Psychological studies into people with CdlS by Professor Chris Oliver and his team from Birmingham University are changing focus.

In a presentation to families at the Cork conference, Chris Oliver told delegates that the issues such as self -injurious behaviour had pretty well been resolved with the links to physical pain from other ailments – particularly reflux.

Now the focus is more on social issues that affect people with CdLS as they get older.

Birmingham is working on several new research projects to look at developments in people with CdLS who they have seen in the past (see separate story).

Professor Oliver said that results in a recent project had shown that something was happening to people with CdLS over the age of 15 as they began mood changes. “It sees they have less pleasure from their lives as they get older, and show more impulsive behaviour,” Professor Oliver said. “We see behaviours that change radically between familiar and unfamiliar. Sociability seems ok with family but not with unfamiliar people.”

From assessing people with CdLS it has been determined that about half of the people with CdLS have autism and another 25% could be considered to be on the autistic spectrum (ASD).

Professor Oliver said young people with the syndrome need more help.

“A gradual and much longer introduction to new ideas over short periods will help. This then becomes routine,” he told delegates.

Parents also need to understand the issue, he said: Unexpected disruptions cause major upset. It is not he or she WON’T adapt, he or she CAN’T, he said. “They are not being stubborn or awkward but they just can’t do it.”