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Calls to Action

IAN Research Findings: Treatment Data

January 16, 2008


The Interactive Autism Network (IAN), a project collecting information online from families of children with autism spectrum disorders (ASDs) from throughout the United States, reports on treatments. How many autism treatments are families using at once, and what do these tend to be? What are the most popular treatments? The IAN Project hopes the collective experience of individual families can guide research priorities.

IAN is a web project of the Kennedy Krieger Institute sponsored by Autism Speaks.

Please Note: These Findings Are Preliminary
The analyses presented here by the Interactive Autism Network are preliminary. They are based on information submitted over the Internet by parents of children with autism spectrum disorders (ASDs) from the United States who choose to participate. The data have not been peer-reviewed -- that is, undergone evaluation by researchers expert in a particular field -- or been submitted for publication. IAN views participating families as research partners, and shares such preliminary information to thank them and demonstrate the importance of their ongoing involvement.

We encourage autism researchers investigating these topics to apply for access to the IAN database. Contact

researchteam@ianproject.org.



Autism Treatments: The Great Experiment

Dozens, if not 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 … 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.


IAN: Tracking Treatments Families Are Using Now

Families participating in IAN Research have the opportunity to list all autism treatments they use, and to rate these. They also can note how much each treatment cost, and whether they had to go to extraordinary lengths to get it. Did they have to switch schools or doctors? Drive more than 100 miles? Enroll in a research study? Take legal action?

We still have a great deal of data to analyze, but we now present the basic information collected so far.

The average number of simultaneous treatments that children with ASD participating in IAN receive is five, although more than half receive four or fewer. (See Figure 1.) About 5% of children currently receive no treatment at all, while others receive dozens. (The child with the most concurrent treatments is on 56!)


Figure 1.
number of treatments


The most common treatments used by IAN families are listed in Table 1. These treatments, taken all together, account for more than 50% of the treatments that families list.

Table 1. Top Individual Treatments Used by IAN Families

Rank

Treatment

1

Speech and Language Therapy

2

Occupational Therapy (OT)

3

Applied Behavioral Analysis (ABA)

4

Social Skills Groups

5

Picture Exchange Communication System (PECS)

6

Sensory Integration Therapy

7

Visual Schedules

8

Physical Therapy (PT)

9

Social Stories

10

Casein-free Diet

11

Gluten-free Diet

12

Weighted Blanket or Vest

13

Risperdal

14

Melatonin

15

Probiotics

A different picture emerges, however, if you group treatments into distinct types. For example, there are 4,373 instances of children taking individual vitamins, minerals, or other supplements, and 2,692 instances of children taking individual medications. While only Risperdal – representing medications – and Melatonin and Probiotics – representing vitamins, minerals, and supplements – appear on the above list, both categories are huge when you group all medications or all vitamins, minerals, or supplements together. What complicates matters, of course, is that many children are taking more than one. We will report in more detail on specific categories of treatment in future issues, breaking down what types of medications or supplements are being used, and how many children are taking one or more.

In addition, IAN will continue to collect data on treatments from families at regular intervals. What may be of most interest to researchers is what treatments families rate highly over time, and what treatments, having yielded disappointing results, are dropped.



To Share Your Thoughts About These Findings


If you have comments and insights about these preliminary findings, please share them in the research-focused IAN Community Discussion Forum under “IAN Research Findings” and then under “Treatments – Jan. 2008.”(http://www.iancommunity.org/cs/discussion) Your feedback may influence future research.

(Any member of the public may view these discussions, but to post you must join IAN Community. Go to http://www.iancommunity.org and click “JOIN NOW.”)

What is IAN?
The primary goal of the Interactive Autism Network (IAN) is to accelerate the pace of autism research. Families affected by autism answer questionnaires over the internet, from the comfort of home. Researchers apply to IAN to use the resulting data, or to find participants for their local studies. The IAN Community (http://www.iancommunity.org/ ), meanwhile, provides evidence-based basic information on Autism Spectrum Disorders, articles by leading researchers in the field, and reports on IAN's latest findings.

To learn more about the IAN Project, please go to http://www.ianproject.org/.
To join the IAN research project, please go to IANresearch.org.