How to Determine if a Treatment Really Helped
Written by Stephen M. Edelson, Ph.D.
Center for the Study of Autism, Salem, Oregon
There are many types of interventions available today for autistic individuals, including nutritional, biomedical, educational, sensory, and behavioral. When beginning a new inter-vention, it is important to be as objective as possible to determine whether the treatment truly helped the person. If the treatment is not helping, then it does not make sense to continue it especially if it involves a great deal of time, money, or effort.
When deciding to try a new treatment, whether â€˜provenâ€™ or not, here are a few tips to help determine whether the person may have improved from the specific treatment:
1. When a parent begins to learn about all of the various treatments given to autistic children, he/she sometimes tries many at once in order to see improvement as soon as possible. However, if the child improves after receiving several treatments, it will be impossible to determine which one(s) really made a difference. A general rule is to try a treatment for about two months before beginning a new one, to determine whether or not the treatment was helpful. However, if it is quite clear that the child improved from a treatment, even after a week or two, then another treatment can be started.
2. Parents should consider completing the Autism Treatment Evaluation Checklist (ATEC) monthly for a few months prior to the intervention and then monthly following the intervention. The ATEC was designed specially to evaluate treatment effectiveness. If improvement occurs due to maturation, then one typically sees gradual improvement over time. However, if there is a sharp improvement after the intervention is started, then the treatment may be helping. There is no charge for use of the ATEC. You can complete the checklist on the Internet at: www.autism.com/atec or obtain a hardcopy of the checklist by writing to the Autism Research Institute (4182 Adams Ave., San Diego, CA 92116; fax: 619-563-6840).
3. If at all possible, tell no one when a child starts a new treatment. This includes teachers, friends, neighbors, and relatives. If there is a noteworthy change in the child, it is likely that the people who come in contact with the child will say something about the improvement. It is also a good idea not to ask â€œHave you noticed any changes in my child?â€ In this way, any spontaneous statements regarding the childâ€™s improvement will be credible.
4. People who do know that the child received a specific treatment can, independently, compile a list of what changes they have noticed in the child. After a month or two, you can compare their observations. If similar changes are observed by different people, then there is a reasonable chance that these changes are real. It is important they these observations be written down; otherwise, when appropriate behaviors replace inappropriate ones, you may not remember what the childâ€™s behavior was like before the treatment, especially if the behavior was an undesirable one.
5. Parents and others should note in writing when the childâ€™s behavior â€˜surprisesâ€™ them. Basically, parents usually know how their child will respond in various situations; and once in a while, their child may do something that is unexpected. If a child improves soon after an intervention is begun, one can assume that the child will act differently than before; and his/her behavior will likely lead to more â€˜surprisesâ€™ than usual-hopefully good ones!
Some people suggest that parents should give their children only treatments for which there is ample research evidence to support their effectiveness. However, when a relatively new treatment is introduced, there will likely be a limited amount of research, if any, on its effectiveness. It takes, on average, 5 to 10 years to complete enough research to support or refute an interventionâ€™s efficacy. Additionally, chances are fairly good that even after 10 years, the results will be mixed, because researchers often use different populations and assess changes using different measures. Be leery of any treatment if it has been around for ten or more years, and there are no research studies to support its effectiveness. For example, Ritalin is one of the most frequently prescribed treatments for autism, but we are not aware of any published studies supporting its effectiveness with this population.
Before trying a new treatment, learn as much as possible about the treatment. Rather than just focusing on positive reports, it is also important to seek out criticisms of the treatment. When evaluating conflicting claims, look to the nature of the studies and their methodologies–poorly conducted studies should not be given the same credence as methodologically sound research.
It is important to keep in mind that no treatment will help everyone with autism. Although one child may have improved dramatically from a certain treatment, another child, even with similar characteristics, may not benefit from the same treatment. Careful observation along with a critical perspective will allow parents and others to decide whether or not a treatment is truly beneficial.
I would like to thank Dr. Bernard Rimland for his constructive comments on an earlier draft of this article.