Fetal Alcohol Spectrum Disorders The Case for Triple Diagnosis SANDAS Symposium Wednesday September 28 th 2016 Sue Miers AM Founder NOFASD Australia
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Parents/Carers struggle to find effective counselling options for adolescents/adults with FASD or suspected FASD who have substance dependency and/or mental health issues 3
Irish Psychiatrist Kieran D. O'Malley in ADHD and Fetal Alcohol Spectrum Disorders (FASD) “Co - morbidity is the rule rather than the exception in patients with FASD. It often begins in infancy, continues through the lifespan, and may change over time due to environmental stressors” 4
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Primary characteristics • Impaired Judgement • Lack of understanding cause and effect • Inability to learn from mistakes • Mood swings (confused, distorted thinking, anger management issues, anxious) • Attention problems • Impulsivity, lack of self control 6
Primary characteristics • Confabulation without deception • Stealing without deception • Inner locus of control faulty or missing • Unable to take responsibility for actions – often blame others 7
Understanding the impact of FASD FASD is a complex learning disorder affecting multiple domains of functioning including working memory, attention, impulsivity, learning, interpersonal relatedness, social skills and language development. O’Malley 2008 8
There is a huge lag between chronological and developmental age irrespective of their IQ 9
FASD can be masked by co- occurring disorders Adhd, autism, schizophrenia, depression, bi- polar disorder, substance use disorders, sensory integration disorders & reactive attachment disorder, separation anxiety, PTSD, traumatic brain injury, risk for borderline personality disorder. Also medical disorders - siezures, heart abnormalities, cleft lip & palate. 10
Secondary issues • Not completing school/training programs • Drug & Alcohol Dependency & Mental Health issues are the rule rather than the exception • Problems acquiring and maintaining housing • Employability/financial issues 11
Secondary issues • Relationship problems/family & domestic violence • Health problems, reproductive issues • Problems with social compliance and the law – incarceration a common outcome 12
Why we need to recognise FASD • The correct diagnosis provides a lens through which we can gain an understanding of the whole story & formulate targeted treatment plans • Recognition of the depth of the problem is imperative for future prevention • Recognition of FASD provides alert for the possibility of other underlying medical conditions 13
Aus FASD Diagnostic Instrument • Published in May 2016 • A copy is available on the Australian Paediatric Surveillance Unit website http://www.apsu.org.au/assets/Uploads/2 0160505-rep-australian-guide-to-diagnosis- of-fasd.pdf 14
Aus FASD Diagnostic Instrument On-line learning Modules for Clinicians http://alcoholpregnancy.telethonkids.org.a u/australian-fasd-diagnostic-instrument/ 15
FASD in AOD & Mental Health • Practice based evidence tells us it is important to modify approaches for those who we suspect have FASD. • Difficulties often present as behavioural challenges & understanding is essential in telling us how to intervene. • There may also be contraindications for pharmaceutical interventions ( O’Malley 2008) 16
FASD Diagnosis in adults • Current diagnostic capacity is limited • In an ideal world screening would lead to an assessment and diagnostic evaluation • Current lack of diagnosis and appropriate treatment and support is resulting in extremely devastating outcomes including incarceration and death. • A life history screen can be very helpful 17
Life history Screen for FASD • Published in the International Journal of Alcohol & Drug Research (2013) • Aside from demographics there are 28 questions in 9 categories - expected that these questions will be asked over several sessions • The screen is meant to be a guide for modifications in treatment approach • The screen needs to be validated for sensitivity and specificity 18
Why not just treat presenting behaviours? Visual reminders 19
FASD – “red flag” indicators • Friendly, likeable, “talk the talk” & seem to want to please, but often don’t follow through • Appear very bright but exhibit immature behaviour when stressed or under pressure • Good expressive language but history of poor school performance, not living with family of origin, unstable accommodation/homelessness, relationship problems, financial issues, contact with the legal system 20
FASD – “red flag” indicators • May have a diagnosis of ADHD, ADD, ODD, RAD, a MH diagnosis, other dependency eg problem gambling • Inconsistent attendance, and a history of being turned away from other programmes • May give inconsistent versions of events (confabulation) 21
What can Service Providers do? Paradigm Shift – If FASD need to understand • They have a brain injury • Unable (not unwilling) to always take responsibility for their actions • Unable to learn from experiencing consequences • Not able to always control their behaviour and they are not making informed choices 22
What can Service Providers do? Paradigm Shift – If FASD: • Independence may not be possible without intensive support • Helping to make & keep appointments or taking to appointments is not enabling dependency it is providing the accommodations needed to achieve success 23 • .
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What can Service Providers do? • Upskill all staff so that FASD is included in their assessment and skills repertoire • Value parent/carer experience • Develop understanding of the impact of FASD across the lifespan • Recognise importance of key agency taking responsibility for case management 25
Strategies for Success • Modified counselling sessions – longer process more frequent appointments, watch for sensory overload • Concrete language – directive, limit need for receptive language skills, use visuals • Consistency – appointment days and times, phone reminders, limit & prepare for staff changes 26
Strategies for Success • Reality based therapy - Role play and social stories • Review and repetition important • A positive “try again” attitude – remember that ‘falls” do not necessarily signify lack of desire to change 27
Strategies for Success • External system of support to enable them to manage challenging situations and daily living skills. These issues may include parenting, employment, housing, educational training and social behaviour • Adapt the environment instead of trying to change the person. Addressing daily living needs (as well as removing access to substances) is far more beneficial than insight work for these persons 28 •
Strategies for Success • Primary treatment goals should include realistic living arrangements, sheltered work environments & life skills enhancement • Relapse prevention - focus on increased supervision & community supports • Ongoing lifetime supports usually necessary - ongoing “booster” counselling sessions 29
Practice based evidence tells us: • Group therapy & dredging up past may cause enormous trauma & be overwhelming • Insight Therapy is very difficult for them to comprehend – too cognitive • Cognitive behavioural therapy ineffective unless modified for clients social/emotional/developmental age • “Rewards , incentives, punitive consequences” ineffective unless absolutely immediate 30
Final thoughts to keep in mind • FASD crosses every system of care - developing true collaborative cross agency & systems relationships is essential • Correctly recognizing & addressing FASD can reduce long term costs & improve outcomes for the individual, family, agency, & systems • By successfully intervening with substance using women who have FASD themselves or a child with FASD we can reduce the incidence of further alcohol exposed pregnancies 31
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