Introducing  Perseveration.Most  of  you  who  are  reading  this  will  know  how  much  those  with  FASD  struggle  to  understand  their  environment  and  what  is  happening  to  them,  and  how  they  are  overwhelmed  by  situations  that  others  can  cope  with  routinely.We  need  to  ask  ourselves-­‐  how  can  a  person  survive  when  he  or  she  is  repeatedly  faced  with  such  situations  that  are  impossible  for  them  to  reconcile?

Bill  was  22  when  I  First  saw  him.  Gaunt    with  metal  hanging  from  his  nose  and  ears.  He  was  dressed  completely  in  black.  At  that  time  I  was  only  just  starting  to  recognize  FASD  consequently  I  treated  him  in  the  traditional  way  for  his  depression  and  drug  addiction.With  his  history  and  observing  him  over  a  period  of  nine  months  however,  it  became  apparent  that  FASD  was  the  likely  cause  of  his  disabilities  and  chaotic  life.  FAS  had  been  mentioned  in  the  past  but  not  pursued.He  had  experienced  the  secondary  disabilities  of  disrupted  schooling,  drug  and  alcohol  problems,  inability  to  live  independently,  inability  to  maintain  employment  and  incarceration.  In  addition  he  had  been  treated  for  ADD  and  depression.It  was  apparent  that  he  had  sensory,  cognitive  and  information  processing  disabilities  although,  as  usual,  a  psychological  assessment  was  not  available.Eventually,  after  some  years,  the  diagnosis  was  conFirmed.

In  listening  to  those  with  FASD  it  is  important  to  try  and  not  interpret  what  they  say  from  the  view  of  our  own  values.  Rather  our  interpretation  should  be  made  in  the  light  of  the  individual’s  disabilities.

Bill’s  mother  accompanied  him  on  his  third  visit  and  a  more  detailed  history  was  obtained.  She  was  small  and  slight  besides  Bill  ,  very  concerned  but  weary  from  the  chaos  of  the  preceding  eighteen  

years.Bill  was  adopted  at  age  four  after  being  removed  from  his  parents  at  the  age  of    two..  The  reasons  for  his  removal  were  neglect  and  the  alcohol  abuse  by  his  birth  parents.  As  usual,  the  CAS  records  did  not  indicate  whether  alcohol  had  been  consumed  during  the  pregnancy.His  parents  had  supported  him  but  at  this  time,  with    welfare,  he  was  managing  on  his  own  living  in  an  apartment  in  a  near  by  city,  but  exposed  to  the  drugs  he  wanted  to  quit.Issues  that  were  actually  commented  on  by  Bill  and  supported  the  diagnosis  of  FASDwere  -­‐-­‐hygiene-­‐  “unless  directed  continuously”-­‐  self  cutting,  seen  as  attention  seeking  by  others  but  correctly  described  by  Bill  as  “helping  him  be  aware  of  his  body”.Cutting  provides  comfort  for  those  with  FASD,  especially  in  times  of  stress,  that  others  obtain  from  more  normal  sensory  stimulation.-­‐  maintaining  employment  Bill  stated  that  “he  could  not  maintain  employment  because  he  would  forget  and  needed  supervision.”  In  spite  of  what  society  may  think,  those  with  FASD  want  to  work.-­‐He  indicated  “that  he  never  learned  from  his  mistakes.”  This  was  his  repetition  of  what  he  had  been  told-­‐  as  we  shall  see  it  is  a  matter  of  how  we  interpret  the  word  “learn”

-­‐sleep  -­‐  “can’t  get  to  sleep,  my  mind  is  like  a  computer  rebooting”-­‐  anger  and  depression-­‐”can’t  understand  it,  don’t  like  it-­‐  happens  when  I  focus  on  negative  thoughts”These  last  two  comments  by  Bill  were  to  assume  great  signiFicance  as  I  journeyed  along  the  path  of  understanding.

It  was  their  eighteenth  visit.  Bill  was  visibly  angry.  His  mother  looked  tired,  and  resigned  to  Bill’s  explosive  outburst.  -­‐“It’s  always  the  same.  She  never  supports  me.  She’s    always  controlling,  wants’  me  to  depend  on  her.  She  is  always  negative  about  what  I  do.”

Those  with  FASD  move  from  the  speciFic  to  the  general  in  this  way,  to  the  distress  of  others.  Yet,  at  other  times  they  will  not  be  able  to  apply  a  general  rule  from  their  speciFic  behaviour.

So  I  asked  Bill  to  explain  the  problem.  He  had  obtained  a  job  but  his  mother  was  negative  about  it  and  not  encouraging  him.It  sounded  great  to  me,  so  why  was  his  mother  being  negative  about  it?“We  have  been  through  this  many  times.  Bill  has  not  told  Welfare  that  he  has  a  job.  If  Welfare  or  his  employer  Find  out  he  will  be  Fired.  When  that  happens  we  will  have  to  start  providing  him  with  money  for  his  rent  again.”I  pointed  out  to  Bill  that  what  his  mother  was  saying  was  correct,  and  he  agreed  but  immediately  said.-­‐  “  But  I  don’t  want  to  depend  on  her.  She  does  not  understand.  I  don’t  want  to  keep  taking  her  money.  That’s  why  I  need  the  job”.He  said  it  with  such  emphasis  that  it  resonated  in  the  back  of  my  mind,  especially  as  it  was  not  logical  to  me  with  my  manner  of  thinking.  I  realized  that  Bill’s  emphatic  focus  was  related  in  some  way  to  his  not  acting  on  the  point  his  mother  had  made.  Yet  I  did  not  understand.

Two  weeks  later  they  returned.  Bill’s  demeanor  was  so  different.  His  head  was  down,  his  voice  quiet.  His  mother  looked  even  more  withdrawn  and  resigned.-­‐  “  Everything  turned  out  as  I  said.  His  employer  found  out  that  he  was  on  Welfare  and  Fired  him.  Now  we  are  paying  his  rent  again  and  supporting  him”.I  turned  to  Bill  and  gently  pointed  out  that  we  had  discussed  the  consequences  of  not  disclosing  that  he  was  on  Welfare  on  the  previous  visit.  -­‐“Yes  I  know  but  I  don’t  want  to  depend  on  her”  This  time  it  came  out  not  with  anger  but  like  the  echo  of  a  deep  conviction.  It  stayed  with  me,  a  lingering  phrase  that  I  knew  was  

important,  but  why?It  kept  coming  back  to  me,  each  time  a  little  clearer  but  so  different  to  my  own  experience.What  Bill  wanted  was  appropriate  so  why  would  he  jeopardize  his  goal  by  not  declaring  he  was  on  welfare?  Many  reasons  came  to  my  mind  but  none  of  them  were  mentioned  by  Bill.  Was  it  possible  that  he  was  so  stuck  on  his  goal  that  he  could  not  deviate  from  his  plan,  i.e.  working  at  the  job,  by  considering  and  taking  into  account  what  his  mother  had  said?  Possibly,  but  even  when  he  could  acknowledge  later  the  truth  of  what  she  had  said?It  is  at  this  point  that  it  was  necessary  to  remove  myself  from  my  mind-­‐set  and  accept  the  facts  as  Bill  had  presented  them.If  Bill  had  not  been  able  to  take  what  he  later  acknowledged  to  be  true  and  modify  his  intent  and  behavior  then  there  could  only  be  one  explanation.  He  was  so  focused  on  his  need  to  be  independent  of  his  mother  that  he  could  not  take  the  knowledge  that  she  offered  him  into  consideration  at  that  time.  Later  he  could  acknowledge  it,  when  he  was  no  longer  so  focused  on  the  job.Could  I  relate  to  this  in  my  own  experience?  Yes  there  were  times  when  I  was  so  focused  that  I  would  miss  input  from  others  etc.  Could  it  be  possible  that  this  was  always  the  case  for  Bill?With  this  question  in  mind  I  started  to  look  at  those  with  FASD  with  a  different  perspective.  It  started  to  explain  so  much.Eventually  I  came  up  with  a  story  to  use  in  presentations  on  FASD.  I  called  it  the  Hot  Dog  Story-­‐  a  composite  of  all  the  examples  told  to  me  by  those  with  FASD.

A  family  has  a  teenage  son.  He  has  caused  them  a  lot  of  grief  -­‐  skipping  school,  staying  out  late,  running  with  the  wrong  crowd,  petty  theft,  lying  and  so  on.  His  parents  have  not  given  up  on  him  but  they  are  increasingly  frustrated  and  angry.One  day  the  boy  asks  if  he  can  go  down  town  to  a  show.  His  father  gives  him  the  money  for  the  show  and  for  his  fare  to  and  from  downtown.  The  father  says-­‐

-­‐“That’s  all  there  is  and  come  straight  home”The  boy  replies-­‐-­‐”I  know,  you  don’t  have  to  keep  telling  me.  I’m  not  stupid”Later,  after  they  have  gone  to  bed,  the  telephone  rings.The  father  answers  the  telephone.  It  is  their  son.-­‐”What  do  you  want?”The  boy  replies.-­‐“I  need  a  ride  home.”Father.-­‐”Why  do  you  need  a  ride  home?”Boy.-­‐“I  have  no  money”-­‐Father.-­‐“What  do  you  mean  you  have  no  money?  What  have  you  done  with  it?”

Boy-­‐“  I  bought  a  hot  dog.”His  father  goes  berserk.-­‐“You  bought  a  hot  dog  and  now  you  expect  me  to  drive  down  and  bring  you  home.  You  are  selFish...”  He  goes  on  and  on.

Never  the  less  he  gets  dressed  and  drives  down  town.  He  does  so  because  from  experience  he  knows  his  son  will  likely  get  into  trouble  if  he  is  left  to  make  his  own  way  home.The  next  day  the  father  asks  his  son.-­‐”Why  did  you  do  that?”The  boy  replies.-­‐“I  don’t  know”

The  explanation  is  -­‐  when  the  boy  came  out  of  the  show  he  was  hungry.  He  sees  the  hot  dog  stand.  He  sees  and  smells  the  hot  dogs.At  that  moment,  super  focused  on  the  hot  dog,  he  was  not  able  to  take  the  knowledge  that  he  had  and  apply  it  to  change  his  intent.  So  he  spends  his  money  on  the  hot  dog.  The  next  day  when  asked  why  he  did  this  he  does  not  know.  After  all  he  is  not  stupid  and  he  knew  

before  he  went  to  the  show,  and  after  returning,  that  he  only  had  enough  money  for  his  fare  home.  So  his  answer  is.-­‐”I  don’t  know”.  

At  this  point  I  had  taken  a  big  stride  to  understanding  FASD.Those  with  FASD,  when  they  are  perseverating  on  something,  are  not  able  to  take  the  knowledge  that  they  have  and  apply  it  in  the  moment  in  anticipation  of  what  might  or  might  not  happen  in  the  future.  They  forget  to  remember.  They  are  prisoners  of  the  moment.Surely  this  is  the  only  way  they  can  deal  with  situations  that    are  impossible  for  them  to  reconcile.

To  appreciate  the  perseveration  of  those  with  FASD  think  of  a  moment  when  you  were  brieFly  not  able  to  think  of  anything  but  the  topic  of  the  moment.  It  could  be  a  moment  of  danger  and  fear,  of  intense  concentration  as  in  an  examination  or  of  great  joy  as  at  the  birth  of  a  daughter  or  son.  Such  moments  would  be  infrequent.For  those  with  FASD  they  are  the  norm.

Perseveration  appears  to  be  universal  for  those  with  FASD.  This  does  not  mean  that  all  those  who  demonstrate  perseveration  have  FASD.In  the  non  FASD  world  perseverating  behavior  is  seen  as  both  good  and  bad.  It  occurs  in  combination  with  the  sensory,  cognitive  and  information  disabilities  of  FASD.

One  important  connection  is  its  role  in  ADHD  which  is  the  most  common    secondary  diagnosis  for  children  with  FASD.  Children  diagnosed  with  ADHD  are  prescribed  medications  such  as  Ritalin  that  increase  focusing  and  attention.How  will  that  inFluence  perseveration  in  children  who  have  FASD?We  can  expect  it  will  increase  the  perseveration  and  usually  this  is  the  case  in  my  experience.  I  say  “usually”  because  there  are  always  exceptions  to  the  rule  with  FASD.  It  follows  that  such  medications  can  be  expected  to  have  both  

positive  and  negative  results  depending  on  what  the  child  is  perseverating  on.    

Some  of  those  with  FASD  perseverate  on  suicide.  There  is  a  signiFicant  risk  of  suicide  and  suicide  attempts.The  role  of  Ritalin  type  medications  in  these  cases  has  not  been  explored,  as  far  as  I  know.  All  children  with  FASD  should  be  carefully  monitored  for  such  thoughts  before  prescribing  Ritalin  etc.    Close  monitoring  should  be  continued  once  the  medications  are  prescribed.  So  often  this  is  not  done.  We  do  know  that  there  is  a  connection  between  ADHD,  Ritalin  and  suicide.  The  problem  is  that  those  who  diagnose  ADHD  usually  ignore  the  role  of  FASD  and  its  consequences.We  also  know  that  sudden  death  on  Ritalin  etc  is  a  risk  for  those  with  ADHD.Cardiac  abnormalities  occur  in  some  cases  of  FASD.  Such  cases  could  be  at  increased  risk  if  prescribed  these  medications  for    ADHD.What  this  means  is  that  FASD  should  always  be  excluded  before  diagnosing  and  treating  ADHD  and  children  diagnosed  with  FASD  should  be  assessed  for  cardiac  abnormalities.  This  is  rarely  done.

 Positive  Perseveration-­‐I  was  visiting  an  inner  city  drop  in  centre  for  street  children  and  youths.Helping  out  was  a  young  man  who  told  me  he  had  FAS.  He  had  left  a  neglectful  and  abusive  home  when  a  child,  to  live  on  the  streets.  He  had  been  involved  with  the  sex  trade,  drugs,  violence  and  most  other  criminal  activities  as  he  was  growing  up.Eventually  he  started  to  realize  that  those  he  associated  with  either  died  or  ended  up  in  jail.  At  the  same  time  he  had  found  the  drop  in  center;  a  place  were  he  could  get  a  hot  meal  and  see  that  there  were  other  ways  of  surviving.He  told  me  that  he  realized  if  he  was  to  avoid  the  fate  of  his  friends  

he  would  have  to  completely  avoid  them,  the  places  they  frequented  and  the  drugs  they  used.This  he  achieved  on  his  own,  although  the  fact  that  he  had  the  drop  in  center  and  the  new  friends  it  provided  was  of  great  help.However,  as  I  said  to  him,  those  with  FASD  are  not  supposed  to  be  able  to  learn  from  experience  in  this  way.  That  was  the  point  I  was  at  on  my  journey  of  understanding.

After  exploring  this  with  him  it  became  apparent  he  was  only  able  to  achieve  this  by  perseverating  on  the  consequences  of  his  previous  life  style.  “I  think  about  it  all  the  time”-­‐  he  said.What  an  effort  and,  although  so  positive,  how  much  it  must  have  limited  his  ability  to  consider  his  other  everyday  needs.  I  only  met  him  the  one  time.  I  hope  he  was  able  to  continue  on  his  path.  In  my  subsequent  experience  I  realized  that  ongoing  support  is  required  to  enable  those  with  FASD  to  continue  perseverating  to  obtain  such  positive  results.

We  look  for,  and  see,  what  we  know.  Once  I  understood  positive  perseveration  I  found  other  examples.  The  focus  of  positive  perseveration  mostly  relates  to  family  relationships  and  keeping  out  of  jail.B..    was  in  his  early  thirties.  He  was  divorced  but  was  actively  involved  in  the  daily  care  of  his  two  children.    As  a  young  man  he  had  a  number  of  convictions  for  theft  and  had  spent  time  in  jail.  His  time  in  jail  had  been  a  bad  experience  for  him.I  asked  him  if  he  ever  thought  of  stealing.  He  replied  “often,  but  I  wouldn’t  do  it”“Why  “  I  asked.“If  I  stole  again  I  would  only  end  up  in  jail  and  wouldn’t  see  my  kids,  and  I  never  want  to  go  back  there  anyway”So  I  followed  with  the  question.  “How  much  do  you  think  that  if  you  were  to  steal  something  you  would  go  to  jail  and  not  be  able  to  see  

your  children?“All  the  time”  was  the  answer;  his  very  words.  This  was  an  answer  that  I  was  to  hear  again  and  again.Up  until  I  last  saw  him  he  was  continuing  his  involvement  with  his  children.  He  had  the  support  of  his  family,  which  I  came  to  realize  was  so  necessary.

Sadly  such  positive  perseveration  is  usually  too  difFicult  to  maintain  when  support  is  lost.F..  had  a  similar  story  but  more  severe  than  Bs’He  had  been  through  all  the  secondary  disabilities  of  FASD.  When  he  First  came  to  see  me  he  was  married  with  a  young  child  and  had  a  steady  job.  He  was  not  drinking  or  using  drugs.He  had  been  able  to  change  his  life  around  by  perseverating  on  the  fact  that  any  return  to  his  previous  life  style  would  result  in  the  breakup  of  his  marriage  and  the  loss  of  his  child.  This  was  a  huge  and  continuous  effort  on  his  part.No  doubt  this  effort  itself,  together  with  his  other  disabilities,  made  life  extremely  difFicult  for  his  wife.  She  eventually  left  with  their  child.  Although  she  was  supportive  as  much  as  she  could  be  under  the  circumstances  he  started  to  drink  again  to  deal  with  the  resulting  chaos  in  his  mind.  Unlike  B..    he  did  not  have  other  family  members  to  support  him.

It  is  instructive  to  look  at  these  two  examples  of  positive  perseveration  from  society’s  usual  perspective.In  both  cases  the  great  and  continuous  effort  required  would  not  be  appreciated.In  the  First  case  B..  would  be  seen  as  someone  who  had  learned  his  lesson  and  made  up  for  his  past  delinquencies.In  the  second  case  F..  would  be  seen  as  someone  who  did  not  appreciate  what  he  had,  was  selFish  and  had  put  his  own  needs  before  those  of  his  wife  and  child.

Temporary  positive  perseveration-­‐A  year  or  so  later  I  had  a  referral  that  jolted  me  forward.E..  was  a  teenager  referred  by  a  psychiatrist.  This  was  unusual  since  FASD  is  rarely  considered  in  Psychiatry.She  was  a  resident  of  a  youth  detentions  centre  and  had  been  referred  for  the  possible  diagnosis  of  FASD.Both  her  parents  had  been  alcohol  abusers.  She  had  a  long  history  of  violence.  Finally  she  had  been  detained  for  treatment  of  her  violent  behavior.She  had  the  history  of  secondary  disabilities,  interrupted  schooling,  drug  and  alcohol  abuse  and  incarceration.She  has  shackles  on  which  her  worker  would  not  remove.  At  First  E..  refused  to  speak  to  me  so  I  asked  the  worker  about  E..s’  background.E..  had  been  incarcerated  because  of  her  repeated  violence  to  others,  usually  when  under  the  inFluence  of  alcohol.“She  is  a  model  client”  said  the  worker.  “She  has  had  only  one  violent  episode.  That  was  when  she  First  came.  She  is  cooperative  and  is  attending  school.  We  are  so  proud  of  her”.Eventually  E..  became  engaged  in  our  conversation.I  asked  about  the  violent  incident.“She  pissed  me  off  so  I  smashed  her  in  the  face”.“So  what  happened  then?”  I  asked.  “They  left  me  in  a  black  room.  There  were  no  lights  or  windows,  no  one  to  talk  to.  There  was  nothing  to  do.  I  hated  it.”“Have  you  thought  about  hitting  any  one  since  then?  I  asked.“Lots  of  times”  she  answered.“Oh  please,  don’t  listen  to  her.  She  is  not  like  that”  the  worker  said,  obviously  upset.“If  you  have  thought  about  hitting  people  lots  of  times  why  haven’t  you  done  so?  I  asked.“If  I  did  that  they  would  put  me  back  in  the  black  room.  I  don’t  want  that”  she  replied.The  next  question  was  “how  much  do  you  think  that  if  you  hit  someone  you  will  be  put  back  in  the  black  room?.

“  All  the  time”  was  her  answerI  do  not  know  what  happened  to  E..  after  this  visit.  She  never  returned.My  report  stated  that  she  likely  had  FASD  but  this  would  have  to  be  conFirmed  with  psychological  testing  according  to  our  Canadian  Guidelines  for  the  diagnosis  of  FASD.I  would  like  to  believe  that  after  her  discharge  she  would  have  returned  home  reformed  and  able  to  follow  a  happier  and  fulFilling  life.  I  think  it  more  likely  however  that  once  she  returned  home  her  perseveration  on  the  black  room  would  cease  and  the  next  time  she  appeared  in  front  of  a  judge  on  charges  of  assault  he  would  say  ”  young  lady  you  have  shown  that  when  you  want  to  you  can  improve  your  behaviour.  Obviously  you  have  not  learned  your  lesson  yet”  Then  he  would  incarcerate  her  for  a  longer  period  and  the  cycle  would  be  repeated.I  can  understand  that  some  would  criticize  me  for  including  the  story  of  E..  in  this  book  since  no  actual  diagnosis  of  FASD  was  made,  as  far  as  I  know.  However  her  history  was  supportive  of  the  diagnosis  and  more  importantly  I  was  to  Find  many  other  examples  of  temporary  positive  perseveration  once  I  started  to  look.

C..  was  sixteen.  He  had  signiFicant  cognitive  disabilities  but  had  not  had  psychological  testing  or  a  school  individual  education  plan  [  I.E.P.  ]  when  I  First  saw  him.  This  had  resulted  in  loss  of  motivation  and  interest  in  schooling,  which  he  skipped.With  a  deterioration  in  his  behavior,  seen  as  oppositional  and  deFiant,  his  mother  sought  help.  By  this  time  we  had  made  the  diagnosis  of  FASD  [  ARND  ]  but  it  had  made  no  signiFicant  impact  on  his  schooling.  This  was  because  of  his  attitude  due  to  the  late  age  of  diagnosis,  and  the  inability  of  the  teachers  to  adapt  to  his  needs.C…  was  placed  in  a  residential  group  home  with  the  aim  of  correcting  his  antisocial  and  disruptive  behavior.He  continued  to  behave  in  the  same  way  refusing  to  go  to  school  etc.    Loss  of  privileges  etc  had  no  affect.

In  spite  of  all  the  problems  at  home  he  missed  his  family  very  much.I  suggested  that  his  mother  explain  to  him  that  he  needed  to  think  continuously  that  if  he  did  exactly  what  he  was  told  he  would  be  able  to  return  home.  Fortunately  he  was  able  to  do  this.  It  worked  dramatically  and  he  was  home  within  a  few  weeks.The  group  home  was  of  the  opinion  that  their  therapy  had  changed  him.In  fact  after  returning  home  he  reverted  to  his  previous  behavior.  The  situation  did  improve  somewhat  when  the  school  was  Finally  persuaded  to  address  his  learning  disabilities.

A  more  dramatic  example  was  A….  He  was  23  years  old  when  I  First  saw  him.  A…  had  been  adopted  at  birth.    The  diagnosis  of  FAS  had  been  mentioned  once  in  a  report  when  he  was  14  years  old  but  had  not  been  pursued.At  the  time  of  his  First  visit  he  was  living  in  a  youth  hostel.  A  worker  from  the  hostel  had  brought  him  regarding  the  possible  diagnosis  of  FASD.The  diagnosis  was  eventually  made.  His  family  were  able  to  provide  me  with  all  his  records.He  had  cognitive,  information  processing  and  memory  disabilities.  At  an  early  age  he  had  demonstrated  the  secondary  disabilities  of  disrupted  schooling,  inappropriate  sexual  behavior,  trouble  with  the  law,  incarceration.  These  were  followed  later,  as  an  adult,  with  inability  to  live  independently  and  maintain  employment.He  had  been  managed  or  treated  by  twelve  agencies  /  organizations  including  two  psychological  assessments  and  two  psychiatric  assessments  prior  to  me  seeing  him.Previous  diagnoses  were  ADHD,  Oppositional  DeFiant  Disorder,  Transvestitic    Fetishism  with  Gender  Dysphoria  and  Learning  Disabilities.

On  one  visit  I  said  to  A…  ,  pointing  to  his  thick  chart.

“  All  these  treatments,  places  you  stayed  in,  and  here  you  are  seeing  me  for  similar  problems.”“Yes”,  he  said  cheerfully.  Not  much  helped.  “I  did  the  best  at  -­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐“.  He  referred  to  a  well  known  treatment  center  for  children.“What  do  you  mean”?  I  asked.“Well  I  caused  problems  for  a  while  and  then  they  put  me  in  the  Bubble”“What  was  that?“It  was  a  dark  room  with  no  lights,  nothing  to  do  and  no  one  to  talk  to.”It  had  obviously  been  a  bad  experience  for  him.“After  that  I  did  what  they  told  me  to  do.”“How  much  did  you  think  that  if  you  did  not  do  what  you  were  told  you  could  end  up  back  in  the  Bubble”  I  asked.“All  the  time”  was  his  reply.  His  exact  words.No  doubt  the  treatment  center  considered  A…  a  success.  There  was  no  indication  in  the  Files  from  the  center  of  any  follow  up,  and  no  mention  of  the  “Bubble”

What  is  the  primary  purpose  of  our  brain?  From  the  simple  nervous  system  of  the  worm  to  the  complex  human,  the  brain  receives  information  from  the  environment.  It  then  provides  the  means  for  the  recipient  to  respond  in  a  way  that  is  conducive  to  the  survival  and  propagation  of  its  DNA.Because  the  behaviour  of  those  with  FASD  is  so  self  harmful  and  counterproductive  we  assume  that  their  brain  is  not  following  this  primary  and  fundamental  path.This  assumption  is  a  serious  impediment  to  our  understanding  of  FASD.In  fact  those  exposed  to  prenatal  alcohol  work  hard  to  interpret  their  environment.  The  greater  the  developmental  disabilities  of  their  brain  the  harder  they  work,  with  the  means  they  have.  They  are,  as  we  all  are,  continuously  attempting  to  make  sense  of  what  is  

happening  to  them.  We  have  to  interpret  their  behavior  and  ideas  in  this  context.  We  will  never  make  progress  without  understanding  this  principle.The  fact  that  the  results  of  their  efforts  to  understand,  with  consequent  inappropriate  behavior,  are  in  conFlict  with  our  more  accurate  assessment  of  reality  must  not  allow  us  to  dismiss  what  those  with  FASD  have  to  say.We  need  to  listen,  listen,  listen…..

Now  we  can  understand  why  making  the  diagnosis  in  early  childhood,  and  being  exposed  to  a  positive  environment  can  reduce  the  incidence  of  secondary  disabilities.  Nevertheless,  even  with  such  ideal  FASD  circumstances  it  is  a  continuous  struggle  for  the  individual  to  navigate  the  intricacies  of  everyday  life,  striving  to  live  the  values  they  grew  up  with.

Therapeutic  Perseveration-­‐Being  bored-­‐  Khaos  [  Greek-­‐  bottomless,  void,  primeval  chaos,  abode  of  evil  spirits,  hell  ]

We  must  not  assume  that  when  a  person  with  FASD  uses  a  word  that  it  has  the  same  meaning  as  it  has  for  us.  They  will  repeat  what  they  have  been  told  over  the  years,  including  our  descriptions  and  interpretations  of  their  behavior.  

Since  they  have  been  told  they  are  bored  when  they  are  in  a  state  of  Khaos,  inevitably  they  will  come  to  believe  the  two  are  the  same.This  process  has  signiFicance  in  all  areas  of  interaction,  none  no  more  important  or  tragic  than  our  legal  system.  So,  for  example,  a  person  with  FASD  may  describe  their  desperate  attempt  to  Find  relief  as  “seeking  attention”  because  that  is  what  they  have  been  told  so  many  times.

Only  two  years  before  retiring,  having  lived  with  FASD  for  34  years  and  seeing  those  with  FASD  in  my  ofFices  daily  for  10  years  I  made  a  huge  leap  forward  in  my  understanding  of  FASD.  It  came  once  more  from  listening  to  words  spoken  and  not  interpreting  them  from  my  self  -­‐  perspective;  to  have  taken  so  long!I  could  not  count  the  number  of  times  “being  bored”  was  complained  of  by  those  with  FASD.  I  assumed  that  the  meaning  of  “bored”  was  the  same  for  them  as  for  me.  For  me  it  merely  meant  having  nothing  to  do  and  quickly  moving  on.  It  was  never  an  issue  and  not  unpleasant.    Now,  looking  back,  I  wonder  how  I  could  have  been  so  foolish.

N..  was  19  years  old  when  she  First  came  to  see  me.  She  had  been  diagnosed  at  the  age  of  Five  and  had  been  adopted  and  raised  in  an  ideal  rural  setting  with  an  understanding  family.The  event  that  caused  them  to  see  me  was  an  unexpected  and  out  of  character  disappearance  for  a  weekend.  N.  had  been  persuaded  to  visit  a  male,  contacted  on  the  internet.  Fortunately  she  was  quickly  located  and  returned  home  by  the  police.N.  was    still  at    high  school.  She  had  an  I.E.P.  but  was  many  credits  behind  as  she  had  signiFicant  disabilities,  in  great  contrast  to  her  mature,  attractive  appearance.Expectations  were  explored  and  adjusted.    The  daily  manifestations  of  N’s  disabilities  were  reviewed  in  the  context  of  “stealing’,  “lying”  and  inappropriate  communications  over  the  internet.The  family  understood  that  N  would  always  require  care  and  supervision.  This  was  a  concept  that  N.  struggled  with,  a  frequent  scenario  with  FASD.

It  was  on  their  twelfth  visit.  N’s  mother  said    “as  usual,  she  spends  all  her  time  playing  video  

games”Immediately  N  said,  “  I  do  that  when  I’m  bored”.

I  think  it  was  her  attitude,  not  stated  –  of  course,  what  else  would  I  do?  What’s  your  problem.-­‐  that  indicated  an  underlying  assumption  on  her  part  that  we  understood  the  reason  why  she  did  this  when  bored.  I  realized,  for  the  First  time,  that  actually  I  did  not  understand  why  she  played  video  games  continuously  when  bored.So  I  asked  her  “what  is  being  bored  like?”Her  answer  was  a  revelation.

‘When  I’m  bored  I  have  lots  of  thoughts  in  my  head.  It  is  uncomfortable.  I  don’t  like  it.  So  I  play  video  games  and  it  all  goes  away”  She  was  never  able  to  tell  me  what  the  thoughts  were.  She  did  make  it  clear  that  she  had  no  control  over  them  and  the  process  was  not  nice.  They  were  associated  with  uncontrolled  changes  in  feeling  good  /  bad.

So  I  started  to  ask.  In  doing  so  it  was  important  not  to  ask  leading  questions,  to  be  unambiguous  and  to  listen.Here  are  some  examples  of  being  “bored”  [Khaos].  In  some  cases  they  were  from  people  who  I  had  been  seeing  for  years,  and  I  had  had  no  idea  of  their  true  state  of  mind,  i.e.  Khaos

“  -­‐  a  thousand  tvs  all  playing  at  the  same  time”“  -­‐  hundreds  of  radios  playing  at  the  same  time”“  –  beehive  full  of  bees  buzzing  around  in  my  head”

Since  they  have  always  been  told  that  they  are  bored  when  in  fact  they  are  in  a  state  of  Khaos,  inevitably  they  will  come  to  believe  the  two  are  the  same.They  describe  different  ways  of  controlling  Khaos,  but  they  all  have  

one  thing  in  common,  it  is  a  process  of  perseveration.What  those  with  FASD  perseverate  on  for  relief  of  their  chaotic  [bored]  mind  is  extremely  variable.  It  is  determined  by  the  environment  that  they  grew  up  in,  with  its  values  and  behaviors,  and  positive  and  negative  experiences.  

[We  all  have  core  values  and  behaviors  that  are  laid  down  in  the  First  few  years  of  life.    In  the  case  of  FASD  those  core  values  and  behaviors  are  essentially  set  in  stone.  If  they  are  negative  those  with  FASD  are  more  prone  to  secondary  disabilities.]

Understandably,  the  cognitive,  information  and  memory  deFicits  of  the  individual  will  also  determine  what  they  do  for  relief.  In  some  cases  they  may  read,  play  sports  or  music;  all  seen  as  very  positive,  if  not  obsessive.For  those  with  more  serious  neurological  disabilities  simple  forms  of  relief  are  used;  many  parents  are  familiar  with  the  intense  texting  and  video  game  playing  of  their  children,  and  how  aggressive  or  violent  they  are  when  this  activity  is  taken  from  them.  We  need  to  ask  ourselves  how  we  would  react  if  we  suffered  from  violent  migraines  and  had  our  pain  medications  taken  from  us  with  no  other  means  of  relief,  we  might  then  have  some  understanding  of  the  role  perseveration  plays  in  the  relief  of  Khaos.  

FASD  often  includes  serious  disturbances  of  sensation.They  may  have  very  high  or  very  low  thresholds  of  sensation.One  or  more  of  the  Five  senses  can  be  affected.  Depending  on  the  situation  these  disabilities  may  be  comfortable  or  uncomfortable  for  the  person  with  FASD.  I  will  discuss  this  later  in  more  detail.In  terms  of  Therapeutic  Perseveration  one  of  the  most  dramatic  and  paradoxical  examples  is  self  mutilation.  Cutting  is  in  fact  a  process  of  therapeutic  perseveration  for  the  relief  of  Khaos.  For  those  who  have  not  made  the  paradigm  shift  of  understanding  

the  use  of  the  word  “therapeutic”  may  seem  inappropriate,  if  not  fallacious.    However  since  self-­‐cutting  brings  relief  of  Khaos    it  is  to  that  extent  therapeutic.  Of  course  we  should  help  those  who  use  self  –  mutilation  Find  other  more  desirable  means  to  relieve  their  Khaos.

I  have  never  met  a  person  with  FASD  who  liked  to  show  off  their  scars  from  self-­‐mutilation.  On  the  contrary  they  prefer  to  hide  them;  in  contrast  to  someone  who  is  seeking  attentionJ__  was  32.  He  lived  alone  having  had  a  number  of  failed  relationships.  He  was  very  intelligent  but  led  a  chaotic  life,  always  in  conFlict.  He  came  from  a  middle  class  family  and  dressed  accordingly  with  a  suit  and  tie,  no  matter  the  weather.  I  commented  on  this  one  particularly  hot  August  day.“  I  always  wear  a  tie  and  long  sleeve  shirts  he  said,  and  never  wear  shorts.”“Why  is  that  I  asked”  without  giving  it  much  thought.  “Because  of  all  the  scars”  he  answered.  So  obvious  once  he  said  it.  We  had  discussed  his  cutting  in  the  past.  This  was  the  First  time  he  showed  me;    a  brief  exposure  that  showed  a  keliod  scar.Attention  seeking  and  anger  directed  at  self  are  two  of  a  number  of  explanations  given  for  this  behavior  by  those  who  do  not  recognize  or  understand  FASD,  but  in  fact  it  is  one  of  many  ways  they  seek  relief  from  their  Khaos,  and  certainly  it  is  a  process  of  perseveration,  enhanced  by  a  tactile  disability.

Criminal  activity  can  certainly  be  a  way  of  relieving  Khaos.Part  of  this  is  the  “excitement”  of  criminal  activity.  One  adult  would  repeatedly  break  and  enter.  He  told  the  law  that  he  did  it  whenever  he  was  bored.  One  doesn’t  need  a  great  imagination  to  see  how  that  was  interpreted;  gratifying  his  pleasure  centers.  In  fact,  in  moments  of  Khaos,  his  B  an  Es  were  a  process  of  relief.

I  have  many  times  asked    “  If  you  were  placed  in  a  dark  room,  no  

windows,  no  sound,  no  one  to  talk  to,  nothing  to  listen  to  or  play  with,  nothing  to  do-­‐  what  would  happen?”The  answers  are  always  similar.  “  I  would  go  mad  or  I  would  kill  myself.Yet  solitary  conFinement  is  still  practiced  in  our  prison  systems,  and  we  know  many  inmates  have  FASD.

***************************************************************Ashley  SmithBorn-­‐  New  Brunswick,    29th.  January,  1998.Died-­‐  alone,  in  isolation-­‐  Grand  Valley  Institution  for  Women,  Kitchener,  Ontario,  Canada.    19th.  October,  2007.

The  Ashley  Smith  Report,  New  Brunswick  Ombudsman  and  Child  and  Youth  Advocate,  June  2008

My life I no longer loveI’d rather be set free above

Get it over with while the time is rightLate some rainy nightTurn black as the night and cold as the seaSay goodbye to AshleyMiss me but don’t be sadI’m free, where I want to beNo more caged up AshleyWishing I were freeFree like a bird

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“She  [Ashley  Smith]  had  indicated  to  the  staff  that  she  was  bored  and  was  looking  for  attention  and  she  wanted  staff  to  enter  into  her  cell  so  that  she  could  Fight  with  them”-­‐  Ms.  Grafton,  Security  Intelligence  OfFicer,  Grand  Valley  Institution  for  Women,  Kitchener,  Ontario,  Canada.

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Barry  StanleyDecember,  2013