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Autism360 was created to help adults and children with autism by providing an invention that permits the management of complex data while keeping the focus on the individual more so than the disease name. Sidney M. Baker MD began work in 1969 on a project based on a recognition that information technology could be used to handle the details of medical narrative in a new way rather than simply using computers to automate the status quo. Medicine's focus on a person's diagnosis has been based on linear thinking about acute illness in which the name and the cause of a person's problems are a more or less accurate representation of reality when we speak of having a cold, chicken pox or a broken arm. What Dr. Baker has called "Name-it, Blame-it and Tame-it Prescription Pad medicine" has many limitations in the management of chronic illness where a systems biology approach to understanding cause and healing is more appropriate than linear thinking.
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There are three major benefits of using Autism360:
- It is a tool that enables parents or individuals to create and share with medical and other professionals dynamic reports describing their children or themselves as individuals.
- Based on continually growing data from the collective experience of closely matching others it identifies treatment options.
- It uses information technology as a "macroscope" to help see otherwise invisible patterns on which to base research regarding cause and treatment.
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Parents, individuals and practitioners are encouraged to use the site for their own needs to have accurate, detailed, structured data to help drive decisions based on options presented by the experience of others. All users may have a secondary motive to provide a gift of their experience to the global autism community and particularly to individuals who may benefit from finding actionable options for treatment as well as relief from the loneliness that often goes with the realization that the label "autism" applies to lots of individuals who do not closely resemble our self or our child.
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Take a few minutes to explore the site and become familiar with the options for creating an accurate detailed record that portrays your self or your child in the Spectrum as an individual. That portrayal should consist of serious, mysterious, vexing, curious and even so-called minor items plus at least one strength that capture ones individuality and therefore helps practitioners using the record to see beyond the diagnostic label.
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There is no set amount of data that need to be entered. However, the model requires that you enter at least 15 profile items and one strength (the power of 16). Beyond that, the level of detail and volume of information depends on your assessment of what you need to present to doctors and others with whom you share your records.
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The length of time depends entirely on how much information you wish to enter and the amount of time you have to devote to this task. You need not hurry. You are creating a record that will have enduring value to you and to professionals to whom you wish to present your self or your child as a complete individual with a complex combination of problems and strengths.
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No, you do not. We recognize that you might not have much discretionary time. You can enter the data over many sittings, however, the cluster analysis will not be meaningful until you have entered 15 profile items and one strength.
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Your record is password protected and is anonymous so that your data cannot be traced to you as an individual. You may share your record by revealing your password to a heath care practitioner or therapist and you may change your password to restore your privacy.
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The details describing symptoms, exposures, and other features of your medical narrative are coded as you enter them into a multidimensional "space" in which the intersections of defining dimensions express the meaning of the data. For example a severe itchy rash on your hand lies at the intersection of 4 dimensions: Severe, Hand, Skin, and Itch. We create a vector from each data point. A statistical technique, dot-product proximity analysis, is used to match the collective data of individuals who become neighbors in the virtual space of our system.
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You may enlarge or narrow your selection of others in you cluster to obtain more or less "company" in our data. As our number of users grows it will become highly unlikely that you would find no company unless your description is limited to features that are highly unusual. We are very interested in "outliers." That is why we encourage users to enter descriptions that include features that may have nothing to do with "making a diagnosis" of autism. As noted in Dr. Baker's introductory video, individuals with very unusual symptoms or reactions may find particular value in the system by having access to even a few others like themselves.
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It is entirely up to you. Memory is very important when it comes to piecing together a puzzle whose pieces may appear separately over time when even a few changes have been made or observed. So the idea is to capture changes when they occur and let Autism360 bail you out of confusion when you wish to look back and reconstruct the story.
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There is currently no cost to use the site due to the generous support of the Moody's Foundation. In the future, if we do not have sufficient philanthropic funding, we may need to charge users a nominal fee.
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Please check your spam. If it isn't there, please report the problem by clicking the "Contact Us" link at the top of the page.
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Currently the site only supports one person per account. If you have two children (for example) that you want to track, it is necessary to create two different logins, with distinct email addresses. There are a variety of free web-based email services available, and many people use these email accounts for their secondary logins.
If you have a question we haven't answered, please let us know...