Fetal Alcohol Spectrum Disorder FASD Basic Teaching Tool

Fetal Alcohol Spectrum Disorder (FASD) Basic Teaching Tool

This Power. Point is provided by NOFASD Australia to enable others with an interest in the topic to develop their own resource and increase community knowledge and awareness of FASD. NOFASD Australia takes no responsibility for the accuracy of amended presentations. 2

Teaching tool objectives • • • Provide a platform for individuals or groups to learn more about FASD. Provide the most up to date information about FASD. Provide a knowledge base of FASD information to enable others to develop their own material and raise community awareness of FASD. 3

Teaching tool learning goals • • • What is FASD Impact of FASD Populations at risk Diagnosis Challenges 4

What is FASD? • • Fetal Alcohol Spectrum Disorder (FASD) is the term used to describe the lifelong physical and/or neurodevelopmental disorders that can result from fetal alcohol exposure. FASD is primarily an acquired brain injury that is a symptom of parents either not being aware of the dangers of alcohol use when pregnant or planning a pregnancy, or not being supported to stay healthy and strong during pregnancy. 5

What causes FASD? • • • Alcohol is a neurotoxin (poison) and a teratogen. A teratogen is an agent that is known to cause birth defects and permanent brain injury to a fetus. Alcohol is a substance that can cause harm to the developing baby at any time during the pregnancy. 6 (Bower & Elliott, 2016)

Effects of alcohol on the fetus • • • Alcohol freely crosses the placenta and creates a blood alcohol level in the fetus the same or higher than that of the mother. The fetus has a small unformed liver. It takes longer to metabolise the alcohol so it remains in the baby longer. The fetus does not have the enzymes required to clear alcohol from the system, causing oxidative stress which can damage DNA. 7 (Bower & Elliott, 2016; Roozen, Kok & Curfs, 2017)

Impact of FASD • • FASD is a serious public health issue. There are more children born each year with FASD than with Autism Spectrum Disorder, Spina Bifida, Cerebral Palsy, Down Syndrome and SIDS combined. (Mather, Wiles, & O'Brien, 2015) 8

Impact of FASD is a complex learning disorder affecting multiple domains of functioning including: • • • Working memory Attention Impulsivity Learning Social skills • Language development 2008) 9 (O’Malley,

Impact of FASD • The most common impact is on the brain’s executive functions – the ability to plan, learn from experience and control impulses. • Most people living with FASD do not learn from punishment because they cannot generalise rules. In addition, many have impulse control problems. (Green et al. , 2009) 10

Life and health outcomes • • • Life expectancy for people with FASD is 34 years. 19% of deaths caused by mental health issues and suicide. 92% of individuals living with FASD will have a co-occurring mental health issue. The most common are depression and suicidal ideation. Young people with FASD are 19 times more likely to be incarcerated than those without FASD will most commonly be misdiagnosed with ASD, ADHD and CD, leading to 11

Who is at risk? • • Individuals from all cultures and socio-economic backgrounds are at risk from prenatal alcohol exposure. Wherever there is alcohol, there is the potential for FASD. (Bower & Elliott, 2016) 12

Australian women and alcohol • 50% of Australian women experience an unplanned pregnancy. 2016) • 59% of Australian women drink at some time during their pregnancy. 2007) • (Australian Medical Association, (Colvin et al. , Estimates indicate that 1 in every 13 women who consume alcohol during pregnancy will have a child with FASD. 2017) (Lange et al. , 13

Partners and alcohol Research has shown that 38% of Australian women would be less likely to drink alcohol if their partner or spouse encouraged them to cut back or stop drinking during their pregnancy, and 30% would cease drinking if their partner stopped drinking completely. 14 (Peadon, Payne, Henley et al. , 2011)

Partners and alcohol Recent research also points to a link between alcohol and poor sperm development, meaning the onus is on expectant fathers too. A myriad of studies show that alcohol consumption by biological fathers is significantly linked to health problems in their children. 15 (Lucia & Moritz, 2017)

The WHO & NHMRC recommends • No alcohol at all when planning, possibly • pregnant, throughout pregnancy and when breastfeeding. There is no safe time to drink alcohol during pregnancy and there is no safe amount. 16

Maternal alcohol use • • FASD is not the result of an uncaring act. No one intentionally harms their child; no one causes FASD on purpose. There is no blame. FASD can be the by-product of trauma, addictions, and/or a lack of information. 17 (Rutman, 2013)

FASD is an umbrella term 18

Two types of FASD diagnosis FASD + 3 Sentinel Facial Features FASD < 3 Sentinel Facial Features Prenatal Alcohol Exposure Confirmed or Unconfirmed Prenatal Alcohol Exposure Confirmed Impairment in at least 3 neurodevelopmental domains 3 Facial Features 0, 1 or 2 Facial Features 19 (Bower & Elliott, 2016)

Two types of FASD diagnosis Both medical diagnoses in Australia include severe impairment in at least 3 of the following developmental domains: Brain structure/Neurology Memory Motor Skills Cognition Attention Executive functions, impulse control, hyperactivity Language Academic Achievement Affect Regulation Adaptive behaviour, social skills, social communication (Bower & Elliott, 2016) 20

FASD facial features 83% of individuals living with FASD do not display sentinel facial features. (Aros. , et al, 2012) 21

The ‘spectrum’ of birth Is due to: defects • • • The quantity of alcohol consumed How frequently it was consumed Timing of consumption during the pregnancy Other influencing factors can include maternal age, nutritional deficiencies and ability to metabolise alcohol, socio -economic background and comorbidity of other physical and mental illnesses. 22

Mis-diagnosis or co-diagnosis In addition, people with FASD may also be mis-diagnosed, underdiagnosed or present with codiagnosis with the following disorders: • Autism Spectrum Disorder • ADHD • Reactive Attachment Disorder • Conduct Disorder • Oppositional Defiant Disorder (Stevens, Nash, Koren, & Rovet, 23

Benefits of diagnosis • • • The correct diagnosis provides a lens through which we can gain an understanding of the whole story and formulate targeted treatment plans. Recognition of FASD provides an alert for the possibility of other underlying medical conditions. Recognition of the depth of the problem is imperative for future prevention. 24

Benefits of diagnosis • • Having a diagnosis means we can work with the individual in a way that meets their needs. Increases an individual’s access to FASD specific clinicians and services. There is less chance of incorrect medication being prescribed. Increased knowledge means a stronger ability to advocate. 25

FASD Diagnostic Instrument • • The Australian FASD Diagnostic Instrument was 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-todiagnosis-of-fasd. pdf 26

FASD 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. 27

FASD indicators • • • May have a diagnosis of Attention Deficit Hyperactivity Disorder (ADHD), Oppositional Defiance Disorder (ODD), Reactive Attachment Disorder (RAD), a Mental Health diagnosis, other dependency e. g. problem gambling. Inconsistent attendance, and a history of being turned away from other programmes. May give inconsistent versions of events (confabulation). 28

Challenges of living with FASD • • May be functioning at an age much lower than their chronological age. May experience difficulty following instructions. May become easily confused and distracted. May be impulsive. May be easily irritated, leading to temper tantrums. May repeat mistakes on many occasions. May not recognise danger, leading to unsafe actions. May have trouble distinguishing reality from fantasy. 29

Difficulties with social skills Children and adults with FASD typically lack social skills, such as: • Listening • Asking for help • Waiting their turn • Sharing People with FASD can be naïve and gullible, and can be easily led by peers. They need constant supervision to develop patterns of appropriate behaviour. 30

Difficulties with social skills • • • Making and keeping friends is a huge challenge, which often leads to social exclusion. Often less developmentally mature than peers. Don’t understand subtleties of different kinds of relationships. Poor understanding of social etiquette or personal space, for example standing too close. These challenges are the result of learning difficulties. 31

Physical vs Developmental age • • A classic sign of FASD – individuals appear to be acting 6, 8, 16, and 20 all at the same time. An individual who is 18 may have the language skills of a 20 year old but the social skills of a 7 year old. 32

Secondary conditions Children and adults living with FASD often experience additional difficulties including: • • Alcohol and/or drug misuse Mental health challenges Trouble at school, including suspensions Incomplete education Fatigue and anxiety Crime Inappropriate sexual behaviour 33

Secondary conditions Children and adults living with FASD often experience additional difficulties including: • • Poverty and homelessness Anger and aggression Withdrawing and avoidance Early unplanned pregnancy Poor self-esteem Isolation Depression and suicidal tendencies 34

Strengths • With appropriate support from parents and carers the learning and quality of life outcomes for individuals with FASD can be vastly improved. • Individuals living with FASD also have strengths. • Many have exceptional skills and abilities in one or more areas, which often masks the severity of symptoms in other areas. 35

Strengths Individuals with FASD can be: • • • Creative Athletic Caring Determined Friendly Artistic Generous Helpful Willing 36

For further information about any aspect of FASD: • • • Visit the National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD) website: www. nofasd. org. au Email admin@nofasd. org. au Call 1300 306 238 37

Glossary • • • FASD – Fetal Alcohol Spectrum Disorder FAS – Fetal Alcohol Syndrome p. FAS – Partial Fetal Alcohol Syndrome ND/AE – Neurobehavioral Disorder/Alcohol Exposed ARND - Alcohol-Related Neurodevelopmental Disorder ND-PAE – Neurodevelopmental Disorder - Prenatal Alcohol Exposure SE/AE - Static Encephalopathy/Alcohol Exposed ASD – Autism Spectrum Disorders ADHD – Attention-Deficit Hyperactivity Disorder CD – Conduct Disorder ODD – Oppositional Defiant Disorder RAD - Reactive Attachment Disorder 38

References Aros, S. , Kuehn, D. , Cassorla, F. , Avaria, M. , Unanuie, N. , Hendriquez, C. , … Kleinsteuber, K. (2012). A prospective cohort study of the prevalence of growth, facial, and central nervous system abnormalities in children with heavy prenatal alcohol exposure. Alcoholism: Clinical and Experimental Research, 36(10), 1811 -1819. doi: 10. 1111/j. 1530 -0277. 2012. 01794. x Bower, C. , Elliott, E. J. (2016). Australian Guide to the diagnosis of Fetal Alcohol Spectrum Disorder (FASD). Australia: Department of Health. Retrieved from http: //alcoholpregnancy. telethonkids. org. au/australian-fasddiagnostic-instrument/australian-guide-to-the-diagnosis-of-fasd Colvin, L. , Payne, J. , Parsons, D. , Kurinczuk, J. J. , & Bower, C. (2007). Alcohol consumption during pregnancy in non-indigenous West Australian women. Alcoholism - Clinical and Experimental Research, 31, 276 -284. Green, C. , Mihic, A. , Nikkel, S. , Stade, B. , Rasmussen, C. , Munoz, D. , & Reynolds, J. (2009). Executive function deficits in children with fetal alcohol spectrum disorders (FASD) measured using the cambridge neuropsychological test automated battery 39

References Lange, S. , Probst, C. , Gerrit, G. , Jurgen, J. , Larry, L. , & Popova, S. (2017). Global prevalence of fetal alcohol spectrum disorders among children and youth: A systematic review and meta-analysis. JAMA Paediatrics, 171(10). doi: 10. 1001/jamapediatrics. 2017. 1919 Lucia, D. , & Moritz, K. (2017, November 6). It’s not just mums who need to avoid alcohol when trying for a baby. The Conversation, Retrieved from https: //theconversation. com/ca Marie Stopes International Australia (2008). Real choices: Women, contraception and unplanned pregnancy. Melbourne, Australia: Author. Retrieved from http: //www. mariestopes. org. au/research/australia-realchoices-key-findings Mather, M. , Wiles, K. , & O'Brien, O. (2015). Should women abstain from alcohol throughout pregnancy. BMJ, 351. doi: https: //doi. org/10. 1136/bmj. h 5232 May, P. , & Gossage, J. (2011). Maternal risk factors for fetal alcohol spectrum disorders: Not as simple as it seems. Alcohol Research and Health, 34(11), 15 -26. 40

References O'Malley, K. (2008). ADHD and fetal alcohol spectrum disorders (FASD). Nova Science Publishers. Peadon, E. , Payne, J. , Henley, N. , D'Antoine, H. , Bartu, A. , O'Leary, C. , Bower, C. , & Elliott, E. (2011). Attitudes and behaviour predict women's intention to drink alcohol during pregnancy: The challenge for health professionals. BMC Public Health, 10, 510 -517. doi: 10. 1186/1471 -2458 -11 -584 Thanh, N. , & Jonsson, E. (2016). Life expectancy of people with fetal alcohol syndrome. Journal of Population Therapeutics and Clinical Pharmacology, 23(1), 53 -59. Roozen, S. , Kok, G. , & Curfs, L. (2017). Fetal Alcohol Spectrum Disorders: Knowledge Synthesis. Maastricht: Datawyse Maastricht University Press. Rutman, D. (2013). Voices of women living with FASD: Perspectives on promising approaches in substance use treatment, programs and care. First peoples child and family review, 8(1), 107 -121. Stevens, S. , Nash, K. , Koren, G. , & Rovet, J. (2013). Autism characteristics in children with fetal alcohol spectrum 41