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Two words about medications: be thorough. You should never dispense medications to your child just because a doctor says so; you need complete information when a psychotherapeutic medication is recommended as part of your child’s treatment plan. Some physicians may not disclose all the information they should without your prompting, and some prescribe medications “off label” meaning they have been tested with adults but not with children, or have been shown to be effective in treating a similar, but not the same, condition. Only by asking questions can you better understand the possible benefits and side effects of recommended medications, and thereby make an informed decision as to whether you wish to pursue the treatment.

  1. What is the name of the medication? Is it known by other names? Is a generic equivalent available?
  2. How do body systems absorb and eliminate the medication?
  3. What do researchers know about the medication’s effectiveness in patients with autism or Asperger’s?
  4. Has this medication been tested with children?
  5. In what way do you expect the medication to help my particular child (not just children in general)?
  6. How long does it take before we see improvement?
  7. What are the common side effects? What are the less common and/or possible serious side effects?
  8. Under what conditions should we immediately stop its use? Is it dangerous to stop use immediately (drug withdrawal; needs to be tapered)?
  9. Is this medication addictive? Can the child abuse it?
  10. What is the recommended dosage? How often will the medication be taken and at what time of day? Does “three times a day” mean around the clock or three times over the waking hours?
  11. Are laboratory or other tests needed before taking the medication? Will any tests be required while using the medication? Where will the tests be administered? Will anesthesia be required?
  12. Will a physician monitor my child’s response to the medication, making dosage changes if necessary? Who will assess my child’s progress and how often?
  13. How long will my child need the medication? What factors will lead to a decision to stop this medication?
  14. Should my child avoid any other medications or foods while taking the medication? Should he take the medication on an empty or full stomach?
  15. Should my child stop participating in any particular activity while taking the medication?
  16. What do we do if a problem develops? For example, what if my child becomes ill, he misses doses, or we see signs of side effects?
  17. What is the cost of the medication (and its generic, if available)? Does my health insurance cover it? Is financial assistance is available?
  18. Do we need to tell the school staff about this medication?
  19. Where can we get written information about the medication? Where can we read objective evaluations of the medication written by sources other than the manufacturer?
  20. Are there other medications for this condition? Why do you recommend this one over the others?

 

~ excerpted from 1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s by Ellen Notbohm and Veronica Zysk (2010, Future Horizons) as adapted from “Medications and Informed Consent” by Luke Tsai. MD, Autism Asperger’s Digest, January-February 2002

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