70 is the number. An IQ of under 70 is the score that historically has been used to define “mental retardation” or what we now refer to as “mentally handicapped” and is the number (plus or minus 3-5 points) currently used to determine eligibility for certain adult services where we live. There has been much controversy around the issue of determining services based solely on this number. I admit I am not up on all the issues as I tend to operate on a need-to-know basis when I get freaked out. It is a strategy that works for me.
When Riley was first diagnosed with autism back in 1999 just before his 5th birthday, I went through the whole gamut of emotions. Reading all the assessment reports was overwhelming. Back then we did not have a number although the words “mildly mentally handicapped” were mentioned a LOT along with “significantly below average performance” and “a severe delay in the development of comprehension skills”. Fourteen years later seeing those words is not any easier. Back then I chose to focus on the positive comments like “teachable little boy” or “displayed a developing sense of humour” and in his most recent assessment “delightful young man who is eager and works hard”.
It is a number which although describes Riley’s cognitive/academic abilities does not describe what he can do or who he is. Some individuals with extremely high IQ’s may be unable to function on a daily basis due to a variety of limitations in other areas of major life activities. Conversely some individuals with lower IQ’s, with proper supports, are able to function and live independently. So what does the number mean for us?
In the DSM-IV (page 43; paragraph 318.0) Moderate Intellectual Disabilities is described, in part, as follows:
"Most of the individuals with this level of Mental Retardation acquire communication skills during early childhood years. They profit from vocational training and, with moderate supervision, can attend to their personal care. They can also benefit from training in social and occupational skills but are unlikely to progress beyond the second-grade level in academic subjects. They may learn to travel independently in familiar places. During adolescence, their difficulties in recognizing social conventions may interfere in peer relationships. In their adult years, the majority are able to perform unskilled or semi-skilled work under supervision in sheltered workshops or in the general workforce. They adapt well to life in the community, usually in supervised settings."
Yup...I would say that is a fairly accurate description in R's case. In Riley’s latest assessment report (September 2012) it was written: “He has well developed rote skills and is able to read words and spell within the low end of the average range.” and “…so much potential and sparks (good rote skills).” Low end of the average range. That statement? Music to my ears. There is so much more to these assessments than just a “score”. There are so many other factors that I do not have the knowledge or expertise to explain so I won’t even try.
So where does that leave us? For some individuals like Riley the number is not a concrete number. His wide range of abilities make it difficult to assign a single number as his IQ. Overall his number is somewhere between 45-53. While this number was a little disheartening to hear, I needed to keep reminding myself that it was indeed only a number. The number does not define who Riley is or where he will be in the future. So we will keep plugging away as we enter this next stage of Riley World.
In the meantime I will file away Riley’s latest report with all the others and only bring it out when I need to. For now the waters are calm and we are getting ready to celebrate Riley's graduation from high school in June. Pretty sure I will be in the fetal position cowering under the bed by the end of July.