1. Understanding the journey of assessing FASD in adolescents

2. Leah
13 year old female

3. 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

4. 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…

5. 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

6. 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

7. 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

8. 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)

9. 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

10. 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

11. 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

12. Prenatal alcohol exposure

13.   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

14. Neurodevelopment & Mental health

15. 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

16. 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

17. 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

18. 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

19. Physical assessment

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

21. 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

22. 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

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

24. Neurocognitive Understanding of FASD
Socialisation identified as area of strength
Source: Jodee Kulp

25. 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

26. 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

27. 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

28. If you want to learn more...
FASD HUB 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 NOFASD Australia is a non-profit charitable organisation and the peak organisation representing the interests of individuals and families living with FASD.

29. Telethon Kids Institute https://alcoholpregnancy. telethonkids. org
Telethon Kids Institute -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: pregnancy-and-breastfeeding/diagnosing-fasd/e-learning- modules/