Sunday, January 9, 2011

Adults with ACC Discuss Social Challenges

When the corpus callosum is missing, partially missing or
small and thinner than normal, there can be a variety of
possible effects.

One effect that many people who have Agenesis of the
Corpus Callosum (both kids and adults) struggle with
is social skills and the ability to engage in
conversation and socialize easily with others.

Recently a social skills plea for help, from an adult
who has partial agenesis of the corpus callosum, appeared
in an ACC support group that I belong to.

With the adult's permission, I am able to share it here
with you.

A 20-year-old adult with partial Agenesis of the Corpus
Callosum writes:

"Is anyone else out there having major socialising difficulties?
knowing what to say, how to say things and when to say things,
when you are with any people, any time of the day, everyday?
I do. Does anyone have any tactics, training tips they can

After 20 years of it i am getting desprate, now that Im supposed to
be an adult and all. Please help me if you can. Thankyou"

Cassie, also a 20-year-old adult, who has complete
Agenesis of the Corpus Callosum responded:

"I also have troubles with social questions. When I was in
highschool my best friend realized my struggles
( I wasnt laughing at the jokes, etc). She came up
with the idea that when we were out together she
would tell me when a joke was going to be said and
when we were out in a group if I missed something
she would explain to me wat it was I missed and tell
me if it was a sarcastic or literal remark. She would
also kinda give me a nodd when it was appropriate to
say something. fter three years of "coaching" I was
able to get most social questions. I still have difficulty
of when to say things. My biggest issue is coming up
with wat I want to say and the rest of the group is
already 3 topics ahead. In my class right now is a
Professer who likes to tease and it is part of her
personality. So when she is about to tease me she will
give me a wink so I know that its coming.
So,my advice: if you have a really close friend
that you can talk to set up a system so that you
can interact. Eventually you should be able to get
some or most of the social questions."

The adult with partial ACC who posted the original
question replies to Cassie:

"That friend sounds like one in a million Cas. One of my
major issues is that i dont have a close friend or a group
of close friends who I talk to about any of my difficulties,
because they don't understand because they too have their
own social problems. So I'm a bit stuck on the friendship
front. =( I have tried sooo many different settings to try
and make friends but havnt found them yet."

Many parents who have a child with Agenesis of the Corpus
Callosum (or a corpus callosum disorder) understand and can
relate to the difficulties with social skills, making and
keeping a friend or friends, engaging in conversation,
knowing what to say and when to say something and
social interaction with their child's peers that
were expressed by the adult who has partial ACC.

What can you do to help facilitate social skills for someone
who has agenesis of the corpus a question that
is asked often by both parents of a child with ACC and some
adults who have ACC.

The corpus callosum is colored in red in the picture above.

The corpus callosum is the largest commissural pathway in
the brain consisting of over 200 million nerve fibers and
allows for communication between the two hemispheres of
the brain. It is the largest single structure in the brain.

Lynn K. Paul, Ph.D. is the founding past President of the
National Organization for Disorders of the Corpus Callosum
and she is also the head of the Corpus Callosum Research
Program at California Institute of Technology (Caltech).

In her 2003 Conference lecture handout Dr. Lynn Paul
together with Janiece Turnbull wrote the following:

"ACC and Adolescence

Around age 12 and through adolescence, the corpus callosum of typical children becomes more efficient and effecive - this results in
the greater complexity of thought, emotion, and relationship that
becomes possible during our teen years

When the corpus callosum is absent or malformed, it is possible that a child who has been developmentally "typical" may begin to lag behind as his or her peers increasingly depend on their corpus callosums

Or if a child with a callosal disorder has been somewhat delayed, the increased social expectations of teenagers may make the child's delays even more obvious"

The quoted information can be found in the 2003 Conference
handout below:

Adolescence and Social Issues in ACC
by Lynn K. Paul, Ph.D. and Janiece Turnbull, Ph.D.

Dr. Lynn Paul appears in the video below and talks about
social skills, ACC and the corpus callosum. More
specifically she says:

"As children our corpus callosum is not completely developed.

It becomes more functional particularly around age 10, 11, 12.
And if you think about what happens for kids around 10, 11, 12,
everything is about social issues, everything is about who said
what about whom, everything is about all that interaction.
Where your typical kids are cruising along and your AgCC kids
are cruising along fairly similarly; suddenly the corpus callosum
start to develop of those typical kids, their social processing
and problem solving and abstract thinking skyrockets very quickly
and our kids don't."

youtube ACC video documentary:

--Dr. Paul's quote is heard at 8:12 in the video--

The California Institute of Technology, currently involved in a Corpus Callosum Research Program states on their website:

"Research indicates that even those individuals with AgCC who function very well have subtle difficulties in social and executive skills that may impact their daily lives."

The California Institute of Technology website also states:

"The impact of AgCC may become more evident as a child reaches puberty. In a typical brain, corpus callosum functioning becomes much more efficient around ages 10-12, as the callosum mylenates. As the corpus callosum becomes increasingly functional in their typically developing peers, children with AgCC often appear to fall behind. Particular areas of difficulty are social understanding, social communication, comprehension of non-literal language (for example vocal inflection and proverbs), problem solving, executive skills (for example organization, flexibility in response to change, and planning), emotion recognition in others, self-awareness and personal insight. People with AgCC may appear somewhat rigid in their interests and socially simple. In this sense, AgCC symptoms may "get worse" with age ... however, often these individuals learn coping skills well into adulthood, so they may also "get somewhat better" with age eventually."

When a child has agenesis of the corpus callosum the
importance of teaching social skills and looking for
opportunities to help the child engage in social interaction
with their peers should begin as early as possible.

Some kids who have ACC receive a weekly social skills class
at school led by a school psychologist and speech therapist.
The use of social stories, guidance, opportunities and
practice interacting socially with their peers in different
social situations, having a lot of repetition, receiving
encouragement and becoming confident in themselves can be
very helpful.

If your child has an Individualized Education Plan (IEP) in
school, social skills goals should be written directly into
your child's IEP along with their academic goals, keeping in
the back of your mind that as they get older and reach the
ages of 10, 11 and 12 you may see a greater need for new
social skills goals and mentorship help in the school, home
and community settings.


1. Getting back to the plea for help (from the adult who has
ACC) for socializing tips and ideas...what types of
intervention can you suggest?

2. What specific methods have you used for your child who
has ACC that are helping them learn social skills and helping
to improve interaction with their peers and encourage
making a friend?

3. What types of social skills goals does your child, who has
ACC, have in their IEP?


  1. Hi Everyone,
    What is an IEP???
    I don't remember it from 1960's.

  2. My daughter with hypoplasia of the CC ("extremely thin") has lots of social issues. We homeschool, which helps. She goes to occupational therapy, where they address some things. I try to make sure that I or a trusted adult are involved in all of her outside classes and activities and I address these issues with teachers if I will not be in the class (church coir, etc.). I've found that most of her social issues are very close to those experienced by people with autism--difficulties getting the hang of personal space, tone of voice, aggressive stance when she doesn't mean to be aggressive, black/white reasoning (there is no "gray area" with her), random conversations, etc. She has befriended a girl with Asperger's at a homeschool group and that's gone well--they're both a little quirky, so they get along just fine and the other mom and I have enjoyed having someone "in the know" to talk to. At therapy, she fits in well with another girl who has autism. I hope to continue working on the social-skills issues as I know this issue will only deepen as her peers hit puberty. I look forward to seeing what information you get in the comments!

  3. Vance,

    It is my understanding that the IEP began in 1997. So an IEP was not around in the 1960s when you were in school and that is why you don't remember it.

    An IEP is short for an Individual Education Plan.

    A child who has a disability must qualify and meet eligiblity requirements before they can have an IEP in school.

    An IEP is a document that contains written goals, therapy services and accommodations that a child needs in school to help address their specific learning needs. Each child's IEP will be different and will have written goals that meet the special learning needs of the child.

    Teachers have to follow the written goals that are in a child's IEP.

    For example: if a child with ACC is not able to take their test and finish it because the time limit is not enough time for them to be able to understand and process the information as quickly, then the IEP can be written to accommodate the child so that they are allowed to have additional time to finish their test. This is just one example of the many accommodations that can be written into a child's IEP.

    An IEP can be used for children with a disability who are in mainstream (regular) classes or children who are in special education classrooms.

    If you have any questions please let me know.


  4. Carrie,

    Thank you very much for taking the time to comment and share information about your daughter who has hypoplasia of the corpus callosum and the social challenges she deals with.

    I think it is so helpful to connect with other people who understand and who can relate to ACC and the social challenges and get their input and insight. The networking and exchange of information shared is so helpful to so many people.

    Like you, I welcome and very much look forward to reading more comments from other people.

  5. Social skills are very important, as well as something that may not get enough attention in the flurry of action around medical and academic issues.

    I will reply to question #3. This is what we've done with our daughter who has partial ACC to help her develop social skills. We didn't work on social skills as such, but on opportunities to have meaningful relationships with others. Because this was often difficult with peers, we often looked beyond.

    1. Look out for natural relationships and develop them. Don't place too much emphasis on the sex, age, or social status of the friend. If the friend comes from a questionable background, have him or her
    to your house instead of the other way around.

    2. Participate in multi-age groups.
    Our favorite was 4-H, where kids can be different ages and even working on different projects within a club, and can mentor one another. Groups like this provide support for our kids, as well as giving them leadership opportunities when they become the older ones.

    3. Encourage relationships with adults outside the family. In our case, it was largely through volunteer work with a dog rescue group.

    4. Whenever possible, be involved in the peer activities, as a leader, assistant, or even fly on the wall. Or have another trusted individual (adult, or maybe an older child, sibling, neighbor, etc.) fill this position for you. In our case I was a Sunday School teacher, T-ball coach, 4-H leader, car pool driver, and drama club
    gofer. In such a position you can monitor what is going on with peer relationships and offer appropriate advice or run interference.

    5. Make the family as rock solid as possible. Do things as a family. (Everyone went to her brother's soccer games when possible, as well as to her piano recitals. Sometimes the family is all you have.

  6. In the 20 years of your life what is the funist thing you enjoy doing???
    Baking,sewing,cooking,gardening etc.,this hobby could be an ice breaker for you.
    Don't let fear be a road block for you !!!!!!!
    I like to be alone too,but I have to eat,I need a hair cut,I need a pair of pants>Solution you have to ask for help.
    Life is a process step by step and there will always be people around to help.Just ask.

  7. I like food. Working with food, watching food and eating food. Apart from that the only real hobbies I have are the computer and certain TV series's. Not really sure what to do about my interests because I can't seem to stick at anything for long or do it regularly enough. Often I do not ask for help or say anything because I am not even sure what it is that I need or how to explain it. I can say that I have a fear of things, but no one can do anything about that. Thanks for the questions. They made me think. =)

  8. Another thought came to mind we have a great tool here. Sandie has made it possible for us to be Social by expressing our thoughts and views on her topics.
    She all so uses the ACC- List Serv. !!!
    It would be great if all 100 of us could chit-chat.
    Remember be courtous and kind and have fun and TRY IT.

  9. Girl In The Little Black Dress,
    What is your fears,and how do you know people can't help you. Try us.

  10. I have Asperger and i am of the conviction that at least Asperger but perhaps all of Autism is caused by issues with the Corpus Callosum. The similarities are just to evident.

    Just in that the CC isn't really structurally different as in agenesis, but just wired in a different way whilst retaining its overall structure.

  11. I have a question .....does any of of adult acc drive cars get married have kids I know kinda off subject but I do have a don w pacc jus wondering what kinda future in that area for him I know about everything else I've research for years now but never asked those questions thanks:)

  12. Hi Anonymous (from Jan 23,2012),

    Thank you for your comment. I hope that your son who has ACC is doing very well. I'm not sure how old your son is.

    Because each person who has ACC can be affected differently and because there is a very broad range of affects of ACC, predicting the future of a person is difficult and instead becomes more of a wait and see process.

    Please know that while there are some adults with ACC who may not learn to drive, and who may not marry or have kids...Yes, there ARE definitely some adults with ACC who learn to drive, who marry and who have children.

    I'm not sure if you are aware of the Adults with ACC stories. If you are interested in reading more about adults who have ACC (written from their personal perspective), you can view them below:

  13. My daughter, now 24, was diagnosed 2 days after birth. She began having seizures around 15months old. At that point we were attending every Neurology appointment and the question was always, "how is she doing, any seizures?" and that was the extent. Her school years were difficult. Every year I would explain the condition to her teachers and inevitably they would call me every week, complaining about her lack of focus. Never once was an IEP mentioned and I had no idea what one was. Now, as an adult and mother of 2, her struggles are even more apparent. She can not organize things and she finds problem solving impossible. My heart aches for her and my grandchildren. Please give us some advise.

    1. My daughter is also 24. She was diagnosed at birth as well. She has a 4 year old baby and I wish I could find help for her. It seems like a lot of people understand the problems, but no one has any answers or solutions to problems. My daughter is very easily manipulated by others and she always ends up hanging out with people that want to use her for one reason or another.

  14. I am am a 32 year old male who was only diagnosed with complete ACC when I was 28/29, after encountering my first ever seizure. I had no special ed. as a child, only displayed all the typical signs of the condition that I of course at the time, could not label.
    I completed all my schooling, and college degrees I intended on getting, and only now am truly trying to understand how to proceed with my life.
    My employment situation has always been changing (I currently work full-time, but have not achieved getting a stable permanent job yet) and my social life is very limited. (I have discovered that my "online" social life through several musician "fan boards" does keep my free time occupied, though) I have a loving family, but only one real stable friend. I have only had one relationship that lasted a few months, but am actively looking to find someone new, and in that process am constantly feeling at odds with myself when I suddenly realize I do not have the "social ability" necessary to achieve what I want. I often have to wonder if there is any point in "trying to hard" to achieve a simple conversation. Does anyone with ACC here have advice on how to communicate in a dating environment? How soon is it advisable to disclose to a date about ACC? I did early on in my last relationship and she treated me poorly and as if I has autism

  15. I have a friend who is 58 years old, has struggled with addiction for his entire life, and was just diagnosed with AgCC. I do not know specifics of the disgnosis, but it does explain many of my friend's social struggles. He says he has always felt different, that he doesn't "get" having a conversation. Almost 60 years ago, diagnosis of this condition must have been rare. Do you have any information about adults who have been diagnosed later in life? Does the frequency of addictive behavior seem like an obvious result of an undiagnosed condition?

  16. Hello "Anonymous" from March 23, 2013:

    Thank you for your comment. Your friend who was recently diagnosed with AgCC is very lucky to have such a caring, concerned friend. You can read several Adults with ACC stories at the link below - (some of the adults were diagnosed with AgCC later in life).

    Adults with ACC Stories

    I'm not sure exactly what type of addiction (i.e. drugs, alcohol, other substance, addictive behavior) that you mention your friend has struggled with for his entire life.

    In my own research about AgCC over the past 19 years, as well as contact with parents of children with ACC and adults who have AgCC, struggling with addiction is not a common problem.

    However, there are some people with AgCC who sometimes might also experience Obsessive Compulsive Disorder (OCD) behaviors to varying degrees.

    If you have any questions or if you would like more information about Agenesis of the Corpus Callosum, please e-mail me.

    I hope that your 58 year old friend is doing well and is receiving the support that he may need.


  17. I have an adult 22 Year old who has ACC.. he will not talk to people he does not know.. he is mean to those he does know.. he did fine till he hit 13 and then Down hill from there. He will not find a job too "SHY" and all he does is sit around and play video games.. My son will not show me affection or anyone else for that matter.. I see many signs of a Narcissist as well .. he has always been very emotional ( CRYING ) temper tantrums.. now he is SILENT

  18. I am 52 with hypoplasticity of the c.c. I have latent nystagmus and am very Aspergerish. However, I am married with a child and "came out" today to my workplace so that I can get reasonable accommodations. And I can drive. I don't drive in busy or unfamiliar cities because of limited vision. Besides the nystagmus, I have very poor vision out of my left eye. My right eye does all the work.

  19. My stepdaughter is 16 and was diagnosed at birth with ACC. I met her when she was 9 years old and honestly I would not have known there was a problem had I not been told of it, she seemed completely normal. As she has aged, she has had problems being able to take a joke or understanding when someone was sarcastic and within the past year she has had one of her teachers tell her she seems to be depressed so now she is on anti-depressants. In the past year she has started to have more and more physical ailments, such as she was having hip pain and when she went to the doctor they recommended therapy after an MRI showed her hip socket to be abnormal. The physical therapist said she lacked any muscle tone. Now she has knee pain, which the doctor said was a sprain (from unknown cause) which has her in an immobilizer and on crutches. Has anyone else experienced anything similar? I'm concerned with how she is going to be able to function as an adult due to her awkwardness, but now am starting to be concerned with physical impairments as well as this is the third issue to be diagnosed within the past year. Looking for any suggestions to help her succeed.

  20. 2 years ago i was diagnosed with ACC, im 40 years old now and never knew i was missing it. i was never in need of an MRI until a scare a reaction to meds that made my head in severe pain. the doctor came called it an anomaly, he was shocked i knew what it see, i have a daughter born with Complete ACC, who is now 12, she was behind in development until age 3 when she got really sick and ended up with the pneumonia that was killing kids back then. after that period she started to show normal development, they think that new path ways developed in her. this in fact is the unusual thing, my daughter is in the upper % as if she doesnt have any part missing and is in fact very smart. she was reading before age 4, back wards and forwards. she had seizers til age 3 as well as a condition that still crops up called selective sight (like she is looking through a person as if they don't exist)she panics easily and that the only indication of her problem now. they say she may change as she gets into other situations, but so far so good. i'm a sociable person always have been depending on the subject matter and so is my daughter, but only in certain situations like school, church and work place where its a consistent controlled environment, we are both multi-functioning creative individuals. however, most time we are loners at home even in our creativity, we also don't flow with the rest of the families interests. we do our own thing and not much in groups. the interesting part is that we are both severely emotional in many areas of our life. we both have issues with major headaches and our stress level is short. but we compensate with creativity and we both hate silence. sound has to be around us no matter what in order to function. people are shocked we have such a condition. my parents realized if we had known sooner my educational issues may have changed. ( i was in special ed most of my school life) i have battles depression, anxiety most of my life. i was a military brat for 20 years moving 17 times my first 21 years so my environment constantly changed. now i have lived in the same place for 17 years and i compensate with my many projects to keep my mind going. i guess what i'm saying is with us, we handle our condition and surroundings in social situations based on what our mind can handle and our interests being our main focus to function. we both love escaping in art and crafts, music (listen and sing), anime, comics, writing, martial arts, computer related projects, people say she is a mirror image of me. once i found out i had the same as her. i wasn't as fearful of her future. i know how to help her, where my parents did not.


I am very interested in reading your comments and
look forward to hearing from you. Thank you.