Sunday, February 10, 2008

Research Finds Families of Kids with Autism Try Five Simultaneous Treatments on Average

Parents of children with autism spectrum disorder don't try just one thing to help their children: they tackle multiple approaches, research from the Interactive Autism Network shows.

On average, children with autism undergo five simultaneous treatments, according to preliminary data published last month. The data comes from surveys filled out by more than 4,000 families.

As you will note from the list of most common treatments below, researchers define the term "treatment" broadly: it can mean services delivered by educators, therapists and medical prescription; special diet; treatment can also mean social stories, which use pictures and symbols as well as words to tell kids with autism what to expect on a family outing, dentist visit or other situation; social skills groups; and weighted blankets or vests.

The Most Common Approaches

Based on the survey data, the most common treatments are listed below:

1. Speech and language therapy
2. Occupational therapy
3. Applied Behavior Analysis (ABA)
4. Social skills groups
5. Picture Exchange Communication System (PECS)
6. Sensory integration therapy
7. Visual Schedules
8. Physical therapy
9. Social stories
10. Casein-free diet
11. Gluten-free diet
12. Weighted blanket or vest
13. Risperdal
14. Melatonin
15. Probiotics

What the Researchers Notice So Far

The list above accounts for more than half of the treatments that families filling out the surveys list, though researchers emphasize that they have to do a lot more analysis of their data to get a clearer picture of what's going on. See a public notice about the research here.

In fact, trying to get a clearer picture of what's going on is a main thrust of this project. The researchers note:

Hundreds of autism treatments are currently in use. In many cases, there is little or no scientific evidence to support their effectiveness. Parents of children with ASD, driven to help their children and knowing time is of the essence, are unable to wait for answers. They find themselves making all sorts of choices and trying all sorts of remedies, often in the absence of adequate information.

So many parents have gone through this: researching, agonizing, choosing, evaluating, dropping treatments, adding treatments... and trying to find a combination that keeps their child stable, healthy, present, and able to learn and grow. Most would agree that going through this process is a nightmare.

Parents need answers. Too many have participated, unwillingly, in the great autism treatment experiment. By collecting data on families' treatment experiences, IAN hopes to contribute to the effort to identify effective treatments, as well as to guide decision-makers prioritizing which not-yet-proven treatments to study.

That last note suggests that these researchers are seeking to apply some rigor to understanding parents' testimonies about what they see happening with their children—what works and what doesn't—so they can influence research directions in the future.

As for this survey sample, the researchers note that thousands of survey respondents reported that their kids are taking vitamins, minerals and prescription drugs. More specific data about this and other findings are due to be released at an unspecified future date.

Who is the Interactive Autism Network?

The Interactive Autism Network is a web-based project of the Kennedy Krieger Institute, a research and educational organization in Baltimore that specializes in developmental disabilities including autism spectrum disorders. The organization received funding from Autism Speaks, the major nonprofit group, to start the project in January 2006.

1 comment:

Erica said...

Great post on IAN. Hope you don't mind I Shared it via Twitter. I am on the Kennedy Krieger online outreach team.

In light of the Autism Treatment Acceleration Act, I wanted to introduce myself. Your blog is great. I especially like the Autism Schools Map Project you started.

Interactive Autism Network, or IAN, as you know, has a great deal of stats to provide additional context to U.S. autism policy.

Here is one link for state-by-state statistics:

Also, the IAN just launched a program to enroll adults. As of right now, the CDC doesn’t have any official estimates on cases.

If I can help connect you with the Director of IAN for additional insight or a quick email Q&A, just let me know.

Thanks for your time!