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"It is worth noting at this point that many patients referred...seem to have become disabled more by their traumatic life experience than by any congenital impairment” -Tamsin Cottis

“In fact, the past is the past and the only thing that matters is what Lara Palay, LISW-S happens right now. And what is trauma is the residue that a past event leaves in your own sensory experiences in your body and it’s not that Senior Fellow event out there that becomes intolerable but the physical sensations with Mental and Emotional Health Program which you live that become intolerable and you will do anything to make them go away.” -Bessel Van der Kolk The Center for Systems Change

“Trauma is a disease of not being able to be here.” -Pierre Janet

Trauma A major trauma could be: Sexual Assault/Physical Assault Trauma is any experience or series of experiences that Natural or manmade disasters make the individual feel that he or she is in danger of dying, or of being emotionally “wiped out ”or Catastrophic illness annihilated. Loss of a loved one Bullying Deprivation and powerlessness to act on one ’s own behalf

Ford, Adler-Tapia, 2009

Not all trauma results in lasting problems. Individual factors also impact of trauma/stressor: Some contributing factors to traumatic stress: Previous history of traumas/stressors/ Duration History or family history of mental illnesses Intensity of stressor Inherent resilience/vulnerability Time of day Substance abuse Warning/ no warning Intentionality/preventability Difficult relationships/poor attachment to Scope/numbers affected others. This is especially true if the trauma Support system during and after traumatic event(s). has been caused by another person or people.

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Many people experience trauma. People with “Ordinary ” life event trauma could be: developmental disabilities are at greater risk for being victimized or abused (Sobsey, 1994). They “ ” different are also more likely to have everyday stresses or Not being accepted losses build up and become traumatic. Not being able to do what others do Moving to a new home or significant change at home Knowing that one has a disability and is “different ” than others Not being listened to Being misunderstood Failing at a task Getting confused and overwhelmed

Ford, Adler-Tapia, 2009

Post-Traumatic Stress Disorder (PTSD) Trauma Symptoms

People who have been through a traumatic experience may develop short-term symptoms Traumatic stress symptoms come in three clusters: () or longer-term symptoms (Post Traumatic Stress Disorder, “PTSD ”). Not µHyper-vigilance (always on “red alert”) everyone who experiences trauma will develop a µConstriction (avoiding things that can be triggering) µIntrusion (having upsetting memories, thoughts stress disorder, but many people will experience and dreams) some symptoms, and some will experience almost all of them. Chronic trauma in childhood may not result in “classic” presentation of PTSD (Van der Kolk, 2005)

Hyper-vigilance Constriction µAvoids activities, places, people, things to keep µStartling easily/frequently from being reminded/ ”triggered ” (avoidance can µIrritability ripple out, become more and more removed from µDifficulty concentrating obvious triggers of incident) µDifficulty relaxing µCan’t remember important parts of the trauma µDifficulty falling or staying asleep µMuch less in significant activities µNeeding to be near or in sight of exits; agitation µFeeling detached from others when blocked µNarrow range of , numbness µLack of a sense of future

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Intrusion Other ways symptoms might be observed…

µFlashbacks µNightmares Physical: µDisturbing images/thoughts/fantasies µ Eating disturbances (more or less than usual) µPhysical response (sweating, shaking, freezing, µ Sleep disturbances (more or less than usual) lashing out) to internal or external triggers that µ Sexual dysfunction resemble the event (this is very common!) µ Low energy µ Chronic, unexplained

Emotional: Cognitive: µ , spontaneous crying, despair and hopelessness µ µ Memory lapses, especially about the trauma µ attacks µ Fearfulness µ Difficulty making decisions µ Compulsive and obsessive behaviors µ Decreased ability to concentrate µ Feeling out of control µ , and µ Feeling distracted µ Emotional numbness µ ADHD symptoms (restless, agitated)-NOT µ Withdrawal from normal routine and relationships µ and self-loathing the same as ADHD but may be misdiagnosed as such

Remember! \

People with developmental disabilities may not be able to verbally express the things that are “People usually want to teach other people from bothering them. Look for non-verbal signals of the top down, but the brain actually works from distress and anxiety, especially new or increased the bottom up” complaints. Non-verbal distress can be a sign of -Bruce Perry, M.D. many problems besides trauma, and a medical evaluation may be needed, but it’s a good indicator to pay close attention to find out more.

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Human Brain Development and Relationships: Brain Development and Neuroplasticity Repeated use of neural pathways makes them stronger and increases After the brain stem, the next part of the brain to develop in the fetus is their number. Pathways that are not used pruned, and wither away. the limbic system, where emotions, safety and memories are primarily This is the basis of neuroplasticity-the process by which the brain is processed. Eye contact, mirroring facial expression and responsiveness “plastic” or moldable, and changes its “maps” of neural connections from the parent stimulate these parts of the brain to continue based on use. “Use it or lose it” is actually how the brain works, to developing in infancy (Schore, 2003) . different degrees at different stages of life. Without this , the brain is impaired in developing. The individual may have extreme difficulty later in life attaching to others, The more complex the brain region, the more plastic it is. That is why reading facial expressions, self-regulating and having a continuous the cortex changes a lot as we learn, and the brainstem changes little sense of self. Early memories are encoded through the senses (this is why early memories often involve a strong sensation). These help to create the Let’s say it again… pattern against which other experiences will be evaluated. Thus, early Infancy, early childhood and young adulthood are periods of dramatic experiences may have more lasting impact than later ones (Perry, 2011). growth and pruning. During infancy, the limbic systems and cortexes develop directly in response to chemicals released through interaction with another human. (Schore, 2003)

sensory The Brainstem

Located at the very base of the brain, it looks like a stem (!) and bridges motor the bottom of the brain (diencephalon/cerebellum) and the spine. The is Hippocampus the part of the brain that generates reflexes.

Amygdala Basic body functions (following the dictates of the hippocampus for Thalamus rhythm): mPFC µ Digestion Hypothalamus µ Body Temperature µ Breathing LC µ Startle responses NPG

Pituitary

PAG

Adrenals cortisol

Diencephalon/Cerebellum The Amygdalae Located under the hippocampus in the limbic system, on both Located in the lower, back part of the brain, above the brainstem. This is sides of the brain. This is often called the emotional center of the part of the brain that reacts to stimuli. the brain (as is the ‘limbic system” as a whole). Begins developing before birth. µ Contains in its core the Reticular System (RS) and controls “the four A’s” (Heller, 2002) : µInvolved with connection, and positive and negative o Awake associations (emotional or “implicit” memories), producing o Asleep emotional reactivity. o µEvaluates incoming stimulus (from sensory thalamus) o Attention µAsks question “am I safe?” µ Controls appetite and satiety µReleases stress chemicals if not µ Involved in motor reactivity (Perry, 2011)

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The Hippocampus The Cortexes

Located under the cortexes, part of the limbic system. This interacts Cover the top and front of the brain. Develop last, and control abstract with the subcortex and is involved with concrete operations and thought. Consciously decides to attend or ignore a stimulus. making sense (with the cortex) of sensations. µ Reasoning µ Involved with factual (or explicit) memories µ Abstract and symbolic thought µ Knits together (with the cortex) the incoming of sensations and µ Problem-solving experiences into a narrative. This is why non-stressful events can be µ Impulse control (anterior cingulate cortex) told like a story, but stressful events are like snapshots; the µ hippocampus is temporarily not communicating with the cortex). µ µ Helps regulate bodily functions and rhythms (with the brain stem) Imagination µ µ Helps create a context for experiences, so that we can remind Planning ourselves what is happening to calm down, etc. µ Generalizing beyond personal experience µ Involved with affiliation, and reward (with the cortex)

Cortex Development What happens to the cortexes during a traumatic event?

The cortex is the last part of the brain to develop, and does not fully When the brain is flooded with stress chemicals, the left frontal cortex finish growing until around age 25 or so, which why adolescents and shuts down, including Broca’s area, which is largely involved with young adults have trouble with some of the most sophisticated kinds of speech. This means that when terrified, people cannot form words, reasoning (delayed gratification, planning for the future, evaluating though they may be able to make inarticulate sounds or scream. consequences, generalizing experience). This can carry through to when someone is in a triggered state. In The other regions of the brain, such as the limbic system, build studies of the brains of people who have significant traumatic stress, the connections with the cortex to allow for smooth communication and brain is smaller and more compressed, which slows signals to the shifting from one level of functioning to another. In individuals with hippocampus and cortex even more. significant traumatic stress, this interaction can be damaged. More on this later. When the stress response is activated, Broca’s Area, which is important in speech, is shut down. So, triggered people can’t talk about what’s happening to them (NASMHPD, 2011)

The Right Hemisphere The Left Hemisphere The right hemisphere interacts intensely with the limbic The left hemisphere organizes timing of memory and problem solving, system and the areas of the brain that receive visual input and generates words symbols, and “culture”, connection and creative make sense of it. Normally, the brain doesn’t “take pictures” thought. because the thalamus is working, and keeps a flow of information going. It “knits” sensations together like a rope These functions and abilities get knocked out when traumatized. If the into a single experience. brain is repeatedly stressed, the emotional brain (which can pick up mood, emotional cues) becomes overly sensitive or overly insensitive to When there is no flow because the thalamus is shut down, the expressions, but can be very self-centered and self-referencing (van der Kolk, brain makes “snapshots” of sights, smells, etc. This is why 2012) traumatized people often have flashes of sense memories but not a coherent “story” about the event (van der Kolk, 2012)

This can lead people to believe that they themselves are crazy or making it up, and may make others disbelieve the event or dismiss them.

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The Vagus nerve-from “rest and digest” to “fight or flight” The Brain That Knows Itself image from neurowiki 2013.wikidot.com The medial prefrontal cortex is the part of the cortex that governs us knowing ourselves. It runs like a Mohawk hairdo from front to back of the top of the brain. This part also communicates with the hippocampus to make sense of the sensations coming into the body, and keeping us oriented in time and space. W

This is the part of the brain that can get “into” the emotional brain (limbic system), which is good. It is also vulnerable to stress and can be very damaged by trauma, which is bad (van der Kolk, 2012) . People who seem to lack a solid sense of themselves or report feeling depersonalized or robotic after trauma may have experienced damage to the medial prefrontal cortex.

How We Evaluate Risk If You Can Move, You Feel Better

Another way to think about this is that we consider how we feel The body needs to move or take action to protect itself. If this about the risk emotionally (like or dislike), often based on happens during a stress-inducing event, the individual may be memory, and physically (pain or pleasure). less likely to develop full-blown PTSD. Trauma is largely caused by not able to do anything about the situation while hormones are flooding the brain (van der Kolk, 2012) . The amygdala signals the hypothalamus that there is danger, and the hormones cascade to the brain stem to ready the body for the risk. The pituitary releases cortisol which signals the adrenal gland to release adrenaline.

THEN the amygdala sends sensory information to the cerebrum, which then tries to sort out what is happening (Heller 2003) . This HPA axis is involved in many mood and anxiety disorders.

Trauma and Sensory Processing

“How freely people move within the world and how wise their choices are have less to do with free will than with the stability of their arousal level” (Heller, 2002) Sensory processing: Effects of Trauma on the Brain µ develops in infancy, before cognition Or ,“What has happened to change the brain?” µ is closely connected to cortex and sub-cortex and linked to danger responses µ filters and prioritizes information from the outside µ lack of integration on continuum from mild to devastating µ individuals can be sensory-defensive (high arousal) or sensory seeking (low arousal), sometimes both µ sensitivity can vary from situation to situation and fluctuate throughout lifespan µ Can be caused by trauma at any point, especially early life

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Trauma and Sensory Processing continued: what’s activated Trauma and Sensory Processing when? Proximal (These senses develop first, and are closely involved with communicating “The first ‘stops’ for primary sensory input (from outside…and inside the messages about the distal senses ): body) are the ‘lower’, regulatory areas of the brain-the brainstem and µ Proprioception (where the body is in space) diencephalon, which are incapable of conscious perception [italics L. Palay] (Perry, 2006) µ Vestibular (balance, stability, movement, rhythm) µ Tactile (/touch/pressure, vibration, pain, hot/cold) If the sensations are perceived as a threat (because of new information, or old “coding” of the sensation as a threat in the past), it allows “…the Distal (the traditional “senses”): individual to react in a near-reflexive fashion (Perry, 2006) µ Sight/brightness µ Hearing So… µ Smell Asking someone to interpret a sensation (hand on the shoulder, e.g.) as µ Touch neutral when it is coded into the “lower” brain as a threat is like asking µ Taste you to think through whether or not you should remove your finger from a hot stove burner before you move your hand.

And if there are sensory problems… (Heller, 2003) “Fight, Flight and Freeze ” moments Sensory reactions can include (but are NOT limited to): TouchTouchTouch µ flinches, lashes out or withdraws from unseen or surprising touch Once triggered, the limbic system may “hijack” the µ craves deep hugs but dislikes light touch or kisses µ brain. Initiating the stress response result in hypo- irritated/anxious standing in line, in elevator, people too close or crowds µ fussy about new clothes, tags, turtlenecks, belts, hats, arousal, or dissociation. Or, an individual may go into µ bothered by textures on hands: dirt, clay, sand, paste, food, sticky substances hyper-arousal, and become frantic or aggressive. These responses are what we usually associate with “fight or Oral flight”. µ picky about food, avoids certain textures like mushy or crunchy µ dislikes objects in mouth like toothbrush, dentist’s fingers µ mouths objects, like pens

PainPainPain µ over-reacts to pain µ under-reacts to pain

And if there are sensory problems…cont’d. And if there are sensory problems…cont’d.

Vibration/Auditory Vestibular Movement/Movement/BalanceBalanceBalanceBalance µ annoyed by vibration in vehicles µ feels threatened when tipping head back or upside down (like getting hair washed) µ annoyed by vibration of heating/cooling systems, outside traffic µ fearful climbing/descending stairs µ unnerved by loud bass in music µ avoids activities that challenge balance or center of gravity

Sound/Auditory Temperature µ dislikes loud, high-pitched, high-frequency sound µ easily cold/hot µ easily distracted by ambient noise µ reacts irritably to quick changes in temperature (hot shower to cold air) µ irritated by volume, pitch of certain voices SmellsSmellsSmells VisualVisualVisual µ dislikes sharp odors that don’t seem to bother others µ irritated by bright light µ hypersensitive to mild body odors, scents of soap, perfume µ annoyed by objects close to face µ easily light-headed/nauseated from chemical smells like paint, gasoline, cleaning µ annoyed by moving visual field supplies, new carpets, µ overstimulatedby eye contact (italics mine) µ dislikes certain food smells

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Social Pain and Physical Pain-The Brain Treats Them the The Effects of Abuse on Children: Three Key Assumptions (DeBellis, 2001) Same

Social Pain Overlap Theory (Eisenberger and Leiberman, 2007) suggests that social 1. There are infinite causes of trauma, but finite pain and physical pain share the same neuropathways and register in the same part of the brain (the anterior cingulate cortex). This suggests that responses the brain experiences pain without much (if any) distinction about 2. Trauma is worse for kids than adults, physical or emotional origin. Physical pain may worsen emotional pain and vice versa. neurologically 3. Interpersonal stressors like abuse are worse “The most powerful rewards [neurologically] and the most intense pain come from relational experiences” (Perry, 2006) than non-interpersonal ones (community violence, natural disasters, e.g.) as they are more likely to be ongoing and include loss of trust as well as actual traumatic event

“The state becomes a trait” (Perry, 2006) “The state becomes a trait” (Perry, 2006) . These behaviors may be conscious coping strategies, or they may be pre-conscious brain states. Rather than recognizing People living with continual may become “brainstem a fear-based brain state, or a habitual and/or conscious driven”, in a constant state of trying to survive. Enduring attempt to manage or prevent fear, the person may be behaviors or habits result, even if not triggered at any given diagnosed incorrectly with moment. • Obsessive Compulsive Disorder • Bipolar Affect Disorder • Borderline Personality Disorder • Intermittent Explosive Disorder • Oppositional Defiant Disorder • Disruptive Behavior Disorder • Asperger’s Syndrome or other spectrum disorders

What Does This Feel Like? What Psychological Functioning Does Trauma Disrupt?

“When you have a persistent sense of heartbreak and gutwrench, the physical sensations become intolerable and we will do anything to make those disappear…People take drugs to make it disappear, µ Emotional responses and regulation in a given situation and they cut themselves to make it disappear, and they starve themselves to make it disappear, and they have sex with anyone who µ Context: the ability to assess the situation comes along to make it disappear and once you have these horrible sensations in your body, you’ll do anything to make it go away. Trauma results in loss of inhibition (standards of behavior become If these sensations last long enough, your whole brain starts fighting “whatever I need to do to protect myself is OK”) and perspective against emotions…traumatized people who continuously have a state taking (is the situation directed at me or an actual threat to me?) (van der of heartbreak and gut wrenching feelings learn to shut off the Kolk, 2012) sensations in their bodies. And they go through life not feeling their physical presence.” -Bessel van der Kolk, 2012

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Sensory Diets The good news A thorough assessment of sensory integration can identify sensory problems. OT’s and other professionals may recommend a “sensory diet”, which may include things like: Our brains grow and change all our lives. The brain can build µ Electronic metronomes more connections for feeling safe and loved, and avoid over-reacting µ Brain Gym and other movement protocols to stress signals, even after considerable damage from stress. The µ Deep breathing brainstem and limbic system change less, and take longer to do so, µ Foods to chomp, suck or chew vigorously than the cortex, so severe trauma will take longer to heal, but it is µ Full-spectrum lighting possible. When we see the search for safety in behavior, how can we µ Earplugs or headphones that block noise (and/or can play soothing music) use it to promote healing? µ Essential oils µ Deep pressure massage/joint compression µ Brushing protocols (performed by certified professionals only ) “No one ever got healed by a token economy”-Steve Maenle µ Yoga, tai chi µ Vitamin supplements

What is Calming? Move the Activity of the Brain You want to help someone move from the brain stem (body function), to Rhythmic moving (walking, drumming, rocking) the hippocampus (emotions), to the cortex (thinking). Help them feel safe and calm FIRST. Repetitive movement of hands (dribbling basketball, running hands through sand or dried beans) The better their emotional associations with you and/or the materials or task, the quicker a cascade of antagonist chemicals will help clear away Sensation on hands (lightly cascading is usually better than sticky) or the stress chemicals and allow the “thinking brain” to come back on-line. fluffy (warm blanket, stuffed animal)

Then try interrupting with a thinking task like sorting cards in order of Soothing smells complexity. Firm pressure/hugs (if tolerated) There are many ways to calm the brain quickly. Remember emotional memory (especially linked to the senses) is much faster than thought. Nature (sight, smell, sounds, sensation, ie, walking barefoot on grass)

The Response (Benson, 1984) Individual psychotherapy can be effective for individuals with 1. Find a short phrase or prayer (can be a short prayer or the first line of a longer developmental disabilities. Some emerging practices for treating trauma prayer, a mantra or a meaningful statement). The more personally significant (though studies with individuals with DD are limited as yet): or reflective of your beliefs system it is, the more effective it will be. For example: the Sh’mah, a phrase from the Lord’s Prayer, a Buddhist mantra or EMDR Muslim prayer, or the Serenity Prayer) Emerging brain-body interventions (yoga, movement, dance, drumming, singing: rhythmic and involving synching with others) 2. Find a quiet space (and a set time-you may want to set a timer) Tapping 3. Get comfortable, close your eyes and relax your muscles Modified, skill-based DBT (may not include complete formal protocol) 4. Watch your thoughts, without judgment Sensory diets 5. Breathe easily in your own rhythm and repeat your phrase silently on your Neuroimaging exhale 6. Calmly return to your phrase if your thoughts wander What distinguishes these approaches from talk-therapy is their activation 7. Repeat at least twice daily of the deeper parts of the brain-rather than relying on activity in the For more detailed instructions: Beyond the Relaxation Response, pp. 106-117. cerebellum to affect the lower brain systems without engaging them.

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What about medication? Remember… 1. Therapy works best when the team and the therapist communicate to get the most out of both Medication may have a role in treating trauma, but not by itself. Anti- anxiety drugs, for example, can calm mood but will not keep the brain 2. It helps if the whole staff gets training about the approach and stem and limbic system from being triggered into trauma states. They figures out ways to bring those skills and tools in to the environment may help the person stay calm enough to attend therapy or maintain for everyone, staff and clients daily functioning, but they cannot activate deep brain systems and then 3. If the trauma states are “brain-stem driven”, then talk therapy alone help them to re-organize themselves. Only therapeutic experiences and will not help. The “lower” systems like the brainstem and limbic activities that activate those systems and then offer new experiences, system must be engaged. Rhythmic movement, yoga, drumming consistently over a long time, allow those deep structures to remain their can get to these lower systems. “Reprograming” these parts of the habituated responses. Some trauma experts theorize that medications brain will take much longer than the upper levels like the cortex. such as antipsychotics may actually prolong or lower the threshold for Interventions and corrective emotional experiences may need to be dissociative states and should not be used with children with PTSD repeated many many times (Perry 2006) symptoms. 4. These experiences need to be consistent, predictable, patterned and frequent (Perry, 2006)

SourcesReferences and Bibliography

Adelson, R. Stimulating the Vagus Nerve: Memories Are Made Of This, American Psychological Association, Vol. 35, no. 4. 2004.

Benson, H. Beyond the Relaxation Response. Berkley Books, 1984.

Daniel, B. and Wassell, S. Assessing and Promoting Resilience in Vulnerable Children. Jessica Kingsley Publishers, UK 2002

“ DeBellis, M. “Developmental Traumatology: The psychological development of maltreated children It is the relationship that and its implications for research, treatment and policy”. Development and Psychopathology , 13, ” Cambridge University Press, 2011. heals. Doige, N .The Brain That Changes Itself. James H Silberman Books, 2007. - Irvin Yalom, MD Eisenberger, N. I. , Lieberman, M. D. “An Experimental Study of Shared Sensitivity to Physical Pain and ”, Pain , 2006, 132-138.

Ford, G. R., “Improving Lives: EMDR Psychotherapy for People with I/DD Experiencing Trauma and Distress ” NASDDDS November 18, 2010

Felmingham, K, Kemp AH, Williams L, et al. “Dissociative responses to conscious and non-conscious fear impact underlying brain function in post-traumatic stress disorder” Psychol Med, 38, 2008.

Heller, S. Too Loud, Too Bright, Too Fast, Too Tight: What To Do If You Are Sensory Defensive In An Overstimulating World. HarperCollins, 2002.

Herman, J. Trauma and Recovery . Basic Books, 1992. Lara Palay, LISW-S National Association of State Mental Health Program Directors, 2011. www.nasmhpd.org. Senior Fellow

Perry, B. “Applying Principles of Neurodevelopment to Clinical Work With Maltreated and Traumatized Children”, from Working With Traumatized Youth In Child Welfare, chapter 3, Ed. N. Mental and Emotional Health Program Boyd, Guilford Press, 2006.

Pynoos, R.S., Steinberg, A.M., and Goenjian, A., “Traumatic Stress in Childhood and Adolescence”. In Bessel van der Kolk, Alexander C. McFarlane and Lars Weisaeth (Eds.) Traumatic Stress. The Guilford Press, 1996.

Schore, A. Affect Dysregulation and Disorders of the Self . Norton and Co., 2003. The Center for Systems Change

Sobsey, D. Violence and abuse in the lives of people with disabilities: The end of silent ? Baltimore: Paul H. Brookes Publishing Co,1994. van der Kolk, B. “Developmental Trauma Disorder: Towards a Rational Diagnosis for Chronically Traumatized Children ”, Psychiatric Annals, 2005. [email protected] www.centerforsystemschange.org van der Kolk, B., “Psychological Trauma: Neuroscience, Attachment and Therapeutic Interventions”. 22nd Annual International Trauma Conference, December 2012.

Wilson, S. R. “A Four-Stage Model for Management of Borderline Personality Disorder in People With Mental Retardation ” Mental Health Aspects of Developmental Disabilities, 4, 2001

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