1. We all agreed that it is a problem
  2. Feel we need one umbrella term to describe the diagnosis and then the different presentations. E.g. like diabetes, arthritis, autism – one term but different variations
  3. We don’t feel we have the right or the expertise to know what that term is but we would like to be consulted in the process.
  4. It’s historically been complicated and unwise to introduce a new term in these situations.
  5. ‘Disorders of the corpus callosum’ was preferred by members present at the meeting. They felt the brain was not typically formed as it should have been and that didn’t mean that it extended to the person.
  6. The adults present didn’t not find that offensive and offered to survey other adults for feedback. They felt that their brain did have a disorder but that didn’t mean they were defective people. Can separate the 2.
  7. It’s unscientific to describe it as brain ‘difference.’ The brain has not formed as it should so disorder is more correct. (It’s like using ‘differently abled,’ which those present objected to)
  8. We know that some groups cling strongly to older terms such as ACC to describe everything – because of tradition, registers for insurance etc but it is a misnomer and exclusive to some presentations. When floated with some international groups, people were annoyed at the suggestion of changing.
  9. We don’t want to appear to be arrogant in our approach and we respect the professionalism and long term commitment of our researchers and clinicians.
  10. Adults who have the condition need to have genuine input into the final decision.
  11. Dysgenesis adds another unfamiliar word and is not clear enough in describing it for wide usage.

*Discussion points for meeting with Linda Richards and Pieta Shakes.

  • Linda agrees that it is a problem but has had difficulties when raising it with global researchers. There are some internal politics involved.
  • Pieta raised the issue of not being able to diagnose in utero with an umbrella term of what was actually happening.
  • Linda explained that there are many genetic causes now but she didn’t feel that breaking off into little subgroups for such a good idea. We need to be united by the fact that it is a Corpus Callosum issue for everyone.