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
share?



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 callosum...is 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.

QUESTIONS:

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?