Turn on the television, flip open a magazine and within minutes you will encounter an ad for prescription medication. Pharmaceutical companies are in the billion-dollar business of manufacturing pills for almost anything that ails us.
Don’t get me wrong: these companies offer medications that can save lives and improve the quality of life, but their appealing marketing campaigns also “sell” us on quick treatment for all sorts of things. Migraines, acid-indigestion, restless legs, social anxiety? There’s a pill that promises to make your world wonderful again. Much of the information presented is oversimplified and targeted to the general population, making it seem like we can self-diagnose our problems, then simply ask (or beg) our doctor for the prescription. Benefits are presented in full, glorious Technicolor while side effects – sometimes as debilitating as the original condition, or worse – are painted in the lightest shades of gray.
We all want the same thing for all of our children: lives that are safe, participatory, productive, connected, happy and fulfilled. But those of us in the autism community know too well the appeal of the “quick and easy” approach to dealing with the effects of the disorder.
Some parents urge their physicians to prescribe the “magic pill” that will help their son or daughter improve – especially when challenging behaviors are present in the child. Sometimes staff or therapists urge the use of medication without being fully aware of the possible consequences or long term effects. Sometimes physicians prescribe medications in an effort to help even though they may not be able to predict the actual effects that medications may have on any individual.
The idea of medication prescribed to change the behavior of children and adults with ASD has weighed heavily on my mind for over thirty years now. In the last few years I have witnessed the growing use of medications for “behavior modification” in very young children, children who have sometimes not had the benefit of appropriate and individualized programming and whose families feel pressured to make their child “conform” or “be good.”
Some years ago, I shared my concerns with a psychiatrist named Dr. Earl Loschen at Southern Illinois University School of Medicine in Springfield, Illinois. Dr. Loschen had specialized in the treatment of children and adults with developmental disabilities for many years. We discussed what could be done to make medication use safer, increase team effectiveness and objectivity, and help physicians make the best decisions. The end result was a handout we freely shared with parents and intervention teams. Since that time, Dr. Loschen has retired, and I have continued to study this issue: a professional on a mission, so to speak and a family member of a person with ASD.
What follows are considerations in the use of medications with children and adults who have autism spectrum disorders, presented as suggestions for teams (parents, families and professionals) to bear in mind when medication is the topic of discussion. I am certainly not providing medical advice here, except in one regard: don’t stop, start or change a medication or its administration without consulting the prescribing physician. Real harm can come to people if certain medicines are not given exactly as prescribed. Talk with your doctor BEFORE making any changes.
Medication Use is Serious Business
While the benefits of medications are freely touted, what does not get mentioned as often or as clearly is that all medications have potential side effects. Some are uncomfortable or inconvenient. Some are painful and harmful. Some are catastrophic. Teachers, intervention staff and family need detailed information about all potential side effects of any medication under consideration. Without that information (which is often missing in the discussion) how can we complete a realistic “cost/benefit” analysis to be sure the possible benefits clearly outweigh the possible harm to the child or adult with ASD, now and in the future? The answer is, we can’t. Yet discussions without this information march on. And decisions are made with VERY incomplete information on the table.
An essential skill we are called upon to use any time we take any medication is this: identify if you are experiencing a side effect and quickly report this to the treating physician. So consider this complicating factor: due to the nature of autism spectrum disorders, many individuals with ASD will be unable to describe to staff/family/physicians if they are experiencing any adverse side effects or discomfort or pain from the medication. Many people with higher functioning ASD have told us it is difficult for them to identify an internal state, find the right name for it and convey that information accurately to another person. This clearly puts the person with ASD at greater risk for experiencing a side effect but not having the skills needed to communicate about it. What would happen to your behavior if you were constantly experiencing dry mouth, dizziness or headaches due to the medication given to help you have better behavior? “Compliance” suddenly takes on a different light, doesn’t it?
And what if the child or adult experiences “paradoxical effect”, in which the medication affects the person in the opposite way intended? A friend of mine needed medication to calm her anxiety during a particularly difficult period in her life. The medication she was given made her much more anxious! Luckily, she could tell that to her treating physician who then changed her medication. Many children and adults with ASD would not be able to tell us what was happening to them in response to the medication. Their behavior might get worse. And the usual process is that the team begins a discussion of increasing the dosage or adding in another medication!
But We Tried Everything Else!
When a child or adult with ASD is behaviorally a challenge or is dangerous, it can seem like we “tried everything, but to no avail.” Often that means we tried our best ideas and when we didn’t see the expected results, tolerated the situation until it became intolerable. It is most often then that the topic of medication use arises within the team, and discussion ensues even when there is no physician present. I urge teams to avoid this danger zone.
At times when staff and family think everything has been done that can be done, it’s a good time to ask for outside help - other professionals with more knowledge of ASD who can observe and consult – rather than just discuss medication. Professional staff can be invited into the family home, classroom or workplace and later meet with the team to discuss issues and supports. I have a “rule of three” I share with professionals and families: if this is the third time you are having the same problem, ask for outside help. Don’t let it go on and on until everyone is exhausted and beyond frustrated. Often an unbiased observer can provide the feedback and strategies needed to move the person towards success and get everyone back into a “can do” frame of mind.
Children and adults with ASD are often given medication to change their “abnormal” behavior. I’ve encountered individuals taking medications for years without any clear evidence of improvement. Sometimes medications are prescribed, changed, added and removed based on the impressions and opinions of those around the person with ASD. How do doctors make their decisions? They listen to feedback from parents and other people who live and work with the child or adult with ASD!
Have you ever noticed how often team members don’t agree with one another about the need for medication or its effectiveness in changing problematic behavior? “I think it is helping,” one person might say. Another team member may say, “I don’t think it is helping; he is the same as before.” A third team member might say, “I think he has gotten worse since starting this medication!” Our individual perception affects our observations, indeed.
And, you might not want to hear this, but nevertheless I will say it: we’re so close to the situation, with our emotions woven so tightly into it, that our observations are often anything but objective. The ideas that follow will help you be more objective, clear and specific in the information you share with the doctor. Better information yields better decisions all around.
To Med or Not to Med? Is that the Question, Really?
At this point, it is only fair to share my bias: in my experience, medications are needed less and sometimes not needed at all when teams have the willingness and skills to meaningfully accommodate, accept, adapt, facilitate, support and teach positive behavior. When we create truly supportive environments, based on the individuality of each person, we help children and adults avoid anxiety and confusion, which reduces or eliminates their need for many medications prescribed to “treat” problematic behavior. In supportive environments, children and adults with ASD are more likely to acquire the skills they need to function optimally in all environments.
Medication is most effective when treating a specific mental or physical illness for which the medication was developed, designed and researched. There are no medications that can make a person with ASD stop acting, thinking, feeling and responding like a person with ASD. Yet we often act as though this were true. Sometimes medications can help alleviate associated symptoms, but they cannot “cure” the person of the disorder.
There are no medications that change specific behaviors. Psycho-active medications will affect and/or suppress all behavior, adaptive and maladaptive. That’s not what we want, is it? In many cases, the behavior we are trying to change has a source we overlook within the person. Behavior IS communication, and it is our job to root out the cause of the behavior, attend to that cause, and teach an appropriate replacement behavior. Often behaviors arise because people with ASD cannot tolerate specific sensory input. Children and adults in a constant state of heightened anxiety because of sensory issues are less likely to be able to control themselves and learn new, more adaptive responses. Behavior problems also arise when individuals lack a functional, multi-dimensional communication system. One behavior may have multiple meanings or communicative functions for the individual. Any given behavior “problem” will probably require multiple environmental and programmatic adaptations to reduce or eliminate it. In many cases it’s possible to do, and do successfully – without medication.
I like to remember that children and adults with ASD are often the responders to the environment, not the creators of it. If we can change the environment, we can change what the child or adult does in response to it. What power we have! In educational and therapeutic programs, teams can focus on the effectiveness of teaching and interventions, and if the desired results are not obtained, consider changing program style, composition, interpersonal interaction, staffing patterns, expectations, and supports to “break the habit” of responding in dangerous or seriously problematic ways. As professionals discover these effective, new ways to help the child or adult with ASD have a safe and participatory life, this information can be brought into homes so that families will benefit from new knowledge and approaches.
One Facet of a Multi-Dimensional Approach
There are situations where the consideration of a medication is warranted: when a child repeatedly causes injury to self or others; when anxiety is so extreme it precludes any other form of intervention; when physiological conditions exist alongside the autism, such as seizures. However, when medications are used to treat behavior, it is my hope that the physician prescribes the medication as only one aspect of a multi-faceted program designed to treat the “whole” person and the family system. Other facets of treatment might include family or professional training, medical intervention, nutrition and dietary changes, direct instruction, peer support, environmental adaptations, communication training, counseling and therapies, behavioral instruction, reinforcement programs, relaxation training, systematic desensitization, sensory integration training, mental health counseling, social skills instruction, self-awareness and self-development opportunities, interpersonal supports and data-based team decision-making strategies.
Considerations Before Using Medication
The ideas and activities that follow are appropriate for staff and family (the team) to consider before medication is administered. If the child or adult is already taking medication prescribed to change behavior, it is not too late to implement some of these ideas, with the help of the team and the physician.
1- Carefully and precisely describe the Target Behavior(s) for which medication is being sought. Without a completely accurate and detailed description of the behavior, staff and families will not be able to collect accurate data. Descriptions such as “aggression” or “self-injury or “out of control” are not specific enough to promote the collection of accurate data, but rather describe whole categories of behavior.
2- Select and define a Replacement Behavior. This is the behavior you want the person with ASD to use instead of the target (problematic) behavior. A comprehensive program to teach the replacement behavior and provide rewards for doing so should be designed and implemented. (Sometimes after defining, teaching and rewarding replacement behavior, teams find that medication discussion is over!)
3- Create a Reactive Strategy. This is a plan for staff and family that tells them exactly what to say and do whenever an anticipated problematic behavior occurs. If staff and family members react differently and inconsistently to a problematic behavior, there is a risk of inadvertently reinforcing the problematic behavior. The Reactive Strategy is designed to provide protection, prevent injury and “fix” the situation as quickly as possible, while treating the child or adult with ASD in a respectful, valuing way. Make sure everyone in contact with the person has a copy and knows what to do.
It is a very human thing to be inconsistent, but it is one reason why behavior changes are slow to occur. The child or adult with ASD can be confused if different people respond in different ways to his behavior. Inconsistent responses can actually cause the target behavior to INCREASE!
4- Collect careful Baseline Data about the frequency, intensity, location and duration of the target behavior. Analyze the data, looking for patterns and trends in time, place, activities, staffing patterns, staff or parent interaction styles or other factors that indicate something in the person’s environment needs to be modified on their behalf in order for behavior to change. Again, this strategy requires that we understand, teach, adapt, facilitate, support and accommodate the child.
-- Data analysis indicates Jeff hits others during shaving. Jeff grows a beard, shaves in another way or shaves less often.
-- Data analysis indicates that self-injury tends to occur more than two hours after Margie has eaten. Margie is given more frequent opportunities to eat healthy food; the team also has her assessed to determine if a digestive disorder is present.
-- Data analysis indicates that Alan’s problematic behavior tends to occur frequently in the presence of a particular staff or family member. We blame no one. Instead, we analyze the behavior/attitude/communication style of staff or family with whom the problematic behavior tends NOT to occur. We identify key elements in successful interactive styles and provide training to all staff and family members in methods that are more supportive and less stressful for the child or adult with ASD.
-- Data analysis indicates that Ted’s problematic behavior tends to occur more often during unstructured times. We provide Ted with a greater degree of structure and predictability in his day and in his activities.
-- Data analysis indicates that Missy’s problematic behavior tends to occur more often on days when she has not slept well the night before. We create a relaxation ritual that helps Missy relax and fall asleep more easily or change the way we interact with Missy when she awakens during the night.
-- Data analysis reveals that David’s problematic behavior is associated with a particular place or event. The team reconsiders the necessity for David to access this place or event and changes what they do. At the same time, David’s individual plan is changed to incorporate learning the skills that will help him be more successful in this place or during this event if it is necessary for his quality of life.
Helpful Advice when Medications are Already Being Used to Treat Behavioral Issues
1- Provide accurate, objective, data-based information to physicians at all times. Clinical staff can accompany direct care staff and/or family members to doctor’s appointments and/or be an objective reporter to physicians by telephone and/or in writing (with parental permission). Everything said or written about the person with ASD should be defensible and factual, backed with concrete data. Subjective opinion may be shared, but only if it is clearly defined as opinion, not fact.
2- Continue to collect and analyze data once medication begins; make the data and analysis available to the treating physician.
3- Know how to recognize side effects or signs of overdose or toxicity. This applies to everyone involved with the child or adult taking any medication. Any change after medication administration has begun could be an indicator of a possible side effect. Create a communication system so these observations can be reported to the treating physician directly or via the parents and/or clinical staff.
4- Avoid giving multiple medications at the same time to address the behavioral challenges of the person with ASD, unless the use of one medication requires the use of another.
5- Pay careful attention and record any/all changes that occur in the individual’s life, i.e. family, routine, schedules, staffing, work, educational program, living environment, etc. during the period of medication administration. Report these changes to the treating physician.
6- Know the length of time it will take for the medication to reach its peak effectiveness. If no significant improvement is noted in the target behavior, as indicated by data collection and analysis for the trial period, discuss this with the treating physician and consider gradually reducing or eliminating the medication, following the physician’s orders.
7- Whenever possible, suggest that medication changes be made very slowly, in the smallest possible increments. Adults with ASD have told us that sudden medication changes can be unbearable and result in the person losing self-control and/or feeling very ill.
8- Sometimes physicians (or families) suggest that staff or others not be told that someone is taking a medication in order to avoid bias. This can lead to negative outcomes in those cases when immediate medical attention is needed and those responsible for the child or adult with ASD do not know about the medication. It is safer to inform everyone about all medications, all the time.
9- Give the child/adult with ASD a medication card that is kept up-to-date. It should describe all medications being taken, with dosages and administration times. In this way, emergency medical personnel have the information they need to provide potentially life-saving treatment. It is not sufficient for adults to know this information and think they can tell medical personnel in an emergency. In a true emergency, adults may be injured themselves and unable to provide the information. Plus, learning to carry and show the card is a great independence and community goal for children and adults on the autism spectrum.
10- Encourage communication among all medical staff treating the person with ASD. Doctors are often willing to communicate with one another by phone and email.
11- Purchase all medications for an individual through the same pharmacy to help prevent any adverse drug interactions.
Together we can work as effective teams, collecting and sharing objective information. If we focus on the unique needs of each individual, utilize their strengths, and adapt to their challenges, we can use “behavioral” medication much less often. When medication is needed, we can make its use safer, more effective and shorter term. That’s something on which we can all agree!
Barbara T. Doyle MS is a nationally known author, master teacher, keynote presenter and consultant, noted for her practical information delivered with humor and humanity. She focuses on children and adults with ASD, including those with additional challenges of hearing and/or vision, mental illness, deafness and deaf-blindness. She is an adjunct faculty member of Southern Illinois University School of Medicine. Barbara is a family member of three people with disabilities, one of whom has ASD. She can be contacted via her website www.barbaradoyle.com
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