6 posts tagged “autism”

Recognizing Autism Awareness Month

Posted April 13th, 2012 by

Click Here to Order Your Own Autism Awareness Puzzle Ribbon (or Postage Stamps!)

Have you seen the awareness ribbon with the puzzle pattern?  It’s the symbol for autism awareness, with the puzzle pieces representing the mystery and complexity of autism spectrum disorders (ASD).  The different colors and shapes also highlight the diversity of families living with this condition, which occurs in 1 in 110 births in the US according to the Autism Society.

April is Autism Awareness Month, so it’s a good time to boost your knowledge of this increasingly prevalent developmental disability (with an alarming 10-17% annual growth).  Over a lifetime, ASD care costs $3.2 million per person.  But the cost of lifelong care can be reduced by two-thirds with early diagnosis and intervention.  That’s why it’s so important for parents to get their child evaluated if they suspect autism.

What should you look for?  Signs of autism typically appear before the age of the three and can include language delays (or the lack of spoken language), repetitive behaviors (e.g. arm-flapping or repeating language), poor eye contact, lack of interest in peer interaction, lack of spontaneous play and a persistent fixation on the parts of objects.

A Snapshot of the Autism Community at PatientsLikeMe

Even though boys are four times more likely to have ASD than girls, PatientsLikeMe’s community of 600 autism patients (some with accounts maintained by caregivers) has a higher number of females, interestingly.  What are they doing to cope?  One of the most commonly reported treatments is occupational therapy (OT), which helps ASD patients overcome daily living challenges. Our OT treatment evaluations share valuable advice and experiences, such as this tip:  “OT through the school is helpful for less appointment making along with being in a familiar environment.”

To learn more about autism, and how you can become an advocate, check out this powerful video made by the father of an autistic daughter.

A Peek at the September Newsletter for Members

Posted September 30th, 2011 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our August edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.


What type of exercise – and how much – is right for your condition?

We all know exercise is a good thing, but if you’re managing a disease, it can be a little trickier to find the right regimen. How much exercise? What type? How often? The answers, of course, are different for everyone, and it can take time and patience if you don’t know where to look. Why not start with patients like you?

A Patient's Walking Treatment Evaluation History

Patients with many different conditions have shared what’s worked and what hasn’t for more than 150 types of exercise. Some of the most common ones include walking, yoga, stretching, aquatic therapy and swimming. How do other members rate these exercises? You can find out in the treatment evaluations. As one member writes, “I have felt less need for pain meds, and I have slept better on the nights I walk.”

Whether you’ve found your ideal routine or are still searching, you may want to become part of an “online buddy system.” For example, subscribe to one of the forum threads on exercise listed below in the “Join the Conversation” section. Can’t find one for your room? Start your own. Let’s get moving together!

Kate, Emma, Liz, Jeanette & Sharry

Kate"" Emma"" Jeanette"" Sharry""


Check out what other patients are saying about exercise in the forum. Then jump in with your own questions and answers. (New members are welcome anytime!)

Need help with something on the site?  Visit the Technical Help Using PatientsLikeMe Room.


Thanks for your continued feedback about improving the site, Here are our top functionality enhancements for September.

There are so many ways to stay connected at PatientsLikeMe – which can be a blessing and a curse sometimes. Recently, we made some major changes to our email and notification system. In addition to fixing reported bugs, we’ve made it easier for you to turn email notifications on/off with the click of a mouse. We’ve also improved the unsubscribe process. Visit your Email Settings page to update your preferences.

Your New Email Settings Page

Wish you could avoid certain forum threads? Consider it done with our new “Hide Topic” button (pictured below). They’re not gone forever if you change your mind, however. Simply go to the “My Hidden Topics” page to find them.

Hide Topics by Clicking This Button

If you’re tired of having to log in when you click a link in a PatientsLikeMe email – such as this monthly newsletter – you’re going to love hearing that you can now log in automatically via verified email. To turn on this time-saving feature, go to your Account Settings page and select “Yes” as shown below.

Click Yes and You'll Never Have to Log In to Click Links in a PatientsLikeMe Email Again

Finally, we’ve introduced a new outcome score for patients with an autism spectrum disorder (ASD) called the Autism Treatment Evaluation Checklist (ATEC). You’ll see that the ATEC score is now displayed in the “puzzle piece” icon in all ASD patient nuggets, as illustrated below.

Autism Patient Nugget with ATEC Score