Current IQ tests that are being used on people with Down Syndrome are simply not able to provide enough data to provide a clear picture of the function of a student with DS. These tests are, however, able to show that the student with DS is not typically developing. Other than that, accurate measures are impossible to gather from standard IQ tests. This is why someone with DS at 5 years old scores as being mild and then when they are older score as moderate. In other words it appears as though their IQ has gone down with age,which is not the case. IQ scores should not change that much for an individual. When testing typical children you would not see changes in IQ scores like you do when re-testing people with DS.
New Test Specific to Down syndrome
There is a new test that is being developed at the University of Arizona by Edgin and Nadel, that is specifically designed to measure fundamental learning and memory skills (flexibility, memory, planning) of a person with Down syndrome. Development of this test was born out of the need for researchers to have a tool to accurately measure functionality in people with DS so that changes before and after an experimental treatment of some sort such as medication or therapy could be accurately measured. We can’t rely exclusively on anecdotal observations in the world of research, we needed new tests that show whether changes occured in an area of the brain when reporting study findings.
The new test (which is still being tweaked and not currently being used by schools) is able to focus on the parts of the brain that have been identified as most impacted by DS. This way researchers get a much more accurate picture of functionality.
What is the take away?
Don’t get too attached to IQ scores your child has been given by standard IQ tests. Researchers have determined that current IQ testing practices were not able to measure people with DS accurately, which is why a new one is being developed. The schools will want to measure IQ to determine the student qualifies for services, so let them test, as this is something they need to do, but don’t put too much value on the results.
Every few years schools ask you if you want your child to be re-evaluated as part of the IEP process. This happened to Lily. I asked the team what they hoped to learn from the test. I mentioned that we knew she had DS and was delayed. Was there anything else we needed from that test? The teachers had been working with her and knew where she stood academically…. My team determined that there was no sense in giving her another IQ test. Why put her through it?
Those of you worried about the score as it pertains to inclusion, no worries. Inclusion has NOTHING to do with funcationality. It’s about being with typical peers. Sometimes this point needs to be brought up at meetings, but most special education teachers should be aware of this philosophy.
Final Thoughts on IQ testing kids with Down syndrome
The child with DS is who he is regardless of what any test shows….. For example, if your child scores a 55 will you love him less? Is he all of a sudden not able to learn? NO. It’s just a score from an inaccurate test. There is no need to get emotional about this score, it’s just a tool that is currently used to show that people with DS have intellectual disabilities and need services. Don’t over-think it or allow it to be more than it is. No worries.