What to Do When Autism Treatments Don't Work

A grandmother who is very concerned about twins on the autism spectrum notes:

In addition to the school and medical attention the children receive, they are also getting therapy that's somehow related to the work of B.F. Skinner. I think the procedure is called ABA. When I spent some time with my daughter this summer the person involved with this procedure told my daughter [the twins] did "awesome." When I asked her what her level of "awesome" was, she told me they sat for the 45-minute session although with no response. Now this is after months of work.

Of course, this grandmother is referring to Applied Behavior Analysis, a well-researched and well-respected treatment for autism. The fact that the technique is well-respected, however, does not mean that all ABA therapists are created alike, or that all children will respond well to ABA.

If a parent sees that their child with autism is not responding to ABA (or any other treatment), but the therapist (or teacher) insists that all is well, it may be time to consider a change in therapist -- and/or a change in therapy. A few questions to ask include:

• What are your goals for my child, and may I see them in writing?
• How do you assess improvement? May I see your assessments?
• If a technique is not working well, how do you adjust your approach to suit the needs of my individual child?
• Have you tried complementary techniques to support my child's learning and communication? For example, if a child is non-verbal, is your therapist using picture exchange cards (PECS), keyboards, or other augmentative communication devices?
• How do you reinforce positive behaviors and/or improvements? Do you simply hand my child a bit of food, or are you able to show approval in a way that really means something to my child?
• How do you plan to help my child generalize what he learns through therapy? If he can only say "button" when you hand him a button and he earns a candy for speaking, he's unlikely to be able to use the word in a naturalistic setting.

If your child's therapist or teacher can't give you good responses to these questions, or refuses to show you goals and assessments, it's time to take action. If therapy takes place in a public school setting, it may be appropriate to call an IEP meeting. If the therapy is private or in an out-of-school setting, it may be time to call the therapist's supervisor, provide a written list of concerns, and insist upon a timely response.

If, after going through appropriate channels, you get no action -- it's time to move on. Even if you decide to take legal action against your school or therapist, there is no need to sit on your hands relative to your child's treatment. Many forms of therapy are available even if you choose not to experiment with biomedical interventions. Your child might respond more quickly and more fully to a developmental therapy or in another setting.

_Sources:

Bibby P., et al. 2002. Progress and outcomes for children with autism receiving parent-managed intensive interventions. Res Dev Disabil. 23(1):81-104.

Interview with Dr. Jim Partington, owner and director of Behavior Analysts Inc. in California. Ph.D. and BCBA. February, 2008.

Mace FC, Mauro BC, Boyajian AE, Eckert TL. Effects of reinforcer quality on behavioral momentum: coordinated applied and basic research.J Appl Behav Anal. 1997 Spring;30(1):1-20.

Simpson, R.L. 2001. ABA and Students with Autism Spectrum Disorders: Issues and Considerations for Effective Practice. Focus on Autism and Other Developmental Disabilities 16(2):68-71.