An account of one person's slow journey of understanding of the role of perseveration in the lives of those afflicted with FASD.

1. 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

2. 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
FASD
were
-­‐
-­‐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.”

3. 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

4. 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-­‐

5. -­‐“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

6. 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

7. 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

8. 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

9. 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.

10. 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?.

11. “
All
the
time”
was
her
answer
I
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.

12. 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.

13. “
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

14. 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.

15. 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

16. 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

17. 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

18. 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
attention
J__
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

19. 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
Smith
Born-­‐
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 love
I’d rather be set free above

20. Get it over with while the time is right
Late some rainy night
Turn black as the night and cold as the sea
Say goodbye to Ashley
Miss me but don’t be sad
I’m free, where I want to be
No more caged up Ashley
Wishing I were free
Free like a bird
.
“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.
=================================================================================
Barry
Stanley
December,
2013