The document discusses the need for revised guidelines regarding fetal alcohol spectrum disorders (FASD), highlighting the stigmatizing language and diagnostic challenges related to prenatal alcohol exposure. It critiques existing criteria and emphasizes the necessity of considering genetic factors, while arguing for a change in terminology to 'alcohol related developmental disabilities' (ARDD) to better reflect the complexities of the condition. By proposing this new nomenclature, the document seeks to reduce stigma and promote a more comprehensive understanding of the effects of alcohol on both present and future generations.

1. Submitted to –
National Institute for Health and Care Excellence Fetal
alcohol spectrum disorder
Consultation on draft quality standard – deadline for comments 5pm on 03/04/20
SCOTLAND: A national clinical guideline. January 2019
1. INTRODUCTION
1.1 The need for guidance
“Alcohol consumption in pregnancy has the potential to cause
significant fetal damage.”
Comment- The word “damage” is found to be stigmatizing by
birth mothers. In addition, the phrase itself does not accurately
convey the mechanism by which alcohol exposure impacts the
developing fetus.
1.3.1. Existing diagnostic criteria
- “A committee of experts, mandated by US federal law, was
convened by the Centers for Disease Control and Prevention
(CDC) to update and refine the diagnostic criteria for FAS in
2004.27 Only criteria for FAS were developed because there
was deemed to be lack of evidence to support the development
of reliable diagnostic criteria for the rest of the spectrum. The
committee then introduced the term FASD as an umbrella term

2. to encompass the full range of individuals along a broad
continuum of clinical deficits related to PAE.”
COMMENT– should be ‘adopted’ not “introduced.”
The term Fetal Alcohol Spectrum Disorders was first used by
Professor Randi Hagerman and Dr Kieran O’Malley
Ref.- Chapter of -Pharmacological treatment of alcohol-affected
children and adolescents. Published by [USA] NIAAA.
September 1998.
- “A further diagnosis of ‘neurodevelopmental syndrome due to
prenatal alcohol exposure’, reserved for patients in whom no
other neurodevelopmental disorder can be diagnosed, is
anticipated with the implementation of the 11th revision in
2022”
COMMENT– the infallibility of DSM diagnoses! The
consequences of prenatal alcohol exposure should not be a
diagnosis of exclusion. It implies that all mothers, who are
carrying a fetus with such a genetic condition, do not drink
alcohol during pregnancy. The correct designation should be e.g
Downs Syndrome with FASD, or Downs Syndrome with prenatal
alcohol exposure, thereby providing the imperative of research
into distinguishing neurodevelopmental differences between the
two.
2. Identification of children at risk for FASD.
2.1. Maternal alcohol history.
“The Chief Medical Officers’ guideline is that:

3. - If you are pregnant or think you could become pregnant, the
safest approach is not to drink alcohol at all, to keep risks to
your baby to a minimum, drinking in pregnancy can lead to
long-term harm to the baby, with the more you drink the greater
the risk.
- The risk of harm to the baby is likely to be low if you have
drunk only small amounts of alcohol before you knew you were
pregnant or during pregnancy.
- If you find out you are pregnant after you have drunk alcohol
during early pregnancy, you should avoid further drinking.
- You should be aware that it is unlikely in most cases that your
baby has been affected. If you are worried about alcohol use
during pregnancy do talk to your doctor or midwife.”
COMMENT- the last ~ is not compatible with the other three.
The same contradiction is in the Canadian 2015 Guidelines.
2. Identification of children at risk for FASD.
2.1.1. Assessing likely prenatal alcohol exposure.
Rational for revision-“We have therefore moved the reference to
facial features to the supporting text and added a statement to
the recommendation in section 3.1.1 that genetic causes should
be considered (and excluded, where possible) before arriving at
a diagnosis/descriptor of FASD.”
COMMENT– This raises the issue that FASD is a diagnosis of
exclusion i.e. if the child has a recognized other genetic
condition then it cannot be FASD. This is a fallacy. It implies
that all mothers, who are carrying a fetus with such a genetic
condition, do not drink alcohol during pregnancy. The correct

4. designation should be e.g Downs Syndrome with FASD, or
Downs Syndrome with prenatal alcohol exposure, thereby
providing the imperative of research into distinguishing
neurodevelopmental differences between the two.
2.1.2. Recording the pattern of alcohol consumption.
“This information should be routinely recorded by the midwife
in antenatal notes and communicated to the GP and Health
Visitor in Transfer of Care documentation. This will ensure that
PAE information (confirmed/confirmed absent/unknown) will
be more easily accessed and remain within the child’s health
records.”
COMMENT– Excellent – not only is this not included in the
Canadian Guidelines but it is only just being discussed for the
first time.
Ref.-Benefits of caseload midwifery to prevent fetal alcohol
spectrum disorder: A discussion paper.
https://doi.org/10.1016/j.wombi.2018.03.002
2.1.2. Recording the pattern of alcohol consumption.
Rational for revision “Canadian recommendation 2.3 has been
retained in full and clarified that the documentation should refer
to alcohol consumption during pregnancy. Canadian
recommendation 2.4 has been retained in full”
COMMENT- This is from Appendix 1 of the Canadian
Guidelines.

5. There is no reference otherwise in the Scotland Guidelines to
specific threshold.
The Canadian threshold requirements are only listed in
Appendix 1 and A3-FASD: Guidelines for Diagnosis across the
Lifespan Page Summary Paper.
They are not in the Tables 1and 2: Recommendations for the
diagnosis of fetal alcohol spectrum disorder [FASD], in Fetal
alcohol spectrum disorder: a guideline for diagnosis across the
lifespan.
Generally the discussion re. threshold etc. is ambiguous and
thereby difficult to interpret, but so is that of the 2015 Canadian
Guidelines.
Ever since FAS was first defined the threshold has fallen as
knowledge of the consequences of PAE has increased: threshold
is limited by our ability to identify it.
With the advent of epigenetics and functional neuroimaging, and
increasing evidence of the synergistic capability of prenatal
alcohol, care is surely required regarding threshold when
creating diagnostic guidelines.
Ref- Prenatal alcohol history – setting a threshold for diagnosis
requires a level of detail and accuracy that does not exist.
doi.org/10.1186/s12887-019-1759-1- “Conclusion: Confirming
PAE history can be difficult, but ensuring reliable and accurate
details on quantity, frequency, and timing of exposure is
impossible in a clinical setting. Three out of every four
individuals in the present study lost their FASD diagnosis
following implementation of 2015 Canadian FASD Guidelines.

6. A threshold might also imply that alcohol consumption below
threshold is safe.”
2.1.4. Referral
“A lack of knowledge and understanding of FASD among
healthcare professionals means they often may not feel
competent to carry out an assessment and make an appropriate
diagnosis. Variation in knowledge and awareness poses a
significant challenge to the implementation of a comprehensive
and consistent approach to the management of FASD.”
“R Referral of individuals for consideration of PAE as cause of
possible neurodevelopmental disorder should be made
sensitively and only when there is evidence of significant
physical, developmental or behavioural concerns and probable
PAE.”
COMMENT– No requirements of healthcare professionals to
have any knowledge or understanding of the consequences of
prenatal alcohol exposure. Also true of Canada for the last 42
years.
2.1.4- Referral - Rationale for revision
“To avoid unmanageable increases in inappropriate referrals for
any woman who has consumed significant amounts of alcohol
during pregnancy, a referral should not be made in the absence
of accompanying physical or developmental concerns in the
child or young person.”

7. COMMENT - does not make sense to me – Concerns by whom?
Surely, any child who was exposed to significant amounts of
alcohol should be screened, and the screening process defined.
The problem is that so often children have been diagnosed with
psychiatric behavioral diagnoses, and neurodevelopmental
issues missed.
3. Identification and assessment of children and young
people affected by prenatal alcohol exposure.
3.1. Diagnostic criteria
3.1.1 FASD - “Contribution of genetic factors should be
considered in all cases and referral may be indicated in atypical
cases or where PAE is uncertain.”
COMMENT– This raises the issue that FASD is a diagnosis of
exclusion i.e. if the child has a recognized other genetic
condition then it cannot be FASD. This is a fallacy. It implies
that all mothers, who are carrying a fetus with such a genetic
condition, do not drink alcohol during pregnancy. The correct
designation should be e.g Downs Syndrome with FASD, or
Downs Syndrome with prenatal alcohol exposure, thereby
providing the imperative of research into distinguishing
neurodevelopmental differences between the two.
3.1.2. At risk for neurodevelopmental disorder and FASD.
“The phrase from Canadian recommendation 5.2.1 “the
estimated dose at a level known to be associated with
neurodevelopmental effects” which was used to describe a
threshold for PAE has been removed to make consistent with the

8. UK CMO advice for no safe level of alcohol consumption
during pregnancy.
COMMENT – Good.
3.1.3. The use of FASD as a diagnostic term
“While the features associated with FASD represent a spectrum
of effects, the severity of neurodevelopmental effects in all areas
of assessment is not dependent upon whether facial features are
present or absent.”
COMMENT- YES-
Ref. Understanding the Occurrence of Secondary Disabilities in
Clients with Fetal Alcohol Syndrome [FAS] and Fetal Alcohol
Effects [FAE], Final Report, August 1996., Ann P. Streissguth
et.al., Fetal Alcohol and Drug Unit, University of Washington
School of Medicine.
COMMENT - The oft quoted statement that FAS is the most
severe form of FASD can lead to injustice.
Studies that compare FAS to ARND only compare the mean. In
addition, the behaviours are the same. The bottom line is that
individuals with FAS can present as less severe than those who
do not have the facial feature.
If the word “severe” is to be used it should be defined.
Ref-
- Neurodevelopmental Functioning in Children With FAS,
pFAS, and ARND.
- doi: 10.1097/DBP.0b013e3181d5a4e2

9. - Prenatal Alcohol Exposure Alters the Patterns of Facial
Asymmetry. doi: 10.1016/j.alcohol.2009.10.016
3.4.1. Cognition
COMMENT - Subdomain Testing
In my experience under the 2005 Guidelines subdomain testing
accounted for significant educational and social disfunction,
and contributed to most final diagnoses.
I doubt if the same can be said for the 2015 subdomain
Guidelines.
Ref - In follow-up to the Psychologists lunch/meeting for
Networking on 20 April 2012 at the
Fifth National Biennial Conference on Adolescents and Adults
with FASD:
from, Linda Weaver, PhD, RPsych (BC & AB)
drweaverandassoc@recn.ca
- Accuracy of motor assessment in the diagnosis of fetal
alcohol spectrum disorder
- doi: 10.1186/s12887-019-1542-3
- Complexities in understanding attentional functioning
among children with fetal alcohol spectrum disorder-
doi: 10.3389/fnhum.2014.00119

10. Other Comments
The Washington, Parent – Child Assistance Program, was not
mentioned
Ref.
- Recommendations from the Washington State Fetal Alcohol
Spectrum Disorders [FASD] Interagency Work Group.
No sensory or epigenetic references.
There is an urgent need to identify genetic, epigenetic,
anatomical, and biological consequences that are specific to
prenatal alcohol exposure, preconceptual alcohol exposure, and
combination of both.
The domains of brain function are not specific, but should be
done to establish the vital needs of the individual.
So, specific consequences would join the facial features in
establishing, initial, diagnostic criteria.
PROPOSAL FOR A CHANGE IN THE NOMENCLATURE OF FASD, WITH
REASONS IN SUPPORT OF THE PROPOSAL.
Barry Stanley. 4th
April, 2017. Updated 13th. March, 2020.
With the development of epigenetics showing the contribution of
preconceptual and prenatal alcohol to physical and

11. neurological developmental impairments, both in the immediate
offspring and future generations, the following is proposed –
The present nomenclature FAS, FASD, ARND be replaced by
the following
Diagnosis - Alcohol Related Developmental Disabilities.
[ARDD]
Diagnostics
Alcohol origin
1- Paternal pre conceptual
2- Maternal pre conceptual
3- Maternal pre natal
Full Physical and optimal neuropsychological testing.
Neuroimaging
Genetic/Epigenetic correlations
DSM correlations.
Sensory systems assessment
The degree to which Neuroimaging, the Genetic/Epigenetic and
DSM correlations add weight to the diagnosis to be determined.
REASONS
1- There are now a number of FASD diagnostic guidelines that
differ to some degree. This proposal would unite them, and
avoid confusion.

12. 2- Elimination of “fetal”, and inclusion of the contribution of
the father, would help to reduce the stigma suffered by birth
mothers.
3- Also included would be the findings of epigenetics and
functional imaging, and other diagnostic tools yet to be
discovered.
4- The proposed diagnostic term would embrace all the new
developments of our understanding
of the effects of prenatal and pre conceptual alcohol; with
inclusion of the effects of alcohol consumption by the adolescent
on brain development; other consequences such as sensory
disabilities; and the ever increasing number of illnesses to
which preconceptual and prenatal alcohol cause, or contribute.
5- “Disabilities” is the term increasingly being used, by
governments, agencies and individuals, to describe the
developmental consequences of prenatal alcohol exposure.
6- The Ontario Provincial Government and the Canadian Federal
Government are increasingly referring to “developmental
disabilities” without reference to the role of alcohol. Adoption of
this proposal will ensure that the role of alcohol remains in
focus, in spite of any governmental efforts to the contrary.
7- This would combat the erroneous concept that the
neurodevelopmental consequences of prenatal alcohol exposure
are made by a process of exclusion.