Recently I had the privilege of taking about smartphone support for special needs adults for the Down Syndrome Association of Minnesota. As a speaker I could attend the conference for free, including a talk by a psychologist, Dennis McGuire.
I don’t have a child with Down Syndrome (John Langdon Down’s syndrome has become Down Syndrome) but #1’s IQ is in the typical Down Syndrome range. So I was curious how much of Dr McGuire’s talk applied to my son. I decided about 80% or so — even though #1’s temperament is very different from the Down Syndrome athletes I know from Special Olympics and Minnesota Special Hockey. I suspect that overlap is primarily a result of cognitive disability rather than something unique to Down Syndrome (Trisomy 21). (By way of reference #2 is classic autism spectrum disorder but has a normal college range IQ. This list would not apply to him.)
For the parent of a child with a cognitive disability this is valuable stuff. I thought nobody studied these behaviors — but it turns out they are studied in Down Syndrome. We’ve figured most of it out by now, but it would have been good to have had this list 8 years ago.
From my notes …
- Often do better with written word than spoken word, even if reading level grade 2.* This includes texting.
- A minor misfortune that a neurotypical might quickly forget may produce a strong aversion or phobia. These can be lasting and may be very hard or impossible to verbalize. Re-exposure to the context or even attempts to describe it may reproduce the emotional response (PTSD-like)*. They may result in quitting a job that had been going well or dropping a favorite activity. These can sometimes be addressed over a period of a year or so — if the root cause can be determined.
- It is common to make poor word or phrase choices — perhaps for lack of a range of phrases. “Kill that SOB” for “I’m really made at him”. Some will response to a (written) list of alternative and more acceptable phrasings.
- “Self-talk”, monologues with gestures and dialog, are common ways to process events. They may include imaginary friends. They may be mistaken for psychotic delusions. Person with Down syndrome often need training to understand self-talk should be done in a private space.
- When doing “self-talk” may act out roles — consistent with a fondness for theater.
- “Stuck groove” - McGuire's name for repetitive behaviors with a compulsive aspect. Topics and phrases that must be repeated many times with minor variations. Arranging a desk to be “just so”.
- A preference for ordered environments and routines. “Stubborn” is the “S word" in the Down Syndrome community.
- A resistance to being hurried or made to move quickly — “slow” and “slower”. (FWIW #1 does not do this, but my #2 (autism) does. I’ve seen this a bit in special hockey, but I’ve also seen Down skaters race for the puck.
- Anger as a common response to not understanding, feeling pushed.
- Reactive “No” when asked if want to do something long desired.
- Strong orientation to place — often very good sense of direction.
- Love of food and food places.
- Strong visual memory but poor at time sequencing. May speak of things in present tense that occurred years ago. May have difficulty with timing of routines — not able to manage “15 minute” guide for shower.
I’ll ask my Down parents whether they think this list will be helpful in coaching our Down skaters. I know it would be helpful for managing my #1.
* Dr McGuire ascribed the asterisk items to a strong visual memory, even “photographic” at times. That seems plausible, but I don’t know if there are MRI studies to go with it.