First, let's not get distracted about whether Asperger's or autism are "mental illnesses" or not -- this is a shorthand widely used by the press and general public and that's okay. These conditions are listed in the Diagnostic and Statistical Manual of Mental Disorders; the DSM is what defines and records mental illness. These conditions are in the DSM; they have not been removed. The removal of the entry on Asperger's, not without its controversy, does not mean that this condition is now pronounced "not a disorder"; of course it is. It is merely moved to another section and merged with "autistic spectrum" where it is believed to be more properly located. See also the NIMH.
As this psychiatrist notes, parents in particular, and young adults involved in advocacy movements, become very angry about what they see as stigmatism, and demand that society change its terminologies; rather than to de-stigmatize mental illness, and particularly the seeking of care for it, some have tried to carve out a special niche for themselves as "not mentally ill". The psychiatrist says the task should be to destigmatize mental illness as a whole, not disprove that autism isn't a mental illness. I agree. I would add, however, that just because mental illness should be de-stigmatized doesn't mean we should cease to tell the truth about it -- it is not all whimsy and catching butterflies; some days it involves a parent holding down their large and violent child clanging from Seroquel and preventing him from eating large handfuls of staples until the ambulance gets there.
WHAT IF THERE IS A CONNECTION TO VIOLENCE?
Second, let me state the remedies I seek -- I think often people debate about these issues with such furious frenzy because they think the solutions people would offer would take away their freedoms or harm their kids. So:
1. People who threaten themselves and others repeatedly and seriously should be able to be placed even against their will in psychiatric confinement for sufficient periods until they are stabilized and have a viable treatment plan. That means those who are not violent and do not threaten themselves or others seriously should not be institutionalized.
2. This long-term confinement should be done with judicial review and a court order, but should not be such a prolonged and difficult process with prejudice against confinement, that persons who need restrictive environments do not get them in a timely manner. So if a violent teen with a history of mental illness is brought to an ER, his parents should get timely help without waiting weeks in Family Court.
3. The confinement should be humane and in institutions with accountability and transparency that regularly receive legislative and/or judicial review and should be open as well as non-governmental civic review.
4. Those persons who already have custody of others because they have obtained a PINS (person in need of supervision) order or other form of custody or care based on diorderly conduct should be able to obtain psychiatric confinement without having to start the process from scratch each time.
5. There should not be stigma attached to the process of obtaining psychiatric confinement or undergoing psychiatric confinement, any more than there is a stigma attached to be living in a senior citizens' home or assisted living facility. Yet again, the severe behaviour disorders that leads to this confinement should not be neutralized or minimized as somehow not harmful to others or the patient himself, in order to remove the stigma of confinement; it should not be necessary. This is something like the Catholic doctrine of "hate the sin, not the sinner": be truthful about the actual bad behaviour, especially violent disruptive behaviour that a mentally ill person causes and commits against others, and seek to minimize it, but be compassionate and caring to the person himself because of his condition.
6. Psychiatric evaluation and confinement made by police or even with judge's orders are currently insufficient -- they run 24 or 72 hours at the maximum. The observation and treatment period needs to be extended to 30 days or more. More long-term capacity must be returned to the mental health system.
7. Ideally, relatives and care-givers and/or the patients themselves must not be forced to accept medication of the patient as a condition of confinement. To the extent possible, other means of gaining the patient's cooperation should be established without excessive restraint or medication. When patients are given medications, they should be monitored carefully and dosages kept to a minimum while they are watched.
8. In general, medications used on psychiatric patients should be reviewed extensively, particularly when they are used on children, some of very young age. Too many side effects and adverse consequences have occurred due to these medications. Investigations should be made as to the extent to which violent behaviour, including public shootings, are the result of psychiatric medications themselves, rather than the result of insufficient medication and psychiatric treatment.
9. Institutions should become more open to families, with programs like occasional overnight stays, volunteer participation, joint activities, etc. so that they are not isolated. By the same token, a patient put on a non-elopement ward should be go through step-down, and not released immediately back to the public without a sufficient caregiving plan.
10. "Community care" should not mean overcrowded clinics where the mentally ill wait in lines all day to get a cursory blood test or medication dispensed; they should include meaningful and sustained programs for therapy and occupational training, etc.
There may be other ideas for reform, but the objective is clear: the pendulum has to swing back from the extreme it went to when civil rights activists and concerned citizens rightfully sought to close down Willowbrook and similar abusive institutions, but then were unable to ensure that the mentally ill got adequate care in the next 25 years after this period-- leading to subway pushings and school shootings. That's where we are now.
WHAT WOULD BE THE METHODS WE WOULD REJECT IF THERE IS A CONNECTION?
So let me now note the things that I would utterly reject as any response to the shootings in Newtown or elsewhere:
o a national registry of all mental health patients (this is what the Soviet Union had and Russia still has -- let's keep that in mind!)
o special massive screening by either public or private authorities of anyone with Asperger's or any mental health problem to see if they may potentially become violent;
o confinement of anyone with Asperger's if their parents just found them annoying or difficult and needed respite;
o confinement of Asperger's/autism patients for long periods without any court order;
o removal of Asperger's/autism patients from mainstream education in schools because of fears of violence;
o child protective services removing Asperger's/autism patients from their homes in the belief that their parents can't take care of them properly;
o censorship of violent movies and violent video games and confiscation of them from stores or from Internet web shops;
o censorship or closure of violent chat forums, online role-playing war games, etc.
There more be more that worries those who have dug in their heels about this issue, but this should establish the basics here: all human rights for all. Mentally ill have rights; so do families and the members of the community at large. They must be in a balance.
MY EXPERIENCE WITH THESE ISSUES
What is my basis for making these statements?
I am not a doctor or other medical professional; I'm not an academic; I'm just a thoughtful person who happens to have observed these issues at close-hand.
Through various life circumstances I have had the experience of dealing with cases of relatives, friends, and co-workers who have been mentally ill and have had to experience psychiatric confinement and I've also followed such cases through various jobs I had.
For a number of years I worked actively on psychiatric abuse in the Soviet Union, and followed some of the cases both in Russia, and then abroad where some of the people were re-institutionalized.
Critics of Liza Long, including Sarah Kendzior, whose comments I've refuted here, have made much of the fact that she supposedly exposed the privacy of her son on the way to publicizing the anguish her family experienced in dealing with his Asperger's/autism condition.
I don't believe that she has in fact exposed her son's identity, by giving him a fake name and having her own name a very common one, and I don't think it's a valid issue. I personally am not giving details of cases I've witnessed first-hand precisely because of this privacy issue, but I certainly respect any parent who has become so overwhelmed that they have broken the curtain of silence on this topic. More and more people have to speak out; when more and more people speak, the problem of stigmatization which is driving those obsessed with privacy will start to dissipate.
A number of people discussing this issue are tweeting from academic idylls; from suburbia; from affluence; from positions where they don't even have children or don't even work with children or have never even visited any of these institutions or experienced the issue of psychiatric confinement.
Not me. I'm in the heart of the urban grit and am poor and without a lot of resources myself, so I see this issue in ways others may not have had the opportunity.
RUSSIAN AND AMERICAN PSYCHIATRIC HOSPITALS
I've had the experience of being in both Russian and American prisons and psychiatric hospitals and alcoholic and drug clinics, and there's no question which ones are worse: the ones in Russia. While not as many people are thrown in psychiatric hospitals in Russia today for their dissent as they were at the apex of the Soviet abuse of psychiatry, some still are, and the conditions simply are far worse because of the lack of remedies. Some people try to create a moral equivalency between these two situations but they are widely divergent; I don't believe there are dissidents wrongfully incarcerated in psychiatric hospitals in America, although I do believe that there are psychiatric patients with legal problems and cases of mistreatment -- and that's different.
Even so, American psychiatric hospitals can be abusive and are not ideal places for many people to be, especially for childern. One particular problem I've noticed with the facilities in New York and other big cities is that too wide a spread of ages are put together, so that young children and teenagers are mixed, with sometimes abusive results. While some facilities have classrooms where they continue school lessons in restricted settings, they have little else -- i.e. TVs with a few channels, or only one video, and no magazines or books or puzzles. There's a recent for this: violent children throw things at doctors and each other. Everything is bolted down.
I've seen very caring doctors struggling under less than idea circumstances do heroic things; I've also seen med students literally crash their head on the table from sleep deprivation as people were trying to learn about their relatives. I've seen kind and considerate police on duty attempting to help patients and families; I've also seen grossly overweight police who might crush a patient accidently as they struggle with him; I've also seen policewomen with young children at home pulling double shifts to make ends meet nod out in waiting rooms from exhaustion.
In Soviet Russia, they used the "roll-up" -- a wet canvas sheet which was wrapped around the patient and allowed to dry, sometimes then causing him excruciating pain. In New York, police also use a "roll-up" -- a large plastic mat something like an exercise mat which is used to roll up wildly disorderly people, like drunks pissing themselves and flailing their arms all over and trying to hit people. The New York version isn't cruel and inhumane, but it's not pretty, either, and accidents could happen -- one of those heavy and tired policeman could fall on to a patient and suffocate him.
Police are at the front line of mental health care in this country and that fact alone has to be admitted, studied and appreciated way more than it is. This isn't necessarily because of some evil authoritarian and cruel state, but because nobody else wants to deal with unruly and violent people, even when they are only 10 years old. With mothers working, with grandmothers living farther away, with fathers working or having left the family, care is at a premium. Care is what is missing in many people's lives.
Care -- and discipline. Schools long ago denied corporeal punishment -- a good thing -- and they are also denied even any means of restraint or even touching without fear of a lawsuit. Political correctness run amok, combined with a widespread fear of school schootings that lingers and erupts again and again everywhere mean that a young teacher who hears a kid tattle on another kid that he might have a knife, or sees a kid say "I hate you, I want to kill you," might finish the day by dispatching the child to the emergency room under police escort, instead of putting him in detention in an empty class room. That's how it's gotten.
Policemen can be helpful, but they aren't doctors -- and nobody wants to deal with the adults who are 20 and 30 and 60 when they commit mayhem in public, either. A policeman once noted to me casually that if the patient was still ranting about communism when he woke up, he'd remain under maximum security psychiatric confinement. But if he woke up and said, "Oh, I shouldn't have partied so hard," and dropped the communist stuff, he'd go down to Central Booking. What a choice! It turned out the patient had been called a "communist" by a bus driver who decided that every Russian must be one and had broken a window in a rage fit. My advice: go light on the communist stuff with your NYCLU lawyer, too -- they're not going to want to hear it.
CRIMINALIZATION OF BOYHOOD
I've written about the criminalization of boyhood and manhood -- in our day, 50 years ago, kids who fought each other to the point of bloody noses or black eyes were allowed to do so behind the barn and parents stayed out of it as they were too busy at the farm or store. Today, a school-yard scrap might lead to a trip to the ER and administration of powerful psychotropic drugs that take the place of physical restraints principals or parents might of used themselves decades ago.
By the same token, there is powerful denial and rampant political correctness on the issue of more severe violence leading to far more severe bodily injury or even knifing or shooting deaths. In New York's inner city schools, young black and Hispanic males caught up in gang warfare are both the perpetrators and the victims of this violence. Schools bristling with armed police and metal detectors have done little to reduce the actual violence and crime experienced by many.
Twit-wits, often young black men, wrote after Newtown that in America, violent white people are called mentally ill; violent black people are called criminals; and violent Muslims are called terrorists.
That's actually not true, as there are plenty of white children in juvenile hall and plenty of black children in psychiatric hospitals and Muslims in both. I guess you have not seen the depths of sorrow until you have witnessed the howling psychiatric rage tantrum of a 14-year-old black girl with severe opposition defiance disorder and bipolarity addicted to drugs who is visibly pregnant with her stepfather's child. Remember Tender is the Night? New York city psychiatric hospitals are not like those expensive Swiss clinics Scott Fitzgerald wrote about... Even so, what's your plan? Send her back to dysfunctional, drug-addicted Mom or elderly Grandma?
MENTAL ILLNESS SHOULD NOT BE STIGMATIZED BUT NOT MINIMIZED EITHER
Mental illness is heartbreaking. It is chilling. It is especially sorrowful when it comes on over time, in the person's late teens or early 20s. I recall a room mate from college with schizophrenia who once was quirky but functional, but who began cutting off her hair, then screaming out of windows. She called me from the psychiatric hospital and explained that she was Dante's Beatrice. I remember another class mate who sat on a park bench and told me in anguished despair that he had found out his father was gay and was leaving the family. He talked strangely and stiltedly and didn't make sense. Later he wrote to me and asked me to visit him in another state. I agreed and wrote again. He responded that "Sister" had told him that he could not have visitors, and I looked up the return address: he was in a mental hospital.
Once I worked on behalf of a Soviet woman who was involved in dissent and wrongfully put in a psychiatric hospital and mistreated. Eventually, she was permitted to emigrate, and then I found myself drawn into her struggles with social services trying to provide her housing and food in this country. For my troubles, I got a letter from her in the mail one day with a large, dead cockroach -- the grandaddy water bug types. Wrapped around it was a handwritten note with a strange Aesopian comment about murder -- it was too psychological to call the police about, but pretty convincing evidence that the woman was in fact mentally ill.
There's a huge effort to de-stigmatize mental illness, but it some of it trends to the loony, i.e. zealous followers of Thomas Szasz. We are supposed to accept that people who are profoundly chilling, difficult, and even ominous in their behaviour are simply different and we should just accommodate them. No one in these zealous movements ever explains why we can't be accommodated, too.
One of the features of the movement against psychiatric abuse in the Soviet Union, in which I was an active participant, was that the advocates tried to discount any indication that the people on whose behalf they were fighting were in fact mentally ill. Some grew completely adverse to looking at the facts of obvious mental illness. But as I found personally in working on a number of cases, there were people who did require psychiatric treatment, and a very few that even required confinement. Even so, the majority of people put in psychiatric hospitals for dissent, particularly the maximum-security special psychiatric hospitals, should not have been in them.
I find a similar dynamic is occuring with the issue of Asperger's/autism and the nexus of violent video games and guns and other factors we don't know yet that led to the Newtown massacre. There is a wall of denial that there could be any intersection among these conditions and circumstances and that is irrational to me as I will explain.
WHAT IF ADAM LANZA IS CONNECTED TO ASPERGER'S AND VIOLENT VIDEO GAMES?
If we found out definitively that Adam Lanza had Asperger's/autism diagnosis administered by a competent and recognized medical professional; if we found out that he may have co-morbid some other mental illness like depression; if we found out that his playing of violent video games and participation in violent and extreme Internet fora or RP games were factors that led to his killing 27 people, what should we do?
Well, see above for my remedies, and see above for the things I would stay away from. Specifically, it would mean that those parents who have children on the autism spectrum should monitor more closely how much they are allowing their children to be babysat by violent video games and the Internet, and interact with them in person more. They should restrict their exposure to violent media and play with their own children and interactive with them more themselves, or seek help in their care. Families that have violent mentally ill children should be able to get care for them, especially more long-term care that doesn't turf them out of ERs after 24 hours, with powerful psychotropic drugs that may cause worse effects. And no one in such families should have guns in the house. Hey, can we do that much without upsetting your apple-cart?
Now I want to explain what I think are the reasons for this powerful denial and aggressive pushback: hero-parents.
I've known at least a half dozen hero-parents myself very well, and have seen and read about many more. These are the kind of parents that do everything for their child, once they have a diagnosis -- indeed, they are very aggressive in being advocates for their children in sometimes. I've seen parents give up careers, or completely minimize their normal life for themselves to care for their autistic children. They cart them around to the numerous doctor's and social worker's appointments; they fight with insurance companies; they homeschool them and endlessly devise occupations and activities for them; they struggle to get others to respect and understand them and their children; they try to get their children treated as normal children with mainstreaming; they fight and struggle all the livelong day, sometimes with dramatic results, saving children who had been given up for being profoundly autistic, and enabling them to complete school.
Often, they perform these heroic measures even as their own marriages break up, or they lose their jobs.
Sometimes when I watch these hero-parents, I think that a strange kind of fetal resorption takes place when their child with the "pervasive developmental disorder" is born -- they lose their own lives, they give up their own selves and personalities, and they become utterly, wholely, selflessly devoted to their child, like a diminished twin.
Except not all of them are heroes, and that's why we're even having this converation. The media and the Aspies lobbying groups are so gripped with the hero-parent narrative; they are so focused on the selfless, undying devotion of those bearing the brunt of care, that they can't absorb any other nuances or conflicts in this picture. Liza Long, the mother who wrote about her violent son says she wishes she could throttle him sometimes over his obnoxious repetitive behaviour, and suddenly, she's a bad mother who should be locked up herself.
The hero-parent himself or herself is also the one most vested in reconstructing the narrative of harsh difficulty into one that seems almost joyful or even utopian. The news media is telling us a story of a 20-year-old an Asperberger's patient described as such by a former school official and neighbors, who has taken his troubled single mother's guns and killed her, 6 other adults, and 20 school children. But then in a blog post the father of an 11-year-old autistic child who devotes every possible moment to his son's extensive care angrily tells us not to associate Asperger's with violence -- because his son is cute, and not violent, and can teach us a lot about life.
Could he at least admit that there is a 10-year difference between his son's case and Adam Lanza's case, and maybe things don't turn out for everybody when they grow up? Autism is new; it's about 20 years since we saw the first celebratory books about it and the diagnoses began to increase 1,000 percent.
So now we are being treated to a barrage of statements instructing us to stop characterizing Asperger's as mental illness; stop linking it to violence; stop stigmatizing bad behaviour; and stop doing anything at all except to empathize more and give more donations and buy more inspiring books.
YES, ASPERGER'S PATIENTS DO COMMIT VIOLENCE SOMETIMES
Yet there are cases of persons with Asperger's syndrome and/or autism spectrum disorders who commit violence, such as the cases here, here and here , and acknowledgement of the connection on autism help sites such as this one and in the scientific literature discussed here and here.
I know 20 sets of parents who are likely finding this link between autism and violence to be horrifically acute.
There are three major reasons why I think this linkage *is* occuring -- and that we should not be heeding only those in denial about it but keep an open mind and keep debating and keep researching and admitting connections where see them:
1. Non-hero parents. These parents aren't heroes, because not everyone can be. Not every story is like the Reader's Digest articles and uplifting Good Reads bookshelf. Sometimes the parents have mental illness themselves, as has been discovered with autistic children. Sometimes they develop alcoholism or drug addiction due to the pain and struggle of caring for these children. Sometimes the father or even the mother leaves the family and leaves the other spouse to cope with the child alone, or other relatives end up having to take care of the child as the parents are unable to, or are in jail.
The daily drain of caring for demanding, obnoxious, difficult, and even violent and threatening children is not something that people who have not experienced can really appreciate. Often those non-exposed to mental health issues simply think that the parents are lax in discipline, or should be stricter in their routines. Or they should have vitamins or other exotic therapies. But the parents who are the most unforgiving are the hero-parents -- understandably. They became heroes at great expense to their own lives and selves. They don't want to tolerate the others being slackers -- it gives them a bad name.
2. Comorbidity of Asperger's with other syndromes. One thing that anyone who studies mental illness in children rapidly finds is that they often suffer from multiple diseases. Oppositional defiance disorder can go with bipolarity; bipolarity can also have obsessive compulsive disorder, and so on. These states can be fluid in growing children. Asperger's patients also can have comorbidity of OCD or depression, but worst of all they can have conduct disorder, the most deadly of the disorders to be diagnosed in children and the one with usual nowhere else to go but prison as it has no cure and medication doesn't work very well. The percentage of people with this condition in the population is low; the percentage of Asperger/autism appears to be growing, however, by some accounts by huge exponentials, and CD is growing, too. There might be a very low percentage of individuals who combine both these conditions -- but the place where they may in fact meet is in the school shooter or public shooter.
3. Violent movies, violent video games, online fora, MMORPGs. Adam Lanza played Call of Duty; James Holmes didn't only play Guitar Hero despite claims from the deniers.
One place we see Asperger's/autism, war games and computer hacking come together is in some of the cases of the Anonymous figures who have been arrested and sentenced such as Gary McKinnon and Ryan Cleary. They have escaped prison and have been put in some kind of probation and care because they were able to invoke their condition as Asperger's patients. Given the serious nature of McKinnon's deliberate offenses, the many years after his initial arrest when the diagnosis was made in order to forestall extradition to the US, and the media and celebrity circus, I am skeptical.
Those in the Second Life community know about Asperger's because of the high prevalence of Aspies and Aspie groups there, some of them fiercely antagonistic to anyone who sees them as anything but evolved indigo children. The hacker and coder community in general has a higher prevalence of those on the autism spectrum, and they tend to show up in large open source projects like this. Some of them tend to the criminal kind of hacking and griefing; they can be horribly manipulative in covering up their tracks.
THE RED THREAD
Does this mean that all geeks or all Asperger's patients or all Anonymous anarchists are going to be school shooters, or should be locked up, or stigmatized and shunned?
Of course not -- see above for my remedies and for my criteria and for my list of things to avoid.
But some of the Asperger's patients who play violent video games, who hack websites for Anonymous, who script in Second Life are part of a violent, nihilistic and dysfunctional culture that does make it possible for some people to turn to real-life violence. And I believe with all my heart that it's okay to say that; and I believe with all my heart that it's more than fine to express alarm about this.
The figure of Barrett Brown, the drug-addicted and mentally unstable young man who is now in jail on charges of fraud and computer hacking, who got his start in Second Life and who threatened an FBI agent with violent reprisals -- adding to the charges against him -- is one such obvious case. There are others.
For me, there's a red thread that runs from my earliest experiences of Anonymous eight years ago in Second Life and their vicious, violent and threatening harrassment of me for years merely because I reported on them, eventually, through the events of our time, all the way to the massacres in Colorado and Connecticut. That isn't to suggest a conspiracy; it's to demand consciousness.
I thought the task when I first saw this incipient totalitarian-style movement in Second Life was merely to respond to it within that virtual world, either virtually or on blogs. I was even startled to find that it seemed to creep out to real life. Then I found that it was in real-life precisely because it wasn't originating only in Second Life, but only took a concentrated form there, and came from other sources ranging from Silicon Valley cults of open source software and various other psychological cults and war gaming MMORPGs to the Internet fora of 4chan and today Redditt, Fark and others.
Today, there is a little bit of this culture in almost everything these days; there is a lot of it in some places where we have to spend a lot of our online time in particular. When this author talked about the malignancy in American life, she spoke of the acceleration of social media and amplification of the Internet in the last five years, as the shootings have increased. I agree. It's related.
Some older people find explanation for these things in the military-industrial complex, American imperialism, the religious right, oil companies. To them, I say Port Huron is calling, they want their 50-year-old manifesto back, it's in tatters. Others find the explanation in the break-up of the classic family, the diminishment of religion in public and private life; gay rights; women working. To them I say, the future is calling, and you're not in it. And that's why I explain these things another way: it's about the Internet. And the Internet is something we can change.
Some people hate it when you make moral judgements about culture. They want culture to be forever exempt from responsibility for anything negative. They want culture wars to finish: right now! Because 51 percent of them won the elections and the other 49% didn't! They want only "empirical evidence" or "successfully prosecuted cases" or "scientific double-blind studies" to prove something is connected or linked.
But culture is a substrate. It's a milieu. It may not yield up those precise data or cases or studies that the purists (and deniers) demand. And culture isn't just what some groups in society say it has to be, whether hedonists or Puritans; there is civilization, and the rule of law, and human rights.
And this is why I come back to the remedies -- which have to do with admitting problems where they exist and developing reasonable responses. The nexus of autism spectrum, violent video games, and guns does appear, even if rarely -- and with deadly and sorrowful consequences for years to come. When something is that horrible, it must be addressed. The responses need not be punitive which would be counterproductive, but they do need to be effective and the myths have to be punctured.
The first myth that has to go is that all parents taking care of autism patients are heroes. They aren't. They can't be. That's why some don't get proper care and deteriorate. Society has to help. And that help has to include longer-term psychiatric confinement.
The second myth is that violent video games and the nihilistic Internet culture have no effect on young people's consciousness, especially those on the autism spectrum; they do. The solution does not have to involve repealing the First Amendment or replacing it with politically-correct codes such as the speech codes on campuses or in workplaces (which in my view have only served to drive the formation of a more violent, misogynist, racist and nihilist Internet culture). The solution does not involve censorship, suppression of sales, confiscation. It involves rather debate, creation of other alternatives, more meaningful and compelling forms of culture for young people.
The third myth is that guns are irrelevant and shouldn't be controlled. I think there is one thing that is for certain, regardless of these debates: people on the autism spectrum should not have access to guns. Those who care for them have to make sure that they don't, and keep them out of their homes and workplaces.