Neurodiversity Profiling:

Bridging the gap between the medical model of disability and the person-centered approach in neurodivergent functioning.

Renowned research engineer and nuclear physicist Emerson Pugh said:

“If the human brain were so simple that we could understand it, we’d be so simple that we could not” (Rose, 1980).

Of the 8 billion people on earth in 2023[1], not one person is the same as another. Even identical twins that were once thought to be genetically the same have been found to differ by about 5.2 genetic mutations (Jonsson et al, 2021).

As a species humans are complicated and diverse. There is diversity in gender and gender expression, sexual orientation, ethnicity and language. So too there is diversity in neurological thinking and functioning. The concept at the heart of the definition of neurodiversity is that there is a natural variation in the ways that all humans think and function.

[1] https://www.un.org/en/global-issues/population

Human head Neurodiversity Profiling

Yet, the language commonly used to describe this natural variation is rooted in the medical model. We talk about Autism Spectrum DISORDER (ASD) and Attention-Deficit/Hyperactivity DISORDER (ADHD) and Developmental Co-ordination DISORDER (DCD). We seek diagnoses of these so that the individual can be treated or cured so they can be, what? “Normal”?

As a Registered Nurse my own professional background is rooted in the medical model, and I am absolutely not suggesting that there is no role for medical management, diagnosis and treatment.

I am also not suggesting that neurodivergence is “just” a minor variation in neurological thinking and functioning. For many, the complexity of their neurodivergence and co-morbid conditions is profoundly disabling, and they need a great deal of support.

But what I observe is that an over-reliance on the medical model contributes to the stigma that keeps neurodivergent individuals isolated and creates a barrier for them getting the support they need to be able to function optimally.

Furthermore, an over-reliance on the medical model, particularly in the employment context disadvantages those that may never have been able to obtain a diagnosis. For example, a worker who believes they have an ADHD-type brain, would usually be required to provide evidence of a diagnosis, such as a medical certificate or letter from their doctor, before reasonable adjustments to the work, requested under the Disability Discrimination Act would be considered. A recent survey of neurodivergent workers in the UK[1] revealed that 40% of neurodivergent workers say their neurodivergence impacts them most days at work and 32% reporting that they felt unable to disclose their neurodivergence to their employer with 10% reporting their disclosure had met with a poor response.

But as an adult in Australia, obtaining a clinical diagnosis of neurodivergence is challenging. The testing can only be undertaken by specialist trained psychiatrists and/or clinical psychologists and there are no Medicare rebates available which puts a diagnosis out of reach for many.

It is estimated that 15 – 20% of the world’s population is neurodivergent (Doyle, 2020) but most are not diagnosed in childhood because their neurological functioning as a child, whilst different and perhaps challenging at times, may not have been “different enough” to put them on the radar of their teachers and care givers/parents.

Alternatively, they may have been misdiagnosed with a mental health condition such as anxiety, depression, bipolar disorder or an eating disorder.

This is particularly common in females with ADHD who often have the predominantly inattentive type, which is associated with less obvious symptoms and disruptive behavior (Biederman et al., 2002). They are more likely to be the daydreamers and doodlers and are also less likely than males to exhibit physical aggression and other externalizing, physical behaviors (Rucklidge, 2010).

Similarly, females with ASD typically present differently from males and tend to have more restricted interests and mimic peers’ social interactions and non-verbal communication without understanding them (Dean et al., 2017). So they are better at masking their differences. Additionally, females with ASD have higher levels of social motivation (Sedgewick et al., 2016) and lower levels of repetitive behavior (Harrop et al.,2015) which may contribute to the under and/or misdiagnosis of neurodivergent females.

To further complicate the diagnostic process under the medical model adverse childhood experiences such as abuse and neglect, foetal alcohol syndrome and other environmental factors and traumatic brain injury can all result in difficulties with attention, concentration, socialization, memory, cognition that can present like neurodivergence.

Often these are interconnected, and the symptoms of one can be mistaken for those of another, resulting in misdiagnosis (e.g., Bishop et al., 2008).

One of the primary limitations of the medical model is that diagnosis is based on a collection of symptoms, which are determined by international sets of criteria like those set out in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) and the International Classification of Diseases (Tenth Revision (ICD-10).

These oversimplify the individual experience and neglect the fact that most neurodivergent individuals have more than one type of neurodivergence (Cleaton and Kirby, 2018). So a person may satisfy the diagnostic criteria for ADHD (combined type), but also have sub-clinical Autism and Dyslexia traits. Or a person may fully satisfy the diagnostic criteria of Autism, ADHD and DCD.

The diagnostic criteria also focus on the signs and symptoms that can be observed by others such as parents, caregivers, teachers, co-workers and the clinician undertaking the assessment. So observable signs such as restlessness and fidgeting during the assessment might satisfy one of the required (DSM-5) diagnostic criteria of ADHD, but a person’s experience of emotional dysregulation, rejection sensitivity or delayed circadian rhythm, which are often more impactful for the individual than the observable signs do not factor in the diagnosis.

Neurodiversity Mind Map

It is important to understand that the absence of a formal diagnosis does not make the individual any less neurodivergent.

Leading neurodiversity researcher, campaigner and author, Prof. Amanda Kirby developed this Neurodiversity Mind Map to illustrate the complexity of neurodiversity and also highlight that there is a balance of both challenging or negative traits and positive traits in all neurodivergent people.

One of the risks of relying too heavily on the medical model is that in attempting to treat and cure people of their neurodivergence so that they can function “normally”, in much the same way as we would cure a person of a chest infection with anti-biotics, we will throw the baby out with the bathwater and lose the benefit of those positive traits and strengths as well as reducing the visible challenging signs and symptoms.

So what is the answer?

There will always be the need for accurate, timely and accessible diagnosis and treatment for those that want it and there is still much work and advocacy needed in this space at a government policy level to eliminate the inequities of current systems.

But not everyone needs to be put in box with an ADHD, ASD, Dyslexia, Dysgraphia, Dyspraxia, Dyscalculia label.

Not everyone needs a diagnosis.

Apart from the personal desire to have this insight into oneself which can in itself be cathartic, it can be argued that that the only practical reason for a person to go through the formal clinical diagnostic process is so that they can be prescribed the medication that might help with their more troubling symptoms.

Otherwise, what is important is working out what the person’s own unique strengths are and capitalizing on these whilst also identifying the areas that challenge them, and then providing support and adaptations to help them manage these.

The Neurodiverse Safe Work Initiative has partnered with Do-IT Solutions to bring the Neurodiversity Workplace Profiler to Australia. This is a specially customized version of the profiler which has been adapted to the Australian context and it is available now through our website here:

https://neurodiversesafework.com.au/the-neurodiversity-workplace-profiler/

Completing the Neurodiversity Workplace Profiler will take the individual about an hour and at the end they will be able to access and download a report that maps out their own unique neurodivergent profile as well as access a tailored package of resources to support their needs, including one-on-one Professional Coaching based on their report.

So, for example, if organization and time management is something the individual has reported they struggle with, there is an information sheet that provides guidance and tools to help with these. Likewise if a person has scored highly for ASD traits, there is an educational resource that explains the critical information about ASD and suggests the types of adjustments to work that can be helpful.

Users can also download a separate report, the “Work with me” passport that they can give to their employer to help inform discussions about achieving their best performance at work.

For more information about the Neurodiversity Workplace Profiler contact us today by email at hello@neurodiversesafework.com.au or book in some time for a complimentary one-on-one meeting here https://neurodiversesafework.com.au/the-neurodiversity-workplace-profiler/

To watch the launch webinar of the Neurodiversity Workplace Profiler with special guest speaker, Prof Amanda Kirby look here:

https://neurodiversesafework.com.au/the-neurodiversity-workplace-profiler/

Catherine Lee (She/Her)­
Director and Founder
RN dipOHN GradCertMgt GradDipOHS COHSProf
The Neurodiverse Safe Work Initiative

 

 

References

APA. (2013), Diagnostic and Statistical Manual of Mental Disorders, 5th ed., American Psychiatric Publishing, Washington, DC 

Biederman, J., Mick, E., Faraone, S. V, Braaten, E., Doyle, A., Spencer, T., Wilens, T.E., et al. (2002), “Influence of Gender on Attention Deficit Hyperactivity Disorder in Children Referred to a Psychiatric Clinic”, American Journal of Psychiatry, Vol. 159 No. 1, pp. 36–42.

Cleaton, M.A.M. and Kirby, A. (2018), “Why Do We Find it so Hard to Calculate the Burden of Neurodevelopmental Disorders?”, Journal of Childhood & Developmental Disorders, Vol. 4 No. 3, pp. 1–20

Dean, M., Harwood, R. and Kasari, C. (2017), “The art of camouflage: Gender differences in the social behaviors of girls and boys with autism spectrum disorder”, Autism, Vol. 21 No. 6, pp. 678–689.

Doyle, N., & McDowall, A. (2021). Diamond in the rough? An “empty review” of research into “neurodiversity” and a road map for developing the inclusion agenda. Equality, Diversity and Inclusion: An International Journal, 41(3), 352-382. https://doi.org/10.1108/edi-06-2020-0172

Harrop, C., Gulsrud, A. and Kasari, C. (2015), “Does gender moderate core deficits in ASD? An investigation into restricted and repetitive behaviours in girls and boys with ASD”, Journal of Autism & Developmental Disorders, Vol. 45 No. 11, pp. 3644–3655.

Jonsson, H., Magnusdottir, E., Eggertsson, H. P., Stefansson, O. A., Arnadottir, G. A., Eiriksson, O., Zink, F., Helgason, E. A., Jonsdottir, I., Gylfason, A., Jonasdottir, A., Jonasdottir, A., Beyter, D., Steingrimsdottir, T., Norddahl, G. L., Magnusson, O. T., Masson, G., Halldorsson, B. V., Thorsteinsdottir, U., … Stefansson, K. (2021). Differences between germline genomes of monozygotic twins. Nature Genetics, 53(1), 27–34. https://doi.org/10.1038/s41588-020-00755-1

Rucklidge, J.J. (2010), “Gender differences in Attention-Deficit/Hyperactivity Disorder”, The Psychiatric Clinics of North America, Vol. 33 No. 2, pp. 357–373.

Sedgewick, F., Hill, V., Yates, R. and Pickering, L. (2016), “Gender Differences in the Social Motivation and Friendship Experiences of Autistic and Non-autistic Adolescents”, Journal of Autism and Developmental Disorders, Springer US, Vol. 46 No. 4, pp. 1297–1306.

WHO. (1993), The ICD-10 Classification of Mental and Behavioural Disorders: Clinical Descriptions and Diagnostic Guidelines, World Health Organization, Geneva.

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