Aspies For Freedom

There's this one Amy:

mental healthline (freephone) 0808 808 3333

7 pm - 11 pm every day.

This is for anyone with mental health issues "When you just need someone to talk to..."  says its card. "Here to listen."

The card was given to me by a lady from the community mental health team, but I have no idea how helpful it is.

Stella

How very New Labour! In their scramble to try to palm everthying off on the voluntary sector that isn't profitable to privatize, the local mental health team have even given out help line numbers for a completely different region! I live in East Sussex!

Stella

Amy, I just tried it and it seems it does work from Brighton (though I got a recorded message saying all their operators were busy)

There is also SANELINE

0845 7678000

Stella

Slayings raise questions about online threats

By Alicia Chang

THE ASSOCIATED PRESS


LOS ANGELES - Two weeks before William Freund donned a mask and cape and fatally shot two neighbors before killing himself, members of an online forum for people with a rare mental disorder read the 19-year-old's string of violent rantings.

Freund's online musings and his pre-Halloween rampage raised fresh questions about the little-policed world of Internet discussion rooms: What, if anything, should Web site gatekeepers do when users post threatening messages online?

Internet law experts generally agree there is no legal onus on site owners or users to notify police. Cyberspace is so intricate and its users often anonymous that to react to every threatening post would be impossibly time-consuming and expensive.

Still, ethicists say operators should try to alert authorities if they think a user is serious about committing harm. While monitors of Freund's postings unsuccessfully tried to reach his parents, they didn't reach out to authorities.

"If there are signs that people are going off the deep end and we don't do anything about it, then it could have calamitous results," said Richard Spinello, a Boston College professor who specializes in technology and ethics.

In recent years, a handful of chat-room users who published violent messages have been prosecuted, but such threats rarely are carried out, legal experts say.

Web sites where the threats are posted are rarely sued because they're not legally bound to alert police, said Nicolas Terry, an Internet law expert at Saint Louis University's Center for Health Law Studies.

Before last weekend's shootings, Freund begged for help and told an online message board for people with Asperger's syndrome, a neurological disorder marked by a lack of social and communications skills, that he was lonely and suicidal and would begin a "terror campaign to hurt those that have hurt me."

Some users of the Web site, wrongplanet.net, thought Freund was crying wolf. Others reached out with advice.

"He seemed really troubled, but he didn't seem like the type of person who would do this," said site operator Alexander Plank, 19, a computer science student at George Mason University.

Since the killings, Plank said, the site's monitors have become more vigilant about online postings and are debating whether to collect information about users. One Internet scholar warned against that approach.

"It is very risky to impose responsibility on Web site owners to police their users," said Jennifer Granick, executive director of Stanford University's Center for Internet and Society. "How do you know if someone is serious? Are you making a big deal out of nothing? How hard are you supposed to try? Are you betraying the person?"

In recent years, online chat rooms have mushroomed into virtual communities where people can reinvent themselves behind screen names. For people with a rare disorder such as Asperger's, interacting online can be especially therapeutic.

But online forums can also free some users to post exaggerations or lies, making it difficult for Webmasters to distinguish fact from fiction. And many of those message boards are patrolled by volunteers who may not be able to recognize a problem because they are young or not trained as mental health professionals.

After the shootings, one member of wrongplanet wrote that, "no-one here has the capability - in any practical sense - to offer the level and sort of help needed."

Complicating the matter are privacy laws and Web site policies that prohibit operators from surrendering personal user information to the government, unless there is an immediate danger.

Authorities are still trying to determine what set off Freund on Oct. 29, when he drove to his neighbors' home in Aliso Viejo, a wealthy section of Orange County and killed a father and his 22-year-old daughter. The teen also fired into another home, wounding the person inside, and tried to shoot another neighbor. When his gun misfired, he went home and committed suicide.

Orange County sheriff's spokesman Jim Amormino later urged Internet users to call police if they notice suspicious postings.

After the shootings, the wrongplanet site fluttered with comments.

"I think if there is ever another member here who says things about wanting to harm people," read one posting, "we should do something about it. I don't know what we can do, though."

On the Net:

Orange County Sheriff's Department: http://www.ocsd.org

Asperger's syndrome chat room: http://wrongplanet.net/

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You're right, Loner. There'll be all sorts of NTs, curebies, self-appointed regulators, and Rottenburger types snooping at Wrong Planet now. That AP article is syndicated all over in dozens and dozens of papers.   They'll probably start snooping in here soon, if they haven't already.  

If a golfing enthusiast went mad and killed people with a golf club - as surely must have happened - no one would say that all web sites related to golf must now be watched even though an interest in golf is the plainest evidence of cognitive impairment - though whether it should be included in the so-called "triad of neurotypical impairments" is still open to debate.

Stella

I didn't write that! It's not a quote from me!  :?

Stella

I personally think the meds he was on are to blame -- I think that some meds work totally different on us than on nt's. I was on Cipralex for a week once, and I couldn't sleep and I was starting to think that preschool children were spreading rumors about me. I was thankfully able to step down on the dose and quit!

There was this 9th grader there who was on a week-long work placement at my workplace as a janitors assistant. I had this totally insane idea that he was going to look through "my" computer to f... it up...
What are the possible side effects of Geodon?

I actually believe that meds like this does more harm than it has advantages.

Ziprasidone in Children with Autism: A Pilot Study

This study is no longer recruiting patients.

Sponsored by: Drexel University
Information provided by: Drexel University
ClinicalTrials.gov Identifier: NCT00208559


Purpose

The purpose of this study is to see if the drug, ziprasidone, is effective in treating problems in adolescent associated with autism.
Condition  Intervention Phase
Autism
  Drug: Ziprasidone
Phase II


MedlinePlus related topics:  Autism


Study Type: Interventional
Study Design: Treatment, Non-Randomized, Open Label, Uncontrolled, Single Group Assignment, Safety/Efficacy Study

Further Study Details:
Primary Outcomes: Clinical Global Impressions
Secondary Outcomes: Children's Psychiatric Rating Scale
Expected Total Enrollment:  18

I. SPECIFIC AIMS

To investigate the safety of clinical use of ziprasidone in children
To investigate the dosages that have been employed clinically.

II. BACKGROUND AND SIGNIFICANCE

Ziprasidone, a recently released atypical agent is likely to be as effective as other neuroleptics in treating psychiatric symptoms in children, but may have the considerable health advantage of not causing weight gain. Ziprasidone administration has been associated with prolongation of the QTc interval (mean=20 msec), an electrocardiographic measure of ventricular repolarization (Federal Drug Administration, 2000). There are no reports regarding the use of ziprasidone in autism, and data regarding the safety and efficacy of ziprasidone in children is extremely limited. The only published study of ziprasidone in children found that it was safe and effective in treating Tourette’s syndrome in children aged 7 to 17 years of age (Sallee et al, 2000). Because children are being treated with ziprasidone despite a paucity of safety data, it is important to begin to collect and review available data, including that from clinical usage. Some children who receive services within the Child and Adolescent Psychiatric Services of Drexel University College of Medicine have been treated with ziprasidone. The charts of the children and adolescents will contain data regarding exposure to ziprasidone and laboratory data and ECG’s that can be reviewed to determine whether ziprasidone treatment has been associated with changes in weight, laboratory values and ECG’s. We propose to review the charts of patients who have been treated with our services since March 1, 2001 XXX because such patients may have been exposed to ziprasidone (ziprasidone received FDA approval on February 5, 2001).

III. DESIGN AND METHODS

A. Setting: The setting for this study will be the Specialty Clinic for Pervasive Developmental Disorders, part of the Child and Adolescent Psychiatry Outpatient Clinic at Eastern Pennsylvania Psychiatric Institute.

B. Subjects: Subjects will be 15 children and adolescents who meet the DSM-IV Criteria for Pervasive Developmental Disorder.

Inclusion Criteria:

Diagnosis of autism (DSM-IV) made by a boarded child and adolescent psychiatrist.
Males and females.
Aged 12 to 18 years.
Clinical judgment that medication treatment for autism is indicated.
Exclusion Criteria:

Major medical problems including cardiac, liver, endocrine, or renal diseases.
History of seizure disorder or gross neurological deficit.
Baseline QTC greater than 425 msec.
© Concomitant treatment with psychotropic medication. (d) History of prior exposure to ziprasidone.

C. Design: This is a 6-week pilot study employing open treatment with ziprasidone. Subjects will be rated at baseline and thereafter assessed weekly.

D. Medication: Subjects will be treated openly with ziprasidone. Should untoward effects occur, the dosage of the medication will be reduced or the medication will be discontinued, as clinically appropriate. Subjects will not receive other concomitant psychotropic medication during the study. Medication will be taken concomminent with food.

Ziprasidone Dosing Strategy: Ziprasidone tablets (5, 10, and 20 mg) will be employed for the study. The dosage range for ziprasidone will be 5 mg/day to 40 mg/day. Every effort will be made to reach and maintain a therapeutic dosage by week four of the treatment phase.

For subjects who weigh less than 25 kg, starting dosage will be 5 mg/every other day. After 3 days, the dosage can be increased to 5 mg. By week 2, subjects can be increased to 20 mg/day. Thereafter, dosage increases can be made in up to 20 mg increments weekly.
For subjects who weigh greater than 25 kg, the starting dosage will be 5 mg/day. After three days, the dosage can be increased to 10 mg/day. By week two, subjects can be increased to 20 mg/day. Thereafter, dosage increases can be made in up to 20 mg increments weekly as needed.
Note: Should 5 mg tablets not be available, the dosing schedule will be altered to have a starting dosage of 10 mg, and dosage increases will be made in 10 mg increments.

F. Measures

Primary efficacy measure: The Clinical Global Impressions (CGI; Psychopharmacology Bulletin, 1985). The efficacy of treatments can be judged on their ability to enhance global functioning, an assessment that is particularly relative in a pilot study. The CGI consists of three global scales measuring severity of illness, global improvement, and drug effect, and has been useful in measuring drug treatment effect in this population (see Campbell and Palij, 1985). The PI and another trained rater will complete this scale. Although only members of the research team generally complete this scale, it will additionally be completed by the subject's parent/caretaker. Having it completed by the parent/caretaker will take only minutes and may result in useful data. This measure will be completed weekly beginning at baseline.
Secondary efficacy measure: Children's Psychiatric Rating Scale (Psychopharmacology Bulletin, 1985). The CPRS was developed by the Psychopharmacology Branch of the NIMH to rate childhood psychopathology. Each of the items is rated from "1" (not present) to "7" (extremely severe). The first 28 items of this scale require no verbal response on the part of the subject, making them appropriate for rating children and adolescents with Pervasive Developmental Disorder. Of these 28 items, 14 are particularly relevant in autism (see Campbell and Palij, 1985): they assess the symptoms for which drug treatment is indicated including hyperactivity, aggression, self-abusive behavior, temper tantrums, lability of mood, irritability, social withdrawal, and stereotypies. A composite sum of these 14 items, the CPRS-14, will be constructed and employed as a secondary outcome measure, a procedure used by a number of investigators (Anderson et al, 1989; Campbell et al, 1986, 1989, 1993; Findling et al, 1997; Sanchez et al, 1996). We analyzed our data using the CPRS-14; the ICC was 0.8978. In addition, 4 factors derived from these 14 items will be examined. They include: autism, anger/uncooperativeness, hyperactivity, and speech deviance (Overall and Campbell, 1988). This measure will be completed at baseline and at the end of treatment.
Safety measures: (1) A physical exam will be completed at baseline. (2) Height, weight, blood pressure, and pulse will be obtained and recorded at baseline and at each visit during the study. (3) The following laboratory measures will be obtained at baseline and repeated at the end of the treatment phase: complete blood count with differential, liver functions, and electrocardiogram. Serum prolactin will be obtained at baseline and at the end of the treatment phase. These laboratory studies will be repeated at the end of the treatment phase of the study. Any other clinically appropriate tests and evaluations will also be completed whenever needed.
Untoward effects will be measured and recorded at each visit employing the following measures: (1) Dosage Record and Treatment Emergent Symptom Scale (DOTES); (2) Treatment Emergent Symptoms Scale (TESS); (3) Abnormal Involuntary Movement Scale (AIMS) (all from Psychopharmacology Bulletin, 1985); and (4) the Neurologic Rating Scale (Simpson and Angus, 1970). The DOTES and TESS measure a wide range of possible untoward effects. The AIMS measures dyskinesias. The Neurologic Rating Scale measures other forms of extrapyramidal effects that can occur with neuroleptics such as dystonias, parkinsonian effects, and akathisia.

G. Procedures: All patients appropriate to the study and their parent/caretakers will be approached and informed consent and assent (in subjects under 14 years) will be obtained. Subjects meeting the Inclusion Criteria, but not the Exclusion Criteria, will enter the baseline period of the study.

Baseline (week 0): Subjects will be rated at baseline employing the CGI and the CPRS.

End of Treatment (week 6): At the end of the treatment period, subjects will again be rated employing the CGI and the CPRS (selected items).

In addition, each subject will be rated on the CGI at each visit so that data from the last visit is available should the subject terminate the study prematurely. If it is known that a subject will terminate the study at a visit before week 6, the subject will be rated with the CGI and the CPRS at that visit.

All safety measures will be completed at each visit. Laboratory measures and EKG will be obtained in the morning.

I. Analysis: This is a pilot study whose purpose is to get initial safety and efficacy data with ziprasidone in children with autism. We will perform an ANOVA, repeated measures, for CGI severity scores, the CPRS-14 and the CPRS factors. Similar analyses will be performed for safety measures including for weight, prolactin and other laboratory measures, and EKG indices.

Eligibility

Ages Eligible for Study:  12 Years   -   18 Years,  Genders Eligible for Study:  Both
Criteria
Inclusion Criteria:

Diagnosis of autism (DSM-IV) made by a boarded child and adolescent psychiatrist.
Males and females.
Aged 12 to 18 years.
Clinical judgment that medication treatment for autism is indicated.
Exclusion Criteria:

Major medical problems including cardiac, liver, endocrine, or renal diseases. (b) History of seizure disorder or gross neurological deficit. © Baseline QTC greater than 425 msec. © Concomitant treatment with psychotropic medication. (d) History of prior exposure to ziprasidone. -
Location Information



Study chairs or principal investigators

Richard P Malone, MD,  Principal Investigator,  Drexel University College of Medicine    
More Information

Study ID Numbers:  00936
Last Updated:  September 20, 2005
Record first received:  September 13, 2005
ClinicalTrials.gov Identifier:  NCT00208559
Health Authority: United States: Institutional Review Board
ClinicalTrials.gov processed this record on 2005-11-04

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So according to this, no one yet knows what effect ziprasidone ("Geodon") has on autistic people.

Stella

J Am Acad Psychiatry Law. 2005;33(3):390-3.

Asperger's Disorder and Murder.

Schwartz-Watts DM.

University of South Carolina School of Medicine, 15 Medical Park, Suite 102, Columbia, SC. donnasw@gw.mp.sc.edu.

Little is known about the prevalence of violence and autistic spectrum disorders. This article reviews findings of current research on Asperger's disorder and violence. Criteria for diagnosing Asperger's disorder are given. Three cases are presented in which defendants with diagnosed Asperger's disorder were charged with murder. Specific symptoms in this disorder are discussed as they relate to issues of diminished capacity and criminal responsibility.

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well done AspieGirl!  :smile:  Make them realize that we are out here and watching!

Stella

Report: OC gunman was social outcast, even on the Internet

ASSOCIATED PRESS

4:33 p.m. November 6, 2005

LOS ANGELES – The Orange County man who killed two neighbors and then turned a shotgun on himself desperately sought friends on the Internet but was ridiculed for his sometimes angry and bizarre messages.
William Freund, 19, had no more success finding companionship online than he had in high school, where his poor social skills made him the butt of cruelty.

  
In the wake of last week's rampage, Tiffany Key, Freund's former high school classmate, wondered via the Internet: "Think about your interactions with him. Were they positive? Or were you one of those kids that made his life hell?

"If you did, then please change your life. This is your wake-up call."

Two days before Halloween, Freund, who lived in the wealthy community of Aliso Viejo, donned a cape and a paintball mask and drove to a neighbor's home, where killed a father and his 22-year-old daughter. He also fired into another home, wounding a person inside who was cut by flying glass. Freund's shotgun jammed when he fired at another neighbor. Freund then went home and shot himself.

Freund had Asperger's syndrome, a neurological disorder characterized by poor communication and social skills. As an undergraduate at Aliso Niguel High School, he reportedly was harassed, spit on and had his head pushed into the toilet.

People laughed at him and harassed him in the school halls, Key told the Los Angeles Times for a Sunday story.

"He wouldn't get aggressive. He would never retaliate," she said. "He would just take it, day after day."

"Here's a guy who had it really hard and nobody made it any easier for him," said Tio Lavranos, 19, another former classmate.

After Freund graduated last year, he got a part-time job at a computer repair shop in Corona del Mar.

"He didn't have much of a personal life with friends," said Forrest Fuster, his former employer. "He did a lot of work and no play. All he did personally was play on the computer."

Freund only opened up on the Internet, which he accessed from his computer-filled bedroom at his parents house. The Times said he played online games, discussed movies and TV shows such as "The Outer Limits," posted reviews of online businesses, bought and sold video games and paintball supplies on eBay.

He left pleas for friendship on some Web sites.

"I've never really had a friend," Freund wrote in one profile. "I've never had someone I can share more intimate conversation with, or just have a good time with."

In more troubling messages, he discussed guns and, in the weeks before his death, talked about his thoughts of suicide.

"I think the only thing to do is go admit myself to a hospital I feel like I need to kill myself," he wrote in an Oct. 19 post on wrongplanet.net, a Web site for those with Asperger's syndrome.

In one message, Freund said he planned to "Start a Terror Campaign To hurt those that have hurt me," and added: "My future ended some time ago."

In a firearms forum on the Web site somethingawful.com, Freund talked about staging a "Halloween shootout" to get even with pranksters who vandalized his pumpkin last Halloween.

That was met with ridicule.

"I can imagine this mongoloid, sitting on his creaky porch, one strap on his overalls, leaping up and running to the defense of his precious 24-ounce pumpkin," read one response.

Freund's comments got him banned from the Web site three daysbefore his rampage.

Diagnosis isn't about violence

After slayings in Orange County are linked to Asperger's, those familiar with it move in with support and education.

By Rosie Mestel, Times Staff Writer
LA Times
14th November 2005

"MOM, I'm not like that," 21-year-old Tom Iland told his mother as they watched a TV news report about a young man with Asperger's syndrome who killed two neighbors in Orange County.

It was a poignant moment for 48-year-old Emily Iland. Her son, who also has Asperger's, was worried that others would think him capable of such violence.
  
It wasn't just Tom. Since the shootings in Aliso Viejo, people with Asperger's syndrome and their families have been thinking, talking and e-mailing one another. They have been sharing their upset and fears — and brainstorming some practical steps to allay public fears and forestall such tragedies in the future.

On Oct. 30, 19-year-old William Freund dressed in a paintball mask and cape, entered a neighboring house and killed Vernon Smith and his daughter Christina, 22, with a shotgun. He shot at others, too, before returning to his house and shooting himself. In the days afterward, it was revealed that Freund frequently posted in an online forum for people with Asperger's, a condition that causes profound gaps in the ability to read social nuances but is not generally associated with violence.

Michael John Carley of New York City founded GRASP, a support group network for Asperger's syndrome and related conditions, in 2003. The shootings, he said, have galvanized his group's resolve to expand across the country. "I don't know enough about this young man to deduce if we would have been able to have an impact," he said. "Maybe there was some other diagnosis going on that we don't know about."

Carley, 41, was diagnosed with Asperger's in 2000, along with his son, now 9. "It's a very lonely place if you have no sense of shared experience with somebody with similar wiring to yours," he said.

People in the Asperger's community are not saying their disorder neatly explains the killings. In fact, some are upset that Freund's crime is being linked to Asperger's at all.

"What bothers me is the implication that there's something about Asperger's syndrome that causes people to do this kind of thing — kind of, 'Look out for the dangerous Asperger people,' " said Jerry Newport, 57, who founded a Los Angeles support group for people with autism and Asperger's in 1993. He now lives in Tucson and travels frequently to speak on the topic.

"The only connection you can make between Asperger's and what happened is that his Asperger's syndrome may have set him up for ridicule as a child," Newport said.

Days after the slayings, Newport and others in the Asperger's community brain-stormed ways to ramp up help, such as creating a crisis hotline staffed with people familiar with Asperger's and autism. They double-checked to make sure that their support groups had blanket policies of reporting threats to police.

One activist contacted the Orange County sheriff's office with an offer to put on an educational town hall meeting about Asperger's; another is in discussions with the New York Police Department about training for crisis intervention officers.

Though they don't excuse Freund's actions or know details of his case, many say they relate to some of the anguish he may have felt.

People with Asperger's, while often highly academically gifted, tend to lack basic social skills such as knowing how to read a face or hold a conversation, or when to tell little white lies. They are apt to talk relentlessly about their deeply held and sometimes quirky passions, be they city maps, industrial cooling towers or, for Tom Iland, anything pertaining to "Star Wars." The condition, which varies greatly in severity, affects an estimated one in 250 to 500 children, mostly boys.

The social awkwardness can add up to a childhood of ostracism and being the butt of playground jokes.

"I was alienated when I was in school. I was made fun of. And I did feel very alone," said Benjamin Levinson, 36, of Culver City. "I tried to make friends, but I never really could make any — I just didn't know how." He received a string of incorrect diagnoses before finally learning in his 20s that he had Asperger's. "Looking back on my life, I know that there was a time between when I was about 13 to the time I was maybe 22 or 23, I was just really angry…. Thank God I was able to get some help when I needed it," he said.


The future looks brighter

Life may be easier for the next generation of children with the disorder.

Today, because of far greater recognition of autism and related disorders, children with Asperger's syndrome are much more likely to receive a diagnosis early and get the help they need, such as support groups and social-skills education, said Laurie Stephens, an Asperger's and autism specialist with the Help Group. Among other things, that nonprofit organization runs Village Glen, a school in Sherman Oaks specifically for children with Asperger's and related disorders.

"These are people who really want to be able to get along with other people, but it just does not come naturally," Stephens said. "There are many hidden social rules, and they need to be taught them."

Iland was a Village Glen student a few years back — and he and his mother credit it with helping him make the transition to a regular high school, then to community college. He's now a junior at Cal State Northridge, studying for a degree in accounting. He still lives at home and has a mentor to help him with life skills.

"Violence and revenge isn't the answer," he said, talking on the phone from the CSUN campus last week. "I'm a big 'Star Wars' fan, and [in the films] those who seek revenge are the bad guys."

But special schools can serve only a few. To make the Santa Clarita area public schools easier for her son and others like him, in 2003 Emily Iland pushed to start a peer mentoring program devised by the University of Minnesota in which children with disabilities are paired with nondisabled students.

Now she is working on a new project aimed at educating those in law enforcement about Asperger's and autism. She recently convened a training session for more than 275 judges, sheriffs and attorneys in Santa Clarita and is working on a DVD aimed at teaching youth with Asperger's to interact safely with law enforcement and communicate their anxieties and frustrations instead of letting them escalate.

Perhaps none of these things could prevent a tragedy such as the one in Aliso Viejo, she said, "but we're being as proactive as we can."

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