Sometimes interpersonal relationships can be difficult when one person requires a lot more than another person is able to give. Autistic people have been described as being "in their own world". My sister has said this very thing about me.
Before I met my wife, I had a number of failed relationships, mostly because of communication issues between me and my partner. However, the failed ones weren't always caused by my failure to communicate. Sometimes the relationships failed because I felt the need to control the other person. I don't mean control in a physical sense but more in a psychological sense. I had the need to control how that person felt about me and if I was really infatuated with them, I would "test" their love for me because I had this need to constantly receive reassurance that they did indeed like me as much as I liked them. At other times, my partner felt as though they had to constantly test me in the same way I had the need to test others.
When I turned 30, I finally figured this pattern out. I had this history of unhealthy relationships and one day it all just crystallized for me. Life and relationships are a series of interpersonal compromises. I had been attracted to women from a purely physical presentation. Whenever I dated, I was either pretending to be someone I wasn't or they were someone that wasn't healthy for me. So one day, after many years of solitude, I asked someone out that I thought would be good for me but this time, I decided to date someone I really would have had no interest in otherwise. She was bright, well educated and came from a background of struggle (much like me but much different than what I was normally attracted to).
Because I made the choice, to go outside my comfort zone, I married a woman that allows me to be myself, completely. She has never put a demand on me that I felt was unfair. She has never asked me to talk about things when I wasn't feeling up to it. And most important of all to me was she allowed me the solitude I need at times, with no "strings attached".
Many times, people are suspicious of someone that needs solitude and silence at points in their lives. The freedom to be alone at times is very important for me as this is when I can collect my thoughts the best and when things "crystallize" for me. But, for some reason, some people are very suspicious of this need and believe that there are other reasons for it other than what it is, a need for solitude. I believe autistic people do best, at least this one does, when their partner can recognize this need and still feel secure in their relationship.
The recognition for the need of solitude also extends to parents as well. I understand that there will be times when my son will not want to be around me but may want to be by himself and I don't worry about this nor see it as a sign of "regression". There are times when we need to be alone, and it is during this time that we can process our thoughts without distraction. When we are ready, we'll be back, refreshed and ready to exchange.
Below are some of my favorite quotes about solitude. Whenever you feel frustrated about an autistic person in your life, try to remember some of these quotes, which capture in beautiful words the inherent human need for solitude.
"What commentary on civilization, when being alone is being suspect; when one has to apologize for it, make excuses, hide the fact that one practices it, like a secret vice."
"Language has created the word 'loneliness' to express the pain of being alone, and it has created the word 'solitude' to express the GLORY of being alone."
"Solitude shows us what should be; society shows us what we are."
"I never found a companion that was so companionable as solitude. We are for the most part more lonely when we go abroad among men than when we stay in our chambers."
"If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music he hears, however measured, or far away."
"Inside myself is a place where I live all alone, and that's where I renew my springs that never dry up."
Written by Ed from Eds autism page
Thanks to CS for allowing me to post here.
One of the ways that many people who hold political high-ranking offices within the United States are found out as behaving inappropriately is by the way they are divided into groups. The two major current political parties or groups in the United States are Republicans and Democrats. The way that we (the public) know that Republicans are behaving inappropriately is because Democrats reported or make sure that it gets reported. The way that we (the public) know this about Democrats is because Republicans make sure of it. Without this competition how would we know?
But not all politics are divided this way. The reason that some violations of public officials who aren't a part of the Republican/Democrat system are hidden from the public for a longer period of time is because those who set regulations and are thought by the public to be enforcing those regulations choose to conveniently ignore or look the other way. They also often knowingly contribute to the problem and are in positions to set and enforce regulations for the very purpose of protecting the violations and the violators within their same (or a similar) branch of government.
Many who do this don't start out this way at all. First they must be tested by a particular branch of state or federal government to see whether or not they're willing to "play along" and accept the rewards of being a team player and move beyond (what is then considered) the naïve fulfillment of the responsibilities for which they may have been interested in when they entered the field.
The transition from being governed to being in charge of governing others seems to keep many in positions of being over governed (and given little if any opportunity to voice their view) which I see as contributing to an ugly and seemingly unending cycle of abuse.
I often hear typical standards for the responsibilities of adulthood described as this: At around 18 years of age a child/young adult is expected to move from their home and work towards securing an education job status and family. My view of how this becomes a standardized test is that the biggest barrier in securing this for many children/young adults is the abrupt, disconnected, over simplistic, unrealistic, and irresponsible nature of how the standard makers and enforcers operate. When kids don't make the shift early enough from knowing they will be trained to seeking training the whole system of these expectations and standards crumbles. No matter who people see as the victims of this system I rarely hear anyone say that this system isn't broken.
Maturity and responsibility are often discouraged by society because it's more convenient than encouragement and this becomes a very expensive habit.
Whether authority comes from parents, teachers, or someone who is granted this authority by the public, what should be responsibility is too often seen as entitlement. Direction and guidance too often becomes unnecessary control and manipulation when regulators don't get regulated.
What happens is we have generations of people within all age groups who were given few opportunities to take responsibility and learn the benefits of that responsibility getting treated for what they're doing wrong for so long and in such intense unnecessary ways that they never have the opportunity to see the benefits of what they can positively express.
When every behavior is seen as an emotional response and gets critiqued as unsophisticated, populations of people have their values made obsolete. If on the other hand behavior is seen as the result of a mental or spiritual defect it may become more convenient to dismiss that very same population of people as deserving of being ignored and other more severe types of punishment. The result is the same. They are branded inconvenient and ultimately obsolete.
Belittling Our Experiences and Silencing Our Voice by the Use of Terminology we are not familiar with.
I've noticed that oppressed groups are often taught that they do not and cannot understand the sophisticated language of their oppressors. I've seen that often when people were taught that something is beyond their capacity for learning they don't put many efforts into finding out whether this is true or not. Sometimes people's liberation is really not as far away as they are taught. I have also noticed that people who are caught up in the oppression of others sometimes have little understanding of what they do and how it is oppressive because their scope of understanding is limited to a realm where oppressed populations are not allowed to express their experience.
The places where I know this dynamics to be very true are within mental health agencies and institutions that accept funding from state and federal resources. The understanding of this dynamic begins with the acceptance that the US Mental Health System was never intended to provide for the needs of its consumers. It was designed to meet the needs of the public. It is a type of corrections Department where punishment is the primary method of enforcing behavioral standards.
I am writing here for the expeditious benefit of those people who do not require an explanation or proof that this is the case.
This is some of my experience
I have been in many mental institutions throughout my lifetime and have experienced as well as seen many atrocities. My first documented major period of regression began in 1974 when I was 11 years old, and it lasted for two years. I was not able to attend school during almost all of that time. My treatment included behavior modification by a specialist who worked with autistic people. What I have learned about behavioral psychology (including what I consider the worst aspects of it) is something that I see as playing a major role in all of what has been considered modern psychology throughout my lifetime.
I began taking psychiatric medication at age 11 and continue today to take these medications mainly as a result of how I have been given massive doses of ugly old anti psychotics (not because I ever needed them but because they are used in such places on everyone for restraint purposes to prevent problems and not because of them) along with receiving ECT treatments in places and at times when it was the treatment de jure. Such things cause interference with how the body uses dopamine (my neurologist recently told me) and are eventually just prescribed to people like me to prevent the pain and other problems that result from stopping them. People (me included) are expected to stay on them for life.
I think it's also important to remember here that along with other populations of people that were considered more disposable, autistics were tested with LSD during the early experimental phases of testing the drug. My experience with being tested for safety (efficiency is hardly an issue in such testing) of other medications is that there are few restrictions for how much of these medicines are given in cases where those who receive them are seen as the least likely to recover and the least likely to tell about the inappropriate ways they are treated.
It's also important to remember that the current estimate is that people who use psychotropic medication are seen as dying 25 years younger than other people. My experience is that most die even earlier of health issues related to these drugs. Very few advancements are made in reducing the side effects of the drugs as compared to medicines that treat more popular populations of people.
I believe behavior is seen as the cause of (or what needs fixing in regards to) learning disabilities, psychological and psychiatric problems, and certainly many neurological problems as well. I believe that one of the main reasons that autistics are treated more severely within all these classifications (which I have been described having all of them at different times since birth) has a lot to do with how what is all too quickly determined as misbehavior is treated with the worst forms of punishment. In a typical institutional environment, I think autistics are the least adaptable to these harsh environments which can lead to a cycle of gross misunderstandings and the worst kinds of treatment.
Rather than referring to the critical nature of how any type of behavioral treatment for autistics is being overly generalized and ambiguous, I believe there it is instead more of a problem that there is an over generalization of how autistics are seen as well as a bigger problem with how really bad punishments result from peoples lack of willingness to understand.
My experience has been that this is worse in (what I call) mental warehouses where everyone gets treated in the worst way, and is given the least opportunity to express any of their needs (the most of which is often protection), and is discouraged in the most extreme ways from even seeing or referring to themselves in anyway as targets of abuse when that challenges the authority of where they are or the staff there.
I have chosen some parts of the following articles that best represent my points. I have also made personal comments that I thought relevant. My comments are in bold.
It's likely that the staff was trained to see such expressions as over reacting or "faking it" and so they ignore what they would claim was inappropriate behavior. I have often seen people much sicker than was thought be ignored by staff.
In addition, the organization said, hospital staff falsified Green’s records to cover up the time she had lain there without assistance.
People have to be trained to hide what is relevant to an investigation which to me means that they knew how and that they probably had done such things before....but ooops, someone must have forgot about the camera.
The hospital, the suit alleges, lacks "the minimal requirements of basic cleanliness, space, privacy, and personal hygiene that are constitutionally guaranteed even to convicted felons."
I've often heard it said by fellow patients within state mental institutions where I've been that jail is better. Mental patients don't need to be seen as bad or wrong in order to be punished because it's already assumed that our behavior is the result of a defect. Our need for punishment doesn't need to be justified as anything more than routinely necessary to deal with people who can't do any better. No outside sources have ever asked me or anyone that I know inside of one of these hospitals what the conditions were like a weather abuse was happening.
If someone is released they often very quickly learn that outside sources that are said to listen to reports of abuse are paid for silence and talk to discourage, intimidate, and ignore if possible, any reporters that they see.
Continually failing to address hospital fatalities and violence, the letter said, caused similar deaths to multiply and left patients vulnerable to sexual assaults and other attacks.
Federal investigators, the letter said, found that medical and nursing care "substantially depart from generally accepted professional standards." They also determined that the hospital provides inadequate psychiatric treatment; uses seclusion and restraint, including sedatives, inappropriately; and fails to "adequately protect its patients from harm."
"The harm," the letter said, "can be fatal."
Seclusion, restraint, and sedatives are often linked to fatalities both investigated and uninvestigated as well as often being justified as necessary. I rarely if ever see staff in places as bad as this accept the responsibility of looking for other options and spend most of their time putting out fires that they are involved in starting by either aggression or neglect .
The department's letter, obtained Wednesday by The Atlanta Journal-Constitution, resulted from an investigation that began in April 2007. The inquiry's findings - unnecessary patient deaths, abuse by staff members, uncontrolled fighting among patients, overuse of medications, poor planning for patient care after discharge, shoddy or nonexistent investigations of serious incidents - echo a series of articles in the Journal-Constitution, "A Hidden Shame," published in 2007.
The newspaper reported that at least 136 patients died under suspicious circumstances at the seven state hospitals from 2002 through late 2007. In addition, the newspaper said, state officials substantiated nearly 200 cases of patient abuse by hospital employees during that period.
136 patients died under suspicious circumstances and in addition to hundred cases of patient abuse by hospital employees.... In five years.... Once it is seen how much effort is actually put into looking for this abuse it's hard to see how this much smoke would not indicate a much bigger fire.
Investigators said they found "troubling patterns" of patient aggression on adolescent and adult units: repeat victims, repeat assailants, multiple assailants ganging up on a single victim. Assaults frequently caused serious injuries that required emergency room treatment, the letter said, including broken bones and head wounds.
"The repeated and significant level of violence on the units suggests a fundamental failure to address the root causes of patients' aggression," the letter said, "and demonstrates a failure to intervene adequately to prevent future incidents."
In many cases, investigators found, hospital officials simply don't investigate incidents - or, if they do, they conduct woefully inadequate inquiries.
Most cases is probably more accurate.
AND
The hospital failed to react when staff mistakes resulted in patient deaths, the letter said.
It cited the February 2006 death of Sarah Elizabeth Crider, a 14-year-old Cobb County girl whose case was highlighted in a Journal-Constitution article. The day before she died, the letter said, Crider complained of stomach pain and had nausea and vomiting.
Most rather than many anti psychotic medications have this side effect.
Three days later, the letter said, a 33-year-old patient died at the same hospital after his "medical concerns were mishandled," including the failure to monitor his bowel functions. And that December, 59-year-old Michael Webb died after more than two weeks without a bowel movement - information never flagged on his medical chart, the letter said.
Since an enema is considered medicine, a nurse must "administer" it which can discourage some patients from asking. Administering them when asked is whats called "monitoring."
The hospital's staff, investigators found, "often fail to provide even the most basic care, opting instead for a reactive approach in which patients' medical needs are addressed only after problems develop."
Uh huh.
Investigators said they found "troubling patterns" of patient aggression on adolescent and adult units: repeat victims, repeat assailants, multiple assailants ganging up on a single victim. Assaults frequently caused serious injuries that required emergency room treatment, the letter said, including broken bones and head wounds.
"The repeated and significant level of violence on the units suggests a fundamental failure to address the root causes of patients' aggression," the letter said, "and demonstrates a failure to intervene adequately to prevent future incidents.
"In many cases, investigators found, hospital officials simply don't investigate incidents - or, if they do, they conduct woefully inadequate inquiries.
Uh huh.
In one case, investigators found documents had been removed from the medical file of a patient who had attempted suicide. The documents described irregularities in the patient's care: Staff members had failed to watch the woman as a doctor had ordered, and one had gotten into a shouting match with the patient shortly before the suicide attempt.
Removed documents from yet ANOTHER facility.
Removing the documents from the file was "highly irregular," the Justice Department letter said. "Equally disconcerting," the letter added, was hospital officials' failure to investigate why the documents were removed.
Highly irregular huh? I imagine it's not in the employee handbook.
Repeatedly, investigators documented situations in which hospital employees violated standard procedures. They cited the case of a patient who has been admitted to Georgia Regional 107 times; her treatment plan has rarely varied, and no one has assessed why she repeatedly returned to the hospital.
107 times the woman was readmitted. At least the justice department knows what is Highly irregular. :0
"Patients routinely are discharged to places such as homeless shelters, motels and bus stops, the letter said, noting that the U.S. Supreme Court ruled in a 1999 case that shelters, for instance, were "inappropriate.discharge locations."
The hospital offered assurances about its treatment of its patients, both those youths placed in DCFS custody after being abused or neglected and patients with violent histories and mental problems.
and:
In all, records indicate at least 10 mentally disabled children were assaulted at Riveredge during the last three years, six by other youths and four by adults.
In one 2007 incident, an alleged rape of a 19-year-old by another teen in a bathroom was not reported to police and the alleged victim was not treated, even though workers found drops of blood in the bathroom.
and
According to government records, the attacker allegedly raped the same victim again the next day.
whom should she tell? whom might she believe is listening?
Attorney General Beau Biden said DPC failed to prevent physical and emotional abuse of patients by employees and other patients, failed to correctly use chemical and physical restraints, neglected patiens and used "unjustifiable force" against patients, in addition to other violations.
In July 2007, DPC patient Preston Hudson's jaw was broken on both sides of his face. Hudson told his family that two attendants had attacked him.
My experience has been that very few people who are highly regarded in society as living in civilized environments have any idea what degree of extreme abuse is routinely described as "justifiable force."
This is a project I am putting together to recreate the circumstances of Vincent Milletich's death. Various state governments have a 30 year unsuccessful track record of shutting down The Judge Rotenberg Center. I intend to use the final video along with written evidence of why I believe international pressure is necessary to shut down JRC. Final film copy along with documented abuses will be submitted to Amnesty International for it's consideration to take on JRC.
I have begun to order materials and props to recreate Vincent's death. The project will be well documented using press accounts and court records showing the last minutes of Vincent's life. If you have any information that you feel is pertinent to this project please contact me. My email is listed in the about section.
Update:
I thought I would post young master Matt Brodhead's defense of the Judge Rotenberg Center. You can find it here. Also, JRC's destroying of probable incriminating evidence in a law enforcement investigation found here.
According to his profile, Matt is a 1st year graduate student studying Behavior Analysis at Western Michigan University.
You may ask why I would link to a blog post that I might find offensive by its very nature (supporting extreme physical aversives against children). I post it because I think Matt's view of JRC is exactly what Matthew Israel's extensive propaganda machine conveys to the public and contradictory information about the ethics and honesty of clinicians working at JRC, which there is ample evidence of here, and here, is not persuasive for a 1st year grad student in Behavior Analysis. Matt's post could easily be confused for a PR release for JRC. I don't think Matt is alone in his views nor necessarily in the minority of behavior analysts.
Interesting discussion over on Michelle Dawson's TMob website. This was recently posted about Matthew Israel.
I mainly read here and seldom write.
My name is Sharon and I'm from Israel.
We had a visit here of Dr Matthew Israel last week. Apparently it was a private visit but the local ABA community here could not resist it and invited Dr Israel to lecture about JRC's methodology. The lecture took place at the Zisnman College for Physical Education & Sports within the Wingate Institute and it was organized by the Center for Behavior Analysis in the college together with the Israeli association for ABA.
The invitation/brochure to the lecture presents JRC as using "full implementation of ABA science" with "direct" and "exact" teaching to "help people in high risk".
About Dr Israel it is said that he has "deep knowledge of the ethical, clinical and legal aspects of the issue in North America".
The lecture and the way Dr Israel was presented in front of educators etc. here in Israel are now the subject of letters exchange and criticism here.
Prior to this, the secretary of the local behaviorists association here in Israel, Mr. Michael Ben-Zvi, has been scheduled to take part in the first conference to be held here in Israel by the Israeli autistic selp-advocacy group.
Because Dr. Israel's lecture has been coordinated by the local behaviorists association and after Mr. Ben-Zvi did not express any rejection of JRC's methods and after a letter from Dr Eitan Eldar (head of the ABA program in the Zisman College) failed to do the same thing the Israeli selp-advocacy organization ACI informed Mr. Ben-Zvi that his participation is ACI's (Autistic Community of Israel) symposium (to be held at July the 23rd in Raanana ) is canceled.
Prior to Dr. Israel's lecture (in the Zisman College) the Israeli web site "Special Place" which advertised the lecture in its on-line board decided to take it off after it received information regarding JRC's methodologies.
The Israeli national autism society, Alut, still has not responded to a letter concerning the publication of Dr. Israel's lecture by its family support center (Bet-Loren).
Matthew Israel really isn't out of the mainstream of ABA, he's right there in the thick of it.
I'm not a religious person, despite the internet name many people know me as (christschool). I'm agnostic, meaning in my case that I don't know if there is a God or not. I'm equally repelled by dogmatic religion and atheism. Both seem illogical to me. One that subscribes to a certain text as the truth about the existence of God and one that says there is no God. However, I'm not anti-religious as long as religion is kept in the personal realm. If I were to choose a religion, I'd probably choose to be a Buddhist.
There is an eastern concept shared between Hindu, Jain, Sikh and Buddhist philosophies called Karma. Karma is the concept of "action" or "deed" understood as that which causes the entire cycle of cause and effect. The law of Karma states: "The effects of all deeds actively create past, present, and future experiences, thus making one responsible for one's own life, and the pain and joy it brings to him/her and others." Similar along the lines of the "love you give is equal to the love you make" to borrow from the Beatles.
The Karma Police Gallery Exhibit in Video If you have problems viewing the video, try going here.
I find this concept of Karma interesting: Actions do not create karma (good or bad) when performed by an individual in the state of 'Moksha' or liberation. An ancient philosopher named Adi Shankara taught "Akarmaiva Moksha," which means Moksha (a state of liberation of the consciousness from all the suffering of a worldly existence) can be attained only by doing, not by a process of effort. All actions performed by one in the state of Mokshare are called Dharma (a righteous duty).
This is the original version of Radiohead's song "Karma Police". The original lyrics include these lines:
Karma police, arrest this man
he talks in maths,
he buzzes like a fridge
he's like a detuned radio
Karma police arrest this girl
she stares at me as if she
owns the world
and we have crashed her party
this is what you'll get
this is what you'll get
this is what you'll get
when you mess with us
Karma police, I've given all I can
its not enough
I've given all I can but
we're still on the payroll
phew...for a minute there
I lost myself
I lost myself
Many people think the lyrics mean "what comes around goes around, or an eye for an eye". But I think the Karma police are the people who judge outsiders and single them out. A man who "talks in maths and buzzes like a fridge, like a detuned radio" is someone many people will not understand. The Karma police are the people who make it impossible for those who don't fit a social construct of normality to be accepted. What this song does for me is take the ideas of social exclusivity and the concept of outsiders and tries to show how it divides and hurts society and the people in it.
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