Some Commonly Asked Questions
Why was Autism360 created?
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.
What are the benefits of using Autism360?
There are three major benefits of using Autism360:
- It is a tool that enables parents to create and share with medical and other professionals dynamic reports describing their children 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.
Who should use this site?
Parents or caretakers of kids affected by autism, individuals on the Spectrum 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 or their children's 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.
While the majority of Autism360’s users are parents of children affected by autism, adults on the Spectrum are also encouraged to use the site. Simply create a profile for yourself and start enjoying the benefits Autism360 has to offer.
What am I expected to do?
Take a few minutes to explore the site and become familiar with the options for creating an accurate detailed record that portrays your child on the Spectrum as an individual. That portrayal should consist of serious, mysterious, vexing, curious and even so-called minor items, including strengths, that capture your child's individuality and therefore helps practitioners using the record to see beyond the diagnostic label.
How much information do I need to enter?
There is no set amount of data that need to be entered. However, the model requires that you enter at least 15 profile items, including one strength, for the individual on the Spectrum. 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 child's records.
How long will it take to enter my child’s data?
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. It should only take 10 to 15 minutes to enter the minimum 15 profile items, including 1 strength, to access Others Like Me. Beyond that, the amount of time you spend will be determined by the volume of your child’s information you would like to store in Autism360.
Do I have to enter all my child’s data at once?
No, you do not. We recognize that you might not have much discretionary time. You can enter your child’s data over many sittings, however, the cluster analysis will not work until you have entered 15 profile items, including one strength.
Can someone see my child’s profile?
Your child’s record is password protected and is anonymous so that your child’s data cannot be traced to you or your child as an individual. You may share your child’s record by revealing your password to a heath care practitioner or therapist and you may change your password to restore your privacy.
How does the clustering or matching work?
The details of each feature of your child’s medical history are captured and stored in a multidimensional system. For example, a severe itchy rash on your child’s hand is stored using 4 dimensions: Severe, Hand, Skin, and Itch. This multidimensional method of coding data allows Autism360 to use a statistical technique called dot-product proximity analysis to compare and match the profiles of all individuals recorded in Autism360.
What if there is no one in my child’s cluster?
You may enlarge or narrow your selection of others in your child’s 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 for your child 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.
How often do I need to enter my child’s data?
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 your child’s story.How often do I need to enter my child’s data?
Is there a cost to use the site?
There is currently no cost to use the site. In the future, if we do not have sufficient philanthropic funding, we may need to charge users a nominal fee.
Why didn't I get my activation email?
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.
Can I track more than one person with a single account?
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.Can I track more than one person with a single account?
How can I help support the work of Autism360? How do I make a donation?
Autism360 is sustained by charitable contributions. Your tax-deductible donation will help a community of families affected by autism and also further much needed research into previously invisible patterns within the Autism Spectrum. Any amount is greatly appreciated.
Autism360 is a not-for-profit 501(c)(3) organization (Fed ID: 27-12025040). Please select the “Homepage” tab located at the top left of the page then click on the “Donate Now” button to donate securely on-line.
For whom am I creating a record on Autism360?
The individual affected by autism.