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Challenges in accurately assessing prenatal alcohol exposure in a study
of Fetal Alcohol Spectrum Disorder in a youth detention center.
Jacinta Freeman , Carmen Condon , Sharynne Hamilton , Raewyn C
Mutch , Carol Bower , Rochelle E Watkins
First published: 14 November 2018
Copyright © 1999-2018 John Wiley & Sons, Inc. All rights reserved
https://doi.org/10.1111/acer.13926
This article has been accepted for publication and undergone full peer
review but has not been through the copyediting, typesetting, pagination
and proofreading process, which may lead to differences between this
version and the Version of Record. Please cite this article as doi:
10.1111/acer.13926
Abstract
Background
Prenatal alcohol exposure (PAE) can result in permanent disability,
including physical, neurodevelopmental and cognitive impairments,
known as Fetal Alcohol Spectrum Disorder (FASD). Individuals with
FASD are more likely to engage with the law, including being placed in
detention, than individuals without FASD. Young people who were
sentenced to detention participated in a FASD prevalence study in
Western Australia (WA). The diagnosis of FASD requires a
multidisciplinary assessment and confirmation of maternal alcohol
consumption during pregnancy. Obtaining accurate assessment of
prenatal alcohol exposure (PAE) for young people participating in the
study was challenging.
Method
An interview with the birth mother or other responsible adult for young
people sentenced to detention in WA was conducted as part of the FASD
assessment. The Alcohol Use Disorders Identification Test, consumption
subset (AUDIT-C), other relevant questions and documentary evidence
were used to assess PAE. PAE was categorized according to the
Australian Guide to the Diagnosis of FASD: no PAE reported,
confirmed or confirmed high-risk, or unknown.
Results
Among the 101 participants, information on PAE was unable to be
obtained for 13 (13%) young people. Of the remaining 88 participants
with information of PAE, 41 reported no PAE and 47 had confirmed
PAE.
Conclusion
Accurately assessing prenatal alcohol consumption is challenging in any
setting but it is exceptionally challenging when assessed 13-17 years
retrospectively as part of a FASD assessment for a young person
sentenced to detention. Recording and recoding detailed qualitative
responses was required to provide an accurate assessment of PAE using
the AUDIT-C. Standardized recording of PAE in antenatal and birth
records would facilitate later assessments for FASD and provide
opportunities for advice and support for women who continue to drink
during pregnancy.
Comment
There is a great need to move on from the present Canadian Guidelines,
and similar diagnostic criteria, for prenatal alcohol exposure.
The answer lies with neurology and epigenetics. This does not mean that
criteria used in the present methods are not important. On the contrary
they are vital for understanding and helping the individuals concerned.
With the development of epigenetics showing the contribution of pre
conceptual and pre natal alcohol to physical and 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 neuropsychological testing , as in the Canadian
Guidelines and the Washington 4- Digit Code.
Neuroimaging
Genetic/Epigenetic correlations
DSM correlations.
The degree to which Neuroimaging, the Genetic/Epigenetic and DSM
correlations add weight to the diagnosis to be determined.
Barry Stanley
May 17th
, 2016
Updated 19th
. Oct. 2016, 4th
April, 2017.
Alcohol Related Developmental Disabilities.
1- There are now a number of fasd diagnostic guidelines that differ to
some degree. This
proposal would include all of them and avoid confusion.
2- The proposed diagnostic term would embrace all the new
developments of our understanding
of the effects of prenatal and pre conceptual alcohol.
Elimination of “fetal” would allow inclusion of the effects of alcohol
consumption by the
adolescent, whose brains development is still continuing. It would also
help to reduce the stigma
suffered by birth mothers.
3- The new diagnostic term would include those consequences of
prenatal alcohol exposure
that are not included in the various diagnostic processes, especially
sensory disabilities that
plague those who were exposed to prenatal alcohol. It would allow for
the inclusion of
epigenetics and functional imaging, and no doubt other diagnostic tools
yet to be discovered.
3- “Disabilities” is the term increasingly being used, by governments,
agencies and individuals,
to describe the developmental consequences of prenatal alcohol
exposure.
4- 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.
Summary -
Alcohol Related Developmental Disabilities is inclusive.
FASD[S] is exclusive.

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Challenges in accurately assessing prenatal alcohol exposure in

  • 1. Challenges in accurately assessing prenatal alcohol exposure in a study of Fetal Alcohol Spectrum Disorder in a youth detention center. Jacinta Freeman , Carmen Condon , Sharynne Hamilton , Raewyn C Mutch , Carol Bower , Rochelle E Watkins First published: 14 November 2018 Copyright © 1999-2018 John Wiley & Sons, Inc. All rights reserved https://doi.org/10.1111/acer.13926 This article has been accepted for publication and undergone full peer review but has not been through the copyediting, typesetting, pagination and proofreading process, which may lead to differences between this version and the Version of Record. Please cite this article as doi: 10.1111/acer.13926 Abstract Background Prenatal alcohol exposure (PAE) can result in permanent disability, including physical, neurodevelopmental and cognitive impairments, known as Fetal Alcohol Spectrum Disorder (FASD). Individuals with FASD are more likely to engage with the law, including being placed in detention, than individuals without FASD. Young people who were sentenced to detention participated in a FASD prevalence study in Western Australia (WA). The diagnosis of FASD requires a multidisciplinary assessment and confirmation of maternal alcohol consumption during pregnancy. Obtaining accurate assessment of
  • 2. prenatal alcohol exposure (PAE) for young people participating in the study was challenging. Method An interview with the birth mother or other responsible adult for young people sentenced to detention in WA was conducted as part of the FASD assessment. The Alcohol Use Disorders Identification Test, consumption subset (AUDIT-C), other relevant questions and documentary evidence were used to assess PAE. PAE was categorized according to the Australian Guide to the Diagnosis of FASD: no PAE reported, confirmed or confirmed high-risk, or unknown. Results Among the 101 participants, information on PAE was unable to be obtained for 13 (13%) young people. Of the remaining 88 participants with information of PAE, 41 reported no PAE and 47 had confirmed PAE. Conclusion Accurately assessing prenatal alcohol consumption is challenging in any setting but it is exceptionally challenging when assessed 13-17 years retrospectively as part of a FASD assessment for a young person sentenced to detention. Recording and recoding detailed qualitative responses was required to provide an accurate assessment of PAE using the AUDIT-C. Standardized recording of PAE in antenatal and birth records would facilitate later assessments for FASD and provide opportunities for advice and support for women who continue to drink during pregnancy.
  • 3. Comment There is a great need to move on from the present Canadian Guidelines, and similar diagnostic criteria, for prenatal alcohol exposure. The answer lies with neurology and epigenetics. This does not mean that criteria used in the present methods are not important. On the contrary they are vital for understanding and helping the individuals concerned. With the development of epigenetics showing the contribution of pre conceptual and pre natal alcohol to physical and 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 neuropsychological testing , as in the Canadian Guidelines and the Washington 4- Digit Code. Neuroimaging Genetic/Epigenetic correlations DSM correlations. The degree to which Neuroimaging, the Genetic/Epigenetic and DSM correlations add weight to the diagnosis to be determined.
  • 4. Barry Stanley May 17th , 2016 Updated 19th . Oct. 2016, 4th April, 2017. Alcohol Related Developmental Disabilities. 1- There are now a number of fasd diagnostic guidelines that differ to some degree. This proposal would include all of them and avoid confusion. 2- The proposed diagnostic term would embrace all the new developments of our understanding of the effects of prenatal and pre conceptual alcohol. Elimination of “fetal” would allow inclusion of the effects of alcohol consumption by the adolescent, whose brains development is still continuing. It would also help to reduce the stigma suffered by birth mothers. 3- The new diagnostic term would include those consequences of prenatal alcohol exposure that are not included in the various diagnostic processes, especially sensory disabilities that plague those who were exposed to prenatal alcohol. It would allow for the inclusion of epigenetics and functional imaging, and no doubt other diagnostic tools yet to be discovered. 3- “Disabilities” is the term increasingly being used, by governments, agencies and individuals, to describe the developmental consequences of prenatal alcohol exposure.
  • 5. 4- 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. Summary - Alcohol Related Developmental Disabilities is inclusive. FASD[S] is exclusive.