FASD, a hidden developmental disorder by Adoption UK, Scottish Government

1. FASD
A Hidden Developmental Disorder
FASD WORKSHOP
SIRCC Conference June 2018

2. Terminology
• FAS ( Fetal Alcohol Syndrome)
• FASD ( Fetal Alcohol Spectrum Disorder)
• FASD with or without sentinel facial features
(Canadian terminology)
• Neuro-Developmental Disorder due to Pre-
Natal Exposure to Alcohol (NDPAE)

3. • Is FASD a significant issue?
• How is the development of children affected
prenatally by alcohol?
• What progress is being made in identifying
affected individuals?
• Will earlier identification help?

4. Jones K.L and Smith D.W.
Lancet 1973. 2.999-1001
- Introduction of the
clinical term,
“Fetal Alcohol
Syndrome”

5. Is this a more relevant image?

7. “Babies and Alcohol don’t Mix!!”
Chris Steer ; Neil McIintosh ; Debbie Miller.
SCOTTISH PAEDIATRIC SURVEILLANCE UNIT
FETALALCOHOL SYNDROME Survey Review
May 29th 2013

8. Roozen* et al Reported World Wide Epidemiological Study Findings (noting “marked
heterogeneity of study populations”) :-
•Passive Surveillance Studies overall FAS prevalence 0.54/1000 (0-4.8)
•Active Surveillance Studies overall FAS prevalence 3.24/1000 (0-14.97)
FAS * FASD *
Global prev.(10
Countries
2.9 22.8
Australia 1.3 1.1
Canada 37.2 30.5
Italy 8.2 47.1
N.Zealand 0.11 -
S.Africa 55.4 113.2
USA 0.67 33.5
* rate per 1000 live births ; other countries included Brazil,
Croatia, Israel and Sweden.
*Roozen S et al. 2016 Alcohol Clin Exp Res 40(1) 18-32

9. Svetlana Popova, PhD, Institute for Mental Health Policy Research, Centre for
Addiction and Mental Health Toronto Canada (lana.popova@camh.ca).
CONCLUSIONS AND RELEVANCE
Globally, FASD is a prevalent alcohol-related
developmental disability that is largely preventable.
The findings highlight the need to establish a universal
public health message about the potential harm of
prenatal alcohol exposure and a routine screening
protocol.
Brief interventions should be provided, where
appropriate.
• JAMA Pediatr. doi:10.1001/jamapediatrics.2017.1919

10. Scottish Paediatric Fetal Alcohol Syndrome Surveillance Study
Data January 2010-December 2014
• 28/41 cases diagnosed under 12 months of age
• 24 mothers aged 30yrs or older
• Mean gestation at delivery 36.4 weeks
• High rates of associated drug abuse and cigarette exposure
• 9 mothers with psychiatric disorders
• 13/41 with biological parent(s)
• 7/41 with grandparents
• Fostered/Adopted 18/41
• Siblings with known FAS 4
• 41 definite cases (IOM 2005 Criteria) in 60 months in under 6 yrs age group. Prevalence
0.19 /1000 live births
Chris Steer ; Neil McIntosh ; Debbie Miller.
SCOTTISH PAEDIATRIC SURVEILLANCE UNIT
FETALALCOHOL SYNDROME Survey Review December 2014

11. [ * - comments included “too early to assess, will be evaluated later, awaiting assessment,
delayed social smile, limited attention”]
[ ** - comments included “ too young to assess, short concentration span, concentration
difficulties, quite hyperactive, irritable at times (previous NAS), ADHD diagnosed and treated,
short concentration span, behavioural problems”]
[ *** - comments included “too young to assess, temper tantrums, attachment – overfamiliar
with strangers but physical neglect, fearful of sudden noises, severe emotional and behavioural
difficulties” ]

12. “Changing Scotland’s Relationship with
Alcohol: A framework for action”, -
( a “whole population approach”)
1.reduced consumption.
2.supporting families and communities.
3.positive public attitudes and choices.
4.improved treatment and support.
-“No Alcohol No Risk” CMO messaging 2016
-Minimum Unit Price for Alcohol
2018
Scotland and FASD ?
Initiatives promoting Change

13. (Continued) Scottish Government (SG) Support for:-
•Alcohol Brief Interventions in Primary care, A/E. Maternity
Services, - ongoing, combined with Specialist Midwifery support
•NES Learn-Pro FAS e-learning Modules 2012
( www.knowledge.scot.nhs.uk/home/learning-and-cpd/
learning-spaces/fasd.aspx )
•Fetal Alcohol Spectrum Disorder Awareness Toolkit 2013
(www.gov.scot.Publications/2013/10/3881)

14. •Scottish Government Fetal Alcohol Spectrum
Disorder Awareness Toolkit 2013
www.gov.scot.Publications/2013/10/3881)

15. ( www.knowledge.scot.nhs.uk/home/learning-and-cpd/learning-spaces/fasd.aspx )
*NES Learn-Pro FAS e-learning Modules 2012

16. •Maternity and Childrens FASD Advisory Group within Children and Families Directorate
of SG
-Liaison with important stakeholders e.g. Educational Psychology, Preconceptual
(Nutrition) Care Group, Legal Services, Education, Social services, Voluntary Groups and
support for research and educational initiatives to raise FASD awareness and improve
clinical skills and confidence
•SG support for Scottish Health Action on Alcohol Problems (SHAAP), - intercollegiate
evidence based advocacy and lobbying group Drs Peter Rice and Eric Carlin (e.g. for
minimum unit price machinations!)
•SG support for Alcohol Biomarker (Meconium Alcohol Ester ) Study ( Published 2016 –
Abernethy C et al Arch Dis Child.
- http://dx.doi.org/10.1136/archdischild-2016-311686 )
Continued:-

17. Continued
• SG support for the Ayrshire and Arran Multidisciplinary FASD
Diagnostic Study (2016 et seq. Drs Sarah Brown, Jennifer Shields,
Lorna Fulton and team)
• SG support for the University of Manitoba outreach educational
initiative,commenced 2013 and annual review visits since
– Professor Anna Hanlon Dearman and FASD multidisciplinary group.
(FASD seminars and interactive education sessions)
• SG support for the Scottish National FASD Clinicians Forum,
- 2015 et seq. – twice Yearly meetings, - lectures, presentations,
case reports and peer interaction.
• SG support to establish Scottish National FASD Care Pathway
Dr Patricia Jackson and colleagues
( http://www.knowledge.scot.nhs.uk/scormplayer.aspx?ppkg
url=/ecomscormplayer/fasdpathway/ )
Continued

19. Short Term Aims
• To ensure routine recording of alcohol intake using recognised questionnaires pre-
birth and all possible post birth contacts e.g.; 6 week and 27-30 (months).
• All relevant persons will be aware of the processes and procedures to follow.
• Any infant or child showing developmental problems where there is a history of
maternal alcohol intake in pregnancy will have access to assessment and diagnosis
using a multi-disciplinary team approach.
• Families will be offered appropriate advice, information and help to promote and
support their child’s wellbeing.
• All Paediatric Protocols used to screen children with possible neuro-developmental
delay will include diagnostic tests and parental questionnaires to actively look at
the possibility of alcohol exposure in utero as an underlying cause.
• Child planning meeting will include a professional who is experienced and trained
in FASD diagnosis

20. Why wasn’t this happening already?
• Poor recording of alcohol histories
• Unreliable and varied approaches to history taking
• Wariness to ask routinely about alcohol intake
• Reluctance on part of paediatricians to consider FASD as a
diagnosis
• Lack of confidence in ability to make the diagnosis
• Concern that patient/ parent relationship would be
compromised
• Lack of belief that it made any difference for the child

21. FASD Care Pathway Development
• Wide experience reference group involving Health, Education,
Social Care ,Third Sector colleagues and parents and carers
exchanged information and views over an 18 month period.
• Smaller core group met to develop the Pathway of Care
• The Pathway utilises GIRFEC ( Getting It Right For Every Child)
methodology to ensure comprehensive review and support of
the children affected

22. The Fetal Alcohol Spectrum Disorder Diagnostic Pathway
Scotland 2017
A range of problems known as
Fetal Alcohol Spectrum Disorder (FASD )
can affect the baby if the mother drinks alcohol during pregnancy even before she
knows she is pregnant.
Identifying and supporting mothers and their children at the earliest opportunity is
important. The FASD Pathway has been launched to help clinicians make a
diagnosis as early as possible to provide support, and advise parents and carers
how to seek help for their child.
FASD Care Pathway
http://www.knowledge.scot.nhs.uk/scormplayer.aspx?pkgurl=/ecomscormplayer/fasd
pathway/
Webinar Introduction and Launch
https://meetings.webex.com/collabs/url/iX0O7N9-NB17n-
HhUp0ox9gT5bNMONShQ5rV9JBDy3C00000

23. Possible Symptoms in the Pre-school years
• Infancy 'difficultness':
• Hard to settle
• Poor sleep pattern
• Feeding problems
• Premature/small birth weights
• Born <36 weeks
• Baby under 10th centile for head
circumference and weight
• Congenital heart disease
• Irritable; failure to habituate
• Failure to thrive
• 0-2 years:
• Excessive arousal, short attention
• Atypical sensory responsitivity
• Sleep problems
• ADD with or without
hyperactivity
• Language delay
• Developmental delay - fine motor
skill impairment
• Impulsivity
• Distractible
• Poor memory
• Incorrigible
• Challenging behaviours

24. • Preschool 3-5 years:
• All of above plus:
• Language delay
• Delayed auditory processing
• Unable to sit still or pay attention
• Multiple sensory overload
• Difficulties in forming friendships
• Doesn't learn from mistakes
• Can't do complex problem solving
(maths)
• Information processing deficits
• Can't sort - numbers, sequencing
• Verbal learning poor
• School age:
• Identified as requiring additional support
• Lack of progress across Literacy Numeracy
and health and wellbeing
• Attention deficit, impulsivity, hyperactivity
• Memory problems
• Poor social/peer group interactions
• Aggressiveness
• Unable to sit still or pay attention
• Multiple sensory overload
• Doesn't have friends
• Doesn't learn from mistakes
• Can't do complex problem solving (maths)
• Information processing deficits
• Can't sort - numbers, sequencing
• Verbal learning poor
• Sensory processing difficulties
• May have recorded learning disability
• Can't read social cues
• Repeats instructions but doesn't follow
them
• At risk from offending behaviour, known
to the police School failure
• Exclusion from school on multiple
occasions
• Sexually inappropriate

25. Sleep
Dysregulation
In FASD.
DAYTIME SEQUELAE
DISRUPTED
MLT
SECRETION/
DLMO PROBLEM
INCREASED
SENSORY
SENSITIVITY
POOR
SLEEP
HYGIENE/ENVIRO
NMENT ETC.
ADHD/ASD
RELATED
DISRUPTED
SUPRACHIASMATIC
PACEMAKER
STRESS
ANXIETY,
ENVIRONMENTAL
ADVERSITY MOOD
DISORDERS
FASD RELATED
Global Brain
damage with loss
of neurones and
connectivity
DIET,MEDICATIONS,
OTHER HEALTH
ISSUES
PRIMARY SLEEP
DISORDERS
E.G. OSAHS,
PLMD
SUMMATION/THESIS-

26. Co- morbidities with FASD

27. Streissguth et al 2004. N= 415 ( J. Dev Behav. Ped. 25(4) 228-38

28. How does this involve colleagues working in the
Care Sector ?
• Addiction services for women of child bearing age
• Women in abusive situations
• Women with mental health problems using alcohol as a
support
• Irritable poorly setting infants
• Children with neurobehavioural problems particularly
attention difficulties, oppositional and aggressive impulsive
behaviours, autistic features.
• Secondary presentations of mental health problems in
young people associated with school failure, sleep
fragmentation, depression, suicide, addiction
• Encouraging vulnerable young women to use contraception
if they can’t be persuaded not to drink excessively.
• Anti social behaviour and prison terms

29. Diagnostic Process
REFERRAL
Child with
developmental
delay and history
of maternal
alcohol ingestion
referred in for
assessment
PRE-CLINIC
Information gathering to
confirm/refute alcohol
history.
Possibly gathering of pre-
clinic assessment
information from AHP
and Psychology
colleagues,and other
agencies
(Depends on Clinic
Model)
*Preparation discussion
with mother and child
(if age appropriate) about
possible diagnosis.
DIAGNOSTIC CLINIC
Examination of child
Review of assessments
and information.
Scoring of domains using
the 4-Digit Code System.
Team Discussion
DIAGNOSIS
Formulation of Support
Plan

30. So Let’s get the
Message out there
Think before you
drink
But if you did, get the
right help for your
child.

33. Team training,
April 2017:
Campaign Master,
Salesforce &
Eventbrite
Adoption UK in Scotland
Aliy Brown
parent of a child with FASD – helpline
advisor and office coordinator
Alison Parkinson
helpline advisor and education coordinator

34. FASD and our children

35. FASD and our children
• Back story
• What did we notice and why we thought
it was different to trauma/attachment
• What effects this has on day to day life
• How this can be missed by others
• Why diagnosis matters
• Accepting and reframing

36. 9 Brain Domains
Executive
functioning
Sensory
& motor
Academic
skills
Brain
structure
Living &
social skills
Focus &
attention
Cognition
Communication
Memory

37. Developmental differentials
in FASD
1820
8
6
16
11
7
Emotional
maturity &
comprehension
Money & time
ability
Verbal ability
Actual physical
age
Reading age
Living skills
Social skills
Image reproduced from information in Maria Catterick’s book: Understanding Fetal Alcohol
Spectrum Disorder, JKP (2014), data presented by Malbin 2008

38. What do we do?
• Established in 1971
• A voluntary organisation providing
information, support, training and advice
• Set up by adopters – for adopters
• UK-wide with offices in England, Northern
Ireland, Scotland and Wales

39. What do we do?
• Telephone helpline - local and central
• Peer support services – volunteer led
support groups, buddy scheme, parent
consultant
• Family events – picnics, parties, Wiston
Lodge
• Website- online community, monitored
forums, articles and information

40. Contact
Adoption UK in Scotland
• Dedicated Scotland Helpline : 0131 201 2489
(open Monday – Friday, 10am to 2.30pm)
• Email: scotland@adoptionuk.org.uk
• Facebook: @AdoptionUKScotland
https://www.facebook.com/AdoptionUKScotland/
• Twitter: @AUKScot https://twitter.com/AUKScot
• Website: http://www.adoptionuk.org/scotland
• Edinburgh Office: 0131 201 2488

41. Thank you!