Three Methods Differential Prognosis Can Be Neurodiversity-Affirming — THINKING PERSON’S GUIDE TO AUTISM
There is some confusion about what neurodiversity-affirming assessment actually looks like in the real world. Some people worry that affirming care means rubber-stamping whatever someone already thinks, while others worry that differential diagnosis—a systematic process used to identify the most accurate condition(s) (or neurotype) from a set of possible competing conditions (or neurotypes)—inevitably undermines lived experience. Neither of those things has to be true.
To explore what being neurodiversity-affirming is truly about, we can consider that the neurodiversity paradigm, according to one popular definition, has three main components:
- Neurodiversity is natural and valuable.
- The idea of one right or normal type of brain is a social construct.
- The social dynamics that manifest in regard to neurodiversity are similar to the dynamics that manifest in regard to other forms of diversity, which include social power inequalities, but also, when embraced, offer a source of creative potential.
Instead of being in contradiction to differential diagnosis, I would suggest these principles are aligned with an affirming differential diagnosis process. To be clear, there are many obstacles to accessing accurate and affirming diagnoses, and some research suggests that many self-identified Autistic people are similar to those who are formally diagnosed, so self-identification is valid within the neurodivergent community. But, there is still a need for an accurate and affirming differential diagnosis process for those who want it, for clarity, for empowerment, and for community.
Here are three ways differential diagnoses can also be neurodiversity-affirming.
1) Empowerment through Collaboration
Differential diagnosis can be neurodiversity-affirming when it empowers clients through collaborative assessment.
Clients are experts on their own experiences—and clinicians can respect that while also empowering clients, using the expertise we have in understanding diagnoses because of many years of training, research, and experience. A comprehensive assessment often involves integrating multiple sources of information from direct testing, collateral sources, standardized questionnaires, developmental history, prior records, and other sources.
This allows us, together with our clients, to step back and look at the big picture in a way that individuals may not be able to do on their own behalf, and clinicians cannot do without client input. Traditional assessments can be biased plus autism is underdiagnosed, especially in certain populations like women and marginalized groups. At the same time, accurate assessments can also be life-changing. Getting a formal diagnosis can open the door to getting accommodations at school and at work, accessing important funding that may be needed, and when relevant, getting correct treatment.
Consider the case of Laura, a young woman who notices she is having trouble fitting in with her peers, has trouble balancing conversation because she takes long conversational turns and accidentally interrupts, experiences heightened sensory sensitivity to sounds that do not seem to bother other people, has erratic sleep, paces, and throws herself into projects of interest for hours at a time, barely stopping to even drink water or use the bathroom. Sounds like autism, right? If she googles her symptoms or looks at certain social media, she might find that many Autistic women describe similar traits. But with further context and information, these could also be initial signs of hypomania or mania and this person might actually be Bipolar. In other cases, similar traits may indeed reflect autism—which is why a thorough assessment with a focus on timeline can be really valuable.
Bipolar often goes undiagnosed for many years, with some people waiting five to ten years for an accurate diagnosis. Unfortunately, people are often diagnosed with Bipolar only after they have gotten into an emergency situation because their mania has caused psychosis or some type of impulsive decision-making. Laura might make a career-ending decision or permanently damage relationships before she even knows what is going on.
In contrast, if Laura goes to an affirming clinician who does a thorough, comprehensive assessment, considering developmental history and how her symptoms have changed over time, she might get access to medication that can help her—before she goes into psychosis, or before her symptoms become intense enough to cause damage to relationships.
Even when the diagnostic formulation changes, a client’s insight about what works is important. Laura’s clinician does not have to discount her sense of relating to Autistic people or the value of the neurodivergent community. She can inquire further about what she relates to and why this is important. Upon further investigation, they might discover that Laura is both Autistic and Bipolar, but even if the outcome is not what Laura was expecting, going in, the process can still be affirming and empowering.
The clinician can empower Laura by engaging in shared decision-making with her. She can provide guidance about next steps, but she can also get insight from Laura about what accommodations might help her at work, what side effects of which medications she can tolerate, which family members can know about her care, and what her plan will be if something goes wrong. Using neurohumility, her clinician might acknowledge that he does not quite know what it is like to be Bipolar, and that, as a field, we are still working on understanding the overlap between autism and Bipolar. Considering the social dynamics that affect all experiences of neurodivergence, being empowered by an effective clinician can be truly affirming.
Contrast that with the experience of Jenny. She takes her child, Winston, for an assessment to see if he might be Autistic at the suggestion of his teacher, because he has trouble following instructions. The clinician uses a deficit-based clinical interview that misses Winston’s nuanced traits, plus reviews a few school records. Jenny tries to describe her observations, but she feels dismissed. The clinician interacts briefly with Winston, and says he cannot be Autistic because he makes eye contact and engages in a back-and-forth discussion about sports. Winston continues to struggle with classroom expectations, and has meltdowns at home. The conclusion: Oppositional Defiant Disorder, a label that seemed to fit the surface behaviors, but did not actually account for his neurodevelopmental profile. Over time, this framing leads to misunderstanding rather than support.
Many years later, when Winston finds community among neurodivergent peers, he discovers his actual neurotype and feels at home. Looking back, there could have been a much more positive outcome if his clinician had approached the situation in a more collaborative and comprehensive way, incorporating strengths and developmental history, considering his behavior across contexts, considering some of the more subtle signs of autism, and partnering with Jenny to better understand her observations. This could have led to better supports and a far more affirming outcome.
2) Embracing The Diversity Within Neurodiversity
A key component of the neurodiversity paradigm is recognizing that neurodiversity in general is natural and valuable, not just autism.
Many people assume that “neurodivergent” is simply a euphemism for autism, when the term involves a huge range of both inherited and acquired forms of neurodivergence like ADHD, OCD, learning disabilities, depression, and traumatic brain injury. Clinicians can consider the strengths that go along with many different diagnoses (e.g., ADHD has been associated with creativity, hypomania with productivity in certain circumstances, and sensory sensitivity with heightened auditory capacity), but we are not limited to looking at strengths.
While neurodiversity-affirming work has placed significant emphasis on strengths, there is also room within the neurodiversity paradigm to validate the genuine suffering, impairment, and distress that goes along with some types of neurodivergence—as described by Hari Srinivasan in Neurodiversity 2.0. Considering this, if clinicians subtly send the message that one particular neurotype is superior to all other types of neurodivergence, that is not genuinely neurodiversity-affirming. By giving clients room to discuss both their strengths and their struggles, and guiding them to be open to different types of neurodivergence, clinicians can engage in a genuinely affirming process.
Another aspect of embracing diversity is considering intersectionality and noting that a person’s experience of autism or other neurodivergence differs depending on other aspects of their identity and also on co-occurring conditions. Considering diversity also involves including people with complex support needs and nonspeaking Autistic people who may benefit from specific supports like Augmentative and Alternative Communication.
Consider Julian’s situation. Julian has trouble going to his high school because he experiences extreme stomach aches whenever he is around other people his age. He spends long periods of time analyzing conversations after talking with other people, even with friends, to the point that he often prefers to stay in his room alone playing video games, and socializing by text. He has always been known for detecting details and being extremely conscientious in his schoolwork.
Through drawings and discussion with Julian, his clinician might discover that he is engaging in a masking process that exhausts him, and that he needs time for rest to recover. When some people learn that he is masking, they might assume that he must be Autistic, but actually masking is not unique to autism; it’s common among people with anxiety as well.
Part of Julian’s clinician’s job will be exploring his pattern of focused interests, repetitive behaviors or stimming, difficulty adjusting to change, and sensory differences over time. For example, if, in addition to focused interests, he enjoyed engaging in Autistic play as a young child (e.g., lining up toys, looking at toys out of the corner of his eye) and also shows lifelong sensory sensitivity, that would be a clue that he might also be Autistic.
The clinician will also need to explore his social communication patterns. For example, if he only shows reduced eye contact with people he does not know well, they could be less confident in assigning an autism diagnosis, whereas if he shows consistently reduced eye contact across settings, that might be more likely to suggest autism. Eventually, his clinician might decide that, like many Autistic youth, he is both Autistic and has anxiety. He will make recommendations for both, including offering strategies for maximizing his strengths like incorporating his interest in technology into his curriculum and allowing him planned time to enjoy his own company.
3) Community Connections
The third way that differential diagnosis can be neurodiversity-affirming is through consideration of community connections.
By engaging in an affirming differential diagnosis process, clinicians can discover what communities might be most helpful for their clients and connect them to the right ones. Autistic clients might thrive by joining groups like Square Pegs, and parents of Autistic children might benefit from knowing about community resources like Ben’s Fund, and educational materials from Thinking Person’s Guide to Autism and the Autistic Self-Advocacy Network.
It is also possible that connecting people to a community that does not fit for them could be unintentionally isolating. Clients of all ages can benefit from being connected with certain influencers and role models who share their neurotype(s). For example, Bipolar clients might benefit from learning from people like Gabe Howard and ADHDers might learn from Jessica McCabe. Family members of people with various types of mental illness can work with groups like NAMI. There are also groups that focus on people with specific neurotypes and cultural backgrounds like Autism in Black and Autastic.
Another community connection that clinicians should consider in understanding differential diagnosis, is the connection between people with lived experience, researchers, and clinicians. While AuDHDers have been discussing the interaction of their Autistic and ADHD traits online for years, it is only recently that this phenomenon has started to gain attention in academic articles. While participatory research is becoming more popular, validating people who have expertise from both personal experience and professional experience is still in progress. Groups like Autistic Doctors Internation are starting to change that, and hopefully groups representing other neurotypes will follow in their footsteps.
Differential diagnosis has gotten a bad rap because some people associate it with rejecting or minimizing Autistic experience, but neurodiversity-affirming differential diagnosis is both important and necessary. When done well, differential diagnosis can counteract rather than reproduce the power imbalances that have historically led to marginalizing neurodivergent people. In fact, it can support neurodivergent people in embracing and enhancing our creative potential.
By Ramone | Stainless Images on Unsplash
