How to Create a More Neurodiversity-Affirming Evaluation

How to Create a More Neurodiversity-Affirming Evaluation

Saturday, June 01, 2024
How to Create a More Neurodiversity-Affirming Evaluation

 

 

People are wonderfully diverse. Bodies, brains, abilities, experiences…they’re all strikingly different from one person to the next. The last thing a competent, compassionate practitioner would want to do is to pathologize that individuality—and yet the process of identifying neurodevelopmental conditions and designing supports can leave some neurodivergent people feeling isolated and stigmatized.

Bryden Carlson-Giving, OTD, OTR/L is one of a growing number of health and education professionals who are aiming to make the evaluation process more affirming for neurodivergent individuals. A neurodivergent practitioner himself, Dr. Carlson-Giving is the creator of  Neurodivergent Nexus, a knowledge translation tool to support affirming evaluation, assessment, and intervention practices. 

Building a neurodiversity-affirming evaluation, he says, begins with how we view differences and disabilities. When clinicians and educators start with a medical model of disability—the perspective that differences in functioning are the result of an underlying abnormality that needs to be corrected—it’s easy to see a neurodivergent child as a collection of impairments and deficits. 

 

Alternative models for framing neurodiversity include a social model that emphasizes the ways social and environmental barriers cause disability, and a cultural model that emphasizes how disability is experienced within specific cultures—and how disability can create its own culture.  

 

When caregivers adopt a deficit-based view, the child’s self-image can ultimately be harmed. “It leads to really low mental health, low self-esteem, low self-identity. We’re setting up neurodivergent students and clients for failure, instead of having a healthy way of living that isn’t dominated by what other people think. We may be taking away the chance to have health defined on their own terms.” 

The medical model of disability doesn’t necessarily address what the individual wants to address or prioritize. And it does not consider the social environment, which may not be providing enough support to allow neurodivergent people to participate in areas where they want to do so. 

Yet, in many systems and settings, eligibility for services may hinge on meeting deficit-oriented diagnostic criteria. In such circumstances, how can clinicians and educators make the evaluation process more affirming for neurodivergent students and their families?  

Dr. Carlson-Giving shares these recommendations from the forthcoming book, Neurodiversity Affirming Occupational Therapy Practice: An Anti-Ableist Approach, to be published by Jessica Kingsley Publishers: 

 

1. Start from a place of trust and understanding.  

“When you walk into the room, your first step is to believe the individual and their experience, especially if someone is open to talking about feeling misunderstood by society and feeling they can’t authentically be who they are,” Dr. Carlson-Giving says.

“Oftentimes in schools, I’ll have meetings with families and they’ll share… ‘When we met with our outpatient OT or with our pediatrician, we felt like we were not heard. We told them about masking, and the problematic features of an assessment tool and how it made us feel a lot worse about our child. We felt like they were not listening because they knew better.’” 

In neurodiversity-affirming practice, practitioners center the lived experience of the individual. “It’s the foundation of the entire evaluation,” Dr. Carlson-Giving says.  

 

2. Challenge accepted beliefs about what health and wellness look like.

What people believe about the nature of health and wellness affects the way they conduct assessments, write goals, and provide services. Your patient, client, or student may have a different definition of what health looks like for them and what contributes to their sense of well-being.

To look at health and wellness from your client’s perspective, you may need to dismantle some of what we have all learned about what “normal” looks like, Dr. Carlson-Giving points out. 

You may also want to explore your own privilege and your own identities—just as you might do when building your cultural sensitivity in other areas. This kind of reflection can be uncomfortable and challenging because it may involve the discovery that some of our beliefs are rooted in a type of ableism—the view that what is neurotypical is inherently healthier than neurodivergence. 

 

3. Select appropriate assessment tools.

One of the most affirming steps you can take is to ensure you are using assessments that consider the student’s lived experience and support their involvement in goal setting.

“My favorite assessment tools within pediatrics are the Perceived Efficacy of Goal Setting (PEGS) System, the Dynamic Assessment of Social Emotional Learning (DASEL), and the Visual Activity Card Sort,” says Dr. Carlson-Giving.

It's important to know that neurodivergent people sometimes mask or camouflage their characteristics during standardized assessments. That means test results may not accurately reflect an individual’s capabilities, daily experience, or needs. It’s also important to understand that many standardized tools are mapped to deficit-based diagnostic criteria. Information about a person’s strengths, and about environmental supports to improve their quality of life, may need to be gathered through other means.

One additional concern has been raised by some neurodiversity experts: “Standardized assessments often compare disabled and neurodivergent individuals to nondisabled individuals, making neurotypicality an implicit goal of therapy,” Dr. Carlson-Giving explains.

In many settings, resources and supports are linked to a formal diagnosis. For that reason, many autistic children and adults, as well as their families and advocates, say diagnosis matters (Rutherford & Johnston, 2022). While standardized tests are not always needed to access services, they are sometimes the key that opens the diagnostic door. Using function-based assessments such as the Goal-Oriented Assessment of Lifeskills (GOAL™) can open those doors while minimizing harm. A whole-child practice always strives to make room for individuality, even in a controlled assessment environment. 

 

4. Emphasize strengths in your report. 

“Language influences everything,” says Dr. Carlson-Giving. “People forget that how we talk about a diagnosis, especially when it’s new, will often translate into the parents’ or the family’s view of their child,” he explains.

An affirming report presents an accurate portrayal of a child’s strengths. It describes the child’s communication differences, interests, and competencies in neutral, non-judgmental terms. Instead of labeling a child’s behavior “restrictive and repetitive” in the narrative portion of a report, you might simply describe what the child enjoys doing: Artfully arranging toy ponies, for example. 

Dr. Carlson-Giving also recommends placing test scores at the end of a report so that more emphasis is given to the client’s goals, strengths, and interests.

More research needs to be done to clarify the benefits of strengths-based reporting, but there is evidence to suggest that when autistic individuals are supported in identifying and using their strengths, it can lead to “better quality of life, well-being, and mental health” as well as “feelings of self-worth…positive affect and self-esteem” (Taylor et al., 2023).  

 

5. Write affirming, empowering goals.

A core tenet of neurodiversity-affirming practice is writing goals that are meaningful to the individual at the center of the evaluation. 

“You’re asking probing questions,” Dr. Carlson-Giving says. “You’re asking what’s meaningful for them. You’re asking what they actually want to participate in, without any thought of what you think they should be participating in, or where they could be participating more or more efficiently.”

One thing to keep in mind: Neurotypicality itself shouldn’t be the goal. In neurodiversity-affirming practice, goals do not focus on correcting or reducing autistic traits or learning to be more neurotypical. Instead, goals reflect the priorities of the autistic individual and the family. They often aim to build self-advocacy skills, self-esteem, or mental health. Goals can also focus on aligning supports and environmental adaptations with a person’s expressed needs

When writing goals, Dr. Carlson-Giving notes, you’re asking about strengths and interests in terms that align with your professional discipline. “From an OT perspective, we’re asking, ‘What are the best parts of your day? What are the most challenging parts of your day? In your dream scenario, what would you like to get better at?’”

Collaborating on goal setting in this way builds self-advocacy and a sense of agency within the individual being evaluated. “It’s essential that the client has the opportunity to exercise their own self-determination and say how they want to experience the world and make decisions for themselves,” he explains.

In his research, Dr. Carlson-Giving illustrates how goals can be rewritten so they’re more accepting and supportive of neurodiversity:  

 

Non-affirming or Ableist Goal  

Neurodiversity-Affirming Goal 

Explanation  

The student will tolerate x minutes of sensory stimulation, showing less sensitivity.  

The student will advocate for herself, communicating preferences and approval/disapproval. 

Desensitization is not considered a neurodiversity-affirming goal because it asks a child to ignore or suppress their response to sensory stimulation, which can involve dissociating from bodily sensations or forcing themselves to tolerate sensations that hurt or are deeply unpleasant. Changing the focus to self-advocacy helps a child learn to protect themselves and advocate for their own sensory needs.  

The student will explore new areas of play interests 

The student’s family will express satisfaction with their ability to join with the student in shared, meaningful play.  

The student’s neurodivergent play is a valid pursuit, and it is not affirming to attempt to reroute or reshape interests so they appear more neurotypical. The revised goal shares the work with the student’s family and peers to support engagement with the student through play.  

(Carlson-Giving, 2023) 

 

Key Messages 

These five steps are just a starting place.

Centering the lived experience of children and their families, redefining health from your client’s perspective, selecting appropriate assessment tools, adopting a strengths-based approach, and writing empowering goals are key features of neurodiversity-affirming practice. These strategies can be employed by occupational therapists, school psychologists, special educators, speech-language pathologists, and any other professional who serves neurodivergent children and adults.

Creating more affirming evaluations will take careful listening, learning, and reflecting. Parts of the process may require thinking anew about long-held practices. But early evidence suggests that there are likely to be significant benefits—both for you and for your marvelously diverse students.  

 

 

 

Research and Resources:

 

Carlson-Giving, B. (2024, May 5). Personal interview.  

Carlson-Giving, B. (2023). Embracing neurodivergent occupations and empowering disabled voices: A knowledge translation tool to support neurodiversity-affirming occupational therapy practice and challenge ableism within the profession. OpenBU. https://hdl.handle.net/2144/46622 

Santhanam S. P. (2023). An interactive and neurodiversity-affirming approach to communication supports for autistic students through videogaming. Language, Speech, and Hearing Services in schools, 54(1), 120–139. https://doi.org/10.1044/2022_LSHSS-22-00027  

Rutherford, M. & Johnston, L. (2022). Rethinking autism assessment, diagnosis, and intervention within a neurodevelopmental pathway framework. In M. Carotenuto, Editor, Autism spectrum disorders – Recent advances and new perspectives. University of Campania. https://www.intechopen.com/chapters/84848 

Taylor, E. C., Livingston, L. A., Clutterbuck, R. A., Callan, M. J., & Shah, P. (2023). Psychological strengths and well-being: Strengths use predicts quality of life, well-being and mental health in autism. Autism, 27(6), 1826–1839. https://doi.org/10.1177/13623613221146440 

 

 

0 viewed
Comments
Leave your comment
Your email address will not be published