1/3 to 1/2 of the auties born after 1990, but being age 50 you were born at a time when it was extremely rare.

I don’t know if it was regression. I was not immunized against anything as my parent’s were Christian Scientists. I have heard of this with other kids baby pictures vs somewhat older kids. Perhaps it accounts for stories of fairy changelings (normal babies were carried away and replaced by fairies who were said to be beautiful and untouched by humanity. (I don’t think that applies to me). It might be something of a baby just responding to a name or a noise but a somewhat older kid not doing that. I have asked my mom, but given her religion, it isn’t too likely that I would get any comments as to when she knew something was off. I don’t think she ever admitted anything til later.

>Neither Kanner nor Asperger noted regression in the people they identified, and “childhood disintegration disorder” which was later

Well I certainly would NOT fit that dx. I did not get language and lose it. My language skills were always normal. I have maybe unusual prosody.
But there was nothing unusual re the rate of development. In fact, my mother says people were surprised with sentence structure I had early on. I think this would be more typical Aspy.

>The most common event associated these days with regressive autism is the MMR, but you do not fit that model. I wonder what factor could be attributed to your apparent regression?

Prolly not really regression. It would be interesting re: photo study of autism and Aspy babies and children. I have seen this before, but all the ones I have seen were post 90s. But not any of them really fit the childhood disintegrative disorder. One of them in fact was hfa, he looked normal as a baby, did the not looking at the camera far off thing later, and then later he did learn to look at the camera as I did. However, his language was much delayed and he didn’t really talk til 4 (never has stopped since), he is now in some ways a much more typical teen than I ever was. MUCH trouble in school though. But earlier AFAIK he never lost language. In the Siege by Park, there are normal baby pix but her older pix are not (look quite a bit like mine in fact). This was pre-MMR. I don’t think she really regressed either but she was more classically autistic. From the description, she wouldn’t gain in language for a long time, she would get a word and drop another, but it wasn’t really regression it was more lack of progress.

For all we know this picture thing is a typical thing.
It’s an interesting thing, though.

—des

Oh yeah, and I’m a yankee.

—des

A YANKEE??????

Hmmm…. could it be that getting one of the diseases the vaccines are supposed to prevent could also cause some apparent regression? That would mean it wasn’t the extra stuff in the shots, but it’s an interesting shot in the dark. Baby photo research would be interesting.

If getting measles (for instance) were to cause autism, either regressive or Kanner’s, we would have had a long history of references to “hand-flapping, feeble-minded” victims, which we do not have. While it is true that medial records from before about the mid 1800’s is spotty at best, there are examples of people through history who have chronicled common medical and mental issues, including the Chinese, the Persians, the Greeks and the Romans. Additionally, we have the records kept by the Church and various parishes whcih give historical context to a great many conditions and syndromes. Full-blown autism is not among these records with the sole exception of the 3 instances of feral children.

I believe there is historical evidence of Asperger’s. The differences between autism and Asperger’s are enough that I believe that eventually we will make a clear distinction between the two, rather than placing them on a continuum. Time will tell whether this is true or not.

Not autism, but the subtle stuff Des described — I agree, there just seem to be fundamental differences between AS and autism.

Des — about your cow picture — reminds me of two family stories:

1948, my parents were living in a remote outpost on the Alaska Highway, my brother was a newborn (preemie, yet). They wanted to order in some meat but the shipper would only send in bulk, so the whole community took shares in a half of a steer. It arrived, and now how to split it? So, my mother had the old cookbook that had a diagram of where the cuts of meat came from, and she proceeded to carve it up. Outline illustrations are useful.

My kindergarten, mom went in for parent-teacher night around Easter. The teacher came up to her, laughing, and told her to pick out which bunny rabbit was mine. Mom looked, and went straight to the oddly speckled bunny. I well remember colouring it; could never keep the crayon in the lines and didn’t find it an interesting exercise anyway, so this day I just got fed up and speckled it all over with various colours. Creativity is a *good* thing. (I’m definitely not AS, some sort of dysgraphia and something that sort of resembles NLD)

Dad, *I* am the crazy canuck around here.

>I believe there is historical evidence of Asperger’s. The differences between autism and Asperger’s are enough that I believe that eventually we will make a clear distinction between the two, rather than placing them on a continuum. Time will tell whether this is true or not.[/quote]

Well maybe, but if this is so, then autism is unlike any other disability that exists. Take anything else and there is a spectrum of abilities and disabilities from very little (almost not disabled at all) to very severely affected. Take hearing impairment. There are people with very minor hearing losses all the way to total deafness. Cerebral palsy, there are such minor cases that they almost aren’t perceived as having any problem at all, all the way to very severe and hardly able to move. This goes for any disability that I can think of. To imagine that somehow autism is the rogue disability that doesn’t follow a spectrum pattern??

Of course there are true high functioning autistic folks. These are kids that at 4-5 would be indistinguishable from normal kids. My nephew was such a kid. Almost no speech until 4 (also had other typical characteristics such as self injury, self stim, etc) , but afterwards rapidly gained speech. Today you could not tell him from an AS kid, except for history. So we could say that these kids are on the spectrum and AS isn’t, but does that make sense if the outcomes might be similar?

—des

>Not autism, but the subtle stuff Des described — I agree, there just seem to be fundamental differences between AS and autism.[/quote]

Well I don’t know how subtle? It certainly was different than classic autism. I didn’t write things I consider too personal and that sort of thing so it kind fo limits my description a bit. AS kids are not like their peers, there isn’t anything so subtle about that, and they know it from a really early age (not just speaking for myself here). I would argue it might be harder for AS kids than some autistic kids at a certain point when you and all your peers know you are different. There is nothign so cruel as a bunch of grade school kids.

OTOH, the quality of life is MUCH better for most AS kids, so I’m not saying at all it isn’t better to be AS. I can be pretty much what I want to be, and you can’t say that about a classically autistic kid.

—des

Historical references to autism? What about fairy changlings and that sort of thing? When I was in my 20s I worked at a center for autistic adults which was one of the first ones in the country. Most of the people were in the their 20s as well, and many did not have dxes of autism— many had dxes of childhood schizophrenia or childhood psychosis. There were many children institutionalized early on as childhood schizophrenics and its likely a fair no. of them were autistic. At the other end of the spectrum„ if you believe in such things :-) kids were either not dxed at all, or dxed as borderline, personality disorders, avoidant disorders etc.

—des

Des: Well maybe, but if this is so, then autism is unlike any other disability that exists. Take anything else and there is a spectrum of abilities and disabilities from very little (almost not disabled at all) to very severely affected. Take hearing impairment. There are people with very minor hearing losses all the way to total deafness. Cerebral palsy, there are such minor cases that they almost aren’t perceived as having any problem at all, all the way to very severe and hardly able to move. This goes for any disability that I can think of. To imagine that somehow autism is the rogue disability that doesn’t follow a spectrum pattern??

I didn’t say that I did not think autism follows a bell curve in severity. I am just not convinced that Asperger’s is at the high end of the autism spectrum, I think it will be found to have its own bell curve or spectrum.

Autism is not a completely unique condition; it shares aspects with a number of unrelated conditions in various degrees of comorbidy and crossover. I think however, that there are enough differences between Asperger’s and autism both in behavior as well as bio-medical underpinnings that eventually we will see them as somewhat similar but distinct syndromes.

Of course I also believe that once we define the different etiologies of autism we will break it down as well into seperate categories as well. An example of this might be seen in MR. Both Down’s and Fragile X lead to MR, but we clearly make a distinction between the two, we do not view them as part of the same spectrum of MR because they are obviously two distinct (genetic) disorders.

When you talk about educational outcomes, distinctions like this are often less than important, but from a medical/scientific standpoint the differences are enough that we do not lump them together into a blended mass. When you speak of prevention of disorders it becomes even more important. Should some autism turn out to be a strict genetic thing, we will need to screen newborns like we do for other genetic problems (PKU for instance) so intervention can be scheduled and attempted at the earliest moment for maximum potential remediation. We will need to also better define the odds of repeating the event with siblings and other family members so we may counsel them about having children. (I will never advocate abortion for problems like this, but prevention is a valid consideration, and not all parents are up to the task of raising a typical child, let alone a child with the inherrant challenges of autism.)

And if some autism is determined to be triggered (whether because of genetic predisposition or frailty or not), we need to fully understand and honestly address the situation so we can reduce as close to zero the likelihood of exposing vulnerable children to the triggers. Period. Some of the theoretical triggers for autism should be removed completely regardless of the actual tie-in to autism for the protection of all of us (of course I am thinking specifically of the medical exposure to mercury and aluminum, two neuro-toxic substances which have zero medicinal value, especially in this day and age). Others are less clear, and removal carte blanche may be impossible, but steps should and eventually could be taken to protect vulnerable individuals from them. In order to effect that we will need to subdivide populations into proper classifications so we can determine exactly whom is at risk for what.

To some people this may be an exercise in academics which has little direct bearing upon their own situation. I know my boy could give a ratsass how we classify him. From my pov however, it makes a world of difference finding true definitions of his condition, because it would take a tremendous amount of guess-work out of finding remediation. My job as his parent is to help him get to self-sufficiency so he can survive in this chaotic, often unfriendly world. I am 41, he is 10. To date we have yanked him from about the 30th percentile of the Spectrum to probably just over the 50th. I figure I have about 30 years left to work on gaining more ground before I will be forced to turn him over to someone else’s care.

At the rate science is currently working on this problem, with industry-led misdirection in all aspects of life and the “experts” and “professionals” seeming willingness to spin their wheels and cool their heels I am not sure I can count on anyone’s true help in this besides other parents of autistic children. (Of course if removal of thimerosal from vaccinations does not turn the rising incidence around and begin a reduction of prevalance I will soon have a monstrously large body of potential allies in my struggle from which to draw information, ideas and support. Not really a comforting thought, wouldn’t you say?)

[quote=”des”]Historical references to autism? What about fairy changlings and that sort of thing? When I was in my 20s I worked at a center for autistic adults which was one of the first ones in the country. Most of the people were in the their 20s as well, and many did not have dxes of autism— many had dxes of childhood schizophrenia or childhood psychosis. There were many children institutionalized early on as childhood schizophrenics and its likely a fair no. of them were autistic. At the other end of the spectrum„ if you believe in such things :-) kids were either not dxed at all, or dxed as borderline, personality disorders, avoidant disorders etc.

—des[/quote]

No, I do not believe that the changelings you mention are specific or indirect references to autism. The changelings are more in the realm of the super-natural, not so diferent from lyncathropy. The feral children however are almost post-card perfect descriptions of autism, and we have 3 such historical references from the 500 year period prior to Leo’s and Hans’ work. To my mind, I believe that the almost universally prevalent sterotypical behavior we call stimming and also the relatively frequent episodes of sibs would be the items which would leap off of any page. It is really hard to think about the child with autism without noticing his stims and repetitive behaviors.

When you were in your 20’s was not long enough ago for us to call it a “historical reference” (regardless how old you may feel at times), especially when we are talking about using the 1930’s and 40’s as the baseline for looking back. Leo clearly states in his paper that he had identified a previously unknown condition in the 11 children he studied. That has never been successfully refuted to date by anything other than speculation, and it would have been challenged at the time if anyone could show where the (then) estimated 1 in 10,000 children who were born or developed autism were indeed already among us and had been for as long as other defined conditions, such as blindness, deafness, MR or the various mental illnesses. We have clear historical refernces to depression, schizophrenia, dementia, Down’s, etc., but no mentions of children with the signature hand-flapping mutism (or echolalia) that is so common with autistic kids that we use them as diagnostic tools.

If autism in Kanner’s time were as prevalant as it is now, it would not have been unknown. Mislabeled quite possibly. But kids like my boy would have been clearly identified as having something wrong, they would have been filling institutions for the feeble-minded, and the public would have been up in arms about all these difficult kids. There simply were not nearly enough people being housed in institution to explain away today’s crop of auties as being misidentified 100 years ago. We would have to have had literally millions of people being housed in homes for the feeble-minded for this to be the case, in addition to all the other persons with all the other conditions that led to being institutionalized, and that is not a historical fact in the US, in Canada or in the UK. Four studies conducted in the 80’s and 90’s including one which encompassed the entire state of ND have failed to find the misdiagnosed adults in institutions that would be necessary to explain away the rise in prevalance as diagnostic substitution.

We clearly have a couple of scenarios…

1) autism is completely new to the 20th century, either because something has caused our genes to shift or decay in a specific manner or a specifc set of toxins were introduced to our lives.

2) autism is born out of a much milder condition because of some factor new to the last centruy.

3) autism is evolved out of some milder condition due to natural selection.

It is almost certain that some genetics plays a part in autism; otherwise we would not see the higher familial concordance in incidence (4 in 1,000 for general population late 90’s odds, 4 in 100 familial concordance late 90’s odds) However, it is also impossible for us to have had the growth in prevalance in autism with our understanding of mendelian genetics. It takes about 100 years for a gene to double in incidence in the human herd. Autism has gone from 1 in 10,000 in the 40’s to 4 in 1,000 in the 90’s, a climb of 3900% in 50 years.

Because autism is not thought to be the result of a single gene, but rather a combination of several genes, this becomes geometrically higher.

The twins concordance studies support both a genetic tie-in as well as a post-natal environmental trigger. the concordance for identical twins is only 60%, meaning 2 out of 5 sets of identical twins identified had only one of the twins on Spectrum. This is especially puzzling because so many sets of identical twins lead almost perfectly identical lives when they are babies. Why one and not the other is the million dollar question, and much closer study of twins may be our best bet at pinning down both the genes involved as well as the triggers needed to cause autism to happen.

I know what I believe the trigger is, and we should know within a couple years whether the “circumstantial” evidence to date continues to support my belief. If I am right, we have already turned the corner and the only thing left is the clean-up work and making sure the responsible parties carry their share of the burden as well as honestly taking responsibility for their actions. 4 years ago, when the FDA “moratorium” was enacted I predicted it would be 2008 before we clearly had our answer. For the first time in 60 consecutive quarters the CA Regional Centers have shown a decline in intake of auties, right on schedule. If I am correct in my reasoning, we shall see them continue to decline until we reach a level that existed prior to the early 80’. There will be no lying about the facts after that.

>[I didn’t say that I did not think autism follows a bell curve in severity. I am just not convinced that Asperger’s is at the high end of the autism spectrum, I think it will be found to have its own bell curve or spectrum.

Yes, but if it were like many other disabilities, then wouldn’t it have a spectrum from barely disabled to profound (like hearing loss, etc.)??
Aspergers also does have a bell curve of severity, for example there are people with less severe cases (prolly like myself) and more severe, but it isn’t a very complete spectrum either.

>crossover. I think however, that there are enough differences between Asperger’s and autism both in behavior as well as bio-medical underpinnings that eventually we will see them as somewhat similar but distinct syndromes.

There is a LOT of debate about that!!!

>example of this might be seen in MR. Both Down’s and Fragile X lead to MR, but we clearly make a distinction between the two, we do not view them as part of the same spectrum of MR because they are obviously two distinct (genetic) disorders.

Oh it is possible that classical autism is a separate thing like Down’s or Fragile X, but I don’t recall that there is a gene linking it or anything like that. I’d think they would have found it by now.

>When you talk about educational outcomes, distinctions like this are often less than important, but from a medical/scientific standpoint the differences are enough that we do not lump them together into a blended mass.

Well I am talking about a kid who is indistinguishable from a classically autistic kid at 4, but at 10 is indistinguishable from an AS kid. This is without any particular educational intervention like ABA or anything else. I know of quite a few of these kids, so I don’t think this is so uncommon. There is a big burst of development at 5-6. There are also fairly typical AS kids at 4, they have developed language and have fairly normal ADLs, but for whatever reason they don’t come out like a typical AS kid at 10. They seem much lower functioning. And I know some of these as well. So I don’t really know what to make of the spectrum, perhaps there are subcatagories as you describe and these have different etiologies and so forth. What we think of as Kanner autism may actually be several separate things, and what we think of as AS may also be for all I know.

So I am not talking so much of educational outcomes, as no education that I know of was involved, but more developmental outcomes.

>To some people this may be an exercise in academics which has little direct bearing upon their own situation. I know my boy could give a ratsass how we classify him.

Of course that wasn’t the question, do you tell a classically autistic kid?? Obviously it wouldn’t matter much.

>autistic children. (Of course if removal of thimerosal from vaccinations does not turn the rising incidence around and begin a reduction of prevalance I will soon have a monstrously large body of potential allies in my struggle from which to draw information, ideas and support. Not really a comforting thought, wouldn’t you say?)

No.

—des

>No, I do not believe that the changelings you mention are specific or indirect references to autism. The changelings are more in the realm of the super-natural, not so diferent from lyncathropy.

Well they could be, or it is like some folklore that has a basis in reality.
I think I recall various Discovery programs that took “folklore” conditions (not that one per se) and figured out where they could have come from.

> The feral children however are almost post-card perfect descriptions of autism,

For sure, some of the feral children were autistic.

When you were in your 20’s was not long enough ago for us to call it a “historical reference” (regardless how old you may feel at times), especially when we are talking about using the 1930’s and 40’s as the baseline for looking back.

Well I don’t feel so old (usually). Still some of the adults I worked with in institutions for mentally retarded seemed autistic to me (in retrospect). I am pretty sure they were born pre: 1930. I worked in a day center for elderly mr people.

> onditions, such as blindness, deafness, MR or the various mental illnesses. We have clear historical refernces to depression, schizophrenia, dementia, Down’s, etc., but no mentions of children with the signature hand-flapping mutism (or echolalia) that is so common with autistic kids that we use them as diagnostic tools.

When was childhood schizophrenia defined? As I think some of the kids with that were likely autistic. (The young adults that had been dxed as childhood schizophrenic looked pretty identical to adults with autism. I never understood what the difference was. OTOH, there is supposedly a definition. There should be hallucinations. How would they know when the kids were not verbal?)

> But kids like my boy would have been clearly identified as having something wrong, they would have been filling institutions for the feeble-minded, and the public would have been up in arms about all these difficult kids.

I don’t know why they would have been up in arms. Did people know about these kids, even the mentally retarded ones?? Willowbrook existed for awhile and no one knew anything about it til Geraldo Rivera did his expose (yes he did do something worthy in his lifetime).
I don’t know that it woudl make up for the nos. But you give the kids barbituates, etc. and lock them up— hey don’t normal infants and children start stimming if lacking in stimulation? Maybe it wasn’t so big a deal? you have large institutions with retarded or otherwise impaired children and also some kids from very impoverished backgrounds and they all start acting similarly if not given stimulation. I just don’t think it is a 20th century phenomena.

OTOH, is there an increase? I believe that’s another question.

—des

>> But kids like my boy would have been clearly identified as having something wrong, they would have been filling institutions for the feeble-minded, and the public would have been up in arms about all these difficult kids.

>I don’t know why they would have been up in arms. Did people know about these kids, even the mentally retarded ones?? Willowbrook existed for awhile and no one knew anything about it til Geraldo Rivera did his expose (yes he did do something worthy in his lifetime).

If 200 years ago 4 out of every 1,000 children born had been autistic (feeble-minded to the point of needing lifetime care, non-communicative but being physically fit enough to present the challenge that these children have, flapping arms, insisting on sameness, repeating verbal stims nearly endlessly, you bet people would have been talking about it just like the parents of the late 80’s began to and the parents of the mid 90’s did in large numbers.

There would have been numerous references in a myriad of sources of these children who needed to be locked in a backroom for their own safety. We cannot find anything even remotely resembling this in any source.

The sole exceptions to this are the three documented cases of feral children, 2 from Europe and 1 from India.

>I don’t know that it woudl make up for the nos. But you give the kids barbituates, etc. and lock them up— hey don’t normal infants and children start stimming if lacking in stimulation? Maybe it wasn’t so big a deal? you have large institutions with retarded or otherwise impaired children and also some kids from very impoverished backgrounds and they all start acting similarly if not given stimulation. I just don’t think it is a 20th century phenomena.

When were barbituates invented? Prior to the 20th century we did not have the chemical straightjackets that were so used and abused from the 50’s to the present day. Institutions that housed people of this sort were simply locked in cells. We would have records which described people that could clearly be seen as autistic. There simply isn’t any documentation to support the idea that autism has always been here.

> OTOH, is there an increase? I believe that’s another question

Few people doubt that there has indeed been an increase. Even Wing who questioned the apparent increase and and Fombonne who long disputed it have both accepted that there most definately has been a true increase in incidence over the last 30 years.

The CA Regional Centers have kept very good records using professionally accurate diagnosies since 1971. When M.I.N.D. collated the data not by year of patient intake (which would easily allow for discrepancies) but rather by birth cohorts they clearly showed that there has been a significant rise in prevalance over the last 30 years. M.I.N.D, also refuted diagnostic substitution, migration and expanded criteria as being factors in this dataset. There folow up report of 2002 was what made Fombonne finally change his tune.

In fact, the only “experts” these days who seem to continue using the failed arguments of diagnostic substitution and expanded criteria are those people who stand to lose the most should some or all of autism turn out to be triggered by some environmental toxin that is nearly universal in its exposure to children.

Things that make you go “hmmmm”…

Dad and des — sorry I don’t remember where I read this, but in fact “childhood schizophrenia” was a name used to describe what is now called autism. It was recognized to be different from what is called schizophrenia in adults, but since there was a somewhat comparable withdrawal from social contact, this is the name that someone came up with. I read books written in the 1960’s and 1970’s that used this term and the description of one child did match the description of autism.
This has nothing to do with the frequency issue; it was still a rare diagnosis.

Yeah Virginia, I haven’t run into that one lately at all. They supposedly had hallucinations but it was different than the adult version. It was a rare dx though. I’m sure the nos. don’t make up the difference between now and then. I don’t imagine the nos. make up the difference by with msdx or anything else— though at one time it was quite hard to get a dx of autism (the people at the center I worked at often had 3-4 different dxes). Still I don’t think the nos jive. The evidence indicates an increase.

I don’t know about the increase in AS and hfa though. That could be just using different dxes or even using one at all. But Dad I didn’t get the idea you were talkign about this part of the spectrum (if it is part of it) really, am i correct? You’re talking more abotu the more severe end of the spectrum?

—des

As I understand the term, yes, it was applied to the severe end of the spectrum. I am just reporting from reading here.

Assuming that autism is not soley the product of Mendellian genetics AND assuming that there is a true increase in prevalance AND assuming that autism follows a curve of severity (whether bell shaped or not) then I would think that all levels of functioning would be increasing.

If autism at the core is genetic and only the severity depends upon environmental insults, then we should see LFA increasing and HFA decreasing as the exposure to offending toxin(s) are increased.

If we allow that the 2 studies conducted in the 70’s (which came up with 1-2 per 10,000 as prevalence) and the 4 studies in the 90’s (which came up with 34-40 per 10,000) are accurate for the prevalance of core autism in their time period, autism cannot be the product of Mendellian genetics.
Asperger’s is going to be very difficult to accurately assess because those at the high end will blend into typicals with only mild mannerisms/anxiety issues/etc. to go by. If we can locate a genetic or other metabolic test that has a high degree of confidence we could begin screening people who would fit a loose profile (assuming ethics and privacy are not issues in the process.)

I am not sure that we wlll ever get the complete true picture due to the extraordinary cost associated with conducting large population studies, which would then have to be extrapolated anyway. And the benefits of knowing may not outway the costs regardless, unless you count science for the sake of as being utmost in importance.

The critics of increase in prevalance are using the fuzzy nature of identifying those at the high-end as their main argument (expanded diagnostic criteria). What they refuse to discuss is that the studies on prevalance to date have all very clearly distinguished between core autism (which was all that was counted prior to the 90’s) and HFA/AS/PDD, which were listed as a seperate set of numbers in the later studies.

So to answer your question the long way, because it is impossible at this point to make more than a semi-educated guess about the prevalance of HFA/AS, yes, I tend to stick to discussing core autism when debating the increase in autism. I am of the belief that Aspies and HFA’s, if given proper consideration for their differences, can niche in society very nicely, and can contribute in many ways for the better of us all. Children with LFA on the otherhand are a very serious issue and we as a society should address their needs at the earliest moment and with all needed resources because to fail to do so not only condemns many (most? all?) of them to a very dismal future, but presents a growing cost to society for expensive lifetime care. Everyone we can recover into the HFA slot represents a potential savinge of over $3M of taxpayer funds, and allows them to find if they too can niche and begin contributing back to the society as a whole.

Sorry if this or something similar has been said already in this thread… but, 30 years ago and way, way back beyond then, “locking” the mentally retarded in a “backroom” was quite prevalent indeed, but in so many cases, who knows how many, it was hidden from the neighbors, and even the relatives. Most parents didn’t even take them to doctors, for God’s sake. It was a source of embarrassment and shame. I’m sorry, but this did happen, and it cannot be denied, to attempt to prove the sudden increase in autism in our generation. “Mentally retarded” was a catch-all dx for a plethora of disorders doctors and parents alike just didn’t understand, and autism was one of them.