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ASK DR. DUMMIT
The following are some excerpts from the Let’s Talk Newsletters with W. Steven Dummit, MD
This column is intended as a forum to answer general questions about selective mutism based on my experience conducting research and treatment of children with selective mutism disorder. There is much that remains unknown in psychiatry, and where formal systematic research is lacking, opinion always steps in. I shall endeavor to make a distinction between what is objective fact and what is opinion or speculation, but it is important to remember that the practice of medicine is still a mix of scientific knowledge and clinical wisdom. Even treatments with scientific evidence for effectiveness do not work for all patients, and many of the things doctors do in clinical practice remain scientifically unproven, but appear to be helpful to patients.
For parents who may have written with specific questions about their child’s current treatment, I may not be able to answer some questions in a way that is ethical and fair to all involved. Please understand that I cannot second-guess your doctor’s decisions about treatment or medications. I have not examined the patient and do not have all the facts necessary to make specific treatment recommendations. No competent physician would presume to practice medicine through the mail or Internet. If you have questions about the specific treatment your child is receiving, you should discuss them with your doctor. If your doctor has questions related to my experience treating children with mutism, he or she should contact me directly to request research reprints or discuss the case. When you write to this column, please try to make your questions general in a way that applies to all patients or a problem that all may share.
Is there any information available to support certain kinds of settings and/or special services within the regular classroom to help transition fairly severe Selective Mutism kids into the public schools?
As noted above, unless there is documented language or learning dysfunction, I see no reason not to put a child into a regular classroom with a teacher chosen for their sensitivity to the child’s anxiety. Any “special services” in such a classroom, which draw unwanted attention to the child’s difficulty, might conceivably do more harm than good, as children with Selective Mutism are exquisitely sensitive to public embarrassment, and might react adversely to having their mutism become the center of attention in the classroom. However, there are behavioral reward methods for helping children overcome the problem without making them feel publicly scrutinized and embarrassed. Such methods are best directed by an experienced behavioral therapist.
My daughter was diagnosed with Selective Mutism upon entering pre-school at age 4. We immediately began weekly therapy (without any drug therapy) with a psychologist. Her sessions concluded when kindergarten ended. She entered the first grade without attending weekly therapy and I did not tell her new teachers of her “disability”. She entered first grade talking to both teachers, and students but still felt “uncomfortable” around her classmates. About the middle of the year her class put on a play and she was able to say a few lines out loud. Interestingly enough it was most difficult to say these few lines in front of her former pre-school teacher. (It should be noted that (1) my daughter’s pre-school teacher was very nurturing and understanding of her problem and worked with her and the therapist the entire year she was in her class. At the end of the pre-school she was whispering to this teacher. (2) However, upon encountering this teacher again a year later (i.e., in passing in the hall, at dismissal, other school play) she was once again unable to speak with her.
This fall my daughter will enter the 2nd grade (at age 7) and was given the option to either have her former pre-school teacher teach her in the 2nd grade or work with a new teacher. My daughter opted to work with her former teacher but did admit that she would need some help from her therapist. This summer her therapist and former pre-school teacher (who will now teach her full time in the 2nd grade) are going to work at school in her new classroom for 2 or 3 weeks before school starts. When my daughter works on talking in the classroom with both teacher and therapist present she shows progress quite quickly.
There have been mixed feeling about giving my daughter the choice to work with her former teacher. On one hand, this teacher knows her very well and how far she has come. The teacher will be a good judge of my daughter’s progress. On the other hand I’ve been told that this may add more pressure to my daughter and as a result her grades could suffer or she may regress in the steps she’s made in her 2 years of therapy. Has anyone else encountered this situation?
It sounds to me as if this young lady is getting results from a behavioral therapy in which a sensitive teacher and therapist whom the child trusts are collaborating. I feel that this is an ideal behavioral approach. It seems unreasonable to me to believe such a situation would lead to regression in treatment or worsening of academic performance. Most children have a natural desire to excel, both in the schoolwork and in their social and emotional growth and development. Support and encouragement from parents and teachers is vital to maintain this desire and motivation to change. Anxiety and mutism should be viewed as roadblocks on the road of emotional and social growth. If the child chose these people as allies to help her tackle these roadblocks, and is gaining confidence through their help, I feel she should be supported and encouraged in her decision. If the treatment gets good results within a few weeks, it should be continued until she is free of mutism. If it gets only a partial response, such as her being uncomfortable with more than a whisper in the classroom after several months, and the child wishes to continue working with the therapist, I would consider adding medication.
Parents often report to me that many different opinions are expressed to them about what Selective Mutism is and how it should be managed in schools and treatment settings. I addressed some of the common misconceptions in my first column about the “Common Myths about Selective Mutism”. Mutism may wrongly be attributed to oppositionality or stubbornness (rather than anxiety), to child abuse being kept secret, or to language delay. Such explanations lead to treatment recommendations, which are unlikely to help the mutism, since they do not address the underlying social anxiety. School personnel and other people who know little about the problem may offer misguided suggestions, which go against the parents’ instincts. Where knowledge is limited, opinions are often overly abundant. Parents should trust their own judgment about what is best for their children and seek our professionals who are more knowledgeable about the disorder for advice.
Is there any information available to support certain kinds of settings and/or special services within the regular classroom to help transition fairly severe SM kids into the public schools?
As noted above, unless there is documented language or learning dysfunction. I see no reason not to put a child into a regular classroom with a teacher chosen for their sensitivity to the child’s anxiety. Any “special services” in such a classroom which drawn unwanted attention to the child’s difficulty might conceivably do more harm than good, as children with SM are exquisitely sensitive to public embarrassment, and might react adversely to having their mutism become the center of attention in the classroom. However, there are behavioral reward methods for helping children overcome the problem without making them feel publicly scrutinized and embarrassed. Such methods are best directed by an experienced behavioral therapist.
I have one four-year-old Selective Mutism child and I am beginning to have concerns about his one-year brother. How early can you diagnose Selective Mutism and is it possible to diagnose a child who has not yet experienced any kind of school setting? If you can indeed diagnose children under two, what would be the prescribed method of intervention?
While it is common for multiple family members to have social anxiety and even selective mutism, I would be reluctant to consider it a psychiatric disorder in a two year old who has never been in a school setting. When a child has been consistently mute in school for several months while talking normally at home, then I believe we are justified in calling it a disorder which requires treatment, regardless of age. I have often told parents of two-and three-year olds that they might want to wait and see during the first year of school, as there is some evidence from the literature that some very young children overcome the mutism after entering school. If they do not, I offer the option of trying a behavioral approach first, before medication.
Do Selective Mutism kids tend to have other fears/anxieties in addition to talking?
Indeed! In our study of 50 children, all children met criteria for Social Phobia, which we view as the underlying cause of the mutism. About half had additional anxiety diagnoses. Specific Phobias (excessive fear of animals, insects, heights, the dark, shots/blood, etc.) were present in 34%. Separation Anxiety Disorder (fears of harm to self or family when separated from family, nightmares, trouble sleeping alone, etc.) was diagnosed in 26%, and generalized anxiety (Overanxious Disorder), with worry about a wide range of things, was found in 14%.
Can you offer some suggestions for teachers of Selective Mutism students? Maybe some ideas that have worked for others.
Regarding suggestions for teachers, I would encourage other foundation members to share their experiences of what has been useful to the teachers of their mute children. I confess I do not have really concrete or specific suggestions, since any treatment approach should be tailored to meet an individual child’s needs. My general suggestions, following the themes noted above for preschoolers, are related to helping teachers of mute children understand the problem as an abnormality of regulating anxiety responses. We all get embarrassed sometimes, and we all can get very nervous and perhaps freeze up in some social situations, like speaking to powerful authority figures or in front of a potentially hostile or ridiculing audience. These are normal social anxiety responses. However, children with Selective Mutism have an abnormally low set point for triggering such an anxiety response. They get this freezing-up response in situations, which the rest of the world sees as harmless. They are not doing this to be manipulative or stubborn, as has often been believed in the past. They are not doing it to get attention, which is really the last thing they want, since it brings overwhelming feelings of embarrassment, which worsens the anxiety response. These children are not using the mutism to hide some deep dark secret such as sexual or physical abuse, as is also often believed. School staff and teachers need to understand this as a fear of embarrassment, which has gone out of control. Sensitivity to this hair trigger for embarrassment is necessary to help the child overcome the problem. Teachers who view it as willful defiance of authority and get into a public tug of war with the child over speaking are unlikely to succeed. Teachers who quietly reward and encourage the small success get the best results, and working together with a therapist to make a behavioral plan for this is my usual recommendation.
We have not had therapy since high school years. As parents of young adults with Selective Mutism, what type of therapy should we seek? We don’t want to waste any more time on the wrong treatment.
So I do not know what the previous treatment and response was for such persons, I cannot really tell you what is the right or wrong treatment for any individual. I have no experience treating mute adults. I can offer some thoughts about what might be useful based on my experience with children. First, it is important to understand mutism as a manifestation of social anxiety, or “Social Phobia” in our current diagnostic terminology. I expect that careful examination of young adults who remain mute would reveal that they also remain socially phobic and avoidant. Recent research in adults with this problem has shown that both medications and cognitive-behavioral psychotherapy can help. Probably a combination of both would be the approach with the greatest chance of success. Medication and behavioral treatments usually yield significant improvement within weeks to a few months when studied systematically. This is the answer I can give based on science.
Other forms of “insight-oriented” or psychodynamic psychotherapy might help with the interpersonal difficulties or unhappiness due to relationship problems, which such patients often have, but whether such treatments are effective on the core symptoms of social anxiety has not been examined in a rigorously controlled scientific study (as far as I know). The lack of experimental research into a treatment, which many people find beneficial in improving their lives, does not mean such treatment is “wrong”, but if such treatment has not resulted in improvement in anxiety symptoms or social functioning within a few months, alternatives with scientific evidence of efficacy should be considered. Based on the many children who have come to me after not improving with psychodynamic treatments, it is my opinion that such treatment is less likely to be effective for social anxiety and selective mutism than behavioral therapy and medication.
You answered my question about Prozac in a previous newsletter. I’m ready to start looking into treatment for my twin 8 year old daughters. My question is: Who do I need to tell that they are on medication? Should I share this with their older sister, stepsister and stepbrother? I know of a teenager who was on Prozac when a friend found out, the whole school knew and teased her. Prozac has gotten such a bad “rap” I’m not sure who to share this with.
Confidentiality is important. Nobody but parents and doctors needs to know anything about the psychiatric treatment of your children. Even in our relatively enlightened modern times, there is still stigma attached to treatment for mental disorders. We all wish it were not so, but this is a fact of life. It may be difficult to hide the fact of medication treatment from family members, so a parental discussion with siblings about the importance of confidentiality and privacy may be a good idea. Teachers and classmates do not need to know details of treatment or medications and it should be the parent’s decision who is told anything about a child’s treatment. It is a private matter between doctors and patients and should be treated as confidential medical information as required by law.
For those of us who have chosen courses of medication to treat fairly severe cases of Selective Mutism, how long would you keep a preschooler on fluoxetine without significant improvement before you decide that a different medication should be tried?
The answer to these questions is not simple. In my practice, I have never encountered a preschool-aged child who did not respond to fluoxetine (Prozac). First, let’s define what is meant by “significant improvement” with treatment. Some clinicians and parents might view this as meaning completely well, with no signs of any emotional or behavioral problems. However, in research settings, it usually means that outcome measures showed statistically meaningful improvement with treatment, even when patients might still have “significant
improvement” with treatment. Some clinicians and parents might view this as meaning completely well, with no signs of any emotional or behavioral problems. However, in research settings, it usually means that outcome measures showed statistically meaningful improvement with treatment, even when patients might still have significant symptoms and not be considered well. I shall use it to mean something in between these two extremes: a child whom everyone involved agrees is functioning much better, even if some mild symptoms persist.
There are several possible explanations why a young child on medication might show inadequate response. Perhaps the lack of response is due to a dose that is too low. Some children have side effects, which necessitate using lower doses, but most children tolerate Prozac 20 mg per day very well, and I try to get all kids up to this dose, regardless of age. However, doctors with less experience treating young children may be overly cautious, and never raise the dose to the effective range. This is perhaps the second most common reason for the lack of pharmacologic response in proven psychiatric treatments in general. The most common reason is that the patient does not actually take the medication as prescribed and does not tell the doctor that they are not taking it, leading the doctor to conclude that the drug is not effective for the patient.
Another explanation is the time needed for medication response of social anxiety and mutism. Our first study of Prozac at Columbia University only measured treatment effects for 9 weeks. Many of the children were showing “reduced” social anxiety at the ninth week, but had not yet overcome the mutism in important settings like school. Dr. Black’s study at NIMH also found only partial improvement after 12 weeks. Our second study, designed to overcome this problem of time, examined effects of Prozac for 17 weeks. This study and clinical experience have shown that it may take 4 to 6 months at a reasonable dose to see a good response to Prozac, where a child is beginning to talk in school and has few symptoms of anxiety.
If neither of these reasons is true of the case in question, I would consider raising the dose and adding a behavioral treatment plan. If an increased dose is not possible, due to side effects, I might consider trying a different medication if a child has no improvement after 6 months on Prozac. However, this has never happened on one of my preschool-aged patients, so I do not have any experience with other drugs for very young children.
What drugs other than fluoxetine have been used successfully with young (pre-school) Selective Mutism kids?
As mentioned above, I do not have direct experience with other medications in very young kids. I do not know specifically of studies to examine the safety or efficacy of other medications in children under school age. Most research review boards have traditionally been reluctant to approve psychotropic medication studies in preschoolers, and our formal studies only went as young as age 5 after we showed the Institutional Review Board that Prozac appeared to be very safe in the 6-12 age group. In non-research settings I have used Prozac in children as young as four with good results. Other medications to consider include Luvox (fluvoxamine), which is similar to Prozac, phenelzine (reported in a single case report of a six-year-old with Selective Mutism). Anafranil (clomipramine), and some of the newer psychotropic medications for which use in anxious children has not yet been reported din the medical literature. Each of these has pros and cons as the next choice and none are formally FDA-approved for this use or age group (but neither is Prozac). Talk to your psychiatrist about these issues.
Are there any studies available (or even in progress) that discuss the long-term effects of fluoxetine?
There are not specific studies in children, to my knowledge, which address this question systematically with a long-term follow-up design. Prozac has been the top-selling antidepressant worldwide for many years now, and has been used by many millions of people. Post-marketing surveillance by the manufacturer reports of adverse effects of Prozac (as required by the FDA) has not detected any serious long term problems from the medication, even in patients maintained on it for several years for illnesses such as Obsessive Compulsive Disorder and depression. There are studies, which indicate that it does not increase risk of birth defects in pregnant women, an importing fining supporting its safety in general. There is no evidence to date that it has any long-term harmful effects.
I have twin eight-year-old girls (fraternal) both with Selective Mutism. In kindergarten, they went for “play therapy”, I was told they would grow out of Selective Mutism, just keep “gently encouraging” them. Now they are in third grade and attending therapy. This doctor is trying relation therapy. They will both talk at home to parents, siblings, and relatives. They will talk at relatives houses. They will talk to friends at our house. When they visit friends, they will talk to them, but not the parents or other siblings. They will not talk at a friend’s birthday party. They will talk at family parties, or their own birthday party. They won’t talk at activities outside school such as Brownies, or gymnastics. They won’t talk to their friends in school, not even at recess. They will whisper to their teachers, when the teachers request a verbal response. I have heard other children have been “cured” with Prozac; can you explain the pros and the cons? At what age or point would you recommend oral medication? Can you recommend another form of therapy for us to try?
This description of the symptoms of Selective Mutism in these girls is typical of children I have seen, although many children will not even whisper to teachers. This parent does not indicate whether whispering to teachers is a result of treatment or the girl’s baseline behavior. In the experience of patients who have come to play therapy, family therapy and me have not helped at all. More directive and behaviorally oriented approaches to overcoming anxiety have helped some children according to an uncontrolled case report literature (“uncontrolled” means the treatment lacked an experimental design necessary to prove scientifically that the treatment works and is more than a placebo effect). Such treatment should involve a stepwise “desensitization” plan for speaking in different settings, with rewards for each goal on the ladder, perhaps including, but not limited to, the relaxation techniques mentioned above. The idea is to start with the least anxiety-provoking new speech goal, such as speaking to a friendly neighbor, and as the child succeeds at the easier goals, gradually move toward the more anxiety-provoking goals, such as speech in the classroom. In my experience, if such behavioral treatment does not result in significant improvement in six months to a year (see the beginning of this column for my definition of improvement), it is time to try medication, since the child has not responded to non-medication treatment.
Prozac works to reduce the excessive anxiety and inhibition, which underlies the mutism. Over time, it resets the hair-trigger for anxiety responses described above. Children under about 10 years old usually get an excellent result in four to six months. Older children, who have been struggling with the disorder much longer, and are much farther behind in terms of social skills development, seem to get the reduced anxiety and inhibition from medication, but often fail to change speech behavior in school with the same ease as younger kids. They may need additional work on behavior skills to overcome the fear of speaking and try new social behaviors, especially in school. They are struggling with more than just the anxiety; they must fundamentally change their self-concept and develop new social behaviors that other children mastered much earlier in life. It is no longer a pure anxiety problem, but has also become a character development problem. This is why I tell parents not to wait too long to try medication if other treatments have not succeeded. In the case of the twins presented above, non-medication treatments seem to have failed for several years. It is time to add medication
The cons of Prozac are the possibility of side effects, which are typically mild, transient, and easily managed with dose reduction. Most children do not have any problematic side effects if the medication is started with a low dose and gradually increased. In children with Selective Mutism, the commonest problems include excessive disinhibition (an overshoot of the therapeutic response, easily managed by lowering the dose), insomnia, stomachaches or diarrhea. Also reported in adults, but uncommon in children, are headaches, appetite suppression and increased nervousness. Rarely, as with any medication, a rash may occur which required discontinuation of the drug.
My daughter occasionally asks me when she can discontinue taking Prozac to help her cope with Selective Mutism. She is twelve and in grades seven and has been on Prozac for almost two years. I am worried that going off the medication will cause a setback. I would appreciate an opinion on this please.
To make a recommendation specifically about this child, I would need to know more about how quickly and how completely she responded to the medication. As I discussed above, children age 10 and up (and occasionally even younger) may not get the dramatic and quick “cure” of anxiety and mutism. The medication reduces social anxiety and inhibition, but the change in behavior and social skills is much slower than in younger children and requires much more work with therapists, as well as sometimes a change to a new school setting where nobody knows of the child’s previous problem with mutism. I generally recommend keeping younger children on maintenance medication for at least four to six months after they have become free of all symptoms of anxiety and mutism, with the aim of permitting them to catch up developmentally in their social skills and behavioral successes. For older kids, I do not know what the ideal length of maintenance treatment should be, and have sometimes kept them on medication for several years because they were not entirely free of symptoms. In general, if a child on medication has been completely free of symptoms for at least a year in school, I have not seen high rates of relapse of mutism when medication is stopped. I would put the risk of relapse for such a child around 10%, which is acceptably low and is considered by most families to be outweighed in the risk benefit equation by the high cost of continued treatment. However, partial responders, who are not yet completely free of symptoms are at much higher risk of relapse and should probably be kept on medication.
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