Ask a Professional

Welcome to ‘Ask a Professional’ where professionals in the medical, educational or therapeutic field will answer questions relative to their area of expertise as they relate to individuals diagnosed with a disorder of the corpus callosum. Please use our online contact form to submit your questions and we will seek to post replies in a timely manner.

Previous Questions (by Topic)

Professional Panel

  • Warren S. Brown PhD is Professor of Psychology at the Graduate School of Psychology at Fuller Theological Seminary and Director of the Lee Travis Research Institute. He is actively involved in neuropsychological research, particularly related to the consequences of agenesis of the corpus callosum for intellectual and social abilities.
  • Donna Doherty, MS is a former pediatric nurse now working in the field of developmental disabilities. She spent over five years focusing exclusively on disorders of the corpus callosum, working with the ACC Network at the University of Maine, collaborating in ACC research, and providing education and support to individuals, families, and professionals. In 2014, she became a research associate with the Maine Autism Institute for Education and Research.
  • Amanda Fischer Heyser MS Ed is the proud mother of a young adult with complete agenesis of the corpus callosum diagnosed at birth. Amanda has a Masters of Science in Educational Leadership for Special Education and has served on the Special Education Advisory Panel for Arizona’s State Board of Education. She works as an Education Coordinator for the Children’s Clinic at Tucson Medical Center.
  • Thomas Kappeler MD obtained research experience in psychopharmacology during medical school at Ohio State University and trained as a general psychiatrist at University of Southern California. He has 25 years experience in psychopharmacologic management of developmental disability, including autism, mood, and psychotic disorders, and behavioral pathology consequential to brain damage or epilepsy. He has consulted to six of the Regional Centers for Developmental Disability in southern California, the Cerebral Palsy Foundation, and the Don Sutton and Jay Nolan Autism Foundations. He practices in Westwood, California.
  • Lynn K. Paul PhD is a Senior Research Scientist at California Institute of Technology, where she is directs a the Corpus Callosum Research Program and collaborates on studies of autism. Many of her publications are focused on cognition, non-literal language, and psychosocial functioning in individuals with ACC.
  • Elliott Sherr MD, PhD is an Assistant Professor in Neurology and Pediatrics at UCSF. He directs the Brain Development Research Program, a group that studies the genetics and biology epilepsy and disorders of cognition, more specifically with a focus on disorders of the corpus callosum, including Aicardi syndrome.
  • JoAnne Tully CCC-SLP her husband Tim are the parents of a young adult daughter who has complete agenesis of the corpus callosum. JoAnne has worked as a speech-language pathologist in the Delavan-Darien school district in Wisconsin.

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Cognition & Neuropsychology

What is your opinion on stem cell replacement relative to the corpus callosum?

Response by Lynn K. Paul PhD and Warren S. Brown PhD (2009)

It is our belief at this time that stem cell treatment holds very little promise for treating corpus callosum disorders. Stem cell replacement is effective in conditions where the cells were originally intact and thus can be “replaced” If corpus callosum cells are absent, as in complete or partial agenesis, the brain has organized itself without those connections and there isn’t anything to replace. The brain wouldn’t know what to do with those connections even if they could be introduced.

What is neuropsychological testing, what type of results should we expect to receive, and how do we go about getting this testing done for our son?

Response by Lynn K. Paul PhD (2010)

Neuropsychological assessment is an evaluation of an individual’s cognitive skills across many domains (verbal, visual, learning and memory, organization, etc.) for the purpose of better understanding his or her strengths and weaknesses. It involves multiple standardized tests, most of which involve paper-and-pencil, manipulating puzzles, or giving verbal responses. Performance is evaluated in three ways: comparison with age-matched peers, comparison of one’s own performance across tests, and through observation of the approach to testing. Although the tests may overlap with those given by in an educational evaluation, a neuropsychological assessment includes a broader range of domains and involves analysis of how performance relates to brain structure and function. A neuropsychological evaluation may include a learning evaluation and academic recommendations if requested.

Neuropsychological evaluations must be conducted by a board certified neuropsychologists (ABPP-ABCN) or by a clinical psychologist with post-doctoral training in neuropsychology. Neuropsychologists are Ph.D.’s, whereas a neurologist is a M.D.

A neuropsychological assessment is strongly recommended for children with DCC who are of school age. Prior to school age, developmental assessments by speech-pathologists, occupational therapists and developmental specialists may be preferable. Once at school-age, a neuropsychological evaluation can provide a realistic understanding of the child’s intellectual strengths and weaknesses, as well as current comparison with peers. The neuropsychological evaluation also serves as a baseline for comparison if the child has any later cognitive changes (for example following onset of seizures, following head-trauma, or a change with unknown causes). A neuropsychological assessment may also be helpful for adults with DCC who are facing vocational difficulties or problems coping with daily life.

 

I have a patient with ACC who has many symptoms related to autism. Are there any related articles, review or otherwise describing this relationship?

Response by Lynn K. Paul PhD and Warren S. Brown PhD (updated 2014)

Autism is a behavioral diagnosis which may involve multiple brain systems. In contrast, corpus callosum disorders are anatomical diagnoses which may involve a broad range of symptoms. Research into the behavior symptoms common in complete ACC show many similarities to those seen in autism, particularly regarding impaired social interaction and social communication. Three relevant research articles are listed below:

  • Paul, L.K., Corsello, C., Kennedy, D., and Adolphs, R. (2014). Agenesis of the corpus callosum and autism: a comprehensive comparison. Brain. 137 (6), 1813-1829.
  • Lau, Y. C., Hinkley, L. B., Bukshpun, P., Strominger, Z. A., Wakahiro, M. L., Baron-Cohen, S., Allison, C., Auyeyng, B., Jeremy, R. J., Nagarajan, S. S., Sherr, E. H. & Marco, E. J. (2012). Autism Traits in Individuals with Agenesis of the Corpus Callosum. J Autism Dev Disord. 43: 1106-1118.
  • Badaruddin, D.H. Andrews, G.L., Bölte, S., Schilmoeller, K.J., Schilmoeller, G., Paul, L.K. and Brown, W.S. (2007). Social and behavioral problems of children with agenesis of the corpus callosum. Child Psychiatry and Human Development. 38(4), 287-302.

 

I am a parent of a child with ACC diagnosed prenatal and confirmed with CT after birth. I was advised at the time that it would probably never affect her. She is now 8 and the school has identified that there are certain social skills that they are concerned about. They say she is fine intelligence wise. They are in the process of having her observed and assessed. What can we expect in the future?

Response by Lynn K. Paul PhD and Warren S. Brown PhD (2010)

The behavioral consequences of corpus callosum disorders often become more evident during later childhood and adolescent years. The corpus callosum in typical children completes development during those years, thus the absence of the corpus callosum becomes more evident as their peers gain new abilities. Individuals with ACC often have difficulty reading social cues such as facial expressions, vocal inflection, and other non-verbal communication. They may also have difficulty interpreting second-order meanings of information, such as the non-literal meaning of a proverb or idiom, or the humorous component of a sophisticated joke.

They tend to take others very literally and may have difficulty determining the importance of a particular interaction (taking a small slight too seriously on one hand and not taking in negative feedback from peers on the other hand). Due to these difficulties, as well as cognitive impairments in abstract thinking and problem solving, individuals with ACC require very concrete training about appropriate social behaviors. They are not likely to learn from subtle peer pressure but instead require direct feedback about their behavior. They may however be very gullible, due to poor understanding of other’s thoughts (impaired theory of mind) making them vulnerable to bullies and direct peer pressure.

There is no systematic research regarding social skills interventions for people with ACC, so the following suggestions are based solely on anecdotes and parent insights. If you have not already educated your child about her condition, it is important to do so now. It may be helpful to educate her peers and teachers as well, so that they may be more understanding and watch out for her. Peers are present at key times when your child may need help, so they are a great resource. It is also wise to establish a pattern of openly discussing social interactions with your child, highlighting cause-and-effect sequences and pointing out cues about what other people are feeling and thinking.

 

My grandson was born with agenesis corpus callosum and is five years old now. I am curious to find out if there is any information on disciplining a child with ACC. He gets spanked often, but it does not seem to help. Are there any studies on this?

Unfortunately, there are no research studies on this issue. (2010)

 

My 16 month old was born with mild hydrocephalic and agenesis of the corpus callosum. One of my concerns is that my daughter does not speak but MAMA and DADA. Should I have her checked and who would I see. Her doctor seemed concerned at her checkup and said we would watch it. What is your opinion? We are walking now (14-1/2month) but she does seem very wobbly and has already received stitches. She did not sit up until 11 months. We were in physical therapy but insurance refused to pay any longer since she started to walk. Is there something I can do to fight insurance on this?

Response by Lynn K. Paul PhD and Warren S. Brown PhD (2010)

Since you know that she has a brain abnormality, it is typically best to get intervention early instead of waiting to see if the delays get worse. It is wise to find out about the developmental evaluation and treatment programs available in your state. Early childhood intervention programs may involve physical therapy, occupational therapy and speech therapy. Your local school system should be able to direct you to the state-funded programs for early childhood/developmental evaluation.

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Speech & Language

I am a speech-language pathologist working with a first-grader with partial agenesis of the corpus callosum. He speaks in complete sentences and produces most sounds correctly. However, I have just begun working on his prosody. In our first session addressing voicing issues, he was unable to imitate/approximate exaggerated high and low pitch. His mother reports that he does not hum or sing tunes but he does make voices when playing independently with action figures. I have searched our ASHA professional website but did not find any therapy techniques or suggestions. Do you have any resources that might help me?

Response by JoAnne Tully CCC-SLP (2009)

I don’t know of any articles or discussions that have directly talked about prosody in children with DCC. I do know, however, that a lot of children with DCC have some degree of apraxia, and prosody disorders often accompany apraxia. The Apraxia-Kids website has a good article by Shelley Velleman about prosody. The link to that article is http://www.apraxia-kids.org/site/c.chKMI0PIIsE/b.980831/apps/s/content.asp?ct=464243

I think some of the rhythm and other activities sound like they would be fun and possibly successful in working with a child like your student. One thing to keep in mind is that children with ACC require much more repetition than other disabled children when they learn new material. If he seems to be “getting” something you teach him, he really is getting it! But it will take repetition, repetition, and MORE repetition to make sure that skill is established. That will apply to prosody and any other thing you teach him. I will keep your email address handy in case I come across more information about prosody. Good luck with your little student.

 

My daughter just turned 21 years old. At about 12 months, a neurologist stated her corpus callosum seemed narrower than normal and she might have agenesis of the corpus callosum. Another neurologist felt that we should not focus on this label because it would possibly interfere with an appropriate education. Her main diagnosis is spastic-athetoid cp. She is wheelchair bound. Her nonverbal IQ was determined to be normal at age 7 as assessed by a public school psychologist. She is now inconsistently verbal, uses a toughbook computer that is preprogrammed with phrases that she accesses. The phrases consist of recorded speech. She has a history of seizures (from Grand mal to petite mal) that have come and gone. She is now being reassessed for possibly re-occurring seizures. Despite the severity of her disability she picks up info quickly and is very active. What info do you have on young adults with this condition?

Response by JoAnne Tully CCC-SLP (2009)

I am not too experienced in the area of cerebral palsy, but I have worked as a speech pathologist on a team that treated children with CP who used voice-output augmentative communication devices. My 19-year-old daughter has complete agenesis of the corpus callosum as well as a chromosome microdeletion (1q44). She does not have CP, but she has low muscle tone and uses a wheelchair for mobility. She can crawl from place to place and stand holding onto something, but she is not able to walk — her balance just has never been good enough. Her cognitive development is quite delayed, although she seems to know a lot more than she is able to express. She can speak in short sentences and communicates her basic wants, needs, and observations pretty well, but her speech is still very delayed. She has a delightful and sometimes-sophisticated sense of humor.

I think our daughters have some similarity in their seizure histories. My daughter had severe seizures (grand mal and other) until she was 5, when a combination of medicines brought them under control. Two years ago she had a 48 hour EEG (with the original intent of possibly weaning her from seizure meds) that disclosed unusual brain activity, even though no seizures were observable in her behavior. The suspected seizure activity mostly occurred during sleep. The doctor put her on Depakote and she is still on it at the present time; it has not caused any problems for her.

Is your daughter satisfied with the level of communication she is able to achieve with the Toughbook device? Does she get frustrated by it? I am guessing you have been working with an SLP or other professional to get this working for your daughter. The biggest advice I would give you about this is to continually monitor how easy/hard it is for her to use, and not to settle for less than satisfaction. There are SO many alternative devices available and new technology is being developed all the time; there are solutions to almost every problem that comes up.

I think the biggest way in which your daughter’s agenesis of the corpus callosum might affect her communication (and other) abilities will be in the amount of repetition she may need to learn new skills. This is the thing I’ve seen most frequently in talking to SLPs who work with clients who have ACC. The typical client with ACC requires much more repetition than other clients who have speech and language disorders. A person with ACC has to forge new brain pathways when learning something new, and that requires repetition, repetition, and more repetition.

Our biggest frustrations with therapists (PT, OT, and speech) who worked with our daughter over the years were that they expected her to retain what they had taught her after only a couple of practices; Sometimes she really DOES perform a brand new skill beautifully — even a couple of times — but that does not mean it is “established” in her brain yet. When they try to have her do it the next time, she appears to have lost the skill. It’s not really lost — it is just not fully established yet.

One other area in which ACC may affect your daughter may be in her pragmatic language development — the skills of knowing when to ask questions (or stop asking questions), answer questions, “read” social cues. With a voice-output device, the timing of social responses is necessarily different, but the basic social/pragmatic skills are still important. I don’t know if your daughter has trouble reading social cues, timing her comments and questions, or understanding body language, but if she does this may be a characteristic of her ACC. An SLP may be able to help her work on skills in these areas.

 

I work with a 6 year old girl who was diagnosed with a missing corpus callosum. She also has a moderate to severe hearing loss. She is non-verbal and uses a few expressive gestures. Her hearing aids are causing ongoing ear infections and the otologist has recommended not using them. What have other educators used as a means of developing communication with non-verbal students with this disorder? We have used basic signs and a communication board. Slow and inconsistent progress is being made. Is it possible that sound even amplified sound has little to no meaning for this student?

Response by JoAnne Tully CCC-SLP (2010)

I don’t have experience specifically with any children who have DCC and hearing loss, but here are a few of my thoughts. The most important thing to know about working with children with DCC is that they require MUCH more repetition to learn than children with other disabilities (cognitive, physical, learning).

a. Sign language is one good option except that some children with DCC do not have the fine motor ability to progress very far with signs. If you see that the child can physically make some signs but is simply inconsistent with them, then keep trying — building in many, many more repetitions than you would use for any other child who has a disability. If, however, she just can’t seem to make the signs at all, then a different method is probably better.

b. A communication board of some kind is probably the option that will bring the most success, whether it is a PECS system (picture exchange) or other type of communication board. I’ve seen very low-tech methods that were effective, such as simple “brag-book” sized photo albums with photographs of commonly asked-for items, as well as clipboards and folders with velcro-attached pictures. Again, most children with DCC need much more repetition to learn than other children with disabilities, so whatever system you would use with a different child needs to be modified to greatly increase the frequency of trials for learning.

As for amplified sound having any meaning — the severity of her hearing loss, rather than DCC, will have the biggest effect on her understanding of sound. Some children with DCC have a great affinity for music and some are primarily auditory learners. If your client is able to hear at all, you might find that music and/or rhythmic types of play will help her to learn.

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Educational Strategies

Is there any research that guides us in designing literacy instruction for a first grade student who has been diagnosed with DCC?

Response by Amanda Heyser MSE (2009)

I do not know of any research that specifically answers the DCC question for literacy instruction. However, following a plan that asks the questions that produce logical answers, like the “who, what, where, when, how” of stories and asking open ended questions that cause the student to predict, sequence and retell are all effective research based strategies. First grade literacy focuses on applying phonemic awareness skills, as well as sight word recognition and vocabulary development. There are computer games, like www.starfall.com that build on word attack skills.

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Feeding, Toileting & other Milestones

My son, age 19, who has ACC, is having issues with food getting stuck in his esophagus. Could this be related to the ACC? One MD has treated it as GERD, another is telling us it is food allergies triggering the swelling of the esophageal tissues. Is there any information on this?

Response by JoAnne Tully, SLP (2009)

I have anecdotally heard of the connection between feeding issues and DCC. From my SLP graduate courses, I know that the process of swallowing involves precise timing of the tongue, muscles of the mouth and throat, breathing apparatus, larynx, esophagus, and other structures. In people who have had strokes or traumatic brain injuries, the timing and coordination of the brain’s signals can be off, causing problems with choking or food becoming stuck. Since DCC affects coordination of the brain’s hemispheres, it is possible that a person with DCC might have similar issues with timing in the swallowing process.

Another possible issue reported by families of people with DCC involves “stuffing” the mouth without realizing it is full. If an individual did that and then tried to swallow, the food could become stuck in the esophagus.

Finally, I know that chewing problems are reported among people with DCC (my own daughter included). This could be related to muscle tone, coordination/timing, or sensory problems (not sensing where the food is in the mouth). All of those are possible issues among people with DCC and could affect swallowing.

A videofluoroscopic swallow study (VFSS) may help clarify the cause of your son’s problem. The VFSS produces an x-ray video of the person’s entire swallowing process, which can be analyzed step-by-step to see where in the process a problem is occurring.

Response by Elliott Sherr, MD PhD (2009)

Anyone with brainstem dysfunction is likely to have chewing and swallowing issues. Some people with DCC have brainstem malfunction. Unfortunately, the MRI scan is not very sensitive for picking this up. If this is a new issue in an 19 year old child, then it may be the result of some new complication, whereas if it is longstanding, then it seems more likely to be related to the DCC.

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Inappropriate Behaviors – Teens and Adults

My son, 18, was diagnosed with hypoplasia of the corpus callosum recently after an MRI. Previously he was diagnosed with Asperger Syndrome and before that he was diagnosed as having simply behavior abnormalities. In general, he has problems with school/concentration, social interaction, eye contact, mind drifting, and daily moodiness, but also he is fascinated with cars, sports, computers, TV, and electronic games/gadgets. Is there a training or specific psychological help that he can follow to reduce his daily stress of coping with the real world? What is the best and short way to inform people around him of his problems, so that they will understand him better instead of treating him as a lazy young person?

Response by Lynn K. Paul, Ph.D. (2009)

While a corpus callosum malformation (DCC) cannot be “cured,” it is definitely possible to work on maximizing one’s ability to function. We all have strengths and weaknesses that we have to manage in our adult lives. Adults with DCC and adults on the autism spectrum must also learn to manage their symptoms in order function in society.

Generally, we have found that adults with DCC respond well to learning about their diagnosis. It empowers them to educate others about their condition and empowers them to take responsibility for their “unusual” behaviors. We have also found that individuals with DCC typically need much more concrete direction about life skills and more direct/ concrete feedback about social skills than is typical for people their age. Mature peers, siblings, and parents are good resources for such feedback. It can be difficult for a young adult to admit that they are prone to misreading social situations, but it is more embarrassing to respond inappropriately. Thus, it is crucial for adults with DCC to find ways to test their social interpretations before acting on them. Social skills groups for adolescents with autism spectrum disorders and the disabled student services department in a college may offer additional support for teaching social and life skills.

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Psychopharmacology

My 18 year old has dysgenesis of corpus callosum. She shows classic symptoms of Nonverbal Learning Disability (NVLD) with social interaction, but her education is impacted the most by her inattentiveness (organization, planning, failure to complete tasks, etc.). She has been treated with medication for inattentive ADD in the past. My question is: Will ADD medications help her if she has dysgenesis of the corpus callosum? She will transition from high school to junior college this coming year and need any and all help in this transition phase.

Response by Thomas Kappeler, M.D. (2009)

With respect to ADD symptoms in the context of DCC or in developmental disability generally, I would expect that stimulants (or other ADD treatments such as atomoxetine or guanfacine) may be useful. However, careful attention on the part of the care providers / parents is needed to ascertain the emotional, cognitive, and behavioral response. All three domains may be impacted, hopefully in a positive way, but in some cases, ADD medicines may even worsen symptoms, presumably because of underlying brain structural abnormalities, or functional co-morbidities, such as the presence of a seizure disorder.

So, a rule of thumb is to define the symptom profile to be targeted, then move slowly through the usual dose range of the medication chosen to address the symptoms, and then gather observations by the family, teachers, etc. With good data gathering for discussion, the medicine effects and side effects can usually be seen clearly enough to decide whether the intervention is helpful. Ideally, the environment should be kept as constant as possible during any medicine trial.

Environmental precipitants for problem behaviors should be evaluated and ruled out prior to the test period. If environmental precipitants appear to be part of the problem, the responses (after medication in place) should be measured and discussed. So, group discussions with all parties should take place, and a “democratic” process should poll votes (opinions) on the medication trial. This process promotes adherence, tends to detect positive and negative medication responses, and is inclusive of the opinions of everyone concerned.

Because the issue of transition to junior college is the primary concern, supportive psychotherapy would also be likely to be beneficial. Emotional and cognitive support from the therapist may be actually better than any additional medication, and should be employed first, if available.

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Neurological Issues

My son was diagnosed with ACC, colpocephaly, and linked chromosomes since birth. He was developing fine until he had his 4 month vaccinations. He developed seizures and had regressed in his development. He is now 17 months and is just learning to carry his head again with the help of the Early Intervention team. Do you know of any cases where vaccinations had triggered the seizures in a child diagnosed with ACC?

Response by Elliott Sherr MD (2010)

I am not aware of any connection between the vaccinations and seizures in children with DCC. It is more likely that the seizures just did not start right away, which is quite common.

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Social Security & Government Services

I was diagnosed with p-ACC several years ago. I am 47 yrs old and have quite a bit of a struggle with depression and keeping a job. I want to find a knowledgeable doctor that can help me get documentation for disability. I cannot work full time. My marriage is suffering and every day is a struggle. How do I go about getting a diagnosis for disability?

Response by Lynn K. Paul PhD (2009)

You will need to document your condition. A neurologist can provide evidence regarding the diagnosis of P-ACC. It may also be helpful to see a neuropsychologist for an evaluation of your cognitive skills and mood. A neuropsychologist addresses the relationship between brain disorders and behavior, so he or she should be able to identify any connection between your diagnosis of P-ACC and the mood symptoms you are describing. Getting disability can be challenging, so it will help to find a neuropsychologist with experience in writing disability reports.

I need to know about Social Security Disability Benefits and Corpus Callosum Disorder. My daughter is 26 years old and already gets SSI. Now that I am retiring, the Social Security interviewer told me to apply for my daughter to receive benefits through my social security retirement income. As I have looked at the Social Security website, it doesn’t look like Corpus Callosum Disorders are included, mentioned, acknowledged, etc. Does anyone have any information that might help me as I apply for her? Apparently being approved for SSI does not affect SSDI.

Response by Thomas Kappeler (2010)

DCC is a developmental disability which, while presently not specifically identified within the routine criteria for SSD, should be covered. The granting of disability depends on the degree of functional impairment present, so that is what should be fully and completely explained within the application.

Response by Donna Doherty MS RN (2010)

There are a couple podcasts on our website that focus on SS benefits, but I am not sure if they talk about your situation specifically. You may want to listen to them to see.

  • Lindsay McGinley’s lecture from 2009
  • Becky Deetz and Charo Boyd’s lecture from 2009

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Social Skills, Psychological Diagnoses & Behavior Modification

I provide community support to a 24 year old woman with DCC and mild DD. She presents as a normal, healthy adult. Her parents would like to see her attain full social independence. She is debilitated by her choice to remain mute in many, social situations, i.e.: she will verbally communicate with strangers, family members, some neighbors and with only one staff member at our agency. She has become quite proficient in letting her needs be known through body language, hand gestures and selective note writing. These techniques have served her well thus far, but they are beginning to impair her road to independent living. 1) Do you consider this form of selective mutism a direct result of her physical condition or a behavioral problem? 2) If this is a behavioral issue, can you lend any advice as to how I can best support her in achieving independence?

Response by Thomas Kappeler, M.D. (2010)

Based on your description, it sounds like her mutism may be both “behavioral” and “biological”, in that she has known structural problems that would conceivably make for “ambivalent” cognitive functioning with respect to communication. In other words, her gestural and body language communications may have developed to assist her in responding most comfortably and effectively within her own limits, much like a child might develop unique communications that effectively result in getting what is needed or wanted. Assuming this, behavioral or individual psychotherapy might “train” her or “educate” her to use her verbal capacities more directly or more willingly. Although her abnormal brain structure may result in cognitive rigidity that might impede new learning, there is no reason to assume that she would not respond to a supportive treatment. It may be helpful to find out what interventions have already been attempted and how she responded to them. As in most approaches, identifying the resistances to change may be a good place to start.

Anecdotally, I have had several cases of elective mutism or “relative” mutism, i.e., developmentally disabled persons of “few words” respond with more fluent verbal capacity and inclination when treated over time with pindolol a partial agonist beta-blocker. It would appear that beta-adrenergic agonism (adrenalin/noradrenalin like stimulation) may “warm up” the inclination to speak. This drug is also anxiolytic and has anti-panic activity, so it may also be that treatments aimed at social phobia / panic may be of help to this patient. From these experiences, I would expect that if the patient described does not respond to supportive encouragement or specific training, response might be augmented with a psychopharmacological approach.

Response by Lynn K Paul PhD (2010)

My first question is “how does mutism serve her?” I am inclined to believe that self-imposed limitations (such as selective mutism) are a means of managing one’s environment and her role in that environment. One hypothesis is that she may have developed this approach as a way to cope with a difficulty generating speech or as a way to avoid requirements of complex interactions. Is there some other reason that she might use this technique? Identifying how it serves her may be an important step in treatment because then a therapist may be able to help her generate alternative ways to meet those needs.

Whether it is consciously volitional or not, she may be able to change the pattern if she is sufficiently motivated. Which raises my second question, “Does she want to gain social independence?” It has to be her goal, otherwise, it won’t work. Elective mutism is a powerful way to gain control, and could be an effective way of sabotaging unwanted attempts to increase her independence.

Finally, a neuropsychological assessment might help clarify what, if any, cognitive impairments are contributing to her situation.

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Transition to Adulthood

My son is 23 and has complete ACC, diagnosed at birth. He is struggling right now with depression, but will not seek help because, as he says, he doesn’t like to talk to anyone. I’m not sure how to help him- should he be talking to a neurologist, psychologist, which? If yes, how do you find one who is familiar with ACC?

Response by Lynn K. Paul PhD (2009)

This can be a challenging situation and you are wise to think carefully about what would be the most appropriate intervention. For symptoms of depression, it is typically wise to have an initial evaluation with a clinical psychologist. Since your son has DCC, you might also consider having him assessed by a neuropsychologist (they may be more attuned to any neurological factors contributing to his symptoms). The psychologist should then recommend if he needs to see a psychiatrist (for medications) or a neurologist (to evaluate for other brain impairment).

So how do you find a psychologist?? Understanding of ACC/DCC is very important for any psychological or psychiatric professional who treats your son. Although his depressive symptoms may seem typical, the treatment must be tailored to accommodate his particular cognitive skills and limitations.

Here are a few things to consider when choosing a therapist.

a. Insight-oriented therapy probably isn’t appropriate for treating depression in DCC. Why? Because most adults with DCC have limited self-awareness and difficulty with abstract reasoning.

b. It may be more effective to address circumstantial causes of the depression. For example, adults with DCC may have difficulty identifying how their behavior contributes to various situations and may not recognize how others perceive them. This often results in social isolation and difficulty keeping employment (which may in turn result in depression). Treatment that focuses on social skills, workplace skills, and independent living may address such issues. Or if you know of other circumstantial complications that may be affecting your son, you might want to address those first.

c. Psychotherapy for adults with DCC should be practical and concrete. Many adults with DCC have difficulty understanding their own feelings, which may result in inappropriate behavior and may add to their difficulty in understanding others. They often have difficulty applying abstract concepts or generalizing from one situation to another. Thus, they may respond best to therapeutic approaches such as cognitive-behavioral therapy, which can provide concrete strategies for increasing self-awareness, reducing anxiety, and improving social skills.

d. It may be difficult to find a psychologist who is familiar with DCC. It might be helpful to look for someone who has experience treating adults with high functioning autism or Asperger disorder, then direct them to the NODCC website for more information.

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