Key Areas of Need 

 It is helpful to know that someone has a genetic disorder alongside everything else that is known about them.

Why would understanding the genetic cause to intellectual disability be important for an individual?

Over the years some people have said that the fact that someone has a genetic syndrome simply does not matter and we should treat each person as an individual.  There is no doubt that the last part of this statement is absolutely right.  We should certainly treat each person as an individual and acknowledge how someone is similar to other people, the ways they are different, their strengths, their weaknesses and all the other things that make them who we are.

 History reveals times when information about genetics and psychology was misused in order to segregate and oppress people with intellectual disability.  This was most prominent during the Eugenics movement at the start of the last century.  Sadly, discrimination based upon a specific genetic diagnosis can still be identified, albeit to a lesser extent.  One example of this was the decision to withhold heart surgery for some young children with Down syndrome during the 1980’s.  This sort of misuse of information has sometimes encouraged the wholesale rejection of the use of diagnostic labels, including those of syndrome names.  It led to a belief that there is little or no merit in knowing whether or not somebody has a genetic disorder.  This is erroneous.  Whilst it is the case that at times a diagnosis should be irrelevant, just as someone’s gender, ethnicity or sexuality should at times be irrelevant, there is now strong evidence to suggest that the cause of an individual’s intellectual disability can be extremely important in determining and maximising their well being.  

This is not to say that a genetic disorder will determine all aspects of a person’s life.  Rather, it is to say that, at times, it is helpful to know that someone has a genetic disorder alongside everything else that is known about them.  To read a full length article from Cerebra about the importance of understanding the genetic causes of intellectual disability click the link below: 

Adams, Woodcock & Oliver - Is genetic diagnosis important?


Where can I find information on key characteristics and areas of need for genetic syndromes?

To read an overview of key information for each syndrome group choose the group below: 


Angelman syndrome

Cri du Chat syndrome

Cornelia de Lange syndrome

Prader-Willi syndrome

Smith-Magenis syndrome