2 posts tagged “Asperger’s syndrome”

Scoring with ATEC on PatientsLikeMe: New Feature for Patients with Autism

Posted August 30th, 2011 by

When we expanded PatientsLikeMe from serving a couple dozen conditions to serving several hundred overnight, we realized very quickly that our work was only just beginning. Since that early morning in April, our members (and staff) have added a lot more data to the system, including core symptom groups and commonly prescribed treatment surveys for hundreds of conditions. Last week, we added a new outcome score for Autism Spectrum Disorder (ASD), a rapidly growing population in our community.

ATEC Screenshot

Now, all patients with an Autism Spectrum Disorder (including Asperger’s Syndrome or PDD-NOS) have the ATEC outcome score available on their profile. The ATEC (or Autism Treatment Evaluation Checklist) is a survey developed by the Autism Research Institute to help parents of children with autism record communication, sociability, sensory awareness and behavior.

The saying goes, “if you’ve met one child with autism, you’ve met one child with autism.” Given the heterogeneous nature of the condition, it’s extremely difficult to find two similar patients with autism. That said, on PatientsLikeMe, patients and caregivers can find and connect with others based on a number of criteria, including age and location, individual symptom scores, treatments taken and now an ATEC score that relates to overall level of function.

Below is a screencast featuring the ATEC and the new patient “nugget” for members with an Autism Spectrum Disorder (as well as changes we made to our QuickStart Guide for caregivers).

By receiving scores for each individual component of the ATEC, you can choose which areas you should explicitly target in therapy. We encourage all of our members managing an Autism Spectrum Disorder to take the ATEC to find out more about your condition and how you can improve your outcomes.


Calling All Families Affected by Autism

Posted June 28th, 2011 by

Back in April, we wrote a blog post observing Autism Awareness Month. At that time, we had just over 100 members with an autism spectrum disorder (ASD). Now, just two months later, we’re pleased to report that our ASD membership has more than tripled with over 350 members reporting ASD and nearly 100 reporting Asperger’s syndrome.

Do you know someone who has a child with ASD? Currently, patients under the age of 20 comprise the largest segment of our ASD patient membership. As a result, we’ve created a leaflet for parents of children with ASD that explains the benefits of joining PatientsLikeMe as a parent/caregiver.

Click on the leaflet image below for a full-size, printable version:

Leaflet for Parents of Children with ASD (Click for a Full-size, Printable Version.)

Imagine the knowledge and support you could gain from finding other children like your child – or other parents like you. Because when you connect with others like you, you can learn what’s normal. You can see how other families are approaching treatment. Most importantly, you can discuss ASD challenges with people that truly understand.

We look forward to the continued growth of our ASD membership. If you know a family affected by ASD, please pass along this leaflet today.