1. 3 rd Annual Addictions & Mental Health Conference Toronto, ON May 24 to 26, 2015 Prepared by: ALICE M. BELLAVANCE, RPN Chief Executive Officer, BISNO Based on research from the: U.S. Department of Health & Human Services Substance Abuse and Mental Health Services Administration (SAMHSA) Fetal Alcohol Spectrum Disorders (FASD) Centre for Excellence 1

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3.  FAS = Fetal Alcohol Syndrome  ARND = Alcohol Related Neurodevelopmental Disorder  ARBD = Alcohol Related Birth Defects  FASD = Fetal Alcohol Spectrum Disorders 3

4.  Behaviour often appears intentional or purposeful  Typical approaches to “difficult/responsive” behaviours are often unsuccessful  Many individuals living with FASD have other challenges  Not all behaviour can be categorically be said to be due to FASD  Pre-natal alcohol exposure causes brain damage resulting in FASD  As such we can begin to understand why individuals with FASD experience limitations 4

5.  BASAL GANGLIA especially the caudate nucleus:  Cognition  Emotion  Motor activity  CORPUS CALLOSUM:  Connects 2 halves of the brain  facilitates communication between the 2 halves 5

6.  FRONTAL LOBES:  Controls emotional responses & processing of humour  Controls expressive language  Assigns meanings to words  Processing of information  Determining how to act in a specific situation If the brain were so simple to understand, we’d be too simple to understand it 6

7.  HIPPOCAMPUS:  Memory  Learning  Emotion  Aggression  AMYGDALA:  Fear  Anger  Aggression 7

8.  Brain imaging studies indicate size reduction in the cerebral vault, cerebellum, basal ganglia, corpus callosum, as well as overall brain size  Greater amounts of gray matter and lesser amounts of white matter in some areas and less symmetry  These brain changes can be related to changes in behaviour, cognitive functions and some physical activities  Interference with the development of myelin has also been found die to prenatal alcohol exposure 8

9.  Study conducted at the University of Washington  Frontal lobes were found to be disproportionately smaller in those with the facial features of FAS  MRI’s previously done were mostly read as normal  Even those with mild ARND had structural brain damage by scan * We need to determine whether these structural differences have functional consequences with population based norms 9

10.  Those with prenatal alcohol effects scored similarly to controls on a one-back test (does this picture match the last one you saw?)  Those with prenatal alcohol effects scored significantly poorer on the two-back test (does the picture match the one you saw two back?) * The level of activation in the Dorsolateral Prefrontal Cortex is significantly less in those with FASD * This is a measure of working memory 10

11.  Studies examine how prenatal alcohol exposure and other early nutritional or environmental insults affect neurobiological systems in an animal model and implications for intervention * Altered hormonal, immune and behavioural function * Special focus on stress 11

12.  INITIAL FINDINGS INCLUDE:  Maternal alcohol consumption increases HPA (hypothalamic-pituitary-adrenalin) activity & alters HPA regulation in the mother & offspring  HPA is the stress axis  This HPA hyperactivity is observed under baseline conditions & following exposure to stress  HPA may be the common pathway for early adverse life experiences  Interventions targeted to normalizing the HPA axis may provide a novel approach to interventions 12

13.  Animal research on choline as a possible protective factor  In pregnant mice who have been given ethanol, choline appears to mitigate the effects of the ethanol  Effects of ethanol on the fetus seem to lessen even if administered after the ethanol exposure  Choline administration has a positive effect on the cognitive abilities when given to mouse pups  Effects, amounts & form of choline in humans is not known  Human studies are beginning 13

14.  This does not mean that a woman can drink & take choline & have a healthy baby  This does mean that the use of choline during pregnancy should be discussed with the woman’s physician * Good prenatal care is important * As long as stigma remains, women who are drinking during pregnancy are less likely to seek prenatal care  Studies using Aricept are underway with Joanne Weinberg 14

15.  It helps us to be proactive in identifying difficulties & developing interventions  It can reduce anger & frustration  It can lead to better prevention  It helps to prove how common it is * Hopefully leading to funding to address prevention & treatment  It can improve outcomes for agencies & systems * Reducing recidivism by providing supports required for success 15

16.  Recognition that there is a reason they have some of the difficulties that they do * More amenable to support regarding health & social service issues  The realization that they are not just “stupid”, “bad” or “crazy” * The feeling of being “bad” over time leads to behaviour that reinforces the image * The feeling of being “stupid” often leads to truancy or acting out in school 16

17.  The ability to anticipate things with which they might have difficulty & be proactive in developing techniques to be successful * E.g. recognizing difficulties with multiple directions & asking for directions or instructions to be repeated * Difficulty remembering what needs to be done & developing lists, posting them where they will be seen & developing a routine to review them regularly  Less resistant to structure & protective supervision 17

18.  Seeing oneself as not able to do anything, thus giving up  Dealing with others’ view that they are not competent  Thinking that everything he or she experiences is because of FASD * Not recognizing the need to get help for other problems e.g. depression, trauma, domestic violence, other mental health issues  Realization that FASD is a life long challenge  Negative self-image is shaken & need to redefine perception of self 18

19.  Potential for financial support i.e. tax benefit, disability pension  Recognition that its a brain based disorder  Reduction of frustration & anger towards their loved one  Reduction of self-blame  Opportunity to heal from years of confusion & trauma  Ability to not take behaviour personally  Ability to identify & build on strengths  Ability to “kvell” 19

20.  Feelings of hopelessness  Linking all the difficulties to FASD * Overlooking other reasons for difficulties e.g. co-occurring mental health & other disorders * Not considering possible medical reasons for behaviours or other difficulties  Concern about “labeling” their loved one  Sense of guilt, failure, shame, stigma, anger  Realization that there are life long issues requiring lifelong support  Need to confront issues of loss & grieving 20

21.  Ability to develop successful interventions in prevention & treatment  Ability to view the individual as having a disability rather than being “noncompliant” * Move beyond anger & frustration  Ability to improve outcomes  Increased opportunity for service providers to feel successful  Development of increased services based on recognition of the extent of FASD  Increased ability to make a difference 21

22.  Need to adapt services to the needs of the individuals & their families  Need to implement truly individualized approaches – feeling that it is more appropriate (or easier) to treat everyone the same  Lack of needed services  Inability to secure funding for required services  View that all behaviour is due to FASD – missing possible misdiagnosis or co-occurring issues that need to be addressed 22

23.  Need to find funding for services  Dealing with competing priorities e.g. brain injury, autism  Need to raise the issue of alcohol use (some funders & politicians may well have FASD in their families)  Distorted view that alcohol use by women who are pregnant is a conscious decision *Therefore, women should be punished 23

24.  Individuals living with FASD often fail with typical education, parenting, treatment, justice, vocational, housing & benefit programs * They often look “normal” * They tend to be very verbal * They say they know what they need to & don’t follow through * We take what they say at face value  We utilize typical approaches, such as the notion that the way people learn is to experience the consequences of their behaviour – if we utilize that concept, we often place the individual at risk of ending up homeless, in jail or dead 24

25.  Repeatedly in treatment settings having “failed” treatment * Multiple admissions for substance abuse treatment * Multiple admissions for mental health treatment  Difficulty in school, especially middle & high school  Repeated difficulty maintaining employment  Repeated trouble with the law – especially for committing the same crime more then once and/or repeatedly breaching probation/parole  Frequently homeless 25

26.  Caregivers with unrecognized FASD are often labeled as neglectful, uncaring or sabotaging  We provide multiple verbal instructions  Especially in child welfare: * We place their children * We tell the parents what they need to do to get their children back – completion of multiple tasks is expected * They say they know what they need to do but they don’t follow through on instructions e.g. appointments, visits, phone calls, treatment, housing, employment, income  We threaten termination of parental rights 26

27.  They fail benefit programs that are time limited & based on the concept of willful behaviour & motivation as the key to success  They fail in typical treatment & parenting programs  Women may have another child with FASD  Remember that an FASD is always a diagnosis for a family * If a child is identified with an FASD, we must examine the siblings, parents & other kin * We must view the whole family as the focus of attention, assessment and support 27

28.  Friendly  Talkative  Strong desire to be liked  Desire to be helpful  Naïve & gullible  Difficulty identifying dangerous people or situations  Difficulty following multiple directions or rules – may be able to recite the rules but not know how to follow them  Interrupt group activities; act inappropriately; don’t follow the course of group discussions  Literal/concrete thinker 28

29.  Do “exactly” as told  Difficulty with recognizing the consequences of actions (cause & effect)  Difficulty with the concept of time  Difficulty with a sense of space  Difficulty in level, point or reward systems  Difficulty managing money  Difficulty with sarcasm, joking, similes, metaphors, proverbs, idiomatic expressions 29

30.  Clean your room  Take a shower  Go take a hike  You’re shooting yourself in the foot  Go to your room & think about what you did wrong  Don’t run across the street  Don’t drink & drive  Wait your turn  Follow the rules  Do what I told you to do  Call with any questions 30

31.  Modeling the behaviour of those around them  Inconsistent in abilities  Don’t hold a grudge  Do better one on one  Repeat mistakes  Frustrating but likeable  Difficulty correctly reading social cues  Risk of repeated homelessness  Risk of repeated interactions with the criminal justice system 31

32.  People with FASD are at risk for HIV & sexually transmitted infections  Difficulty avoiding dangerous situations  Difficulty negotiating safe sex  Difficulty remembering to use safe sex techniques  For people with an FASD, the approach to prevention of HIV & sexually transmitted infections must be different * Literal * Repeated * Role playing of situations the person might find him or herself in 32

33.  For people with a co-occurring FASD & HIV, or sexually transmitted infection, treatment approaches need to be different  Treatment needs to be broken down to one step at a time  Medication schedules need to be simplified  Direct one on one support needs to be provided to attend appointments & follow treatment regimen  Discussions about the importance of treatment & issues regarding re-infection need to be repeated – always check for true understanding 33

34.  If an FASD is not recognized, a misdiagnosis may be made  Treatment may not be effective  If FASD is not recognized as a co-occurring disorder, typical treatments for the disorder are used * Treatment may not be effective due to information processing issues in FASD 34

35.  96% had 1 to 10 mental health disorders * 59% major depressive episode * 22% manic episode/bipolar disorder * 7% schizophrenia * 77% PTSD  95% had been physically or sexually abused during their lifetime  79% reported having a birth parent with an alcohol problem 35

36.  40 were deceased –homicide -suicide -accidental death  40 were unable to participate due to circumstances 36

37.  ADHD  Schizophrenia  Major depression  Bipolar disorder  Addiction  Anxiety Disorder  PTSD  TBI/ABI  Sensory Integration Disorder  Reactive attachment disorder  Organic Tic disorder  OCD  ODD/Conduct disorder  Medical disorders e.g. seizures, heart abnormalities 37

38.  ADHD  ODD/Conduct disorder 38

39. FASDADHDODD BEHAVIOURDOES NOTCOMPLETETASKS Underlying cause for the behaviour May or may not take in the information Cannot recall the information when needed Cannot remember what to do Takes in the information Can recall the information when needed Gets distracted Takes in the information Can recall the information when needed Chooses not to do what they are told Intervention for the behaviour Provide one direction at a time Limit stimuli and provide cues Provide positive sense of control, limits and consequences 39

40. FASDADHDCONDUCT DISORDER BEHAVIOURTAKES RISKS Underlying cause for the behaviour Does not perceive danger Acts impulsively Pushes the envelope; feels omnipotent Intervention for the behaviour Provide mentoring; use repeated role playing Use behavioural approaches (e.g. stop & count to 10) Use psychotherapy to address issues; protect from harm 40

41. FASDAdolescent Depression Adolescent Bipolar Disorder Acting out antisocial behaviour Misreading social cues; modeling others; difficulty communicating thoughts & feelings Depression Mania or hypomania Provide a mentor to model positive behaviours; utilize a lot of role playing Psychotherapy to address issues; protect from harm; medicate (antidepressants) with careful monitoring Psychotherapy to address issues; protect from harm; medicate (mood stabilizer) 41

42.  Adolescent depression  Bipolar disorder  Intermittent Explosive Disorder  Autism  Asperger’s Syndrome  Reactive Attachment Disorder  Traumatic Brain Injury  Antisocial Personality Disorder  Borderline Personality Disorder 42

43.  Early language development may be delayed  Often verbal output without a lot of content  Verbal receptive language is more impaired the verbal expressive language * A person with an FASD may be able to talk a good game but not be able to process or use all of what they hear * They will often do what they think they need to based on the pieces they have processed – this will frequently look like purposeful oppositional or uncooperative behaviour  Verbal receptive language is the basis of most of our interactions with people 43

44.  Parenting techniques  Elementary & secondary education  Child welfare  Judicial system  Treatment * Motivational interviewing * Cognitive behavioural therapy * Group therapy * AA/NA Groups  Awareness campaigns 44

45.  Court proceedings  Requirements in jail, correction &/or detention centres  Correspondence related to any of the above 45

46.  Difficulty with social language  Naïve & gullible  Easy marks for negative manipulation & abuse  Lack of supports * Often have few or no supports; may not be “in the system” * Majority of their supports are professionals or family * Loss of support of parents as they get older & their parents are no longer able to provide support or they’ve died 46

47.  Sporadic in keeping appointments  Difficulty doing things on their own  Consistently get into difficulty with others  Viewed as manipulative, unmotivated & non- compliant  Problems in programs rely on: * Verbal receptive language skills * Processing information outside of sessions * Making life decisions on one’s own * Following through on one’s own * Asking for help when they need it (lacking insight into their limitations) 47

48.  Wander away, “fade out’, “space out” and/or talk inappropriately in group situations  Need tremendous amount of one-to-one support  Most treatment programs do not allow external supports due to confidentiality requirements for other individuals in treatment  Seem to have the same issues from week to week  They “just don’t get it” 48

49.  Identify strength & desires in the individual * What do they do well? * What do they like to do? * What are their best qualities? * What are your funniest experiences with them?  Identify strengths in the family  Identify strengths in the providers  Identify strengths in the community – include cultural strengths when appropriate 49

50.  Friendly  Likeable  Verbal  Helpful  Caring  Hard worker  Determined  Have points of insight  Good with younger children*  Not malicious  Every day is a new day *D. Dubovsky: Drexel University College of Medicine 1999 50

51.  Simplify the individual’s environment * Simplify routines * Simplify the person’s room * Be consistent in activities & times  Provide one direction or rule at a time * Review directions & rules regularly * Check for true understanding * Talk about how to help the person follow the direction or rule  Use a lot of repetition 51

52.  Use repeated role playing, preferably with videotaping  Identify strengths in the individual, family & providers  Provide a lot of one-to-one physical presence  Softer lighting, softer colours, softer sounds  Use short term consequences  Do not use natural consequences; especially if they put the person at risk 52

53.  Be aware of and discuss, misinterpretations of words or actions of others when they occur  Find something that the person likes to do & does well (that is safe & legal) and arrange to have the person do that regardless of behaviour  Create “chill out” spaces in each setting  Use literal language  Use first person language 53

54.  Do not use metaphors or similes  Do not use idiomatic expressions & proverbs * A little bird told me * A day late & a dollar short * People in glass houses shouldn’t throw stones * He’s a sitting duck * I’m all ears  Be careful about joking with the person  Think about how what you might say could be misinterpreted 54

55.  He’s a child with FASD not “he’s an FASD kid”  A person affected by prenatal alcohol exposure, not “the affected person”  A mother with FASD, “not an FASD mom”  She has intellectual challenges, not “she’s mentally retarded”  He has a mental illness, not “he’s mentally ill”  He has schizophrenia, not “he’s schizophrenic”  No one is “FASD” although a person may be living with the effects of FASD 55

56.  Set the person up to succeed * Be creative * Use mentoring programs: * The person with an FASD having a mentor * The person with an FASD being a mentor * Interview, train and supervise mentors * May need to change the definition of success  View FASD as a life long disorder * Services cannot be short term * It doesn’t mean that people will need intensive services for their lifetime 56

57.  Ask about prenatal alcohol use in all assessments  Limit the number of meetings per week  Go to the same meetings on the same days each week  Have someone be responsible for taking the person to each meeting for a least 6 months * Discuss each meeting with the person  Utilize open meetings if necessary  Don’t view inability to follow through as a lack of motivation 57

58.  Discuss desires for social interactions  Be aware of & discuss, misinterpretations of words or actions of others when they occur  Provide a socialization coach * To form a positive relationship * To model social interactions for the individual in vivo * To do activities with the person * To discuss interactions * To provide immediate feedback & alternatives 58

59.  Indentify the interests of the individual  Provide a job coach  Help the individual learn one step of the job at a time  Keep the job coach with the individual for at least 6 months * To address the social aspects of the job * To deal with problems as they occur, not days later 59

60.  Educate management on the job as to the needs of the individual & best ways to approach the person  Identify a person to whom the individual can go when there is an issue/problem  Provide positive feedback  Follow-up regularly; do not wait for the person to come to you 60

61.  Anticipate possible difficulties for a person with an FASD  Arrange for a way to ensure that the person’s rent is paid monthly if that’s a problem  Limit the number of rules  Break down expectations to one at a time where possible  Provide the person with a mentor  Arrange for someone to work with the individual to clean their room or apartment, do laundry, etc. * “Once & done” should not be an option 61

62.  Do not rely on verbal processes  Be careful about the words that are used * Be literal, not abstract  Do not expect the individual to think about things on their own & make decisions about their life  Break things down to one step or rule at a time  Utilize supportive psychotherapy rather than cognitive behavioural therapy approaches  Recognize suicide risk 62

63.  In addition to recognizing possible co- occurring disorders & misdiagnosis & the secondary disabilities of having FASD, it is essential to keep in mind that individuals with an FASD go through typical developmental stages, although possibly at different times  Some behaviours may be expressions of normal development  It may be helpful to ask yourself “what age of development does this behaviour feel, like” 63

64.  Disruptions in development affect their actions * If they look “normal” & are intelligent, we often dismiss this possibility  Difficulties in early affect regulation can impact later behaviours  It is essential to consider development & affect regulation in planning interventions for individuals with an FASD 64

65.  Do not take lack of follow through as lack of motivation  Identify possible buddies (e.g. family, friends, church, or other organizations) to ensure the person gets to their appointments, etc.  Establish a mentor/coach approach  Change rewards based systems (e.g. point, level or sticker systems)  Re-assess concepts of dependency & enabling 65

66.  Women with an FASD are at high risk of giving birth to a child with FASD * Successful treatment for these women (needing to recognize their FASD) is an essential prevention technique * Successful treatment for women at risk is cost effective  Utilize a strengths based approach  Modify typical approaches to take into account the co-occurring FASD 66

67.  Individual therapy  Group therapy  Point, sticker, star & level systems  Motivational interviewing  Cognitive Behavioural Therapy (CBT)  Screening for alcohol use 67

68.  Parenting  Education  Prevention efforts  12 step programs  Any approach that relies on verbal receptive language processing  Zero tolerance policies 68

69.  FASD is one of the few birth defects that is 100% preventable  There is no known safe amount of alcohol to use during pregnancy  There is known safe time to drink during pregnancy  Most women do not know when they become pregnant  The only proven safe amount of alcohol to drink during pregnancy is NONE  Fetal alcohol spectrum disorders can occur in any community where women drink 69

70.  A person may have FASD if he or she: * Does not respond the way others do to typical approaches in parenting, teaching, treatment, discipline * Doesn’t seem to learn from mistakes * Has periodic outbursts that seem to come from nowhere & when they are over, the child is fine * Is erratic in performance * Seems to “get it” one day & not the other * Is very verbal, often interrupting & appearing rude * Repeats the same negative behaviour & always surprised when in trouble 70

71.  A person might have an FASD if he or she: * Doesn’t follow multiple directions * Wants to do well but consistently “messes up” * Seems to not understand why he or she is in trouble * Can “talk the talk” but not “walk the walk” * Has the lowest number of points or stars or is on the lowest level fairly consistently * Has a history of substance use in the family 71

72.  A caregiver might have an FASD if he or she: * Appears co-operative on the surface but doesn’t follow through * Doesn’t follow through on multiple directions/tasks * Doesn’t show up regularly at appointments on time * Doesn’t schedule &/or get the child to appointments * Appears to be neglectful or uncaring * Has co-occurring disorders * Has a history of substance use in the family * May be homeless 72

73.  Change interventions to promote success * One direction at a time * Provide support to help the person succeed * Dependency & enabling are not necessarily “bad” * Repetition, repetition, repetition…as a support * Identification of & building on strengths  Ask caregivers about the possibility of prenatal exposure * Ask in a way that promotes honesty * Talk about the importance on knowing in order to help the family best * Discuss alcohol use before knowing one is pregnant 73

74.  Environmental alterations * In various settings  Occupational, Speech & Language Pathology &/or Physiotherapy as needed  Classroom modifications  Neuropsychological assessment  Mentors  Family support, including respite  Linking families together 74

75.  Art therapy * Identify creative talents of the individual  Animal assisted therapy * Utilizing animals for individuals with an FASD * Having individuals with an FASD train therapy animals  Sports programs with appropriate supports  Mutual aid support groups  Peer mentoring with support for both individuals with an FASD & their families 75

76.  Flexibility is essential in addressing FASD * Flexibility in eligibility for services * Flexibility in intensity & timing of services  Creativity in the identification of services needed for the individual to do his/her best  Identifying & supporting strengths & validating accomplishments is essential  The spectrum of FASD are much more common than many other disorders such as Autism * The incidence in systems of care is significantly higher * Most individuals with an FASD will not be diagnosed 76

77.  Correctly recognizing & addressing FASD (in terms of prevention & treatment) can reduce long-term costs  Correctly recognizing & addressing FASD can improve outcomes for individuals, families, agencies, systems & communities  It is impossible to work successfully in most settings without having a firm working knowledge of FASD  We need to foster interdependence 77

78.  We want to help people to succeed * Whatever it takes is an important attitude * Ask the question “what does the person need in order to be successful (function at their best) & how do we help them to achieve that * Positive outcomes fir the person means positive outcomes for individuals, families, agencies, systems & communities  FASD is a human issue 78

79.  FASD is about people; do not lose sight of that  FASD affects the lives of individuals, families, agencies, systems & communities  It’s essential “to really care”  People with FASD & their families have great potential  We need reminders of what has been accomplished * Especially when things are not going well  Always remember that addressing FASD can be a matter of life & death * What you do concerning this issue can save lives! 79

80.  Nor West Community Health Centre * www.norwestchc.orgwww.norwestchc.org  Thunder Bay Indian Friendship Centre * www.tbifc.comwww.tbifc.com 80