When I first began this project, I wanted to study how the flaws in healthcare diagnostic systems lead to issues in accessing accommodations. I was informed about Dr. Mackenzie Salt and his work with the Canadian Journal of Autism Equity. Dr. Salt was working at the time to create an evaluation system for services provided for autistic adults based on the International Classification of Functioning, Disability, and Health (ICF).

Hold on, what in the world is the ICF? I suddenly had a topic for research bingeing! But first, I needed to email Dr. Salt for direction. He gave me an important perspective on the purpose of diagnostic systems, and the fact that they aren’t necessarily ‘flawed.’ Diagnostic systems accomplish what they were designed to do (gather data, standardize healthcare practices, etc.), even if the outcome of that design creates barriers and is unideal for users. At this point, I started to wonder about whether different diagnostic systems created the same barriers and added that to my research list. I had a pretty good starting point, but nothing solid that I could do with the project.

[As a side note, one thing that made readings more accessible for me in this project was Bionic Reading (BR), which converts text into an eye-catching, neurodivergent-friendly format.]

I started off by researching the history of different diagnostic systems, looking to see what effect the differences in the origins of these systems could have on how they’re used today. I found out that the ICF came from the International Classification of Diseases (ICD), which is the overall health condition diagnostic system used in countries, including Canada, under agreements with the World Health Organization (WHO). The ICD began as a way to classify causes of death and provide a common language to communicate about health conditions (Clark et al., 2017). Over time, the ICD had multiple versions, each for different purposes – creating flexible and culturally-sensitive guidelines, allowing for homogeneity in research, or simplified diagnostic criteria for family practice settings.

The Diagnostic and Statistical Manual of Mental Disorders (DSM), on the other hand, was created to categorize disorders seen in mental institutions in America (Kawa & Giordano, 2012). Recent versions of the DSM and ICD have become increasingly similar because the WHO (as of 1999) required that affiliated countries standardize all of their diagnostic systems using the ICD, mental health conditions included (Clark et al., 2017). I also read a couple of articles describing patient and practitioner perspectives on diagnostic systems (Chang et al., 2018; First et al., 2018; Lewandowski & Lovett, 2014), and overall, the perspective was that they work and people find them satisfactory; but, they could be less complicated, more empathetic to individual experience, more specific and applicable to clinical settings, etc.

After all that research, I didn’t find many differences between the ICD and DSM with regards to how they affect people, but I did find similarities. The biggest of them is the fact that these systems are based on an inherently medical model: they aim to categorize and cure ‘diseases’ and ‘disorders,’ rather than describing and understanding human experiences. The way mental illnesses are defined in these diagnostic models is not representative of how these conditions work in the mind, these definitions are just concepts constructed for research and medical treatment (Kawa & Giordano, 2012).

That’s why when I heard about the ICF, and its descriptive model for defining mental health, I was hopeful for a more diverse and empathetic system. The ICF was created because diagnoses are frequently an inaccurate conceptualization of an individual’s health status, and don’t directly reflect the services they need (Reed et al. 2009). The ICF describes components of human functioning (body structures, activities and participation, environment, and personal unclassified information about individual life events) and assigns them a code that specifies the type of functioning impacted as well as severity (on a scale from 1-4, mild-severe limitation).

For example, two individuals who both have a diagnosis of Major Depressive Disorder can have entirely different sets of ICF codes. They could have different body function difficulties like sleep functions, appetite, emotional regulation, and emotional range. For activities and participation, they could have different codes representing their personal relationships, taking care of different personal hygiene tasks, and maintaining employment. Under environmental factors, their abilities could be impaired or facilitated by different people and organizations such as their immediate family, friends, health professionals, housing services, and health services (Reed et al., 2009).

I immediately resonated with this model and its potential to move healthcare systems away from labelling and medicalization and towards being more empathetic to a disabled person’s lived experience, but Dr. Salt cautioned me against jumping aboard that ship too quickly.

Dr. Salt had to change his project around using the ICF for evaluating adult autism services in Canada, largely due to the lack of systemic support. A lot of work would need to be done to implement a system like this, and not everyone is willing or able to support that.

There are other issues he mentioned to me about implementing a functional model, like accurately quantifying non-physical functioning abilities, but the biggest one was that an organization switching to a model that isn’t supported by the broader system could not be implemented effectively. In North America, every system is deeply rooted in the medical model. Schools and service companies changing in such a massive way through conversion from the DSM to the ICF would require political support that just isn’t realistically achievable… yet.

Like most systemic changes, this would have to be slow and deliberate. Even in the articles I’ve read, it was suggested that the ICF cannot overcome major problems in healthcare systems; however, it can help create a more detailed picture of where resources need to be targeted (Reed et al. 2009). While the DSM and ICD group many symptoms together into a diagnostic label, the ICF specifically lists the struggles patients have, which can each be directly linked to treatment or support options. The ICF also provides a full glossary of the signs and symptoms illnesses can have, which is something that the DSM and ICD are extremely limited in (Linden & Baron, 2008).

When the ICF is used alongside the pre-existing systems, it can serve as a more precise description of health and treatment goals. Diagnostic systems are important to administrators to enforce policy, and to doctors in communicating about patients in shorthand forms and facilitating the education of patients and their families (First et al., 2018). I still am and have been against the idea of putting labels on people that are loosely based on how they act, but I can appreciate their utility in our existing society. So, as much as the DSM pains me (and many of the disabled people I know), it’s here to stay… At least until some major systemic changes occur.

I call out the DSM specifically because when practitioners in Canada check the criteria for diagnosing mental health conditions, they tend to look at the DSM (First et al., 2018). This is somewhat concerning because the DSM-5 has included updates to criteria that make determining accommodations for students a subjective process. For one, learning disorders have all been joined under a single diagnosis that requires an individual to have difficulties in reading, writing, or math that are ‘quantifiable’ (read: low grades) when compared to people their age, and it must have begun in early school years (Lewandowski & Lovett, 2014). In previous versions of the DSM, learning disorders could be diagnosed based on memory, processing speed, executive function, and other specific struggles. Low grades weren’t a requirement, there just had to be a significant difference in personal ability and what they were achieving in class. A certain age wasn’t included either, because you can start showing signs of learning disabilities at any point during development – including after entering university!

When it comes to ADHD and autism diagnoses, the diagnostic criteria have become ambiguous. Individuals who receive an ADHD diagnosis must have ‘significantly impaired functioning,’ but there is no definition of what that means. Now that Asperger’s Syndrome and Autism Spectrum Disorder have been joined under one category in the DSM-5, it’s even harder to determine what accommodations an autistic person may need based on their diagnosis due to the diversity of people on the spectrum.

Anxiety diagnoses have the opposite problem – they’ve become too specific with a new requirement that symptoms be present for at least 6 months. However, since anxiety is not a developmental condition, symptoms often begin during university (Lewandowski & Lovett, 2014). Moving to a new city (or country), learning to live independently, and adjusting to massive social environments can be incredibly stress-inducing. With all of these significant issues being overlooked and creating ambiguity and subjectivity in the diagnoses that are needed to access accommodation, it’s no wonder that accessibility policies are variable in each postsecondary institution across Canada (NEADS, 2018).

The same way that we are going to be stuck with the DSM, having medicalization embedded in postsecondary accommodation is unlikely to leave any time soon either. Dr. Salt mentioned to me that a previous SAS coordinator at McMaster had tried to change the accommodation system using a functioning model but was unable to from the lack of organizational and systemic support.

However, the ICF can serve as a sort of ‘in-between’ point for educators and health professionals (Tomas et al. 2018). The ICF and UDL are based on similar principles: Human diversity is seen as the standard, not the exception. Both emphasize the impact of an individual’s environment on their functioning (something previous disability models did not do). They also both aim to increase an individual’s ability to participate by suggesting environmental interventions, rather than ‘fixing’ a disabled person’s condition.

The ICF, or ICF-based questionnaires, can be used to collect data on individual student needs using language that healthcare professionals are familiar with. Healthcare researchers can then interpret this data and publish conclusions and recommendations. Using those recommendations, educators can then apply UDL principles based on what their students need. (Tomas et al. 2018). This does require educating university educators and administration in UDL in the first place, but that’s a movement that has already begun at McMaster; for instance, the Forward with FLEXibility resource seeks to guide educators toward accessible education by Focusing on Learning and Eliminating eXclusion.

At this point, I started to get an idea of something I could do with this project. I can’t effectively advocate for the ICF to replace the medical model for accommodations at McMaster, but I can create something based on the ICF that can help students seeking accommodations. I ended up creating a self-report sheet for students looking to get accommodations at McMaster. I used many functioning-based questionnaires from a database (HealthMeasures, 2022), taking questions related to education and putting together an Excel sheet that takes a student’s responses and suggests accommodations according to their responses.

I thought that this would be an easier way for students to reflect on their accommodation needs (especially for those of us who have no idea what our needs are). Many of us walk into our first SAS appointment with our doctors’ notes and program coordinators suggest accommodations that may suit us based on our disability or ask us if we have any ideas of our own, which can be overwhelming. Hopefully by using this sheet students can be more prepared and knowledgeable about what might be useful for them.

In case accommodation coordinators don’t use this sheet themselves, students can access it directly at this link if anyone wants to use it for self-reflection before their SAS appointments! 

Baron, S., & Linden, M. (2008). The role of the “International Classification of Functioning, Disability and Health, ICF” in the description and classification of mental disorders. European Archives of Psychiatry and Clinical Neuroscience, 258(S5), 81–85. https://doi.org/10.1007/s00406-008-5013-3

Chang, K. H., Chi, W. C., Huang, S. W., Chang, F. H., Liao, H. F., Escorpizo, R., & Liou, T. H. (2018). Perceptions and attitudes towards the implementation of a disability evaluation system based on the international classification of functioning, disability, and health among people with disabilities in Taiwan. Disability and Rehabilitation, 41(13), 1552–1560. https://doi.org/10.1080/09638288.2018.1442506

Clark, L. A., Cuthbert, B., Lewis-Fernández, R., Narrow, W. E., & Reed, G. M. (2017). Three approaches to understanding and classifying mental disorder: ICD-11, DSM-5, and the National Institute of Mental Health’s Research Domain Criteria (RDoC). Psychological Science in the Public Interest, 18(2), 72–145. https://doi.org/10.1177/1529100617727266

First, M. B., Rebello, T. J., Keeley, J. W., Bhargava, R., Dai, Y., Kulygina, M., Matsumoto, C., Robles, R., Stona, A. C., & Reed, G. M. (2018). Do mental health professionals use diagnostic classifications the way we think they do? A global survey. World Psychiatry, 17(2), 187–195. https://doi.org/10.1002/wps.20525

Kawa, S., & Giordano, J. (2012). A brief historicity of the Diagnostic and Statistical Manual of Mental Disorders: Issues and implications for the future of psychiatric canon and practice. Philosophy, Ethics, and Humanities in Medicine, 7(1), 2. https://doi.org/10.1186/1747-5341-7-2

Lewandowski, L. J., & Lovett, B. J. (2014). The new Diagnostic and Statistical Manual of Mental Disorders, DSM-5: Implications for accommodations requests. The Bar Examiner, 83(1), 42–54. https://thebarexaminer.ncbex.org/article/march-2014/the-new-diagnostic-and-statistical-manual-of-mental-disorders-dsm-5-implications-for-accommodations-requests/

NEADS. (2018, July). Landscape of accessibility and accommodation in post-secondary education for students with disabilities. National Educational Association of Disabled Students. https://www.neads.ca/en/about/media/AccessibilityandAccommodation%202018-5landscapereport.pdf

Reed, G. M., Spaulding, W. D., & Bufka, L. F. (2009). The relevance of the International Classification of Functioning, Disability and Health (ICF) to mental disorders and their treatment. Alter, 3(4), 340–359. https://doi.org/10.1016/j.alter.2008.11.003

Tomas, V., Cross, A., & Campbell, W. N. (2018). Building bridges between education and health care in Canada: How the ICF and universal design for learning frameworks mutually support inclusion of children with special needs in school settings. Frontiers in Education, 3, 18. https://doi.org/10.3389/feduc.2018.00018