Dr. Lynn K. Paul, who is featured in the segment on agenesis of the corpus callosum (AgCC), is the founding president of the National Organization of Disorders of the Corpus Callosum (NODCC). She is also the head of the Corpus Callosum Research Program at the California Institute of Technology. This program represents the hub of the AgCC Research Consortium, a multisite collaborative effort whose other members include the Fuller Graduate School of Psychology/Travis Research Institute and the University of California in San Francisco.
The Caltech program’s two main goals are to study emotional responsiveness and social cognition in adults with AgCC and to learn how the brain adapts anatomically to compensate for the absence of the corpus callosum. These studies will increase understanding of AgCC and will help to clarify the role of the corpus callosum in social-cognitive and emotional processing of people with other conditions, such as autism and schizophrenia.
AgCC is conservatively estimated to occur in one in 4,000 live births. Due to the rarity of the condition and the fact that diagnosis has become possible only with the advent of brain imaging, AgCC has been the subject of only limited study, and little information is available on how best to deal with it.
Currently, families must learn by trial and error how to help children with AgCC. Research at Caltech is designed to improve our understanding of how people with AgCC think and behave. These insights will make it possible to refine treatment and education of these individuals to maximize their social function and enrich their lives.
Mapping the Emotional World of AgCC
Parents of children with AgCC report that impaired social skills and lack of personal insight are the greatest hurdles in the children’s daily lives. Emotional immaturity, social incompetence, lack of social judgment and planning, and inability to communicate or recognize emotions makes socialization difficult. People with AgCC tend to prefer much younger friends and find conversation difficult to initiate or maintain. Additional barriers evident in AgCC are literal mindedness, difficulty understanding another person’s perspective, and limited capacity for nuanced empathy. Many people with AgCC have difficulty learning to plan or execute daily activities such as showering, doing homework, or paying bills. As a result of these challenges, people with AgCC may tend to have lives that are socially impoverished or characterized by conflict at home and work.
Understanding how people with AgCC interpret the world may reveal ways they can live in it more easily. One of the studies undertaken by researchers at Caltech involved finding out how patients with primary AgCC interpret emotions on people’s faces. To do this they employed eye tracking — a head-mounted system that monitors what the wearer looks at by precisely recording the frequency, regions, and duration of eye fixations.
A group of patients with AgCC and a comparator group of unimpaired participants were shown a standardized set of photographs of people’s faces. The pictures conveyed a range of emotions and were shown for one second each. Patients with AgCC were consistently less able than the comparator group to identify the emotions conveyed in the pictures, especially those showing anger and surprise. They were also less likely to look at the eyes, but rather focused primarily on the nose. This study supports a hypothesis that abnormal facial scanning may be a contributing factor in the poor emotion recognition and subsequent psychosocial deficits of patients with AgCC.
In another study, nine high-functioning individuals with AgCC were shown pictures of emotionally intense social scenes. In addition to the eye-tracking system, psychophysiological responses (galvanic skin response, heart rate, and respiration rate) were recorded to gauge their emotional arousal. Compared to an unimpaired group, patients with AgCC rated the images as less emotionally intense, particularly with potentially troubling pictures, such as photos depicting mutilation. Although these cognitive ratings of their emotions were subdued, their psychophysiological response, particularly galvanic skin response, conformed more closely with that seen in the comparator group. This suggests that although the right hemisphere is capable of triggering an appropriate psychophysiological emotional response, the lack of communication between the left and right hemispheres prevents patients from expressing these emotions in their ratings.
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Congratulations, Dr. Paul! It is wonderful to see your work with the AgCC population getting some recognition.
This is clearly important work being done by Dr. Lynn Paul and her colleagues. I imagine many lives will be improved through this research. Kudos!
anychance that it my be available by streaming for those affected but not in the US?
thanks
Dr. Paul is brilliant. I look forward to viewing this segment.
Congratulations Lynn! I look forward to seeing the program!
Thank you Dr. Paul!! Your many hours of tireless research will help give our children the hope they need to reach their full human potential.
I was more than happy to be a part of this research to help better understand the condition. Thank you Lynn
I would gladly help again anytime
Thank you for this Dr Paul. I am going to share this with my family and those working with my son Alex. Thanks again for emailing me back so quickly.
Parents of children with ACC need YOU….
I appreciate you.
WOW! I remembe the research on the faces. I would never have guessed the out come of the research, though! How great that I was a part of this pioneered research! Keep up the great work you guys!!!
Thank you for EVERYTHING that you have done for all of us. You are making our lives a lot easier to live by doing research and helping others understand us a little better.
I hope I can be a part of some more research studies with you again soon.
Congratulations Dr. Paul! Finally, the world will begin to understand this condition. Thanks so much for having us part of your study and we are more than happy to participate again. All the Best AND Thanks!!!!
My daughter, Allison, who is 6 has Agenisis of the Corpus Collosum. I found your name while watching “The Real Rainman” on PBS. Outside of being very literally minded, Ally does not show any signs of ACC. She is reading on a 2+ grade level and is very social. Thank you for your work and research.
Lynn, you are amazing!
Well, research done at Iowa in the 1990s showed that a significant number of people in a small sample with the Autism label had corpus callosum anomalies. this seems to have fallen by the wayside, but as most people know, those on the Autism spectrum often have faceblindness, social delays etc etc. My son has CC Dysgenesis. In many ways he is more like than unlike the rest of the family who are all on the Autism spectrum, yess, all you NODCC people, even their mom who was constantly vilified on your web discussions for speaking her mind, while you thought anything was acceptable from the “wonderful” adults with ACC. Would be interesting to know if this will air outside the NY area.
I have no idea about your program but I saw your research and interview at a PBS tv show. I have a 16 yr old son who isnot doing good in school. The first time I asked him to study algebro for 2 hours then the following day he has a splitting headache, then I asked him to read his history, science, english books and he told me he can’t see the letters and had his eyes checked and he has 20/20 vision. I just need guidance on how to make of his ability to utilize his brain or if his brain is stronger than his will/ desire to discipline thru study. I apologize if i can’t be clear or vague of his condition
Thank you all for your comments. The range of capabilities in AgCC is broad and this show only demonstrates a segment of it. If you or a family member has a corpus callosum disorder, please go to http://www.nodcc.org for more information. And please post your story in the “Our Stories” section. The more people who join and post their stories on nodcc.org, the better understanding we will have of this range of conditions. Blessings to all! Thank you for watching. Lynn
First I want to say thank you for all of the work that you have done with your research. I don’t see that this show is airing anywhere around Phoenix. Is there a way that I could get a taped copy? I am very interested. I have a 19yr old daughter with a lot of behavior problems.
I missed the show and would love a copy of it as my son has ACC and has been tested by Dr. Lynn Paul!
Dr. Paul, As a parent of a learning disabled 25 year old, I very much appreciate your wonderful work. I was especially moved by the young man from California that you are working with. His desire to learn how to live on his own was very much like that of my daughters. Currently she is attending the Minnesota Life College. It is a small school near Minneapolis with 30 young adults. The mission of the school is to teach learning disabled young people how to live and work on their own. They have a very successful 3 year program and work with young adults with varying degrees of disability. I would encourage your patient and his parents to visit their website. http://www.minnesotalifecollege.com
I hope that this information may help him in some way. Thanks again. Eugene Gallo, Lisbon, Ohio
My son is 4 years old and has p-ACC and microcephaly. He is severly developmentally delayed, no talking, no walking. I try to get my hands on as much research as possible because it seems that the doctors know very little. With each case being so different, it is is hard to know what is in store for my son’s future! I just want more info.
Thanks!
Thanks for sharing
I’d prefer reading in my native language, because my knowledge of your languange is no so well. But it was interesting! Look for some my links:
O6waJN U cool ))
I’d prefer reading in my native language, because my knowledge of your languange is no so well.
My son exhibits similar behavior even down to the posture of Tony. There are so many similarities in behavior and situation, yet I have seen my son on rare occasions respond normally to social situations. I read one comment about autism and anomolies which was interesting as my son was diagnosed with Asbergers. I would like to know what Tony’s dad is doing to improve the situation as I would like to help my son similarly.
I have 2 daughters that have c-acc and was wondering if other families my have 2 or more children with acc
I have a lot to learn about ACC. This condition is now a part of my life and I need as much info about it as possible. Keep up the good work.
I would like to know how to get the book ACC and Me by Lynn Paul. My grandson has ACC and I was told by a friend who’s son also has ACC that it is a wonderful book to have. Can you help me. Linda
Thank you all for your comments!
For Mike Gonzales – yes there are other families who have multiple children with AgCC. Please contact Elliott Sherr, MD at University of California San Francisco for more information.
For Linda Kemp, please contact the NODCC (nodcc@sbcglobal.net) to request a copy of “ACC & Me.”
Best regards to all, Lynn
I thought you had my son on your tv program ! He is 17 and has been diagnoised with add, adhd, and several other things from the time he was 6. My boy, Jean-Luc looks and ACTS almost identical to the person in your story. How do I get a doctor to look at this posibility ?
Fustrated in NM.
I would also love to get a copy of ACC and Me as my son has ACC and it would help us & his school to understand how to help him better. How do I get a copy? Please!!
Hi Dr. Paul,
I have a 6mth old daughter that was diagnosed with partial QCC amongst other brain abnormalities. Is there a particular neurologist you recommend down in Miami? Also I would love a copy of ACC and me. Thank you for all your work. If you should ever need such a small subject please do not hesitate to call. My husband is from Orange Cty and would be willing to visit family.
My son is 7 years old and was born with AgCC. He has also been diagnosed with ADHD, but the medication he is on does not seem to be helping in a lot of areas…mostly social areas. Other than a few MRIs when he was very young, he has never been “studied” and I would be very interested to find out more about how his condition may be affecting him. Please email me if you would be interested in helping me learn more about my son!
I just wanted to clear up a typo! Our last name is Gould (not Goulf) and we are from Ohio!
My son was diagnosed with ACC at birth and all the classic signs and behaviors are present in him. Is there a neurologist in Albuquerque you would recommend? Are there any families or ACC support groups in Albuquerque you may be able to recommend I can contact for information or sharing of experience? Thank you for sharing any info with me.
You can get a copy of ACC and Me when you join the NODCC. Please email info@NODCC.org for more information.
My son was diagnosed AgCC at birth & he will be 10 in August. This program & the nodcc website are fantastic! Being in San Diego, his mother & I would love to find other parents dealing in Southern California with children living with AgCC. Our sons most prominent issues are focusing (mostly on school work) & mirror movements. I will continue to read this post, hopefully we can learn more together!
My son is 6years old and was diagnosed with AgCC when I was 7 months pregnant thru an MRI. They also picked up on communicating hydrocephalus during an ultrasound. He is very imaginative, smart and has excellent motor skills. He has difficulty with transitions from home to school and also displays some behavioral problems at times. Socially, it takes him a long time to warm up to new people and to make friends. He loves to watch Free Willy and Flipper though and dreams of swimming with the dolphins. He is described to be very likable with his teachers and does well with a school routine. He will start Kindergarten this year and is looking forward to attending. Please e-mail me if you have any questions. I am always looking for more information on ACC. He has some traits of Aspergers, but I have read this is commonly misdiagnosed when having ACC.
hey i am 26 years old and i was born without the corpus callosotomy i always new i was born without it but i never really felt any different from any other kids my age i am married and have 1 girl and a boy on the way i finished high school didnt want to go to collage up until about 3 years ago i started questioning myself am i different my body says no while something in my mind says yes i cant put my finger on it yet but i recently suffered head truama while at work and when the doctor came in i could tell something was puzziling him and he ask me have i ever been in any other accident thats when i told him about what i was born without and he gave me the name of it split brain i did some research on my computer and found the utube section on tony i wont to know more about my condition so i could better myself and others like me if i could talk to dr lynn paul it would help me i have a trillion things to ask i would love to help this research please email me back
My son Jack is 7 weeks old and was born with clubfeet so the dotors decided to run other tests. It was thru an MRI scan that they confirmed him as AgCC. We are devastated because for one thing we’d never heard of the condition and we don’t know how it will manifest itself in the future. At the moment he is right on target with his development but he’s so young. Are there signs of developmental problems to look for this early in his life? He tracks us and toys with his eyes, responds to sounds and stimulus etc.
My 4-year old daughter has P-ACC w/ hydrocephalus & is shunted. There is no known cause for one or the other. In some respects she is doing very well. I have a 4 year old self-taught reader! However, we are encountering several emotional/behavioral issues and aren’t sure what’s just Grace being Grace & what’s ACC related. I have not been able to find anyone in Louisiana who is familiar with ACC to give us help & guidence. Do you know of anyone in our region of the US that may be of some help?
My name is Dr.Ayman Gynaecologist, my daughter have delayed development due to Complete Agenesis of Corpus Callosum,now she is 8 years old.I am trying to make Thesis about perinatal diagnosis of Agenesis of Corpus Callosum in the first Trimester and if there is any hope to prevent it
I am interested in learning whether relaxation/hypnotic therapy has been used in cases of ACC, as hypnosis facilitates the switch between left and right brain.
Does anyone have any links?
With thanks
Dr.Lynn Paul
My son Tyron has complete Agenesis of Corpus Callosum. He was also diagnosed with epelepsie. He does not sit, and has infintile spasm. He is 2and a half yrs old now. He makes noises, but does not talk. Will he be able to learn how to sit and walk, because his upper body is weaker, and falls around. I really need sum possitive support. Thank you. Mandie from S.A
Hi,
My 7 year old daughter has complete AGCC and is also Deaf. She has responded very well to ASL so the neurologists suggested she be educated in ASL. She is reading simple books and spelling but is stubborn as a mule has anyone had any experience with this? She is compassionate to others and is able to read facial reactions well.
my son is turning 9 and i am starting to realize some learning problems related to his ACC. I was not the best student in school and often had problems w/ comprehenssion(and spelling), are his troubles related to ACC or is he just growing up to be more like I was? Also I am concerned about when he becomes a teenager. His desicion making process seems off. how do you allow some freedoms as they get older. Should I treat him as a child as he gets older or a young man that will make his own mistakes.
Thank you for this website. My 13-year old son has complete AgCC. He was also born with an interhemispheric cyst, hydrocephalus and other brain anomolies–all a result of the initial ACC? Despite these defects, Michael would be considered high functioning. School has never been a happy place for Michael (now we get it), but not until the last 3 years have we seen a quantifiable decline in his grades. Also, even more difficult, making or keeping friends. He literally stumbled into public middle school very unsure of himself, yet with the goal of making friends; however with his social awkwardness, he tried too hard, and quickly became an easy target among his peer group. With a failed 504 plan, we are now insisting on an IEP, with some recent education and psychological testing now under our belt. Michael has many of the classic executive function and socio-emotional symptoms. We are grateful for this website and others, that we intend to use to get his Education Plan where it needs to be, and also to understand what, and how critical, our part as parents will be for our son.
my nephew had trouble from the very beginning – born with a high palate he was unable to eat and our doctors had us trying all kind of nipples that he could not use – now garrett has a feeding tube and is in physical therapy since 2months old, he also has genitourinary problems where the opening is on the underside of this penis, optic nerve damage, micrognathia (small lower jaw), and is now 7months old but being rated as a 4month old> having trouble finding pediatric neurologist to give us any information other than we know he has neurological disorder – please help find any information
thanks
I am a special education teacher in Saskatoon, Saskatchewan, Canada — I work with a boy who has been recently diagnosed with complete agenisis of the corpus callosum — he is in grade 2; his age-mates are in grade 3 — learning to read is a challenge and I am exploring many possibilities to help him — I am looking for someone who might be interested in doing a research project — any information or names you could provide for me to contact would be greatly appreciated — Arlene Kembel
Hello Arlene
I have a daughter age four with complete ACC. We live in Ontario, and find that there are not many Canadian resources to assist our daughter. I have a son Who has high functioning autism and have had mane successes with IBI. We have used the same approach with our daughter and have had many successes with it. We are also using an Ipad to assist with communication. hope this helps you and others… Good luck with your student.
hi, that’s a nice post. There is some mistakes but the main is here.