Vicki  Russell  CEO  NOFASD  Australia  

Fetal alcohol spectrum disorders: Using a fetal alcohol-neurobehavioural (FA-NB) approach in working with young people

Younger People with Very High and Complex Care Needs Conference, Melbourne June 2014

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Objec9ves  1.  Fetal  Alcohol  Spectrum  Disorders  &  impact  

across  the  lifespan    

2.  The  Fetal  Alcohol-­‐  Neurobehavioural  (FA-­‐NB)  approach    

3.  Developing  &  implemen9ng  strategies/  accommoda9ons  for  community  case  management  &  working  in  custodial  seOngs  

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Fetal  Alcohol  Spectrum  Disorders  &  impact  across  the  lifespan    

   

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Fetal  Alcohol  Spectrum  Disorders  

•  Fetal  Alcohol  Syndrome  (FAS)  –  1:1000  •  Par9al  Fetal  Alcohol  Syndrome  (pFAS)  

•  Structural  abnormali9es  

•  Face,  growth,  central  nervous  system  impairments  

•  Alcohol  Related  Neurodevelopmental  Disorder  (ARND)  –  1:100  •  Func9onal  deficits  

•  Confirmed  fetal  alcohol  exposure  

(c)  NOFASARD  2013  

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Facts  •  Dose/9me  rela9onship  across    gesta9on  

•  No  known  minimum  ‘safe’  amount  of  alcohol  

•  Impact  on  the  central  nervous  system    

•  Every  individual  living  with  an  FASD  is  different    •  Life9me  impact  of  the  condi9on  

•  Cannot  rely  on  IQ  as  measurement  of  disability-­‐  can  range  from  below  normal  to  above  average  

•  A  lower  level  of  adap9ve  func9oning  (manage  daily  life)  is  common  -­‐  more  significantly  impaired  than  low  IQ  

•  Mul9ple  systems  implica9ons  across  educa9on,  criminal  jus9ce,  economic  support,  employment,  child  protec9on  and  family  support  services  

•  Consider  too,  the  parent  who  uses  alcohol  

(c)  NOFASARD  2013  

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(c)  NOFASARD  2013  

Paternal  alcohol  use  1.  Low  birth  weight  

2.  Impaired  cogni9ve  skills,  increased  hyperac9vity  in  sons  of  alcoholic  fathers  

3.  Changes  in  behaviors  of  sons  of  alcoholic  fathers  

4.  Low  count  and  altered  structure  of  sperm  

5.  Lower  rates  of  pregnancies;  sons  were  less  fer9le  

6.  Decreased  ac9vity  of  sperm  and  lower  testosterone  levels  

7.  Effects  on  epigene9cs,  or  expression  of  genes  on  cogni9ve  func9oning  

Malbin,  FASCETS  2013  

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Preven9on  Context  1.  Society’s  ‘love  of  alcohol’  2.  ‘Othering’  –    we  target  some  mothers,  some  

drinkers,  some  behaviours  because  they  are  not  us  

3.  Values  and  beliefs  perpetuate  barriers  &  limit  safety  for  disclosure  

4.  FA  ocen  regarded  as  the  ‘invisible’  disability  –  denial  of  the  condi9on  -­‐  too  much  reliance  on  facial  features  missing  the  neurobehavioural  part  of  the  spectrum  

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Primary  characteris9cs  •  Developmental  level  of  func9oning  •  Sensory  systems  •  Nutri9on  •  Language  and  communica9on  •  Processing  pace:    How  fast  the  brain  works  •  Learning  and  memory  •  Abstract  thinking  •  Execu9ve  func9oning  •  Strengths  

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Strengths    

Crea9ve  Ar9s9c  Musical  Mechanical  Athle9c    

Hard-­‐working  Determined  Persistent    Willing    

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Secondary  behavioural  symptoms  

•  Easily  9red,  fa9gued  •  Avoidance  

•  Anxious  

•  Lonely,  isolated  

•  Shut  down;  flat  affect    

•  Fearful,  withdrawn  

•  Depressed  

•  Frustrated,  short  fuse,  angry        

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The  Fetal  Alcohol-­‐  Neurobehavioural  (FA-­‐NB)  

approach  

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(c)  NOFASARD  2013  

Malbin,  D  (2014)  Into  Ac9on  

FASCETS  PO  Box  69242,  Portland,  OR    97239  Dmalbin@fascets.org              www.fascets.org  

Malbin,  D.  (2002)  Trying  Differently    Rather  Than  Harder.  Tetrice  publica9ons.  

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(c)  NOFASARD  2013  

The  logic  model  •  Alcohol,  drugs,  other  teratogens  and  trauma  

kill  cells  and  cause  physical  changes  in  the  brain  

•  Physical  changes  affect  the  structure  and  func9on  of  the  brain  

•  Behaviors  are  usually  the  only  symptoms  

•  FA/NB  is  an  invisible  physical  disability  with  behavioral  symptoms  

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(c)  NOFASARD  2013  

The  conceptual  glue  

If:    FA/NB  =  brain-­‐based  physical  disability  with  behavioral  symptoms  

Then:  Recognize  and  provide  accommoda9ons,  same  as  for  any  other  physical  condi9on  

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Principles  of  FA/NB  1.  Can’t  rather  than  won’t  2.  Consider  developmental  age  rather  

than  chronological  age  –  shics  our  expecta9ons  

3.  Realis9c  expecta9ons  and  environmental  and  social  accommoda9ons/strategies  

(c)  NOFASARD  2013  

Assump9ons  and  comparison  

Neurotypical   FA-­‐NB  

Think  fast,  listen  fast   Process  slowly  

Predict,  plan  ahead   Difficulty  predic9ng  

Mul9-­‐task,  priori9se   One  thing  at  a  9me  

Learn,  remember,  apply  informa9on  

Memory  problems  

Inhibit  impulses   Impulsive    

Ignore  and  manage  sensory  input  

Easily  over-­‐s9mulated  

Problem  solve   Difficulty  problem  solving  

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Developing  &  implemen9ng  strategies/  accommoda9ons  for  community  case  management  &  working  in  custodial  seOngs  

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Case  study   -­‐  Max  !  17  years  old,  usually  lives  with  mother,  known  maternal  drinking  

!  Developmental  age  is  averaged  at  8,  no  FAS  ‘face’  

!  Early  school  leaver  -­‐  limited  literacy  and  numeracy  skills  

!  Alcohol  and  other  drug  use  issues/  financial  problems    !  Difficulty  sustaining  work  

!  Periods  of  deten9on  since  12  

!  Mul9ple  diagnoses  in  childhood  –  learning  disorder,  ADHD,  conduct  disorder  and  many  agencies  and  interven9ons  over  9me.  Withdrawn  services  due  to  client  ‘not  trying’  

!  Case  file  indicates  inamen9on,  high  support  need,  agrees  to  obliga9ons  (work,  training  etc)  but  does  not  follow  through,  confabulates  

!  Tries  hard  to  please  and  is  likeable  and  friendly  

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Behavioural  techniques  based  on  learning  theory  are  used  in  all  systems:  

! Paren9ng  ! Educa9on  !  Jus9ce  ! Mental  health  ! Addic9ons  treatment  ! Social  services  ! Others  

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Defini9on:  Secondary  characteris9cs  

 Secondary  defensive  behaviors  develop  over  9me  when  there  is  a  “poor  fit”  between  individual  and  environment    

 Defensive  behaviors  are  normal  reac9ons  to  pain  and  are  preventable            Adapted  from:      Ann  Streissguth,  1996  

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FA/NB  pathway  

(c)  NOFASD  2013  

The absence of understanding + unrealistic expectations + inappropriate interventions = poor ‘fit’ and complex needs

Physical  brain  

difference  

Primary  condi9ons  

Complex  needs  

Secondary behaviours

emerge over time and are

defensive

Labelling + behaviour

interventions

poor ‘fit’

Ter9ary  condi9ons  

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FA-­‐NB  is  not  the  “diagnosis  du  jour”  

Current  diagnoses  =  behavioural  symptoms  

FA/NB  =  Brain  difference  (dysfunc9on)  

Iden9fica9on  redefines  behaviors  

Redefines  problems    

Redefines  solu9ons  

Values  and  values  clashes  Primary characteristic

Values, expectations

Interpretation / Feelings

Intervention Secondary symptom

Accommodation: Build on strengths

Dysmaturity Act your age Being a baby, Lazy, not trying Frustrated

Punish Anxiety, anger Think younger

Confabulation Honesty Lying, manipulative, “At me” Fear, angry sad

Punish, ground Anger, denial Recognize brain dysfunction, alter communication

Memory problems

Remember “Should” know!! Angry frustrated Remove

privileges Anger, frustration

Accept need to reteach, based on learning strengths

Slow processing pace

Value speed – think fast

Not trying, withholding , on purpose Angry, frustrated

Speed up, yell, embarrass

Shut down, fear, avoidance, withdrawal

SLOW DOWN! Use fewer words

Difficulty generalizing, gets the piece, not the picture

Know and apply concepts in different settings

Breaking the rules, Should understand concepts in all settings Angry, frustrated

Consequence Confusion, anxiety, frustration anger

Show rather than tell, reteach in different settings

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Observe    to  Find  Pamerns:    Func9onal  neurobehavioral  assessment  

Are  behaviours  primary  or  secondary?  Resist  interpreta9on  

What  did  you  see?  

What  happened  just  before?  

Describe  the  seOng,  environment  

Were  there  other  factors?  E.g.  unexpected  change?  

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FASCETS  Neurobehavioural  screening  tool©  

1.  Developmental  level  of  func9oning:  Social  skills  and  adap9ve  behaviors  

2.  Sensory  systems,  sensory-­‐motor  integra9on  3.  Nutri9on  

4.  Language  and  communica9on  5.  Processing    pace  

6.  Learning  and  Memory    7.  Abstract  thinking  

8.  Execu9ve  func9oning  

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6.  Learning  and  Memory    0  1  2  3  4  5      Poor  short-­‐term  auditory  memory;  may  do  one  

step  of  three-­‐step  direc9ons  

0  1  2  3  4  5      Says  one  thing,  does  another,  e.g.,  “Talks  the  talk,  but  doesn’t  walk  the  walk”  

0  1  2  3  4  5      Inconsistent  performance:  “On”  and  “off”  days,  “A”  on  Monday,  “F”  on  Wednesday  

0  1  2  3  4  5      Needs  to  be  retaught  the  same  thing  many  9mes    

0  1  2  3  4  5      Learns  a  rule  in  one  seOng,  may  not  apply  it  in  a  different  place  

0  1  2  3  4  5      Has  trouble  remembering  and  learning  from  past  experiences  

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8.  Execu9ve  func9oning    0  1  2  3  4  5      Difficulty  organizing  and  planning  a  day  

0  1  2  3  4  5      Difficulty  geOng  started  or  finishing  mul9-­‐step  tasks  

0  1  2  3  4  5      SeOng  goals  and  planning  the  steps  to  achieve  them  is  hard  

0  1  2  3  4  5      Gets  “stuck,”  has  difficulty  stopping  doing  something  -­‐-­‐  “Can’t  let  go”  in  an  argument  

0  1  2  3  4  5      Has  trouble  transi9oning,  shicing  gears;  may  become  angry  when  interrupted      

0  1  2  3  4  5      Upset  by  unexpected  change  in  tasks,  schedule  or  rou9ne  

0  1  2  3  4  5      Upset  by  changes  in  environments,  e.g.,  desks  or  furniture  moved,  subs9tute  teacher  

0  1  2  3  4  5      Impulsive,  difficulty  inhibi9ng  responses  

0  1  2  3  4  5      Difficulty  making  links:  Hearing  into  doing,  seeing  into  wri9ng,  thinking  into  talking  

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Secondary  characteris9cs:      0  1  2  3  4  5    Easily  9red,  fa9gued;  may  show  as  overac9vity,  irritability,  and/or  tantrums    0  1  2  3  4  5    Anxious  

0  1  2  3  4  5    Lonely,  isolated  

0  1  2  3  4  5    Shut  down;  flat  affect    

0  1  2  3  4  5    Fearful,  withdrawn  

0  1  2  3  4  5    Depressed  

0  1  2  3  4  5    Frustrated,  short  fuse,  angry        

0  1  2  3  4  5    Gets  in  trouble  if  easily  manipulated  and  set  up  by  others  

0  1  2  3  4  5    Self-­‐harming  behaviors  

0  1  2  3  4  5    Avoidant,  runs  away  

0  1  2  3  4  5    Remarkable  sexual  ac9vity;  mul9ple  partners;  unplanned  or  teen  pregnancy  

0  1  2  3  4  5    Aggressive  

0  1  2  3  4  5    Destruc9ve  (not  due  to  curiosity  or  just  taking  things  apart)  

0  1  2  3  4  5    Disrup9ve  in  class  or  at  work,  secondary  to  anxiety  or  frustra9on  

0  1  2  3  4  5    Talks  back,  is  argumenta9ve,  secondary  to  cogni9ve  inflexibility    

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Ter9ary  characteris9cs  0  1  2  3  4  5    Delinquent;  criminal  involvement  

0  1  2  3  4  5    Trouble  at  home  0  1  2  3  4  5    Trouble  at  school  or  in  the  community  0  1  2  3  4  5    Social  services  involvement  

0  1  2  3  4  5    Legal  system  involvement  0  1  2  3  4  5    Alcohol  /  drug-­‐related  problems,  

addic9ons  

0  1  2  3  4  5    Other  problems  

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Uneven  development  adolescent  

Actual  age  of  person:                                          18  

Developmental  age-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐9  Strengths  (art,  sports)-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐24  Expressive  language-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐20  

Recep9ve  language-­‐-­‐-­‐-­‐8  Reading  -­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐14  Comprehension  -­‐-­‐-­‐-­‐-­‐-­‐7  

Poor  ‘fit’  =  problems    FA-­‐NB  Characteris5c   Strategy  –  expecta5on    

Visual  learner   Verbal  instruc9on  

Processes  informa9on  slower  

Fast  paced,  mul9ple  instruc9ons  

Needs  external  support   Work  independently  

Difficulty  organising   Organised  and  able  to  priori9se  

Concrete  thinker   Abstract  –  9me,  cost,  impact  on  others  

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Starter  strategies  for  accommoda9ons  

1.  Think  brain  and  reframe  percep9ons  2.  Observe  pamerns  of  behaviour/s  3.  Iden9fy,  build  on  strengths  4.  Write  the  case  plan  for  the  environment:    

modify  environments  for  a  good  “fit”  5.  Collaborate,  coordinate    

Applica9on:      Func9onal  Neurobehavioral  Assessment  

A  systema9c  approach  to  developing  person-­‐specific  accommoda9ons  in  all  seOngs  and  managing  the  complexity  of  FA-­‐NB  

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SeOng:  Custodial     Age:     18   Developmental  age:  9-­‐10  

1 Task or Expectation

2 Brain has to

3 Primary symptoms FA/NB

4 Devel. Age (est.)

5 Secondary behaviors

6 Strengths

7 Accommodations

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SeOng:  Jus9ce   Age:    15     Developmental  age:    12  

1 Task or Expectation

2 Brain has to

3 Primary symptoms FA/NB

4 Devel. Age

5 Secondary behaviors

6 Strengths

7 Accommodations

Understand rights

Understand abstract concepts

Difficulty with abstractions

12 Compliance Concrete, literal

Simplify.

Show up for court dates or appointments

Plan, manage time, filter out other issues that arise - priorise

Difficulty with executive functions, planning

14 Denial, defense, blame

Willing, relational

Utilize “external brain” to prevent problems

Comply with orders

Remember what needs to be done, generalize

Poor memory, difficulty generalizing

15 Breach , anger, avoidance, aggression

Determined, persistent

Reduce number of tasks, show rather than tell

Learn from mistakes

Store, retrieve, apply information, inhibit impulses

Difficulty, retrieving, applying information, impulsive

10 Re-offend Wants to please

Establish informed networks to prevent problems

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Addi9onal  starter  strategies  

1.  Stop  figh9ng  for  change.  Ask:    What  if?  2.  Think  younger  3.  Give  9me  4.  Recognize  strengths  5.  Slow  down  speech  –  use  less  words  6.  Be  direc9ve,  say  what  you  mean    7.  Use  visual  supports  –  hand  signs,  simple  drawings  

or  photographs  8.  Don’t  give  too  many  choices  9.  Re-­‐teach,  remind  on  a  regular  basis  

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Review  

1.  FA/NB  is  a  brain-­‐based  physical  disability  2.  Reframe  behaviors:  Neurobehavioral  Screen  

-­‐  primary,  secondary  and  ter9ary  symptoms  

3.  Applica9on:    Fit  and  accommoda9ons    Func9onal  neurobehavioral  assessment  

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Provincial  Outreach  Program  hmp://www.fasdoutreach.ca/elearning/modules-­‐guide/modules-­‐guide    •  Learning  about  FASD  (including  Kim  Barthel  –  Speaking  about  

the  Brain  and  Amachment)  

•  Planning  Instruc9on  for  schools  •  Crea9ng  Posi9ve  Behaviour  Climate  

•  Teaching  to  Strengths  and  Needs  Developing  individual  educa9on  programs  

•  Transi9oning  •  Assessment  networks  

(c)  NOFASARD  2013  

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References    !  MALBIN,  D  (2013)  Into  Ac9on:  A  Training  of  Trainers  in  a  

Neurobehavioural  Approach.  Portland,  Oregon  12-­‐15th  March  2013  

!  MALBIN,  D.  (2002)  Trying  Differently  Rather  Than  Harder,  Tetrice  

!  STREISSGUTH,  A.  (1997)  Fetal  Alcohol  Syndrome:  A  Guide  for  Families  and  CommuniAes.  Brookes:  USA  (Fich  Prin9ng  2003)  

!  STREISSGUTH,  A.P.,  &  KANTER,  J.,  (eds.)  (2002)  The  Challenge  of  Fetal  Alcohol  Syndrome:  Overcoming  Secondary  DisabiliAes.  University  of  Washington  Press:  Seamle  and  London  

(c)  NOFASARD  2013  

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Na9onal  Organisa9on  for  Fetal  Alcohol  Syndrome  Disorders  

postal:  PO  Box  448,  Wynyard  TAS  7321  telephone:  1300  306  238  email:  admin@nofasd.org.au  website: www.nofasd.org.au    

ABN  :  93  833  563  942  Patron:  Her  Excellency  Dame  Quen9n  Bryce  

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