Your Child is More than a Diagnosis

The Diagnosis of the Moment

In my early years assessing children, I saw a range of diagnostic questions from parents and families: “Is my child dyslexic?,” “Do they have ADHD?,” “Is it PTSD?,” and “Maybe it’s autism?” Over the past few years, one diagnostic question has taken the lead: “Is my child autistic?” Because my practice specializes in the assessment of neurodivergent children, adolescents, and adults, I initially thought this was just what happens when one advances and specializes in their practice. 

My conversations with mentors, colleagues, and students show otherwise. Seemingly every assessor is flooded with referral questions about autism. Autism is THE question for assessment. There are likely many reasons for this including: increased public awareness of what autism is, a more expansive (and less tropist) view of autism thanks to the advocacy of the neurodiversity community, the specific developmental challenges posed by COVID and shelter-in-place, and a reckoning in the field of psychological assessment with the ways our tools have not been sufficiently sensitive to diagnose specific communities. 

People, including psych assessors, used to view autism as a rather rare condition and it was common for assessors to specialize in autism assessment - or refer such cases to colleagues who did. As demand for quality autism assessment has grown exponentially in recent years, assessors have had to rise to meet this call with continuing education, consultation, and skill development. This is a good thing. It enriches our professional capacity. It shows responsiveness to our patients’ needs. At the same time, the fields of psychology and psychiatry are engaged in broad conversations about what autism is and how we should assess it. I think this will ultimately be good for our field and, more importantly, our patients. 

But, in the short term, it presents many challenges for parents and families who want to understand their child better and get them the support they need. 

What Diagnosis Can Do

Let us acknowledge the benefits of diagnosis. First, diagnosis can be a way to demonstrate that a child needs additional support and accommodation. It can potentially protect a child from misunderstandings and misattunement. It can get everyone on the same page and lay the foundation for collaboration to help a child. Perhaps most importantly, as painful as diagnosis can be, it can also be relieving. As the psychoanalyst Nancy McWilliams reminds us, diagnosis can be a form of empathy by showing a child we see their differences and their struggle. A diagnosis can give children and families a feeling that their experiences are real and shared with others like them. 

Diagnosis can also connect people with community. As mental health stigma wanes, self-advocacy movements rise, and online communities gather similar experiences, even those with more rare diagnoses can connect to people like them, share resources, and build camaraderie. The neurodiversity community is an excellent example of this. Neurodiversity affirming spaces offer important knowledge about how to advocate for oneself, navigate a beleaguered mental health system, and, perhaps most importantly, celebrate what makes people unique. 

A diagnosis can do so much, but it cannot do everything. Because a diagnosis is a phrase, a category, a simplification, it can be all too easy to invest it with bigger hopes and dreams than any category can hold. It can offer the illusion that we know exactly what is happening and false assurance that we know exactly what to do. 

People are much more complicated. 

There’s More…..

Mental health diagnoses are syndromes - collections of behaviors and experiences that go together. When enough of them go together, and diagnosticians can reliably identify these behaviors, a diagnosis is born. This is different from many medical diagnoses - which, at best, can be much more clear, reliable to diagnose, and more straightforward to treat. The etymology of syndrome is Latin - to run together. Diagnoses are collections of observations that run together. 

One problem with diagnoses is that - they run together. An autistic child is likely to also have co-occurring diagnoses of ADHD, depression, and anxiety. Depression and anxiety often co-occur with many diagnoses. In the field, we call this co-morbidity and it tends to be the rule, not the exception. This makes diagnoses complicated to research. Research has historically tried to focus on individuals with single diagnoses (no comorbid diagnoses) as this factors out the ‘noise’ of other diagnoses. But it is hard to generalize that kind of research, because it is common for individuals with any diagnosis to have multiple. If this is confusing for professionals, it may be overwhelming for caring families. 

But diagnoses are what we talk about. They fit into pithy headlines piped into parents’ content algorithms. They draw attention and emotion and even stoke hope. They facilitate marketing, search engine traffic, and selection of appropriate providers. They make things easier, but they also risk overshadowing the truth. 

Take for example an adolescent who is socially withdrawn, struggles with executive functioning, and is sensitive to loud noises and bright light. I imagine the first diagnosis that comes to mind for many is autism. We have the recognizable trifecta of social, sensory, and executive functioning differences. It is important to note that there are other diagnoses that could explain this presentation. With more information about these differences and their context, ADHD might be a more appropriate diagnosis. These symptoms are also common to adolescents at risk for psychosis. Psychosis is relatively rare in adolescence but, when present, can be very impactful. Diagnostic decisions matter, and overreliance on diagnostic language risks missing the forest for the trees. 

More than diagnosis…

Assessments often begin with a diagnostic question. Public psychoeducation typically focuses on diagnoses. Community intervention efforts present screening information to alert parents to seek assessment to rule in / rule out a diagnosis for their child. But, in a way, diagnosis is one of the least interesting features of assessment. Children are more than a diagnosis and parents are inherently curious about their child’s unique strengths and struggles. 

A colleague uses the phrase “secret questions” to describe some of the more significant questions parents have about their child. These might be questions like “what is happening,” “why is this happening,” “is there something very wrong with my child,”  “will my child be ok,” and “what do we do?” These are vulnerable questions and it is the task of an assessor to earn a family’s trust so that parents can think about these questions out loud. Taking time to discuss these questions, suspending the urge to box them into a diagnosis at the outset, and tolerating the uncertainty in this process can lead to a richer assessment, deeper insight, and greater conviction that we are seeing the child as they are. 

Many assessment tools compare a child’s performance to that of similar children. They locate a child in relationship to a group. This has many advantages. We recognize diagnoses by noticing patterns of challenges that run together. Comparing a child to other children helps us to see how extreme or uncommon their challenges are. 

There is a risk here. The ecological fallacy is a cognitive bias, where one takes information about a group and applies it to the individual. An assessment that only compares a child to large groups of peers risks misrecognizing the individual child. 

A quality assessment will take the time to learn about the individual child. This can include interviewing important people in the child’s life, involving the child in the assessment process by identifying questions for the assessment, reviewing past report cards and teacher comments, and more. 

At Tide Pools, we not only understand the importance of well-informed diagnosis, but the necessity of going beyond diagnosis to better understand each individual child. The true value of an assessment is offering a clear and comprehensive picture that sets the stage for future intervention and growth. 

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At Tide Pools, our comprehensive assessments go beyond diagnosis and take the time to understand your child deeply. If this sounds like a good fit for your family, reach out to schedule a consultation.