Autism Spectrum Disorder May Be Highly Prevalent in People with Functional Neurological Disorders 2022 González-Herrero, Edwards et al

Abstract

Recent observations suggest that autism spectrum disorder (ASD) co-occurs in people with a functional neurological disorder (FND), but little systematic data are available on the relationship between FND and autism.

The study aimed to assess the self-reported autistic traits via a standardized questionnaire and the prevalence of previously diagnosed ASD among people with FND and their 1st-degree relatives.

We performed a survey of members of the patient organization FNDHope, using a self-completed questionnaire for screening for autistic traits and ASD: the adult autism subthreshold spectrum (AdAS spectrum). There were 344 respondents diagnosed with FND with a mean age of 39.8 ± 11.6 years (female sex 90%). Eight per cent of respondents volunteered a previous diagnosis of ASD, and 24% reported a 1st-degree relative with a formal diagnosis of ASD, mostly their children.

We found that 69% of respondents had scores in the AdAS spectrum indicating a clinically significant ASD and 21% indicating autistic traits. Further studies are needed to provide more evidence regarding the prevalence of ASD in people with FND and how this may influence the aetiology, treatment selection and prognosis.

Open access, https://www.mdpi.com/2077-0383/12/1/299

 

"The aetiology of FND is not fully understood. Data suggest various risks, precipitant, and perpetuating factors. Previous stressful life events, including childhood or adult-life abuse, certain personality traits, anxiety and depressive disorders are significantly more common in patients with FND, compared to healthy and patient controls [8,9]. However, such predisposing factors are also absent in many people with FND.

Frequently, people with FND also present with functional somatic syndromes (FSSs), such as irritable bowel syndrome (IBS), fibromyalgia/widespread chronic pain (FM/CWP) or chronic fatigue syndrome (CFS) [10]. Despite these being listed as separate conditions in DSM-5, growing voices advocate for overlapping the clinical and aetiological characteristics between FSSs themselves but also with FND"

 

As an aspie myself this is apalling and discrimantry. Are they going to diagnose evey disease as fnd if we have autism

 

An a1tenative explanation - autistic peop1e get poor hea1thcare because of their communication and sensory difficu1ties. Name1y, they suffer more projection by c1inicians than non autistic peop1e.

Edit - this explanation may a1so app1y to peop1e with poor1y understood chronic diseases such as ME/CFS, IBS etc.

 

If a diagnostic construct is associated with lots of other things maybe that construct lacks specificity.

 

Either there are serious deficiencies in the methodology or the patient cohort is very unusual. Although the historic gender difference in ASD diagnosis has been challenged - heavily male - there's a degree of consensus that there is a gender differential of 3:1 M:F the above study is suggesting that at least 59% of its (identifying as) female participants meet an ASD diagnosis. The authors don't seem to have addressed this, just gone straight to a 'lumper' solution based on the DSM as the source of all authority.

Instinctively I'm drawn to dismiss this study as 'wrong' but the overlap of conditions with neurological elements has to be considered to be of at least potential relevance, I think it's something that we have to be prepared for in the results of DecodeME - I've placed a small mental bet on at least a minor peak in an area in common with schizophrenia .

Gender differences in autism spectrum disorders: Divergence among specific core symptoms Sci hub: https://sci-hub.se/10.1002/aur.1715

 

Because it makes their (the clinicians') lives easier? They can get rid of patients they don't like?

 

Studies like this tell them what they want to hear: All those frequent flyer patients you disdain are just nuts! And not only are they nuts, they all have the same problem. Good news, that problem isn’t yours to solve.

 

Mighty hypocritical of the FND lot to do a survey from a patient organization, one that is actually more of a lobby group, even as they aggressively fight the same method when it doesn't validate their beliefs in many independent and much larger surveys.

The double standards in psychosomatics are absurd. All because the rest of medicine stands by not caring about the invalidity of double standards and circular reasoning. It's not even these people doing harm, it's the apathy and complicity of the bystanders watching and doing nothing about blatant violations of their so-called principles.

In a real sense, because of the autism claims, this is going back to the refrigerator mothers nonsense. What a mess. Very harmful to patients, all in the name of the ideology. The exact same ideology. Again. Like a freaking zombie.

I think we should start talking about narrative-based pseudomedicine. In the end that's what's happening, real life, facts, science, they're replaced by narratives. And not the patients' narratives either, no, it's narratives made up by physicians of their perception of the subjective lived experience of their patients, about the subjective lived experience of their patients. They are claiming, asserting, to better understand the subjective experience of their patients, an actual real life "I know you better than you know yourself". Absolute nonsense.

I never see patients presenting a narrative. It's always facts, events, symptoms. It's factual, there is no need for narrative nonsense. But this is the future of medicine: everything is a story, facts are irrelevant, science is not allowed.

 

Because they're happy to continue getting away with treating these patients as if they're malingerers and hypochondriacs, they don't want to be told they were wrong all these years/decades.

How would they react to "Sorry Mr. GP but you've been acting unethically all these years, causing deterioration in your patient's health through neglect and mismanagement."?

 

In regards to ME, I’ve come across too many cases where clinicians who have spoken out about such things have had their careers ruined.

I do think if doctors had better options to provide patients, many would opt for it.

The tone of how to treat patients has been set. “ME was once considered neurological but based on growing evidence, we now believe it to be functional.”

Not many will put their neck on the line to go against the direction their employer wants them to take.

 

FND Hope , the organisation that co-operated in this study is patient led: FND Hope Board Members with Chair, Co-Chair and UK CEO all patients who are seemingly accepting of the FND label - for my own perspective I'm somewhat uncomfortable denying the validity of their perspective.

The González-Herrero paper includes Mark Edwards who is the FND Hope Medical Adviser ,Edwards and all his co-authors appear to be 'real clinicians' as in practicising neurologists: Dr. Javier Pagonabarraga Mora , Francesca Morgante , Biba Stanton . I don't think that challenging FND as a medical entity is going to be comparable to taking on the BPS philosophy and IMO it is a tactical error to dismiss the professional standing of the clinicians who support the FND model - they may of course be wrong about FND but it's going to take a far more comprehensive academic rebuttal to change the thrust of FND than it was to blunt that of BPS in relation to ME/CFS.

The González-Herrero paper makes no proposition that FND is not organic and by making a direct link with ASD which the paper clearly categorises as Neurodevelopmental the authors have made it implicit that FND must itself, at least in some individuals, be a consequence of Neurodevelopmental processes - they are not talking 'refrigerator mothers'.

 

To extend the conflict analogy I suppose my concern is that it's a poor strategy to approach each battle in the same terms where in reality each needs its own particular identification of objectives and disposition of resources.

In simple terms the FND issue seems to be little more than a lumper versus splitter argument - unlike the BPS issue there's no over-riding philosophy or cross discipline/context appeal, the FND question is whether a, b and c are essentially the same or have characteristics so at variance they demand separate nosological identities. One can attribute various motivations to the two sides of of the lumper/splitter debate but that only serves to obscure the validity or otherwise of each side of the argument.

González-Herrero et al ref: a 1999 'lumper' paper by Wessely and Sharpe (and Nimuan) Functional somatic syndromes: one or many?* from which we could conclude that the whole 'lumper' project is fatally flawed because of Wessely and Sharpe's multiple failings - but that doesn't address the actual 'lumper' arguments, only that the researcher motivation is suspect, for which the evidence divorced from the BPS issue, is absent or poor. Are González-Herrero et al really part of the Wessely, Sharpe etc cabal or are they arriving at a 'lumper' paradigm from a wholly different perspective ?

González-Herrero et al also ref: A unifying theory for cognitive abnormalities in functional neurological disorders, fibromyalgia and chronic fatigue syndrome: systematic review which is discussed here: https://www.s4me.info/threads/a-uni...cal-disorders-2018-mark-j-edwards-et-al.3992/ where the comments are universally negative but to me that paper reads substantially differently to the Wessely & White paper, and the 'lumper' arguments made have greater strength and require a more substantive 'splitter' response.

Also reffed: by González-Herrero is a dreadful paper by Fink and friends, https://www.s4me.info/threads/irrit...verlapping-2020-fink-et-al.13859/#post-240428 and paper by Yunus on Fibromyalgia and Overlapping Disorders:The Unifying Concept of Central Sensitivity Syndromes** and a survey of FND patients discussed here: https://www.s4me.info/threads/inter...er-2021-butler-stone-et-al.21417/#post-455538 So on balance González-Herrero et al have not exactly covered themselves in glory in the quality of the references they are relying on for: "growing voices advocate for overlapping the clinical and aetiological characteristics between FSSs themselves but also with FND".

However weak references on their own are unlikely to offer a fatal blow to the FND focused 'lumper' argument, especially as it seems to have some patient support, keeping ME/CFS out of future 'lumper' perspectives is going to need some well articulated positive arguments, that is positive for why ME/CFS belongs outside the 'lump', not negatives about the 'lumpers' or the 'lumper perspective'.

*Sci Hub full article: https://sci-hub.se/10.1016/s0140-6736(98)08320-2
**Sci Hub full article: https://sci-hub.se/10.1016/j.semarthrit.2006.12.009

 

Isn't one of major flaws in the fnd arguement that lumping many conditions under one roof with just one treatment option pyshc and physio.
Plus there is non exsistance of pathophysiological only a presumption that that the body is coverting thoughts and emotions into physical synptoms

 

I’ll try making a thread but from what I currently understand, FND lead researchers claim existing and poorly understood areas of brain injury that lead to persistent symptoms, e.g. faults with neural pathways, are not always physical problems caused by the original damage but instead result from phycological problems causing onset/persistence of symptoms (software not hardware). The mechanism is unclear, but then a lot of mechanisms for brain/head injury are unclear, so that wouldn’t matter per se in terms of accepting the condition.

They make the exact same claims about other CNS conditions that can cause persistent symptoms in a subset of patients.

 

There's a fairly complete FND manifesto by Mark Edwards here: https://fndhope.org/fnd-guide/diagnosis/

"After an open minded discussion of these issues, many people with FND do not have significant psychological issues that seem relevant either in triggering symptoms or as part of ongoing problems accompanying the functional neurological symptoms. This does not mean that cognitive types of treatment, if done in the right way, are irrelevant. However, generic psychological therapy for depression in a person with FND who does not experience depression is not likely to be much help: this is why ideally treatment in FND needs to be tailored to the individual person."