As a parent or caregiver, do not underestimate your role in the decision making for your child/dependent or yourself. Active involvement of the patient or 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.
- What is your training and experience? This will help you learn whether your child or you are in good hands. Moreover, do not hesitate to seek a second opinion to reconfirm the diagnosis.
- Could you repeat that? Do not hesitate or feel embarrassed to ask your doctor, therapist, or nurse if you do not understand how the treatment or prescribed medication would work. If something still seems unclear, make sure to ask again – medical professionals are there to help you!
- Can we meet again to talk? If you feel that the doctor/therapist is rushed, ask for another appointment to have enough time to go over your questions.
- Can you answer some questions? Gather information about the condition you or your child has. Good places to ask for information include your doctor, reputable books and websites on how to evaluate web information), and support groups. Again, make sure that the information you receive is clear and makes sense.
- What are the side effects and possible interactions? When prescribed new medication or treatment, do not hesitate to ask about positive and negative effects, potential side effects, and steps for taking the medicine and undergoing treatment. In addition, check whether the drugs already being taken (including vitamins and over-the-counter drugs) are still OK to be consumed.
- Will insurance cover this? How much will it cost? Before treatment starts, check with your insurance to ensure treatment will be covered and that your doctor/facility is “in-network”.
- How often will we need appointments? If your child or you need 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).
- Can you write that down for me? Write down information about the treatment that your doctor gives you to make sure you can follow what is prescribed.
- Will you come with me? 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 your medical records from previous hospitalizations or doctor visits. This will help your current doctor/therapist to have a better understanding of your child’s or your health.
- Do I understand this prescription? Read carefully any medical documentation and informed consents before signing and make sure to ask your doctor or nurse if something is unclear.
- Is this personally acceptable? 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.
- Will this treatment be tailored to my child? When considering treatment options for a child/adult with an 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 cure of or elimination of all symptoms, or does not regularly assess the individual’s progress throughout the treatment.
1. Freeman, B.J. (1997). Journal of Autism and Developmental Disorders, 27, 641-651
2. Joint Commission. (2009). Speak Up Initiatives. Available from https://www.jointcommission.org/PatientSafety/SpeakUp/
Treatment and Interventions
- How effective is this treatment? What is the evidence that this treatment works? There are many interventions that can help with symptoms of ASD. However, not all the treatments are effective or may even be dangerous. Make sure that the intervention suggested for your child has proven to be effective. Review evidence-based interventions to familiarize yourself with treatments/interventions that have proved to be effective.
- Is this treatment individualized for my child? To be effective, it is important to make sure that it is individualized for every child. Avoid treatments that offer a single approach.
- How will I know if my child is making progress? Progress needs to be monitored to ensure that the treatment or intervention is working or if changes are needed. Make sure that regular assessments are done.
- Would it require me changing my beliefs? Effective treatments do not require you to believe in them. Avoid treatments that ask you to change your beliefs.