News and Notes from The Johnson Center

Q & A: How do we know what to do?

JCCHD | Thu, April 05, 2012 | [Autism Treatment][Q and A ]

Question from K.A. in Texas:
Q: It seems like every day there is a news story about autism research that says this is good, this is bad, don’t do this, do this. It is hard to make sense of it all. How can parents make the right choice for what their child needs?

Dear K.A.,
Parents should not feel as though they must navigate through the research literature alone, trying to find information that could be helpful for their family and child. Experienced clinicians can and should help parents understand and evaluate research and appropriate treatments for autism. When parents and clinicians work together and remain focused on a child’s symptoms and health history, specific medical and behavioral treatment plans will be developed and implemented according to the individualized needs of that child.

Parents are not expected to be experts on other disorders or diseases, such as arthritis or diabetes; if their child receives one of these diagnoses they go to a clinician who focuses on that particular issue – a specialist.  These clinicians are experts who are responsible for staying up-to-date on the most recent research. Parents of children with autism and related developmental disorders should expect no less. They should find a clinician (or clinicians) who keeps up with emerging news and information in the field.

However, given the complex issues associated with autism, it is important that parents learn how to be critical consumers so that they can find an informed clinician, ask informed questions, and actively participate as a member of their child’s treatment team. This is important for two reasons. One, it ensures parents are getting full information and making informed treatment decisions for their child. Two, if a parent fully understands the science and rationale behind any treatment recommendation, their dedication and follow-through will be much better. Some interventions, such as behavioral therapy, dietary intervention, or daily medications, require a vigilance and commitment that can be challenging; understanding why you are doing what your are doing can make a big difference in successful implementation.

We recently hosted a webinar on Understanding Research (The Science Doesn’t Have to be Scary). We will host another session of this presentation in the coming months. If you want to learn more on this subject watch this blog for scheduling announcements. In the meantime, read, ask questions, and consider going to a conference like the Autism Research Institute’s conference (in Newark in April and Anaheim in October).  ARI also has informative presentations of past conference presentations on their website. These presentations do not take the place of treatment advice; they should be the starting point for developing questions to ask your treating clinicians.

You should never feel intimidated or uneasy asking for more information, clarification, or justification for any prescribed intervention or treatment. Your main focus as a parent is to appropriately advocate for and support your child and your clinician’s role is to provide the information and resources that you need to do this well. This partnership relies on open communication, trust, and knowledge, and done well, provides the framework your child needs to reach their maximum potential.

If you have a question you would like the clinicians and researchers at The Johnson Center to answer, email your question to .(JavaScript must be enabled to view this email address). Names and emails will be kept confidential.