By Karen J. Miller, MD
Developmental-Behavioral Pediatrician and Symposia Medicus faculty member, Dr. Karen Miller, offers her advice on ways healthcare professionals can empathetically explain and discuss a diagnosis of autism with their patients and their families.
Dr. Miller will continue the semi-regular column, Behavior Matters, on Symposia Spotlight. Please send your questions for Dr. Miller to firstname.lastname@example.org.
You would think that the hardest part of diagnosing autism in one of your patients is making the diagnosis. That isn’t the hardest part. Even saying the words, “Your child has autism spectrum disorder,” isn’t the hardest part. Even if the diagnosis is expected, there will be a hollow silence. Wait. Quietly respect the moment. The hardest part is what to say next.
So, you start where they are at, join them and then move forward together. How do you do that?
To find out where they are at, ask them. Try, “Tell me again what you know about autism.” Even if they already have one child with autism, I always ask, “Do you know anyone else with autism? What were they like?” You may find out about the neighbor’s autistic adolescent who does scary things, and their child is not like that. Always ask the other parent or caregiver about their experience. Ask if they have talked to anyone about autism or done “research online.” If they have inaccurate, misinformation, write it down so they know you take them seriously, but defer discussion by stating, “We will come back to that later.” Often, you can work the correct information into your discussion without direct confrontation.
What does “join them” mean? Empathy is key. Validate their feelings, whatever those feelings are. It is often a messy jumble of feelings. There is no right way to feel about the situation. Each person will feel different ways at different times, and that is okay. Highlight one or two things that they said that demonstrates their support and love for their child. Once they feel heard, they can listen.
Parents will often want to jump from the word “autism” to “what do we do now?” Compliment their readiness to help their child. Ask permission to “first explain a little bit about what we know now about autism so that we are all on the same page moving forward.” Pause and wait for parents to indicate their readiness for information. Some parents will not be ready or will want to come back with the other parent/caregiver. If that is the case, make another appointment. Do not give a quick version or a checklist. Have them come back, preferably in person. You have a unique opportunity to lay a solid foundation of understanding that is necessary for the success of the individual and their family. Parents will still want to “do something.” Either way, before they leave, I have parents pull out their phones and send themselves a text or email with a link to autismspeaks.org/newly-diagnosed. That will take them to the 100-Day Toolkit which is reliable, supportive, and available in several languages.
Now they are ready to talk about Autism Spectrum Disorder (ASD). Parents hear the word “autism” tossed around and are reassured when they learn there is a rule book for the diagnosis. The Diagnostic Statistical Manual 5th edition, 2013 (DSM-5) uses the word spectrum because there are similarities but also differences between individuals. A rainbow is a color spectrum. With the Autism Spectrum, some children can be severely affected and other children may look very typical but still have symptoms and need supports. Some children don’t speak and some do, maybe too much or don’t take turns in conversation or don’t understand body language. This problem with language skills and understanding other people is called Social Communication [DSM-5 Cluster A symptoms]and difficulties in this area are required for a diagnosis of ASD. The brain areas involved start developing before birth and take a long time to wire together and to start working. Individuals with autism seem to be “differently wired,” but it may not show up as a problem right away.
Sometimes being differently wired can be a good thing for a person; sometimes it makes life harder. The great thing about brains is that they change, they learn, they adapt; they make new wiring patterns to form new habits (like words) and then connect them up (like sentences). Brains can keep that pattern or try a different one that works better. In ASD, the other key problem area is when the brain gets stuck in a pattern or misunderstands the signals from the environment to the point it becomes a problem. This problem is called Repetitive, Restricted Behaviors (DSM 5 Cluster B symptoms).
Sometimes repeating or focusing on one thing is good for a person, but sometimes it makes life harder. Sometimes noticing very small differences in touch or sound is wonderful; sometimes it can be too annoying to ignore. Sometimes the differently-wired brain doesn’t know the pattern to use to make things feel right again and it gets confused, upset, and short-circuits.
The great thing is that brains can learn and can change their own wiring, especially if they get help from wiser brains. Wiser brains understand people with different wiring are doing the best they can right now; they just may need help to wire another pattern that won’t “short-circuit” so easily. They may need to practice using that new and better pattern until it becomes a good new habit for them. Once the new habit is well-wired, it becomes easier to use when needed. Differently-wired brains become amazingly-wired brains when they have a team of wise brains guiding them. Wise brains are willing to work hard and work together. Now that you also understand about brains that are differently-wired, we can work together to build the team for your child so they can become even more amazing.
Help parents be a “Wise Consumer” of information. There is a lot of misinformation about autism on the internet and social media. Some information may be right, but not for that child, or not right now. Ask questions and go to reliable websites, such as www.healthychildren.org (American Academy of Pediatrics) and www.autismspeaks.org. Tell parents about the Amazing Things Project (https://amazingthingshappen.tv), which features an animated video that explains autism in simplified terms appropriate for both children and adults. It is translated in multiple languages.
Karen Miller is a Developmental-Behavioral Pediatrician at Tuft’s Children’s Hospital. She lives in Brookline, Massachusetts.