The Resting State and its Default Mode: in those with FASD.

1. XXXVth International Congress on Law and Mental Health. Prague. 2017. The Resting State and its Default Mode: in those with FASD. This presentation is a review: a conceptual analysis. I was not able to present it in Prague, because of ill health. It is a continuation of the one given in Vienna in 2015. Because mainstream research does not take into account the role of prenatal alcohol exposure it has been necessary to demonstrate the correlations between the neurological networks and the involved parts of the brain; the focal and generalized conditions related to those parts of the brain, including mental health conditions; and the known effects of prenatal alcohol exposure on those parts of the brain and the clinical cases that support those correlations. Quotes have been provided to indicate the connections and correlations between prenatal alcohol exposure, FASD, direct and indirect research. The biochemical aspects of these connections and correlations are not explored, although they certainly exist. Epigenetics, which we now understand is the main process by which the brain functions, is also not explored. This Presentation is addressed to those researchers who have little or no knowledge of FASD [ fetal alcohol spectrum disorder ], yet are engaged in research that is very much relevant to PAE [ prenatal alcohol exposure ] and FASD. Abstract This presentation includes a brief review of research into boredom, normal brain resting state and corresponding default mode[s]. The possible equivalence to the brain activity of those with FASD in relation to “being bored” is explored, with reference to brain anatomy and function. Actual FASD clinical cases are presented to illustrate what they mean by “boredom”: describing the role of perseveration as a relief process. Finally, the manner in which these processes are misinterpreted is explored, with implications for Psychiatry and the Justice System. Keywords: Prenatal Alcohol Exposure, Fetal Alcohol Spectrum Disorder, boredom, perseveration, brain, Resting State Default Mode. So, how is the development of the resting state and its default mode network affected by PAE, and how does it relate to the “boredom” of those afflicted with FASD? Resting State and its Default Mode. The resting state is the state of relaxation. The mind is free to wander and meander through memories and present situations: free of physical activity or focused cognitive processes. A default mode is the network of brain circuits, and related brain areas, corresponding to human functions.

2. The resting state default mode consists of those areas of the brain that are active and connected during the resting state. The connectivity may be assessed anatomically and/or functionally. Anatomy- The areas of the brain and their connections that compose the resting state default mode are known to be disrupted in FASD, as a consequence of PAE. While the existence of the resting state is not questioned, its purpose is still being debated. However, it is generally accepted as being significant for overall brain function. One concept is that it is preparatory for our conscious, effort related human functions. That said, there is research that indicates a majority of us prefer not to be in the resting state, seeking distinct thoughts or activities. However, other research reaches opposite conclusions. Whatever the case one can well imagine how, with developmental abnormalities of the relevant neural circuits, those with FASD struggle with chaotic thoughts and emotions; with understanding and interpreting events they are involved with; and especially coping with “boredom”. Interestingly, the energy required for maintenance of the resting state default mode is greater than that required for maintaining the default modes for explicit cognitive and physical tasks. At this time there is only one research paper that explores and confirms the interference of the resting state, anatomically and functionally, in those with FASD due to PAE. However, the extensive research into the resting state and its default mode shows overwhelming correlations with the consequences of PAE on the developing brain. Boredom. Boredom has been defined and identified as consisting in a range of degree and impact. One description is “boredom is the aversive state that occurs when we (a) are not able to successfully engage attention with internal (e.g., thoughts or feelings) or external (e.g., environmental stimuli) information required for participating in satisfying activity, (b) are focused on the fact that we are not able to engage attention and participate in satisfying activity, and (c) attribute the cause of our aversive state to the environment.” “It is often perceived as a fairly trivial and temporary discomfort that can be alleviated by a simple change in circumstances, such as finally being called into the doctor’s examining room. However, boredom can also be a chronic and pervasive stressor with significant psychosocial consequences. Indeed, boredom is even associated with mortality,lending grim weight to the popular phrase - bored to death.” “Most existential definitions of boredom include a sense ofemptiness, meaninglessness and a paralysis of urgency—thebored individual is unable to find impetus for action, is withdrawn from the world, and experiences life as meaningless” . Theories of the process 1- Existential -Much of what is described could be summarized as feeling different/no purpose. 2- Arousal- attributes boredom to inappropriate sensory input, perceived[cognitive] or actual. Cognitive - inability to engage or maintain attention, attention failure, negative affect, inadequate external stimulation. “In this regard, boredom can be characterized by low arousal associated with inadequate external stimulation, as well as high internal arousal and frustration associated with the struggle to keep attention focused” The various theories, definitions and causes to which boredom is ascribed do not take into account the possible/probable role of PAE/FASD in the subjects of research. This can account for the diversity of results and opinions on boredom.

3. There is no research re. PAE, FASD and Boredom. However, in the present 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, hippocampus, amygdala, insula] Correlations include- Self harm suicide, hostility/anger, drug/alcohol, abuse, work issues, school issues, Boredom has been correlated with mental illness, psychological and physical health, and social issues: and is a negative factor in their management and treatment. Boredom is also associated with issues attributed to lack of impulse control or interference with continuous vigilance. It is associated with emotional dysfunction, such as alexithymia and of feeling stuck, with difficulty in self explaining boredom. - All known issues for those with FASD. “Boredom is distinguished as trait/endogenous or state/reactive[-to environment].” Whether or not this is valid, in the person with FASD they must be simultaneous and interactive: compatible with disrupted executive function, inattention and hyperactivity [195] that are described as etiological or consequential in boredom research, and are daily issues for those with FASD. Up to now all research into boredom attributes personal choice as preponderant to the cause. In fact, for those with FASD personal choice is not part of the process in defining or managing their state of “boredom’. For them, their underlying developmental neurological abnormalities, together with passed and present environments, determine when they are bored, and how they respond. This is not to say that in some circumstances they cannot learn to respond in more socially acceptable ways. FASD and THE STATE OF “BOREDOM” CLINICAL CASES . [XXXIVth International Congress on Law and Mental Health. Vienna, 2015.] 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: 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

4. 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. M. 27 years: diagnosed FASD at 23 years. Being bored “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.” E.. was a teenager referred by a psychiatrist. She was a resident of a youth detention 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

5. 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

6. 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. 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. Successful therapeutic and correctional services will never be developed until the generalized executive dysfunction, stuck-in-set perseveration, and ‘boredom’ of FASD are understood, and the connections between them acknowledged: as in the three executive functions described by Miyake and Friedman. CONCLUSION Research shows 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, hippocampus, amygdala, insula] For those with FASD the process consists of severe, uncomfortable and uncontrolled thoughts and emotions that can only be eliminated by the process of perseveration. It is likely that this chaotic state is the consequence of developmental dysfunction of the resting state default mode, and its disturbed interaction with the rest of the FASD connectome, including other abnormal default modes and network hubs. Dedicated to 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,

7. June 2008.