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06. schall, pp.

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

FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES


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PAGES 229–235
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• the challenge of tracking a variety of Gadow, 1999). These recommendations • Do observe and monitor the presence
secondary symptoms in heteroge- represent a call for consistent implemen- or absence of tardive dyskinesia if the
neous samples (Arnold et al., 2000; tation of quality care and stipulate mini- individual takes antipsychotic medica-
Bristol, 1997; Bristol et al., 1996). mum safeguards and procedures that tions.
field-based teams should have in place • Do conduct regular reviews of the
Numerous studies have used “open la- when treating individuals with develop- person’s clinical status and systematic
bel” methods and have not used double- mental disabilities who have psychiatric reviews of behavioral and quality of
blind placebo controlled designs to mea- diagnoses or severe challenging behavior. life data.
sure the effects of treatment (Aman & They also present the conditions under • Do strive for the lowest dose
Langworthy, 2000; King, 2000). In ad- which the efficacy of medication is possible.
dition, until the Research Unit on Pedi- judged. Specifically, they note that simply • Do develop a peer review or quality
atric Psychopharmacology Autism Net- decreasing challenging symptoms is not improvement process to evaluate and
work was established by the National enough; rather, increased quality of life is monitor psychotropic medication
Institutes of Mental Health, there had the measure of efficacy of a medication protocols.
been no multisite randomized clinical tri- (Kalachnik et al., 1998). Thus, the use of
als (Arnold et al., 2000). Consequently, every medication must balance risk of ad- The four don’t s of psychotropic medica-
research in psychopharmacotherapy for verse side effects against the benefits it tion include the following:
individuals with autism is still in its provides.
infancy. The two sets of guidelines are strik- • Don’t use psychotropic drugs in place
In and of itself, this is not a serious in- ingly similar. Nevertheless, they use of services or in quantities that
dictment of the field. However, when different wording to describe similar rec- decrease the person’s quality of life.
considering the extensive use of psy- ommendations. Because of the similari- • Don’t change the dose and drug
chopharmacology in this population, ties between each set of guidelines, this frequently.
there is cause for concern. All of these section will review the set developed by • Don’t use multiple drugs from the
medications carry the risk of unintended Kalachnik et al. (1998). Titled the “10-4 same pharmaceutical category.
side effects, some of which are serious. Principle,” Kalachnik et al. list 10 dos • Don’t prescribe medications that have
Aman, Van Bourgodien, Osborne, and and 4 don’ts for using psychotropic med- been associated with addiction, (ben-
Sarphare (1997) found that in this pop- ication to treat behavior problems in zodiazepine medication) serious side
ulation, side effects included weight gain, people with developmental disabilities. effects, (antipsychotics and anti-
constipation, dry mouth, reduced ap- The 10 dos for using psychotrophic med- cholinergic medication) and PRN
petite, insomnia, irritability, tics, lethargy, ication for people with developmental medication (medication that is pre-
dizziness, and diarrhea. Remembering disabilities include the following: scribed with out a regular schedule
that the majority of these individuals ex- but is prescribed to be used “as
perience mild to severe communication • Do consider psychotropic medication needed”).
disorders, very often caretakers discover to be any substance prescribed to im-
these side effects only after they pose se- prove or stabilize mood, mental sta- These guidelines define the conditions
rious health concerns (Aman et al., 1997; tus, or behavior (p. 67). under which psychotropic medication is
Tsai, 2000). To assess the benefits versus • Do use a multidisciplinary care plan appropriate. Specifically, they address is-
the risks of treatment in any individual, and team to coordinate overall sues related to informed consent and rec-
parents, primary caretakers, and physi- treatment and care. ommend working in the context of a
cians must work as team members in ad- • Do use psychotropic medication only multidisciplinary team. In addition, they
ministering, monitoring, and assessing for a diagnosed psychiatric disorder make recommendations regarding ongo-
the effects of medications. or for a specific hypothesis regarding ing monitoring of effects and side effects,
how the medication will change a recommend provisions for external peer
defined behavior. review, and detail specific practices to
Treatment Guidelines • Do obtain informed consent from, avoid (Kalachnik et al., 1998; Rush &
and develop a therapeutic alliance Francis, 2000). They present the bound-
No scientific practice guidelines have been with, the person and/or their aries within which psychotropic medica-
developed on managing psychopharma- guardian. tion should be used for people with
cology treatment for individuals with • Do track the outcomes of medication developmental disabilities and mental re-
ASD; however, most physicians can treat use by collecting data on the tardation.
individuals with ASD under practice behavior, psychiatric disorder, and These practice guidelines were not
guidelines developed for individuals with the quality of the person’s life. specifically designed for individuals with
mental retardation and those for devel- • Do observe the presence or absence autism spectrum disorders. They were
opmental disabilities (Aman et al., 1995; of side effects. developed for the treatment of individu-
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als who are less able to communicate request the following information from • when to take the medication,
their physical, emotional, cognitive, and the physician before starting a medica- • how to take the medication,
mental health concerns and needs. They tion: • when to call the doctor, and
account for the close monitoring such in- • what information to bring to the next
dividuals require and provide safeguards • why the person is taking the appointment so that the doctor can
against the misuse and overuse of psy- medication, judge if the medication is working.
chotropic medication. Thus, they do ad- • the behavior changes that should
dress the unique circumstances presented occur if the medication works well, This list represents the information a
when treating individuals with ASD. • about how long it will take before the parent or primary caretaker should have,
behavior changes occur, at minimum, in order to make an in-
• adverse (unwanted) side effects that formed decision regarding the efficacy of
Implementing the Guidelines may occur when the person takes the psychotropic medication for an individ-
medication, ual with ASD. In addition, the physician
To implement these guidelines, parents • what to do if adverse side effects should discuss ways for the parents or
and primary caretakers must understand occur, primary caretakers to gather information
why a physician is prescribing a medica- • what to do if the people administer- from teachers and others who work with
tion and how to manage and monitor ing the medication forget to give the the individual with ASD (Tsai, 2000).
that medication. Specifically, they should medication, 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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caretakers can take with them to a doc- cally, parents and primary caretakers need gressive behavior, bipolar disorder, and
tor’s office; all questions should be re- to be able to collect data quickly and eas- obsessive–compulsive disorder. Figure 4
viewed with the physician. ily using the following methods: is an example of an aggregate data chart
Although it is essential for parents and that the doctor reviews at every appoint-
primary caretakers to make informed de- • general statements from the support ment to monitor the medication the per-
cisions about psychotropic medication team members who attend the son takes. These figures demonstrate that
before starting use of a particular agent, doctor’s appointment about how well by monitoring the target behavior, the
it is just as crucial that they have infor- the person with ASD is doing, presence of side effects, and increases in
mation about how to administer and • written notes from others who quality of life, teams can best see when
evaluate the medication. Figure 2 lists cannot attend the doctor’s appoint- they have arrived at an appropriate use of
general guidelines for parents and pri- ment on how well the person is psychotropic medication. In this case,
mary caretakers to follow when they are doing, there is a demonstrated decrease in prob-
administering psychotropic medication • behavior data collected by the people lem behavior, combined with an increase
to individuals with autism spectrum dis- who live and work with the person, in quality of life, as indicated by outings
orders. • formal checklists or scales measuring with friends, and a decrease in the sever-
While the individual with ASD is tak- changes in behavior and psychiatric ity of side effects. These data indicated to
ing the medication, the parent or pri- symptoms, and this team that they had arrived at a suc-
mary caretaker, who can observe the per- • formal checklists or scales measuring cessful intervention plan. It is critical that
son on an ongoing basis and report on adverse side effects. teams supporting individuals with autism
his or her behaviors, should use multiple have a way of quantitatively measuring
methods of observation and data collec- Figure 3 is a sample data-collection these three indexes regarding the impact
tion to determine if the benefits of the sheet for an individual who is on psy- of psychotropic medication. Figure 5 lists
medication outweigh the risks. Specifi- chotropic medication to decrease ag- 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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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- dardized measures to counterbalance sum, intensive monitoring is necessary to
ication. fluctuating emotions, the team is better avoid overmedication, long-term med-
Figures 3 through 5 demonstrate how able to identify the exact nature of the ication, and unnecessary medication for
a combination of observational data col- service needed. Rather than the case people with ASD.
lection and formal rating scales can assist being that the person with ASD requires
a team, in collaboration with a physician, more medication, the parent or primary
in measuring the effects of particular caretaker may need respite care. Through Conclusions
medications. Each of these methods acts such monitoring, it is possible to iden-
Greiner (1959) noted,
to double check the other. Thus, when tify sources of stress in the parent or pri-
parents or primary caretakers are partic- mary caretaker’s life. Likewise, by such Sensible adult patients will usually balk
ularly frustrated, they may report higher intensive monitoring, teams can make when a drug is causing symptoms, but the
behavioral challenges than are present. decisions about trying to discontinue very young and the very old are forced to
When there are observational and stan- medication with data-based rationales. In take drugs, can’t complain or stop toxic
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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.
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symptoms, may not even connect them tion with autism. Journal of Autism and Guy, W. (1976c). Subjective treatment emer-
with the drug. The mentally deficient of Developmental Disorders, 27, 342–344. gent symptom scale. In ECDEU assessment
any size or age cannot protect themselves Aman, M. G., Van Bourgodien, M. E., Wol- manual for psychopharmacology–Revised
either, and they also merit special care to ford, P. L., & Sarphare, G. (1995). Psy- (DHEW Publication No. ADM 76-338,
avoid toxic doses. (p. 349) chotropic and anticonvulsant drugs in sub- pp. 347–350). Washington, DC: U.S. Gov-
jects with autism: Prevalence and patterns ernment Printing Office.
Due to the nature of their disability, peo- of use. Journal of the American Academy of Guy, W. (1976d). Treatment emergent symp-
ple with ASD are vulnerable to the mis- Child & Adolescent Psychiatry, 34, 1672– tom scale. In ECDEU assessment manual
use of psychotropic medication. There is 1687. for psychopharmacology–Revised (DHEW
some evidence to suggest that they may American Psychiatric Association. (1994). Publication No. ADM 76-338, pp. 341–
Diagnostic and statistical manual of mental 345). Washington, DC: U.S. Government
be overmedicated—or at least medicated
disorders (4th ed.). Washington, DC: Author. Printing Office.
with more powerful substances when less Kalachnik, J. E., Leventhal, B. L., James, D.
toxic and powerful substances would suf- Arnold, E. L., Aman, M. G., Martin, A., Col-
H., Sovner, R., Kastner, T. A., Walsh, K.,
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et al. (2000). Research units on pediatric
use of psychotropic medication, patients chotropic medication. In S. Reiss & M. G.
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tial controlled study of risperidone. Journal
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caretakers with the information necessary Bristol, M. M. (1997). State-of-the-science in toring procedures: Thou shall, here’s how.
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ABOUT THE AUTHOR
ficc9711/Bristol.htm. ment of mood disturbances, aggression,
Bristol, M. M., Cohen, D. J., Costello, E., and self-injury in persons with pervasive de-
Carol Schall, MEd, is director of the Virginia Denckla, M. Eckberg, T. J., Kallen, R., velopmental disorders. Journal of Autism
Autism Resource Center and provides consul- et al. (1996). State of the science in autism: and Developmental Disorders, 30, 439–446.
tations to school, families, and community ser- Report to the National Institutes of Health. Lewis, M. H. (1996). Psychopharmacology
vices providers who support individuals with Journal of Autism and Developmental Dis- of autism spectrum disorders. Journal of
autism spectrum disorder. Her research interests orders, 26, 121–154. Autism and Developmental Disorders, 26,
include the use of psychotropic medication for Conners, C. K. (1997). Conners’ rating 231–236.
individuals with autism spectrum disorders, scales–Revised. Technical manual. North Martin, A., Scahill, L., Klin, A., & Volkmar,
and training for parents and professionals on Tonawanda, NY: Multi-Health Systems. F. R. (1999). Higher-functioning pervasive
serving individuals with developmental dis- Ellis, C. R., Singh, Y. N., & Singh, N. N. developmental disorder: Rates and patterns
(1997). Use of behavior modifying drugs. of psychotropic drug use. Journal of the
abilities. Address: Carol Schall, Virginia
In N. Singh (Ed.), Prevention and treat- American Academy of Child and Adolescent
Autism Research Center, 549 Southlake Blvd.,
ment of severe behavior problems: Methods Psychiatry, 38, 923–931.
Richmond, VA 23236.
and models in developmental disabilities Matson, J. L. (1997). The PIMRA manual
(pp. 150–176). Pacific Grove, CA: Brookes/ (2nd ed.). Worthigton, OH: IDS.
Cole. Nihira, K., Leland, H., & Lambert, N.
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