Google sent out a call for entries called Project 10100, asking people to submit project ideas that they could invest in, in order to help a large number of people.
The following is one of the project proposals that I submitted.
Your idea's name:
Autism Journal - Needing To Be Heard
Please select a category that best describes your idea.
Community: How can we help connect people, build communities and protect unique cultures?
Opportunity: How can we help people better provide for themselves and their families?
Energy: How can we help move the world toward safe, clean, inexpensive energy?
Environment: How can we help promote a cleaner and more sustainable global ecosystem?
Health: How can we help individuals lead longer, healthier lives?
Education: How can we help more people get more access to better education?
Shelter: How can we help ensure that everyone has a safe place to live?
Everything else: Sometimes the best ideas don't fit into any category at all.
What one sentence best describes your idea?
An online autism journal, where everyone who works with an autistic child can record their interactions and observations...which can then be tracked over time.
Describe your idea in more depth.
A lot of people have interactions with an autistic child on a daily basis. Parents, grandparents, friends, teachers, sitters, caregivers -- all spend time (whether one-on-one or in a group) with this child, and all have personal observations on how this child behaves.
NTBH is a system where each of these people can quickly and easily record these observations, which can later be analyzed to see what progress, if any, is happening with the child. The system will be designed to scale information so the lack of data, or inconsistent observations, will not impact the results.
In addition to the journal database, NTBH.org will be a clearinghouse for links and resources related to anything about autism. Because most autism websites have specific agendas or beliefs, NTBH will be an agnostic forum for members to discuss any and everything related to treatments, therapies, or prevention.
What problem or issue does your idea address?
Once a parent finds out that their child falls within the autism spectrum, they immediately start looking for therapies and possible ways to help their child understand how to communicate with the outside world and eventually be able to socialize with others. Because there are so many different types of therapies (and people believe in so many different and contradictory causes and therapies) it makes it difficult for them to sift through all of the conflicting information. This system would help them evaluate and organically evolve the therapies they use, by showing them rates of behavioral improvement over time. Additionally, it helps support and encourage these parents when they are able to see that their child has surmounted a hurdle or made progress in interacting with others.
If your idea were to become a reality, who would benefit the most and how?
About five years ago, I worked with a school for autistic children. While I was there, I designed an initial version of this journal (based on ideas from other teachers and parents). The parents were very excited about the possibilities of this database/journal and are still using a similar system using Microsoft Access.
These parents were using the system to see how their child improved over time (for example, suppressing repetitive behaviors, or making eye contact more often). The problem with someone having a personal journal or local database is that they can't benefit from how other parents are using a similar system. An ASP model (with clear privacy protections) would allow them to feel secure in the use of the system, but be able to take advantage of improvements made based on feedback from other parents.
What are the initial steps required to get this idea off the ground
A prototype of the journal (as well as the public-facing site) will be created and soft-launched. A local autistic support group with 10-12 children would be the initial user-base. This will help in the initial collection and processing of data, as well as the design of reports using real-world data. Eye-tracking usability studies will also be used to evaluate performance and usability.
After the alpha test, the site will be updated with design and functionality changes, and then it will be launched in beta. Marketing will be done locally at first, to keep the number of users manageable and allow for additional testing. An active user forum will collect and manage user requests.
Then, after three months of active beta participation, the site will be launched nationally. Data will continue to be evaluated and the system will continue to be enhanced and evolved based on user feedback and usage statistics.
Describe the optimal outcome should your idea be selected and successfully implemented. How would you measure it?
The primary measurement is usage statistics -- how many people are registered users, and how often do they use the system on a daily/weekly basis (as well as how many users are using it concurrently). However, once the system is in full production and is being used across the nation, there will be able to be reports generated that show trends of parents using certain therapies (obviously, with all personal information removed). This information will be able to show success statistics of different therapies, as well as rates of progress for specific tasks or interactions.
Based on the results of this system, this method of journaling (in a database-driven, numerically focused way) can be then re-purposed into systems for tracking and reporting other, non-autism-related developmental problems.
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