How to Talk to a Doctor so They Will Listen.... and Respond.
Much of my compass work for autism involves aiding families as they navigate their way toward the support of physicians and other healthcare providers who will care for their kids. My idea was simple: I would send people a name or two of “understanding” doctors who relate and have a history of providing productive, effective help for our children. Recently, this has proven to be quite challenging. Finding and getting to a knowledgeable provider can be like scaling a mountain. Physicians who understand and treat our kids are rare. Many of those extraordinary physicians are overwhelmed with cases and have stopped taking new patients, or have stopped taking patients that must travel and communicate long-distance. Some clinics have closed entirely. So it is even more important for me to help parents communicate effectively with their local healthcare providers so their kids get the help that they require.
This article will help you be the most effective communicator possible so you can get your physician’s attention.
What are the barriers?
Medical practitioners are educated people who have sworn an oath to “do no harm”. (Translation: I may not be able help you, but I’ll try not to hurt you.) Frankly, it is as much a healing art as it is science. The elder generation of physicians was told in medical school that they may see one case of autism in their entire career (1)! That was when Kanner’s autism was at a rate of 1 in 10,000. Younger physicians graduated from medical school in the nineties when the present epidemic of autism was just beginning to explode. Autism wasn’t mentioned in medical school, and unless a case was seen in residency, the medical grads of the 1990’s didn’t hear about it or see it. Many of the practitioners who deeply understand today’s autism and chronic neurologic disorders do so because they have been personally affected, either by having an ill spouse, child or relative. Finally, the paradigm that autism is a developmental, untreatable, life-long condition is only now being challenged by the numerous stories of recovery and hope (1-5). If a physician has never witnessed recovery in their practice, they may not even believe it is possible.
We live in the most litigious society in the world. Physicians are highly reluctant to practice in the unchartered, grey areas of medicine, especially on children! More and more, insurance carriers are dictating to doctors how they can practice and what they can order or prescribe. This is the reason many of the “good ones” are no longer taking insurance.
Our kids are complicated. They require an enormous amount of thought and time. There are no simple solutions. Every child is unique. Many people go into pediatrics thinking they will deal with a healthy, medically uncomplicated population.
What can you do to circumvent the above barriers?
Realize that you may not be able to win-over some physicians. Be prepared to walk away and start over with someone else. Accept reality. It saves you precious time and energy. You and your child deserve better. You didn’t marry the first guy or gal to come along, and you won’t settle for a twit to be in charge of your child’s future either. Talking with other parents can help tremendously in narrowing your choices.
You are your child’s best expert and advocate. You know your child better than anyone. Your parental instinct is extremely powerful. Trust it. If your instinct has been weakened or extinguished by your autism journey, reignite the flame so that you can be strong and sure of yourself. Don’t walk into a medical office weak, powerless, or emotional. Confident does not mean angry, snarky or sassy. You may have had negative interactions with others, but today, you have an opportunity to meet a potential winner.
- Prior to your appointment, gather all prior medical records and make copies. Be sure to include blood work, EEG’s, etc. Make a list of current medications, supplements, and allergies. Consider making a binder for yourself and a duplicate for your physician if there are so many records that papers will start flying everywhere.
- If you have other children, try to arrange for their care so that you can be entirely focused during your appointment.
- Write down your questions in advance and make a copy for the physician. If you have ten questions, highlight the five that are most crucial so you don’t miss them. It’s easy to be distracted by your wandering child or by the conversation.
- Consider inviting another person to write notes for you. It is easy to become overwhelmed and miss critical pieces of the conversation. If you cannot bring a helper, ask permission to record the visit so that you can remember how the doctor answers your questions.
- Do your research. Be prepared with original scientific articles and book references that support your reasons for asking for specific tests or a particular course of treatment. All of this preparation will make you look credible and be taken seriously.
The day of the appointment:
- If you’re not the first morning or first afternoon appointment, call in advance to see if the physician is running on time. You have a child who may not be able to sit and you need to know if they will be 30 minutes late or more. This is a reasonable question, for your own sanity’s sake, and is respectful to your child, the office and other patients.
- Bring your sheet of questions and your scribe or recording device. If recording, ask permission: “I know I might forget something important. Do you mind if I record this?” Present yourself as knowledgeable but not confrontational. Remember, you want to partner with this provider for the welfare of your child.
- If you are asking a primary care provider such as a pediatrician or family practitioner to help you get started and run initial tests, be ready to take those results to a specialist. Having a cooperative local doctor makes all the difference in the world when your specialist is hundreds or thousands of miles away and less accessible for questions. You are asking for help “getting started” so that your child can receive medical treatment faster. It takes weeks, perhaps months, to be given an appointment by a NIDS, MAPS or PANDAS/PANS leading provider. When you are talking about symptoms, remain in the physical realm, not the psychiatric or developmental. Discuss physical symptoms that a medical doctor will connect with: lethargy, poor sleep, dull eyes, staring spells, visible seizures, constipation, diarrhea, allergies, rashes, painful joints, illness (always sick) or conversely, never seems to get sick (a sign of immune dysfunction). Words like “sudden-onset” or “gradual-onset” explain regression after illness. If you talk about behaviors, or lack of friendships, these can all be dismissed as part of “autism”.
If the doctor does help you, show your gratitude. A note of thanks, a phone call update, or a follow-up appointment demonstrating tangible improvement all help the provider know that the results of their practice made a difference. This goes a long way to help your child, and to help other families. A physician who has seen a protocol work for one child is much more willing to help other children with a similar set of symptoms. You are a trailblazer! A thank you, a handshake and a smile are all positive, welcomed feedback.
Getting appropriate medical treatment for autism or related disorders can be pivotal for a child’s recovery. Some day, physicians on every corner will understand how to recognize and treat underlying immune, microbial and gastrointestinal conditions that impact behavior. However, we are not there yet. These simple steps can help you put ideas into action to benefit your child right away.
1. Goldberg, M.J. and E. Goldberg. (2011) The Myth of Autism: How a Misunderstood Epidemic is Destroying Our Children. Skyhorse Publishing, New York, NY, page 15.
2. Herbert, M. and K. Weintraub. (2012) The Autism Revolution: Whole Body Strategies for Making Life All it Can Be. Ballantine Books, Random House, New York, NY.
3. Adams, C. (2005) A Real Boy: A True Story of Autism, Early Intervention, and Recovery Berkley Trade, Penguin books, New York, NY.
4.Maloney, B.A. (2009) Saving Sammy: A Mother’s Fight to Cure Her Son’s OCD. Three Rivers Press, Random House, New York, NY.
5. Hinds, M. (2013) I Know You’re In There: Winning Our War Against Autism. Submitted for publication.