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10/08/07
Tourette Syndrome—Now What?
Raising awareness about the full spectrum of Tourette's disorder, with support
and accurate information based on the latest research. TSNW •
TSNowWhat •
TouretteNowWhat •
Tourette Syndrome Now What?
Tourette's
Syndrome Message Board and Blog!
(An online Tourette syndrome support
group where you can meet adults, families and people with Tourette's Syndrome,
keep up with the latest research, learn how to cope with Tourette's, and post
your questions about Tourette's.)
Click on the links below for recent
updates, latest research on Tourette's, and current Tourette's
information
In May of 2001, Dr. Laura became the most infamous example of
myth, misinformation, intolerance and misunderstanding of the symptoms of
Tourette syndrome and people with Tourette's, when she broadcasted wildly
inaccurate information about the condition. Presented with the opportunity
to correct the misinformation on air a few days later, and having had time to
research the condition, she disseminated even more misinformation about
Tourette's syndrome.
November 10,
2004 update.
Dr. Laura herself never formally apologized for the misinformation
she disseminated about Tourette's on her May, 2001 shows, or
fully retracted her inaccurate information about Tourette's Syndrome.
Listeners recorded these
transcripts of the shows from the audio links on the "Dr. Laura" website.
What she actually said is easily verified. In a recent e-mail, her attempt to rewrite history
has become part of her history of intolerance, double
standards, and
moral and spiritual confusion.
The
semi-apology (which came allegedly via an unverified spokesperson, but never publicly from her) didn't
seem to have her support, rather gave the impression that it was
orchestrated by her producers for publicity reasons. The recent
e-mail, allegedly authored by Dr Laura, appears to confirm that
suspicion. The author states, "As usual with 'special interest
groups,' I am misrepresented ..." and then seems to attempt to
rewrite history by stating that her response was "simply point(ing) out personal responsibility, compassion and respect for the realities of other people."
Once again, rather than following her own advice (accepting personal
responsibility for her mistaken information about Tourette's or apologizing
directly for it), she assumes the "victim" role, stating, "That this simple, common sense, compassionate concept got twisted the ugly way it did....is the main problem with our society today."November
10, 2004 e-mail allegedly authored by Laura Schlessinger,
It seems that, many years later, we're still waiting for Dr.
Laura Schlessinger to "do the right thing."
On the May 22, 2001 "Dr Laura" show, the host, Laura Schlessinger, PhD, received a call from "Michelle," who had a dilemma because her sister
wanted to exclude her own nephew with Tourette's from a family wedding
celebration. Initially, Dr Laura insisted to Michelle that she should
basically stay out of it -- "have no opinion." But, once
Dr Laura heard that the child had Tourette Syndrome, she completely reversed
herself and stated that Michelle had
"picked the wrong sister" to support. One of her
justifications was, "I'm going to come to your
party and just scream, '*F*-you, F*-you, F*-you,' every five seconds and see if you want to invite me back."
"Dr Laura" assumed the child had coprolalia, when none had been mentioned,
and appeared to believe that coprolalia was a common part of the condition.
This insensitive response, contradictory to the "Dr Laura" show's
professed family values, resulted in discussions
throughout the internet and "a
*lot*" of letters to the "Dr Laura" show from persons with
Tourette syndrome. Her response was in direct contradiction to her first
position that the caller should not take sides, and to her statements about the
importance of family in weddings in the June
issue of her Perspective Magazine, which said:
But the fact is that it takes MORE than a ring and a date to make a
marriage work.
1. Remember the sacramental significance
of the wedding. ... This
is not a party. ... Focus on the fact that your wedding day is the first
day of a new family's life: the life of the family that you are creating in
unison with your spouse.
Dr. Laura's ''Is it Love?'' Test
... Take the test and you'll quickly know whether your relationship has a good
chance of growing into a long-lasting relationship, and maybe even marriage.
...
4. Do you appreciate and enjoy each other's family and friends?
On May 25th, the host had the opportunity to re-address this topic, and
managed to mangle things even further. She stood by the position she had
taken of excluding a 12-year-old boy with Tourette's from his own aunt's
wedding, stated that the mother of the boy was the one without feelings, and went on to broadcast
damaging, inaccurate, outdated information about coprolalia and the
pharmacological treatment of TS as justification for her response, in
spite of having numerous sources of more accurate information provided to her
via those faxes. She claimed to have done this research on Tourette's
in her capacity "as a scientist" (although her degree is in physiology, and not
in medicine, psychology or psychiatry), but she based her statements on 20-year
old data from an outdated textbook.
The second discussion of
Tourette's, where she dispensed outdated and inaccurate information about
Tourette's syndrome "as a scientist," after she was provided with
accurate information about the condition, warranted a full boycott of her
sponsors and advertisers.
Complaints should be faxed to the "Dr Laura" show (Fax: 818-461-5140), and should be no
longer than one page. A more effective means of making your position known is to write to her sponsors
and advertisers, indicating that you will not support any company
who sponsors
this show. Addresses,
e-mails, and fax numbers are listed here. You can further help by
locating and posting to this board the contact info for any local sponsors of
the "Dr Laura" radio show.
Your children with Tourette's syndrome might want to send her an essay
titled, "Growing
Up With TS Is Hard," as she just made it harder.
This campaign will continue until/unless Dr. Laura "goes
and does the right thing," by taking action to
correct the damage done; for example:
1. Retract the inaccurate information broadcast about coprolalia and
correct the misperceptions about the use of Haldol for treatment of Tourette's,
or
2. Apologize to the community of persons with Tourette syndrome for
her irresponsible statements about the condition and for taking sides against a
child with an involuntary, medical, neurological condition, rather than sticking
to her stated position that the sister should remain neutral, or
3. Broadcast accurate information about the condition to counteract
the perceptions she has created to potentially 20 million listeners, which can
result in misdiagnosis of those who may now believe that coprolalia is a
prominent feature of the condition or that it is easily treated with medication.
On May 31st, the National Tourette Syndrome
Association (TSA) responded to the "Dr Laura" misinformation with a press
release.
Following the launch of the boycott and the TSA press
release, the host made statements
on the air partially retracting only one of her previous erroneous statements.
She acknowledged that coprolalia was present in only 10 to 15
percent of persons with TS, and agreed that an arrangement to try to allow the
child to be present at the wedding would be a good compromise. Her
characterization in that statement of the original conversations doesn't seem to
match the recorded transcript. She corrected the misinformation about
coprolalia, but she never directly apologized or admitted she had been mistaken
about 1) treatment success with haloperidol, 2) behavioral interventions in
children with tics, or 3) the idea of excluding family members from family
events because of medical conditions.
A Premiere
Radio spokesperson posted an apology, allegedly on her behalf to an internet bulletin board.
The statement read on the air was added to the drlaura.com
website, but it did not include the apology, such as the one that was posted by
a Premiere Radio spokesperson to an internet
bulletin board. Dr. Laura was provided with the opportunity to
authenticate and validate this apology by 1) adding it to her website, 2) making
the same statement on-air, or 3) sending it on letterhead with her signature to
the Tourette Syndrome Association. She has not done that, so we can
only conclude that the "apology" extended via a spokesperson on a
message board was not a valid reflection of "Dr Laura's" personal
intent or sympathy; rather a statement generated by her producers to appease the
internet community who had launched the boycott. The apology has not
been authenticated.
Tourette's syndrome is a neurological condition
of multiple, changing, repetitive, involuntary motor and vocal tics.Its most typical onset is at the age of five, with increasing symptoms
between the ages of 8 and 12, and a high likelihood of remission or improvement
of tics after adolescence.There is
no medication targeted specifically at treating TS or that works universally to
“control” it, and the side effects of the available drugs are often worse
than the tics.Children have limited success in learning to “manage”
their tics through modifications.Hence,
children at their most vulnerable developmental stages are often passing through
their most difficult years of coping with a baffling and stigmatizing condition,
complicated by myth, misperception, and judgment from an uncomprehending
society.Negotiating childhood can
be very difficult for children with TS, although the majority of persons with TS
go on to lead normal and productive lives.“Dr Laura’s” radio show on May 22nd added to the already
heavy burden carried by children with these involuntary movements and
vocalizations.
A very small percentage of persons with TS have coprolalia – the
involuntary utterances of socially inappropriate phrases.“Dr Laura” never established on air that the child in question
actually had coprolalia; rather, she appeared to assume that he did.While that may reflect her lack of understanding of the condition,
whatever his tics are, they are involuntary and warrant acceptance from his
immediate family EVEN IF he has coprolalia.“Dr Laura” seems to believe that he should be able to establish some
“control” over tics.Barring
that “control,” she casually tosses family values right out the window when
the bride perceives one member of the family as flawed with a medical condition
that might mar her day.What kind
of family will this bride be starting, since TS is genetic, and she is unable to
accept her own nephew with humor and grace?
“Dr Laura” repeatedly tells Michelle, the caller, that “she has no
opinion,” or she will “alienate one of her sisters.”Then DL switches gears and contradicts herself when she expresses a
strong opinion, sides with one sister against an innocent child, and tells
Michelle that, “you picked the wrong sister.”She refers to “the definition of a family,” and yet condones
ostracizing the bride’s nephew because that child doesn't meet the selfish
bride's expectations.It sounds
like DL has an issue with TS.She
refers to, “coming to your party and screaming F-You,” but overlooks that a
wedding is more than just a party:it’s
a family event, and the child in question is a nephew of the bride.She says that, “there are certain things you cannot
participate in,” but one wonders what value DL places on the “family”
in family events.A family
member’s wedding is not the “Bolshoi Ballet.”
“Dr Laura” equates Tourette’s with tuberculosis, a crippling and
contagious disease.The only
“disease” this child lives with is the ignorance and lack of compassion from
society.She calls his tic
behaviors “not normal,” “not nice,” and “inappropriate no matter
what’s engendering it.”Tics
are not willful behaviors:they are
involuntary movements resulting from a neurological condition.Rather than compare it to TB, DL might have asked if the bride also
planned to exclude everyone wearing eyeglasses, so her wedding photographs
wouldn’t be marred.If DL will
have anyone with unusual behaviors excluded from weddings, Loopy Uncle Louie is
going to be staying home more often.Surely,
this family realizes one of their members has an involuntary, neurological
condition and guests at the wedding will know what it is about, or have an
opportunity to learn.Invoking the
notion of him “swearing” in church was a cheap shot by DL.
Henceforth, I will boycott all corporations, advertisers, carriers, and
sponsors of “Dr Laura” shows or website, until or unless she apologizes to
persons with Tourette’s for this outrageous display of her lack of knowledge,
compassion, sensitivity, and family values.
My second letter (May 26th):
On May 22nd, the “Dr Laura” show advocated that a sister
take sides against her other sister, who has a son with Tourette syndrome, and
join her third sister, a bride, in supporting the exclusion of their 12-year-old
nephew with Tourette syndrome from the family wedding.On May 25th, the “Dr Laura” show included a response to
the protests lodged against the original show.
While the original show was merely insensitive (similar to an older
segment about a child with autism), the second (May 25th) show
took the situation to a new low, when the host broadcast outdated, inaccurate
information about Tourette’s syndrome.
The host used an outdated medical textbook, did not verify that her
sources were accurate or up-to-date, and did not give important qualifiers
explaining the data she was using; all the while professing to be exercising her
abilities as “a scientist.”Addressing
the inaccurate things she said on the air:
1.Yes, behavioral
techniques have been successfully employed in some persons with Tourette’s.However, they are less than successful with children, who are not always
able to “manage” their tics behaviorally.They are, however, able to choose a seat near a door or exit.
2.Tourette’s syndrome is
not a “disease:”it is a
syndrome or a condition.
3.Up to 60% of patients
referred to specialty, tertiary clinics may have coprolalia (Singer
C., Neurol Clin. 1997 May), based on older data and literature.However, the vast majority of persons with Tourette’s never come to
specialty (tertiary) clinical attention (Mason
A, Banerjee S, Eapen V, Zeitlin H, Robertson MM. Dev Med Child Neurol. 1998 May),
and the number more often quoted for the overall population of persons with TS
is 8% (Singer)
to 14% (Freeman
RD, et al, Dev Med Child Neurol. 2000 Jul).The host was misleading or misinformed or unaware of how to read medical
literature when she stated that coprolalia occurs in 60% of persons with
Tourette’s.This information is
blatantly wrong.
The host neglected to consider other and very manageable options to help
bring this family together rather than further divide them; such as simply
providing a seat near a door or exit to the child, sparing him a possible
lifetime psychological scar at the expense of his selfish aunt.
The host is “bemused” by the responses she has gotten.The solution to her dilemma of “cautionary bemusement” is
simple:retract the inaccurate
information; learn about Tourette’s and correct the incorrect info broadcast
with updated information; and consider the damage her advice will result in to
one small, innocent child with a neurological condition that he will most likely
outgrow, hopefully with as few scars as possible because of ignorance spread by
irresponsible talk show hosts.It’s
just that simple.Until such time,
I will boycott all “Dr Laura” sponsors.
(Just a note: this website was
designed for newcomers to Tourette's syndrome, to be read through in page order.
You can browse the pages in the order you desire, but if you're new to Tourette
syndrome,
you may get a better overview by reading through the pages in order, by clicking
on the Next Page links throughout.)
A word about spelling
The official name of the condition, according
to the DSM-IV-TR, 307.23, is Tourette's disorder.
Tourette's is also referred to as TS, Tourette Syndrome, Tourette's syndrome,
GTS, and Gilles de la Tourette's Syndrome.
Common misspellings are tourettes syndrome, tourretts, tourrettes, touretts,
terrets, terets, turettes, turetts, turets, turetes and turrets syndrom.
Tourette's disease is a common misnomer (it's not a disease).
Tick is a common misspelling: ticks are nasty critters that suck blood
from dogs and people. People with Tourette's disorder have tics.
If you're looking for the Tourettes Syndrome Guy video or Tourettes Guy video
clips:
they're not here, but please stay and browse for some accurate information about
Tourette's syndrome.
Copyright 2000, 2001, 2002, 2003, 2004, 2005, 2006, 2007. All
rights reserved.
No part of this publication may be copied, re-printed, or used in any form
without my prior consent.
In May of 2001, Dr. Laura became the most infamous example of
myth, misinformation, intolerance and misunderstanding of the symptoms of
Tourette syndrome and people with Tourette's, when she broadcasted wildly
inaccurate information about the condition. Presented with the opportunity
to correct the misinformation on air a few days later, and having had time to
research the condition, she disseminated even more misinformation about
Tourette's syndrome.
November 10,
2004 update. 
On the May 22, 2001 "Dr Laura" show, the host, Laura Schlessinger, PhD, received a call from "Michelle," who had a dilemma because her sister
wanted to exclude her own nephew with Tourette's from a family wedding
celebration. Initially, Dr Laura insisted to Michelle that she should
basically stay out of it -- "have no opinion." But, once
Dr Laura heard that the child had Tourette Syndrome, she completely reversed
herself and stated that Michelle had
"picked the wrong sister" to support. One of her
justifications was, "I'm going to come to your
party and just scream, '*F*-you, F*-you, F*-you,' every five seconds and see if you want to invite me back."
"Dr Laura" assumed the child had coprolalia, when none had been mentioned,
and appeared to believe that coprolalia was a common part of the condition.
And what is with
these "Dr" talk shows ??
