Video: Diagnosis of FASD in the Adolescent Years

Challenges and strategies for preparing a teen for diagnosis are discussed, along with assessment methods, networks, and research.

About this video

Production date: January 26, 2011
Length: 1 hour, 43 minutes
Presenters: Dr. Gail Andrew, Dr. Carmen Rasmussen, Dr. Jacqueline Pei
Download slide notes for this video (PDF, 23 pages)

Dr. Gail Andrew, MDCM, FRCP (C) is a Developmental Pediatrician and Medical Director of the Glenrose Rehabilitation Hospital FASD Clinical Services, which is the centre for FASD diagnosis, training, education and research.

Dr. Carmen Rasmussen, PhD is an Assistant Professor in the Department of Pediatrics and member of the Centre for Neuroscience at the University of Alberta. She’s also a research affiliate at the Glenrose Rehabilitation Hospital.

Dr. Jacqueline Pei, R. Psych., PhD is a Registered Psychologist specializing in neuropsychological assessment and is an assistant professor in Educational Psychology at the University of Alberta. She’s also a member of the Glenrose Rehabilitation Hospital diagnostic team.

Outcomes

This video will help you understand:

  • challenges and strategies for preparing a teen for diagnosis
  • core assessment methods
  • importance of shared networks
  • what some research is telling us about youth with FASD

Content

  1. Introduction and review of FASD (11:53)
  2. Studies (28:36)
  3. Intervention research (27:13)
  4. FASD and teens (17:32)
  5. Questions (16:22)

Introduction and review of FASD

Research into FASD has found that:

  • alcohol exposure during pregnancy can damage fetal brain cells
  • neuro-imaging studies are teaching us about the extent of brain damage
  • spectrum of damage depends on amount and pattern of alcohol use, and timing in gestation
  • damage also depends on maternal and fetal factors
  • factors include genetics, epigenetics, nutrition, other teratogens, stress
  • adverse postnatal experiences can compound alcohol-related brain damage
  • alcohol exposure is a risk factor for hardships in learning and behavioural regulation and is not definite diagnosis

In early childhood, difficulties may not be as clear, especially in a supportive setting. All children with prenatal alcohol exposure (PAE) ideally should have developmental monitoring, access to early interventions and stable homes.

Often PAE is not known at birth and care is not ideal. Assessment in early years may not identify ample evidence for brain damage and FASD diagnosis. The child’s behaviour is often misunderstood as a lack of motivation or poor parenting, and effective supports aren’t provided.

Limited access to FASD diagnostic services is a barrier to diagnosis in many areas. For teens, access can be hindered by many school and home placements, dysfunctional families and no advocates.

Current research has identified critical deficits in brain function in FASD that relate to cognitive function:

  • memory
  • inhibition
  • shifting
  • flexible thinking
  • planning
  • sequencing
  • predicting
  • judgment
  • functional communication

Many of the above brain domains cannot be assessed until ages 8 to 10.

Symptoms

Symptoms in early years are often:

  • attention problems
  • oppositional behaviours
  • learning problems
  • sensory reactivity

In teens, more obvious symptoms include:

  • poor mood regulation
  • anger
  • aggression
  • anxiety
  • depression
  • low self-esteem

However, these are often treated as mental health issues without fully considering brain damage. Gathering evidence to prove an FASD diagnosis in teens is difficult.

Diagnostic dilemma
Are the problems in teen’s secondary disabilities from FASD not being diagnosed early and adverse life experiences? Or are the behaviours and mental health symptoms an expression of primary brain damage from PAE? Or are they both?

Disabilities linked with FASD can be considered primary or secondary:

Primary: a direct result of brain damage and include decreased memory and IQ.

Secondary : resulting from the primary disability and environmental interaction. In theory they can be prevented and treated.

Studies

Streissguth et al. (1996)

A longitudinal study with 415 individuals (age 6-51 years) with FASD.

Among teens and adults:

  • more than 90% had mental health problems
  • 49% had inappropriate sexual behaviours
  • over 60% had disrupted school experience
  • 60% had been in trouble with the law
  • 50% had been confined (imprisonment, inpatient mental health or substance abuse programs)
  • 35% had alcohol and drug problems

Secondary disabilities:

  • 67% experienced physical, sexual or domestic abuse
  • 80% were not reared by their biological mother

Protective factors:

  • living in a good and stable home
  • few changes in living environment
  • not being exposed to violence
  • receiving services for developmental disabilities
  • being diagnosed before age of 6

Risk factors:

  • having FAE (fetal alcohol effects) rather than FAS
  • having an IQ above 70
  • probably because those above 70 did not qualify for services

Streissguth et al. (1994, 1999)

A longitudinal study of PAE with 500 participants

  • at age 14, PAE was pointedly linked with problems in attention, behavior, memory, information processing speed, learning, and arithmetic
  • effects were dose dependent

Carmichael Olson et al. (1998)

Compared 9 teens with FAS to 174 with minimal or no PAE on neuropsychological tests.

  • teens with FAS had problems with:
    • behavior
    • social skills
    • school
    • attention
    • memory
    • cognitive flexibility
    • planning
    • processing speed and accuracy

Executive functioning (EF)

  • EF involves higher-order cognitive processes involved in goal-oriented behaviour (Zelazo & Muller, 2003).
  • EF is mediated by frontal lobe of brain
  • Involves inhibition, set shifting, working memory, planning, fluency, strategy employment, decision making and organization
  • children, teens and adults with PAE and FASD have noteworthy impairments in EF (Rasmussen, 2005)

Rasmussen and Bisanz (2009)

Looked at the profile of EF deficits in children and whether there were age differences in EF

  • found that the gap in EF relative to the norm broadens as the children age

Schonfeld et al. (2005)

Looked at moral maturity and delinquency in teens with and without PAE.

  • those with PAE scored much worse on moral maturity
  • verbal IQ predicted moral maturity
  • PAE predicted moral judgment of relationships
  • social desirability, gender and home placement didn’t predict moral maturity, but inhibition and age did

Results specific to delinquency

  • those with PAE scored higher on delinquency
  • age, gender, home placement and social desirability predicted delinquency
  • among PAE group, those in foster homes or biological homes displayed more delinquency than those in adoptive homes
  • cerebral IQ and inhibition did not predict delinquency
  • moral maturity related to delinquency
  • PAE group more likely to have probable conduct disorder

Lynch et al. (2003)

Looked at the effect of risk factors other than PAE on delinquency in adolescents

  • found that life stress, drug use and lower parental supervision were more related to delinquency among teens than PAE
  • suggest it’s important to examine multiple risk factors when looking at delinquency in PAE

FASD and the Criminal Justice System

Adolescents and adults with FASD are at risk for ending up in the criminal justice system.

  • Canadian study found that 23% of youth remanded for psychiatric inpatient assessment had FASD
  • Canadian report showed that 10% of inmates had FASD, which is 10 times higher than general population

Underlying factors (Rasmussen & Wyper, 2007)

Significant EF deficits in people with FASD likely contribute to high risk behaviours.

  • problems with EF skills such as planning, cause-effect reasoning, learning from mistakes and inhibition may be related to why youth with FASD are numerous in the justice system
  • people with frontal lobe damage show similar risky and maladaptive behaviours as those with FASD
  • brain defects of PAE persist into adolescence (Sowell et aI., 2002)
  • with FASD, adolescence is a time of heightened vulnerability
  • these persons have even more of a gap between their brain’s cognitive and normal development

Intervention research

Very little intervention research exists; particularly for teens. Research into interventions with teens have focused on brain change and behavioural change, both geared towards the ultimate goal of improved function.

Behaviour change approaches tend to either target skill development in youth or improved systems of support.

Project Step Up (Mary O’Connor)

  • educational sessions for youth and caregivers
  • address alcohol misuse and negative behavioural consequences
  • includes motivational enhancement techniques, normative feedback, risk assessment and coping skills training
  • treatment and control groups are evaluated 6 months post-discharge

McDaniel Youth Program (Henneveld, Rasmussen, Pei, Poth)

  • ages 14-19
  • one-on-one mentorship to help develop self-determined goals
  • focuses on strengthening life skills
  • connects to other needed supports
  • pre, interim and post program information are collected from youth and caregiver over 3 years

Professional development for teachers

  • focus groups with caregivers, teachers, administrators, and allied professionals working in schools
  • examined how to improve interventions provided in schools
  • several themes emerged, including a need for training that takes learning from head knowledge to behaviour

FASD professional development program (Hughes, Wakabayahsi, Clark)

  • 2 day training
  • 4 half day workshops
  • 1 year long mentorship
  • led to improved classroom behaviour of students diagnosed with FASD

Brain change approaches shape behavior through less direct means, and is meant to augment other interventions.

Attention process training (Kerns, Gooch, Pei, Rasmussen)

A computer program that thoroughly exercises and builds the capacity to:

  • sustain attention
  • deal with distraction (selective attention)
  • hold information in working memory
  • engage executive function skills

Also helps to develop self-awareness and self-regulation of cognition and emotional response in response to growing complex demands of the game.

Motor system training (Kodituwakku, Tesche)

A training group practiced 3 complex sequences for 10 minutes each day for 8 weeks on a laptop computer.

The computer was equipped with a finger tapping device.

Preliminary results showed evidence of training-induced plasticity of the motor networks in children with FASD.

FASD and teens

Introductions

Need to ask questions to know the teen’s story:

  • where have they been and what have they experienced?
  • who’s coming to the diagnostic clinic with them?
  • what do they know about the reason they are there and about PAE?
  • what supports are there after diagnosis and transition to adulthood?
  • who wants the assessment? School system? Youth court? Child welfare? Caregiver?

Assessment

Assessment involves:

  • examining the following:
    • brain domains
    • mental health
    • addiction potential
    • safety to themselves and others
    • relative strengths to use for teaching and employability
    • medical health issues
  • data gathering prior to clinic day to confirm the alcohol exposure
  • engaging with the caregiver and school
  • clinic testing and formulation of diagnosis and comorbidities
  • preparing recommendations for follow up

Supports

Supports during the assessment:

  • a special person who has positive connection should accompany teen
  • involvement of the birth mother needs to be sensitive, respectful, supportive of her
  • involvement of the school critical for shift in programming and transition supports
  • other supports include social workers, youth workers, mentors

Considerations

An important ethical question to ask is: how much to tell the teen prior to assessment on a case to case basis?

  • balance teen rights vs. cognitive level and mental stability
  • informing teen of diagnosis also case-based
  • maintain a positive approach – let the teen know you’re here to find out about how they learn, and to help with school and future planning
  • knowledge about FASD can help teen accept their differences and need for help

After the assessment, follow up with supports to ensure the teen is supported, and resources are in place for transition planning.

Community responsibility

To help lift the stigma of FASD, a community should:

  • raise awareness of FASD in teens and adults, including police, physicians, pharmacists
  • create opportunities for safe recreation and supervision, supportive workplaces, living opportunities with dignity
  • prevent future pregnancies that are alcohol exposed
  • integrate assessment, diagnosis and intervention
  • encourage creative problem solving and flexible program delivery among service providers

Summary

  • assessment in early years may not identify enough evidence for brain damage and FASD diagnosis
  • deficits may not really present until the child is a teen
  • disability in FASD can be:
    • primary as a result of brain damage from PAE
    • secondary as a result of primary disability and environmental interaction

People with FASD have major impairments in executive function. This is likely related to their over representation in the justice system and to high-risk behaviours. In FASD, the teenage years are a time of heightened vulnerability.

These youth have even more of a gap between their cognitive development and normal development. Research into interventions with teens generally targets brain change and behavioural change, both geared towards the ultimate goal of improved function.

Created:
Modified: 2015-09-09
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