Change Your Expectation, Change the Outcome

There is a wide range of functional outcomes in children with cerebral palsy (CP) or brachial plexus injury (BPI). Traditional medical wisdom attributes this variation to the extent of injury. It seems reasonable to think that the children with a poor outcome are the ones with the worst trauma. But this correlation is far from perfect. It is my belief that parental expectations are also an important factor. This statement would not cause any difficulty if it was applied to the performance of a young athlete. Very few teens reach the higher levels of sport without the help and support of their families. But questions are raised when the same principles are applied to children with an early neurological injury. Why? The short answer is that for these children, the brain or nerve damage is always considered the key determining factor. This leads to the belief that the end functional level is largely predetermined. This is a common belief, but it is wrong-headed.

How much variation is there in a given neurological diagnosis? It is hard to be precise in CP or BPI without extensive testing which is hard to do in the baby or young child. If we want to examine the question of the influence of parental expectations, we should look at a group of children with the same neurological diagnosis. Down Syndrome is a chromosomal disorder that has a major impact on intelligence. When I was in paediatric training, at the Hospital for Sick Children in Toronto, Canada, I was taught that the mean IQ level of children with Down Syndrome was 30 to 50, compared to a normal IQ level of 100. Not much was expected in terms of improvement and it was routine practice to place affected children in institutions or nursing homes. These children had very little opportunity for activity dependent neuroplasticity and their outcome was dismal. Little was expected and little help was provided. Over the last 30+ years, the chromosomal defect has not changed, but the outcomes for most children with Down Syndrome have improved dramatically.

The following link is one of many studies that have shown that early intervention can significantly change both intellectual and motor skills. http://www.physicaltherapyjournal.com/content/64/10/1515.short

Overall, the prognosis for intelligence is now given as a range of IQ’s from 44 to 77 and 60 to 70% of adults with Down Syndrome have some employment. There are active research programs with the goals of further improving the outcomes in this formerly “hopeless” group of children. See.. http://www.ds-int.org/home

Most of these changes have been accomplished by parents who did not accept the “common medical wisdom”. I have discussed in other posts on this site, the sad reality that cerebral palsy is still considered by many to be a permanent brain injury and expectations for recovery are low. However, if you search for it, there is some evidence that the low expectations advised by some doctors may be harmful. A paper that has not received sufficient attention is “The Prediction of Long-term Functional Outcomes of Children with Cerebral Palsy” published in Developmental Medicine and Child Neurology in 1995. O’Grady et al reconnected with 117 of 810 individuals who had been diagnosed with CP between 1951 and 1974. The investigators reviewed the original medical charts which contained a prediction of the ultimate employability of the interviewed cohort. The authors concluded that “…pessimistic functional assessments made in childhood were proved erroneous by interviewees exceeding their prognostic expectations.” They warned that “Labelling a child with CP as non-functional in one or more categories may necessarily destroy hope, determination and a sense of accomplishment.” Athletes understand the concept that expectations and performance are related.

“You have to expect things of yourself before you can do them.”
Michael Jordan

It is time for all of us to raise our expectations for children with early neurological problems. Neuroplasticity is not just for rats. The established fact that human brains are able to grow and develop throughout life means that there really is no scientific justification, in most children, for jumping to an early conclusion about their ultimate function. The challenge of human neuroplasticity is to learn how to harness the potential to improve the outcome. The parents of children with Down Syndrome are searching for a cure and their success in fundraising and innovative research is far ahead of similar work in the CP or BPI groups. Could the observation that low expectations invariably leads to low results also applies to fundraising and research funds allocation?

Further readings:
Connolly BH, Morgan S, Russell FF, Evaluation of children with Down syndrome who participated in an early intervention program. Second follow-up study. Phys Ther. 1984;64(10):1515-1519.
O’Grady R, Crain LS, Kohn J, The prediction of long-term functional outcomes of children with cerebral palsy. Dev Med Child Neurol. 1995;37(11):997-1005.

See Also
How Smart Is Your Child?
What Does Your Doctor Believe?
How Doctors Think by Jerome Groopman, MD