On another Caboodle post in our recent news, we listed an article discussing findings where doctors admit to being largely unprepared to handle patients with autism. Below is a guide by Autism Speaks with tools, tips, videos and suggestions regarding working with the families affected by autism.
I found my initial experiences with pediatric physicians to be frustrating. It took several visits, with several doctors to finally find the few who truly understood not only the needs of our child, but the needs of our family – the primary caregivers, as well. In order to take care of the primary, underage, patient, special consideration must be given to the primary caregiver for that child. After all, they are the ones who spend the most time with them and know them better than anyone else.
Pediatricians have a vast array of knowledge on sore throats, colds, flus, childhood conditions and all things medical but as autism is a spectrum, I can give you the map on how to best handle my specific child, expediting much of the time you have to spend with us. Google has yet to give me a medical degree and I do not profess to know more than a pediatrician. In fact, it must be exhausting as a physician who probably worked her guts out to get that medical degree and license to practice to have someone doubt your conclusion based on what they found on the internet or saw on a tv show. Let me make clear: No amount of basic cable or internet research can replace the formal education of a doctor and I have an immense amount of respect for what physicians have accomplished and what they do.
It’s just that more times than not, I have found myself disappointed by pediatric physicians with what seems to be a lack of understanding for their patients with autism. I have also had very positive experiences as well, as there are doctors I would follow to the moon if that is where their practice was located. Learning to manage my expectations has also been key.
As a parent advocate, I would love to see pediatric physicians choosing to learn about autism and how to work with their primary caregivers. I’ve met with many parents who have stated that getting the initial diagnosis was a nightmare. Some of the statements that are made by clinicians are either completely empty and provide nothing of value, extremely negative in nature, drawing out all hope from the parents or both of these things.
Based on my own personal experiences and the feedback I’ve heard from others, I would like to say something to you, the pediatric physician. To the doctor who will be delivering the news to your patient’s parents for the first time:
Please remember that these people think that sweet, precious, little child, your patient, hung the moon. They are more than the set of deficits listed on the evaluation you’re holding. During this frightening time, parents will be hanging on to your every word, leaning heavily on your education and background. Praying that you became a doctor to help people – to help families like them, children like theirs. They may feel vulnerable, helpless and frightened. Or they may feel relief to finally have an answer to a nagging suspicion they’ve had for so long. If you’re not sure, just ask and tailor your message accordingly. They may even wonder if any part of you can empathize, understand or relate to them as a parent and not just as a doctor. This is your time to shine, not something to dread or mark off your to-do list that day. Knowledge is power for both you and the parents. In these moments how much you know or don’t know can make a monumental difference. When you learn about autism, you will see many success stories of people who defied the original declarations made by clinicians that they would never be able to do anything worthwhile or lead an independent life. I am asking that you keep an open mind.
Educate yourself about these outcomes, review the studies, learn about the therapies that contributed to these successful interventions. In doing so, when it is feasible, your delivery of an autism diagnosis message can be more reassuring. I’m not talking about sugar coating it either, no lies or embellishments. Delivering the truth as it stands is vitally important in correctly managing the parent’s expectations, it just doesn’t have to be such a negative experience, for either of you. What I’m referring to are the options and services available to families. Ones that have been shown through research to assist individuals with autism live a successful life; and in more severe cases, having knowledge and resources available for the family on how to obtain a more manageable life. Be explicit with your information and manage the caregivers expectations of your role accordingly. The care your patient receives is in their hands once they step out of your door and they need to know what they can and can’t expect from you.
You may find it helpful to have a folder of resources put together ahead of time for these patient’s caregivers. It can contain information from local non-profits, specialists, commonly endorsed therapy interventions, websites, psychologists/therapists who work with special needs caregivers, community autism programs, parent support groups, respite care and more. When the parents leave your office saying to themselves, “Now what?”, they have several resources as opposed to walking away empty-handed. Having nothing can further add to the confusion, fear and sadness cutting into the precious time in which to help the child. Having a folder of carefully selected resources from and endorsed by their physician will establish understanding and trust in you, creating a culture of hope and giving a child diagnosed with autism every possible chance to succeed.
I am elated to see that Autism Speaks has provided resources for physicians to assist them in understanding this issue more fully. Please find the information by Autism Speaks below:
Parents never forget the feedback session as receiving a diagnosis of autism for their child can be a very stressful and overwhelming experience. However, while this is a difficult diagnosis to provide to a family, a well-run feedback session may also be a positive experience. The feedback session is often a crucial touchstone on the journey of having a child with a disability. Effective communication between the clinician and the family can lead to parents feeling supported and empowered to use the information that they receive to begin to address their children’s needs.
A Clinician’s Guide to Providing Effective Feedback to Families Affected by Autism and the accompanying videos are designed to provide health care professionals with instructional support for leading a productive diagnostic feedback session. The manual and videos focus on all aspects of providing information about a diagnosis of autism – verbal, written and body language.
While the manual and videos primarily target psychology trainees who are giving an autism spectrum disorder diagnosis to families, the principles involved apply to all clinicians who deliver evaluation results, diagnoses and/or treatment recommendations to their clients. Good feedback practices are universal and apply to clinicians in other professions including pediatricians, speech/language therapists, occupational therapists and physical therapists.
It is the writers’ hope that the feedback videos and materials will be widely disseminated and promote thoughtful discussion about how best to give families critical information when their children receive a difficult diagnosis.
The videos below present parents and clinicians discussing their positive and negative experiences with feedback sessions and can be shown in class or viewed online to illustrate key concepts and best practices.
To learn more about the tool kit and the importance of delivering effective feedback, see a blog post by co-author Harriet B. Austin, Ph.D., here. You can also download other AS-ATN/AIR-P tool kits on the Tools You Can Use page.
“These materials are the product of on-going activities of the Autism Speaks Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, HHS, or Autism Speaks.”