Wednesday, April 25, 2012

Meet Joe - An Adult with ACC

I am writing on behalf of my son Joe who is 19 years old now. The responses are a collaboration of our combined responses.

When did you find out that you have ACC? How old?

I found out that he had complete ACC at the time of birth. I had complications, but they were unidentifiable until he was actually born, at which time they did a scan of his head. It was then confirmed. I did not actually let Joe know until he was about 15 years old. At the time I was told, there was not much information available regarding ACC. I was told by doctors that there were cases with partial ACC where the child experienced developmental delays and/or seizures. We were at doctors for the first three years testing and looking out for the worst. Thankfully, there was nothing remarkable happening. Nothing that needed immediate medical attention.

What did you struggle with in school?

Joe had problems that were evident in preschool. He was extremely attached to family and expressed no desire to go to school. Once he was enrolled, it was a teacher in first grade that suggested I take him to a public school where there would be more resources to help with his education (he was in a private school). Once I switched him (mid-year), he was tested, but they could not justify additional help. It was not until we moved to a different school district (in 3rd grade), that his teacher identified A.D.D. Joe did not have the hyperactivity that is usually associated with A.D.D, but he was very disorganized. This lasted throughout all of grade school, where turning in schoolwork was the biggest challenge. Once he got to Jr. High, he was placed in an "emotional disorder" class. That was his first opportunity to excel a bit more. Once he went on to H.S. he was also placed into an "emotional disorder" class that helped throughout all four years. Although the schools knew of his ACC, that was never taken into consideration. All help was really based partly on his A.D.D., and associated struggles.               

What did you enjoy most about school?

There was nothing really enjoyable about grade school. He pretty much hated the fact that the teachers were unable to assist him, or understand what he was feeling. In his words, they made him feel as if he were a "stupid, slow kid". The other children bullied him constantly. The better years were in Jr, and H.S. where the teachers were more understanding and motivating. He started to read books, and found interests in reading. He also enjoyed some math.

Did you struggle with social skills in school?

Yes, again, there was nothing enjoyable related to grade school. Socially, even Jr. High was a little tough. It was not until H.S. with a whole new crowd that he was able to make some new friends. Not too many, but due to the fact that Joe is grounded, and that the confidence he has with his family has somewhat transferred, he did better and has managed to keep some friends. Joe also attended church groups, and trips (with the same group of children since 3rd grade), but was not very outgoing. The Pastors and others at the church were instrumental in helping him get out of his shell during the trips. He had no problem bonding with older people, and again with older family members.

Do you struggle today with social skills as an adult?

Joe is not very outgoing. With family and close friends, he is fun and outgoing, but not much past that. He has cared much for grandparents since a young age and was always a favorite for that. He is very comprehending and warm at heart, almost like an old soul, but again, not too much with people his own age.

Did you attend a mainstream classroom?

This was pretty much explained in "school struggles".

Did you receive Special Ed resource help?

To a certain extent, and again, it was most in relation to the A.D.D. Joe took medication from 3rd grade through the end of Freshman year for A.D.D. He also took some anti-anxiety meds for a couple of years, but my feeling is that is was mostly due to the fact that he was having such a difficult time socially. He also had to see a Psychiatrist to dispense the medication, but as he grew older and started coping with the social issues (end of Jr. High and HS), we found no need to continue.

Can you ride a bike or drive a car?

Joe had an extremely difficult time learning to ride a bike. He first could not do it alltogether, but then after he learned, he could not start off. He finally got it at about 15 years old, when he wanted to go out with friends and he felt pressured to learn. As for driving a car, the A.D.D and obsession with driving video games helped out much there. Joe learned how to safely drive a car at 16. He got his license at 17 and has been an excellent driver since.

Did you attend college? Did you get a degree?

Joe was told that he would be able to attend college, but only if he were to just focus on one, maybe two courses per period. Towards the middle of Sr. Year, Joe approached me with the thought of joining the military since he read much on armory (books). At first I was hesitant, but he convinced me. I agreed to him joining, but I had a preference as to the area, or section. Joe was told he had to lose about 40 lbs to make weight and study for the ASVAB (Armed Services Vocational Aptitude Battery). It has been a long struggle, but Joe lost all the weight and studied. However, I think the largest obstacle is fear of being on his own. I would not necessarily say that it is fear of going, but more of not being around family.


I noticed that there is so much now on the internet related to ACC that was not there before. I wish there were more related to adults but some of these stories on here have still given some insight. The main difference is that Joe is otherwise a very healthy individual. His eyesight is better than 20/20 and he loves to run, and weight lift now. He still loves reading on weaponry and volunteers (with adults) at the church service weekly.

We wonder if/what there is anything else to face, or if there are cases that may be more similar to his. He is still very shy with people he does not already know, but working at becoming more outgoing.

Vilma M

I am grateful to Joe and his mother, Vilma, for contributing Joe's personal ACC story and for making it available here on the ACC blog for others to read. Thank you very much Joe and Vilma for taking the time to touch the lives of other people.

Like Joe's mother wrote earlier, I also "wish there were more [information] related to adults" [who have ACC].

It is always very interesting and helpful to read more about adults who have agenesis of the corpus callosum. Their unique input and inside perspective is invaluable.

I am so happy that Joe's mother contacted me and expressed their two-fold desire to tell Joe's Story. 

Joe's mother, Vilma, expressed an interest in hearing from other families who have a grown adult son or daughter with ACC who have similarities with her son, Joe. 

If you would like to contact Vilma, please leave a comment here for her. 

In addition, if you would like to post a note for Joe in regard to his ACC Story, please leave a comment for Joe. 

I know that they would enjoy hearing from you.

If you are an adult who has ACC or a corpus callosum
disorder, do you want to share your story?

Each person is unique. Every story is welcome and
every story is worthy.

I would love to hear from you. Please send me an e-mail


  1. Thank you for sharing your story! My son was born two days ago with C-ACC, so I can't help with your question, but it is really nice to have ideas about what we can expect in the future so thank you!

  2. Nico,

    I wish you the best and hope that the result is at least as Joe's was if not better. There are so many resources available now. God Bless.

  3. Great story thanks, My name is also Joseph, and I was born with complete AgCC. I blog about my struggles and experience living with it (with this blogs's permission I'll post my blog URL) at I'm happy that there is much more info about ACC/AgCC these days than in times past. I was diagnosed as an adult, but have had lifelong socio-emotional and cognitive issues, but my life has improved a lot since learning about my complete agenesis of the CC.


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