FASD as a Stalking Horse17th international conference on offenders with an intellectual and/or

developmental disability

Birmingham 2018

Anthony Duncan

New Zealand

Foetal Alcohol Spectrum Disorder• Foetal Alcohol Spectrum Disorder (FASD) is a term used to describe a

range of significant adverse effects on development when alcohol isconsumed during pregnancy. FASD is a brain-based neurodisabilitythat can include physical abnormalities.

• International prevalence studies suggest FASD is conservativelyestimated to occur in at least 1 out of every 100 live births and maybe much higher in communities where binge and hazardous use ofalcohol is prevalent.

This would equate to around 600 childrenborn in New Zealand each year with FASD.

• No research has confirmed the prevalence in New Zealand but it isthought the numbers could be substantially higher due to hazardousdrinking patterns

• FASD is linked to primary disabilities, those that are the direct toxiceffect of alcohol altering cellular development. The brain andnervous system are affected the most because they are underconstruction throughout the pregnancy, leading to lifelong cognitive,functional and emotional difficulties.

In this talk I will

• Briefly review Foetal Alcohol Spectrum Disorder

• Describe it as a meme.

• And suggest this is over egging the FASD pudding.

• Review the social model of disability in relation to the over hyping ofFASD.

• And then consider how some of the good things that came out ofthe over hyping of FASD might be transferred to the support andmanagement of other developmental disabilities.

The first recognition in the scientific literature ofa variety of birth defects and developmental

disabilities in offspring born to alcoholic parentsis attributed to Lemoine and colleagues.

Lemoine P, Harousseau H, Borteyru JP, Menuet JC.

Les enfants de parents alcooliques

- anomalies observées: à propos de 127 cas.

Ouest Med 1968;21:476-82.

Fetal alcohol spectrum disorder:Canadian guidelines for diagnosis

Albert E. Chudley, Julianne Conry, Jocelynn L. Cook, Christine Loock,Ted Rosales, Nicole LeBlanc.

CMAJ • MAR. 1, 2005; 172 (5 suppl)

• THE DIAGNOSIS OF FETAL ALCOHOL SPECTRUM DISORDER (FASD) iscomplex and guidelines are warranted.

• A subcommittee of the Public Health Agency of Canada’s NationalAdvisory Committee on Fetal Alcohol Spectrum Disorder reviewed,analysed and integrated current approaches to diagnosis to reachagreement on a standard in Canada.

In this document, we discuss the diagnostic approach todisabilities associated with prenatal alcohol exposure

• Fetal alcohol spectrum disorder (FASD), along with its most visiblepresentation, fetal alcohol syndrome (FAS), is a serious health andsocial concern to Canadians.

• FASD is an umbrella term describing the range of effects that canoccur in an individual whose mother drank alcohol during pregnancy.

• These effects may include physical, mental, behavioural and learningdisabilities with lifelong implications.

• The term FASD is not intended for use as a clinical diagnosis.

Risk factors in Chudley et als paper

• A common misconception is that FASD is associated withethnocultural background.

• However, the data suggest that risk factors for prenatal alcoholexposure include

• higher maternal age

• lower education level,

• Prenatal exposure to cocaine and smoking,

• custody changes,

• lower socioeconomic status

Paternal drinking

• drug use at the time of pregnancy

• reduced access to prenatal and postnatal care and services

• inadequate nutrition

• and a poor developmental environment

• (e.g. stress, abuse, neglect)

• However there is no other mention of a poor developmentalenvironment in the text of the paper

A More Recent GuideSearch for word “neglect”

Search of term “Child Abuse”

• Not mentioned at all

Search on term “violence”

Do I Believe in FASD?

I suspect that in some cases where FSAD isdiagnosed sometimes other importantcontributing factors are overlooked .

Has FASD become a meme driven phoenixthat may yet crash and burn

• The word meme was coined by Richard Dawkins in his 1976 book TheSelfish Gene as an attempt to explain the way cultural informationspreads;

• An element of a culture or system of behaviour passed from oneindividual to another by imitation or other non-genetic means.

• Internet memes are a subset of this general meme concept specific tothe culture and environment of the Internet.

Signs FASD has spread

• Hard to attend a presentation on youth offending without FASD being amajor focus.

• NZ Ministry of Social Development website includes :• All tamariki are unique and have mana, and the journey to oranga and

success for tamariki with FASD needs special knowledge and practice.• Studies suggest 30-50% of children and young people in care will have

FASD.• The challenges of this brain-based disability can heavily impact tamariki,

their whānau and the social workers, caregivers, schools and professionals surrounding them.

• If you are working with a child or young person with FASD or other neuro-developmental condition, it's important to know 'yes' there issomething you can do

Productivity losses associated with FetalAlcohol Spectrum Disorder in New Zealand

• Brian Easton, Larry Burd, Jürgen Rehm, Svetlana Popova

• NZMJ 19 August 2016, Vol 129 No 1440

• AIM: To estimate the productivity losses due to morbidity andpremature mortality of individuals with Fetal Alcohol SpectrumDisorder (FASD) in New Zealand (NZ).

• CONCLUSION: The estimated productivity losses associated with FASDfurther reinforces that effective FASD prevention as a primary publichealth strategy may be of significant value.

There are (probably) reasonably pure casesare out there.

Napier mother says raising a fetal alcohol spectrum disorder child is a'life sentence'

• Kim Milne and her son David talk about the challenges of living withDavid's fetal alcohol spectrum disorder.

• With its sweeping views out over Hawkes Bay, Kim Milne's seafront Napierhome is a "very nice jail," she says.

• The reason she feels imprisoned is her 15-year-old adopted son David'sfetal alcohol disorder, which means his behaviour is unpredictable and hehas to be monitored 24 hours a day.

• "He's highly impulsive. We have locks on our doors to keep him in becausehe could wander off in the middle of the night, and he doesn't even knowwhy he's doing it – a thought comes into his brain and he's off. That's ourlife."

I have done robust and as detailed review as Ithink I needed to do of the reports of people

managing an adolescent with FASD• And a lot of them are about

• Adoptive Parents

• Foster Parents

• Grandparents raising the child ofthe black sheep of the family

Why Might This Be?• Does drinking in pregnancy sufficient to cause brain damage

somehow inoculate a child against postnatal developmental trauma?

• And even lead to its amelioration?

• Does it just get lost in the morass of other problems in multi-problemfamilies?

• Or does child being presented as having FASD and so the familyproblem mean other problems are minimised or seen as the result ofthe stress of having a child with FASD?

• “Yes she was getting her life back together but he drove her back todrink because of his FASD”

• Or is it just that some professionals need to remain blind to the realityof the impact of the child abuse and neglect all around them?

Local Brain Functional Activity Following Early Deprivation:A Study of Postinstitutionalized Romanian Orphans

• Harry T. Chugani, et al NeuroImage 14, 1290–1301 (2001)

• Early global deprivation of institutionalized children may result inpersistent specific cognitive and behavioral deficits.

• In order to examine brain dysfunctiondunderlying these deficits, wehave applied PET scanning to 6 males, 4 females mean age 8.8 yearsadopted from Romanian orphanages.

• Consistent with previous studies of children adopted fromRomanian orphanages, neuropsychological assessment of Romanianorphans in the present study showed mild neurocognitiveimpairment.

Adopted Romanian orphans 'still suffering inadulthood'• BBC News 23 February 2017

• Initially, all 165 were struggling with developmental delays and malnourishment.

• While many of those who spent less than six months in an institution showed remarkablesigns of recovery by the age of five or six, children who had spent longer periods inorphanages had far higher rates of social, emotional and cognitive problems during theirlives.

• Common issues included difficulty engaging with other people, forming relationships andproblems with concentration and attention levels which continued into adulthood.

• This group was also three to four times more likely to experience emotional problems asadults, with more than 40% having contact with mental health services.

• Despite their low IQs returning to normal levels over time, they had higher rates ofunemployment than other adopted children from the UK and Romania.

• The research team said this was the first large-scale study to show that deprivation andneglect during early childhood could have a profound effect on mental health andwellbeing in later life

Reductio Ad Absurdum?

• Some Romanian orphans may have had prenatal alcohol exposure.

• But it does sounds like early neglect may have some long lastingeffects.

• If they were assessed now without knowledge of history would theylook to have FASD?

'I stopped drinking alcohol as soon as I found out I waspregnant - and my son still has FASD

• Natyra describes 16-year battle to get a diagnosis for Nicowho can't stand music and melts down screaming at thesmell of Chinese food.

• Living more than a decade without a diagnosis for little Nico, Natyrahad started to do her own investigating - namely through Dr Google.

• She came across FASD. He had all the behavioral symptoms. But shecouldn't believe it.

• 'I only drank until I found out I was pregnant at eight-and-a-halfweeks and then I stopped,' she said. It turned out that was enough.

• There are 50,000 teratogens – pre- and post-natal agents – which canaffect a fetus's development. Alcohol is one of them.

The greatest impact is behavioural.

• Changes at the cellular level affect brain design, impacting memory storage, processing speed, the ability to analyze, or to make decisions.

• Around 10 percent of FASD children are also born with physical symptoms - thinupper lips, smaller eyes, smaller heads - which makes their condition easier todiagnose.

• That wasn't the case with Nico ('he didn't have any of the facial features'). Andbecause Natyra's alcohol consumption had been so minimal, FASD wasn'tconsidered for years.

• Natyra married when Nico was two, and her now-husband adopted him, treatinghim as his own son.

• It was around then that they started to notice that Nico wasn't hitting somedevelopmental milestones. His behavior went back and forth from worse tobetter.

Nico exhibits many of the typical,now-recognized symptoms.

• He is sensitive to sounds - music can't be played too loudly, whatwould be considered background music for most of us - and is sosensitive to smells that some aromas can agitate him.

• 'We used to go to the West Edmonton Mall because it was nice towalk around there. And there was a Chinese market and every timewe walked by, he would have a meltdown. He would cover his eyesand ears, he just couldn't handle it.

• 'To this day, every time we drive by, he goes, "Ugh, it's so disgusting".‘

• Nico's clothing has to be layered because his skin is sensitive tocertain fabrics, such as wool. He has a lot of repetitive behaviors,whistling in particular.

Do You Have Any OtherPossible Diagnoses in Mind?

Reductio Ad Absurdum in Nico’s case?

• Possibly not

• Unusually in the reported cases this is the natural child of this mother.

• No Family History

• No childhood illnesses of head trauma

• Not abused or neglected.

• As far as we know

But there are advantages to the diagnosis

• The end of the search for meaning

• Access to supports

• A sense of belonging

• A repudiation of claims it is due to family pathology

A question I asked and the answer from aconference on FASD in New Zealand in 2016.

• “Yes that is all ready interesting but the way you describe it once thediagnosis is made everything changes and everything gets better.

• What about the multi-problem families and the kids who aredeveloping an antisocial personality disorder?”

• “I have never met a family with a child with FASD who were not goodpeople and who tried really hard to help the child once they had thediagnosis.”

Questions I should have asked.

• In what percentage of the cases you see is the child the natural childof the presenting mother?

• So are you saying a mother drinking alcohol in pregnancy inoculatesfamilies against later developing psychopathology?

Advantages of the Diagnosis

• The end of the search for meaning

• Access to supports

• A sense of belonging

• A repudiation of claims it is due to family pathology

This spread has been really importantand I am not

And as I doctor who has struggled a carve out aspace in the world according to disability FASD is

quite refreshing and energising.

The way intellectual impairment/disability isconceptualised and responded has some cultural

determinants• WHO classification

• Impairment• Disability• Handicap.

• It is society that disables and sothe level we need to intervene issocietal.

• Seeing a disability as a “sickness”that needs to be managed bydoctors is wrong.

• Normalisation

Normalization

• Involves the acceptance of some people with disabilities, with theirdisabilities, offering them the same conditions as are offered to othercitizens.

• It involves an awareness of the normal rhythm of life – including thenormal rhythm of a day, a week, a year, and the life-cycle itself (e.g.,celebration of holidays; workday and weekends).

• It involves the normal conditions of life – housing, schooling,employment, exercise, recreation and freedom of choice previouslydenied to individuals with severe, profound, or significant disabilities

This approach includes "the dignity of risk"

• Rather than an emphasis on "protection" and is based upon theconcept of integration in community life.

• The theory is one of the first to examine comprehensively both theindividual and the service systems, similar to theories of humanecology which were competitive in the same period.

• The theory undergirds the deinstitutionalization and communityintegration movements, and forms the legal basis for affirming rightsto education, work, community living, medical care and citizenship.

• In addition, self-determination theory could not develop without thisconceptual academic base to build upon and critique

"SOCIAL ROLE VALORIZATION” (SRV) is the name given to a concept fortransacting human relationships and human service, formulated in 1983

by Wolf Wolfensberger, Ph.D.,• The successor to his earlier formulation of the principle of

normalization

• His most recent definition of Social Role Valorization is: “Theapplication of empirical knowledge to the shaping of the current orpotential social roles of a party (i.e., person, group, or class) --primarily by means of enhancement of the party’s competencies &image -- so that these are, as much as possible, positively valued inthe eyes of the perceivers”

The question is in how we integrate this bio into thepsychosocial when we work with people and their families.