XXXIVth International Congress on Law and Mental Health. Vienna, 2015. INTRODUCTION The brain is a complex system The effect of prenatal alcohol on the developing brain is ubiquitous; resulting in a complex chaotic system, which is reflected in the complex chaotic behavior so often seen in those diagnosed with FASD. It is therefor remarkable and a tribute to those with FASD who, with great effort, utilize their disabilities to improve their lives. To understand perseveration the normal process of perseverance has to be understood. To understand both of them, their relationship to brain function and the role of prenatal alcohol exposure on brain development has to be understood. Perseverance is an amazing and beautiful example of the complex function of the human brain; so necessary for appropriate executive and adaptive functioning. It is a normal, positive process of persistence in overcoming adversity, or a difficult problem. The degree to which it is pursued in any given situation varies according to the individual’s degree of interest; and psychological profile. Yet within this normal range we all have the ability to consider other issues and shift our focus accordingly, when required. This critical aspect of brain function enables us to relate and adapt to our immediate and future environment, and relationships PERSEVERANCE One aspect of perseverance that has not been sufficiently emphasized is the ability to move to an alternative focus when circumstances dictate; that is, set shifting This aspect is vital; without it humans would not have advanced from the stone age to the present high tech age; nor would individuals be able to realize their intellectual and functional potentials. The normal process of perseverance requires - - Emotional and cognitive storage and recall of the past -[the medial temporal lobe. hippocampus, amygdala, HPA axis, prefrontal cortex, caudate nucleus-striatum, cingulate gyrus , neurotransmitter systems. and - Analysis and assessment of what is recalled in the context of - the present environment, consciousness, self- awareness, assessment of inner self. anticipation of the future, and the ability to shift focus when necessary. unimodal sensory cortices lateral and medial parietal, and temporal areas, orbito frontal, medial frontal-cingulate gyrus,

prefrontal cortex, insular, premotor cortex, cerebellum, basal ganglia- striatum- caudate nucleus, amygdala, and thalamus, neurotransmitter systems, precuneus, hippocampus, corpus callosum. The development of all the parts of the brain and networks that provide these functions is affected by prenatal alcohol exposure: the normal process of perseverance is interfered with, and an appropriate shift of focus is not possible. The process then becomes one of Perseveration; executive and adaptive functioning are compromised. It is under these circumstances that the behavior of those affected by prenatal alcohol exposure is seen as an affront to society that is willful in nature, and not the manifestation of abnormal neurological development that it truly is. PERSEVERATION The word perseveration was introduced in the early 20th century in the context of psychology, psychiatry and brain function : since then its usage has developed in the context of interference with the normal process of perseverance. Perseveration is a normal phenomena in early childhood. Normal development requires elimination of childhood perseveration. For those with FASD this elimination does not occur. Interruption of perseveration, by the will of others or circumstances beyond their control, is an extremely uncomfortable process for those with FASD- so they react: reactions usually referred to as Transition Reactions, with misinterpretations by the observer. Our early concept of perseveration as a construct of the mind was clarified as a pathological neurological proces with the identification of the involved areas of the brain. In 1914 William S. Foster wrote a review “On the Perseverative Tendency”. He covered the use of the word perseveration over the preceding fourteen years. The review dealt with observations and theories of normal perseverance and alluded to perseveration. While he did not specifically distinguish between the two, Foster did acknowledge that the perseverative tendency included a number of functions that arose from the brain; similar to the Stuck-In-Set Perseveration described today. It was recognized early on that perseveration existed in different types with different behavioral patterns. The three types usually referred to were first proposed in 1984 by Sandson and Albert. The clarification and defining of these types and their behavioral patterns continues. Repetition of words or movements is most referred to when describing perseveration. Such cases are related to more discrete pathology involving the neuroanatomy of the impaired function.

The Stuck-in-set perseveration relates to more intellectual behavioral issues involving inability to shift the focus of activity in spite of previous experience. There is a consensus that the frontal lobes and their associated white-matter pathways play a prominent role in perseveration. However, there is evidence that damage to other areas of the brain contributes to stuck-in-set perseveration. Stuck-in-Set Perseveration is associated with more diffuse neurological impairment involving a number of brain areas. [ PFC, Basal ganglia- striatum, Dopamine Systems, tuberoinfundibular pathway, ventral tegmental area.amygdala.hippocampus, cingulate gyrus,olfactory bulb] All the areas of the brain referred to, their development, their function and their neurotransmitter systems, are compromised by prenatal alcohol exposure. BEING BORED Those with FASD repeat words that we use: but in fact the same words may have a different meaning and context for those with FASD, for example “being bored”. I have heard from individuals diagnosed with FASD that they exist in one of two states: a mind of chaotic, uncontrolled and uncomfortable thoughts, usually described as being bored, or a mind perseverating, with or without physical activity. They seek the second to escape the first. What they perseverate on is determined by their particular set of cognitive, emotional, information processing, memory and sensory disabilities; as well as their early childhood experience and their immediate environment, including how others relate to them. What they may perseverate on to soothe themselves extends from cutting, provoking others, to more acceptable behaviors, such as playing video games, reading or sports. Alcohol and hard drugs are used to obliterate the first state of mind. Marijuana and Tobacco generally appear to have a specific action that reduces their multiple chaotic thoughts and allows them to perseverate on one process; that is they are using them for relief, not pleasure. N.. was 19 years old when she first came to see me. She had been diagnosed at the age of five and had been adopted and raised in an ideal rural setting with an understanding family, consequently she had not experienced the secondary disabilities of FASD. The event that caused them to see me was an unexpected and out of character disappearance for a weekend. N. had been persuaded to visit a male, contacted on the internet. Fortunately she was quickly located and returned home by the police.

N. was still at high school. She had an Individual Education Plan. but was many credits behind as she had significant disabilities, in great contrast to her mature, attractive appearance. Expectations were explored and adjusted. The daily manifestations of N’s disabilities were reviewed in the context of “stealing’, “lying” and inappropriate communications over the internet. The family understood that N would always require care and supervision. This was a concept that N. struggled with, a frequent scenario with FASD. It was on their twelfth visit. N’s mother said “as usual, she spends all her time playing video games” Immediately N said, “ I do that when I’m bored”. I realized, for the first time, that actually I did not understand why she played video games continuously when bored. So I asked her “what is being bored like?” Her answer was a revelation. ‘When I’m bored I have lots of thoughts in my head. It is uncomfortable. I don’t like it. So I play video games and it all goes away” She was never able to tell me what the thoughts were. She did make it clear that she had no control over them and the process was not nice. They were associated with uncontrolled changes in feeling good / bad. Since they have always been told that they are bored when in fact they are in a state of mental chaos, inevitably they will come to believe the two are the same. They describe different ways of controlling the mental chaos, but they all have one thing in common, it is a process of perseveration. Understandably, the cognitive, information and memory deficits of the individual also determine what they do for relief. Many parents are familiar with the intense texting and video game playing of their children, and how aggressive or violent they may be when this activity is taken from them. We need to ask ourselves how we would react if we suffered from violent migraines and had our pain medications taken from us with no other means of relief, we might then have some understanding of the role perseveration plays in the relief of such chaotic states. M. 27 years: diagnosed FASD at 23 years. “It is like a beehive full of bees buzzing around in my head..... when I get drunk it all goes away” Savanna Pietrantonio “Being bored- it is a state of restless irritable discontent that also manifests physically.

Heart rate goes up, cannot be still, I usually pace, I can’t focus. I feel impending doom. It is worst that being angry”. "this feels VERY uncomfortable when someone or the environment tries to distract me from my perseveration”. “Bored a lot, more thoughts, not nice, better with alcohol. Bored is worse than being angry”. “Perseveration can at times be a gift from the universe to FASD people. Perseveration can also be our worst enemy. The key is to understand our brain and how we can use it to our advantage”. There is no research re. PAE, FASD and Boredom. The research on boredom is made on the premise that boredom is the brain’s reaction to the inadequate environmental stimulation. While this is true for those with FASD the consequences are severe, uncomfortable and uncontrolled thoughts and emotions that can only be eliminated by the process of perseveration. However, in the research there are correlations of boredom with the primary and secondary disabilities of FASD, associated behaviors, mental illnesses, risk factors, and brain anatomy, function and circuits. [ bilateral ventromedial prefrontal cortex, precuneus, putamen, hipporcampus, amygdala, insula] Not surprisingly there are contradictions in the studies: studies which have not considered the influence of the neurodevelopmental disabilities of FASD on their findings. The distress described by those with FASD is similar to some descriptions in the various studies. The corollary in the non PAE brain may be the complex activity of the brain at “rest”. Punishment does not prevent recidivism for those with FASD. An understanding of the nature of stuck- in- set perseveration is necessary in order to correct the psychiatric and judicial injustices experienced by those with FASD. When we understand perseverance/perseveration, adaptive and executive functioning we can see that isolation and sensory deprivation are a gross challenge to our sanity. How much more is that the case for those with the complex chaotic functioning of FASD?.

E.. was a teenager referred by a psychiatrist. She was a resident of a youth detentions

centre and had been referred for the possible diagnosis of FASD. Both her parents had been alcohol abusers. She had a long history of violence. Finally she had been detained for treatment of her violent behavior. She had the history of secondary disabilities, interrupted schooling, drug and alcohol abuse and incarceration. She had shackles on which her worker would not remove. At first E. refused to speak to me so I asked the worker about E..s’ background. E had been incarcerated because of her repeated violence to others, usually when under the influence of alcohol. “She is a model client” said the worker. “She has had only one violent episode. That was when she first came. She is cooperative and is attending school. We are so proud of her”. Eventually E.. became engaged in our conversation. I asked about the violent incident. “She pissed me off so I smashed her in the face”. “So what happened then?” I asked. “They left me in a black room. There were no lights or windows, no one to talk to. There was nothing to do. I hated it.” “Have you thought about hitting any one since then? I asked. “Lots of times” she answered. “If you have thought about hitting people lots of times why haven’t you done so? I asked. “If I did that they would put me back in the black room. I don’t want that” she replied. The next question was “how much do you think that if you hit someone you will be put back in the black room?. “ All the time” was her answer I do not know what happened to E.. after this visit. She never returned. My report stated that she likely had FASD but this would have to be confirmed with psychological testing according to our Canadian Guidelines for the diagnosis of FASD. I would like to believe that after her discharge she would have returned home reformed and able to follow a happier and fulfilling life. I think it more likely however that once she returned home her perseveration on the black room would cease and the next time she appeared in front of a judge on charges of assault he would say ” young lady you have shown that when you want to you can improve your behaviour. Obviously you have not learned your lesson yet” Then he would incarcerate her for a longer period and the cycle would be repeated. > A. was 23 years old when I first saw him. He had been adopted at birth. The diagnosis of FAS had been mentioned once in a report when he was 14 years old but had not been pursued. At the time of his first visit he was living in a youth hostel. A worker from the hostel had brought him regarding the possible diagnosis of FASD.

The diagnosis was eventually made. His family were able to provide me with all his records. He had cognitive, information processing and memory disabilities. At an early age he had demonstrated the secondary disabilities of disrupted schooling, inappropriate sexual behavior, trouble with the law, incarceration. These were followed later, as an adult, with inability to live independently and maintain employment. He had been managed or treated by twelve agencies / organizations; including two psychological assessments and two psychiatric assessments, prior to me seeing him. Previous diagnoses were ADHD, Oppositional Defiant Disorder, Transvestitic Fetishism with Gender Dysphoria and Learning Disabilities. On one visit I said to A… , pointing to his thick chart. “ All these treatments, places you stayed in, and here you are seeing me for similar problems.” “Yes”, he said cheerfully. Not much helped. “I did the best at ---------“. He referred to a well known treatment center for children. “What do you mean”? I asked. “Well I caused problems for a while and then they put me in the Bubble” “What was that? “It was a dark room with no lights, nothing to do and no one to talk to.” It had obviously been a bad experience for him. “After that I did what they told me to do.” “How much did you think that if you did not do what you were told you could end up back in the Bubble” I asked. “All the time” was his reply. His exact words. No doubt the treatment center considered A… a success. There was no indication in the files from the center of any follow up, and no mention of the “Bubble” I do not know to what extent isolation and sensory deprivation is used in Psychiatry at present. It certainly continues in the penitentiary system. In both cases it takes place in ignorance of FASD and Perseveration. Perhaps the most important aspect of FASD in this regard is sensory abnormalities. They are universal in FASD, to varying degrees. This means that for those with FASD isolation and sensory deprivation must be a living hell. No wonder that on some occasions the individual may dramatically comply, all be it temporarily. For those that are not able to comply the consequences are likely to be tragic.[Ashley Smith] How the psychiatrist or prison administration interprets isolation needs to be changed by understanding perseveration. The difficulty of interpretation is that not all individuals placed in isolation are FASD. Those that are not may be able to deal with their situation in imaginative ways that enable them to maintain their sanity. For those with FASD the reverse is true, unless they have the ability to perseverate, “all the time” on what is demanded of them.

Under these circumstances those with FASD will perseverate on processes that bring relief but are in conflict with the psychiatrist or prison authority, such as self harming or what is seen as damage to the cell. The implications of stuck in set perseveration and its different presentations and roles in the lives of individuals with FASD extends to all aspects of society. They are crucial in respect to the application of the law. This is especially the case in criminal law where lengthy incarceration, or even execution, may occur. > Z., a 14year old native girl with severe cognitive, memory, information and sensory disabilities had a repetitive alcohol problem. Her father called for help from the police. She was placed alone in a cell with no stimulation. She found comfort in picking the paint of the wall of the cell. She was requested to stop picking at the paint. When she did not do so she was tasered and placed in a straight jacket. The correct approach would have been to provide her with something to occupy her mind. In some cases it is possible to introduce and utilize positive perseveration. This will no doubt require a history of mitigating factors. > C.. was sixteen. He had significant cognitive disabilities but had not had psychological testing or a school individual education plan [ I.E.P. ] when I first saw him. This had resulted in loss of motivation and interest in schooling, which he skipped. With a deterioration in his behavior, seen as oppositional and defiant, his mother sought help. By this time we had made the diagnosis of FASD [ ARND ] but it had made no significant impact on his schooling. This was because of his attitude due to the late age of diagnosis, and the inability of the teachers to adapt to his needs. C. was placed in a residential group home with the aim of correcting his antisocial and disruptive behavior. He continued to behave in the same way refusing to go to school etc. Loss of privileges etc had no effect. In spite of all the problems at home he missed his family very much. I suggested that his mother explain to him that he needed to think continuously that if he did exactly what he was told he would be able to return home. Fortunately he was able to do this. It worked dramatically and he was home within a few weeks. The group home was of the opinion that their therapy had changed him. In fact after returning home he reverted to his previous behavior. The situation did improve somewhat when the school was finally persuaded to address his learning disabilities. I have many times asked “ If you were placed in a dark room, no windows, no sound, no one to talk to, nothing to listen to or play with, nothing to do- what would happen?” The answers from those with FASD are always similar. “ I would go mad or I would kill myself.

Yet isolation is still practiced in psychiatry and our prison system, and we know that many inmates have FASD. Successful therapeutic and correctional services will never be developed until the generalized executive dysfunction and stuck-in-set perseveration of FASD are understood, and the connection between the two acknowledged; as in the three executive functions described by Miyake and Friedman. Knowledge of the neuropsychological and sensory profiles of the individual will always be necessary. While safety of the public is paramount it should not exclude successful interventions based upon knowledge of generalized executive dysfunction, set shifting and stuck-in-set perseveration. Barry Stanley. Vienna, July 2015. For all those who live with the disabilities of FASD and in memory of Ashley Smith; born, New Brunswick, 29th. January, 1988; died alone, by her own hand, in isolation at the Grand Valley Institution for Women, Kitchener, Ontario, Canada. 19th. October, 2007. “She [Ashley Smith] had indicated to the staff that she was bored and was looking for attention and she wanted staff to enter into her cell so that she could fight with them”- ‐ Ms. Grafton, Security Intelligence Officer, Grand Valley Institution for Women, Kitchener, Ontario, Canada. “My life I no longer love I’d rather be set free above Get it over with while the time is right Late some rainy night Turn black as the night and cold as the sea Say goodbye to Ashley Miss me but don’t be sad I’m free, where I want to be No more caged up Ashley Wishing I were free Free like a bird” -From the Ashley Smith Report, New Brunswick Ombudsman and Child and Youth Advocate, June 2008.