The GPS Project
Is Hypogranularity the Key?

Could it be that a Thousand Points of Light
is a Thousand Too Many?

If So, What Can We Do About It?

Summary

Who is This Project Designed to Help?

The Goals of this Project

How We Intend to Proceed

To Succeed We Need Your Help

Summary

The goals of this project are to understand what trips up the brains of those with visual/spatial and numerical processing problems and, armed with that knowledge, to develop better ways to help people with these problems find “the other way round.”

It seems that people with visual/spatial and numeric processing problems have minds that short out when confronted with too much busy-ness. These are the people for whom a thousand points of light (or anything else) is a thousand points too many. We need to understand what the busy-ness blockade in the mind is about and then figure out how best to get around it.

To achieve these goals, Sarah’s Place will fund research that uses the latest brain imaging techniques, including diffusion tensor imaging and function MRI, as well as sensitive neuropsychological measures to enhance and clarify the nature of what it is that is tripping up those who have trouble with visual/spatial information and numbers and leads to more effective ways around this neurological stumbling block.

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Who is This Project Designed to Help? The GPS Family

The population of people who have a primary deficit in the visual/spatial/numeric processing domain is huge because it includes people in many different diagnostic categories. Why? Well, apparently the brain goes wrong in just so many ways and problems in the visual/spatial/numeric domain is one of the most common, and maybe the most common, of those ways. And yet, pervasive as this processing problem is, it has received so little attention that it lacks a proper name. One cannot possibly go around saying “processing problems in the visual/spatial/numeric domain.” So we call it GPS, [underline means: link to page on What GPS is], much easier on the ear, eye and tongue.

Who is included in the GPS family? All those with any of the following diagnoses:

• Nonverbal Learning Disorder

• Chromosome 22q 11.2 Deletion

• Williams Syndrome

• Turner Syndrome

• Fragile X

Many of those with the following diagnoses:

• Attention Deficit Disorder

• Pre-mutation Fragile X (those with more replications of the CGG sequence than normal but not enough to be classified as having Fragile X)

• Spina Bifida

And some number of people in each of the following diagnostic categories: Asperger’s Syndrome, Agoraphobia, Dyslexia and Obsessive-Compulsive Disorder.

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The Goals of this Project

This project, the first major research project to be undertaken by Sarah’s Place, is dedicated to solving two problems: what is the underlying processing difficulty (or difficulties); and how best to work around it.

Consider blindness: it can be caused by any number of things, all quite different. And, while knowing what causes blindness is important to prevention and treatment, at least as important is understanding what it means to be blind. We know that. We can close our eyes, walk around a bit and extrapolate from there. If we didn't understand what blindness meant, we couldn't help blind people manage the world we can see and they cannot. We might forever be saying useless things like, "When I can't see, I turn on more lights or squint; try that."

Unlike blindness, we do not have a similar way of understanding what the "it" is with people who have difficulty processing visual or spatial information or numbers. If one can process numbers and space, one cannot just turn off that ability and imagine what it's like not to be able to do it. Unless we know more clearly what the underlying difficulty is, we cannot hope to intervene with great success. We will forever be saying things as ineffective as “squint” to one devoid of sight.

Sarah’s Place will fund a major research project to crack the GPS nut. Our aim is to enhance understanding of what stops certain people from processing space, visual information and numbers as “normal” folks do, so we can develop better methods of helping those in the GPS family to find “the other way round” their processing difficulties.

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How We Intend to Proceed: Building on Promising Leads

Some steps, promising but small, have already been taken toward answering the fundamental questions at the heart of this project. At the M.I.N.D. Institute at the University of California Davis Medical Center, Dr. Tony Simon [link to Simon’s page at the M.I.N.D. Institute] is conducting research across four genetic disorders that share the GPS characteristics of a primary deficit in the visual/spatial and numeric domain. His work combines cutting edge brain imaging techniques and creative neuropsychological measures, but it is limited to a small corner of the GPS family. It does not touch, for example, those with Nonverbal Learning Disorder or Spina Bifida or Premutation Fragile X or any of the others who share the same primary processing deficit as those now being studied.

We propose to change that, to broaden this kind of cross-disorder, cutting-edge, research and to use what we learn to develop more effective methods of helping people work around their difficulties.

What might we learn from this kind of cross-disorder research that makes use of new brain imaging techniques and creative new neuropsychological measures? First, a better understanding of what the problem is and is not. Is it the same problem in all disorders or are there subtle or big differences? This is important not just to yield a better understanding of how the brain works, but it is critical for developing more effective interventions.

Second, we hope to learn more about what part, or system within, the brain is causing the numerical and visual spatial processing difficulties. Is it one system that goes awry? In all the disorders? Or are there many parts and systems in play? What strengths do these brains seem to have, strengths that might suggest novel ways of circumventing the weaknesses?

Third, we hope to also include within this project, not just “normal” controls, but also a set of people gifted at processing numbers and space, and we hope that some of those gifted folks will be people who suffer from other non-GPS learning disabilities, e.g., some people with severe neurological impairments are gifted in the numerical and/or visual/spatial domain. By including the “gifted,” we may find they use strategies not employed by “normal” folks, but that might be adopted by those with GPS (and “normal” folks too).

The ongoing research has already yielded some promising clues about both the underlying difficulty and the routes around it. As to the first question, "what is the ‘it,’" i.e., the core of the processing difficulty, Dr. Simon research thus far suggests the key is "granularity." If you know something about digital cameras, the more pixels, the more detailed the picture. What seems at the core of the number processing/visual-spatial problem in the four disorders he is currently studying seems to be a marked inability to deal with fine gradations, with the details, with too many pixels. One question we have is whether this feature is limited to these four genetic disorders or is present in others with different genetic disorders, with non-genetic based processing difficulties (or disorders whose genetic cause is not yet known). Another question is whether the number-gifted demonstrate an ease with extreme granularity or are they more similar in this domain to the norm, which would suggest some other feature is more important to their exceptional number and visual-spatial facility, a feature that might be tapped by those with GPS.

The ongoing research has also yielded some promising insights into the features of the brain that are likely responsible for the deficits. In brain-talk, the results thus far suggest that it is a white matter problem (connections within the brain), not a gray matter problem (the basic building material of the brain). And that’s good news; it is better for something to be a white matter problem if we are talking about ways around the difficulty. But we do not now have any proof that it is a white matter problem for those outside the four genetic disorders currently being studied or whether "giftedness" is also primarily a white matter phenomenon.

Finally, the data collected thus far suggests another avenue to pursue. Some data suggests that a certain structure in the brain (the corpus callosum, which connects the right and left hemispheres) is different in the brains of the people now under study than it is in the "normal" population. Interestingly, this structure is also often affected in those with spina bifida. Studying the brains of others with GPS and the number-gifted may clarify the role of this structure in number/visual-spatial processing and perhaps even identify this structure as a marker that might be used to allow early diagnosis and thus early intervention.

Sarah’s Place intends to grant money to qualified researchers at institutions with the following characteristics:

• clear capacity to deal with whatever subgroup population that institution undertakes to study, which means first-rate support services to ensure that all research participants and their families are treated with sensitivity and dignity

• access to and expertise with the latest brain imaging equipment and techniques

• demonstrated creativity in the development of neuropsychological measures that help us better understand the nature of neuro-cognitive processing

• demonstrated creativity in the development of effective methods of helping people with learning disabilities to achieve their full potential

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To Succeed We Need Your Help

If we are to achieve our goals, we need your help. By joining together all those in the GPS family, we add to our strength and our resources, Together we can do this, but everyone has to pitch in and help.

The population of people this project is dedicated to helping is enormous. Enormous and neglected. `In the vast NIH budget for research into health problems in this country, you can barely find a line item for research devoted to visual, spatial, or numeric processing difficulties.

The government funding simply is not there. The scientific research that is needed is intricate and painstaking. The newest technology offering the best methods for studying the brain, tensor morphometry and functional MRI’s, for example, are expensive to use. Help us help others: DONATE NOW.

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