Studentship in process: A Mixed Method Exploration of the Association between Autism and Central Sensitivity Syndromes, Sarah Grant, KCL

Andy

Andy

Retired committee member
Abstract

It is widely held in the autistic community, and amongst professionals in the field, that 'Central Sensitivity Syndromes' (CSS) such as Fibromyalgia Syndrome (FMS) and Chronic Fatigue Syndrome (CFS) seem to be more prevalent in people with Autism Spectrum Disorders (ASD). To date, this link has not been formally investigated.

This PhD project has several research goals; firstly, to establish whether there is an association between these illnesses and ASD; secondly, to explore whether any association is mediated by gender effects; thirdly, to look at common diagnostic experiences of people with CSS, and investigate how autism might affect the diagnostic journey; and finally, to explore how autistic traits might affect illness beliefs and management for those people with symptoms of both conditions.

The project takes a mixed method approach, with a quantitative study using structural equation modelling to explore the links between conditions, and a qualitative study of participants with symptoms of both ASD and CSS. Collaborators include Professor Simon Baron-Cohen (Cambridge Autism Research Centre) and Dr. Sander Begeer (Netherlands Autism Register).
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https://gtr.ukri.org/projects?ref=studentship-2104238
 
It is widely held in the autistic community, and amongst professionals in the field, that 'Central Sensitivity Syndromes' (CSS) such as Fibromyalgia Syndrome (FMS) and Chronic Fatigue Syndrome (CFS) seem to be more prevalent in people with Autism Spectrum Disorders (ASD).
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Somehow I highly doubt that, considering CSS is still just a hypothesis existing only in an ideological echo chamber with no more evidence for it than astrology. It may hold true, it is nonetheless no more credible yet.

Putting words in other people's mouths is dishonorable. And I really expect better than "some people are saying". If that were a credible basis to pay attention we wouldn't even be in the mess we are, since we aren't just saying, we also write it down consistently and make it officially known that our status quo is disastrous. When something is your personal opinion at least be honest and say it clearly and distinctly, no need to create strawmen.
 
rvallee said:
Putting words in other people's mouths is dishonorable. And I really expect better than "some people are saying".
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I am not sure that this is anything more than making an observation. I would not be surprised if a significant number of people who regard themselves as having autism spectrum disorder 'hold' that fibromyalgia and CFS are more prevalent in people with that diagnosis. I suspect if one were to go on to the equivalent forum for people with ASD it might often be mentioned.

If this is the case it makes sense to try to establish whether there is in fact an association. The student is not saying that this is her opinion and rightly so, until she has some evidence. The use of scare quotes suggests that she is not even committed to a belief that CSS is an appropriate category here - she is just reporting that people are of this opinion.

My concern would be whether the project involves valid methods for determining associations. It is all very well using modelling and equations but if you start with cohorts that are biased by referral patterns or preconceived ideas (which are central to the study so relevant) then you are likely just to end up reinforcing preconceived ideas. A study like this really needs to be population based - like one of those birth year cohort studies where absolutely everyone is screened and in a way that asks no leading questions.
 
to explore how autistic traits might affect illness beliefs and management for those people with symptoms of both conditions.
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YUCK.

So they're implying that me/CFS and FM both involve "illness beliefs" AND they're implying that autistic people are more likely to have faulty beliefs about their health.

So they're managing to shit on both ME/cfs patients and autistic people with this one.
 
I have a vague memory that the student doing this has autism and CFS? This could be wrong and I've no idea where I saw that, but thought I'd mention it anyway.
 
Recently, I came across the idea of autism fatigue on the autism websites. It makes complete sense as the idea is that dealing with overwhelming input and struggling to deal with the neurotypical world takes so much effort it leads to exhaustion.

This is not a controversial idea. The same thing happens with many disabilities; my friend with cerebral palsy did would have to go to bed after doing things simply because of the effort it took to make her limbs work.

I suspect that being fatigued for any reason is being called CFS as we already know that it is being listed as a symptom rather than the accurate chronic fatigue. When CFS is mentioned we should always demand to know if PEM with inflammatory symptoms and delay has been looked for. If they just mean fatigue they must make that clear.

For myself, I was relieved as I have been worried that my autistic grandson had ME. I didn't think he had the inflammatory PEM we have but it is hard to find out due to his disabilities.
 
I thought ME/CFS and FM were more prevalent in female patients, and ASD was more prevalent (or at least with better rates of diagnosis) in male patients? Isn't this an unusual place to be searching for associations?

I do find it interesting in that I see people saying they have ME, CFS, or FM a lot more than I used to, and I'm talking about people just generally in culture. Like, a blogger I follow for gardening tips will mention having one of the conditions, or some singer will pop up in the news with one. Of course there will be a degree of confirmation bias in there (I have ME, so I pay more attention to other people saying they do too), and we all know about problems with over- or misdiagnosis, but it all comes together to give me the impression that ME and FM are surprisingly common. People with either condition are going to show up in all sorts of other patient cohorts without there necessarily being any association between conditions.
 
Mithriel said:
Recently, I came across the idea of autism fatigue on the autism websites. It makes complete sense as the idea is that dealing with overwhelming input and struggling to deal with the neurotypical world takes so much effort it leads to exhaustion.

This is not a controversial idea. The same thing happens with many disabilities; my friend with cerebral palsy did would have to go to bed after doing things simply because of the effort it took to make her limbs work.

I suspect that being fatigued for any reason is being called CFS as we already know that it is being listed as a symptom rather than the accurate chronic fatigue. When CFS is mentioned we should always demand to know if PEM with inflammatory symptoms and delay has been looked for. If they just mean fatigue they must make that clear.

For myself, I was relieved as I have been worried that my autistic grandson had ME. I didn't think he had the inflammatory PEM we have but it is hard to find out due to his disabilities.
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I'm autistic and I have ME (like, I definitely have ME, I'm diagnosed and I meet the ICC criteria).

My ME started off mild, and for a long time I thought it was just "autism fatigue" (also known as autistic burnout), as I'd heard people talking about that in the autistic community. Even when my ME became moderate, I still thought it was autism fatigue, until I found out that many of the things that I was experiencing (eg increased light sensitivity) were ME symptoms.

If I hadn't written it off as "autism fatigue" for so long, I would have known that pushing myself in terms of exertion was dangerous. I probably would not be severe now.

I believe that if there was better public knowledge about the varied symptoms of ME then I would have realised a lot sooner. The NHS page on CFS/ME is very limited in its description of the symptoms (I dont even have several of the Oxford symptoms like recurrent sore throat and swolllen lymph nodes). Meanwhile I was telling my GP that I was tired all the time, that I was struggling with blood sugar drops between meals, and that I was needing to wee very frequently. (Yes, she tested me for diabetes.) I didn't even mention my ever-increasing light sensitivity, because I assumed that was due to my autism. I was also noticing that at church I needed to sit down for the singing instead of standing up because I felt anxious standing up (of course I now know that this was orthostatic tachycardia).

I do believe that if I'd seen a copy of, for example, the ICC criteria for ME back then, I would have seriously considered ME as a possibility as it would have told me that all those things were symptoms. (Although the first point of the criteria might have turned me off since it insists on a 50% reduction in pre-illness functioning, which I think is unhelpfully exclusive, but that's off-topic...)

The GP never suggested ME/cfs either. After doing various blood tests which all came back normal she said I was probably tired due to my anxiety disorder. (Yes, I did genuinely have an anxiety disorder.) I found this plausible to start with - and for sure, my anxiety disorder was using up a large part of my available energy. But as the tiredness and continued to get worse I became more and more suspicious that there was something physical going on.
 
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Sarah94 said:
I'm autistic and I have ME (like, I definitely have ME, I'm diagnosed and I meet the ICC criteria).
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I also am autistic and have M.E. However, I was diagnosed with M.E. a couple of decades earlier than when I received my NHS autism diagnosis. I usually say that my M.E. began after a severe upper respiratory disease which I had at age 25, when breast-feeding my second baby (I also had a 2 year old toddler) because I became bedridden at the time. However, my (late) mum insisted my M.E. started after my glandular fever when I was 17. I was definitely more fatigued compared to young people my own age in those years, but when I look back I can't know if it was 'autistic fatigue' or mild M.E. I did insist on having a more in-depth clinical autism assessment than would normally be given, because of the complexity of having existing M.E. (but that was just luck that the local NHS service had an exceptional Clinical Psychologist and that I had pre-existing Eduactional Psychologist assessments for dyslexia and dyspraxia that informed the process). I've since had an in-depth NHS ADHD assessment and diagnosis (there is a known association between autism and ADHD).

I only know of a few other autistic people with M.E., but the majority of my autistic friends recognise their 'autistic fatigue' as part of their autism. I would say the difference is that they can predictably 'recharge their batteries' and 'budget their energy' with careful planning of activities, whereas my battery is completely broken and my M.E. symptoms unpredicatible. There does not seem to be any delayed PEM in autistic fatigue from what I see in my autistic peers, or any of the general immulogical symptoms we experience. However, many of them do have quite extreme sensory issues including light, sound and touch sensitivities, headaches and migraines.
 
Sarah94 and Simbindi it must be awful to have ME as well as autism. I wish ME was distinguished from chronic fatigue, things would be so much easier When we were 21 my husband took bad flu but was forced back to work after a few days. He developed a post viral chronic fatigue which would nowadays be called ME/CFS but then we never gave a thought to it being ME since it was so different from my ME, fatigue being part of ME only the way it is part of MS.

Diagnostic tests are what will make the difference as it is so difficult to tease apart different symptoms.

We take our grandson round Tescos late at night when it is quiet but last Christmas they suddenly began playing music very loudly. He curled up into a ball while I had a seizure like episode and my handbag went flying :)

Still we got out of the house ...
 
The first and second parts of her PhD seem very problematic given the issues with defining appropriate criteria for these 'CSS' disorders, the fact many autistic people only receive their diagnosis in adulthood (so many remain undiagnosed) and the issue of underdiagnosing females with autism.

See for example:

https://www.cbc.ca/radio/quirks/oct...gnosed-because-it-s-a-male-disorder-1.4850334

The third and fourth parts may be more meaningful (if 'illness beliefs' was replaced with 'illness experience').

Given all the limitations, I feel the following is probably the best approach to gaining meaningful and useful insights into the health problems of autistic people, including those with M.E.:

https://www.autistica.org.uk/our-re...ic-adults-across-their-lives-and-into-old-age
 
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Mithriel said:
Sarah94 and Simbindi it must be awful to have ME as well as autism
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The hardest thing is that as a child/young person/young adult I used physical activity to cope with my autism problems. I used to love going out cycling (thought nothing of doing a 50 mile ride over the Blackdown Hills in Somerset, where I lived). I also loved hiking and camping. This is what I really miss, though I am lucky enough to still live rurally, with views of fields from my bedroom window and stunning views of the Quantocks to the back of my house.
 
Simbindi said:
I also am autistic and have M.E. However, I was diagnosed with M.E. a couple of decades earlier than when I received my NHS autism diagnosis. I usually say that my M.E. began after a severe upper respiratory disease which I had at age 25, when breast-feeding my second baby (I also had a 2 year old toddler) because I became bedridden at the time. However, my (late) mum insisted my M.E. started after my glandular fever when I was 17. I was definitely more fatigued compared to young people my own age in those years, but when I look back I can't know if it was 'autistic fatigue' or mild M.E. I did insist on having a more in-depth clinical autism assessment than would normally be given, because of the complexity of having existing M.E. (but that was just luck that the local NHS service had an exceptional Clinical Psychologist and that I had pre-existing Eduactional Psychologist assessments for dyslexia and dyspraxia that informed the process). I've since had an in-depth NHS ADHD assessment and diagnosis (there is a known association between autism and ADHD).

I only know of a few other autistic people with M.E., but the majority of my autistic friends recognise their 'autistic fatigue' as part of their autism. I would say the difference is that they can predictably 'recharge their batteries' and 'budget their energy' with careful planning of activities, whereas my battery is completely broken and my M.E. symptoms unpredicatible. There does not seem to be any delayed PEM in autistic fatigue from what I see in my autistic peers, or any of the general immulogical symptoms we experience. However, many of them do have quite extreme sensory issues including light, sound and touch sensitivities, headaches and migraines.
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So, N=2 so far but nonetheless aligns with how this usually goes but it seems that the "link" between autism and CFS alleged in the abstract is nothing more than confusing ME/CFS/WHATEVER with chronic fatigue, the symptom.

Which was always the biggest problem with taking one of the most common symptoms in medicine and inventing a fictitious diagnosis around it.
 
Sarah94 said:
The NHS page on CFS/ME is very limited in its description of the symptoms (I dont even have several of the Oxford symptoms like recurrent sore throat and swolllen lymph nodes).
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Ive never seen recurrent sore throats and swollen lymph nodes referred to as “Oxford symptoms* before. Not sure what the point is?

ETA. In the ICC these symptoms are referred to in C1 which covers flu like symptoms.........
 
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