By Ingrid M. Loos Miller and Hendricus G. Loos
Part 1: Can shutdowns hurt your child?
What is a shutdown?
A shutdown is a particular sequence of behavior which we observed in
a child diagnosed as high-functioning within the autistic spectrum. In
academic settings when pressured by an adult to perform tasks that were
difficult, she became unresponsive, sleepy, immobile, and limp to the
touch for several minutes, and then fell asleep in a chair for as
briefly as 10 min. and up to 2 hours. These “shutdown” (SD) states
were always triggered by social stress of a certain kind and they
became more severe and frequent over a period of about a year.
Do shutdowns worsen the symptoms of autism?
During this time the child had entered a mainstream kindergarten
class after spending her preschool years in a special education
classroom. Soon after entering kindergarten she developed fears of the
bathroom which interfered with normal toileting and bathing, she woke
in fear several times during the night and was afraid to sleep in her
bed. She would only wear clothes of a certain type and color, became
socially withdrawn, highly emotional, and had difficulty remembering
previously mastered academics. Her drawings became illegible blobs and
she colored in large strokes ignoring the lines. She also began
exhibiting refusal behavior at school and in speech therapy. While at
school she spent all of her recess time on the swing and she craved
that activity at home as well.
The child's behavior became so extreme that she was removed from
school and was home schooled for several months. It was during home
school sessions that we recognized the pattern of shutdowns and
realized that she was probably having them at school.
We began a project to understand what was causing the shutdowns and
whether they could account for the behavior changes we observed. We
also wanted to find a way return the child to school and avoid future
shutdowns.
By eliminating shutdowns using the strategies discussed in part 2 of
this article, the SD child has overcome most of her fears, she sleeps
in her bed through the night, wears a variety of clothes, and has
become more socially engaged and animated. Eye contact has improved.
She draws legible pictures and colors within the lines. She has also
improved in academics and rarely exhibits refusal behavior. When faced
with difficulty she asks for and accepts help. She has returned to a
special education classroom and continues to improve.
This work is based upon our observations of this 6 year old girl we
call the "SD child", but the notions discussed have broader
applicability.
Medical professionals are invited to read the scientific version of
this paper entitled, "Shutdown States and Stress Instability in Autism"
which contains a more complete picture of the physiology and scientific
concepts [22].
This parent version was written to convey important information to
parents about this syndrome, how it may impact their children, and to
provide suggestions for managing a child prone to these episodes.
Shutdowns and stress
We observed a predictable sequence of behavior whenever the SD child
was pressed to complete a difficult task. We call this progression a
"stress reaction". If pressed too far, the stress reaction would
escalate into a shutdown (See fig.1).
When presented with a difficult task, the child looked away from the
work area and became distracted with objects around her. She also did
this after being corrected for a mistake, such as making a letter
incorrectly. When she was directed back to the task, she had difficulty
looking at the page, she kept looking away. She rubbed her eyes and
kept them closed. We identified eye rubbing as the threshold stress
reaction in the SD child. Once she rubbed her eyes, shutdown was
inevitable if the adult continued to press her When again redirected,
she became less verbally responsive and kept her eyes closed.
Fig.1. Progression of stress response to shutdown In order to
test if the child was attempting to "escape" the task, an enticing toy
was offered for finishing the task. She would show great interest and
return to the task but seemed disoriented, did not know what the task
was, and could not continue. She wanted the toy reward, but seemed
incapable of finishing the task.
If pressed further, the pencil would fall from her hand, she would
slump into the chair and say she needed to sleep. If reminded again of
the reward she would say," I have to sleep". Attempts to rouse her by
touch had no effect. Her hand went limp to the touch and she would not
respond. She remained conscious, but would be extremely reluctant to
respond. She would then fall asleep in the chair. She would sleep for
as little as 10 min, up to 2 hours. When she awoke, she would complete
the task, but she was more prone to shutdowns for the rest of the
session. A detailed description of the academic setting in which these
events occurred is in APPENDIX I.
If shutdowns occurred on 3 consecutive days, the child seemed prone to them for up to 3 weeks.
Stress reactions have also been observed in non-academic settings
such as: meeting strangers, greeting friends and family during home
visits, participating in play-dates with several other children,
conversations with adults when the child was asked to recall what she
did or what she liked about a recent event, and play sessions in which
a sibling pressed the SD child to participate in particular play
themes. In these circumstances the child was not pressed to respond
once she demonstrated reluctance, and this may be why the stress
response did not escalate into a shutdown.
Are shutdowns actually avoidance behavior?
One can not be sure exactly where to draw the line between
intentional and involuntary acts, but we believe shutdowns were driven
more by physiology than by learning for several reasons:
First, we have seen the SD child exhibit frank refusal behavior by
folding her arms across her chest, turning her back to the teacher and
declaring that she was angry and would not do the task. This behavior
is along the same lines as the avoidance behavior described in the
literature, which is often disruptive, violent or destructive [2,3,4].
In contrast, shutdowns are more accurately characterized by extreme
passivity.
Second, the SD child exhibited limpness followed by sleep which was
real and not feigned. It is difficult to imagine a child could sleep at
will under these circumstances.
Finally, we found no enticement could compel the SD child to
continue working on the task. She was highly motivated to earn the
particular toys that were offered for finishing the task. She tried to
finish but could not. The need to rest was apparently greater than the
desire for the toy. These observations lead us to believe that
shutdowns were not adequately explained as learned avoidance behavior.
What causes shutdowns?
Triggers
We suggest that shutdowns occur when an abnormal stress response is
triggered by a particular set of circumstances. We will first discuss
the events which seem to trigger the abnormal stress response.
In the SD child, the stress response was most easily triggered when
an adult pressured the child to respond verbally to a question which
she found difficult.
An ongoing social pressure to respond was the first element that
triggered a stress response. We only observed shutdowns when another
person was interacting directly with the child. We never observed
shutdowns when the child played alone, interacted with animals,
machines, objects or played challenging computer games.
It is likely that many autistic children have a social phobia which
is evidenced by their difficulties with eye contact and their
reluctance to engage socially. Indeed, an abnormal stress response to
social encounters probably operates in those suffering from social
anxiety disorders, as well as autistics.
We believe that the child was aware that her difficulty responding
would cause an unwanted reaction in others. She may be asked to repeat
or to clarify the answer, the adult may express displeasure in a subtle
way, or she may be told she has gave an incorrect response. The SD
child expressed a strong desire to be "a good girl" and having
difficulty answering was not something, in her mind, that a good girl
would do.
Certain tasks were especially difficult for the SD child to perform.
We found that the tasks fell into a hierarchy of difficulty consistent
with the work of Volkmar & Cohen [1] in which tasks requiring a
verbal response to a verbal question elicited the quickest stress
response (e.g., "What rhymes with hat?"). The more concrete and visual
the problem became, the less stressful it appeared to be for the child.
This pattern is what we would expect from a child with language
difficulties.
We call this combination of social and performance elements a
"social performance expectation", and in the SD child, this is what
triggers the stress response. If pressed enough, the stress response
will escalate into a shutdown.
The abnormal stress response
A normal child has a stable reaction to stress. We suggest that
shutdowns are caused by an abnormal, unstable response to stress, which
we call a "stress instability", illustrated in Fig.2.
In certain settings, the social performance expectation discussed
above brings on a mental dullness that blunts social performance. The
resulting increase of stress then causes a deepening of the dullness
and a further slippage of social performance. This vicious circle of
increasing stress and further deterioration of social performance plays
a role in shyness, introversion and possibly social phobia. In
children, this escalating cycle can lead to the shutdown episodes we
have described. Repeated shutdowns over time can cause nervous system
damage and developmental impairments within the autistic spectrum.
The stress instability causes the magnitude of the body's stress
response to far exceed that which is normal. If severe enough, the
child will shutdown so that her body can recover. The levels of stress
hormone are higher than normal and they remain elevated for a prolonged
period, both of which causes damage to the child's brain.
The stress instability is exquisitely sensitive and can be set into
motion by the slightest social impairment or development delay. The
magnitude of the instability depends on the child's sensitivity to
social stress and the reactivity of stress-processing neural circuits.
Initially, these aspects of the nervous system depend on genetic and
environmental factors such as prenatal exposure to hormones and other
substances circulating in the mother’s blood.
How shutdowns can impair a child
In the developing child, stress instability severe enough to cause
shutdowns can also cause pathological changes in the brain and
developmental delays. The resulting symptoms include emotionality,
fearfulness and anxiety, social withdrawal, learning disabilities,
language difficulties, as well as rhythmic motor activity. The
following is a brief description of the physiology we suspect is
involved in the instability and also a discussion of mechanisms whereby
the pathological changes and development impairment come about.
Lingering emotionality, fearfulness and social withdrawal
The basolateral amygdala (BLA) is a part of the brain which plays a
large role in emotions. It can become hyperreactive if exposed for
several days to excessive levels of the stress-mediating
neurotransmitter, corticotropin releasing factor (CRF). Once
hyperreactive, the BLA stays that way for several weeks [5].
We could expect a child with an hyperreactive BLA to be overly
emotional, easily frightened, and/or socially withdrawn for several
weeks after a stressful event or shutdown. Indeed, shutdowns seemed to
make the SD child more susceptible to additional shutdowns for several
days. Repeated shutdowns on consecutive days raised her susceptibility
for up to three weeks.
Thus we can see that a child that has had a difficult week at school
may have a hard time coping in the weeks to come. This may also explain
the ups and downs seen in autistic children which seem to last weeks at
a time.
What is important is that the hyperreactivity of the BLA may be
reversed by avoiding excessive stress over time. If a child prone to
shutdowns at school can be taught using low-stress methods, he will
function better and continue to improve. Unfortunately, most
educational programs for autistic children focus on "working through"
stressful situations rather than reducing them. Low-stress teaching
approaches which have been effective with the SD child are discussed in
part 2.
Stress-levels of the hormone cortisol enhance the creation of
emotional memories in the BLA [25]. A child under stress will remember
emotional, stressful, events better than non-stressful ones. He will
recall the unpleasant physical sensations, his difficulty responding to
others, and how others reacted to him, better than he will remember
other events. Painful memories increase the child's anxiety prior to
the encounter, and also his stress during the encounter. This
stress-driven mechanism then causes an even deeper deterioration in
performance. Thus we see a vicious circle leading from one stressful
social event to the next.
Learning disabilities
Sustained high levels of stress hormones called glucocorticoids can
impair verbal memory [6,8,9,10,11] and learning [12] by damaging the
part of the brain known as the hippocampus (H) [8,11]. This impairment
of verbal memory may contribute to the language deficits seen in
autistic children. In Kindergarten and early grade school, memorization
difficulties might be seen as a learning disability.
Hippocampal damage also impairs social function, thereby
contributing to stress and hence to further degradation of social
function above and beyond the effects of stress on the BLA. Thus, there
exists another vicious circle spanning a time that is long enough for
the hippocampal damage to develop.
Language difficulties
Stress also affects the ability of the prefrontal cortex (PFC) to
modulate the cognitive processing of sensory input from social
interactions. This means that the child's ability to process what he
sees and hears is impaired.
The cumulative effect of stress on the BLA, hippocampus, and the
prefrontal cortex selectively impacts language because the most
stressful events are those in which the child is expected to "perform"
using language (See fig.3).
The SD child's ability to sort out what has been said and to derive
meaning from it is impaired. Her ability to remember verbal information
is impaired, and she has particularly strong, unpleasant emotional
memories of her past difficulties. The circumstances which cause her
the greatest stress are all tied to language.
Rhythmic behavior
The SD child demonstrated an increased desire
to sit on a swing for long periods of time during the period she was
suffering shutdowns. It is known that autistic children tend to engage
in more rhythmic motor activity when difficult academic tasks are
introduced [7]. This may be because at certain low frequencies,
rhythmic sensory stimulation has a calming effect. We see this in
mothers who rock their babies, and people who relax in a rocking chair
or hammock. A child who rocks or engages in other rhythmic movements is
simply trying to calm himself. It is likely that beta endorphin is
released during this activity [13].
How common is this syndrome?
It is possible that many autistic children suffer shutdowns that are
unrecognized by parents who have not looked for these patterns, and by
physicians who have not inquired about them. Shutdowns can easily be
misinterpreted as avoidance behavior.
We expect that children prone to "sensory overload' or aggressive
outbursts such as yelling, violence, and destruction of property also
suffer a stress instability that presents differently based on the
temperament of the child.
Our explorations indicate that shutdowns may also be common among
autistic adults. Accounts of shutdowns by autistic adults are shown in
APPENDIX II.
Shutdowns brought on during social pressure to perform may be common enough to define a subtype in the autistic spectrum.
Part 2. Shutdowns and your child
Signs of hypersensitivity to social stress in infants
Shyness is an early sign of hypersensitivity to social stress which
was apparent in the SD child as an infant Since prosocial behavior
develops rapidly in the second year of life, this is the time when
intervention may be the most effective [14]. We believe that
sensitivity to social stress is a core feature of the stress
instability that we have observed in the SD child. Parents of shy
infants risk nothing by contacting their county regional center or
other agency qualified to screen for developmental delays. If the
screening reveals any developmental delays, parents should take their
child to a pediatric neurologist skilled at diagnosing autism. This may
lead to psychological testing to confirm a diagnosis.
Identifying and controlling triggers
Triggers may vary from child to child but one would expect social
situations to be particularly difficult for an autistic child.
Environmental factors should also be considered for children with
hypersensitivities to light, sounds, smells or tactile sensations. It
is equally important to identify when stress reactions do not occur.
If school is particularly difficult for your child, make
arrangements to observe him at school. Collaborating with teachers and
therapists will help to identify when the child shows stress, what the
symptoms are and what seems to help him recover. APPENDIX III describes
methods for identifying stress triggers and shutdowns in your child.
Above all, parents must realize that no one else is going to take
control and manage this problem for their children. It appears that the
medical profession has so far not seen shutdowns as an involuntary
state of severe stress. Educators and therapists may assume the
behavior is intentional and try to train your child out of it, which
will only make matters worse. The only way parents can help their
children is to know better than anyone, how their child esponds and
make sure that he is placed into an environment that allows him to
learn and to improve.
What to do if your child has shutdowns
Immediate concerns
If the child is in a crisis such as the one we described in the SD
child, the child should be checked by a physician to rule out other
causes. If the doctor finds nothing, then removing the main source of
stress from the child's life is vital.
Removing the source of stress requires that you know what it is. If
school is part of the problem, schedule a meeting with the teacher as
soon as possible to discuss the matter.
In general the child needs:
- The source of stress removed, reduced or modified so he can tolerate it.
- Preventing shutdowns should be the primary consideration.
- The child will need a few weeks to allow him to return to a
less reactive state. The child should be given plenty of time for
activities that soothe him, such as rhythmic movements or "stimming".
- The
child should be exposed to novel, exciting and enjoyable activities
that will create positive emotional memories.
- It may be necessary to temporarily lighten the child's
schedule. This can be done by reducing the number of hours the child is
in situation that is stressful for him such as school or therapy. It
can also mean reducing the duration of academic tasks that are
particularly stressful.
- If it is necessary to continue with stressful activities,
they should be made as brief as possible and paired with enjoyable
activities. Difficult tasks can be alternated with pleasant, fun
activities.
Long term solutions
In the long run, one must find a balance between reducing stress,
and participating in activities that are important to the child's
development, such as school and therapy.
Many popular interventions are based on the concept of behavior
modification which is in essence, rewarding desired behavior so the
child repeats it. Although there is proven success with these
approaches in certain cases, a child that is prone to shutdowns may not
respond well to this approach. Indeed, it may make things worse.
Autistic writer and artist Donna Williams describes her autism as a
severe social phobia , " what I see in approaches to autism is almost
always using a kind of control or imprisonment, however pleasant we
paint it. Imprisonment of any kind compels us not to stay but to obsess
on hiding, avoiding, escaping or complying in order to win reprieve."
[21].
Techniques that encourage the child to work through stress will
teach him to ignore sensations which are vital for his functioning.
With proper training, the child could instead be taught to recognize
the signs of stress and to use the tools at his disposal to reduce it.
This ability to self-manage is a "pivotal" skill which can
produce improvements in wide areas of functioning [16].
The National Autistic Society of the UK has developed an enlightened
approach for working with autistics, designated by the acronym "SPELL"
(Structure, Positive approaches and expectations, Empathy, Low arousal,
Links). The use of "Low Arousal" as a cornerstone of the program is
unique among the interventions reviewed [15]. We have not found this
approach in American schools. Nonetheless, parents can arrange that
their children will benefit from a "Low arousal" atmosphere by knowing
their children and assuring that appropriate teaching strategies are
used with their child. That is the role of the Individual Education
Plan, or IEP.
School placement for a shutdown-prone child
One of the biggest issues facing parents is whether to mainstream
their autistic child. Mainstreaming may be ideal for an child that
reacts negatively to one-on-one teaching, and is not over-stimulated by
an active environment with many other children.
A mainstream classroom may, however, be a poor choice for a child prone to shutdowns for several reasons:
- Unless you have properly advised the staff about your child's
shutdowns, what triggers them and how to work around them, your child
will probably suffer shutdowns which go unrecognized for what they are.
Furthermore, it is possible that shutdowns will be considered
"difficult" behavior and treated as such in a mainstream classroom.
This will increase the stress in your child and could result in your
child refusing to go to school.
- Mainstream classrooms have more children than special
education classes, with fewer staff members. Therefore the teacher will
have less time to monitor your child, and thus will be less aware of
the signs of stress. This may be fine for a child with some
self-management skills but it may be difficult to accommodate a child
that is just learning to manage stress.
- The speed at which material is presented and the language
level of the other children may make your child feel lost, disoriented
or embarrassed. All of these feelings only add to his stress and should
therefore be avoided.
- The school may offer additional support for your child with
a "shadow" aide. The additional attention will be helpful for your
child if personalities mesh. You must remember, however, that the aide
assigned to your child may have minimal training and little experience
with autistic children. If you know all about how your child reacts and
how to avoid shutdowns, you may be able to guide an aide to be an
effective helper for your child.
- The teacher was most effective with the SD child when she
could choose moment to moment, teaching methods that would get the best
response from her. Such a strategy may be difficult in a typical
classroom since it requires close, constant monitoring and management
by the teacher during academic tasks.
- A child coming from a special education classroom should be
transitioned into a mainstream class very gradually, starting with a
subject the child is particularly good at, and building on positive
experiences.
Make low-stress teaching part of the IEP
No matter which intervention approach is used, parents must know
whether their child is prone to shutdowns in order to advocate
appropriate services for their child. A description of the symptoms and
triggers of shutdowns, as well as the importance of avoiding them,
should be written into the IEP document. Everyone that works with your
child should have a full understanding of what brings on shutdowns, how
to prevent them, and how to work around them
The goal of the parents and educators should be first and foremost
to minimize the social stress on the child and avoid shutdowns, even at
the expense of completing schoolwork. This will put the child at ease
and make her receptive to learning. In our view, this is the only way
to instill in the child an acceptance of school work and hopefully, a
desire to learn. This can be difficult for parents to advocate because
they feel that by letting their child "fall behind" in school, they are
doing him a disservice. This is questionable because a child having
shutdowns at school is probably not benefiting at all. Instead he may
be more deeply damaged every day. When the child begins to recover,
parents will be encouraged by the improvement and will feel confident
that they did the right thing.
Educate the teacher about your child
A teacher experienced with autistic children will probably know how
to utilize low-stress teaching methods. Nonetheless, you as the parent
must make sure that the learning curve for the teacher is very short
when it comes to how to deal with your child.
This can be accomplished by making a detailed list of your child's
strengths, weaknesses and fears, what motivates him and what is
stressful for him. Describe a shutdown and what is likely to trigger
it. Make sure the teacher knows how to handle signs of stress in your
child. This list should be discussed with the teacher, and given to
her, before school begins so the teacher is forewarned and will be able
to avoid shutdowns even on the first day of school. Get the teacher's
phone number and make a point of checking with her regularly to assure
that your child is avoiding shutdowns in class.
Low-stress teaching methods that were effective with the SD child
Flexibility:
The SD child responded well to a patient teacher and a flexible
learning environment which allowed the child to direct certain
activities. This gave the child a much needed sense of power and
control.
Controlling social pressure:
The SD child was sensitive to social pressure to perform tasks that
were difficult for her. We were able to reduce the social pressure on
her by giving her more time, creating social distance, allowing refresh
breaks and rest breaks.
Use "Errorless" teaching methods that reward attempts at responding
and minimize the importance of mistakes [17 ]. This reduces the
pressure on the child to perform correctly
- Give the child more time to respond:
The teacher should speak slowly, use simple language and wait for as
long as it appears that the child is focused on the task before
speaking again. Avoid repeating the instructions and in particular,
rewording them, unless the child indicates he does not understand.
- Create social distance by letting the child work alone:
A socially avoidant child will be stressed by a hovering teacher,
even a friendly one. Donna Williams explains, "Teachers...focus
strongly on the person speaking, even prompting them to clarify whom
they are addressing or whom the communication is about. Even if they
get the person to respond to the prompting, they may not realize their
actions burned a bridge here and the person with exposure anxiety
(autism ,sic.) may become progressively more inhibited in initiating
interpersonal communication on future occasions"[21].
When possible, give the child opportunities to complete tasks
independently. The teacher can cover her eyes, walk away for a short
time, or move to a different area of the room until the child says she
is finished. Visual schedules allow the child to move from one activity
to another unassisted. This gives the child a sense of competence.
The child may want to use stuffed animals, puppets or plastic
figures to complete the task "for her". The teacher can talk through
these items also.
This is a stimulating teaching modality free from social pressure
which has been shown to be effective with autistic children [18,19,20].
The visual and tactile elements which keep children interested and
focused on the task, rather than being distracted or stressed by the
presence of a teacher. In a 2002 study, autistic children spent more
time with reading material presented on a computer and were less
resistant to its use [24 ].
Social stories are also an effective, indirect teaching method [23].
They allow for communication to the child without pressuring him to
respond
Refresh breaks:
Distract the child physically for a few seconds and have her take a
deep breath. Variations include various stretches, wiggling legs and
arms, tickling, making funnyfaces. These breaks relieve tension and are
fun for the child.
Rest Breaks:
Rest breaks should be given if the other methods fail and they
should be as neutral as possible. The child should not be given toys or
other distractions, but should be encouraged to put his head down on
the desk or something along those lines. Rest breaks of 3-10 minutes
were effective for the SD child. After 3 minutes the child was
asked whether she was ready to work again. If the child said "no" she
was given another 3 minutes. If a shutdown occurs, the child should be
provided a special safe place to rest such as a portable tent or a
quiet corner of the classroom.
Simplify difficult tasks:
Tasks should be reduced into
small parts. Only one part at a time, should be shown to the child so
he does not become overwhelmed with a large number of tasks. Visual
elements and manipulatives can also be added.
Does this approach work?
When the teaching project began with the SD child, she could work no
longer than 10 min on a subject before exhibiting a stress reaction.
She required 3 or 4 breaks during one hour of "school". A low-stress
teaching approach was adopted to accommodate shutdowns and within 2
months the child was able to work on tasks for up to 1 hour before
exhibiting an escalating stress response. Shutdowns were virtually
eliminated. The child also exhibited dramatic improvements in social
and adaptive functioning as has been previously described in part 1.
Concluding remarks
The descriptions and suggestions in this paper are based upon our
observation of a single child, and upon notions we have developed and
connected to the literature. We wrote this paper in order to shed light
on the concept of stress as a contributing factor in the symptoms
and development of autism and to provide a workable intervention. We
invite your comments at
This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
APPENDIX I
Description of home school academic setting:
We observed the SD child during Kindergarten-level academic lessons
taught by the child's mother over a period of 10 weeks, 5 days each
week. The sessions lasted approximately 1 hour with 2 breaks. Each
session consisted of 3 subjects. The child and teacher were alone in a
small room together, seated side by side at a desk. Each lesson
was presented for 2-5 minutes followed by a task to reinforce the
lesson such as copying letters or identifying a rhyming word. The goal
was to work for 15 minutes on a subject before having a 5-10 minute
break consisting of a fun motor activity chosen ahead of time by the
child. Under no circumstances was the child allowed to avoid a task.
She was required to finish it, even if long rest breaks were taken. A
visual schedule was in view of the child with symbols depicting
the order in which the subjects and breaks would occur. The teacher
offered help as needed. Since the goal was to reduce the number of
shutdowns and to increase the length of time she could stay on task
without a stress response, reinforcement approaches were varied as
needed.
APPENDIX II
Shutdowns in autistic adults
In April 2004, we posted a message on an internet message board
(Goggle group: "alt.support.autism") for autistic adults. The posting
generally described shutdowns in the SD child.
A dozen or so
responders generated over 50 messages discussing the syndrome. They
recognized it and indicated that shutdowns are well known among
autistics, but not taken seriously by either the medical community or
by their coworkers. One said, "trying to fight off shutdown s among the
most stressful things I have had to deal with." Summarized descriptions
include:
-
A flood of conflicting signals
which makes deciding on one priority impossible.
-
Feeling suddenly very sleepy.
-
The ability to hear, move, make
decisions, respond, evaluate information is shut-off.
-
Feeling confused, noisy.
-
Unawareness of the passing of time.
-
A sense of paralysis or heaviness.
-
Like a panic attack.
-
Getting tingly all over and nauseas.
-
Breathing heavily.
-
My tongue turns into a big dry sponge.
-
My sense of smell sharpens.
-
My Ears ring, eyes blur in and out.
-
I can't move because I might
attract attention, which is the last thing I want.
-
Everything gets too bright and loud, running at a speed faster than normal.
-
Like having 4 drill sergeants screaming conflicting
orders at you at once and if you don't do everything right away you
will be in big trouble and you don't know what to do first so you stand
there being yelled at.
When asked what makes a shutdown worse?
"When people tell me to "buck up"," get over it" or say, "there is nothing wrong with you".
"When people do not understand and continue to try to engage me, I
may snap, get angry or start crying for no reason. I will usually be
able to get over it in an hour or so if people just leave me alone."
What makes it better?
Respondents indicated time, sleep, rhythmic rocking, spinning, "stimming", working puzzles, and spending quiet time alone.
"The recovery time depends on the severity of the shutdown nd
whether the cause is continuing. It can last a few minutes to half and
hour, with several hours of after effects."
Autistic writer Donna Williams recalls that as a child she was
afraid of "the big black nothingness coming to eat me". As an adult she
recognized the syndrome as "sensory flooding triggering such a degree
of information overload as to cause an epilepsy-like total shut down on
the processing of incoming information" [21].
APPENDIX III Identifying shutdowns and triggers in your child
Here are 2 methods to help identify triggers, stress reactions and shutdowns in your child.
Method 1:Teaching exercise
In this exercise you will teach your child something on 3 different
days, each in a different way. This method is requires considerable
planning and effort on the part of the parent so we do not suggest it
unless there is a suspicion that shutdowns are occurring. Books on the
subject of learning styles may be helpful but they will not replace the
valuable information that this exercise give you. It is worth the
effort and you will come away with a new appreciation of teachers. The
complexity of the "lesson" should depend on your child. Assembling a
simple birdhouse lends itself to variation in teaching style and
difficulty, depending on your child.
The lessons should be in a place that is quiet and free from obvious
distractions. Sit next to him rather than facing him. It crucial that
you prepare for each lesson by having the needed materials at hand, as
well as a list of questions to ask your child. It is very difficult to
invent questions when you are dealing with an unhappy child and trying
to take notes at the same time. On some days your child will be able to
go longer than you planned. On others, the lesson may stop before you
have gotten very far into it. It is important to see these contrasts in
your child. Here is a sample worksheet that will keep you organized:
Day/Date: Start time:
Finish time:
Lesson type:
verbal, paper, assembly What we will do:
Questions I will ask :
Response:
Things you should look for:
How quickly does he seem to lose interest. How can you tell? What
does he say to indicate he does not want to continue? What is his body
language? What happens when you press him for the right answer? What
happens when you offer him a small reward for continuing after he has
decided he does not like the task? What kind of reward works? What
doesn't? How does your response effect him?
- Auditory day: Probably the most difficult thing for an autistic
child is the try to solve a problem based on verbal information alone,
and to provide a verbal response. Do not use drawings or objects. Just
talk about the parts of a birdhouse and where they are in relation to
each other. Where does the roof go? How will the bird get inside? What
colors would he like to use? What kind of birds will live there? What
words rhyme with "bird" and "roof" and "feather". What letter does
"bird" start with?
- Auditory and visual day: On another day, use paper and
pencil for the task. You can show him a picture of a birdhouse that is
assembled or have him draw one. Ask him the same sort of questions from
the day before, but not exactly the same.
- Auditory, visual and motor day: On the third day, build or
decorate an actual birdhouse. The lesson should be as hands on as
possible. Be sure to ask him the same sort of questions, yet different
from previous days.
Method 2: Observation and checklists
These
lists may help parents find patterns of stress reactions and shutdowns
in their children. The first step is to recognize behavior which may be
brought on by stress. It does not have to be exactly like the shutdowns
described herein. Perhaps your child does something that is not on this
list. If you believe your child may be suffering shutdowns, take the
second step of working backwards from the shutdowns to discover the
sequence of events leading to them. The child should be observed during
a few weeks under varying circumstances in order to uncover these
patterns. It is also important to notice when the child seems
particularly happy and relaxed
List 1: Possible stress reactions- What does your child do when he is pressured to do something he resists?
- o Averting gaze-looking away from the speaker
- Distancing-choosing to sit away from others
- Turning back to others
- Interrupting speaker
- Restlessness-Inability to sit still, fidgeting
- Covering ears or eyes
- Restlessness-Inability to sit still.
- Repetitive behavior-rocking, spinning, twirling, hand-flapping
- Staring at object
- Becoming distracted by something external
- Becoming distracted by something unknown
- Making sounds
- Destruction of property
- Violence towards others-hitting, pushing, biting
- Limpness
- Sleepiness
- Verbal unresponsiveness
- Dropping objects
- Asking for help
- Requesting other activity
- Verbal refusal
- Asking to rest
- Engages in discussion unrelated to the task at hand
- Walking away
- Closing eyes
- Rubbing eyes
- Yawning
- Slumping in chair
- Can't be made to comply in order to get a reward
- Becoming more animated
- Becoming more withdrawn
- Chewing on object
- Self-Injurious behavior
- Hiding face
List 2: Triggers
What situations make your child uncooperative, angry, or withdrawn?
If you see behavior which may be a shutdown, go through this list to
define the triggering circumstances:
- Is there a performance expectation?
- Performance for peer, turn taking, maintaining communication with peer.
- Performance for parent, complying with requests, responding to questions
- Optional participation in conversation
- Performance for therapist/teacher responding to questions or completing tasks
- Solitary play-no performance expectation
- Has there been a recent upsetting/difficult event?
- Physical condition of the child that day [3]
- Physical illness
- Medication child is taking
- Exercise prior to activity
- Hunger
- Sleep problems/sleep deprivation
- Environment
- Familiar or unfamiliar location
- Outdoors-playground, park, trail, pool
- Indoors- Home, school/therapy
- Sound-noisy, quiet
- Light- bright, dark, intermittent
- Temperature- warm, cold
- Weather-rain, sun, storm, wind
- Social Demographic
- Crowding-population density in immediate area [3]
- Age of participants
- Presence or absence of specific people [3]
- Level of interaction: background vs. direct communication
- Type of adult attention [3]
- Task demands ("Draw a circle")
- Descriptive comments ("It's not in here")
- One step directives ("give me the pencil")
- Praise statements ("good job!")
- Correction ("that isn't right")
- Inquiry ("do you need help?")
- Activity type and sequence [3]
- Quite indoor play- imaginary play, play-doh, puzzles
- Academics-work with letters, numbers, sorting, matching, counting
- Gross motor-running, jumping, riding bikes, swimming
- Passive play- watching TV or videos
- Computer games-educational vs. action
- Fine motor-drawing, stringing beads, building structures
- Play directed by an adult Play directed by peers or sibling(s)
- Play directed by the autistic child
- Sitting in a chair
- Sitting on the floor
- Listening activity such as a lesson at school
*Available at www.shutdownsandstressinautism.com/StressinAutism.pdf.
A scientific version
of this paper entitled," Shutdown States and Stress Instability in
Autism" is available at
www.cuewave.com/tau/SI-SDinAutism.pdf.
** Corresponding author: Ingrid Loos Miller, 14252 Culver Dr. # 816-A, Irvine, CA 92620 USA.
E-mail:
This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
.
*** Cuewave Corporation, Fallbrook, CA, 92028 USA.
REFERENCES
- Volkmar FR, Cohen D., A hierarchical analysis of patterns of
non-compliance in autistic and behavior- disturbed children. J Autism
Dev Disord. 1982 Mar;12(1):35-42.
- Arick JR, Loos L, Falco R, Krug DA. The STAR Program Strategies
for Teaching Based on Autism Research, Program Manual. 2004 Pro Ed Inc.
- Carr EG. Emerging Themes in the functional analysis of problem behavior. J App Behav Anal. 1994 Summer;27(2):393-9.
- Taylor JC, Carr EG, Severe problem behavior related to social
interaction.1: Attention seeking and social avoidance. Behav Modif,
1992 Jul;16(3):303-35.
- Rainnie DG, Bergeron R, Sajdyk TJ, Patil M, Gehlert DR, Shekhar
A. Corticotrophin Releasing Factor-Induced Synaptic Plasticity in the
Amygdala Translates Stress into Emotional Disorders. J Neurosci. 2004
April;24 (14):3471-9.
- Hoschl C, Hajek T. Hippocampal damage mediated by
corticosteroids--a neuropsychiatric research challenge. Eur Arch Psychiatry Clin Neurosci. 2001;251 Suppl 2:II81-8.
- Durand VM, Carr EG. Social influences on Self stimulatory
behavior: analysis and treatment application. J Appl Behav Anal. 1987
Summer;20(2):119-32.
- Bremner, JD. Does stress damage the brain?, Biol Psychiatry. 1999 Apr 1;45(7):797-805.
- Uno H, Eisele S, Sakai A, Shelton S, Baker E, DeJesus O, Holden .
Neurotoxicity of glucocorticoids in the primate brain, Hum Behav. 1994
Dec;28(4):336-48.
- Greendale GA, Kritz-Silverstein D, Seeman T, Barrett- Connor E.
Higher basal cortisol predicts verbal memory loss in postmenopausal
women: Rancho Bernardo Study. J Am
Geriatr Soc. 2000 Dec;48(12):1655-8.
- Lupien SJ, de Leon M, de Santi S, Convit A, Tarshish C, Nair NP,
Thakur M, McEwen BS, Hauger RL, Meaney MJ. Cortisol levels during human
aging predict hippocampal atrophy and memory deficits. Nat Neurosci.
1998 May;1(1):69-73. Erratum in: Nat Neurosci 1998 Aug;1(4):329.
Comment in: Nat Neurosci. 1998 May;1(1):3-4.
- Sapolsky RM. The possibility of neurotoxicity in the hippocampus
in major depression: a primer on neuron death. Biol Psychiatry. 2000
Oct 15;48(8):755-65. Comment in: Biol Psychiatry. 2000
Oct 15;48(8):713-4.
- Andersson S, Lundeberg T. Acupuncture--from empiricism to
science: functional background to accupuncture effects in pain and
disease. Med Hypotheses. 1995 Sep;45(3):271-81.
- Houck GM. The measurement of child characteristics
from infancy to toddlerhood: Temperament, Developmental Competence,
Self-Concept, and Social Competence. Issues in Comprehensive Pediatric
Nursing. 1999 22:101-27.
- SPELL Framework. The National Autistic Society, London.
This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
- Koegel LK, Koegel RL Pivotal areas in intervention for
autism. J Clin Chld Psychol. 2001 ;30(1):19-32.
- Ducharme JM, Drain TL. Errorless academic compliance training: Improving generalized Cooperation
With Parental Requests in Children With Autism. J Am Acad Child Adolesc Psychiatry 2004 Feb;43(2):163-71.
- Moore M, Calvert S. Brief Report:vocabulary acquisition in autism: teacher or computer instruction. J
Autism Dev Disord. 2000 Aug;30(4):359-62
- Heimann M, Nelson KE, Tjus T, Gillberg G. Increasing reading and
communication skills in children with autism through and interactive
multimedia computer program. J Autism Dev Disord 1995;Oct;25(5):459-80.
- Williams C, Wright B, Callaghan G, Coughlan B. Do children with
autism learn to read more readily by computer assisted instruction or
traditional book methods? A pilot study. Autism. 2002 3:6(1):71-91.
- Williams D. Exposure Anxiety-The Invisible Cage.2003. Jessica Kingsley Publishers.
- Loos HG, Loos Miller I. Shutdown States and Stress Instability in Autism. www.cuewave.com/tau/SI-SDinAutism.pdf
- Scattone D, Wilczynski SM, Edwards RP, Rabian B. Decreasing
disruptive behaviors of children with autism using social stories. J
Autism Dev Disord. 2002
12;32(6):535-43
- Bernard-Opitz V, Ross K, Tuttas ML. Computer assisted instruction
for autistic children. Ann Acad Med Singapore. 1990 9;19(5):611-6
- Buchanan TW, Lovallo WR, "Enhanced memory
for emotional material following stress-level
cortisol treatment in humans", Psychoneuroendocrinology 2001 Apr;26(3): 307-17.
|