72 Other Tips for Conversing with your Medical Professionals

Do not underestimate your role in the decision making for your child/dependent or yourself. Active involvement of the patient and his/her caregiver will help better treatment administration and establishment of the partnership with medical professionals. There are several things that you need to remember.

• Ask the doctor/therapist about his or her training and experience. This will help you learn whether you and your child are in good hands. Moreover, do not hesitate to seek a second opinion to reconfirm the diagnosis.
• Do not hesitate or feel embarrassed to ask your doctor, therapist, or nurse if you do not understand how the intervention or prescribed medication would work. If something still seems unclear, make sure to ask again – medical professionals are there to help you!
• If you feel that the doctor/therapist is rushed, ask for another appointment to have enough time to go over your questions.
• Gather information about the condition. Good places to ask for information include your doctor, reputable books and websites, and support groups. Again, make sure that the information you receive is clear and makes sense.
• When your child is prescribed new medication or intervention, do not hesitate to ask about positive and negative effects, potential side effects, and steps for taking the medicine and undergoing intervention. In addition, check whether the drugs already being taken (including vitamins and over-the-counter drugs) are still OK to be consumed.
• Before treatment starts, check the cost and whether your insurance will cover it.
• If your child needs to be involved in treatment beyond medication (e.g., behavioral therapy), make sure you ask how long it is expected to last and what your expected involvement will be (e.g., visiting the clinic on a weekly/biweekly, monthly schedule; the length of each visit).
• Ask for research support for the intervention. Does it have scientific support?
• Write down information about the treatment that your doctor gives you to make sure you can follow what is prescribed.
• If you feel that you might become too emotional or not remember what the doctor said, bring someone else like a trusted family member or friend with you to the appointment.
• Keep medical records from previous hospitalizations or doctor visits. This will help your current doctor/therapist to have a better understanding of your child’s health.
• Read any medical documentation and informed consents carefully before signing and make sure to ask your doctor or nurse if something is unclear.
• If any treatment or procedure is against your cultural or religious beliefs, explain this to your doctor. The more the doctor understands your position, the better he or she can prescribe treatment without infringing on your beliefs.
• When considering intervention options for a child/adult with ASD, remember that he or she is an individual who requires an individual approach. Be cautious if the treatment claims to be a “one-size-fits-all” package, offers a cure of or elimination of all symptoms, or does not regularly assess the individual’s progress throughout the treatment.

Resources

American Academy of Pediatrics (AAP). (2006). Understanding Autism Spectrum Disorders (ASD).

American Academy of Pediatrics (AAP). (2007). Identification and evaluation of children with Autism Spectrum Disorders. http://www.aap.org/pressroom/AutismID.pdf

Centers for Disease Control and Prevention. (2010). http://www.cdc.gov/ncbddd/actearly/milestones/

First Signs (2010). http://www.firstsigns.org/concerns/parent_doc.htm

Freeman, B.J. (1997). Journal of Autism and Developmental Disorders, 27, 641-651

Joint Commission. (2009). Speak Up Initiatives. Available from http://www.jointcommission.org/PatientSafety/SpeakUp/

Shattuck, P., Durkin, M., et. al. (2009). Timing of identification among children with autism spectrum disorder: Findings from a population based surveillance study. Journal of American Child and Adolescent Psychiatry, 48(5), 474-483