06. schall, pp.

229-235 11/14/02 12:15 PM Page 229

A Consumer’s Guide to
Monitoring Psychotropic
Medication for Individuals with
Autism Spectrum Disorders

Carol Schall

The reported prevalence of psychotropic medication use is high for individuals with psychiatric and behavioral problems, be
autism spectrum disorders. Little is known about the quality of services individuals applied behavioral analysis followed by
receive when taking psychotropic medication. This article reviews the best practice client/family education and manage-
recommendations for community teams to follow when an individual with an autism ment of the environment. The purpose
spectrum disorder is taking psychotropic medication. Specifically, it provides instruction
of this article is to provide parents, teach-
for caregivers on managing and monitoring psychotropic medication and includes
ers, and primary caretakers with an un-
20 questions for caregivers to ask about psychotropic medication, 12 guidelines for
caregivers to follow when giving medications, and specific examples of data collection
derstanding of how to monitor and man-
methods to measure the effect of psychotropic medication. age the care of individuals with ASD who
are on psychotropic medication.

A
utism is a lifelong developmen-
tal disability that affects an indi-
vidual’s communication, social
skills, and daily activities (American Psy-
chiatric Association, 1994). In addition,
many individuals with autism exhibit se-
vere self-injurious, aggressive, or non-
compliant behavior that can lead to seri-
ous injury to self and others and at times
require hospitalization or long-term res-
idential care. Currently, scientists know
little about the pathophysiology that re-
sults in the presentation of autism; how-
ever, they have concluded that autism is
most likely the result of complex genetic
and physiologic factors (Ellis, Singh, &
Singh, 1997).
Although medical science has not
identified any medications that address
the core symptoms of autism, many fam-
ilies seek the help of physicians to address
the most challenging aspects of the dis-
order. Families, support providers, and
physicians attempt to address behavioral
concerns with psychotropic medications,
one symptom at a time (Lewis, 1996).
Aman, Van Bourgodien, Wolford, and
Sarphare (1995) found that approxi-
mately 30.5% of individuals with autism
use psychotropic medication to address
secondary symptoms, such as aggression
or self-injurious behavior. Martin, Sca-
hill, Klin, and Volkmar (1999) estimated
that as many as 55% of individuals with
high-functioning autism or Asperger’s
syndrome use psychotropic medication.
These rates suggest that people with
autism spectrum disorders (ASD) are a
highly medicated group.
In the context of psychotropic med-
ication use, practice guidelines have
emerged to guide physicians, parents,
and interdisciplinary teams treating psy-
chiatric and behavioral problems in indi-
viduals with ASD (Kalachnik et al., 1998;
Rush & Frances, 2000). These compre-
hensive guidelines recommend that the
first treatment, in the majority of cases of
Psychopharmacology
Research in Autism
Until recently, psychopharmacologic re-
search on the secondary symptoms as-
sociated with autism has suffered from
serious methodological flaws due to nu-
merous difficulties, including:
• a lack of consensus regarding reliable
diagnostic and dependent-variable
measurement tools;
• difficulty in defining “success,” as
there is not an expectation of normal
functioning after treatment;
• an inability by most individuals to
self-report their experiences;
• the difficulties that many individuals
with ASD have in participating in
structured assessments;
• the challenge of finding samples large
enough to make meaningful
inferences; and

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PAGES 229–235
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FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES
230
• the challenge of tracking a variety of
secondary symptoms in heteroge-
neous samples (Arnold et al., 2000;
Bristol, 1997; Bristol et al., 1996).
Numerous studies have used “open la-
bel” methods and have not used double-
blind placebo controlled designs to mea-
sure the effects of treatment (Aman &
Langworthy, 2000; King, 2000). In ad-
dition, until the Research Unit on Pedi-
atric Psychopharmacology Autism Net-
work was established by the National
Institutes of Mental Health, there had
been no multisite randomized clinical tri-
als (Arnold et al., 2000). Consequently,
research in psychopharmacotherapy for
individuals with autism is still in its
infancy.
In and of itself, this is not a serious in-
dictment of the field. However, when
considering the extensive use of psy-
chopharmacology in this population,
there is cause for concern. All of these
medications carry the risk of unintended
side effects, some of which are serious.
Aman, Van Bourgodien, Osborne, and
Sarphare (1997) found that in this pop-
ulation, side effects included weight gain,
constipation, dry mouth, reduced ap-
petite, insomnia, irritability, tics, lethargy,
dizziness, and diarrhea. Remembering
that the majority of these individuals ex-
perience mild to severe communication
disorders, very often caretakers discover
these side effects only after they pose se-
rious health concerns (Aman et al., 1997;
Tsai, 2000). To assess the benefits versus
the risks of treatment in any individual,
parents, primary caretakers, and physi-
cians must work as team members in ad-
ministering, monitoring, and assessing
the effects of medications.
Treatment Guidelines
No scientific practice guidelines have been
developed on managing psychopharma-
cology treatment for individuals with
ASD; however, most physicians can treat
individuals with ASD under practice
guidelines developed for individuals with
mental retardation and those for devel-
opmental disabilities (Aman et al., 1995;
Page 230
Gadow, 1999). These recommendations
represent a call for consistent implemen-
tation of quality care and stipulate mini-
mum safeguards and procedures that
field-based teams should have in place
when treating individuals with develop-
mental disabilities who have psychiatric
diagnoses or severe challenging behavior.
They also present the conditions under
which the efficacy of medication is
judged. Specifically, they note that simply
decreasing challenging symptoms is not
enough; rather, increased quality of life is
the measure of efficacy of a medication
(Kalachnik et al., 1998). Thus, the use of
every medication must balance risk of ad-
verse side effects against the benefits it
provides.
The two sets of guidelines are strik-
ingly similar. Nevertheless, they use
different wording to describe similar rec-
ommendations. Because of the similari-
ties between each set of guidelines, this
section will review the set developed by
Kalachnik et al. (1998). Titled the “10-4
Principle,” Kalachnik et al. list 10 dos
and 4 don’ts for using psychotropic med-
ication to treat behavior problems in
people with developmental disabilities.
The 10 dos for using psychotrophic med-
ication for people with developmental
disabilities include the following:
• Do consider psychotropic medication
to be any substance prescribed to im-
prove or stabilize mood, mental sta-
tus, or behavior (p. 67).
• Do use a multidisciplinary care plan
and team to coordinate overall
treatment and care.
• Do use psychotropic medication only
for a diagnosed psychiatric disorder
or for a specific hypothesis regarding
how the medication will change a
defined behavior.
• Do obtain informed consent from,
and develop a therapeutic alliance
with, the person and/or their
guardian.
• Do track the outcomes of medication
use by collecting data on the
behavior, psychiatric disorder, and
the quality of the person’s life.
• Do observe the presence or absence
of side effects.
• Do observe and monitor the presence
or absence of tardive dyskinesia if the
individual takes antipsychotic medica-
tions.
• Do conduct regular reviews of the
person’s clinical status and systematic
reviews of behavioral and quality of
life data.
• Do strive for the lowest dose
possible.
• Do develop a peer review or quality
improvement process to evaluate and
monitor psychotropic medication
protocols.
The four don’t s of psychotropic medica-
tion include the following:
• Don’t use psychotropic drugs in place
of services or in quantities that
decrease the person’s quality of life.
• Don’t change the dose and drug
frequently.
• Don’t use multiple drugs from the
same pharmaceutical category.
• Don’t prescribe medications that have
been associated with addiction, (ben-
zodiazepine medication) serious side
effects, (antipsychotics and anti-
cholinergic medication) and PRN
medication (medication that is pre-
scribed with out a regular schedule
but is prescribed to be used “as
needed”).
These guidelines define the conditions
under which psychotropic medication is
appropriate. Specifically, they address is-
sues related to informed consent and rec-
ommend working in the context of a
multidisciplinary team. In addition, they
make recommendations regarding ongo-
ing monitoring of effects and side effects,
recommend provisions for external peer
review, and detail specific practices to
avoid (Kalachnik et al., 1998; Rush &
Francis, 2000). They present the bound-
aries within which psychotropic medica-
tion should be used for people with
developmental disabilities and mental re-
tardation.
These practice guidelines were not
specifically designed for individuals with
autism spectrum disorders. They were
developed for the treatment of individu-
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VOLUME 17, NUMBER 4, WINTER 2002

231

als who are less able to communicate
their physical, emotional, cognitive, and
mental health concerns and needs. They
account for the close monitoring such in-
dividuals require and provide safeguards
against the misuse and overuse of psy-
chotropic medication. Thus, they do ad-
dress the unique circumstances presented
when treating individuals with ASD.
Implementing the Guidelines
To implement these guidelines, parents
and primary caretakers must understand
why a physician is prescribing a medica-
tion and how to manage and monitor
that medication. Specifically, they should
request the following information from
the physician before starting a medica-
tion:
• why the person is taking the
medication,
• the behavior changes that should
occur if the medication works well,
• about how long it will take before the
behavior changes occur,
• adverse (unwanted) side effects that
may occur when the person takes the
medication,
• what to do if adverse side effects
occur,
• what to do if the people administer-
ing the medication forget to give the
medication,
• when to take the medication,
• how to take the medication,
• when to call the doctor, and
• what information to bring to the next
appointment so that the doctor can
judge if the medication is working.
This list represents the information a
parent or primary caretaker should have,
at minimum, in order to make an in-
formed decision regarding the efficacy of
psychotropic medication for an individ-
ual with ASD. In addition, the physician
should discuss ways for the parents or
primary caretakers to gather information
from teachers and others who work with
the individual with ASD (Tsai, 2000).
Figure 1 is a form parents and primary

1. Why do you recommend that this person take this medication? (To decrease a problem behavior, to treat a psychiatric disorder, to
treat the symptoms of autism, to decrease side effects from another medication, etc.)

2. Has this medication been tested for use for children? Individuals with autism? Individuals with Asperger syndrome? Individuals with
pervasive developmental disorders not otherwise specified? Individuals with mental retardation? (Discuss what the physician knows
about the research and ask for references, if desired)

3. Does this medication affect learning? If so, how?

4. If the medication works as you expect it to work, what behavioral changes should occur?

5. Approximately how long does the person need to take the medication before it will be at its full strength, where these behavioral
changes should occur?

6. What are the most common side effects associated with this medication?

7. How long do side effects last? (Will they go away in a few weeks, or will they persist as long as the person takes the medication?)

8. What should the primary caretakers do if side effects occur?

9. What information about side effects do you want us to bring to the next doctor’s visit?

10. When should we call you to tell you about side effects that seem particularly bad?

11. What time should this person take this medication?

12. Should the person take or avoid certain foods and liquids when taking this medication?

13. How should this person take this medication?

(Discuss any difficulties you may have in giving this medication; e.g., if you have to crush the medication and give it in food or drink,
talk this over with the doctor. Certain foods and drinks can actually weaken some medications.)

14. What should we do if we forget to give the medication?

15. What should we do if the person vomits shortly after taking the medication, or gets sick and cannot take the medication?

16. Are there other reasons we should call you before the next appointment?

17. What information do you want us to collect for the next appointment so that you can judge whether the medication is working as
you expect?

18. What checklists or scales should we complete before the next appointment so that you can weigh the benefits versus the risks of
this medication?

19. Do you want to order any laboratory or blood tests before the next appointment?

20. When should we schedule the next appointment?

FIGURE 1. Twenty questions to ask the physician when considering using psychotropic medication.
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FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES

232

caretakers can take with them to a doc-
tor’s office; all questions should be re-
viewed with the physician.
Although it is essential for parents and
primary caretakers to make informed de-
cisions about psychotropic medication
before starting use of a particular agent,
it is just as crucial that they have infor-
mation about how to administer and
evaluate the medication. Figure 2 lists
general guidelines for parents and pri-
mary caretakers to follow when they are
administering psychotropic medication
to individuals with autism spectrum dis-
orders.
While the individual with ASD is tak-
ing the medication, the parent or pri-
mary caretaker, who can observe the per-
son on an ongoing basis and report on
his or her behaviors, should use multiple
methods of observation and data collec-
tion to determine if the benefits of the
medication outweigh the risks. Specifi-
cally, parents and primary caretakers need
to be able to collect data quickly and eas-
ily using the following methods:
• general statements from the support
team members who attend the
doctor’s appointment about how well
the person with ASD is doing,
• written notes from others who
cannot attend the doctor’s appoint-
ment on how well the person is
doing,
• behavior data collected by the people
who live and work with the person,
• formal checklists or scales measuring
changes in behavior and psychiatric
symptoms, and
• formal checklists or scales measuring
adverse side effects.
Figure 3 is a sample data-collection
sheet for an individual who is on psy-
chotropic medication to decrease ag-
gressive behavior, bipolar disorder, and
obsessive–compulsive disorder. Figure 4
is an example of an aggregate data chart
that the doctor reviews at every appoint-
ment to monitor the medication the per-
son takes. These figures demonstrate that
by monitoring the target behavior, the
presence of side effects, and increases in
quality of life, teams can best see when
they have arrived at an appropriate use of
psychotropic medication. In this case,
there is a demonstrated decrease in prob-
lem behavior, combined with an increase
in quality of life, as indicated by outings
with friends, and a decrease in the sever-
ity of side effects. These data indicated to
this team that they had arrived at a suc-
cessful intervention plan. It is critical that
teams supporting individuals with autism
have a way of quantitatively measuring
these three indexes regarding the impact
of psychotropic medication. Figure 5 lists
standardized checklists that teams can

1. Give the medication as directed by the doctor.

2. Call the doctor’s office if you are concerned about a medication.
3. Write down any questions you have about the medication before the doctor’s appointment. If you can, give a copy of your ques-
tions to the doctor at the appointment. Ask the doctor to write and tell you the answers (or, if you cannot read the doctor’s writing,
take notes during the appointment). Be persistent and specific when getting your questions answered.
4. Make sure you know what to do if the person is sick and cannot take the medication (see Figure 1).
5. Make sure you know what to do if you forget to give a medication.
6. If the person takes “PRN” medication, write down the date, time, and dosage of every PRN administration. Bring this information to
the doctor’s appointment.
7. After each doctor’s appointment, rewrite your notes and post them close to where you keep the medication. Send a copy of your
notes to the person’s teacher or staff.
8. Approximately 1 week before the next appointment, ask the person’s teacher, staff, etc. what changes they observed since starting
the medication, or since the last doctor’s appointment.
9. Ask the doctor about a drug holiday if:
• The person has been on the medication for about a year but has not exhibited the behavior problem or psychiatric symptoms,
• You are not sure if the medication has made any difference in the behavior, or
• You are concerned that the risks of the medication outweigh its benefits.
10. If the doctor asks you to collect data on particular behaviors, bring those data to the doctor’s appointment. Make sure that all team
members know how to collect data. Ask them to report their findings to you 1 week before the doctor’s appointment.
11. If you want to try a new behavioral approach without medication, talk to the doctor about stopping the medication first before try-
ing the behavioral approach.
12. Do not stop a medication on your own. If you decide that you do not like the negative effects associated with a medication, ask the
doctor to tell you how to stop the medication. Usually, doctors stop medication gradually so that the person’s system adjusts to less
and less medication.

FIGURE 2. Parental/primary caretaker guidelines for administering psychotropic medication to an individual with autism
spectrum disorder. Note. PRN Medication is a medication that can be given only when needed. It is any medication that a
parent or primary caretaker gives when they judge it is necessary. A “drug holiday” is a planned period of time where the
person will not take the medication so that team members may assess the effects of the drug.
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VOLUME 17, NUMBER 4, WINTER 2002

233

Antecedent event
(where was this
person? what was he
or she doing? who Duration Consequence
was he or she with Behavior (what did he or (how long did (what did you do
Staff before the behavior she do that was it take person to help person
Date Time initials occurred?) a problem?) to calm?) calm?)
A OP OF
Other_____________________
A OP OF
Other_____________________
A OP OF
Other_____________________
A OP OF
Other_____________________
A OP OF
Other_____________________
A OP OF
Other_____________________
A OP OF
Other_____________________
A OP OF
Other_____________________
A OP OF
Other_____________________
A OP OF
Other_____________________
A OP OF
Other_____________________
A OP OF
Other_____________________
A OP OF
Other_____________________
A OP OF
Other_____________________
A OP OF
Other_____________________

FIGURE 3. Sample data-collection sheet for monitoring a patient’s behavior while on psychotropic medication. Reasons for
medication: to decrease obsessive–compulsive disorder, decrease bipolar disorder, decrease aggression associated with ob-
sessions and compulsions. Note. A = aggression (pinch, push, pull, bite, scratch, hit, slap, etc.); OP = Obsess/grab plastic;
OF = Obsess/grab food.

use to measure the side effects of med-
ication.
Figures 3 through 5 demonstrate how
a combination of observational data col-
lection and formal rating scales can assist
a team, in collaboration with a physician,
in measuring the effects of particular
medications. Each of these methods acts
to double check the other. Thus, when
parents or primary caretakers are partic-
ularly frustrated, they may report higher
behavioral challenges than are present.
When there are observational and stan-
dardized measures to counterbalance
fluctuating emotions, the team is better
able to identify the exact nature of the
service needed. Rather than the case
being that the person with ASD requires
more medication, the parent or primary
caretaker may need respite care. Through
such monitoring, it is possible to iden-
tify sources of stress in the parent or pri-
mary caretaker’s life. Likewise, by such
intensive monitoring, teams can make
decisions about trying to discontinue
medication with data-based rationales. In
sum, intensive monitoring is necessary to
avoid overmedication, long-term med-
ication, and unnecessary medication for
people with ASD.
Conclusions
Greiner (1959) noted,
Sensible adult patients will usually balk
when a drug is causing symptoms, but the
very young and the very old are forced to
take drugs, can’t complain or stop toxic
06. schall, pp. 229-235 11/14/02 12:15 PM Page 234

234

1
Month

FIGURE 4. Sample aggregate data chart detailing the type of data the doctor reviews at every appointment. Reasons for
medication: to decrease obsessive–compulsive disorder, decrease bipolar disorder, decrease aggression associated with
obsessions and compulsions.

Formal Side Effect Rating Scales:

• Abnormal Involuntary Movement Scale (Guy, 1976a)
• Dosage Record and Treatment Emergent Symptom Scale (Guy, 1976b)
• Subjective Treatment Emergent Symptom Scale (Guy, 1976c)
• Monitoring of Side Effects Scales (Kalachnik, 1988)
• Treatment Emergent Symptoms Scale (Guy, 1976d)

Formal Rating Scales to Measure the Effects of Medication

• Clinical Global Impressions Scale (Psychopharmacology Bulletin, 1985)
• Child Behavior Checklist (Achenbach, 1991)
• Maladaptive Behavior Scale (Thompson, 1992)
• Conners’ Rating Scales–Revised (Conners, 1997)
• The Aberrant Behavior Checklist (Aman & Singh, 1986)
• The Nisonger Child Behavior Rating Form (Aman, Tassé, & Rojahn, 1996)
• The AAMR Adaptive Behavior Scale–Second Edition (Nihira, Leland, & Lambert, 1993)
• Assessment Information Rating Profile (Bouras, 1995)
• The Psychopathology Inventory for Mentally Retarded Adults (Matson, 1997)
• Numerous disorder-specific scales to measure the presence and severity of the symptoms

FIGURE 5. Standardized checklists and scales for monitoring the effects and side effects of psychotropic medication.
06. schall, pp. 229-235 11/14/02 12:15 PM
symptoms, may not even connect them
with the drug. The mentally deficient of
any size or age cannot protect themselves
either, and they also merit special care to
avoid toxic doses. (p. 349)
Due to the nature of their disability, peo-
ple with ASD are vulnerable to the mis-
use of psychotropic medication. There is
some evidence to suggest that they may
be overmedicated—or at least medicated
with more powerful substances when less
toxic and powerful substances would suf-
fice. Without careful monitoring of the
use of psychotropic medication, patients
with ASD may experience untenable side
effects that make the risk of a medication
greater than its benefit. Consequently, it
is critical to provide parents and primary
caretakers with the information necessary
to monitor the effects and side effects of
psychotropic medication.
ABOUT THE AUTHOR
Carol Schall, MEd, is director of the Virginia
Autism Resource Center and provides consul-
tations to school, families, and community ser-
vices providers who support individuals with
autism spectrum disorder. Her research interests
include the use of psychotropic medication for
individuals with autism spectrum disorders,
and training for parents and professionals on
serving individuals with developmental dis-
abilities. Address: Carol Schall, Virginia
Autism Research Center, 549 Southlake Blvd.,
Richmond, VA 23236.
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