07-26-2007, 04:19 PM
I don’t know if you are all familiar with the aftermath of the story, but Ami Klin sent me a stream of seven angry and vaguely threatening e-mails denying that he made the comments that he did. Fortunately for me, those comments were made via e-mail. I sent them to him expecting a retraction but instead it spurred a flurry of more nastiness (to which I will not respond).
Against my better judgment I checked Klin’s Web site and noticed he referred to me and the story in which he was “dreadfully misquoted.” This is patently not true (see our e-mails below). This is a highly serious allegation to make against a reporter. (It’s equivalent to someone saying that he sexually harasses his patients, or a physician screws up a prescription.)
I know there are many Web sites and newsgroups for people with Asperger’s. The last thing I want to do is to get embroiled in any more nastiness, but I would be most grateful if any of you could post this letter there as well as the information that follows (or a summary of either is fine). It has already been sent to my editor and to Klin and Tsatsanis (no response from those two by the way).
I would very much like people to know that I did not misrepresent Yale or anyone else in the story. Thanks in advance.
-- Suzanne
Klin’s complaint:
"Klin says he has never known a parent with Asperger's."
I actually said to you that in the context of prototypical autism, not Asperger syndrome, which is view very broadly and differently by different people. This is a huge difference for those who know the field and for those that we work with. I understand the mistake. But if that's ok with you, all the e-mails received in regard to this quote, by parents who will be claiming that they have Asperger syndrome, I will forward to you.
Many thanks, and congratulations on the article. Ami Klin
MY RESPONSE:
The subject was definitely Asperger's and not prototypical autism, as you can see. The full exchange with several references to AS or Asperger's is below, but the relevant part is:
>> Bryna Siegel tells me that it is very rare for an Asperger's adult to
>> have children. Do you agree?
>>
>>
> I ACTUALLY DON'T KNOW OF ANYONE, SO YES, I WOULD AGREE WITH HER.
>
I really appreciate the time you and Kathy Tsatsanis spent with me. Any story on autism is highly controversial and I have never known it not to promote angry responses from clinicians and patients. I was meticulous in not misquoting you or Kathy Tsatsanis. The quotes are verbatim. I did have two questions following my conversation with Kathy and she clarified them.
Kathy Tsatsanis' quotes are indeed controversial. They are however 100 percent accurate. I double-checked before submitting them to my editor and made a subsequent check last night.
I am sorry if it is causing you embarrassment.
-- Suzanne Leigh
THIS IS THE CONTEXT OF KLIN’S COMMENT (PLS. NOTE THAT I NEVER SPOKE WITH KLIN). HIS COMMENTS IN CAPS.
>
>> Given that Asperger's affects one's ability to empathize - a trait
>> that seems key in raising children - is it possible for an Asperger's
>> parent to become nurturing and empathetic?
>>
>>
> I REALLY DON'T KNOW ANY FEMALE WITH ASK WHO IS A PARENT. I DO KNOW
> SEVERAL MALES WHOSE CONDITION IS SIMILAR TO THEIR AFFECTED CHILDREN.
> THESE INDIVIDUALS CAN BE DEDICATED AND LOVING PARENTS, BUT THE WAY
> THIS IS MANIFEST MAY BE DIFFERENT FROM WHAT YOU WOULD CONSIDER TO BE
> TYPICAL.
>
>> Bryna Siegel tells me that it is very rare for an Asperger's adult to
>> have children. Do you agree?
>>
>>
> I ACTUALLY DON'T KNOW OF ANYONE, SO YES, I WOULD AGREE WITH HER.
Suzanne wrote:
> Ami, Thank you for your responses (probably more helpful than you
> realize!). You refer to fathers of AS children "whose condition is
> similar," would these be people with PDD-NOS?
Not quite. These individuals might not have a diagnosable condition, but
they are, what geneticists call, a presentation consistent with the
"broader autism phenotype". In other words it is likely that autism is
not a discrete thing but a continuum, and that liabilities that need to
come in some form of confluence to give rise to the syndrome. These
individuals typically have social deficits or ineptitudes and a great
deal of rigidities.
best,
ami
Tsatsanis’ complaint
I wish I had a
> chance to see the quotations as I think in the edits, some important
> points are slightly
> altered and not accurate for AS. If there is a chance to make slight edits, I
> am really hoping they can be made. I put the words in caps.
> "They don't EASILY form connections. The social knowledge is lacking."
> (NOTE: the drive or interest may be there)
>
> Forming close friendships and dating ARE NOT EASILY ACHIEVED
> Asperger's adults' goals, colleague Tsatsanis says; Klin says he has
> never known a parent with Asperger's.
Notes taken during my conversation with Tsatsanis:
>
Kathy Tsatsanis
Asperger’s not the same as HFA. Typically Asperger’s people are more verbose, the speech is more pedantic. Most have average IQ but it’s possible to have low IQ with Asperger’s. Restrictive range of interests more marked in Asperger’s. “Circumscribed all-encompassing interests.” May be fascinated in obscure highly specific interests such as deep-fat fryers or sand. With HFA more mechanical, procedural.
Asperger’s is diagnosed later than autism, which should be diagnosed before 3.
Eric Frombonne (CHECK NAME) looked at epidemiological studies in autism.
Yale clinic only sees adults on a sporadic basis. Case-by-case.
What distinguishes Asperger’s from other disorders is it is a developmental disorder. In order to make diagnosis, you should look at medical records from childhood, videotape from childhood, school reports. To get a diagnosis, need to get to a clinic that specializes in developmental disorders.
By far most Asperger’s patients are children. One-sided idiosyncratic conversation, sometimes theatrical gestures, rigid thinking, inability to interpret gestures like looking at one’s watch, or regulating gaze.
Finnish study looked way diagnoses are made differently.
“People with Asperger’s typically don’t have insight into their behavior. Almost by definition an Asperger’s person would not form an intimate relationship, get married and have children. They don’t form connections – the desire, the drive and the social knowledge is lacking.”
Can be confused with bipolar or schizophrenia, but these are not social disabilities although they do affect behavior.
Can a person with Asperger’s learn to be neurotypical? They can try to learn, but it’s not “intrinsic or intuitive. It’s somewhat stilted, somewhat
Against my better judgment I checked Klin’s Web site and noticed he referred to me and the story in which he was “dreadfully misquoted.” This is patently not true (see our e-mails below). This is a highly serious allegation to make against a reporter. (It’s equivalent to someone saying that he sexually harasses his patients, or a physician screws up a prescription.)
I know there are many Web sites and newsgroups for people with Asperger’s. The last thing I want to do is to get embroiled in any more nastiness, but I would be most grateful if any of you could post this letter there as well as the information that follows (or a summary of either is fine). It has already been sent to my editor and to Klin and Tsatsanis (no response from those two by the way).
I would very much like people to know that I did not misrepresent Yale or anyone else in the story. Thanks in advance.
-- Suzanne
Klin’s complaint:
"Klin says he has never known a parent with Asperger's."
I actually said to you that in the context of prototypical autism, not Asperger syndrome, which is view very broadly and differently by different people. This is a huge difference for those who know the field and for those that we work with. I understand the mistake. But if that's ok with you, all the e-mails received in regard to this quote, by parents who will be claiming that they have Asperger syndrome, I will forward to you.
Many thanks, and congratulations on the article. Ami Klin
MY RESPONSE:
The subject was definitely Asperger's and not prototypical autism, as you can see. The full exchange with several references to AS or Asperger's is below, but the relevant part is:
>> Bryna Siegel tells me that it is very rare for an Asperger's adult to
>> have children. Do you agree?
>>
>>
> I ACTUALLY DON'T KNOW OF ANYONE, SO YES, I WOULD AGREE WITH HER.
>
I really appreciate the time you and Kathy Tsatsanis spent with me. Any story on autism is highly controversial and I have never known it not to promote angry responses from clinicians and patients. I was meticulous in not misquoting you or Kathy Tsatsanis. The quotes are verbatim. I did have two questions following my conversation with Kathy and she clarified them.
Kathy Tsatsanis' quotes are indeed controversial. They are however 100 percent accurate. I double-checked before submitting them to my editor and made a subsequent check last night.
I am sorry if it is causing you embarrassment.
-- Suzanne Leigh
THIS IS THE CONTEXT OF KLIN’S COMMENT (PLS. NOTE THAT I NEVER SPOKE WITH KLIN). HIS COMMENTS IN CAPS.
>
>> Given that Asperger's affects one's ability to empathize - a trait
>> that seems key in raising children - is it possible for an Asperger's
>> parent to become nurturing and empathetic?
>>
>>
> I REALLY DON'T KNOW ANY FEMALE WITH ASK WHO IS A PARENT. I DO KNOW
> SEVERAL MALES WHOSE CONDITION IS SIMILAR TO THEIR AFFECTED CHILDREN.
> THESE INDIVIDUALS CAN BE DEDICATED AND LOVING PARENTS, BUT THE WAY
> THIS IS MANIFEST MAY BE DIFFERENT FROM WHAT YOU WOULD CONSIDER TO BE
> TYPICAL.
>
>> Bryna Siegel tells me that it is very rare for an Asperger's adult to
>> have children. Do you agree?
>>
>>
> I ACTUALLY DON'T KNOW OF ANYONE, SO YES, I WOULD AGREE WITH HER.
Suzanne wrote:
> Ami, Thank you for your responses (probably more helpful than you
> realize!). You refer to fathers of AS children "whose condition is
> similar," would these be people with PDD-NOS?
Not quite. These individuals might not have a diagnosable condition, but
they are, what geneticists call, a presentation consistent with the
"broader autism phenotype". In other words it is likely that autism is
not a discrete thing but a continuum, and that liabilities that need to
come in some form of confluence to give rise to the syndrome. These
individuals typically have social deficits or ineptitudes and a great
deal of rigidities.
best,
ami
Tsatsanis’ complaint
I wish I had a
> chance to see the quotations as I think in the edits, some important
> points are slightly
> altered and not accurate for AS. If there is a chance to make slight edits, I
> am really hoping they can be made. I put the words in caps.
> "They don't EASILY form connections. The social knowledge is lacking."
> (NOTE: the drive or interest may be there)
>
> Forming close friendships and dating ARE NOT EASILY ACHIEVED
> Asperger's adults' goals, colleague Tsatsanis says; Klin says he has
> never known a parent with Asperger's.
Notes taken during my conversation with Tsatsanis:
>
Kathy Tsatsanis
Asperger’s not the same as HFA. Typically Asperger’s people are more verbose, the speech is more pedantic. Most have average IQ but it’s possible to have low IQ with Asperger’s. Restrictive range of interests more marked in Asperger’s. “Circumscribed all-encompassing interests.” May be fascinated in obscure highly specific interests such as deep-fat fryers or sand. With HFA more mechanical, procedural.
Asperger’s is diagnosed later than autism, which should be diagnosed before 3.
Eric Frombonne (CHECK NAME) looked at epidemiological studies in autism.
Yale clinic only sees adults on a sporadic basis. Case-by-case.
What distinguishes Asperger’s from other disorders is it is a developmental disorder. In order to make diagnosis, you should look at medical records from childhood, videotape from childhood, school reports. To get a diagnosis, need to get to a clinic that specializes in developmental disorders.
By far most Asperger’s patients are children. One-sided idiosyncratic conversation, sometimes theatrical gestures, rigid thinking, inability to interpret gestures like looking at one’s watch, or regulating gaze.
Finnish study looked way diagnoses are made differently.
“People with Asperger’s typically don’t have insight into their behavior. Almost by definition an Asperger’s person would not form an intimate relationship, get married and have children. They don’t form connections – the desire, the drive and the social knowledge is lacking.”
Can be confused with bipolar or schizophrenia, but these are not social disabilities although they do affect behavior.
Can a person with Asperger’s learn to be neurotypical? They can try to learn, but it’s not “intrinsic or intuitive. It’s somewhat stilted, somewhat