When I was a teen I remember my mother adamantly fighting the school system on IQ testing. She didn’t want my sister April (with DS) labeled “retarded.” She didn’t want an age-equivalent or “mental age”. She believed both would bias the school’s opinion on April’s real ability – and in turn limit her potential to learn.
And now I’m that professional. While I don’t do IQ testing, I assess children with DS, give out scores, age-equivalents, and diagnoses. Many parents, not just my mom, take issue with why clinicians test children with Down syndrome using standardized measures.
There are a number of different standardized assessments, but for ease of discussion I will refer to the Bailey Scale of Infant and Toddler Development, Third Edition. This is the test we (speech, occupational, and physical therapy) give in our clinic when assessing children with Down syndrome from 6 months to 3 1/2 years. I will explore how speech-language pathologists (SLP) use tests to 1.) measure individual growth and 2.) compare children with DS to children without DS who are the same age.
A standardized test allows a clinician to plot milestones like a growth chart.
Just like your pediatrician plots your child’s height and weight, we [medical/educational professionals] are looking for a developmental growth pattern unique to your child. By using the same test at each visit we are able to 1.) measure how your child has developed, 2.) spot holes or milestones missed, and 3.) identify skill regression more quickly than anecdotal (parental observation) reports alone.
Many times parents are excellent at reporting skills. Other times the child has gained skills the parent hasn’t even noticed. For instance, a little girl loves baby dolls. Playing with the SLP she is given a facial tissue and a baby doll. Instead of using it to blow her nose, the little girl covers up the baby and says, “Brrrr.” Her parents look surprised and say, “She’s never done that before!” The little girl just received a point for pretend play because she used a totally unrelated item (tissue) to represent another object (blanket). The SLP documents, “pretend play skills emerging,” and provides more ideas for the family to pretend at home.
In contrast a family may report, “They aren’t talking as much as they used to.” Throughout the assessment the child is taking tentative steps letting go of the physical therapist’s hand. He points to pictures and imitates a few words. When comparing this test to his last one the team realizes he has progressed physically, but not verbally. He has retained skills verbally but hasn’t gained. The team provides the family with education on bridging the verbal gap. Also, the family is reassured that some children focus their energy on achieving one really big milestone (like walking) and temporarily pause another milestone (gaining single words).
A standardized test is one factor used for diagnosis.
Parents have said to our team, “We don’t want to know how he compares to a child with Down syndrome. We want to know how he compares to children his own age.” So, we are able to do this using a standard score and age-equivalents. Some parents feel very differently and that’s okay (I will discuss in the next post). However, to get an accurate diagnosis like “receptive language disorder” insurance companies and schools require comparison to children of the same age usually with a standardized measure (i.e. test). This is because not all children with Down syndrome are delayed talkers…or walkers…or writers. Down syndrome isn’t an automatic “get therapy” diagnosis. It does mean your child is at a higher risk for disorders related to communication and movement, but it doesn’t guarantee it. A standardized test helps us prove there is a need for therapy.
Parent reports are as important as the standardized test.
The information given by parents is invaluable. If your child missed a nap, recently had surgery with anesthesia, or is “not themselves,” it is important to let the team know this. If you know your child can point to pictures in a book, but is tired and “not having it” during the test – let the examiner know. If you’ve recorded this skill on your phone, even better! Children are children, not mini-adults. We don’t expect them to perform consistently and that’s why your input is needed.
Writing this post has me thinking about other comments I’ve heard like, “My child has Down syndrome. Why are you comparing him to a typical child,” or “My child has delays. Tell me something I didn’t already know,” or “If there is a problem is there really anything we can do about it?” These are examples of very real frustrations families have expressed. I will address these in Part II of the series.