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SCHAFER AUTISM REPORT “Healing Autism:
No Finer a Cause on the Planet”
NOTE CALENDAR DEADLINE JUNE 25 FOR July UPDATE http://home.sprynet.com/~schafer/frm/calendar-form.htm
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Monday, June 16, 2003 Daily Vol. 7 No. 127
FORENSIC
* Children Ordered By Court To Have MMR Jab
PUBLIC HEALTH
* Mumps Outbreak Fear As Single Jab Runs Out in Scotland
* Why Are Doctors Still Injecting Our Kids With Poison?
RESEARCH - Aspergers
* Some Dynamics of Reading (And Not Reading) Faces
* “Like Speaking A Foreign Language In Ones Native Country”
* “Unfortunately, If I Speak Out About Something, I Am Often
Misunderstood”
* “With The Right Interventions. . .”
FORENSIC
Children Ordered By Court To Have MMR Jab
[From Richard Miles, who regularly contributes material from the UK to the Schafer Autism Report: This story is in every British National newspaper today and received top coverage in the television media. The Daily Telegraph has perhaps the most coverage and this is one of several articles in today's edition. It has some very useful links to other reports in this edition as well as links to previous articles. To get them, go directly to this article and the other links, click directly on the URL at the top of this page. Well done to Jackie Fletcher, Isobell Thomas,Martin Hewitt on the TV, as well as Phillip Gibbs on the radio. Article By Richard Alleyne.] http://www.dailytelegraph.co.uk/news/main.jhtml?xml=/news/2003/06/14/nmmr14.
xml&sSheet=/news/2003/06/14/ixnewstop.html
Two girls must be given the MMR vaccine despite the vehement opposition of their mothers, the High Court ordered yesterday.
Mr Justice Sumner told the women, one of whom is a trainee midwife, that it was in the best interests of their children, aged four and 10, that they be immunised.
He dismissed evidence of possible links between the vaccine and autism and bowel disease, ruling that the benefits of the vaccination outweighed the risk of the diseases they were designed to prevent.
He also ruled that the combined triple vaccination held fewer risks than administering three separate injections for measles, mumps and rubella.
His conclusions, a considerable boost to the Government's stance on the MMR vaccine, were also a victory for the fathers of the two girls.
The men, one of whom is divorced from the mother of his child and the other separated, had gone to court to force the women to give the children a number of vaccinations including MMR.
Mr Justice Sumner said that, ordinarily, it was up to parents to decide whether or not their children were immunised, but because they held opposing views, he had to do what he considered best for the children.
“Recognising the anxieties of the mothers, and that an adverse decision will be upsetting, the children's best interests are served by receiving a programme of immunisations and an order should be made,” he said.
“The court declares that immunisation, to the extent set out, is in these girls' best interest and should prevail over their mothers' opposition.”
Mr Justice Sumner, who refused leave to appeal, said he was aware that a civil trial was pending next April involving the parents of children who claim the MMR jab was linked to autism.
He said his ruling should not be seen as a general approval of immunisation for children. “It does not mean that at another hearing a different decision might not be reached on the facts of that case,” he said.
The ruling, thought to be the first time a court has intervened on the issue of MMR, received a mixed reaction.
While the Government, doctors and medical groups welcomed the decision, those opposing the MMR jab said it was unnecessary meddling by the courts.
A spokesman for the British Medical Association said: “We welcome the clarification of this ruling as we are sure it will be useful to our members.”
The Department of Health said the ruling reinforced its view that there were no proven links between MMR and autism.
“MMR remains the best way of protecting your child from measles, mumps and rubella,” a spokesman said. “There never has been evidence of a link between MMR and autism.
“The department's priority is to give accurate information to parents that explains the real benefits of MMR, and describes for them the very few risks that could occur.”
Dr Evan Harris MP, the Liberal Democrats' health spokesman, said: “It is right that the courts should decide based on the best interests of the children concerned.
In a statement last night one of the mothers said: “I think this ruling is an outrage. To date, vaccination has not been compulsory in Britain. Another freedom is being eroded.
“This effectively means that any parent, indeed anybody can launch a complaint against you, saying they don't like your beliefs, and want your child protected from your beliefs.
“Who is willing to take responsibility if something terrible happens? Not the judge, nor the vaccination company, not the doctor injecting my child, and surely not the father.
“It's outrageous that, in a free society, a judge could make such a decision. We are going to appeal.”
Ann Coote, a founder member of Justice, Awareness and Basic Support (JABS), which campaigns for parental choice over vaccines, said it was wrong that a court should have precedence over the family.
She said: “We don't think it should be up to a judge to decide matters like this. It should be the parents.
“It is a real shame that the parents could not have sat down with a doctor and come to agreement. It is also a real shame they did not have the choice of the single jabs.
“Now if anything happens to these children as a result of the vaccines, the judge will be held responsible.”
In addition to the unproven link between MMR and autism, the court would have weighed up the risks of the known side-effects of MMR and other vaccines. These include rashes, fever, nausea and joint pain.
© Copyright of Telegraph Group Limited 2003.
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* * *
Courts Cannot Force Families To Take This MMR Gamble
[From The Mail on Sunday, UK. No URL reference available at posting time.]
It is a medical gamble, which has still not been cleared of the suspicion that it may cause regressive autism.
The law should not force people to have injections. There may be times when judges are right to permit life-saving blood transfusions against the wishes of parents whose religious beliefs forbid such things. But the MMR is not an emergency treatment.
There were plenty of things wrong with the conduct of this case. At least one of the mothers seems not even to have known it was going on. But the root of it is the Government's concrete-headed refusal to allow parents a choice between MMR and single vaccinations. If the single jabs were readily available, the matter need never have come to court.
Without the positive agreement of both parents, the immunisation should not be given. When a family is divided down the middle and the safety of the dose is disputed, the law must support the status quo rather than override the honest doubt of citizens. This is even more so when one of the children involved, aged 12, does not want to be injected and will presumably have to be held down by force while the deed is done - a creepy and totalitarian abuse of medicine.
* * *
CARE
Doctors 'Fudging' Autism Diagnosis in Australia
http://www.theage.com.au/articles/2003/06/15/1055615678581.html
Children are being falsely labelled as autistic so their parents can qualify for government funding, according to a report.
The GP newspaper Medical Observer Weekly says doctors are coming under pressure to diagnose autism spectrum disorder in children with a range of behaviour and learning difficulties so desperate parents can access assistance with care and schooling.
“If a case is borderline you're inclined to make the diagnosis because you're interested in helping the families,” Perth paediatrician John Wray told the paper.
“It's a very real problem.”
The report also quotes Gosford paediatrician Adam Buckmaster as saying that a parent with a “nightmare child” who had an intellectual disability, ADHD and other behaviour problems would not be eligible for government funding.
“Most paediatricians want to help the parents and if you can bend a little bit, most paediatricians will do that,” he said.
The incidence of autism spectrum disorder has shot up alarmingly in recent years and experts say they are unclear why this “epidemic” has occurred.
However according to some explanations the increase is the result of a loosening of diagnosis criteria.
Based on a recent study by researchers from the Children's Hospital at Westmead in Sydney, 17 Australian children are being diagnosed with autism each week.
Adrian Ford, CEO of the Autism Association of NSW, said diagnosis of autism was a complex task but he was not aware of any deliberate bending of the rules.
“I would certainly hope that's not the case,” he told AAP.
“It's important that the correct diagnosis is given so the child gets exactly the kind of help it requires.”
He said even when a diagnosis was made it did not mean a child received immediate help.
©2003 AAP
[Brief commentary: This doctor is charging that his colleagues are parties to fraud because they're such nice guys and just can't help themselves. Australia may have been a penal colony two hundred years ago, but could it be that some criminality still runs in the blood of their paediatricians and families with autism? Or could this be the case of a “guilt-ridden hysterical” doctor projecting “wild anecdotal claims” and drawing conclusions that have little or no basis in science? -- a charge public health officials like to make against pedestrian families with late onset autism who suspect vaccines. -LS]
* * *
PUBLIC HEALTH
Mumps Outbreak Fear As Single Jab Runs Out in Scotland
[Tom Curtis.] http://www.scotlandonsunday.com/health.cfm?id=660432003
The Scottish doctor who championed single vaccines for children has admitted he cannot protect his own daughter against mumps after supplies of the jab dried up.
Around 1,000 Scottish children will have to wait for months before getting the single mumps vaccine because worldwide stocks have been used up.
Peter Copp’s GP Plus practice in Edinburgh is the biggest single vaccine service in Edinburgh, but even he cannot get the pre-school booster mumps jab his four-year-old daughter is due for.
The pre-school booster is normally given as a triple vaccine but continuing parental fears over the MMR triple vaccine have contributed to the shortage of mumps single jabs.
Supporters of single vaccines fear there could be a serious outbreak of mumps, which is infectious and can cause long-term health damage, because so many children are not being vaccinated.
They accuse the authorities of deliberately dragging their feet over allowing new single vaccines into Britain because they do not want them to be widely available.
The news follows a controversial ruling in England in favour of two fathers who want their daughters to be given the MMR vaccine against the wishes of the children’s mothers.
Copp’s practice caters for parents who are worried about conflicting reports on the safety of the MMR vaccine, which combines immunisation for mumps, measles and rubella in one go.
He said: “There is plenty of single measles and single rubella vaccine, but we used our last single mumps vaccine about three weeks ago. The number of children waiting for it will increase by about 200 a month if the situation continues.”
Single mumps vaccine became scarce last year after the American company Merck stopped making its version. But until now doctors have been able to source small quantities of single vaccines from stockpiles in Europe.
Copp said: “Six months ago I was in a similar position, but I managed to find and import 1,500 doses stored around Poland. Now there is nothing. I ’ll keep looking but it could take months.”
Copp claimed last night that nothing appeared to have been done to check out another single mumps vaccine which is currently banned in the UK.
He said the Medicines Control Agency (MCA), which polices the use of drugs in Britain, had promised to investigate Pavivac.
Although Pavivac is widely used in Czechoslovakia, the Committee on the Safety of Medicines said last year it had doubts about its safety.
But Copp said he had been told by Sevapharma, the Czech company which makes Pavivac, that it had still not had any contact from the MCA.
Copp, who charges £320 for each course of three single-dose vaccines,
said: “I don’t have a problem with the company. What I do have a problem with is the Medicines Control Agency doing absolutely nothing about this.”
A spokeswoman for the MCA said: “There never has been evidence of a link between MMR and autism.
“The Department of Health’s advice remains that the best way to protect your child against these three diseases is through MMR.”
Asked about Pavivac, she said: “The position remains unchanged.”
John Garner, chairman of the Scottish council of the British Medical Association, said: “Our view is the same as that of the vast majority of medical experts: that MMR is the most effective and safest form of immunisation for children.”
* * *
Why Are Doctors Still Injecting Our Kids With Poison?
Dad's fury over mercury jabs
[By Marion Scott.] http://www.sundaymail.co.uk/news/content_objectid=13069994_method=full_sitei
d=86024_headline=-WHY-ARE-DOCTORS-STILL-INJECTING-OUR-KIDS-WITH-POISON%3F-na
me_page.html
Dad Don McKeen was delighted when Scotland's deputy health minister announced parents would be allowed to choose mercury-free jabs for their babies.
The move came after research suggested a link between the chemical - used to extend the shelf life of the diphtheria, tetanus and whooping cough vaccine (DTwP) - and autism in youngsters.
Don, 37, suffers from a mild form of autism and did not want to expose his three-month-old son Lewis to the additional risk of the vaccine, which contains high levels of mercury in the chemical preservative, Thiomersal.
But he was stunned to discover that, despite the pledges from the then health No.2, Frank McAveety, parents must fight for mercury-free jabs.
Sunday Mail investigators have discovered parents are struggling to persuade doctors to administer safer jabs - mercury-free Infanrix costs nearly double the old-style vaccine at almost £20 a shot.
The Scottish Executive insist cost is not an issue - but have now declared that it could be YEARS before the vaccine is replaced.
Last night, stunned Don, of Glasgow, demanded to know why doctors were still administering jabs containing poison. He said: “I have Asperger's Syndrome and wanted to make sure no risks were taken with my baby other than the genetic risk he already had.
“Most parents are blissfully unaware that mercury is present in childhood vaccinations. It's so toxic that people probably can't even imagine injecting it into a tiny baby.”
Kirsten Haughey, 33, of Bishopton, Renfrewshire, works with autistic children and also faced a fight to get a mercury-free vaccine for baby son Euan.
She said: “I'd read about possible links with autism and didn't want to take that risk.
“I was made to feel as if I was being silly. It took quite a lot of courage to stand up against the pressure.
“I called a public health expert and was treated in a very offhand manner. But I persisted and we've now been told we can get the vaccine we want.”
Bill Welsh, 60, of Giffnock, Glasgow, was so shocked when grandson Luke, 8, was diagnosed with autism that he started a support group - Action on Autism He said: “We've now got hundreds of members, all desperately seeking help. It costs double to have Infanrix so people will have concerns that cost is being put before safety.
“But what a terrible toll. Not only do families suffer, the actual cost of educating and keeping an autistic person in Scotland today is £3million.”
After growing worldwide concerns - with US parents of sufferers launching a £20billion lawsuit against drug firms - American and European health authorities are phasing out vaccines using mercury.
The US Congress announced the withdrawal of Thiomersal from infant vaccines four years ago.
Just last week, Dan Burton, chairman of the Wellness Committee, told the US House of Representatives: “Many parents and a growing number of scientists believe mercury exposure may have contributed to the explosive growth in autism disorders.”
In Scotland, autism has rocketed from one case in every 10,000 children in 1990 to one in every 166, with an estimated 3000 child sufferers.
Also in 1990, experts concluded only 8500 children in Scotland needed specialist education. Now the number is 17,500 and growing.
Deputy chief medical officer Dr Andrew Fraser insists: “The World Health Organisation has concluded there is no evidence of toxicity in infants, children or adults exposed to Thiomersal in vaccines.”
But Sallie Bernard of SAFE MINDS (Sensible Action For Ending Mercury- Induced Neurological Disorders) hit back. She said: “Vaccines containing mercury should be banned immediately.” In February, as concern grew, McAveety, then deputy Scottish health minister, promised mercury- free vaccine on demand.
He said: “Cost is not a consideration. If parents want to explore the alternatives to vaccines that are available, they may do so.”
Last night, the Scottish Executive said they intended to phase out vaccines with Thiomersal but that could take years.
A spokesman said: “This could take time because of the need to ensure it does not affect the safety, quality and efficacy of the final vaccines.” The concerns over the mercury jabs can be revealed as controversy over MMR vaccinations reignited.
A judge caused outrage on Friday after ordering two girls to have the jab without the consent of their mothers.
He backed two men who wanted their daughters vaccinated despite the opposition of their estranged wives, who were caring for the girls.
Parents can contact Action Against Autism at: http://www.actagainstautism.org.uk
* * *
RESEARCH
Some Dynamics of Reading (And Not Reading) Faces
Stony Silence As A Defense and The Poker Face
[While not its intent, this LA Times article about new research into “the poker face” indirectly offers some insights into the dynamics of how people with Aspergers can find themselves in socially disasterous situations or relationships -- and not have a clue why. People with Aspergers may not be able to recognize, and correctly respond to, the poker face message; may be misinterpreted as having one themselves; and not know when or how to affect a poker face to avoid unpleasant interactions with others. See notes below from those with Aspergers or close to someone with Aspergers. Article by Benedict Carey, LA Times.] http://www.latimes.com/features/health/la-he-pokerface
The most offensive ethnic slurs, lewd cracks or political comments can burst from people's mouths with so little warning — what did she just say? — that the reflexive response in listeners is no response at all. A blank mask, a poker face, a willful emotional absence that offers zero acknowledgment of the remark or interest in the topic.
This non-reaction reaction can be handy, averting ugly confrontations about race, religion or, in recent days, war — topics that rarely lead to agreement. It can also serve as an effective roadblock to any dreaded conversation, whether in a marriage, at work or with friends.
No matter how well practiced, however, the impassive mask is hardly a neutral expression. New research suggests that suppressing a strong emotion can significantly alter almost any social interaction, even damage relationships. The findings help explain why this form of nonverbal communication can be astute in some cases, disastrous in others.
Learning how the tactic subtly shapes our behavior and others' can help people use it more consciously and effectively, psychologists say. “The important thing to know is that there are costs to suppressing, both for you and for your conversation partner,” said Emily Butler, a psychologist at Stanford University who studies emotion and social interaction, “and those costs ought to be weighed against the risks of expressing what you actually feel and think.”
Psychologists have long said that masking strong emotion is one of many social deceptions that allow people to navigate everyday life. At a recent dinner out, Christopher Osborne and his wife, Sandra Fulmer, both lawyers in San Francisco, were talking to another couple, friends of friends, who suddenly began making racist jokes.
“We both just shut down completely, didn't say anything, didn't react, even avoided eye contact,” he said of himself and his wife. After a couple of long moments playing to a silent audience, the other couple dropped the subject. “It was clear they felt something, and they wanted the dinner to go well too, so they just stopped talking about that stuff,” Osborne said.
But in about a dozen experiments over the last several years, researchers have documented both physical and emotional distress when people hide their emotions, whether they're alone or in company, embarrassed or angry. In the latest of these, Butler and a team of investigators at Stanford and Johannes Gutenberg University in Mainz, Germany, analyzed interactions among 84 college-aged women. The women sat through a short, bloody film about warfare and then paired off to discuss the movie.
Unknown to their conversation partners, some of the women were instructed not to betray any emotion. By measuring blood pressure during the talks, investigators got a reading of how tense the exchanges were. Compared with the women who conversed naturally, those speaking with a seemingly indifferent partner showed significant increases in blood pressure — as did women who were wearing the poker face. “It was a very odd experience for the listeners,” said Butler. “They said they noticed that something wasn't right, but they couldn't tell us what or why.”
They also reported significantly less desire to talk further with their oddly impassive partners.
This is an ideal effect when you're trying to dodge someone at a party or defuse a loaded conversation with an annoying acquaintance. The other person senses a vague chill and drops the thread of conversation, or at least changes the subject. When the relationship isn't important enough to justify a confrontation, a poker face can deliver just the right amount of social coolant.
As a standard evasion, however, emotional suppression is treacherous. “The problem is that, in any conversation we have, I'm going to have a theory about how you should be reacting to what I say,” said Nicholas Christenfeld, a research psychologist at UC San Diego, “and I'm going to have another theory about why you might not be reacting that way.”
When people react with affectionate attention and good humor, the effect is physically soothing. A poker face is upsetting because it defies even minimal expectations. As psychologists have found, people tend to mentally project onto a blank screen their own anxieties: He thinks I'm boring; she thinks I'm stupid.
The result is that the suppression of emotions comes across as mild hostility, even if it's not meant that way. “We use emotional expression to orient ourselves in conversations, and if you're not getting any feedback from the other person you begin to wonder whether it's safe to say what you really think,” said Jeanne Watson, a psychologist at the University of Toronto.
Budding friendships can wither from such perceived hostility; and a blank face can sever any connection before it buds at all. Psychologists have found that, while sometimes superficial, our initial readings of people can predict which relationships develop and which do not. The women in the Stanford study who conversed with emotionless partners had little or no desire to talk further or pursue a friendship, whereas many of the others did connect and said they enjoyed the company of their partners, despite the violent subject they had to discuss.
Close relationships
In established relationships, of course, the dynamic is different. Partners or friends who know each other well often see through the veil to the underlying emotion. Still, suppression can be corrosive — on both parties involved.
In a study due out later this year, psychologists at Stanford and the University of Washington present evidence that helps explain why. They recruited 86 college-aged couples in steady relationships and observed each pair discussing an issue that had previously caused them tension, such as money or commitment. In about a third of the couples, one partner was instructed to suppress all emotion during the talk, draining all feeling from their speech, expressions and tone of voice. The other couples either discussed their problems freely or were directed to stay upbeat while talking.
Interviewing the men and women afterward, the psychologists found that suppression had a curious effect on memory. Compared to the others, the suppressors had more distinct recollection of how they felt during the
conversation: They vividly recalled emotions such as dread or shame. This is not entirely unexpected; interrupting a thought or an expression is known to enhance the memory of it, according to Christenfeld.
But maintaining the mask also distracted people in the study from what their partner was saying, the psychologists found. When asked a week later to recall what was said during the conversation, the suppressors remembered about 20% less than the others did. In short, sustaining a poker face had turned their attention inward, on their own emotions and away from the shared, spoken conversation.
It doesn't take a PhD in psychology to know that blanking out key portions of important conversations isn't exactly endearing to a beloved partner. After all, the purpose of such talks is to shape future behavior, said Jane Richards, a psychologist at the University of Washington and the study's lead author. If you can't remember which of your habits are most offensive and divisive, you're not going to change them, she points out.
The blank look also puts a cold shudder into any intimate connection. In several long-term investigations, John Gottman, a psychologist at the University of Washington, and Robert Levenson, of UC Berkeley, have shown that one communication habit that's closely associated with marital dissatisfaction is “stonewalling”: a combination of distraction, deflection and emotional distance many people deploy to avoid difficult discussions.
This is how the poker face can play out in a marriage. If both partners are practiced stonewallers and equally happy to ignore problems, the relationship may endure, Gottman has shown. But very often marriages hit the rocks when one spouse can no longer tolerate the distancing evasions of the other, he reports.
Introverts vs. extroverts
Many people can quickly recognize a poker face in others and accurately judge its purpose. At the same time, researchers suspect that personalities partly determine what they mentally project onto another person's blank screen, and how they react to it.
In a rough survey of the 84 women in her suppression and blood pressure study, Butler found that the subjects tended to fall into one of two groups: those who had wanted to strike up a friendly connection with the other person they met in the study and those who hadn't particularly cared how their conversation went.
Questioning the women after the study, Butler found an odd result. Those who expected a friendly meeting, the extroverts, were put off by poker-faced partners, assumed the other person was unfriendly and showed signs of increased stress. But the more introverted women showed higher spikes in blood pressure.
Butler suspects that the extroverts were simply more confident in attributing the awkwardness to the other person. They were more motivated than the introverts to pay close attention to the conversation and consequently better able to identify the source of their uneasiness, she said.
At some level, they understood that suppression often reflects not indifference but feelings or motives so strong that they override the most basic rules of social intercourse.
Copyright 2003 Los Angeles Times
EDITOR’S NOTE: Below are some thoughts on the subject of the Poker Face and Aspergers, shared by people with Aspergers and the mother of a recovering son.
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* * *
“Like Speaking A Foreign Language In Ones Native Country”
Essentially when one has AS it is like speaking a foreign language in ones native country, one where all your words translate as something rude in the mother tongue, as everything one does is misinterpreted. One cannot understand other peoples body language so one acts inappropriately, for instance I find some peoples emotional reaction look so strange that they cause me find them funny in the same way people no doubt think my body language is strange and poke fun at it.
I do not smile much, to the extent that I suppose I find the very act somewhat difficult to do consciously, knowing that I have to consciously do it from time to time. I can remain stone faced in the most emotional of situations, when I was depressed I did not look it, so people misunderstood, and when I am ecstatically happy my face won't show it either. That is not to say my face is without expression, it has quite a range of expression, however it is not NT expression and therein lies the problem.
You see communication, as I have learned from my media studies, does not always mean the message one has consciously initiated, will be interpreted as one wishes it to be, because it is interpreted in the light of each other individuals own perceptions and experiences interfering with that message.
If for instance one does not like Italians and one meets an Italian, one may always interpret anything an Italian says as rash and hasty whereas they are simply speaking with the normal cadence of Italian speech. Such it is with AS. Ones natural modes of communication are interpreted in the light of an NT prejudice which may be valid when judging NT's intent but does not transfer to us, however the recipient of our communication, not knowing we are AS or the facts of which I would like them to be aware will not make allowances.
The medium is so often the message. Dear old Marshall McCluhan :)
-Larry Arnold
* * *
“Unfortunately, If I Speak Out About Something, I Am Often Misunderstood”
As a person with an Autism Spectrum Disorder, the ability to read faces to interpret emotion/intention as well as the ability to control my own emotional expression in specific situations has been very challenging.
My Own Difficulty With Emotional Expression
I have learned over many years what simple facial expressions mean; it seems that for more complex facial expressions, I cannot interpret very well. Moreoever, pertaining to my own facial expressions, it seems that I cannot control my own. In addition, the mere interpretation of other people's facial expressions has often caused me to engage in inappropriate reactions to the point of conflict with another person(s) and absolute despair for myself after the conflict. Being the peacemaker that I try to be, I make an effort to avoid situations that would contribute to conflict. Unfortunately, if I speak out about something, I am often misunderstood. Then I am thinking, “hey you normal people out there, I also have the right to give my own opinion on something don't I?” After every unpleasant thing that I have experienced with people, sometimes, I often feel that being alone, away from people, is the solution to keeping me content, happy and in my own little world. Then, at the same time, I have hope that if I am around people enough, that one day I might meet people who are genuine, and who may really take in interest and understand.
Pertaining to my own facial expressions, I have been given feedback by others through the years, sometimes feedback which has often been very helpful, especially if it comes from somebody who appears to me to have good intentions. Unfortunately, the feedback often reminds me of my own autism being the contributing factor of my problems. Moreover, the disabling part of my disability comes to mind. And in several instances, it has gone beyond mere facial expression to the way I posture myself as well as my voice tone to how I am interpreted by others.
Oftentimes, people have approached me, wondering why I am so mad about everything. Mad, I think to myself? I am not mad. But to them, I look mad. There were times at work when I would become excitable about something, or I might be emphatic about a particular issue. What happens is that some people say I am getting loud (even though I feel I am not loud), and some people say that I appear angry by my facial expression (even though to me, I am not sure what type of facial expression I am using). I tell them that I am not mad or yelling, but they disagree with me otherwise. Then there were those times when I was actually upset about something, but I felt I had my emotions under control compared to what I could have done (you know, the extreme meltdown situation). But in the workplace, I cannot have meltdowns, so I try to keep myself well-contained. But then, just because I get a little upset and express myself a little, I am told that when I was upset that my face got so red, and I was so angry-looking that I looked like I wanted to kill somebody (which was the furthest from my mind). In my opinion though, I was not as upset as what others had told me. What gives here? I do not understand. I know that it is probably my pervasive developmental disorder.
Being very inhibited at work and in other situations when I have to be around other people pertaining to self-expression, regardless, I cannot mask how I feel about something; and, often if I try, it seems that the emotions are either misinterpreted by others or that I appear to have a more intense emotion than I actually feel. Half the time, I really do not know what type of facial expressions I am making; this is a very frustrating situation. Sometimes I actually ask people what emotion do I look like I am expressing? Really! And it seems that I cannot mask my feelings. According to me, I may have one type of feeling, but others may say I am expressing another type of feeling. I can site many examples. It appears that what I am thinking and feeling inside does not appear on the outside, and when it does appear, it is overexaggerated emotions.
In some situations I appear not to be expressing any emotions. For example, whenever I hear jokes, I often do not react because I am trying to interpret what is being said like if it is something serious or funny, or that it is simply not funny. I have much trouble with interpreting jokes and even specific ordinary social conversation to the point that I do not react to them. Perhaps this is where I might appear “poker faced”. Often in some conversations with people, it is as if I have trouble trying to attend to what people are telling me, especially if it is a topic I have no interest in, or if my mind is totally occupied with something else; when this happens, my mind tends to drift meaning that the people who are talking to me probably think I am not interested in what they are saying. I am sure that my facial expression becomes blank. I attribute this to the ADHD aspect of my autism, and I also attribute it to the point that I am so nervous inside around other people, that I cannot focus. I know that in some conversations when I drift, sometimes I ask people to repeat themselves, and then I try to explain to them something. For those who might know about my situation, I will tell them that I am having trouble focusing, but not due to what they are talking about. Sometimes I may say, “my brain just is not with it today!” In situations where I am in a room with a lot of other people, and there is a lot of noise in the background with somebody talking to me, I often cannot hear everything the person is trying to tell me.
My Own Difficulty With Reading Facial Expressions Of Others
Being able to read other's facial expressions has been very taxing. Most of the time I can tell when somebody is happy or sad or upset, but not by mere facial expression alone. More likely, I have learned about how some people feel through my actual interactions with them and such. Furthermore, I still am unsure about their emotions, about what they might be thinking. And then with myself, I have problems with knowing how people really think about me as I cannot interpret their facial expressions, let alone some of their body language, etc. and etc. Sometimes, all I can really go by is what they say to me (their feedback). When it comes to the more complex facial expressions, I cannot interpret very well.
It is almost like being blind or deaf. Because of many years teaching myself certain social skills (which does not come natural for me), getting my Master's Degree in Counseling (which was a big help in teaching me how to learn to listen to others) and working in the human services field where I had no choice but to learn specifics about human interactions (thank God, I have not been in too many tense situations with having to deal with a lot of people--in some ways my boss has protected me because she knows of my social awkwardness), I have learned on the simple level of dealing with people. The most complex problem in dealing with people is that they can be so unpredictable, and there appears to be a lack of rules (an anything goes sort of attitude).
I tend to do well in situations where there are well-defined written and spoken rules and boundaries of how to interact with somebody, i.e. with my clients at work. I know how to deal with my clients because there is this professional-client type-of-expected interactions. However, with co-workers and peers, I am often stumped and confused. Even with my boss, I encounter so many inconsistencies in her own behavior and in what she says to me to the point that I come home so stressed out that I either have a small meltdown, have to go to bed to sleep it off, or obsess on it to the point that I am having pains in my chest or stomach.
It is far from easy working in the human services field; it is a very tiring experience. Now I wish I can use what I have learned in human services to help my own people - those with autism- a reason for having gone into human services to begin with. When I first began to work in human services, all I can say is that it was “terrifying”, a “dread” and “ anxiety-provoking” for me especially with co-workers and peers (this is another story for another day). I will comment that it is a “Culture Shock” type of thing, having come from a sheltered environment, having spent a good part of my existence behind books in a library when I was in high school/college and having not very many services available to me. Back when I was growing up, there was no such thing as High Functioning Autism or Asperger's Syndrome; social skills groups; peer mentors; etc.) Having memorized various pictures of facial expressions, and how people interact with each other in certain situations on TV have actually helped me.
In addition, watching people interact with each other in school or at work was helpful especially if the people were engaging in healthy interaction. Reading some of Carol Gray's Social Stories and some of the writings of Temple Grandin and Tony Attwood have helped. And, if I make up social stories for specific difficult situations, I can cope better, and I can control my behavior much better. Having my mother around to talk to has helped as she understands what I am going through. If it was not for my mother, I would not have done as well as I have. Kudos to the parents of
children with autism. In addition to reading facial expressions, I also
have problems with remembering peoples faces. When I meet somebody, it may take several interactions with the person before I actually can recognize them. I will admit that being in human services, I have actually embarrassed myself over a dozen times. I cannot say to a client....”excuse me, I cannot recognize you because it is a part of my autism”. It is indeed a very frustrating situation. I have learned to compensate by memorizing specific aspects of a person' s face, especially after having seen the person several times. I actually do better with parts of a person's face then with the whole face.
As a result of my autism, life has been very challenging and full of compensating on my part. Yes, I have had to pay many a price, and I have numerous physical problems (obesity, fatty liver due to obesity, sleep apnea due to obesity, borderline diabetes due to obesity, a variety of anxiety disorders, extreme sensory overload) as the result of trying to navigate my way into the world of “normals” and having experienced the horrendous pain of rejection. (Having to take various medications to help me gain control over my anxiety, to reduce hyperactivity, to stay calm and to keep focused at work have also contributed to most of the weight gain). On the other hand, with my autism, I have been blessed with some unusual gifts, as well the ability to function in a normal everyday situation, the ability to speak, the ability to write eloquently, the ability to love a few people in my life, and the ability to create structure from chaos.
-Leila M. Shirley
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“With The Right Interventions. . .”
While my son Alex initially was not good at displaying his emotions on his face, he has learned to be quite an actor and has developed talents in this area. For the last four years my son received speech class every day at school (five days per week) which focused on pragmatics and also he was in a weekly friendship skills group which helped him develop better social interactions with others... (they used mirrors, movies, one-on-one, etc.) There was a free online software program called Reading Faces that also helps children with Aspergers understand facial expressions better.
I believe with the right interventions (speech, social skills) that are repeatedly taught to children at a young age, that the “poker face”, which is often associated with those with Aspergers can be alleviated greatly.
-Monica Moshenko
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