Dr Freya Spicer-White discusses the changing perceptions surrounding discrete diagnosis.
In the early 2000s as an Assistant Psychologist, and part of multi-disciplinary teams, I joined many discussions around an Autism or Asperger’s diagnosis. The criteria used to differentiate between these two conditions, outlined in the American Psychiatric Association’s (APA) ‘Diagnostic and Statistical Manual of Mental Disorders 4th Edition’ (DSM-4), are summarised in the table below.
Asperger’s: a lost diagnosis
In 2013, the APA removed Asperger’s, offering instead the DSM-5 diagnosis: Autism Spectrum disorder. Similarly, in 2022, the eleventh revision of the International Classification of Diseases (ICD-11), brought childhood autism and Asperger’s under the single category of Autism Spectrum disorder.
Consequently, Asperger’s became a lost diagnosis. For some who identified with the ‘Aspie’ label, this was frustrating, confusing and invalidating. Others across the Autism community celebrated the removal of Hans Asperger’s name from the autism lexicon, due to the uncovering of the Austrian paediatrician’s potential collaboration with the Nazi regime.
Neurodiversity: A new paradigm
We are now in an interesting, exciting time; witnessing and influencing the development of the Neurodiversity paradigm. The term was first coined in 1988 by Australian Sociologist, Judy Singer (updated in 2023), who calls it ‘the limitless variety of human minds on the planet’.
Neurodiversity Infinity Rainbow
This concept of neurodiversity describes the naturally occurring variations in human brains that exist across every culture, race and gender. Neurodivergence encapsulates such differences as Autism, ADHD, dyslexia, and when it existed as a diagnostic construct, Asperger’s also sat under the neurodivergence umbrella.
The neurodiversity paradigm has begun to change perceptions about the usefulness of a discreet diagnosis model.
Are discreet diagnoses useful?
- Discreet diagnoses do not fully capture the range of an individual’s needs. The DSM-5’s opening statement regarding autism, ‘Persistent deficits in social communication,‘ tells us nothing of that individual’s profile or what support will be of benefit.
- Two young people with the same diagnosis can have widely different experiences. Consider gender, we now know there can be vastly different presentations in Autistic males and females (Hendrinkx, 2015).
- Discrete diagnostic categories do not allow for overlap across conditions. Research shows that 22–83% of autistic children meet the diagnostic criteria for ADHD (Matson et al. 2013), and 30–65% of children with ADHD will have autistic traits (Ronald et al. 2008)—suggesting that co-occurrence is the rule, not the exception.
- This approach does not account for the compounding nature of experiencing multiple differences (Kirby, 2021).
Therefore just as Asperger’s has been lost to diagnostic history, perhaps all ‘diagnostic taxonomies that classify individuals in terms of discrete categories are ill-suited‘ (Astle et al., 2022). And maybe they could have a more significant impact?
Do discrete diagnoses limit children’s opportunities?
Discrete diagnoses may pigeonhole a young person into specialised programmes, therapies, ‘units’ or even schools which do not fully meet their needs, or conversely, exclude them from resources or support. An Autistic young person might be placed in a special education school that focuses heavily on life skills, but neglects academic enrichment, even if they are academically gifted.
Additionally, if the support that young person receives solely focuses on the areas of need associated with their diagnosis, they may not receive any support in other areas that fall outside of that traditional diagnostic construct.
Furthermore, as diagnoses tend to conceptualise ‘impairments’, the strengths of the young person may not be fully recognised. This could lead to a limiting of the opportunities to develop these strengths to their full potential, which in turn, could have a negative impact on the young person’s self-esteem and self-efficacy.
The limitations imposed by a single diagnosis could also extend to career opportunities. If a young person is seen only through the lens of their discrete diagnosis, they might be steered away from career paths or further education. Employment statistics for autistic adults, illustrate these limitations vividly, with only 21.7% in any form of paid employment (Office for National Statistics: Outcomes for disabled people in the UK: 2020).
Do discrete diagnoses limit expectations?
When young people are allocated support according to a single diagnostic label in a classroom, there is a risk that teachers might apply stereotypes or over-generalisations about that condition.
When grouped together in a ‘unit’ or class, students may be treated a certain way because they share a diagnosis, rather than according to their unique personal profile. This ‘one-size-fits-all’ approach may result in teaching strategies not tailored to individual needs, which can therefore hinder students’ potential for growth and development.
If a teacher or parent has preconceived beliefs linked to a specific diagnosis—for example that all autistic children are gifted in mathematics but lack creativity—they may not expect a young person to have specific needs in maths, or be able to be successful in more creative endeavours.
This could be further compounded if it’s believed that a young person is not capable of achieving at the same level as their neurotypical peers. Teachers may not provide the same level of academic challenge, and parents might not encourage independence skills, resulting in a self-fulfilling prophecy where young people achieve at a lower level, simply because less is expected of them.
A way forward
Understanding neurodivergent differences and individual functioning allows for a more thorough and affirmative view of the young person’s abilities and challenges, which leads to individualised support and access to a greater range of opportunities. This can enable the young person to achieve their fullest potential.
By becoming more keenly aware of the highly idiosyncratic nature of neurodivergence and its numerous different presentations, ranging from specific strengths to complex needs across all domains of functioning, we begin to break free from the constraints of a discrete-diagnosis mindset. The discrete diagnosis of Asperger’s has been lost, maybe it is time for a total transdiagnostic revolution?
Author: Freya Spicer-White
Freya Spicer-White
Dr Freya Spicer-White Head of Neurodiversity Practice and Standards at Outcomes First Group.
LinkedIn: https://www.linkedin.com/in/freya-spicer-white-ab5147216/?originalSubdomain=uk
