Research Roundup is a monthly newsletter from N of One’s UK-based science writer, Paul Whiteley, PhD. Each month we summarize a few research papers on a variety of topics in one simple, easy-to-read paragraph. It’s our hope that by skimming these each month, you will broaden your knowledge topics currently being explored by researchers and perhaps find information helpful in your journey of navigating a complex autism landscape.
Dietary changes and supplementation for autism: lots of green shoots but more to do
Analyzing data from 26 studies published since 2018 covering the use of various dietary and nutritional supplements in the context of autism spectrum disorder (ASD) revealed a pattern of ‘green shoots’ in terms of effectiveness according to a new paper. But the positives coming out from such data, cumulatively including over 1400 participants, have to be weighed up against the diverse number of diets and supplements investigated and the need for a lot more high quality science looking at both their individual and combined effects. Data on dietary interventions - including the gluten- and casein-free diet and ketogenic diet - and nutritional supplements - including vitamins, minerals and probiotics - were all analyzed. The authors concluded that, allowing for the need for better controlled trials, various combinations of dietary changes and supplements seemed to show an association with positive changes to both core and peripheral signs and symptoms of autism. Interestingly, compounds such as carnitine and folinic acid were particularly singled out for positive mention on the basis of their existing science. Further studies are required on best responders to the various supplements highlighted and the biological mechanisms of effect. And if probiotics - products designed to affect the gut bacterial populations that call us home - are your particular interest, other independent data also confirms some green shoots...
[note from J. Rodakis: Yes, more high-quality research needed in this area, however, reports from parents on the potential benefits seen from various diets and supplements have been accumulating for decades. I once heard it said: “Every child with autism deserves a trial of a dairy-free and/or gluten-free diet.” Could not agree more.]
Note: there is a free iPhone app from ANRC (Jim Adams/ASU) that allows you to explore results from parent-reported surveys of various nutraceuticals.
“... many autistic people who do not talk can learn how to spell”
New research from the University of Virginia, USA builds further on the notion that ‘non-speaking' is not necessarily a good measure for cognitive or intellectual competence in relation to autism. Indeed, underestimating ability on the basis of the no or limited use of language may be a pitfall to be avoided. Researchers devised a tablet-based word game delivered to 31 teenagers and adults who had limited or no phrase speech. They measured response and pause times as specific letters were flashed up on the screen that either spelled out sentences or were nonsense. Looking also at pause times at the beginning of new words being spelled out, they concluded that competency in literacy and spelling ability may not necessarily be inferred from verbal abilities alone. There is a lot more work to do in this area to further enable a seemingly very disabled section of the autism spectrum, while also learning from historical issues on the issue of authenticity or authorship of non- or minimal autistic speakers.
[Note from J. Rodakis: I know several, very thoughtful families whose lives have been completely transformed through the use of spelling-based communication methods. If you have a non-speaking family member with autism, I'd urge you to looking into spelling-based communications such as Spell to Communicate https://i-asc.org ]
Discussing mast cells and autism
Mast cells, a form of white blood cell that typically contain important immune signaling compounds such as cytokines and histamine, seem to have an important relationship with some autism, according to a recent collaborative review paper. Although not the first time mast cells have been discussed in the context of ASD, this recent publication provides a comprehensive overview of the current science in this area, including the many and varied ways that mast cells might be released and their connection to an increasingly important issue for at least some autism: neuroinflammation. Set within the context of a readily recognized relationship between immune functions and autism, the review also provides some potential outlets for further study investigating how mast cell activation might be controlled and onward what effects that might have on the presentation of (some) autism.
Full-text: https://www.mdpi.com/1422-0067/25/5/2651
Post-traumatic stress disorder and autism: it happens more frequently than you might think
Post-Traumatic Stress Disorder (PTSD) for many people would be something associated with traumatic events such as witnessing the horrors of war or some catastrophic natural disaster. It’s now recognized that a multitude of life-events can also initiate PTSD and a diagnosis of autism does not seem to offer any protection from receipt of a PTSD diagnosis. In fact, PTSD might actually be more common in autism. Building on a previous review of the research looking at PTSD and autism, an updated systematic review provides a worrying snapshot on how prevalent PTSD is accompanying autism and how “autistic adults and children experience more severe PTSD symptoms compared to their non-autistic peers.” Further work is needed on whether the features of autism or other comorbidity might uniquely predispose to PTSD symptoms (and more severely so than non-autistic people) and what measures could be put in place to mitigate or treat such symptoms from either currently available services or the requirement for more autism specific provisions.
The potential dangers of self-diagnosis in psychiatry
The issue of self-diagnosis is discussed in a recent article out of the Institute of Psychiatry in London, UK. Drawing heavily on the specific issue of self-diagnosing autism, authors examine and discuss the multitude of factors that seem to show involvement with this issue including the rise of the neurodiversity movement and accompanying identity politics. Their reflections quite comprehensively detail the many push-and-pull factors that might lead to self-diagnosis, importantly including the difficulties accessing diagnostic services, a role for social media and the issue of belonging - “admittance to the peer support of a community.” There are no easy answers to the issue of self-diagnosis. Such labeling can, for many, be an important step towards seeking formal assessment for autism and onward professional confirmation (or otherwise) of a diagnosis. The pitfalls however, including misdiagnosis - also potentially missing more than one other condition - and indeed misdiagnosis of a typically treatable condition, are also highlighted. Such discussion is particularly relevant to the newest iteration of the ICD diagnostic classification of autism (ICD-11) which lists 18 boundary conditions that can manifest autistic-like traits. If in any doubt, seek professional guidance. And… the topic of self-diagnosis seems to be attracting quite a bit of recent research attention lately.
And finally…
Important topics covered in a journal special edition
While it seems to be targeted more toward pediatricians and medical professionals, the special edition journal titled Pediatric Management of Autism contains multiple papers covering some of the main ‘here and now’ topics of autism research and practice were recently published in the Elsevier science journal ‘Pediatric Clinics of North America’. Topics include issues such as profound or high-support needs autism, to the loss of autism diagnosis (LAD) and lots in-between, readers are directed to the journal special edition for some important discussions on here and now topics in autism research.
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