PHOTO CREDIT: Daniela Bishop
Episode 323
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Looking Beyond the Diagnosis
I posed a scenario where a child has a complex developmental profile and a family receives one or more diagnoses. Parents are often overwhelmed by the amount of information they are given and the pressure to quickly find services. Ira questions whether a diagnosis alone can adequately explain a child’s developmental profile, though. Rather than immediately putting a child into a diagnostic category, clinicians need to consider the whole child, the family, and the circumstances surrounding the assessment, he asserts.
Assessment Is a Relationship
Ira emphasized that a thorough assessment cannot be reduced to a checklist or a single appointment. A child may present differently depending on the time of day, the activity, the people present, and the environment. He explained that clinicians use all of their senses when assessing someone, not simply what they see or what a parent reports. An assessment is also a relationship between people, and the relationship itself provides important information.
Seeing the Whole Family
Rather than focusing exclusively on the child, Ira argues that clinicians need to consider the parents as well. Parents are living with the situation every day and may have their own needs for support. He describes beginning an evaluation by asking parents, essentially, “What can I do to help you?” The goal is for the family to leave the appointment feeling that they received something useful, rather than simply receiving another diagnosis or assessment result.
The Limits of One-Hour Assessments
Daniela reflected on the tension between the time available to clinicians and the complexity of development. Medical systems often rely on checklists, algorithms, and predetermined blocks of time because there simply isn’t enough time to conduct lengthy assessments. However, development does not happen according to a stopwatch. Particularly with complex developmental profiles, she says, clinicians may need to slow down rather than speed up in order to understand what they are seeing.
Clinicians Bring Their Own Histories
Ira discusses Selma Fraiberg’s idea of the ghosts in the nursery and angels in the nursery, explaining that clinicians bring their own histories and experiences into their work. What a clinician says during an assessment can be influenced by their own background, experiences, and assumptions. Becoming aware of these influences is therefore an important part of responsible clinical practice. (link to Gerry Costa episode)
The Value of a Transdisciplinary Perspective
I shared that this is a strength of having a DIR® lens where we bring together different professional perspectives including occupational therapy, speech-language pathology, psychology, mental health, and more can provide additional ways of seeing and understanding a child. Different clinicians can also help identify one another’s unconscious biases and prevent someone from assuming that a child is simply like another child they have previously encountered, for instance.
Keeping Our Minds Open
Daniela reflects on how clinicians’ own attachment histories, cultural backgrounds, and experiences influence their relationships with families. She raised an important question: How do clinicians create enough protected time to remain curious and open rather than treating their first interpretation as a permanent conclusion? The initial assessment should be viewed as a starting point rather than a final answer.
How Do You Know?
Ira describes situations in which a family receives a diagnosis and explains that his first question is not simply whether the diagnosis is correct, but how the clinician arrived at it, wanting to truly understand the thinking behind their conclusion. He argues that behaviour and history are important pieces of information, but human beings are extraordinarily complex. Genetics, physiology, brain circuits, development, and many other factors also need to be considered.
When the Diagnosis Isn’t Explaining the Child
Ira describes several families who went from practitioner to practitioner, receiving essentially the same diagnosis and treatment approaches without seeing improvement. In these cases, clinicians need to step back and ask what they might be missing. He shares examples of children who were eventually evaluated at the Mayo clinic and were found to have additional or different underlying issues. Once those issues were understood and treated, the children were able to make meaningful progress. Dr. Stanley Greenspan wrote about this. He advised that medical diagnoses always be ruled out first when looking at behaviour.
Don’t Stop at the Label
Daniela described how families can become stuck when everyone begins treating the diagnosis as an explanation for everything the child is experiencing. If medications, strategies, or treatments aren’t producing the expected results, it may be time to go back to the beginning and reconsider what is actually happening. The label should inform the process, not stop the process of questioning and understanding.
Parents Are Part of the Solution
It’s parents, Daniela stresses, who are part of the solution. Ira suggests asking families what they know, what they have observed, and what is working or not working. Understanding the parents’ thinking creates a collaborative relationship in which clinicians and families can work together rather than positioning the professional as the sole expert.
Living With Uncertainty
Daniela explained her experience with the extraordinary uncertainty involved in parenting a child with a complex developmental trajectory. Parents are constantly making decisions without knowing exactly what the future will look like. This creates a level of stress and responsibility that clinicians may not fully appreciate, she says. Parents are carrying an enormous amount of information and making decisions about treatments, schooling, development, and everyday life, often without clear answers.
“You Are Doing Everything Humanly Possible“
Daniela shares a particularly meaningful experience from her own parenting journey. When she was struggling with the decision of whether to hold her son back from kindergarten, a consultant listened to everything she had been doing and told her, “You are doing everything humanly possible.” For Daniela, the significance wasn’t that the consultant gave her an answer. It was that someone saw and recognized her as a parent who was doing the best she could with the resources and capacity she had. That recognition gave her the emotional space to move forward with a difficult decision.
The Invisible Load of Parenting
Ira expanded on this idea, emphasizing that parents of children with complex needs are carrying this responsibility 365 days a year, and 366 days every four years. There can be constant uncertainty about what phone call might come from school, what will happen tomorrow, or what new challenge may arise. I added that it’s 24 hours per day, and 60 minutes her hour, while offering that, of course, there are also many joyful moments, too, and we try to maximize these moments. Clinicians need to recognize this ongoing load rather than simply giving parents another list of things they should be doing.
What Can a Clinician Offer?
It can certainly difficult for clinicians to understand what it is like to live with these challenges every day, particularly when they have not experienced parenting a child with complex needs themselves. My ICDL DIR 402 course attempts to bring these issues to light for practitioners in a thoughtful manner, and has received very positive feedback in the years I’ve offered it.
Daniela acknowledges that clinicians can absolutely learn how to relate to families and support them effectively, but lived experience can provide another layer of understanding. She also points out that even well-intentioned professional recommendations can become another burden for an already overwhelmed parent.
Sometimes Being With Someone Is the Intervention
Ira shares a story about his daughter becoming overwhelmed at a theatre performance. His initial response was to try to convince her that she would enjoy the experience, but when she became distressed, he picked her up and took her outside. The experience made him question his career in psychology and ultimately reinforced for him that sometimes the most supportive thing a professional can do is simply be with someone. Being present, listening, and accompanying a person through a difficult experience can itself be extraordinarily meaningful.
Presence Over Certainty
Daniela connected this idea of presence with the episode’s theme of uncertainty. Clinicians cannot eliminate uncertainty or always provide definitive answers. What they can provide is predictability in the relationship where they are being present, remaining available, and communicating that they will continue to be there through both the positive and difficult moments. For parents living with chronic uncertainty, knowing that their clinician will remain present can be more valuable than receiving a false sense of certainty.
The Power of Appropriate Self-Disclosure
Ira described situations in which carefully chosen personal disclosure helped patients feel less alone. He shared an example involving a well-known physician with bipolar disorder who found it meaningful to know that someone else understood aspects of her experience, which prompted him to share that he was the parent of a child with bipolar disorder to his clients.
Daniela notes that self-disclosure in clinical relationships is a skill and is not necessarily appropriate for every clinician. But when used thoughtfully, sharing a relevant personal experience can sometimes communicate a level of understanding that patients and parents rarely experience in clinical settings.
Supporting Families Means Seeing the Whole Picture
I summarized what we covered this episode: being cautious about over-assessing, labelling, and diagnosing while understanding that a diagnosis is not the whole story, and recognizing parents as essential partners and acknowledging the enormous, often invisible load families carry. Good clinical practice includes how clinicians think, listen, question their assumptions, and support the people living with the situation every day.
This episode’s PRACTICE TIP:
Let’s reflect on assumptions we make every day about our child and open our mind to other possibilities.
For example: Do we assume our child is incapable of completing a simple task, so we do it for them? Do we assume they can do something that they actually need support with? Do we assume they experience something the way we do? Let’s use our observation skills and Floortime to avoid setting our assumptions in stone.
Thank you to Daniela and Ira for these powerful reflections about clinical work and potential biases. If you found this episode enjoyable, please consider sharing it on social media!
Until next time, here’s to choosing play and experiencing joy every day!
* Thank you to Toronto recording artist Ayria for the song permissions.
