Down Syndrome Awareness -- "Cognitively Intact" and IQ Testing

"Cognitively Intact" is a term that's thrown around the Down syndrome community like a hot potato.  It's the new "high-functioning".  Parents pronouncing proudly -- like me, not long ago --  that their children with Down syndrome or other disabilities are "cognitively intact".  Preschools in Queens, NY (and other places, I'm sure) actively practicing segregation by automatically disallowing the enrollment of any child that is not "cognitively intact" as indicated by their IQ test scores.  Public schools nationwide trying to abide by the federal FAPE (Fair and Public Education) laws are looking at IQ scores to determine if a child is "cognitively intact" and can, therefore, be included in the LRE (Least Restrictive Environment) better known as a general education setting which has been proven through research to be the most effective place for educating children with disabilities.  For us Moms of kids with Down syndrome, or other potentially cognitive disabilities, the notion that our children's education and future relies heavily on the result of one particular test score -- the IQ -- weighs heavily on our minds as an incredibly detrimental practice for determining educational placement.  Never mind we (and our children) have to live with those inaccurate results and labels for the rest of our lives.

What does it mean to be "cognitively intact" anyway?  A child is assigned this particular label when he demonstrates the ability to grasp age-appropriate concepts generally determined based on scoring in a "normal" range on an intelligence or IQ test. 

Watch out folks I'm climbing up on a VERY BIG soap box right now.....

IQ tests are fallible!  ESPECIALLY for children with special needs.  While I do not discount their potential contribution to understanding where a child scores in relation to others who took the same test, their ability to accurately measure the cognitive abilities -- let alone predict future academic or life success -- for people with disabilities is limited at best and outright inaccurate at worst. These tests are developed and normalized on "typical" populations... NOT on children with disabilities.  Children with any extenuating circumstances, including those who speak English as a 2nd language, those who grow up below the poverty level or those with non-cognitive disabilities including expressive language and/or processing difficulties -- OFTEN do nor score in the "typical" range.  They may well be "cognitively intact" but the tests cannot account for environmental and other factors that have been shown to drive the scores down.  These tests are also developed under the assumption that "typical" language skills exist.  That is, they are heavily reliant on receptive and expressive language skills not only to understand the question but to provide an answer as well.  A child can have the ability to understand the question but if they cannot express the very specific and prescribed answer lingually -- as is the case in a child with Apraxia, for instance -- the "normal range" score will not be reflected. An expressive or spoken language delay is not necessarily about cognition or intellect but these tests cannot account for such issues.  Additionally, IQ tests are timed delivery and response vehicles.   That means a child who has processing delays or attention issues can understand and answer the questions accurately but will not get credit for being "cognitively intact" because he took too long to respond. 

My Boys were considered "cognitively intact" -- performing at the low-end of the "normal" curve -- right up until the IQ test became language-based.  Yes, I fully acknowledge that most "typical" 5-year-old children have a greater command of the English language than My Boys do.  BUT, in addition to Down syndrome, My Boys have also been diagnosed with Apraxia... An oral-motor disorder that has NO cognitive implications whatsoever.  So, while they're generally able to comprehend the question, they're unable to express their answers lingually.  And the test does not allow for responses using sign language, body language, or atypical responses -- such as saying "uh-oh" and "hot" while pointing to the part of the picture in question -- when asked, for instance, what's going on in a picture of a pot boiling over on the stove.  Even their two individual testers acknowledged that they could clearly see that My Big and Little Man understood the question and responded with an appropriate answer, BUT, because it was not the prescribed "correct" answer they could not give them any credit.  Even their school work and teacher evaluations continue to show The Boys' performance to be at the low end of the "normal" curve despite their "failed" IQ scores. 

Here's the hardest thing about the whole IQ Test experience.  I know... I mean I KNOW... about the fallibility of these IQ tests and the fickle assignment of a term like "cognitively intact".  BUT, to be aware that your child is capable of so much more than is reflected in their scores is extraordinarily frustrating ESPECIALLY when their educational future is often, sadly, based on these highly inaccurate scores.  WORSE, I still have to live with IQ scores that show The Boys to be "severely mentally retarded"... a classification that is INACCURATE by all personal and professional accounts.  I am soooooo sorry that I ever consented to these tests in the first place. 

No matter what level of cognitive functioning your child has, these tests consistently under-represent your child's ability.  So what's a parent of a child with Down syndrome or special needs to do?

REFUSE IQ TESTING!  Instead, go with clinical observations and evaluations such as their school performance and evaluations provided by their teachers and therapists.  Though somewhat subjective, these are more accurate predictors of your child's ability to perform in an educational setting and are therefore better measures to help determine future educational placements.  That means your child's future will rely on their past performance instead of being based on the comparison of their performance to "typical" kids.