Sunday, April 24, 2011

IQ Myths in FASD, Part II

In the previous post, I shared research showing that 86% of people diagnosed with an FASD have an IQ in the range of "normal." Nevertheless, people who have an FASD are often described as "cognitively impaired." While IQ is a common measure of "cognition" in the world of the non-exposed, the effects of alcohol on the developing brain can leave intellect relatively intact while still having devastating effects on other areas of brain function.

For example, citing Ann Steissguth's work, Teresa Kellerman wrote: "The academic abilities of individuals with FASD are below their IQ level, and their living skills, communication skills and adaptive behavior levels are even further below IQ levels. For example, a person with FAS with an IQ of 80 may have a reading IQ of 78, a spelling IQ of 75, a math IQ of 70, daily living skills IQ of 68, socialization skills IQ of 65, communication IQ of 62 and adaptive behavior IQ of 60. This indicates that when a person with FAS/FAE is evaluated, a battery of tests be done that include a test of level of functional abilities and daily living skills." (Kellerman, 2003, here)

In Kellerman's example, while an IQ of 80 placed the child in the "typical" range, some of the child's academic skills are borderline (which is 70) and the child's daily living skills and ability to fit into his  changing environment are below that. So IQ alone is not predictive.

But what if Kellerman had chosen for her example an affected child with a higher IQ? It might seem like parents of a child with FASD and an IQ of 110 could take some comfort in the wiggle room between their child's IQ and the lower end of the typical range: any lower sub-scores would have to be significantly discrepant to fall below 70.

That's IQ Myth #2: We can expect better outcomes for exposed kids with higher IQ scores. False. The research shows that children with higher IQ scores may actually struggle more because their intellectual gifts may mask significant deficits in other areas. Teachers and parents expect more of bright students and may fail to see that a child's shortcomings arise from brain damage, chalking them up instead to stubborn will, or to lack of motivation. Children with clearly impaired IQs, by contrast, are more likely to receive developmental disability services and special-ed. They may have  have better outcomes because they generally receive the accommodations they need starting at an earlier age.

Let me give an example. Hope's IQ is well into the normal range. She thinks with creativity and originality. She loves art and important fine-motor skills like her ability to print, color within the lines and use scissors are not impaired. I'm sure she would have done fine academically in Kindergarten and the first few years of elementary school because teachers and parents expect to oversee every child's executive functioning.

In Kindergarten, they place a photo of the child on her locker to show that it is hers. The teacher sends home checklists and assignment sheets (for the few assignment there are); parents help the child complete the assignment, put it back in the backpack and, if the child forgets, puts the backpack on the child going out the door.  Back at school, in Kindergarten the folder is removed from the backpack by the teacher's aide. In First Grade, the child has to turn in the folder. But if she forgets, the teacher sends her back out to her locker to retrieve the folder.

I think you can see where this is going. By second grade, when the photos disappear off the lockers, even finding the locker may be a problem. By third grade, when kids are expected to write down assignments in an assignment notebook that parents are supposed to sign and return, it won't matter if the bright child with FASD was given a notebook on the first day of school. The system hinges on her understanding and being able to comply with the record keeping. But she can't write an assignment in the notebook if she has no idea where it is. Her parents understand the blank pages to mean homework is given only occasionally and are shocked when the teacher sends home a note saying either the child makes up a long list of missing work, or she will fail some subjects this quarter.

Even bright kids, when they have invisible, unaccomodated memory and planning deficits, can start to fail when they reach the age where the system expects more of them than they are able to give. They cannot get the "A" they are capable of if they can't remember an assignment was ever given.

You're probably already thinking of simple things that might be done to help this bright child compensate for her deficits. But you have an advantage: you know there are deficits there being masked by this child's IQ.

That's why part of the diagnostic evaluation for FASD focuses on assessing a child's abilities in ten different brain domains, not just IQ. (This is true in Minnesota, where the ten-domain concept was developed. I don't know if this is yet a national standard.) The Ten Domains are:
  • Achievement
  • Adaptation
  • Attention
  • Cognition
  • Executive Functioning
  • Language
  • Memory
  • Motor
  • Sensory/Soft Neurological
  • Social Communication
(For a more detailed discussion, including definitions of each domain, see Jeannette Lang's 2006 article, "Ten Brain Domains...Parameters for Fetal Alcohol Disorder Diagnosis and Follow Up." Definitions are on page 4.)

As Lang summarizes: "Developing intervention recommendations linked to specific functional CNS deficits [within the ten domains] can maximize the value of the assessment and assist individuals and their families to learn to live with the FASD disability. Hence, the multi-disciplinary diagnostic team of professionals creates the road map for the future rather than just pronounce the diagnosis, utilizing the assessment data as the basis for help." (Lang, 4)

So here's the truth: between Hope's IQ and our misunderstandings about prenatal alcohol exposure, we feel blessed --literally --for the wake-up call last October that led to her diagnosis with an FASD. Now. Not several years from now when things begin getting tougher as her peers begin to mature faster than she does in some critical areas.

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