(this piece originally appeared in three parts in early May 2008)
Link Found Between Autism and Schizophrenia!
Yes folks, all that news that has been screaming down the information superhighway from this "ground-breaking" study by Dr. Julie Daniels, based on Swedish mental health records is 97 years old.
Dr. Eugen Bleuler said he is sorry he couldn't get it to you sooner, but the Internet wasn't around in 1911 and he has spent the past 69 years a bit preoccupied with other matters. Like being dead.
Here is some information taken from the standard press release which seems to have gone around the globe.
The study was most notable for its size, incorporating data on 1,237 children born in Sweden between 1977 and 2003 who had been diagnosed with autism before the age of 10, as well as about 31,000 controls...
...Both mothers and fathers with schizophrenia were roughly twice as likely to have a child with autism, the study found.
OK: here are some questions for you:
Question: Who was Dr. Eugen Bleuler?
Answer: He was a psychologist, a psychiatrist, a psychotherapist and researcher (and an overachiever, apparently). He also just happens to have been the dude who coined the term “Schizophrenia” and defined it in 1911
Question: How did Dr. Bleuler define schizophrena?
Answer: The simple version was using the The 4 “A”s, One of which was "Autism" (see more below)
Now raise hands: Who here thinks –in light of this Bleuler information -that it is a total co-incidence that parents of Autistic children may have been diagnosed as schizophrenic?
Are Autism and Schizophrenia the same disorder? No. they diverged. i.e. Autism (as we currently understand (or not) the term) was officially defined in the 1940s. Now it appears that maybe they are converging again to come full circle. Or are they?
I wondered about this, so I dug a little deeper.
Dr. Eugen Bleuler (not to be confused with Dr. Manfred Bleuler, his son) redefined as "schizophrenia" a condition that had previously been called "dementia praecox" using his four "A"s:
- Autism (i.e. preoccupation with internal stimuli)
- Inappropriate Affect (external manifestations of mood)
- Associational Disturbances (Illogical or fragmented thought processes)
- Ambivalence (simultaneous, contradictory thinking)
Now that is interesting, isn’t it?
You know, I always wondered how -with all the available Latin terms out there-
both Dr Kanner in the US and Dr Asperger in Vienna managed to simultaenously
coin the phrase "autism" for what are now known as "Kanners
Autism" (aka "Classic Autism" and various other names) and
Asperger's Syndrome. The Autism history books make it sound like some
kind of Divine Inspiration, but it makes more sense to me now to think that
they must both have been familiar with Dr Bleuler's work. They probably
learned about it in shrink school.
So yes “Autism” was -and probably is- considered a hallmark symptom of simple schizophrenia. There were other hallmark symptoms of schizophrenia too, like thought disturbances and hearing voices, which people with true Autism don't have.
But this is 2008, right? We have known for years
Autism and Schizophrenia are very different animals, yeah? One is a
developmental disorder, and the other is a "mental illness" which -with
modern imaging techniques is starting to look like it is actually a
degenerative condition of the brain (many brains of schizophrenics have a distinctive pattern on MRI). People
with Autism (generally) learn and progress, people with schizophrenia
So when I saw that study by Dr. Daniels, I thought maybe we have come full circle and she has made some kind of breakthrough to unify Bleuler’s work with Kanner’s and/or Asperger’s. Either that or it was totally backwards facing.
I mean like 60 years kind of backwards.
I decided to do a little digging to see if I could find out which it might be.
The study was an American analysis of Swedish data, which took children diagnosed with Autism between 1977 and 2003 and then looked at their parents for diagnoses of mental disorder Many of the parents –particular the mothers, had diagnoses of depression, “neuroses”, or personality disorders. However a statistically significant number of these parents –both genders- had been diagnosed as schizophrenic.
Now Dr. Daniels and her team are heralding this “discovery” as some kind of a huge breakthrough and an opportunity to prevent (how? By sterilizing all schizophrenics?) or treat Autism. However, knowing what I now know about the relationship -diagnostically speaking- between Autism and Schizophrenia, I wonder if there is a much more simple explanation? I wonder how many of the parents were misdiagnosed as schizophrenic when in fact they had Asperger’s Syndrome or some other high-function Autistic Spectrum disorder, -which was not an official diagnosis way back in the way-backs?
I know some people are reading this and shaking their heads, thinking that OSM has finally lost her last marble. But bear with me here. I did a quite bit of research in this and I don’t think it is as outlandish a theory as many might think. I’ll outline it for you, and you can make your own decision.
I figured the place to start was at the beginning and have a look into how these respective diagnoses originated as official diagnoses as opposed to theory and research. Of course, there have been Schizophrenia and Autism long before there was psychiatric medicine, but I think –especially as regards this particular study and these particular diagnoses- that the timing is key. As is the location. The study was preformed in the US. However, the patients, doctors and the diagnoses were all Swedish. Do the Swedes use the same diagnosing standards as the Americans? No. They use a different manual. (The ICD as opposed to the DSM in the States) That was accounted for in the study –kinda - although they did not take into account *when* the parents' diagnoses were made. Which I think is key. Also I wonder if there was a human factor at play here that may have been overlooked? Numbers are seldom purely random if humans are involved.
What do I mean by a human factor? Well, there are more than one. For a start let’s look at human doctors: A doctor goes to med school and learns whatever is in vogue to teach at the time. Later he (this is Europe 30/40 and more years ago. It is probably safe to assume the majority of shrinks were male) goes into practice and may or may not keep current with the research. He will get his updated diagnostic reference guide every 10 years and may or may not use it. Say a doctor practices for 40 years in his career, there will be at least 3 or four changes to the diagnostic manual in that time: What will a doctor gravitate towards? What he learned in school, or what is around now? I think many –being only human will go back to what they learned in school. I think this explains in part why these manuals take so long to evolve.
An old doctor diagnosing one of the older parents from earlier in the study who may have been diagnosed as a child, could conceivably have been applying 19th century psychiatry, which has now ended up in this 21st century study. Think about it
And the manuals do take a long time to evolve. “Dementia praecox” was debunked as a diagnosis in 1911 –replaced by schizophrenia. However the term still appears in the manuals as late as 1968! Asperger’s Syndrome was first defined in 1944, but it first appeared in the US DSM Manual in 1994. Fifty years later! So what of all those Aspies who were born in the States in the intervening 50 years? Food for thought, eh?
Indeed, what of the Auties and Aspies born in Sweden from the 1940s to the 1980s? We know they started to get identified in 1977 (whop-de-do!), but what of their parents?
Now –just for the record and to keep things simple: I am not disputing the Autism diagnoses of the children in the group study. Let’s assume they are sound. I am most curious about the diagnoses of the parents, because that is where I think the timing is most suspect.
The current diagnostic standard in use in Europe is the ICD-10. There have been ICDs 1 through 9 also. The manuals covering the period in which we are interested; if we assume the parents were between 20 and 40 when the kids were born, and could have been diagnosed anytime in their lifetimes, we are looking at a big window from 1937ish to the late 1980s or beyond (not taking the doctor's age and education into account).
So what tools were in use in Sweden in that timeframe?
The ICD-5 was introduced in 1939
The ICD-6 - 1949
The ICD-7 - 1958
The ICD-8A - 1968
The ICD-9 -1979 (probably not used for most of the parents)
The ICD-10 1999 (probably not used for the parents)
I found ICD numbers 7-10 online. I am kind of glad I couldn’t find #5 or #6, because I was kind of shocked by some of the stuff the later versions contained. Now, I am used to reading published papers and research on conditions that I find on the Internet. I am used to the reading the current thinking on each subject. What I did not expect (and this explains a lot, considering the situation in which I currently find myself) was for the *official diagnostic manual* to lag so far behind the research across the board. If the diagnoses were made by the book, then there are definitely some problems with Dr. Daniels study.
Schizophrenia was put in the book sometime in the early part of the last century (I don’t know exactly when). Autism didn’t make it in until the 1980s. Asperger’s was even farther behind that. And -back to my “human” point- we have no idea when the diagnosing doctors were trained.
So let’s take a little look at that data with new eyes: This time with a view to the historical thinking on mental health. You get a different picture.
I didn’t have access to the ICD 6, but I reckon
that it is safe to assume that it is even more outmoded than #7 and
#8. Autism was not defined as a separate disorder in either of them,
but simple schizophrenia is (remember the 4 “A”?).
Also interesting are some of the other treasures of outmoded medical thinking to be unearthed in these diagnostic manuals. Here are some lovelies taken from straight from the The ICD- 7, the official diagnostic guide in use in Europe during the 1960s.
325 Mental deficiency
325.3 Borderline intelligence
Congenital malformations (750-759)
So "Idiocy" and “Imbecility” were official diagnoses as recently as the 1968. Nice! So was "Malingering", BTW (795.1) and "nervousness" (790.0).
But Autism was not.
So any of our parents who may have been Autistic and were diagnosed -in the State hospitals, people- in Sweden did not have a place in the book. The closest fit for them was probably one of these:
300 Schizophrenic disorders (dementia praecox)
300.0 Simple type
300.1 Hebephrenic type
300.2 Catatonic type
300.3 Paranoid type
300.4 Acute schizophrenic reaction
300.5 Latent schizophrenic
300.6 Schizo-affective psychosis
300.7 Other and unspecified
OK so that maybe covers some of the older parents. But the manual was re-issued about every 10 years, right? Strides were made in the sixties and the benefits reaped in the 70’s right?
Well… yes... Some were.
However, the currently-no-longer-used term "Simple Schizophrenia” (4 “A”s) was still in use -inconveniently code-changed to 295.0. And no! Autism is not there. However "Involutional melancholia " (296.0) is! As is "Hysterical neurosis" (300.1) "Homosexuality" (302.0) (I swear I am not making this up!) and this lot of lovelies which I just put in wholesale (who -in the name of God can physically affect their endocrine system? Or their “organs of special sense” Wha…?)
305 Physical disorders of presumably psychogenic origin
- 305.0 Skin
- 305.1 Musculoskeletal
- 305.2 Respiratory
- 305.3 Cardiovascular
- 305.4 Hemic and lymphatic
- 305.5 Gastrointestinal
- 305.6 Genitourinary
- 305.7 Endocrine
- 305.8 Organs of special sense
- 305.9 Other
306 Special symptoms not elsewhere classified
- 306.0 Stammering and stuttering
- 306.1 Specific learning disturbance
- 306.2 Tics
- 306.3 Other psychomotor disorders
- 306.4 Specific disorders of sleep
- 306.5 Feeding disturbance
- 306.6 Enuresis
- 306.7 Encopresis
- 306.8 Cephalalgia
- 306.9 Other
"Malingering" still there in the 70s, BTW, now code
You know, all this would be funny, but I keep thinking of the real people and the real lives who were affected by this bullshit, and I just want to weep for them.
So where are we up to? Ah yes. We are coming into the 1980s. The parental diagnoses are probably tapering off, and the kids are being diagnosed. The ICD-9 was released in 1979. Maybe the ICD-9 will save us!
Good news! Infantile Autism (Kanner’s Autism) finally made it into the manual! It is 299.0 and it explicitly excludes schizophrenic syndrome of childhood (299.9)
Bad news: many of our parents would have been adults or teens in the 1980s (remember the first kids in the study were born in 1977) and would probably therefore already have diagnosis, or would not be considered for this diagnosis. What about Asperger’s syndrome? Is that in the ICD-9?
Actually, it is! …but it is not terribly obvious. It made it in as an AKA under the new category: “Other specified pervasive developmental disorders”:
ICD-9-CM Diagnosis 299.8
Other specified pervasive developmental disorders
· A childhood disorder predominately affecting boys and similar to autism (AUTISTIC DISORDER). It is characterized by severe, sustained, clinically significant impairment of social interaction, and restricted repetitive and stereotyped patterns of behavior. In contrast to autism, there are no clinically significant delays in language or cognitive development. (From DSM-IV)
· 299.8 is a non-specific code that cannot be used to specify a diagnosis (OSM Note: I took this from a 2008 version of the ICD-9 which is still in use in the US for billing and coding purposes. I think we can assume it was a valid code back in the 80s)
299.8 also known as:
· Asperger's disorder
· Atypical childhood psychosis
· Borderline psychosis of childhood
· simple stereotypes without psychotic disturbance (307.3)
And in the ICD-9 there are now six (6) different categories for simple
So, if you are a doctor in Sweden looking to diagnose an adult, and these were your choices, which might you pick? One of the schizophrenias? Yeah. Me too. It is and established diagnosis and six times more likely than this new, unknown shit, right? Or maybe you would go with a simpler option like neurosis, a personality disorder or depression.
I know some of you are saying that this is all pure and rather fantastical speculation on my part. So I read a few other papers.
I want to make a few things clear here: I am not claiming that every parent in this study who was diagnosed as schizophrenic was misdiagnosed. I don’t doubt that there could be a correlation between schizophrenia in parents and Autism in their children. However, I am saying that any correlation this study claims is probably not nearly as strong as it suggests. I suspect that it is highly probable given the timing of the study and the diagnostic tools available at the time, that at least some of the parents may in fact have Autistic Spectrum Disorders (ASDs) as opposed to true schizophrenia.
Here is the core problem as I see it: Dr Daniels is an epidemiologist. Nothing wrong with that at all. Here is MedicineNet’s definition of the same.
Epidemiologist: A person engaged in epidemiology (not confined to epidemics). Epidemiologists include people with an M.D., Ph.D., D.P.H. (Doctor of Public Health), M.P.H. (Master of Public Health), R.N., and a number of other degrees.
So I suppose Epidemiologists are kind of like the actuaries of the medical world. They are essentially number crunchers, not diagnosticians. They assess risk. They are much needed to track progression and potential distribution patterns of transmissible diseases such as flu and SARS in large populations. Their science works very well for this kind of information, because most of these diseases tracked are easily identifiable, and there are definite tests for them.
However applying the principles of epidemiology to something like the Swedish data is fraught with error potential. I know the control group was huge, but the subject group was tiny in epidemiological terms. Especially when you consider the timeframe and the fact that several of the diagnoses in question did not exist for a lot of the first generation in the study. I think this means that the subject data sample is more than likely tainted, and Dr Daniels, -not being a psychologist, a psychiatrist or a neurologist, is not qualified to determine which of the cases (sorry. I cannot bring myself to say “cohorts”) in each dataset are real, and which may have been misdiagnosed.
Therefore I think Dr Daniels –in attempting to look purely at numbers- overlooked some circumstance of history and climate in Sweden at the time, and failed to establish if the diagnoses which may have been made years ago would hold up today, given the advances made in psychiatry and the changes in thinking which have transpired in the intervening years.
So in my opinion, the whole study was built on a house of cards. I would love to see someone like Dr Fitzgerald (keep going, he appears a bit later) get a hold of it.
...and speaking of him: I promised you some backup for me theory, didn’t I?
Well, I wondered if my hypothesis could
be correct: i.e. that some people with Autism could have been
misdiagnosed as schizophrenic, especially some years ago, before Autism
made it onto the map –so to speak.
This is also an important limitation of the DSM system. Patients sharing the same diagnostic label do not necessarily have disturbances that share the same etiology nor would they necessarily respond to the same treatment. It is therefore critical to understand that the diagnostic terms and categories in the DSM represent only our current knowledge about how symptoms cluster together. We fully expect that, over the coming decades, the DSM system will be radically reorganized as the etiologies of mental disorders become better understood.
Recently, I found an interesting paper published by a couple of my countrymen (the aforementioned Dr. Fitzgerald)a few years ago. It is a great read about how Asperger’s syndrome can be mistaken or misdiagnosed, and outlines the potential misdiagnoses and the differentials. Here is a excerpt from that paper.
Schizophrenia is a disorder in which psychotic symptoms (delusions or hallucinations), thought disorder and so called 'negative symptoms' cause social and/or occupational dysfunction over time. Because individuals with Asperger syndrome have normal cognitive ability, restrictive behaviours and impairments in social interaction and communication can be misinterpreted as evidence of schizophrenia. People with Asperger syndrome have difficulty understanding the subtleties of social behaviour, but this should not be confused with evidence of psychotic disorder. In a clinical setting, asking individuals with Asperger syndrome whether they hear voices may induce a positive response, and they might concur that they hear voices "when people aren't there", but they may be refering to the voices of people in an adjacent room. Deficiencies in concrete thinking and in understanding how other minds think may cause patients with Asperger syndrome to misinterpret what is said to them, and they might as a result be labelled paranoid. Misinterpreting social contacts can also lead to inappropriate emotional responses, contributing to this impression. Persons with Asperger syndrome sometimes speak their thoughts out loud, which again can be misinterpreted by a psychiatrist.
That is interesting, isn’t it? There’s more..
Schizoid personality in childhood (DSM-IV)
Schizoid personality in childhood is defined by solitariness, lack of empathy, emotional detachment, increased sensitivity, at times paranoid ideation, and single-minded pursuit of special interests. All these features are seen in Asperger syndrome, and comorbid issues (depression or behaviour problems in particular) are likewise similar for both conditions. On the basis of evidence presented in Wolff's (1998) discussion of schizoid personality in childhood, we have concluded that there is significant overlap between schizoid personality in childhood and Asperger syndrome.
Schizotypal personality disorder
The DSM–IV diagnosis of schizotypal personality isorder depends on odd beliefs or magical thinking, bizarre fantasies or preoccupations, odd thinking and speech, odd, eccentric or peculiar behaviour and appearance, lack of close friends and social anxiety. All of these criteria can also occur in Asperger syndrome, and Wolff (1998) regards "Asperger syndrome and schizoid/schizotypal disorders as interchangeable terms that identify roughly the same group of children". The conditions do differ in at least three important respects. First, there appears to be an increased rate of develop-ment of schizophrenia in schizotypal personality disorder. Second, schizotypal personality disorder and schizophrenia co-occur in families and appear genetically related. Third, prospective research of children at high risk of schizophrenia (Erlenmeyer-Kimling et al, 2000) suggests that some individuals later diagnosed with schizotypal personality disorder developed without impairments in reciprocal social interaction and communication.
And here is some interesting information that it can and has happened, even here in the States:
"David Mandell, an epidemiologist at the University of Pennsylvania medical school, recently surveyed the adult patients in Norristown State Hospital in Eastern Pennsylvania, nearly all of whom are labeled schizophrenic, and found that about 20 percent of them meet the behavioral criteria for being autistic."
...and a link to the Full Article http://www.post-gazette.com/pg/08037/854963-114.stm
You know, The more I dig into this issue and the more I question it, the more it seems very likely that Julie Daniels study has grossly exaggerated many of the numbers and ratios regarding parental mental illness and autistic children. I believe history will show a more logical conclusion; that parents with an Autistic Spectrum Disorder (ASD) are more likely to have children with an Autistic Spectrum Disorder. I hope it will have a positive effect (negative for Dr. Daniels) of highlighting how misunderstood was Autism in the past, and how many ASD people –now adults- were misdiagnosed as mentally ill in the not-very-distant past.
Now, I gave Julie Daniels a chance. I read her full article on the Pediatrics Website (linked below), I figured somewhere in there she would give some kind of a nod to the fact that she was comparing contemporary apples to historical oranges. The only thing I found is this:
"Diagnostic practices in psychiatry continue to change, and case definitions become more narrow for both adult and childhood psychiatric disorders. Thus, it will be important to assess the relationships between parental psychiatric disorders and an offspring's risk of autism in other data with more detailed and complete ascertainment of psychiatric disorders for parents and offspring."
No shit, Sherlock.
Well Julie,. Perhaps you should have thought of that before you set a whole generation of parents –who have quite enough on their plates already, -thank you very much –back about 60 years.
Why not just be done with it bring back the term “Refrigerator Mother”?
I just thought of a new name for Dr. Daniel’s study. “Researcher vacuum-sealed researcher reinvents the refrigerator parent”.
Thanks, Julie Daniels. Thanks from the bottom of my arse.
Text of the study in Pediatrics magazine http://pediatrics.aappublications.org/cgi/content/full/121/5/e1357
Diagnosis and differential diagnosis of Asperger’s syndrome by Michael Fitzgerald and Aiden Corvin http://apt.rcpsych.org/cgi/content/full/7/4/310