Perseveration and FASD

1. Perseveration – The lens by which those afflicted with FASD interpret their relationships and environment.Accommodating Fetal Alcohol Spectrum Disorders:Hearts and Minds in the Downtown Eastside Vancouver, B.C. 15th October, 2014 barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

2. Perseverance “Perseverance, dear my lord, keeps honour bright….” William Shakespeare ~ Troilus andCressida. Act 3, scene 31. 150-3 barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

3. Perseverance -a complex process essential for executive and adaptive functioning. The Stream of Consciousness William James (1892). barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

4. Perseverance • Perseverance is a process of “taking hold”, and “letting go” to move on. • Historically we have only looked at the “taking hold” part. • We need to look at the “letting go” part in order to understand Perseveration, which prevents moving on. • “Conscious is always interested more in one part of its object than in another and welcomes and REJECTS, or chooses all the while it thinks”. William James barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

5. Perseverance requires 1- Emotional and cognitive recall of the past [experience] 2- Analysis and assessment of what is recalled, in the context of the present and anticipation of the future 3- Awareness and assessment of inner self and present environment, in relation to 1 and 2 barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

6. Perseverance – areas of the brain involved 1- Emotional and cognitive recall of the past - amygdala, hippocampus, HPA axis, medial temporal lobe, prefrontal cortex 2- Analysis and assessment of what is recalled, in the context of the present and anticipation of the future - “unimodal sensory-cortices, lateral and medial parietal and temporal areas orbitofrontal,medial frontal and dorsolateral prefrontal cortex, premotorcortex, insula, cerebellum, basal ganglia, amygdala and thalamus 3- Awareness and assessment of inner self and present environment, in relation to 1 and 2 Insular and anterior cingulate cortex, fronto-parietal networks, hippocampus connections, thalamus connections, amygdala. The development of all these areas of the brain is disrupted by PAE barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

7. BILL barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

8. Lessons I Learned From Bill Listen to the words spoken Deal with the world that is Bill’s, not mine Redirect, distract. Do not confront, Wait for Bill to stop perseverating on the issue, if possible. barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

9. Perseveration When the normal process of perseverance is interfered with in FASD, and an appropriate shift of focus is not possible, the process becomes one of Perseveration: executive and adaptive functioning are compromised. “She had lived as indifferent to safety and security as anyone well can, and that must have meant that she relied on the present moment---- that she leaned in against its grain---- in a way the rest of us do not know.----------------- She embraced the random, the contingent, the chaotic.” Nuala O‘ Faolain. The Story of Chicago May [ Epilogue page 302 ]. Riverhead Books. New York. 2005. barrystanleywww.barrystanleyfasd.comdocstocbstanley 31

10. History of Perseveration and FASD • References to perseveration and FAS go back to the 1980s, mostly in the context of behaviour i.e. transition reactions in the home and school settings. • The early explanations were- selfish, stubborn, often diagnosed as Oppositional Defiant Disorder barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

11. Transition Reactions are due to Interruption of Perseveration • 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. barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

12. But society’s view of those with FASD is distorted The behavior, especially Perseveration, of those affected is seen as an affront to society that is willful in nature, and not the manifestation of disorganized neurological development that it truly is. In order to understand we needs to look through the FASD lens. barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

13. The Hot Dog Story a daily occurrence for those with FASD The mistaken interpretation of those who do not understand fasd • They don’t learn from experience – not completely true. They may have a degree of knowledge but cannot apply it in the moment. • They are selfish- not true. They are not able to consider the needs of others because they are stuck in the moment. • Other wrong explanations of perseverative behavior. They are- stupid, attention seeking, not caring, not interested, lazy… barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

14. Perseveration, FASD, ADHD and the significance of psycho-stimulants ADHD is the most common other diagnosis. Psycho-stimulants increase focus [Perseveration]. There is an association between psychostimulents and cardiac deaths, and a possible association with suicide. PAE is the most common cause of cardiac abnormalities, if we include ventricular/atrial septal defects. There is increased risk of suicide with FASD Conclusion - those diagnosed FASD should -have a cardiac assessment before being prescribed Ritalin etc. -be followed closely for suicidal [and homicidal] thoughts when prescribed Ritalin etc. {The individual’s affect may not reflect their perseveration on suicide} barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

15. History of Perseveration “…According to some writers not only do we have a perseveration of mental processes, but also of forms of consciousness and of mental acts.” On the Perseverative Tendency. William S. Foster. 1914 “It is proposed that clinical features of prefrontal syndromes need not imply the presence of selective structural or biochemical damage to prefrontal cortex, and that a structurally diffuse CNS disease often masquerades as a selective frontal-lobe disease.” Varieties of perseveration: a comparison of two taxonomies. Goldberg E. 1986 barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

16. The Three Forms of Perseveration Stuck-In-Set. { Always seen with FASD? } Recurrent. { May be seen with FASD } Continuous. { May be seen with FASD } Sandson J. Albert M.L. Perseveration in behavioral neurology. Neurology. 1987 Nov: 37[11]: 1736-41 barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

17. Stuck-In-Set Perseveration • “Stuck-in-set perseveration, the inappropriate maintenance of a current category or framework, involves an underlying process deficit in executive functioning and is related neuroanatomically to frontal lobe damage.” Sandson J. Albert M.L. [1987] Question Which comes first Executive Functioning or Perseveration? or - are they both aspects of the same complex neurological process? barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

18. Areas of the brain associated with Perseveration and known to be affected by Prenatal Alcohol Exposure HIPPOCAMPUS PREFRONTAL CORTEX BASAL GANGLIA DOPAMINE SYSTEM - . mesolimbic pathway Schizophrenia, ADHD mesocortical pathway Schizophrenia, ADHD nigrostriatalpathaway Parkinson’s the tuberoinfundibular pathway transmits dopamine from the hypothalamus to the pituitary gland. Minor pathways[3] Ventral tegmental area [VTA] > amygdala VTA > hippocampus VTA > cingulategyrus VTA > olfactory bulb [Wikipedia. 2014] barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

19. Positive Perseveration in FASD{what you hear when you listen} 1- From the streets 2- For the sake of the children 3- Without support - relapse barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

20. Positive Perseveration in FASD • All different, but the same. • There are always exceptions to the “rule”- so be careful with expectations and conclusions. • No matter what the individual’s profile is- they will always require support in some way. • The early childhood environment influences how the neurodevelopmental disabilities of the individual will contribute to the individual’s belief systems and progress throughout the lifespan. barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

21. FORCED TEMORARY “POSITIVE” PERSEVERATION Does not work: only “positive” to the therapist/custodian The story of E. The story of A. The story of C. The story of Z. For positive change positive perseveration is necessary. barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

22. Forced temporary “positive” perseveration • Is never lasting • Is dangerous • Is misleading for the professional and the law • All “therapies” should be followed up long term and the results included in the record. • More cooperation required between agencies, doctors, therapists and the law - with appropriate safeguards for the individual. barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

23. Belief Systems Those with FASD do have belief systems. • Explore them indirectly by observing and listening. • Endorse them if positive and helpful. • If negative, do not challenge or confront. Depending on the level of disability encourage different focus.

24. Diagnosis brings relief, in most cases. The diagnosis of FASD brings relief that often multiple diagnoses from the DSM have failed to do. - especially when illustrated with true stories of others with FASD. The teenager who wants to be like the rest is more likely to resist the diagnosis. The adult who has suffered so much is more likely to welcome the diagnosis. barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

25. Being Bored - a disturbing mental state of cognitive and emotional chaos N. 19yrs - diagnosed at 5yrs “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” M. 27yrs – diagnosed at 23yrs “ .. like a beehive full of bees buzzing around in my head” “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 Her father, ….. said “his daughter was picking paint off the cell walls out of boredom”. 14yrs. Tasered and straight jacketed while in a holding cell devoid of stimulation. http://www.cbc.ca/canada/story/2009/02/03/stungun-advocate.html barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

26. Savanna Pietrantonio"FASD Survival Strategy Teacher" “bored a lot, more thoughts, not nice, better with alcohol “ bored is worse than being angry” After understanding perseveration and having dialectical behavioural therapy and mindfulness therapy- “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 best advantage.”  barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

27. “Therapeutic” Perseveration • what those with FASD do when bored is often seen as a process of pleasure, and not a process of relief that it truly is. • the distorted lens of society views these processes of relief as positive and rewards them, or negative and punishes. - both are based upon incorrect premises. “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” - The Unengaged Mind: Defining Boredom in Terms of Attention, John D. Eastwood Perspectives on Psychological Science 7(5) 482– 495 barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

28. CORRELATION > CAUSE AND EFFECT Correlation - a mutual relationship or connection between two or more things Because there is a correlation it can not be assumed that there is a cause and effect. But, there cannot be cause and effect without correlation. Where there is a strong, significant correlation relating to the health of individuals and society the medical profession has a moral and ethical duty to investigate possible cause and effect. barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

29. FOLIC ACID AND SPINA BIFIDA 1970s- 1980s Correlation – Spina Bifida was related to Folic Acid deficiency in the mothers. 1991 – Cause and Effect confirmed - Publication of the results from the Medical Research Council Vitamin Study [U.K.] 1992, 14 months later the Centers of Disease Control and Prevention [U.S.A.] recommended Folic Acid to reduce incidence of Spina Bifida barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

30. MENTAL ILLNESS AND PAE/FASD 1996Report – University of Washington, Seattle , U.S.A. Streissuguthet.al 1996 barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

31. Neurotransmitters, Neuromodulator Systems and Hormones affected by Prenatal Alcohol Exposure. • - Dysregulation of Insulin Growth Factors • - NMDA glutamate receptors > synaptic plasticity and memory systems • GABA [a,b,c] gamma-aminobutyric acid > C.N.S. inhibitory [and excitatory during development] neurotransmitter > cell membrane function • - Reduced CholineAcetyltransferase > decreased acetylcholine > Hippocampus > memory – Neuromodulator > platicity, arousal, reward, sensory perceptions and • sustained attention. • Hydroxylase > mood, appetite, sleep, memory, learning • - Decreased Dopamine receptor function > reward learning, reward seeking. Decreased levels of Dopamine in the Prefrontal Cortex, Ventral Tegmental Area • - Hypothalamic-Pituitary Axis > differing activation > stress responsiveness. Male/Female differential stress responsiveness > protective role of estrogens. • Inhibition of Serotonin synthesis and expression of serotonin precursor, tryptophan • The correlation between prenatal alcohol exposure and the abnormalities of the development and function of neurotransmitter systems goes back to the 1980s

32. CORRELATIONS THAT SHOULD BE EXPLORED • Normal brain anatomy and function with the brain anatomy and function of FASD e.g. as in Perseveration. • Diagnoses from the DSM and FASD – including the brain anatomy and function of DSM mental illnesses with those of FASD. • The role of Epigenetics in brain development with the role of Epigenetics on the brain development of FASD and Mental Illnesses. barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

33. Executive Functions are {Kieran O’Malley} • A Group of Cognitive Abilities • Self-Regulation of Behaviors • Sequencing of Behaviors • Cognitive Flexibility • Response Inhibition • Planning • Organization of Behavior • A “Future-Oriented” Process • Goal Directed • Delayed Gratification • An Integrative Process • Perception • Attention • Memory • Motor • General Intelligence barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

34. Areas of the brain associated with Executive Functioning Prefrontal Cortex - with connections to Thalamus, Basal Ganglia, Hippocampus, Amygdala These areas are all affected in FASD, by prenatal alcohol exposure. Which comes first Executive Functioning or Perseveration? or - are they both aspects of the same complex neurological process? “Instead, the emerging view suggests that executive function is mediated by dynamic and flexible networks…” Rebecca Elliott. [2003] “Our findings support the idea that stress-related events occurring before birth have long-lasting effects on brain function and behaviour, and suggest that the impact of ethanol on cognition is not only dose and duration-dependent, but also critically influenced by early life experiences.” Van Waes V. [2009] “These findings are unique in that they demonstrate for the first time that deficits in neurogenesis associated with prenatal ethanol consumption appear later in life.” Gil-Mohapel J et.al.2014 barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

35. Questions Is Stuck-In-Set Perseveration common to all those diagnosed FASD? Why are the correlations between the neuroscience of Perseveration and FASD/Prenatal Alcohol Exposure not being explored? Which comes first Executive Functioning or Perseverance ? - Are they both aspects of one simultaneous complex neurological process? What is the relationship of Perseveration caused by Prenatal Alcohol Exposure to the Perseveration of Mental Illnesses? What is the significance of the Perseveration of FASD to Criminal Activity – how does it apply to Culpability and Criminal Responsibility? barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

36. barrystanleywww.barrystanleyfasd.comdocstoc bstanley31 Parallel Tracks The Brain of Mental Illness The Brain of FASD Psychiatry and PAE/FASD are on parallel tracks. The Psychiatry train is a closed train. Those on the PAE/FASD train are reaching out but are not seen or heard.

37. barrystanleywww.barrystanleyfasd.comdocstoc bstanley31 Parallel Tracks The Brain of Neuroscience The Brain of FASD Neuroscience and PAE/FASD are on parallel tracks. The Neuroscience train is a closed train. Those on the PAE/FASD train are reaching out but are not seen or heard.

38. barrystanleywww.barrystanleyfasd.comdocstoc bstanley31 Parallel Tracks The Brain of Epigenetics The Brain of FASD Epigenetics and PAE/FASD are on parallel tracks. The Epigenetic train is a closed train. Those on the PAE/FASD train are reaching out but are not seen or heard.

39. What to do? No amount of education or training of those with FASD will be successful if the caregiver, worker, mentor… does not understand the disabilities of FASD, and how they apply to the individual. barrystanleywww.barrystanleyfasd.comdocstoc bstanley31

40. What to do? What works for one may not work for another. The individual’s neuropsychological profile always needs to be considered. Also, knowledge of the individual’s sensory profile is crucial. JodeeKulpwww.Betterendings.org barrystanleywww.barrystanleyfasd.comdocstoc bstanley31