Understanding the journey of assessing FASD in adolescents

Leah 13 year old female

Information from referral 13 year old Indigenous girl in OOHC Key concerns: Mental health issues Presented to ED with suicidal ideation Behavioural disturbance Cannabis use Disengagement from school Referred to CICADA for support with substance use Justice involvement FACS involvement Disengaged from MH services

At the beginning… MH concerns Behavioural disturbance Suicidal ideation Drug and Alcohol Self-harm Substance use problems (cannabis) Panic attacks Reactive Attachment Disorder Child Protection Issues Attention problems Conduct Disorder and oppositional behaviour In the early stages of getting to know Leah this is what we learnt…

The journey of engagement…. Substance use problems Daily cannabis – helped with sleep and anxiety Experimental methamphetamine – exacerbations in behaviour (including aggravated assault) Daily nicotine Avoided alcohol In OOHC Carer challenges Literacy Single-parent family Mental Health problems Complex Early Life Trauma Auditory hallucinations during cannabis intoxication; concerns around early psychosis Psychiatry review - Diagnosis of Mild Early Schizophrenia School Disengagement Learning and behaviour Due to challenges (which will be discussed next), it took two years to understand Leah – and how labels that she had been given before could be better understood e.g. school disengagement – more related to difficulties with learning and environment structured in a way that did not support Leah

Challenges on the journey… Appointments were often crisis oriented Presentation: appears as if she is understanding, easily terminate appointment – attention/focus – took a long time to build trust Challenge of appointments being crisis oriented –escalation of substance use, behaviour difficulties, carer fatigue/ difficulty managing, self harm

Parental Substance Use Suspected PAE High risk/suspected PAE - not confirmed yet - lots of co-morbidities  wanted to look further to assess - process of confirming maternal alcohol use With all this complexity – PAE – how does this help our journey

Vulnerable Groups Young people with: intellectual disability* parental substance abuse* complex trauma background* out of home care* juvenile justice involvement* co-morbid mental health* Ref: Lede MA et al. The consequences of chronic cannabis smoking in vulnerable adolescents. Paediatr Respir. Rev. (2016)

FASD Vulnerable Groups Young people with: intellectual disability* parental substance abuse* complex trauma background* out of home care* juvenile justice involvement* co-morbid mental health* Ref: Lede MA et al. The consequences of chronic cannabis smoking in vulnerable adolescents. Paediatr Respir. Rev. (2016) FASD

FASD assessment Key criteria Prenatal alcohol exposure Neurodevelopmental impairment Sentinel Facial features FASD assessment Key criteria History Confirmation of prenatal alcohol exposure Developmental history (prenatal/postnatal): other prenatal drugs or teratogens, trauma Neurodevelopmental & psychometric assessment Comprehensive testing in up to 10 domains Physical assessment & Investigations Morphological examination / facial features: diagnostic & non-diagnostic Growth including head circumference Genetic testing

Key criteria Confirmed exposure Severe impairment 3 or more domains Structural - e.g. microcephaly <3rd pc Functional - e.g. Cognition, Language <3rd pc Small palpebral fissure length (PFL) <3rd pc Smooth philtrum Rank 4 or 5 Thin upper lip Rank 4 or 5 Key criteria Severe impairment - functional Direct testing – e.g. psychometric testing Or Indirect testing – e.g. rating scales

Prenatal alcohol exposure

  History Multiple sources FACS Court reports Health records AUDIT-C Confirmed episodes of heavy alcohol use Birth mother had alcohol dependency and alcohol related injury and related offences Removed from care at 4 months of age due to maternal AOD use, domestic violence and neglect AUDIT-C = high risk Took time to confirm – Chasing FACS; consent etc. 16 A request Confirmed episodes of heavy alcohol use and other substance use, including heroin and nicotine during pregnancy Birth mother had alcohol dependency and alcohol related injury and related offences Removed from care at 4 months of age due to maternal AOD use, domestic violence and neglect

Neurodevelopment & Mental health

NEURODEVELOPMENTAL DOMAINS Brain structure /neurology Motor skills Cognition Language Academic Achievement NEURODEVELOPMENTAL DOMAINS Memory Attention Executive function, Impulse control Hyperactivity Affect Regulation Adaptive behaviour, Social skills, Social comm. Lange et al. (2017) Neurodevelopmental profile of Fetal Alcohol Spectrum Disorder: A systematic review

Brain structure /neurology Some abnormalities on EEG – intermittent slow wave changes in frontal lobe (non epileptiform actvity) Motor skills Not assessed Cognition FSIQ 0.3rd pc (WISC-V) Language Core Language 0.1st pc (CELF-5) Academic Achieve. Not directly assessed, however, documented history of difficulties Difficult to assess; engagement crisis driven prolonged assessment

Executive function, Impulse c./Hypera. Memory Not directly assessed Attention Pre-ex. ADHD Dx Executive function, Impulse c./Hypera. Working Memory 2nd pc (WISC) Affect Regulation Generalised Anxiety Disorder Dx Adaptive Behav. Composite score 3rd percentile (Vineland) Socialisation identified as area of strength

NEURODEVELOPMENTAL DOMAINS Brain structure /neurology Motor skills Cognition Language Academic Achievement NEURODEVELOPMENTAL DOMAINS Memory Attention Executive function, Impulse control Hyperactivity Affect Regulation Adaptive behaviour, Social skills, Social comm. 7 domains considered severely impaired

Physical assessment

Face, microcephaly, growth – biomarkers for PAE Sentinel Facial Features Microcephaly Growth impairment Sentinel facial features controlled by the brain Explain 3 SFFs

Face, microcephaly, growth – biomarkers for PAE Sentinel Facial Features Microcephaly Growth impairment Sentinel facial features controlled by the brain Explain 3 SFFs SPECIFICITY – > 95% all 3 features = 1st trimester PAE Typical in FASD Not specific in isolation Prevalent in FASD Esp. short stature Higher CNS risk

Physical Assessment Sentinel Facial Features   Sentinel Facial Features Palpebral fissure length: within normal range Lip thinness was Rank 4 (Caucasian Philtrum chart) and Rank 5 (African-American chart) (1 sentinel facial feature of FASD) Normal HC and growth parameters

FASD assessment Key criteria Confirmed Prenatal alcohol exposure Neurodevelopmental impairment in 7 domains 1 Sentinel Facial feature FASD assessment Key criteria

Neurocognitive Understanding of FASD Socialisation identified as area of strength Source: Jodee Kulp http://www.betterendings.org

Strengths Strong attachment with foster father Improving school attendance with support Juvenile Justice no longer involved Connected with friends Creative Enjoys engaging in Aboriginal culture Interested in hearing about culture Linked in with Aboriginal elder through local service Attending Aboriginal dance class Important to consider strengths as part of the assessment journey

Why diagnose? Benefits for Leah (the adolescent) Prevention Enhanced understanding of their strengths and needs Understanding ‘cause’ Reframe behaviour – “will not” vs. “cannot” Better targeted support and early intervention Parents can be connected with appropriate supports Assistance for NDIS funding and transition planning Prevention Supported living as an adult re Understanding cause beneficial (analogy - like genetic condition, Fragile X, or another form of acquired brain injury (e.g MVA) re-frame behaviour important - the 'can't do rather than won't do' understanding] Reframe behaviour according to developmental level – think brain, not behaviour

The journey in assessing FASD in adolescents Complex and something we have to think about and takes time; crisis driven but when pae is confirmed – important to keep in management plan and do ax and how this can be added to support

If you want to learn more... FASD HUB https://www.fasdhub.org.au This website provides information on FASD for health professionals, parents and carers, other professionals (including for justice, education, child protection and disability services), researchers and policy makers. NOFASD https://www.nofasd.org.au NOFASD Australia is a non-profit charitable organisation and the peak organisation representing the interests of individuals and families living with FASD.

Telethon Kids Institute https://alcoholpregnancy. telethonkids. org Telethon Kids Institute https://alcoholpregnancy.telethonkids.org.au/resources/health -professionals/ An Australian research institute focused on discovering causes, cures and treatments for the illnesses and diseases that target our kids and young people. The Telethon Kids Institute provides extensive information on the latest research in FASD and has developed a research subsite (see second link) specifically addressing Alcohol, Pregnancy, and FASD. E-Learning Modules: https://alcoholpregnancy.telethonkids.org.au/alcohol- pregnancy-and-breastfeeding/diagnosing-fasd/e-learning- modules/