Thread by @Richard_Autism

@siantutors Sorry, what are you talking about how "PDA Profile of ASD" is Schroedinger's Autism (joke)?

How I presently feel towards diagnostic categories, I think they could all be fairly described as "Schroedinger's diagnosis".

@siantutors "Hyman (2014) described diagnostic categories as ‘transiently useful fictions’."

Rutter & Pickles (2016, p401).

@siantutors Just how useful are diagnostic categories for understanding people & informing support packages?

I would say generally, not good to both questions.

@siantutors For example, a "PDA Profile of ASD" is meant to be diagnosed:
1) it's meant to be used 24/7 to describe a person's behaviours.
2) thus inform relevant support strategies.
In my view PDA & other diagnostic categories simply do not do these two things well.

@siantutors I will focus on second reason first, to inform strategies/ treatment options. In relation to PDA, I argue here that PDA strategies replicate good practice strategies which are practiced independently of PDA:
researchgate.net/publication/33…

@siantutors "Accordingly, the survey respondents found the DSM much less useful for treatment selection and determining prognoses"
First et al 2019, p161.

@siantutors "the lack of alignment between DSM diagnoses and applicable treatments, each of which compromise the DSM's utility for treatment selection and determining prognosis"
First et al 2019, p161.

@siantutors "limitations of a categorical approach to diagnosis include ... lack of treatment specificity for the various diagnostic categories."
APA 2013, p733.

@siantutors Most strategies/ "treatments" are issues-symptom specific, not diagnosis specific.

Which makes a mockery of how diagnostic categories are need to inform "treatment" plans.

@siantutors The point that a diagnostic categories should better explain aspects of a person, better than other diagnostic categories. Hence, allow a person to better understand themselves. I think this generally highly questionable.

@siantutors An example, take "PDA Profile of ASD". Many people are saying PDA better explains them autism. Why is this, because in my view PDA represents non-autism features being confused as autism features. As these non-autism features are typically not covered in autism assessments.

@siantutors I am including things, like
anxiety
manipulative-strategic avoidance behaviours
comfortable in roleplay
lability of mood-rapid mood changes
obsessively focusing on others
harassment/ stalking/ stealing/ other acts of violence
etc.

@siantutors Image 1 is from Soppit 2021, p299.
Image 2 is from O'Nions 2013, p93.
Image 3 is from Woods, 2021, p12.

@siantutors To give an indicator that PDA features are non-autism features, which are typically not covered in autism assessments; see the below 4 images on poll results on various PDA features. ALL 4 poll results do NOT endorses the features being viewed as autism features.

@siantutors But why are such features being typically missed in autism assessments?
Obvious one, those is that they are not autism-features
More important to the point I wish to make, is that typically diagnostic category assessments OFTEN miss pertinent aspects of a person's spikey profile.

@siantutors "review of various mental functions can aid in a more comprehensive mental status assessment by drawing attention to symptoms that may not fit neatly into the diagnostic criteria suggested by the individual's presenting symptoms,...

@siantutors "...but may nonetheless be important to the individual's care."
APA 2013, p733.

@siantutors The issue of missing important parts of a person's spiky profile is sufficient to warrant APA to make cross categorical tools!

See the link below for an example on of the tools.
psychiatry.org/File%20Library…

@siantutors "limitations of a categorical approach to diagnosis include the failure to find zones of rarity between diagnoses (i.e., delineation of mental disorders from one another by natural boundaries), the need for intermediate categories like schizoaffective disorder,..."

@siantutors "... high rates of comorbidity, frequent not-otherwise specified (NOS) diagnoses, relative lack of utility in furthering the identification of unique antecedent validators for most mental disorders,"
APA 2013, p733.

@siantutors "The historical aspiration of achieving diagnostic homogeneity by progressive subtyping within disorder categories no longer is sensible; like most common human ills, mental disorders are heterogeneous at many levels, ranging from genetic risk factors to symptoms.”
APA 2013, p12

@siantutors “Although some mental disorders may have well-defined boundaries around symptom clusters, Scientific evidence now places many, if not most, disorders on a spectrum with closely related disorders that have shared symptoms, shared genetic and environmental risk factors,..."

@siantutors "... and possibly shared neural substrates (perhaps most strongly established for a subset of anxiety disorders by neuroimaging and animal models)."
APA 2013, p6.

@siantutors “However, in the absence of clear biological markers or clinically useful measurements of severity for many mental disorders, it has not been possible to completely separate normal and pathological symptom expressions contained in diagnostic criteria."
APA 2013, p21.

@siantutors These are points that many will be familiar with, that psychological based characteristics exist as continuums in human populations & therefore most Disorders are also continuums within human population...

@siantutors ... That it is often arbitrary-difficult to differentiate "severity" in many characteristics & often in differentiating between different characteristics...

@siantutors ... This makes makes a mockery of claims identifying a diagnostic category as being objective. Especially when diagnostic overshadowing & diagnostic substitution occurs. That it is clinicians who either misdiagnose - miss diagnosing various diagnostic constructs like autism...

@siantutors ... We know that identifying diagnostic constructs is inherently subjective, when a clinician's bias is often a factor in not diagnosing various diagnostic categories.

@siantutors "Five themes were identified as (parental) perceived barriers to diagnosis, namely compensatory behaviours, parental concerns, others’ perceptions, lack of information/resources and clinician bias."
Lockwood Estrin et al 2021, 454

@siantutors "American state-to-state differences in prevalence and rise in numbers are striking and highlight the wide range of factors impacting diagnosis rates (Sheldrick & Carter, 2018)...

@siantutors "... Diagnostic substitution has been suggested; as autism diagnoses have increased, a parallel drop can be seen in diagnoses of intellectual disability, in some places."
Happé & Frith 2020, p220.

@siantutors "These problems with applying the DSM-IV Asperger disorder criteria result in wide variation in how the term Asperger disorder/syndrome is used in practice. A study by Lord and colleagues8 showed that the best predictor of which autism spectrum diagnosis a person received..."

"... (Asperger disorder, PDD-NOS, or autistic disorder) was which clinic the individuals went to, rather than any characteristic of the individual."
Happé 2011, p541.

The point I establishing is that identifying a diagnostic category is intrinsically a subjective process, i.e., it is not objective at all.

The inherent subjectivity when identifying diagnostic categories, with the manifold-continuum natures of features described in diagnostic categories & how diagnostic categories fundamentally often miss important aspects of a person's spiky profile...

... contribute to explaining why most people who have one diagnostic category diagnosed, will have at least 2 diagnostic categories diagnosed...

... This matters because co-occurring diagnostic categories often interact, affecting presentation of features; such as lessening/ increasing symptom severity, or creating new features which are more problematic than original features of co-occurring diagnostic categories...

Link to relevant article discussing this, in the context of autism.
researchgate.net/publication/35…

"Although the presentations might appear similar, anxiety within autism spectrum disorder is well known to have particular features that often set it apart from anxiety in other contexts. Comorbid anxiety can be associated with factors such as sensory sensitivity and cognitive.."

"... misappraisal, and can be experienced as particularly intense and overwhelming by a child with autism spectrum disorder. In turn, this overwhelming anxiety can contribute to emotional dysregulation or avoidant and controlling behaviour.21,22"
Green et al 2018, p459.

"... identification of mental health problems in autism can be challenging for a number of reasons (Helverschou & Martinsen, 2011; Rosen et al., 2018). Autistic individuals frequently have difficulties conveying information about their emotional states or levels of anxiety...

"... (Hollocks et al., 2019); mental health problems may present in atypical or unusual ways (Kerns et al., 2020; Postorino et al., 2017) and may not always be easily observable to families, caregivers or clinicians (Bishop-Fitzpatrick et al., 2017;...

"... Helverschou & Martinsen, 2011; Postorino et al., 2017). The types of events or stimuli that can give rise to anxiety may also be different, or more varied, in autistic individuals than in the general population (e.g. Kerns et al., 2020)."
Kildahl et al 2021, p2163."

So where am I going with this?

Well who receives an identification of a diagnostic category is subjective. People often have multiple co-occurring diagnostic categories, which often alters how the diagnostic categories present...

So for many persons, will have so many diagnostic categories attributed to them, their medical records basically contain the alphabet (hyperbole).

Take me.
Diagnostic categories which can be seen in my medical records.
Asperger's Syndrome-despite speech delay.
ADHD combined type.
OCD-needs assessing properly
Newson's PDA-Do not want PDA diagnosis
Anxiety
Depression
Dyspraxia needs assessing properly
Obsessive Personality

There are a couple of sensory diagnoses in there.

Speech delay on Asperger's Syndrome is important as differential marker between Asperger's Syndrome & Autistic Disorder is speech delay, so I should have been diagnosed with Autistic Disorder instead of Aspergers Syndrome...

Even in my medical records they is at least one diagnosis which is technically mistaken; i.e., I was diagnosed with wrong DSM-4 autism subtype.

... Why am I saying listing the below diagnostic categories?

Simply put, if those diagnostic categories were actually any good at describing me & explaining me as a PERSON, then TEN different diagnostic categories would NOT be applicable to me.

I.e., if those diagnoses were any good at describing me/ explaining me as a person. Then a person should not a few-several or more diagnostic categories to do so.

How can any one of those diagnostic categories, by themself give me, or anyone sufficient information to describe me, or to understand me?

They cannot, as those 10 diagnostic categories have blurred boundaries & are unpredictably interacting, affecting features I present...

Where OCD starts vs autism starts?
Where does PDA vs ADHD start?
Where does Autism vs Obsessive Personality start?
Where does anxiety vs depression start?
Where does sensory issues diagnosis start vs autism start?
Etc etc.

My own cognitive processes are NOT neatly packaged & belonging to anyone diagnostic category.

In order to understand me, one needs to take a holistic & comprehensive picture of my spiky profile. Those diagnostic categories in isolation, simply do NOT do that.

Relying on diagnostic categories to underpin how one describes me & tries to explain my actions leads to flawed understandings. E.g., my ADHD related features must present in social situations, so my autism diagnostic report contains plenty of indicators I meet ADHD criteria.

This takes me back to my point about my co-occurring diagnostic categories often are unpredictably interacting, affecting how my spiky profile features presents in each of those 10 diagnostic categories.

That is a problem, if one has a stereotypical view of those diagnostic categories, one could easily interpret it I do not meet criteria/ threshold for some of those diagnostic categories. Or misinterpret my behaviours, or make mistaken assumptions, when attempting to explain me.

This is important, as diagnostic categories, like ASD/ ADHD/ PDA/ OCD etc, are abstract representations of characteristics people describe. My cognitive profile is independent of which diagnostic categories are attributed towards me.

These issues are applicable to other human beings. In that the explanatory power of diagnostic categories, are in my view very limited, to the point I would argue generally diagnostic categories fail to adequately describe what they purport to & to explain a person's actions.

Summarising.
Diagnostic categories, seem to be:
1) Poor at predicting which strategies-"treatments" a person should receive.
2) Too subjective-arbitrary to adequately describe a person's spikey profile, to be any use of a person.

I.e., I increasingly doubt diagnostic categories do, what they are meant to do, to be useful:
1) Adequately describe a person enough to better explain a person than other diagnostic categories.
2) Inform strategies-"treatments" a person should receive.
They seem not to do this.

I have other concerns about diagnostic categories, which is making me adopt a cross-categorical/ transdiagnostic approach.
Such as.
Why should mine (or anyone else's) story be defined by various diagnoses, like autism/ ADHD/ ODD/ BPD etc?

Why should anyone base their identity on something as terribly flawed as psychiatric diagnostic constructs?

Why should anyone base their identity on something which others essentially control how it is defined?

@siantutors Does this thread explain to you why I think diagnostic categories, like autism/ PDA/ ADHD etc, can be called described as "Schroedinger's diagnosis"?

@siantutors @threadreaderapp Please can you unroll?

Thank you in advance.

I going to add some more points on why I think diagnostic categories are bad are describing features a person has & thus are very limited-poor at explaining a person's actions.

I discuss here why I think formulation process is often biased by use of diagnostic categories, in particular using "PDA Profile of ASD" as an example.
threadreaderapp.com/thread/1574526…

I think @peterkinderman does a good job explaining problems created using diagnostic categories as part of the formulation process.

@peterkinderman I say previously said, my cognitive profile is independent of diagnostic categories attributed to me.

I should say diagnostic categories attributed to me are partly dependent upon my spiky features profile & partly dependent on assessor's-clinician's bias.

@peterkinderman "themes were identified as (parental) perceived barriers to diagnosis, namely compensatory behaviours, parental concerns, others’ perceptions, lack of information/resources and clinician bias."
Lockwood Estrin et al 2021, p454
Quote is about bias for identifying autistic females.

The point I wish to make about spiky features profiles, is that spiky profiles NOT fixed, they are transient, changing as a person ages & in different situations.
Diagnostic categories are attempting to map features which are NOT static.

So what this means is that using diagnostic categories to attempt to describe a person's spiky features profile, is an subjective process, trying to map something which is also NOT fixed in place.

This further undermines the supposed utility of diagnostic categories.

I need to give some examples to establish that spiky features profiles are NOT static.

An example from PDA literature, is an image from Christie et al (2012). Lest hand dial is person's tolerance levels, Right hand dial is demand others places upon the person. Person's tolerance to other's demands is limited to their anxiety levels.

Reason why dials are used is that a person's tolerance levels change, as a person's anxiety levels fluctuate over time & different situations. Hence, the demands, which are appropriate to place on the person changes over time & different situations.

"It should also be noted that speaking and non-speaking is not dichotomous because autistic people can move between speaking in some environments or spaces and not in others, and this is a dynamic and not static group (Peña 2019)."
Botha et al 2021, p1.

Above quote is an example of how situations in which autistic persons can become non-speaking is highly variable & often a dynamic characteristic.

Point I am making here is that often a person's spiky features profile changes based on situation.

Also importantly, that spiky profiles often change over time, such as childhood to adulthood and vice versa.

"Wider literature suggests between 44% and 89% of participants do not meet the caseness for DAP into adulthood (Woods, 2019b), and this is significantly higher than found in autism (Iemmi, Knapp, & Ragan,
2017), indicating DAP is not a form of autism."
Woods, 2020, p68.

Previous quote is discussing how CYP with PDA often do not meet diagnostic threshold for PDA as they mature towards adulthood, & that rate for PDA is higher than observed in autistic CYP not meeting threshold for autism in adulthood.

We know there is a similar phenomenon occurring with ADHD, it is literally written into DSM-5 ADHD criteria...

"Inattention: Six (or more) of the following symptoms have persisted for at least 6 months to a degree that is inconsistent with developmental level and that negatively impacts directly on social and academic/occupational activities:...

"... For older adolescents and adults (age 17 and older), at least five symptoms are required."
APA, p59.

I.e., adults need 5 out of 9 options, instead of 6 out of 9 options to meet threshold for DSM-5 ADHD.

Same thing is also stated for Hyperactivity and impulsivity on p60.

Before I forgot it is worth mentioning that spiky features profiles changing based on situations is written into DSM-5 autism criteria.

"Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life)."
APA 2013, 50.

Above quote is description of Category C in DSM-5 autism criteria, on DSM-5 p50.

Back to how spiky features profiles change over lifespan, using autism & PDA as an example.

"We, in our many years of clinical diagnostic work, have observed how extremely difficult, even impossible, it is to define boundaries of different sub-groups among children and adults with autism spectrum conditions..."

"... (that is those who have an absence or impairment of the social instinct). While there is a very great difference in the clinical picture of one child with classic Kanner syndrome and learning disability compared..."

"... with another with very high ability in their area of special interest who fits the criteria for Asperger’s syndrome, there are large numbers of individuals who have a mixture of features of both conditions...."

"...Furthermore, changes occur over the years and a child who was appropriately diagnosed with Kanner’s autism can grow into an adolescent who fits Asperger’s descriptions. Other sub-groups have been suggested in addition to those in the DSM-IV (and ICD-10)..."

"... The same problem of defining the boundaries exists for all of these. Likewise there is difficulty in defining the boundaries between autism and the enormous range of ‘‘typical’’ development especially in individuals who have very high skills in specific areas."

Above quote is from Wing et al 2011, p711.

"A key question our workgroup has examined is whether there are meaningful differences between Asperger disorder and high-functioning autism. There has been no shortage of studies on this topic and some helpful recent reviews.4..."

"...Overall, it does not appear that those individuals on the autism spectrum who meet expected language milestones in the first 3 years (i.e., meet Asperger criteria) differ significantly from those who are delayed in early language,..."

"...if one compares groups of equivalent current developmental level or IQ. Some studies have shown that the outcome of these two groups is very similar in adolescence and adulthood.5..."

"...There is no evidence of differential treatment response or etiology to date, and claims for a distinct neurocognitive profile in Asperger disorder have received mixed results."
Happé 2011, p540.

"This is described as non-specific pervasive developmental disorder. However, sometimes this child will more clearly belong to a typical cluster as time goes on and particular symptoms take on greater prominence."
Newson et al 2003, p598.

It is worth stating that Newson essentially said the thing previously in Newson (1999), i.e., the document where she produced this bridging diagram of their Pervasive Developmental Disorders diagnostic grouping.

"Some PDA children show a real overlap with autism, especially over time: that is, they may start with one typical picture and gradually to conform closely with other, & one or are both atypically autistic & atypically PDA, showing a pattern of symptoms midway between the two."

Above quote is from Newson 1989, p25.

The quote is taken from the below image.

It is worth noting Newson had a stereotypical view of autism in 1980s, in how most of us had dysphasia, which is Asphasia today.

Point I am making is Newson was consistent people could transition into & out of PDA.

Point I am making is, in addition to subjective nature of diagnostic categories, they are attempting to map things which are often transient & often in flux. Diagnostic categories intrinsically have very limited usefulness in describing behaviours & explaining a person.

I should not need to point out that using diagnostic categories biases the formulation process, such as perceiving people to have deficits when they do not & often using flawed constructs like theory of mind deficits.

For example this article explains well the evidence failings with Theory of Mind.
psycnet.apa.org/fulltext/2019-…

I would go further to note, that using diagnostic categories use flawed assumptions to underpinning the diagnostic category & thus formulation process.