Newswise — How a family comes to terms - if they are able to come to terms - with a diagnosis of autism is documented in the BBC television series that is currently being broadcast on Sundance TV, The A Word. The first episode in the series portrays how parents undergo the process of obtaining a diagnosis while navigating their own emotions and the differing opinions of their family members.
This is an experience that we see almost every day as a developmental pediatrician and speech pathologist and intervention researcher. The stakes are high in bringing up and in obtaining a diagnosis, and everyone has an opinion. How we communicate about these opinions can be helpful or hurtful to families.
For example, a new mother notices that her child isn’t yet talking and doesn’t interact with her the way her friends’ children do. Her child is already receiving speech and language therapy but she is beginning to think something else might be going on. She asks her speech-language pathologist, “Why isn’t he talking?”This is the moment where the diagnostic process begins. It does not begin at the formal evaluation. It begins the very moment that the parent suspects that something isn’t quite right.
As a speech-language pathologist, Dr. Roberts has been asked this question numerous times. Before working as part of a multidisciplinary diagnostic team, Dr. Roberts was afraid to use the “A word” with parents because she is not a physician. By seeing both sides of the experience, she realizes that to not mention her concerns jeopardizes the relationship she has built with the family. She never wants a family with whom she has worked for months to finally ask her, “Meg, did you know he had autism?” Because chances are, she did, and she wants her relationship with parents to be based on respect and trust.
As a developmental pediatrician, Dr. Bauer humbly appreciates that she has a different relationship with the family than the child’s therapists and teachers. It can be a difficult situation for parents when she is concerned a child has autism, and this is a different perspective from the treating team. Within a team, members may not agree. Differing perspectives are confusing and contribute to uncertainty with families. It can also delay diagnoses and access to interventions. The conversation about who should bring up autism is a complicated one and warrants further consideration in order to better support parents.
To be sure, it is not easy to bring up concerns, including possible autism, within the context of a therapeutic relationship. It can be even more difficult with a therapeutic relationship that occurs as families allow you to work with their child in their home. If a team is concerned about possible autism, one option for young children is to incorporate standardized screening measures such as the Screening Test for Autism in Two Year Olds. This play-based screening measure evaluates for early signs of autism, and the results can be used to bring up to parents the need for further evaluation.
If parents or therapists are concerned, then further evaluation should be proactively brought up in order to establish care and support, even if it does not result in a definitive diagnosis. Sometimes a child needs time to develop and grow, and it can provide extra support for parents if they establish a team to objectively monitor developmental progress.
The diagnostic process can always be improved – from the perspective of the child, the parents, the therapists, and the diagnostic team. For example, researchers from Sweden interviewed 11 parents of children who were diagnosed with autism. They found that parents felt empowered but alone after a diagnosis, and they felt that they had to fight for services to help their children. Multiple research studies have found that families feel overwhelmed with the amount of information they received at diagnostic evaluations. However, parents also expressed a preference for hearing a diagnosis with a hopeful tone as well as next steps to support them as they navigate resources for their child. Parents also may not be ready to seek a diagnosis. Dr. Lynn Adams, a child psychologist with expertise in autism, describes her journey of diagnosis with her own son in Narratively. As she describes, “There wasn’t going to be a prize for the earliest or best diagnosis.” What matters is that a child and family receive the individualized support they need, and this can change as the child grows, learns, and develops.
With these ideas in mind, we propose envisioning a diagnostic experience that is focused on understanding a family’s experience and supporting them in the process of helping their child. For parents, what if the diagnostic evaluation was the beginning of a chapter to improve their understanding of their child’s learning and development?
Ultimately, the diagnostic process involves doing our best to tell the truth with kindness, empathy, and grace. It is about being willing to walk with parents on the journey, to see their child through their eyes, and to work to find what resources would best serve them. In addition, our role is to follow how the child is developing over time and enhance this course with intervention and support.Perhaps, we would create a better process in which families felt heard, valued, respected and empowered.
Dr. Sarah C. Bauer is a developmental pediatrician at Ann & Robert H. Lurie Children’s Hospital of Chicago and Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine. Dr. Megan Y. Roberts, CCC-SLP is speech-language pathologist and the Jane Steiner Hoffman and Michael Hoffman Assistant Professor of The Roxelyn and Richard Pepper Department of Communication Sciences and Disorders at Northwestern University. They work collaboratively at the Northwestern University Clinic for Speech, Audiology, Language, and Learning.
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