tag:blogger.com,1999:blog-55485602059148333242024-03-12T23:24:20.099+00:00Questioning AnswersNews and views on autism research and other musings. Sometimes uncomfortable but rooted in peer-reviewed scientific research.Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.comBlogger2234125tag:blogger.com,1999:blog-5548560205914833324.post-53910597211786438062023-12-14T10:56:00.000+00:002023-12-14T10:56:28.608+00:00Autism research in 2023: a bit of a game-changing year<p> So, autism research in 2023. It’s been quite a year. Let me (briefly) tell you why.</p><p><b>The autism numbers game: the only way is (still) up.</b> Northern Ireland, where some great work is done to plot the annual (estimated) prevalence rate of autism spectrum disorder (ASD) in school-aged children, said <a href="https://www.health-ni.gov.uk/sites/default/files/publications/health/asd-children-ni-2023.pdf" target="_blank">1 in 20 (or 5%) in 2023</a>. The US CDC said an estimated <a href="https://pubmed.ncbi.nlm.nih.gov/36952288/" target="_blank">1 in 36 8-year olds (2.7%) were autistic in 2020</a>. The CDC also said <a href="https://pubmed.ncbi.nlm.nih.gov/36952289/" target="_blank">1 in 47 4-year olds were autistic (2%)</a>. Scotland also recently produced data observing “<a href="https://onlinelibrary.wiley.com/doi/10.1002/aur.3063" target="_blank">The prevalence of autism was 2.60% (10,089 children) in 2022</a>. This represents a 31.98% increase from the 2018 prevalence of 1.97% (7883 children).” That Scottish data, by the way, only covered those at primary school (aged 4ish-12ish years). Other sources too are still showing a growth in the prevalence of autism across other parts of the globe, including <a href="https://www.nature.com/articles/s41598-023-48114-4" target="_blank">a near 5% rate of behaviours consistent with autism or ASD in the Hadza of Tanzania</a>. All data on autism prevalence is still only heading in one direction: UP. </p><p>Importantly, the old ‘all better awareness’ arguments are slowly fizzling out as the effects of those prevalence stats are starting to show on resources and infrastructure that seemingly haven’t kept pace with the growth in numbers. Indeed, one of the head people related to the CDC autism figures, went as far as to say that <a href="https://medicalxpress.com/news/2023-03-autism-climb-highs-california.html" target="_blank">the stats don’t really support ‘better awareness’ as the primary driver</a> given that the increase is showing across various different ‘levels’ of autism that are/were unlikely to be missed or thought to be something else. Certainly here in the UK, I don’t think I’ve ever read so many reports about school place shortages (particularly specialised school place shortages) as I have this year. And unfortunately, with <a href="https://www.autism.org.uk/what-we-do/news/autism-assessment-waiting-times-2023" target="_blank">an estimated 140,000 people (mostly children and young people) awaiting assessment in England alone</a>, I fear the squeeze on resources is just going to get worse and worse. <a href="https://questioning-answers.blogspot.com/2023/03/iceberg-have-we-reached-tipping-point.html" target="_blank">Anyone care to start asking ‘why the increase’ yet?</a></p><p><b>CDC says yes to ‘profound autism’.</b> Speaking of autism ‘levels’ (as in DSM-5 autism levels of support or <a href="https://questioning-answers.blogspot.com/2023/03/the-icd-11-diagnostic-criteria-for.html" target="_blank">the ICD-11 condition combinations</a>), the CDC did something else rather important this year: producing the first ever report on the rate of profound autism in the US. So, for data covering the years 2000-2016, and using the descriptor “classified as having profound autism if they were nonverbal, were minimally verbal, or had an intelligence quotient <50” they determined that <a href="https://pubmed.ncbi.nlm.nih.gov/37074176/" target="_blank">26.7% of those with autism fitted into the profound autism category</a>. An estimated quarter of autistic people are profoundly autistic. That’s quite important.</p><p>There were mixed reactions to the CDC use of the term profound autism. Many people were happy to see it, given that it now lays the foundations for more research and more understanding that despite being united by a triad/dyad of symptom combinations, not everyone experiences autism in the same way. Look no further than the awful early mortality statistics following <a href="https://pubmed.ncbi.nlm.nih.gov/32169851/" target="_blank">the deadly triad that is autism, wandering/elopement and water safety</a> to see this in action. Of course autism by virtue of just being diagnosed, means support is required for everyone with the diagnosis. But that support will arguably differ depending on whether you possess things like communicative speech and language, present with things like self-injurious or aggressive behaviours and/or need 24-7 care to ensure that your daily needs are fulfilled. Indeed, I often think that the general lack of support post autism diagnosis is a big driver in the reticence to adopt the term profound autism in some quarters. But should people be so reticent? I mean we have similar distinctions when it comes to <a href="https://www.nhs.uk/conditions/learning-disabilities/" target="_blank">experiences of learning (intellectual) disability</a> and nobody seemingly bats an eyelid there. </p><p>There is however <a href="https://www.mdpi.com/2227-7102/13/2/106" target="_blank">more to do on profound autism</a>. This ties into other changes that are needed when it comes to assessing things like cognitive functions and communication (verbal or non-verbal) ability in relation to autism. That’ll follow as the term beds in and builds up more of a research base. Asperger syndrome gone, profound autism steps in.</p><p>What else? </p><p><b>Non-persistence of autism in (some) young kids.</b> 2023 also gave a lot more credence to the idea that the saying ‘all autism is lifelong’ probably isn’t as accurate as you might think. Looking at the developmental trajectories of around 200 kids, all diagnosed early with autism, <a href="https://pubmed.ncbi.nlm.nih.gov/37782510/" target="_blank">saw about a third of them not continuing to meet the diagnostic threshold for autism/ASD at ages 5-7 years</a> according to a big study. Other independent work <a href="https://ncbi.nlm.nih.gov/pmc/articles/PMC10172454/" target="_blank">also illuminated this topic</a> and argued against the ‘just misdiagnosed’ suggestions that some people might make and that also the state of ‘autism free’ <a href="https://pubmed.ncbi.nlm.nih.gov/38045761/" target="_blank">might have important implications for various other issues too</a>.</p><p>This was a particularly important finding for me given <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6789180/" target="_blank">our paper from a few years back</a> talking about inborn and lifelong not necessarily being the most accurate phrases for all autism. It also accords with various other studies in related areas observing that diagnoses like ADHD and depression for example, aren’t lifelong labels for absolutely everyone either. Although I noted some people tried to talk about ‘masking’ and ‘camouflaging’ as being the reasons why young kids in that JAMA study didn’t meet the thresholds for autism having previously done so, I do have to ask whether they’ve ever seen autistic kids at this age. Indeed, any child at this age, who generally aren’t renowned for their developed social etiquette abilities covering masking et al (this is also the reason that the gold-standard autism assessment instrument, the <a href="https://link.springer.com/referenceworkentry/10.1007/978-0-387-79948-3_1519" target="_blank">ADI-R</a>, codes 4-5 years separately from ‘current behaviour’). As to why autism doesn’t persist for some, well, we don’t know exactly. There was talk of <a href="https://www.spectrumnews.org/opinion/viewpoint/journal-club-why-do-some-children-lose-their-autism-diagnosis/" target="_blank">intervention potentially playing a role (behavioural intervention)</a> but it’s probably going to be a bit more complicated than just that. For now, we await further studies on this important topic including more longitudinal ones and perhaps also looking at the biology behind this phenomenon. If I was to speculate about why there is autism non-persistence for some, I might be inclined to say ‘<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8718789/" target="_blank">look to infection</a>’ for some, and how, more and more, we’re learning that infection and immune responses to infection can manifest as behaviour and developmental issues as well as in immune biology. Just me speculating, so pay no mind (although that autism in Hadza children study did nicely reignite my interest in how <a href="https://pubmed.ncbi.nlm.nih.gov/16897390/" target="_blank">infections like malaria can, through various mechanisms, also seemingly lead to autism</a>).</p><p><b>The gut-brain axis is important to autism.</b> I know a lot of people already appreciate this, but seeing it in <a href="https://pubmed.ncbi.nlm.nih.gov/37365313/" target="_blank">a peer-reviewed mega paper in 2023</a> adds a lot more weight to it. Said paper trawled through huge amounts of data about gut bacteria and the like, and concluded that there is something to see both as observation and also as potential intervention. Authors even mentioned the words ‘faecal matter transplant’ (FMT) in the context that what goes on in the gut doesn’t necessarily stay in the gut, and something that is <a href="https://www.science.org/doi/10.1126/scitranslmed.adg2970" target="_blank">rising in some autism research and other circles</a>. Allied to the gut-brain axis stuff was the reporting from other mega review papers observing that <a href="https://pubmed.ncbi.nlm.nih.gov/37565245/" target="_blank">gastrointestinal (GI) symptoms are present in roughly 55% of children with autism</a>, compared with about a quarter of non-autistic children. Constipation comes out on top. So fixed to clinical advice about treating such issues <a href="https://pubmed.ncbi.nlm.nih.gov/20048084/" target="_blank">published over 10 years ago</a>, maybe now is the time to preferentially screen and treat such issues in the context of autism? Perhaps recognise that the gut and brain are connected for quite a few labels/conditions? More on that shortly.</p><p><b>Various medical issues are over-represented in autism. </b>More important data points to the <a href="https://molecularautism.biomedcentral.com/articles/10.1186/s13229-023-00565-2">various clusters of medical (somatic) issues that seem to accompany autism across the age ranges</a>. Ranging from cardiovascular conditions to immune-mediated conditions, various studies confirmed what quite a few people already knew. With my gluten research hat on (I don’t actually have a hat made of gluten), I was glad to see that the archetypal gluten-related autoimmune condition called <a href="https://www.nhs.uk/conditions/coeliac-disease/" target="_blank">coeliac disease</a> was given mention. Who knows, between coeliac disease and the slightly greyish area of <a href="https://questioning-answers.blogspot.com/2013/09/gluten-and-autism-probably-not-coeliac.html" target="_blank">non-coeliac gluten issues that seem to be over-represented alongside autism</a>, there’s further hope for wider screening and use of a gluten-free diet in the context of autism? Oh, and just before you inquire about the research base in this area, here’s a couple of meta-analyses from the last few years - <a href="https://pubmed.ncbi.nlm.nih.gov/34617108/" target="_blank">see here</a> and <a href="https://pubmed.ncbi.nlm.nih.gov/35359629/" target="_blank">see here</a> - saying it might be worth a shot (minus any clinical or medical advice given or intended).</p><p>And there was yet more research on the psychiatric and behavioural issues that seem to be over-represented alongside autism. Importantly, and I do think needs a lot more investigation, <a href="https://pubmed.ncbi.nlm.nih.gov/37552480/" target="_blank">one study out of Canada</a> stressed the need to look at comorbid psychiatric issues as being an important driver of suicidal behaviours in the context of autism. I know such behaviours are complex and often very individual with a heavy biopsychosocial tilt, but there’s a wealth of evidence out there already suggesting that depression, bipolar disorder, personality disorder and schizophrenia spectrum disorders all convey a heightened risk for suicidal behaviours. All those conditions are well over-represented alongside a diagnosis of autism (yep, <a href="https://pubmed.ncbi.nlm.nih.gov/36057134/" target="_blank">an estimated 1 in 10 autistic people will potentially ‘transition’ to schizophrenia</a>). Screen, screen and treat (including, where appropriate, more clinical emphasis on the archetypal <a href="https://pubmed.ncbi.nlm.nih.gov/32561344/" target="_blank">anti-suicidal agent that is lithium</a> used in the right context).</p><p><b>Late 2023 research entry: CM-AT results are really, really, really promising.</b> I’ve been following the CM-AT story <a href="https://questioning-answers.blogspot.com/2019/06/the-rise-and-rise-of-cm-at-for-autism.html" target="_blank">for quite a while on this blog</a> and beyond. Basically, it concerns a pancreatic enzyme therapy designed for autism that has already crossed quite a few methodological trial hurdles. Then, in November 2023 lo and behold, <a href="https://pubmed.ncbi.nlm.nih.gov/38032645/" target="_blank">the results of a double-blind, placebo-controlled trial that say, yes</a>, following the gold-standard trial design, CM-AT is good for treating/managing irritability and agitation in the context of autism in pre-schoolers. Said treatment is also likely safe and effective. This is a potential game-changer and opens the door to things like regulatory approval. Also, exquisite evidence for the whole ‘behaviour is biology’ tenet and the important role of the gut-brain axis in autism, yet again.</p><p>There was so much more other science published this year, across all-manner of different topics. Certainly far too much for me to put into one blogpost. I’m a great believer in your citizen scientists and so would encourage everyone to look-see and take part. I can’t help but draw your attention to <a href="https://journals.sagepub.com/doi/full/10.1177/27546330231216548" target="_blank">another paper</a> that basically said the ‘person with autism’ vs ‘autistic person’ arguments typically seen on social media aren’t really worth a dime. Ask the person how they want to be addressed. Oh, and remember, people aren’t ‘neurotypes’ either. They’re people. </p><p><b>And finally… Saying farewell to Donald.</b></p><p>Finally, [I can see you’re yawning] a non-sciency thing to mention. ‘Patient 1’ from the great Leo Kanner’s <a href="https://simonsfoundation.s3.amazonaws.com/share/071207-leo-kanner-autistic-affective-contact.pdf" target="_blank">seminal paper describing autism</a> - Donald Triplett - passed away. If you’ve ever read or watched ‘<a href="https://www.theguardian.com/books/2016/jan/17/different-key-story-autism-review-donvan-zucker" target="_blank">In a Different Key</a>’ you’ll have read about him or seen him. Of all the things said about Donald in <a href="https://www.theatlantic.com/ideas/archive/2023/06/autism-first-diagnosis-donald-triplett/674453/" target="_blank">the various obituaries to him</a>, I think the overwhelming idea that comes across is how much community was important to him; both being part of a supportive community and having a great community around him. Loads of lessons to be learned there. My advice: seek out those who wish to foster community, and there are lots of good people of this ilk. Here's to 2024 and beyond.</p>Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-3574692169120694822023-03-26T19:21:00.003+01:002023-03-27T10:09:20.076+01:00Iceberg! Have we reached a tipping point in autism numbers and assessment referrals?<p>Sorry. I really am. I'm back at the autism research blogging yet again, twice in a week. I know some people will be unhappy about that (I can hear the Twitterer cries already: '<i>keep yer bloody mouth shut!</i>') but hopefully some won't be so unhappy. But writing this on a nice sunny March Sunday evening with a rerun of Titanic playing on the telly, I'm gonna talk about whether or not we've just hit the iceberg when it comes to US autism (estimated) prevalence (and those from elsewhere) and the huge backlog of autism referrals that's been making news here in <a href="https://www.lbc.co.uk/radio/special-shows/the-mystery-hour/why-is-britain-sometimes-called-blighty/" target="_blank">Blighty</a> aka dear old England. I'll also come clean and mention that I actually do like the film Titanic. There I said it. </p><p>I appreciate that my use of the word 'iceberg' in the context of this blog is not likely to sit well with some people. How dare I talk about icebergs in the context of autism prevalence and such like? Well, I dare because right now there's a lot of people who are genuinely concerned that more than ever we might have started to head into and indeed, already started to scrape past, an iceberg that's been on the horizon for a number of years. And in the current climate of post-pandemic financial and resource pressures, we haven't exactly got the strongest of hulls in this societal ship in which we're all passengers on. </p><p>So, last week we had the estimated autism prevalence figures for 8-year olds in the United States from the CDC (<a href="https://pubmed.ncbi.nlm.nih.gov/36952288/" target="_blank">see here</a>). Actually we had another set of (estimated) figures relating to 4-year olds too (<a href="https://pubmed.ncbi.nlm.nih.gov/36952289/" target="_blank">see here</a>). The headline figure: well, words like '<a href="https://www.futurity.org/autism-rates-united-states-2895212/" target="_blank">all-time high</a>' have been used to cover the <b>1 in 36 8-year olds</b> estimated to have autism or an autism spectrum disorder (ASD). As for 4-year olds, and as per other reports (<a href="https://www.spectrumnews.org/news/u-s-autism-prevalence-continues-to-rise-as-race-and-sex-gaps-shrink-new-stats-show/" target="_blank">see here</a>), <b>1 in 47 4-year olds</b> was the headline figure, a leap from previous reports for this age group (1 in 59 in 2018). Both sets of figures chart the estimated numbers of cases of childhood autism and illustrate the ever upward trend that we've been seeing over the past few decades in the US and beyond.</p><p>Most press coverage of the CDC data have not sugar-coated it. Yes, there's been talk about how racial disparities in screening and assessment have been reduced in the recent figures and that's a good thing. There's also talk about the (subtly) declining male:female ratio which again, represents good progress in detection and identification. But then the conversations move to the <i>need</i> to provide suitable services. Y'know things like education, social and health services, and this is where the tone gets a little more serious as per the realisation that there's probably not enough suitable or appropriate services for everyone, and what services there currently are, are probably going to become even more scarce as more people need them. As an aside it's interesting too that this time around, some discussions on the new CDC figures have basically poo-pooed the whole '<i>it's all better awareness</i>' arguments: "<i><a href="https://www.futurity.org/autism-rates-united-states-2895212/" target="_blank">This is not just a phenomenon of becoming more sensitive to subtly impaired kids</a></i>" according to one very senior person intricately involved in the CDC process of autism counting. Progress indeed given the amount of times that argument has been used, fairly unscientifically, in the past.</p><p>On this side of the Pond, I think we're starting to really see that process of 'lack of suitable services' playing out in real time. We - the UK we - are still waiting for a truly national autism prevalence initiative but we have some good counting processes in place in relation to countries of the UK like Northern Ireland and their forward-thinking in collecting and publishing school-aged autism prevalence data (<a href="https://questioning-answers.blogspot.com/2019/05/estimated-autism-prevalence-in-northern-ireland-2018-2019.html" target="_blank">see here</a>). Northern Ireland is, I think, due to report in a few weeks time but the last time around the prevalence of autism in school-aged children came it at <b>1 in 21 children</b> (<a href="https://www.health-ni.gov.uk/sites/default/files/publications/health/asd-children-ni-2022.pdf" target="_blank">see here</a>) or <b>4.7% of school-aged children with autism in 2021/2022</b>. I also happened to stumble on some other, more England-based data recently (<a href="https://research.gold.ac.uk/id/eprint/33269/" target="_blank">see here</a>) that mentioned that "<i>2.84% of 10-14-year olds were diagnosed (1 in 35).</i>" Obviously, one has to be a little careful with that last statistic. What this means is that the latest CDC figures for the US are not an isolated incident. They're more likely part of a global trend where the old 1% prevalence figure is completely out of sight in the rear view mirror.</p><p>As to that 'lack of suitable services'? Loads of examples to pick from. Take for example the recent BBC news report (<a href="https://www.bbc.co.uk/news/uk-england-york-north-yorkshire-65037562" target="_blank">see here</a>) on twins, yes twins, both diagnosed with autism (and dare I say autism heading more towards 'profound'), both with <a href="https://educationadvocacy.co.uk/what-is-a-ehcp/" target="_blank">EHCPs (education and healthcare plans)</a> yet one twin offered a place at a specialised setting, the other not. The reason: the specialised setting is '<i>over-subscribed</i>'. Twins. There's loads more other examples like this. Such examples complemented (if that's the right word) by multiple reports of plans to build more and more specialised schools with seemingly little realisation that said schools take a while to be built and then also need to be suitably staffed, which leads us down another potential rabbit hole. Another aside: we have some of the best teaching cupboards (yes, you heard right) in the world here in England (<a href="https://www.bbc.co.uk/news/education-64418797" target="_blank">see here</a>).</p><p>And if you think things are critical when it comes to resources for those lucky enough to already have a diagnosis, spare a thought for the thousands and thousands of people - predominantly school-aged children - who are waiting just to get on a waiting list for autism assessment (<a href="https://www.bbc.co.uk/news/uk-wales-65040893" target="_blank">see here</a>). In England alone there's about 140,000 people waiting at the time of writing (<a href="https://www.autism.org.uk/what-we-do/news/autism-assessment-waiting-times-2023" target="_blank">see here</a>), again predominantly school-aged children. And now another reality: one particular part of England has recently decided that the huge numbers of people, again predominately children, wanting an autism assessment will be 'triaged' to filter out 'the most needy' (<a href="https://www.bbc.co.uk/news/uk-england-bristol-65037091" target="_blank">see here</a>). That's <a href="https://en.wikipedia.org/wiki/Triage" target="_blank">triage</a> as in what's normally seen on the battlefield when care is rationed according to those most in need. So children now have to be 'in crisis' before they're put on a list for a referral for autism assessment. We've hit the iceberg, haven't we? </p><p>I don't really know what else to say about all this. Yes, it's great that everyone is getting better at recognising autism. Yes, it's great that more people are being detected and referred for an assessment. We can pat ourselves on the back for that. Unfortunately, as a society we've had our collective heads buried in the sand about <i>what rising numbers of need actually means</i>. And now, it's having real-world implications for many people and their loved ones. </p><p>How many lifeboats did you say we have?</p><p>-----</p><p>Maenner MJ, Warren Z, Williams AR, Amoakohene E, Bakian AV, Bilder DA, Durkin MS, Fitzgerald RT, Furnier SM, Hughes MM, Ladd-Acosta CM, McArthur D, Pas ET, Salinas A, Vehorn A, Williams S, Esler A, Grzybowski A, Hall-Lande J, Nguyen RHN, Pierce K, Zahorodny W, Hudson A, Hallas L, Mancilla KC, Patrick M, Shenouda J, Sidwell K, DiRienzo M, Gutierrez J, Spivey MH, Lopez M, Pettygrove S, Schwenk YD, Washington A, Shaw KA. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Surveill Summ. 2023 Mar 24;72(2):1-14. doi: 10.15585/mmwr.ss7202a1. PMID: 36952288.</p><p>Shaw KA, Bilder DA, McArthur D, Williams AR, Amoakohene E, Bakian AV, Durkin MS, Fitzgerald RT, Furnier SM, Hughes MM, Pas ET, Salinas A, Warren Z, Williams S, Esler A, Grzybowski A, Ladd-Acosta CM, Patrick M, Zahorodny W, Green KK, Hall-Lande J, Lopez M, Mancilla KC, Nguyen RHN, Pierce K, Schwenk YD, Shenouda J, Sidwell K, Vehorn A, DiRienzo M, Gutierrez J, Hallas L, Hudson A, Spivey MH, Pettygrove S, Washington A, Maenner MJ. Early Identification of Autism Spectrum Disorder Among Children Aged 4 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Surveill Summ. 2023 Mar 24;72(1):1-15. doi: 10.15585/mmwr.ss7201a1. PMID: 36952289.</p><p><br /></p>Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-60815735747569749892023-03-20T18:51:00.005+00:002023-03-21T10:50:41.961+00:00The ICD-11 diagnostic criteria for autism: criteria that actually gets it right?<p>I'd love to say that this post represents me getting back into autism research blogging but alas, I'm not sure I'd be able to stick to any sort of routine or plan. Work, family, karate, so many Star Wars spin-offs to watch, you know what it's like. Suffice to say that something important brought me back to making this entry: the ICD-11 criteria for autism (<a href="https://icd.who.int/browse11/l-m/en#/http%253a%252f%252fid.who.int%252ficd%252fentity%252f437815624" target="_blank">see here</a>). </p><p>So why blog about it? Well simply because I reckon that this latest version of one of the major ways that autism or autism spectrum disorder (ASD) is diagnosed is basically as good as we've ever got at defining autism and the various nuances around an autism diagnosis. </p><p>Why? Lots of reasons, and I would invite as many people as possible to survey the criteria which is free for all to read. For me, it's as follows:</p><p>1. Autism, the catch-all diagnosis, is now not just singular autism, it's more. Much more. The criteria still consists of the timeless social communication issues (social affect as it was once called) and "<i>persistent restricted, repetitive, and inflexible patterns of behaviour, interests, or activities.</i>" It's still talks about early onset (although the 'before 3 years of age' bit is long gone as in previous versions). Importantly it still talks about symptoms resulting in "<i>significant impairment in personal, family, social, educational, occupational or other important areas of functioning.</i>" This last point is often not as well remembered as it should be, particularly in certain social media circles. But more than all that we now have separate diagnostic sub-codings for things like the presence of <a href="https://www.nhs.uk/conditions/learning-disabilities/" target="_blank">intellectual (learning) disability</a> and functional language impairment in a sort of pick-and-mix matrices combination. The DSM-5 also tried this with their 'levels of support' or, dare I say it 'severity levels' (<a href="https://www.autismspeaks.org/autism-diagnosis-criteria-dsm-5" target="_blank">see here</a>). Allied to all that is another sub-coding: <i>loss of previously acquired skills</i>. Y'know, <a href="https://questioning-answers.blogspot.com/2018/03/regression-in-autism-rule-rather-than-exception.html" target="_blank">all those reports of regression</a> or plateau in skills that parents and caregivers talked about? They've been taken seriously and at last, now feature as part of the diagnostic work-up. Minus any 'I told you so' sentiments, we've already published on this a few years back (<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6789180/" target="_blank">see here)</a>. The road has been long. Wow.</p><p>2. Alongside the core clinical features are quite a few other headings covering other types of behaviour that one may see accompanying autism. <a href="https://questioning-answers.blogspot.com/2017/03/autism-and-anxiety-disorder-zooming-in-on-details.html" target="_blank">Anxiety</a>, <a href="https://questioning-answers.blogspot.com/2016/06/epilepsy-begets-autism.html" target="_blank">seizures</a> and here's one: <a href="https://questioning-answers.blogspot.com/2016/05/the-persistence-of-self-injury-in-autism.html" target="_blank">self-injurious behaviours (SIB)</a>. No it doesn't make for great reading (SIB can be absolutely devastating to the person concerned and their family) but at last, acknowledgement that it's an issue for some. There's also talk about other comorbidities / multi-morbidities (that's comorbidity not co-occurrence) to look out for. Some psychiatric, some behavioural and some somatic. Get ready for another 'I told you so' moment (<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7335278/" target="_blank">see here</a>). </p><p>3. Standby for something really important included in the ICD-11 criteria: a list of some 18 other conditions where autistic signs and symptoms can significantly present is also provided. This is new. The list ranges from things like <a href="https://questioning-answers.blogspot.com/2016/08/76-of-youths-with-autism-meet-adhd-more-like-59.html" target="_blank">ADHD (attention-deficit hyperactivity disorder)</a> to <a href="https://questioning-answers.blogspot.com/2019/04/autistic-traits-in-schizophrenia-meta-analysed.html" target="_blank">schizophrenia</a> to <a href="https://questioning-answers.blogspot.com/2018/01/autistic-traits-occurring-in-borderline-personality-disorder.html" target="_blank">personality disorder(s)</a>. Developmental coordination disorder (DCD) aka dyspraxia is also in there and acknowledges something that <a href="https://questioning-answers.blogspot.com/2011/03/kanners-original-autism-descriptions.html" target="_blank">even the great Leo Kanner talked about</a>. This will help clinicians (<a href="https://questioning-answers.blogspot.com/2019/04/why-words-everyone-of-us-hovers-autism-spectrum-dangerous.html" target="_blank">yes, the people who conduct formal autism assessments</a>) no end. It means that they should also be on the look out for various other conditions when they make their assessments (indeed, if any of those listed overlapping conditions are also present in clinic, it might mean looking for autism too). I'll also, at this point, add in the almost forgotten issue of <a href="https://www.autismspeaks.org/expert-opinion/social-communication-disorder" target="_blank">social (pragmatic) communication disorder (SCD) from the DSM-5</a> too. I'm also interested in that list of overlapping conditions because they seem to becoming more and more important to autism. Take schizophrenia for example. Did you know that an estimated 1 in 10 people with autism might be at risk of transitioning over to schizophrenia over a 10 year period according to <a href="https://pubmed.ncbi.nlm.nih.gov/36057134/" target="_blank">this study from 'big data Taiwan'</a>? And more recently we've seen research all about ADHD 'transitioning' into ASD as a primary diagnosis (<a href="https://pubmed.ncbi.nlm.nih.gov/36915033/" target="_blank">see here</a>); prodromal period anyone? Oh, and I should also mention that the word 'encephalitis' figures in those boundary conditions. I'd like to think this would trigger a lot more discussion and study on how immune system / inflammatory conditions *might* play a role in at least some autism. I say this on the back of our recent-ish review of autoimmune encephalitis and autism (<a href="https://www.frontiersin.org/articles/10.3389/fpsyt.2021.775017/full" target="_blank">see here</a>) and my continuing interest in such things.</p><p>So there you have it citizens (hat-tip to the late great Christopher Plummer!), the ICD-11 diagnostic criteria for autism. Obviously we'll have to see where it all goes, but certainly, as the criteria beds in, diagnostic reports will get more and more detailed which has to be a boon for things like <a href="https://educationadvocacy.co.uk/what-is-a-ehcp/" target="_blank">EHCPs (Education, Health and Care Plans)</a> and getting things right for people (particularly children) when diagnosed. As for research, well, that will benefit too, given the more detailed diagnostic starting point other than just 'autism vs. non-autistic controls'. I reckon we're going to be seeing more and more objective biological markers in the coming years. One more thing: you've no doubt heard about the term '<a href="https://www.spectrumnews.org/opinion/viewpoint/its-time-to-embrace-profound-autism/" target="_blank">profound autism</a>'? Well, it looks like ICD-11, like DSM-5, is going to forward this concept a lot more in times to come. </p><p>Peace be with you.</p><p>-----</p><p>Hsu TW, Chu CS, Tsai SJ, Hsu JW, Huang KL, Cheng CM, Su TP, Chen TJ, Bai YM, Liang CS, Chen MH. Diagnostic progression to schizophrenia: A nationwide cohort study of 11 170 adolescents and young adults with autism spectrum disorder. Psychiatry Clin Neurosci. 2022 Dec;76(12):644-651. doi: 10.1111/pcn.13468. Epub 2022 Sep 27. PMID: 36057134.</p><p>Kopp S, Asztély KS, Landberg S, Waern M, Bergman S, Gillberg C. Girls With Social and/or Attention Deficit Re-Examined in Young Adulthood: Prospective Study of Diagnostic Stability, Daily Life Functioning and Social Situation. J Atten Disord. 2023 Mar 13:10870547231158751. doi: 10.1177/10870547231158751. Epub ahead of print. PMID: 36915033.</p><p>Sala R, Amet L, Blagojevic-Stokic N, Shattock P, Whiteley P. Bridging the Gap Between Physical Health and Autism Spectrum Disorder. Neuropsychiatr Dis Treat. 2020 Jun 30;16:1605-1618. doi: 10.2147/NDT.S251394. PMID: 32636630; PMCID: PMC7335278.</p><p>Whiteley P, Carr K, Shattock P. Is Autism Inborn And Lifelong For Everyone? Neuropsychiatr Dis Treat. 2019 Oct 7;15:2885-2891. doi: 10.2147/NDT.S221901. PMID: 31632036; PMCID: PMC6789180.</p><p>Whiteley P, Marlow B, Kapoor RR, Blagojevic-Stokic N, Sala R. Autoimmune Encephalitis and Autism Spectrum Disorder. Front Psychiatry. 2021 Dec 17;12:775017. doi: 10.3389/fpsyt.2021.775017. PMID: 34975576; PMCID: PMC8718789.</p><p>-----</p><p><br /></p>Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-90223474503615755212020-03-04T11:04:00.002+00:002020-03-04T11:04:29.576+00:00Neurodiversity 2.0: Judy Singer setting the record straight<div style="text-align: justify;">
<span style="font-family: inherit;">I know I've kinda let this blog slip a little in recent months but work is work and blogging is blogging. Anyhow, I'm back with a short post to bring to your attention a rather important 'revision' presented by </span><a href="https://www.amazon.co.uk/NeuroDiversity-Birth-Idea-Judy-Singer-ebook/dp/B01HY0QTEE" style="font-family: inherit;">Judy Singer</a><span style="font-family: inherit;"> on her blog titled: NeuroDiversity 2.0 (</span><a href="https://neurodiversity2.blogspot.com/p/what.html" style="font-family: inherit;">see here</a><span style="font-family: inherit;">).</span><br /><span style="font-family: inherit;">I'm not going to rehash everything that Judy talks about in her post because it's all done exceptionally well in her blogpost. </span><a href="https://en.wikipedia.org/wiki/Neurodiversity" style="font-family: inherit;">Neurodiversity</a><span style="font-family: inherit;"> is the term that has kinda turned into a movement (</span><a href="https://neurodiversitymanifesto.com/" style="font-family: inherit;">even a political movement</a><span style="font-family: inherit;">) which has found something of a voice particularly on social media. As a critical voice to neurodiversity (</span><a href="https://questioning-answers.blogspot.com/2019/07/the-things-people-say-about.html" style="font-family: inherit;">see here</a><span style="font-family: inherit;">) I would say that the concept of neurodiversity has been pushed way beyond it's original meaning and intention and well outside the scientific remit of the description (</span><a href="https://questioning-answers.blogspot.com/2017/05/there-is-no-single-way-for-brain-to-be-normal-neurotypical.html" style="font-family: inherit;" target="_blank">no, no-one is 'neurotypical' or NT</a><span style="font-family: inherit;">). In her blogpost, Judy aims to clarify some important points about her description of neurodiversity and, as with all good ideas, adapts and modifies them as knowledge has increased. </span><br /><br /><span style="font-family: inherit;">Some important things are mentioned by Judy which are worthy of note:</span><br /><br /></div>
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<li><span style="font-family: inherit;">"</span><i style="font-family: inherit;">Neurodiversity is NOT a Psycho-Medical diagnosis for individuals.</i><span style="font-family: inherit;">" She goes on to say that "</span><i style="font-family: inherit;">if Worker A has identified themselves with a specific syndrome, e.g. Autism, in which case call them "autistic". But they are no more neurodiverse than anyone else on the planet.</i><span style="font-family: inherit;">" In other words, neurodiverse or neurodivergent are not replacements for autism or autism spectrum disorder (ASD) and they don't magically bestow some differing neurological feature(s) or advantage(s). And just before you ask, "</span><i>undiagnosed neurodiversity issues</i>"<span style="font-family: inherit;"> (<a href="https://www.bbc.co.uk/news/uk-wales-51384024" target="_blank">see here</a>) is basically psychobabble BS and a good example of how neurodiversity has gone well beyond it's remit.</span></li>
<li style="font-family: inherit;"><span style="font-family: inherit;">"<i>Neurodiversity is a term that refers to an obvious and indisputable feature of Earth's biosphere.</i>" Basically, everyone is neurodiverse. With all the millions of differing biological processes that everyone encounters and undergoes, every second of every day, neurodiversity is the property of populations not individuals.</span></li>
<li style="font-family: inherit;"><span style="font-family: inherit;">"<i>It is not a synonym for "Neurological Disorder".</i>" I might be repeating myself here but whether diagnosed or 'self-diagnosed' (<a href="https://questioning-answers.blogspot.com/2019/04/why-words-everyone-of-us-hovers-autism-spectrum-dangerous.html">another inherently problematic issue</a>) with anything remotely related to behaviour and/or the brain, identifying as 'neurodiverse' says nothing about a person and their presentation. </span></li>
<li style="font-family: inherit;"><span style="font-family: inherit;">"<i>Neurodiversity is a positive principle, but it is NOT a moral principle.</i>" As the property of a population, neurodiversity says just that: everyone is different, and we should be proud of our individual differences. I know sometimes people don't like to be seen as different (group membership is a powerful thing), but everyone has strengths and everyone has weaknesses at an individual level. Yes, there are things that society can do to ensure that more strengths are seen as strengths, but that's a different topic altogether.</span></li>
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<br /><span style="font-family: inherit;">I'm not expecting Judy's revisions to be immediately and universally accepted by everyone. There are some really ingrained views and opinions about neurodiversity out there, and to some degree, people have already adapted the term to fit their experience and/or agenda. I am hopeful however that we can move on from identity politics (of which neurodiversity has certainly been a focal point) and start to move forward on this. Moving forward means reclaiming labels like autism and ADHD and various other labels that have often got missed from the whole neurodiversity thing (<i>e.g.</i> schizophrenia and psychosis) and moving away from the idea that there is something universally and inherently 'different' about the minds of those with such labels. Science has yet to pinpoint anything that universally distinguishes those diagnosed with autism from those not diagnosed with autism outside of the diagnostic features (similar to every other diagnostic label with a behavioural element to it). If and when it does, then we can start talking about possible neurodivergence, but until then it's all hot air and bluster. </span><br />
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<span style="font-family: inherit;">Bravo Judy for the revision and clarification.</span><br /><br /><span style="font-family: inherit;">----------</span><br /><br /><br /></div>
Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-29175054042796919512019-09-27T10:33:00.002+01:002019-09-27T10:33:38.043+01:00Autism diagnosis, numbers and politicsIt's been a while since I lasted posted on this blog. Apologies to those who've enjoyed my musings but time has been in short supply these past few weeks. But I'm here now...<br />
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Today I want to bring to your attention a couple of papers and news items that have caught my eye in the past few weeks. The first is <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6704749/" target="_blank">the paper by Eya-Mist Rødgaard and colleagues</a> [1] which garnered quite a bit of media attention (<a href="https://www.theguardian.com/commentisfree/2019/aug/26/autism-neurodiversity-severe" target="_blank">see here</a>). The crux of the Rødgaard findings were that "<i>differences between individuals with autism and those without autism have decreased over time, which may be associated with changes in diagnostic practices.</i>" It was a meta-analysis paper and so kinda reiterated what had already been discussed in the peer-reviewed science literature before, in that the autism of today might not necessarily the same as the autism of yesteryear (<a href="https://questioning-answers.blogspot.com/2018/02/does-diagnosis-of-autism-today-mean-same-as-autism-decades-ago.html" target="_blank">see here</a>).<br />
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Second up is <a href="https://pediatrics.aappublications.org/content/early/2019/09/24/peds.2019-0811" target="_blank">another recent paper from Benjamin Zablotsky and colleagues</a> [2] (<a href="https://questioning-answers.blogspot.com/2017/12/us-national-health-interview-survey-autism-rates-beyond.html" target="_blank">a name mentioned a few times on this blog</a>) indicating that the only way is up when it comes to diagnoses of developmental disabilities such as autism. I noted that some interpretations of the Zablotsky results headed down the old 'better awareness' and 'not a true rise' routes (<a href="https://www.spectrumnews.org/news/apparent-new-rise-in-autism-may-not-reflect-true-prevalence/" target="_blank">see here</a>) despite the quite astounding increase in cases from "<i>1 in 91 children in 2009 to 1 in 40 in 2017.</i>" In any other label / condition / disorder, such a rise would probably provoke some important questioning about why the increase and what factors could be associated with it (including the Rødgaard explanation). Needless to say that children become adults, and quite a lot of those 1 in 40 children are going to require more Government planning and money to ensure that they live good, healthy and productive lives as both children and adults. And just in case you think such a rise is a United States issue only, take a look at the stats for Northern Ireland in recent years (<a href="https://questioning-answers.blogspot.com/2019/05/estimated-autism-prevalence-in-northern-ireland-2018-2019.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2019/02/autism-prevalence-in-northern-ireland-only-way-is-up.html" target="_blank">see here</a>) and tell me that there isn't a true rise there either.<br />
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Finally a few interesting lay articles have been published in recent weeks which deserve highlighting and debating. <a href="https://aeon.co/essays/why-the-neurodiversity-movement-has-become-harmful" target="_blank">The first from neuroscientist and science writer Mo Costandi</a> ruffled some feathers in his critique of <a href="https://questioning-answers.blogspot.com/2019/07/the-things-people-say-about.html" target="_blank">the concept of neurodiversity</a>. The by-line to the article said it all: "<i>The movement has good intentions, but it favours the high-functioning and overlooks those who struggle with severe autism.</i>" <a href="https://www.vox.com/first-person/2019/5/6/18531551/greta-thunberg-autism-aspergers" target="_blank">The second article from Steve Silberman</a> tackles a slightly different, but nonetheless related issue, on how "<i>Greta Thunberg became a climate activist not in spite of her autism, but because of it.</i>" Both articles, whilst sharing some differences, stress how the label of autism covers a wide, wide variety of presentations and outcome. They also serve to highlight how there is seemingly no way that one can possibly advocate for the entire autism spectrum as some sort of singular label / condition / disability based on the different wants, needs and desires of such a diverse population. The sooner we start to take <a href="https://questioning-answers.blogspot.com/2015/02/what-have-we-learned-about-autism.html" target="_blank">the plural 'autisms'</a> more seriously, the better for everyone...<br />
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To close, no two brains are the same <a href="https://twitter.com/UOSPsychology/status/1177257220901408768" target="_blank">as seen in this 'cool' graphic</a>. In the coming weeks, I'll be talking about a few papers that should be appearing in the peer-reviewed domain that I've been involved in authoring that stress such an important point.<br />
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[1] Rødgaard EM. <i>et al</i>. Temporal Changes in Effect Sizes of Studies Comparing Individuals With and Without Autism: A Meta-analysis [published online ahead of print, 2019 Aug 21]. <i>JAMA Psychiatry</i>. 2019;e191956.<br />
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[2] Zablotsky B. <i>et al</i>. Prevalence and Trends of Developmental Disabilities among Children in the United States: 2009–2017. <i>Pediatrics</i>. 2019. September.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-38615659899004918902019-07-30T09:44:00.001+01:002019-07-30T09:44:25.096+01:00The things people say about neurodiversity...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1top7WMlx4RlgGgjKxsGc70i2smiwu34p_Cb9z6jdqKQXdhU3frlmVUhCwY6LYaYCNgH5cdCoWIVPrUUjRaQKMzbTBmUuQ3CwokbeY7BwClY-8oLumMvCo0AOKQWQRKdiyMLvm7eQysA7/s1600/Fullscreen+capture+05072019+121424.bmp.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="866" data-original-width="976" height="283" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1top7WMlx4RlgGgjKxsGc70i2smiwu34p_Cb9z6jdqKQXdhU3frlmVUhCwY6LYaYCNgH5cdCoWIVPrUUjRaQKMzbTBmUuQ3CwokbeY7BwClY-8oLumMvCo0AOKQWQRKdiyMLvm7eQysA7/s320/Fullscreen+capture+05072019+121424.bmp.jpg" width="320" /></a>"<i>Being neurodiverse means that your brain is wired differently and thinks differently about things.</i>"<br />
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That was one of the memorable quotes that was included in <a href="https://www.bbc.co.uk/newsround/48799145" target="_blank">a piece on the BBC Newsround website recently</a> highlighting an arts project designed "<i>to raise awareness and celebrate a range of conditions under the umbrella term of Neurodiversity, including autism and dyslexia.</i>" More information about neurodiversity by the way, <a href="https://questioning-answers.blogspot.com/2019/01/the-neurodiversity-movement-is-arguably-still-in-its-infancy.html" target="_blank">can be seen here</a>. The page has seemingly since been altered for whatever reason...<br />
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Whilst noble in intent, the inclusion of evidence-free phrases about 'being wired differently' were included in the original text. Even more worryingly was the suggestion that: "<i>The idea behind Neurodiversity is that conditions - such as autism - should be seen not as disabilities, but as perfectly normal differences between people.</i>" Autism shouldn't be seen as a disability eh? I'm sure that lots and lots of autistic people and their families and loved ones <a href="https://www.ncsautism.org/blog//the-silencing-of-severe-autism-across-the-pond" target="_blank">may disagree</a> with such a contravention to how autism is actually diagnosed (on the basis that: "<i><a href="https://www.autismspeaks.org/dsm-5-criteria" target="_blank">symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning</a></i>").<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1qx36gPp5_zNan7YpABUskNCornNPEvJ2OLMFMr0_6KMHTjVkdu_I0ratLHxCb36ngS8-tw0wO-mbW3U23mK5u86HF8jl7ul6dXwybYK2-p56Cj67N-yB7i359KzLip4wD0l8aVC7Sfb-/s1600/Fullscreen+capture+05072019+121917.bmp.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="164" data-original-width="634" height="102" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1qx36gPp5_zNan7YpABUskNCornNPEvJ2OLMFMr0_6KMHTjVkdu_I0ratLHxCb36ngS8-tw0wO-mbW3U23mK5u86HF8jl7ul6dXwybYK2-p56Cj67N-yB7i359KzLip4wD0l8aVC7Sfb-/s400/Fullscreen+capture+05072019+121917.bmp.jpg" width="400" /></a>Such a piece did not go unnoticed, with even the person credited with coming up with the term neurodiversity calling it out and posting a reminder to everyone about what was intended by her original description of the term. She's of course right to point out that everyone is neurodiverse, and how associated terms like neurotypical (NT), that still keep cropping up in the peer-reviewed science literature, are about as evidence-free as one could possibly get (<a href="https://questioning-answers.blogspot.com/2017/05/there-is-no-single-way-for-brain-to-be-normal-neurotypical.html" target="_blank">see here</a>).<br />
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The inclusion of other phrases citing 'famous people' who should also be considered neurodiverse adds to the fluffiness of the original news piece. That being said, at least there wasn't an attempt to rewrite history as has kinda been suggested on other occasions (<a href="https://questioning-answers.blogspot.com/2019/02/a-genius-saviour-but-he-was-also-autistic.html" target="_blank">see here</a>) nor were the words 'everyone hovers somewhere along the autistic spectrum' used (<a href="https://questioning-answers.blogspot.com/2019/04/why-words-everyone-of-us-hovers-autism-spectrum-dangerous.html" target="_blank">see here</a>) so one should be thankful for that.<br />
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I get that such news pieces want to encourage people to think differently about those with autism, ADHD and various other labels. I get that role models are important to young people whether diagnosed or not with this, that and t'other. But I do expect more from valued news channels such as the BBC. I expect them to be evidence-based. Even Newsround (<a href="https://en.wikipedia.org/wiki/Newsround" target="_blank">which served me well in my younger years</a>) should be evidence-based given the audience that it's aimed at. And to perpetuate a myth that autism is not a disability is, in my view, only going to further contribute to the wide-ranging inequalities that many people on the autism spectrum face day in, day out whether their disability is 'hidden' or not.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com1tag:blogger.com,1999:blog-5548560205914833324.post-39101424717421893612019-07-22T15:00:00.000+01:002019-07-22T15:00:01.346+01:00Edentulousness (no natural teeth) and intellectual (learning) disabilityEdentulousness: "<i><a href="https://en.wiktionary.org/wiki/edentulousness" target="_blank">The property of being edentulous; lack of teeth.</a></i>"<br />
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I was brought to talk about edentulousness on this blog as a result of <a href="https://www.ncbi.nlm.nih.gov/pubmed/31062460" target="_blank">the findings reported by Kinnear and colleagues</a> [1] and their observations suggesting that: "<i>Adults with IDs</i> [<a href="https://en.wikipedia.org/wiki/Intellectual_disability" target="_blank">intellectual disability</a>]<i> have a high prevalence of edentulousness.</i>"<br />
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Based on data from an "<i>adult cohort with IDs residing in Greater Glasgow and Clyde, Scotland</i>", researchers compared rates of edentulousness in their 560 adults with ID with (asymptomatic) population data (n=2547) on this issue. The results were pretty worrying as "<i>rates of edentulousness were consistently higher in the ID cohort</i>" across various different age ranges: "<i>9% vs. 1% aged 25-34 years; 22% vs. 2% aged 35-44 years; 39% vs. 7% aged 45-54 years; 41% vs. 18% aged 55-64 years; and 76% vs. 34% aged 65-74 years.</i>" Researchers also concluded that edentulousness was quite a bit more likely in those described as having "<i>severe IDs</i>".<br />
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When it came to other factors outside of ID severity that might be related to edentulousness, a few issues were observed such as "<i>taking antipsychotics</i>" and "<i>living in the most deprived neighbourhoods.</i>" Other variables such as the presence of a diagnosis of autism and "<i>problem behaviours</i>" were are told, did not reach the thresholds for 'sufficient evidence'.<br />
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Why is all this important you might ask? Well, for lots of reasons, not least that the Kinnear results potentially highlight the important (continuing) issue of health inequality in relation to learning (intellectual) disability (<a href="https://questioning-answers.blogspot.com/2018/05/health-inequalities-in-relation-to-people-learning-disabilities.html" target="_blank">see here</a>). Indeed, one of my first thoughts when I read the Kinnear results is that quite a few of those news reports about people with learning disabilities that have been seen down the years, show people missing teeth. I can't help thinking what such pictures do for a person and their self-esteem. Even worse, such findings further highlight how for <u>some</u> people with ID, the state of edentulousness is literally forced on them (<a href="https://www.bbc.co.uk/news/uk-england-hereford-worcester-46522258" target="_blank">see here</a>) with little or no regard for the views of them or indeed their loved ones.<br />
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Such findings do suggest that organisations need to try harder when it comes to improving the oral health of those with ID. I'm minded to suggest that those people who have a history of poor diet, those who are <a href="https://questioning-answers.blogspot.com/2012/06/takin-peek-at-pica.html" target="_blank">prone to pica</a> (eating non-edible objects), those who have <a href="https://www.nhs.uk/conditions/teeth-grinding/" target="_blank">bruxism</a> (teeth grinding) and/or those who have a history of persistent vomiting should perhaps be afforded particular dental attention. The link with antipsychotic use? Well, I also think more needs to be done in this area. There is already <a href="https://www.ncbi.nlm.nih.gov/pubmed/28744845" target="_blank">some data on medicines affecting oral hygiene</a> [2] among which antipsychotics seem to have a place. The hows-and-whys need a little more understanding outside of the suggestion of <a href="https://en.wikipedia.org/wiki/Xerostomia" target="_blank">xerostomia</a> (dry mouth). Despite also the lack of any significant link between 'problem behaviours' and edentulousness identified by Kinnear, I'd still like to see whether certain 'challenging behaviours' might be contributory to such a state (<a href="https://questioning-answers.blogspot.com/2013/05/surgery-following-self-injurious-behaviour-autism-intellectual-disability.html" target="_blank">see here</a>) and perhaps one reason why antipsychotics were prescribed in the first place?<br />
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[1] Kinnear D. <i>et al</i>. Prevalence of factors associated with edentulousness (no natural teeth) in adults with intellectual disabilities. <i>J Intellect Disabil Res</i>. 2019 May 6.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-71528696900744191882019-07-13T23:00:00.000+01:002019-07-13T23:00:03.176+01:00"Suicidal spectrum behaviors" and ADHD meta-analysed"<i>Awareness of the association between ADHD</i> [<a href="https://www.nhs.uk/conditions/attention-deficit-hyperactivity-disorder-adhd/" target="_blank">attention-deficit hyperactivity disorder</a>]<i> and SSBs</i> [suicidal spectrum behaviors]<i> should contribute to more effectively prevent SSBs.</i>"<br />
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That was the conclusion reached in <a href="https://www.ncbi.nlm.nih.gov/pubmed/31129238" target="_blank">the study published by Mathilde Septier and colleagues</a> [1] and the results of their "<i>first meta-analysis on the association between ADHD and SSBs taking possible confounders into account.</i>" Their <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3024725/" target="_blank">systematic review and meta-analysis</a> was preregistered (<a href="https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=93003" target="_blank">see here</a>) so we knew it would be coming.<br />
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Starting with nearly 3000 references, the available data was whittled down to just over 50 studies. The data were analysed and boiled down to reveal "<i>a significant association between ADHD and suicidal attempts..., suicidal ideations..., suicidal plans..., and completed suicide.</i>"<br />
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What's more to say? Well such results although stark are not completely unexpected given what has already been discussed on this blog on this topic (<a href="https://questioning-answers.blogspot.com/2017/05/adhd-and-suicide.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2018/04/suicide-risk-in-adhd-based-on-selective-review.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2018/06/adhd-was-risk-factor-for-suicide-attempt.html" target="_blank">see here</a>). They serve to confirm that a diagnosis of ADHD (or even the presentation of subclinical ADHD symptoms?) should really set in motion some preferential screening for suicidal spectrum behaviours and appropriate support offered as and when detected. Minus any sweeping generalisations, such results also invite further inquiry into how certain intervention options indicated for ADHD *might* also affect risk of suicidality in the context of ADHD (<a href="https://questioning-answers.blogspot.com/2017/12/methylphenidate-as-suicide-risk-reducing-agent-adhd-implications-other-labels.html" target="_blank">see here</a>).<br />
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If you need someone to talk to, <a href="https://www.nhs.uk/conditions/suicide/" target="_blank">there are organisations out there</a>...<br />
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[1] Septier M. <i>et al</i>. Association between suicidal spectrum behaviors and Attention-Deficit/Hyperactivity Disorder: A systematic review and meta-analysis. <i>Neurosci Biobehav Rev</i>. 2019 May 23. pii: S0149-7634(18)30941-2.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-90907609202093458262019-07-08T09:14:00.001+01:002019-07-08T09:14:42.041+01:00Asking about "growing up with a sibling with autism"<a href="https://images-assets.nasa.gov/image/KSC-20190504-PH_AWG03_0008/KSC-20190504-PH_AWG03_0008~medium.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="800" data-original-width="532" height="320" src="https://images-assets.nasa.gov/image/KSC-20190504-PH_AWG03_0008/KSC-20190504-PH_AWG03_0008~medium.jpg" width="212" /></a>The <a href="https://www.sciencedirect.com/science/article/pii/S1750946718301545" target="_blank">findings reported by Philippa Moss and colleagues</a> [1] provide the blogging fodder today, and another important research venture into asking siblings about their experiences of growing up with a brother / sister diagnosed with autism. Such work continues an important theme whereby a diagnosis of autism doesn't just impact on the person concerned, but also on significant others around them too (<a href="https://questioning-answers.blogspot.com/2016/01/supporting-siblings-of-children-with-autism.html" target="_blank">see here</a>). It also reiterates that the '<i>nothing about us without us</i>' phrase should really be extended to include siblings as well as parents/primary caregivers and of course, those diagnosed with autism (<a href="https://questioning-answers.blogspot.com/2017/11/who-speaks-for-who-in-relation-to-autism.html" target="_blank">see here</a>)...<br />
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Researchers talked to over 50 adult siblings with a brother and/or sister with autism. They asked them questions about growing up with their sibling and importantly "<i>about their worries for the future.</i>" The results provided an important snapshot into the experiences of siblings. It was a mixed bag in terms of positive and negative experiences; where themes like tolerance and caring were discussed in relation to how their autistic sibling had positively impacted on their lives. The not-so-positive themes included things like "<i>coping with behavioural difficulties (39%) and <a href="https://questioning-answers.blogspot.com/2018/09/parental-separation-in-context-of-autism-adhd.html" target="_blank">disruption to family relationships</a> (32%) or social life (23%).</i>"<br />
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There was another important observation to come from the Moss study too: "<i>The main concerns for the future, expressed by the majority of participants, focussed on problems of finding appropriate care (77%) and the potential emotional impact on the autism siblings of loss of parents.</i>" Such sentiments take us into some difficulty territory as the issue of long-term care comes into the discussion, alongside other issues voiced by parents such as 'why I can never die' (<a href="https://questioning-answers.blogspot.com/2015/09/what-will-happen-to-my-child-when-im-gone.html" target="_blank">see here</a>).<br />
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Given that siblings will probably emerge as the primary caregiver or at least responsible person when it comes to their brother(s) / sister(s) with autism as parents age, one can see the logic in the suggestion from Moss to "<i>involve siblings in care planning and decision-making.</i>" Support for siblings is also required to prepare them for the future and ensure that the sentiments of '<a href="https://questioning-answers.blogspot.com/2017/07/caring-for-carers-continued.html" target="_blank">caring for the carers</a>' extends to them too.<br />
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[1] Moss P. <i>et al</i>. Growing older with autism – The experiences of adult siblings of individuals with autism. <i>Research in Autism Spectrum Disorders</i>. 2019; 63: 42-51.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-3182544376874523352019-07-03T08:35:00.001+01:002019-07-03T08:35:23.134+01:00"being autistic does not always make someone bad at seeing the world from another's viewpoint"<a href="https://images-assets.nasa.gov/image/PIA23125/PIA23125~medium.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="676" data-original-width="800" height="270" src="https://images-assets.nasa.gov/image/PIA23125/PIA23125~medium.jpg" width="320" /></a>The quote titling today's post - "<i>being autistic does not always make someone bad at seeing the world from another's viewpoint</i>" - comes from <a href="https://www.ncbi.nlm.nih.gov/pubmed/31102339" target="_blank">the findings reported by Shisei Tei and colleagues</a> [1].<br />
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Their research paper observing that <i>"more careful attention should be paid to the idea of egocentricity in individuals with ASCs</i> [autism spectrum conditions]" is part of a research mash-up post today that also includes <a href="https://www.frontiersin.org/articles/10.3389/fpsyt.2019.00376/abstract" target="_blank">the findings reported by Hidetsugu Komeda and colleagues</a> [2]. Both papers help to put a 'real-life perspective' on to sweeping generalisations that everyone on the autism spectrum is completely egocentric and lack the capacity to help others.<br />
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The Tei study was initially based on the idea that: "<i>Individuals with autism spectrum conditions (ASCs) often experience difficulty and confusion in acknowledging others' perspectives and arguably exhibit egocentricity.</i>" <a href="https://en.wikipedia.org/wiki/Egocentrism" target="_blank">Egocentrism</a> can mean a few things, but all have in common that self is the be-all-and-end-all, and the interests, beliefs and attitudes of others are of secondary regard. It's a concept that we all engage in to some degree at certain times of development and maturation, and from an evolutionary perspective, probably served (and continues to serve) as an important survival mechanism. But: "<i>whether this egocentricity necessarily results in selfish behavior during social situations remains a matter of debate.</i>" Tei <i>et al</i> examined the possibility of a link between egocentricity and selfish behaviour in the context of autism...<br />
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I'm not totally <i>au fait</i> with all the ins-and-outs of the Tei study techniques - "<i>derived from cognitive psychology and behavioral economics</i>" - but it looks like it was quite a bit to do with response times to a "<i>computerized visuospatial perspective-taking task (VPT)</i>" and the use of a task to measure <a href="https://en.wikipedia.org/wiki/Altruism" target="_blank">altruism</a> ("<i>disinterested and selfless concern for the well-being of others</i>"). Compared with a non-autistic control group, they observed some differences among their tested groups but, and it is an important 'but', "<i>having ASCs does not always exhibit selfish behavior during interpersonal communication.</i>"<br />
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Then we have the findings reported by Komeda <i>et al</i>. The starting point was a sweeping one: "<i>Individuals with Autism Spectrum Disorder (ASD) often lack cognitive empathy, so they experience difficulty in empathizing with others.</i>" Their study was perhaps less complicated than the Tei study as a group of adults with autism and control non-autistic adults were asked to read a number of stories - "<i>(12 stories featured protagonists with characteristics of ASD and the other 12 featured TD protagonists)</i>" - and answer questions about said stories. Questioning included "<i>How did the protagonist feel?</i>" and "<i>Would you help if the protagonist were in trouble?</i>"<br />
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Results again were interesting. So: "<i>individuals with ASD empathize with other people who have ASD and are motivated to help other people with ASD.</i>" Based also on examination of autism spectrum quotient (AQ) scores and when "<i>controlling for <a href="https://en.wikipedia.org/wiki/Alexithymia" target="_blank">alexithymia</a></i>" (marked dysfunction in emotional awareness, social attachment, and interpersonal relating), authors concluded that: "<i>the reason why individuals with ASD are considered to have limited cognitive empathy and helping behaviors could be related to alexithymia and the lack of social skills and attention to detail, which are related to atypical perception.</i>"<br />
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OK, both the Tei and Komeda findings have to be put into some perspective. They don't for example, completely exonerate the social cognition or perspective-taking issues that are seen in autism. They can't do so either, because issues with social interaction for example, are a core facet of a diagnosis of autism. In effect, they define autism. I should also add that the reliance on participants who were very much cognitively able in both the Tei and Komeda studies means that one has to be quite careful of generalising such findings to all quarters of the autism spectrum, particularly the under-studied and under-represented (<a href="https://questioning-answers.blogspot.com/2017/04/on-under-studied-populations-within-autism-spectrum.html" target="_blank">see here</a>) parts.<br />
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But as I mentioned earlier in this post, the combined findings do help to put a 'real-life perspective' on things; specifically that such core issues that have defined autism for many, many years - empathy and perspective-taking - don't always manifest in a uniform fashion across people or situations. They also suggest that various other variables also might serve to promote issues with empathy and perspective-taking in relation to autism, as per mention of alexithymia; something that has been noted before by other independent study (<a href="https://questioning-answers.blogspot.com/2016/08/theory-of-mind-is-not-theory-of-emotion.html" target="_blank">see here</a>).<br />
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[1] Tei S. <i>et al</i>. Egocentric biases and atypical generosity in autistic individuals. <i>Autism Res</i>. 2019 May 17.<br />
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[2] Komeda H. <i>et al</i>. Do individuals with autism spectrum disorders help other people with autism spectrum disorders?: An investigation of empathy and helping behaviors in adults with ASD. <i>Front. Psychiatry</i>. 2019. May 13.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-48100666826559612532019-07-01T09:54:00.001+01:002019-07-01T09:54:04.316+01:00Maternal polycystic ovary syndrome (PCOS) and autism yet again<a href="https://images-assets.nasa.gov/image/iss058e027349/iss058e027349~medium.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="800" data-original-width="533" height="320" src="https://images-assets.nasa.gov/image/iss058e027349/iss058e027349~medium.jpg" width="213" /></a>Another mash-up post for you today as I bring two papers to the blogging table discussing a topic which has already had quite a bit of airtime on this blog: maternal diagnosis of <a href="https://en.wikipedia.org/wiki/Polycystic_ovary_syndrome" target="_blank">polycystic ovary syndrome (PCOS)</a> and risk of offspring diagnosis of autism (<a href="https://questioning-answers.blogspot.com/2018/08/polycystic-ovary-syndrome-pcos-and-autism-continued.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2015/12/maternal-diagnosis-of-pcos-increases-risk-offspring-autism.html" target="_blank">see here</a>). The papers in question are <a href="https://www.nature.com/articles/s41380-019-0398-0" target="_blank">from Maria Katsigianni and colleagues</a> [1] and <a href="https://www.ncbi.nlm.nih.gov/pubmed/30857571" target="_blank">Carolyn Cesta and colleagues</a> [2] and, via different experimental means, both papers suggest that women with PCOS have a significantly greater risk of having a child diagnosed with autism or autism spectrum disorder (ASD).<br />
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PCOS, in case you didn't know, is a fairly common condition according to <a href="https://www.nhs.uk/conditions/polycystic-ovary-syndrome-pcos/" target="_blank">the NHS entry</a>. It's characterised by three main features: irregular periods, the presence of high levels of <a href="https://en.wikipedia.org/wiki/Androgen" target="_blank">androgens</a> (male hormones) and polycystic ovaries ("<i>ovaries become enlarged and contain many fluid-filled sacs (follicles) that surround the eggs</i>"). Mention of (male) sex hormones in relation to PCOS have led quite a few researchers to suspect a connection between PCOS and autism but another important angle to the diagnosis is a link between PCOS and <a href="https://en.wikipedia.org/wiki/Insulin" target="_blank">insulin</a> (the hormone involved in blood sugar control)...<br />
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Anyhow, the Katsigianni paper first. This was a systematic review and meta-analysis of the existing peer-reviewed science on the topic of "<i>whether women with PCOS have increased odds of having a child with ASD, while, secondarily, if these women themselves are at high risk of having the disease.</i>" Now just before anyone gets shirty with the use of the word 'disease', those are the authors words not mine. I fully go with the idea that autism is not a disease. Their 'boiling down the research literature' efforts yielded 10 studies which included over 30,000 children with autism and some 320,000 "<i>non-ASD children.</i>" The results: "<i>Diagnosed PCOS was associated with a 1.66 times increase in the odds of ASD in the offspring</i>" and: "<i>Women with PCOS were 1.78 times more likely to be diagnosed with ASD.</i>" Most data on which those findings were based were deemed to be of 'good quality'.<br />
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Then to the Cesta study. The primary aim was to "<i>measure, in the general population, the association between maternal PCOS and offspring neuropsychiatric disorders where prenatal androgen levels and/or altered androgen function have been implicated in their etiology.</i>" That population was the Sweden, and yet another example of those fantastic Scandinavian population registries being put to good research use. Autism, by the way, wasn't the only label looked at by Cesta <i>et al</i>: "<i>offspring <a href="https://www.nhs.uk/conditions/attention-deficit-hyperactivity-disorder-adhd/" target="_blank">attention-deficit/hyperactivity disorder (ADHD)</a>, autism spectrum disorders (ASD), and <a href="https://www.nhs.uk/conditions/tourettes-syndrome/" target="_blank">Tourette's disorder</a> and <a href="https://www.nhs.uk/conditions/tics/" target="_blank">chronic tic disorders</a> (TD/CTD).</i>"<br />
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Results: based on detecting some 20,000 PCOS-exposed offspring and 200,000 "<i>unrelated PCOS-unexposed offspring</i>" authors concluded that: "<i>PCOS-exposed offspring had increased risk of being diagnosed with ADHD</i><i>, ASD, and TD/CTD compared with unrelated PCOS-unexposed offspring.</i>" Interestingly Cesta observed that the association between maternal PCOS and autism and ADHD was stronger in girl offspring than boy offspring. They then go on to talk about prenatal androgen exposure "<i>leading to ‘hyper-masculine’ behavioral and cognitive traits</i>" in offspring as being one potential biological mechanism.<br />
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What's more to say? Well, despite the whole 'male sex hormone' *link* to autism I'd like to see a lot more investigation looking at biological mechanisms. Going back to the insulin link with PCOS, there is a requirement for further study in light of other findings (<a href="https://questioning-answers.blogspot.com/2018/02/maternal-diabetes-and-offspring-autism-risk-meta-analysis.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2015/08/maternal-obesity-and-offspring-autism-meta-analysed.html" target="_blank">see here</a>). Insofar as implications for policy, well, preferential screening for autism in offspring when mum has a diagnosis of PCOS could be indicated. This adds to the growing number of other circumstances where such preferential screening seems to be indicated.<br />
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Oh, and there could be other areas of potential investigation to consider too (<a href="https://questioning-answers.blogspot.com/2012/05/pcos-dogma-and-autism-with-pinch-of.html" target="_blank">see here</a>)...<br />
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[1] Katsigianni M. <i>et al</i>. Maternal polycystic ovarian syndrome in autism spectrum disorder: a systematic review and meta-analysis. <i>Molecular Psychiatry</i>. 2019. March 13.<br />
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[2] Cesta CE. <i>et al</i>. Maternal polycystic ovary syndrome and risk of neuropsychiatric disorders in offspring: prenatal androgen exposure or genetic confounding? <i>Psychol Med</i>. 2019 Mar 12:1-9.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-32989362156311552712019-06-28T09:17:00.002+01:002019-06-28T09:17:20.749+01:00Roger Moore's eyebrows, ADHD and coeliac disease part 2<a href="https://images-assets.nasa.gov/image/PIA00126/PIA00126~small.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="640" data-original-width="637" height="320" src="https://images-assets.nasa.gov/image/PIA00126/PIA00126~small.jpg" width="318" /></a>Consider this post an extension of some previous blogging chatter (<a href="https://questioning-answers.blogspot.com/2011/10/roger-moores-eyebrows-adhd-and-coeliac.html" target="_blank">see here</a>) about how behaviourally defined diagnostic labels such as <a href="https://www.nhs.uk/conditions/attention-deficit-hyperactivity-disorder-adhd/" target="_blank">attention-deficit hyperactivity disorder (ADHD)</a> seem to rarely exist in some sort of clinical vacuum. Part of that vacuum also potentially encompasses a range of somatic symptoms and/or diagnostic labels.<br />
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The <a href="https://www.ncbi.nlm.nih.gov/pubmed/31050907" target="_blank">findings reported by Vendel Kristensen and colleagues</a> [1] set out to "<i>assess self-reported symptoms of impaired concentration in <a href="https://questioning-answers.blogspot.com/2013/07/coeliac-disease-training-post.html" target="_blank">coeliac disease</a> before and after treatment with <a href="https://www.coeliac.org.uk/gluten-free-diet-and-lifestyle/gf-diet/" target="_blank">gluten-free diet</a>, compared with healthy controls and patient controls.</i>" Coeliac (celiac) disease, in case you didn't know, refers to the archetypal 'gluten can affect biology' condition, where <a href="https://questioning-answers.blogspot.com/2017/12/a-blood-based-diagnostic-test-for-coeliac-disease-minus-gluten.html" target="_blank">a certain genetic predisposition</a> (or two) adds to gluten exposure to start a whole cascade of biological actions that impact on physical health and well being. Alongside things like bowel symptoms, there is an increasing recognition that coeliac disease (CD) also potentially brings with it certain psychological symptoms, particularly when it is not properly treated/managed (<a href="https://questioning-answers.blogspot.com/2015/09/gluten-free-diet-adherence-reduces-depression-coeliac-disease.html" target="_blank">see here</a>).</div>
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Kristensen <i>et al</i> asked some 30 people - "<i>newly diagnosed coeliac patients</i>" - to complete various questionnaires pertinent to the presentation of ADHD type symptoms, depression and anxiety and gut issues. These were compared with responses from those diagnosed with an <a href="https://www.nhs.uk/conditions/inflammatory-bowel-disease/" target="_blank">inflammatory bowel disease (IBD)</a> and controls (healthcare professionals).<br />
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They reported that those diagnosed with CD before implementation of a gluten-free diet had "<i>significantly higher scores than healthy controls</i>" in relation to the presence of self-reported ADHD and depression/anxiety symptoms. Further: "<i>After a gluten-free diet, their scores improved and were not significantly different from healthy controls.</i>" That gluten-free diet by the way, was in place for a minimum of 12 months.</div>
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One has to be careful not to make too many sweeping generalisations from the Kristensen data. The data do not, for example, mean that all cases of ADHD are somehow the product of undiagnosed coeliac disease. Not even close. What do they do (cautiously) suggest, is that preferential screening for something like coeliac disease *might* be a good idea as and when ADHD is diagnosed or significant ADHD-like symptoms present. Such findings also resonate with the idea that certain dietary interventions to manage *some* ADHD could be a research area to consider (<a href="https://questioning-answers.blogspot.com/2017/02/a-few-foods-diet-for-adhd-systematic.html" target="_blank">see here</a>) and bring into play an interesting concept: the gut-brain axis.<br />
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Oh, and in case you were wondering about the 'Roger Moore's eyebrows' bit, well, <a href="https://www.denofgeek.com/uk/movies/roger-moore/50577/roger-moore-s-james-bond-appreciating-the-raised-eyebrow" target="_blank">he was the best James Bond wasn't he</a>?<br />
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[1] Kristensen VA. <i>et al</i>. Attention deficit and hyperactivity disorder symptoms respond to gluten-free diet in patients with coeliac disease. <i>Scand J Gastroenterol</i>. 2019 May 3:1-6.</div>
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Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-63257496428961047742019-06-24T09:24:00.001+01:002019-06-24T09:24:21.529+01:00ADHD and "criminogenic cognitions": is inattention a key issue?<a href="https://images-assets.nasa.gov/image/iss059e088875/iss059e088875~medium.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="449" data-original-width="800" height="179" src="https://images-assets.nasa.gov/image/iss059e088875/iss059e088875~medium.jpg" width="320" /></a>"<i>These results indicate that in community-recruited adults, inattention rather than hyperactivity is related to criminogenic cognitions.</i>"<br />
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That was a key conclusion reached in <a href="https://www.ncbi.nlm.nih.gov/pubmed/31159467" target="_blank">the paper by Paul Engelhardt and colleagues</a> [1] who set out to put some further scientific flesh on the bones of the finding of a "<i>strong link between ADHD</i> [<a href="https://www.nhs.uk/conditions/attention-deficit-hyperactivity-disorder-adhd/" target="_blank">attention-deficit hyperactivity disorder</a>]<i> and criminal behaviour.</i>" They were specifically interested in some of the cognitive processes behind such a correlation, and whether specific facets of ADHD might be more strongly related to criminal behaviour.<br />
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OK, first things first, although there is more than a passing connection between ADHD and risk of incarceration for example (<a href="https://questioning-answers.blogspot.com/2018/09/adhd-in-detention-setting-meta-analysed.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2018/01/quarter-of-prison-inmates-screen-positive-adhd-and-beyond.html" target="_blank">see here</a>) I do need to point out that not every person diagnosed with ADHD is a criminal or would-be criminal. Sweeping generalisations about the effects of behavioural and/or psychiatric labels have done more than enough damage down the years, and I don't want to add to any stigma. That being said, I don't think it's unfair to point out that there is a body of peer-reviewed research evidence out there observing that ADHD certainly seems to increase the risk of contact with law-makers and law enforcers alongside a host of other events (<a href="https://questioning-answers.blogspot.com/2019/03/treating-adhd-better-school-results-less-crime-better-sleep.html" target="_blank">see here</a>).<br />
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Engelhardt <i>et al</i> provided a sample of adults (N=198) aged between 18-65 years with a package of questionnaires designed to assess 'criminal thinking styles' and ADHD-related traits. Questionnaires were of the self-report kind. The results suggested that various variables/items on the ADHD questionnaire and more general demographic information *correlated* with criminogenic cognitions. So: "<i>higher age and being female were negatively related to criminogenic cognitions</i>" indicating that such variables were associated with lower criminogenic cognitions. Further, and as mentioned at the start of this post: "<i>inattention/memory problems were more strongly associated with criminogenic cognitions than was impulsivity/emotional lability.</i>" In total, age, sex/gender and ADHD symptoms accounted for "<i>between half and two-thirds of the variance in criminogenic cognitions.</i>"<br />
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The authors mention how their results differ from other data talking about hyperactivity as being linked to criminality, and whether their use of a non-criminal participant group and focus on criminogenic cognitions rather than criminality might be important. I'd agree that the Engelhardt results are important but require further investigations to be carried out to assess their validity. Having said that, the results as they stand do perhaps offer another avenue for intervention, based on the the idea that managing inattention (if that is possible) *could* be have some really important effects.<br />
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[1] Engelhardt PE. <i>et al</i>. The Relationship between Adult Symptoms of Attention-Deficit/Hyperactivity Disorder and Criminogenic Cognitions.<i> Brain Sci</i>. 2019 Jun 2;9(6). pii: E128.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-45247159624576161502019-06-21T09:55:00.001+01:002019-06-21T09:55:19.860+01:00The rise and rise of CM-AT for autism<a href="https://images-assets.nasa.gov/image/iss059e043283/iss059e043283~medium.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="449" data-original-width="800" height="179" src="https://images-assets.nasa.gov/image/iss059e043283/iss059e043283~medium.jpg" width="320" /></a>Today's post surrounds a poster presentation delivered at INSAR 2019, the (still) premier international autism conference, albeit <a href="https://www.spectrumnews.org/news/tensions-ride-high-despite-reshuffle-autism-science-meeting/" target="_blank">not without its battles</a>. The <a href="https://insar.confex.com/insar/2019/webprogram/Paper30801.html" target="_blank">poster was delivered by Heil and colleagues</a> [1] and talks about a compound / preparation that has been discussed a few years back on this blog: CM-AT (<a href="https://questioning-answers.blogspot.com/2012/06/just-wondering-about-cm-at-and-autism.html" target="_blank">see here</a>).<br />
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CM-AT is described as a "<i>pancreatic enzyme preparation</i>" with <a href="https://en.wikipedia.org/wiki/Chymotrypsin" target="_blank">chymotrypsin</a> - a digestive enzyme - seemingly placed quite prominently in its list of ingredients. CM-AT is, from what I understand, something that is still going through the research processes with regards to its use in the context of autism. Heil and colleagues presented data on part of that research agenda, specifically pertinent to ascertaining "<i>whether or not behavior (e.g., symptoms of irritability, hyperactivity) in preschoolers with autism could be improved with CM-AT.</i>"<br />
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Bearing in mind a conference poster presentation is not necessarily the same as a published peer-reviewed research article, the Heil data was based on the use of a "<i>randomized, placebo-controlled, 12-week clinical trial</i>" methodology where 92 children, aged between 3-5 years, diagnosed with an autism spectrum disorder (ASD) received CM-AT "<i>as granules sprinkled on food</i>" and almost a hundred boys with ASD received a placebo "<i>which consisted of visually identical inert sprinkles.</i>" The 'Irritability' scale of the <a href="https://www.ncbi.nlm.nih.gov/pubmed/3993694" target="_blank">Aberrant Behavior Checklist (ABC)</a> was the primary outcome measure.<br />
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Results: "<i>children receiving CM-AT (relative to those receiving placebo) demonstrated significant reductions in Irritability... Hyperactivity... Inappropriate Speech... over the 12 weeks of the trial.</i>" Researchers further reported that those children with higher levels of irritability at baseline tended to show a greater positive response than when the participant sample as a whole was analysed.<br />
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I think you can perhaps see why these results - preliminary as they are - are worthy blogging material. Irritability, perhaps listed as a '<a href="https://questioning-answers.blogspot.com/2018/01/challenging-behaviour-and-autism-how-do-parents-manage-it.html" target="_blank">challenging behaviour</a>' in the context of autism is something that many, many people would love to be able to effectively tackle; if not just because of the impact it can have on those with autism and those around them who have to 'cope' with such behaviours. Indeed, given the other options for managing such behaviour such as the antipsychotic risperidone (<a href="https://www.spectrumnews.org/news/risperidone-use-in-children-with-autism-carries-heavy-risks/" target="_blank">see here</a>) and the issues which that drug and its similars can bring (<a href="https://questioning-answers.blogspot.com/2015/01/nac-risperidone-decreased-irritability-in-autism.html" target="_blank">see here</a>), the idea that there may be other, less side-effect heavy options (<a href="https://questioning-answers.blogspot.com/2018/11/vitamin-d-and-omega-3-reduced-irritability-autism.html" target="_blank">see here</a>) is definitely something to consider.<br />
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I'm hopeful that soon, very soon, I can talk more about CM-AT in the context of irritability and beyond in relation to autism...<br />
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[1] Heil MF. <i>et al</i>. Pancreatic Replacement Therapy with CM-at Is Associated with Reduction in Maladaptive Behaviors in Preschoolers with Autism. INSAR 2019.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-14663332612417849242019-06-19T08:48:00.001+01:002019-06-19T08:48:01.611+01:00Mindfulness for ADHD systematically reviewed<a href="https://images-assets.nasa.gov/image/iss059e027932/iss059e027932~medium.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="533" data-original-width="800" height="213" src="https://images-assets.nasa.gov/image/iss059e027932/iss059e027932~medium.jpg" width="320" /></a>"<i>According to presented descriptive results, all the studies (100%) showed improvement of ADHD</i> [<a href="https://www.nhs.uk/conditions/attention-deficit-hyperactivity-disorder-adhd/" target="_blank">attention-deficit hyperactivity disorder</a>]<i> symptoms.</i>"<br />
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That was the standout sentence derived from <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6476147/" target="_blank">the findings reported by Hélène Poissant and colleagues</a> [1] who looked at "<i>the available literature concerning MBIs </i>[mindfulness-based interventions] <i>in adult participants with ADHD.</i>" <a href="https://www.nhs.uk/conditions/stress-anxiety-depression/mindfulness/" target="_blank">Mindfulness</a> by the way, is described as a way of "<i>reconnecting with our bodies and the sensations they experience</i>" with a specific focus on "<i>an awareness of our thoughts and feelings as they happen moment to moment.</i>" I'm no expert on mindfulness or mindfulness-based interventions but, from what I gather, the core of such intervention(s) is based around "<i>somatically focused meditative techniques (body scan, sitting meditation, and mindful yoga) that are thought to help participants cultivate nonjudgmental, mindful awareness of present-moment experience.</i>" 'Focusing in on the present' seems to be the phrase that springs to mind.<br />
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Poissant<i> et al</i> examined the relevant peer-reviewed science on the application of the MBIs to ADHD upto June 2018. They specifically focused on adults with ADHD, and were able to track down "<i>13 studies conducted with 753 adults (mean age of 35.1 years)</i>" for inclusion in their <a href="https://en.wikipedia.org/wiki/Systematic_review" target="_blank">systematic review</a>. They observed that: "<i>All the studies (100%) showed improvement of ADHD symptoms following an MBI.</i>" They also mentioned that: "<i>mindfulness meditation training improves some aspects of executive function and emotion dysregulation</i>" as per the findings of some of those studies.<br />
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Despite the '100% of studies showing improvement in ADHD symptoms' sentiments, I'm not falling hook, line and sinker for the value of MBIs in relation to ADHD. The main reason is the high risk of bias identified in quite a few of the studies reviewed by Poissant, related to things like performance bias ("<i>blinding of participants and of personnel</i>") and selection bias ("<i>allocation concealment</i>" and "<i>selection bias</i>"). One could argue that the examination of something like MBIs under research conditions is never going to be perfect. Unlike scientific investigation of a medicine, where a placebo can be formulated to look, smell and taste the same, it would be difficult to come up with something to approximate MBI and indeed, approximate what the 'active ingredient' of mindfulness actually is. Similar issues have been talked about on other occasions on this blog (<a href="https://questioning-answers.blogspot.com/2019/02/yoga-therapy-and-autism-ok-but-better-trials-required.html" target="_blank">see here</a>).<br />
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That all being said, there is something appealing about MBIs both in terms of effect and also the fact that it can be learned by pretty much anyone, is cost-free and probably about as side-effect free as one could get. If such a simple technique helps with any one of the symptoms of ADHD and improves quality of life for those with ADHD, it's got to be something to be considered alongside the myriad of other possible interventions (<a href="https://questioning-answers.blogspot.com/2015/12/cochrane-does-methylphenidate-for-adhd.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2017/10/managing-childhood-adhd-with-exercise.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2017/02/a-few-foods-diet-for-adhd-systematic.html" target="_blank">see here</a>) that *might* offset the risks that follow a diagnosis of ADHD (<a href="https://questioning-answers.blogspot.com/2019/03/treating-adhd-better-school-results-less-crime-better-sleep.html" target="_blank">see here</a>).<br />
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Oh, and it appears that <a href="https://www.ncbi.nlm.nih.gov/pubmed/31169722" target="_blank">mindfulness and ADHD is a topic in the ascendancy</a> [2]...<br />
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[1] Poissant H. <i>et al</i>. Behavioral and Cognitive Impacts of Mindfulness-Based Interventions on Adults with Attention-Deficit Hyperactivity Disorder: A Systematic Review. <i>Behav Neurol</i>. 2019;2019:5682050.<br />
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[2] Xue J. <i>et al</i>. A meta-analytic investigation of the impact of mindfulness-based interventions on ADHD symptoms. <i>Medicine (Baltimore). </i>2019 Jun;98(23):e15957.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-13288236977380858102019-06-17T09:21:00.001+01:002019-06-17T09:21:32.404+01:00Following ADHD long-term: "a persistence rate of 27.8%"<a href="https://images-assets.nasa.gov/image/iss047e001114/iss047e001114~medium.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="532" data-original-width="800" height="212" src="https://images-assets.nasa.gov/image/iss047e001114/iss047e001114~medium.jpg" width="320" /></a>Studies such as <a href="https://www.ncbi.nlm.nih.gov/pubmed/31087826" target="_blank">the one published by Michel Lecendreux and colleagues</a> [1] always catch my attention. Research that follows a group of people over a period of years makes for interesting reading; not least because one gets a flavour for what *could* happen when such findings are applied to a larger population.<br />
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The Lecendreux findings focused on a few important issues pertinent to a diagnosis of <a href="https://www.nhs.uk/conditions/attention-deficit-hyperactivity-disorder-adhd/" target="_blank">attention-deficit hyperactivity disorder (ADHD)</a> specifically related to (a) the persistence of ADHD, and (b) the idea that signs and symptoms of ADHD not meeting the thresholds for a diagnosis of ADHD might be rather important. Indeed, that they may merit "<i>a subthreshold diagnostic category</i>" of their own.<br />
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So, based on a starting participant sample of just over a thousand families including a child in the "<i>6-12 years age range", interviews were conducted covering various aspects of ADHD and beyond: "symptoms of ADHD, conduct disorder, and <a href="https://www.nhs.uk/news/pregnancy-and-child/new-guidelines-on-child-antisocial-behaviour/" target="_blank">oppositional defiant disorder</a> as well as family living situation, school performance, sleep disturbance, eating habits, <a href="https://www.nature.com/articles/s41598-017-19096-x.pdf" target="_blank">use of supplemental iron</a>, and history of ADHD treatment.</i>" Approaching half of the original sample (492 / 1012) were followed up some 9 years later where "<i>the persistence of ADHD and its impairments and the emergence of new conditions were assessed.</i>"<br />
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Results: "<i>At follow-up, 16.7% of the children diagnosed with ADHD at baseline met full criteria for ADHD and 11.1% met criteria for subthreshold ADHD, yielding a persistence rate of 27.8%.</i>" Diagnosis of ADHD was, by the way, based on <a href="https://images.pearsonclinical.com/images/assets/basc-3/basc3resources/DSM5_DiagnosticCriteria_ADHD.pdf" target="_blank">DSM-5 criteria</a> (<a href="https://questioning-answers.blogspot.com/2014/08/adhd-in-dsm-5-what-did-you-think-would-happen.html" target="_blank">see here</a>). That figure of 27.8% in terms of ADHD persistence from childhood to early adulthood is potentially an important one. It tells us that for a majority of children diagnosed with ADHD in childhood, their symptoms of inattention, hyperactivity and impulsivity will reduce to such a degree that they are no longer considered clinically significant or at least not reaching thresholds for a diagnosis of ADHD. Whether such a reduction in symptoms is through processes such as maturation or the timely implementation of intervention/management strategies needs quite a bit more work. Whether also ADHD potentially 'morphs' into something else as people age also needs further exploration (<a href="https://questioning-answers.blogspot.com/2015/10/adhd-primes-for-psychosis-andor-schizophrenia.html" target="_blank">see here</a>).<br />
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Another important detail was also mentioned by Lecendreux <i>et al</i>: "<i>Among children not diagnosed with ADHD at baseline, 1.1% met criteria for ADHD at follow-up.</i>" Such a figure is important <a href="https://www.ncbi.nlm.nih.gov/pubmed/29683192" target="_blank">in relation to the concept of adult-onset ADHD</a> [2] and the question of whether ADHD is a diagnosis with foundations always rooted in infancy. The Lecendreux findings suggest that for some people, this might not be the case and opens the door to possible talk about acquired ADHD for examples. This also sounds very familiar (<a href="https://questioning-answers.blogspot.com/2016/04/developmental-regression-in-autism-affects-screening-results.html" target="_blank">see here</a>).<br />
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Insofar as the issue of a possible 'subthreshold diagnostic category' for ADHD, I find myself agreeing with the "<i>dimensional conceptualization</i>" mentioned by the authors. Several other conditions / states / diagnoses have recognised 'lite versions' of the label. In autism for example, one might see this as <a href="https://questioning-answers.blogspot.com/2014/12/social-communication-disorder-scd-reviewed.html" target="_blank">social communication disorder (SCD)</a> or mention of <a href="https://questioning-answers.blogspot.com/2012/03/on-broader-autism-phenotype.html" target="_blank">the broader autism phenotype (BAP)</a>. I'm even minded to place the label known as <a href="https://www.autism.org.uk/about/what-is/pda.aspx" target="_blank">pathological demand avoidance (PDA)</a> in a similar bracket given recent opinions (<a href="https://questioning-answers.blogspot.com/2018/04/evidence-does-not-support-validity-of-pda-stand-alone-condition.html" target="_blank">see here</a>). Such chatter about 'lite' does not and should not downplay the effects of such sub-threshold labels. It merely acknowledges that there may be a wider spectrum of issues / difficulties experienced outside of the receipt of a core diagnosis.<br />
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So it should perhaps be the same with ADHD too, given what is beginning to emerge on the long-term 'effects' that a diagnosis of ADHD and subthreshold ADHD might bring (<a href="https://questioning-answers.blogspot.com/2019/03/treating-adhd-better-school-results-less-crime-better-sleep.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2019/05/managing-adhd-pharmacotherapy-use-and-quality-of-life.html" target="_blank">see here</a>).<br />
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[1] Lecendreux M. <i>et al</i>. A 9-Year Follow-Up of Attention-Deficit/Hyperactivity Disorder in a Population Sample. <i>J Clin Psychiatry</i>. 2019 May 7;80(3). pii: 18m12642.<br />
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[2] Cooper M. <i>et al</i>. Investigating late-onset ADHD: a population cohort investigation. <i>J Child Psychol Psychiatry</i>. 2018 Oct;59(10):1105-1113.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-59292620647099676672019-06-14T10:02:00.001+01:002019-06-14T10:02:46.128+01:00Nighttime body movements and autism<a href="https://images-assets.nasa.gov/image/iss059e059211/iss059e059211~medium.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="533" data-original-width="800" height="213" src="https://images-assets.nasa.gov/image/iss059e059211/iss059e059211~medium.jpg" width="320" /></a>I was rather interested in <a href="https://www.nature.com/articles/s41598-019-43397-y" target="_blank">the findings reported by Nobushige Naito and colleagues</a> [1] talking about how atypical body movements during the night seemed to be more frequently observed in children diagnosed with an autism spectrum disorder (ASD) compared to not-autism controls. Interested because, sleep is a long-running 'issue' in relation to autism (<a href="https://questioning-answers.blogspot.com/2015/03/objective-measures-of-sleep-in-autism.html" target="_blank">see here</a>) and because, researchers relied on the use of <a href="https://en.wikipedia.org/wiki/Actigraphy" target="_blank">actigraphy</a> in their study: "<i>a movement-based index measured by an accelerometer</i>" rather than just second-hand observational questioning.<br />
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So: "<i>Seventeen TD </i>[typically developing] <i>children and 17 children with ASD participated in this study (5 to 8 years old).</i>" Importantly (<a href="https://questioning-answers.blogspot.com/2016/08/76-of-youths-with-autism-meet-adhd-more-like-59.html" target="_blank">see here</a>) we are told that: "<i>Considering the frequent co-occurrence of ASD and ADHD </i>[<a href="https://www.nhs.uk/conditions/attention-deficit-hyperactivity-disorder-adhd/" target="_blank">attention-deficit hyperactivity disorder</a>] <i>symptoms, we did not exclude ASD patients with ADHD </i><i>symptoms.</i>" Authors relied on data from a waistband accelerometer worn by participants over at least 3 nights. Using a waistband was seen as preferable to the more typical wristband. Data was collected and analysed. It included something called a movement index (MI): "<i>the ratio of the body movement period in 20 minutes was calculated continuously for 9 hours using the sliding window method.</i>"<br />
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Results: "<i>a higher rate of body movement 2 to 3 hours after the first onset of body stillness was more prominent in children with ASD than in TD children.</i>" Importantly authors also mention how the objective data provided by the waistband accelerometer showed a different "<i>time course of body movements during night in young children with ASD</i>" despite parents/carers reporting no "<i>apparent</i>" problems with sleeping. They also talk some of the differences in body movements seen in those children with ASD potentially *related* to some awake behaviours - "<i>a lower social ability and more frequent maladaptive behaviour.</i>"<br />
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The Naito results represent a good start at looking at these important behaviours. I'm a little bit hesitant to go all-in with the suggestion from the authors that "<i>atypical nocturnal body movement could be an ASD state and trait marker in young children with ASD</i>" but can see the importance of further investigations in this area.<br />
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[1] Naito N. <i>et al</i>. Atypical body movements during night in young children with autism spectrum disorder: a pilot study. <i>Sci Rep</i>. 2019 May 6;9(1):6999.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-64515619138395860612019-06-12T09:16:00.001+01:002019-06-12T09:16:10.687+01:00Childhood dietary patterns and ADHD?<a href="https://images-assets.nasa.gov/image/iss059e008252/iss059e008252~medium.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="800" data-original-width="449" height="320" src="https://images-assets.nasa.gov/image/iss059e008252/iss059e008252~medium.jpg" width="179" /></a>The findings of the systematic review and meta-analysis <a href="https://www.sciencedirect.com/science/article/pii/S0165032718329720" target="_blank">published by Bianca Del-Ponte and colleagues</a> [1] provide the blogging fodder today, and the suggestion that: "<i>a diet high in refined sugar and saturated fat can increase the risk, whereas a healthy diet, characterized by high consumption of fruits and vegetables, would protect against ADHD</i> [<a href="https://www.nhs.uk/conditions/attention-deficit-hyperactivity-disorder-adhd/" target="_blank">attention-deficit hyperactivity disorder</a>]<i> or hyperactivity.</i>"<br />
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The starting point: "<i>The diet during childhood has been investigated as a factor potentially involved in the ADHD etiology.</i>" Yes it has, and Del-Ponte <i>et al </i>managed to find 14 studies looking at this issue published in the peer-reviewed literature. The data were boiled down and results obtained suggesting that "<i>healthy dietary patterns were protective against ADHD (<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2938757/" target="_blank">OR</a>: 0.65; 95% <a href="https://en.wikipedia.org/wiki/Confidence_interval" target="_blank">CI</a>: 044 – 0.97), while unhealthy dietary patterns were found as risk to ADHD (OR: 1.41; 95% CI: 1.15–1.74).</i>"<br />
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The authors admit that the science upon which they made their observation is "<i>weak</i>" insofar as cause and effect not being proved. This is an important point (<a href="https://edition.cnn.com/2019/04/18/health/sugar-hyper-myth-food-drayer/index.html" target="_blank">see here</a>) that follows other research in this area too (<a href="https://questioning-answers.blogspot.com/2016/08/a-prenatal-unhealthy-diet-and-offspring-adhd.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2017/02/a-few-foods-diet-for-adhd-systematic.html" target="_blank">see here</a>) together with an understanding that many different variables *might* influence the risk of something like ADHD as a diagnosis or in behaviour (<a href="https://questioning-answers.blogspot.com/2019/03/nicotine-exposure-and-offspring-adhd.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2019/02/maternal-prenatal-acetaminophen-use-and-risk-offspring-adhd.html" target="_blank">see here</a> for examples).<br />
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Still, if there is even the remotest possibility that diet might be something to consider in respect of ADHD, adding it to the intervention arsenal that already exists (<a href="https://questioning-answers.blogspot.com/2019/03/treating-adhd-better-school-results-less-crime-better-sleep.html" target="_blank">see here</a>) can only be a good thing...<br />
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[1] Del-Ponte B. <i>et al</i>. Dietary patterns and attention deficit/hyperactivity disorder (ADHD): A systematic review and meta-analysis. <i>Journal of Affective Disorders</i>. 2019; 252: 160-173.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-87266750918085823492019-06-11T09:50:00.001+01:002019-06-11T09:50:02.392+01:00SHANK3, gut issues and (mouse) autism continued <div class="separator" style="clear: both; text-align: center;">
<a href="https://images-assets.nasa.gov/image/KSC-20190504-PH_AWG06_0009/KSC-20190504-PH_AWG06_0009~medium.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="532" data-original-width="800" height="212" src="https://images-assets.nasa.gov/image/KSC-20190504-PH_AWG06_0009/KSC-20190504-PH_AWG06_0009~medium.jpg" width="320" /></a></div>
"<i>We conclude that apart from its well-known role in the CNS</i> [central nervous system]<i>, <a href="https://en.wikipedia.org/wiki/SHANK3" target="_blank">SHANK3</a> plays a specific role in the GI</i> [gastrointestinal]<i> tract that may contribute to the ASD</i> [autism spectrum disorder]<i> phenotype by <a href="https://en.wiktionary.org/wiki/extracerebral" target="_blank">extracerebral</a> mechanisms.</i>"<br />
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So said <a href="https://www.mdpi.com/1422-0067/20/9/2134/htm" target="_blank">the findings reported by Ann Katrin Sauer and colleagues</a> [1], and yet more evidence that issues with SHANK3 mentioned in relation to 'some' autism, may well (partly) explain much more than just behaviour (<a href="https://questioning-answers.blogspot.com/2019/02/zebrafish-gut-motility-shank3-and-autism.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2017/10/frankly-mr-shankly-shank3-and-intestinal-barrier-autism.html" target="_blank">see here</a>).<br />
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The Sauer study was yet another mouse study. They specifically focused on the "<i>Shank3αβ KO</i>" mouse, where KO means knock-out, referring to the engineering of this mouse strain to mimic issues with the functioning and availability of SHANK3, "<i>a known scaffolding protein of the postsynaptic density (PSD) of glutamatergic excitatory synapses.</i>" Said knock-out mice have been "<i>reported to display ASD-like behavior with abnormal ultrasonic vocalization, repetitive self-grooming, and reduced interest in novel mice.</i>" I say this being careful to reiterate that we're talking about a mouse not human beings (<a href="https://questioning-answers.blogspot.com/2017/03/logical-fallacies-in-animal-model-research.html" target="_blank">see here</a>).<br />
<br />
On the basis of the observation that SHANK3 is expressed in the gut as well as brain and that GI issues are no stranger to autism (<a href="https://questioning-answers.blogspot.com/2018/01/bowel-issues-over-represented-in-autism-perhaps-linked-behaviour.html" target="_blank">see here</a>), researchers set about looking at how SHANK3 issues might also manifest as gut issues, and what this *could* mean for some autism. They observed some interesting things:<br />
<br />
<ul>
<li>"<i>analysis of the GI tract of Shank3αβ KO mice revealed significantly altered gut morphology</i>" which included, among other things, increased levels of ZONULIN1 ("<i>a modulator of tight junctions and alterations</i>"). Zonulin is something that I'm particularly interested in on this blog (<a href="https://questioning-answers.blogspot.com/2017/05/welcoming-zonulin-into-autism-research.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2019/02/serum-zonulin-testing-via-elisa-be-very-careful.html" target="_blank">see here</a>) on the basis of its *connection* to intestinal barrier function and the misnomer that is 'leaky gut' (<a href="https://questioning-answers.blogspot.com/2013/08/leaky-gut-and-autism-story-so-far.html" target="_blank">see here</a>).</li>
<li>"<i>The Microbiome of Shank3 KO Mice Is Altered.</i>" Bearing in mind the increasing importance of the gut microbiome to autism (<a href="https://questioning-answers.blogspot.com/2019/02/the-gut-microbiome-and-autism-so-far-continued.html" target="_blank">see here</a>), researchers reported some interesting difference between "<i>Shank3αβ KO mice</i>" and controls with regards to several different bacterial species. </li>
<li>Researchers describe how those gut morphology and gut bacterial differences seemed to be linked to alterations in the "<i>expression of inflammatory markers</i>" too as they talked about "<i>signs of increased immune activation in the periphery and the brain.</i>" A familiar cytokine is mentioned - <a href="https://questioning-answers.blogspot.com/2012/03/clean-up-on-il-6-please.html" target="_blank">IL-6</a> - and quite a few avenues for further investigation.</li>
</ul>
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The net result of all this work is to say that, yes, the SHANK3 mouse model *potentially* mimicking some of the behavioural signs and symptoms of autism does also appear to show some significant gut-related issues. No, this does not directly translate into issues for 'all human autism', but it does add further credence to the idea that the gut-brain axis is likely important to at least 'some autism'. Where also SHANK3 issues are identified as coinciding with 'human autism', one might also entertain the idea that gut issues should be screened and treated/managed. And there might be lots of ways to manage them (<a href="https://questioning-answers.blogspot.com/2019/03/the-gastrointestinal-gi-effects-of-gluten-casein-free-diet-autism.html" target="_blank">see here</a> for one example)...</div>
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[1] Sauer AK. <i>et al</i>. Altered Intestinal Morphology and Microbiota Composition in the Autism Spectrum Disorders Associated SHANK3 Mouse Model. <i>Int. J. Mol. Sci.</i> 2019; 20: 2134.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-49647606160640295032019-06-10T10:48:00.001+01:002019-06-10T10:48:04.894+01:00Constipation and autism is not an uncommon combination<a href="https://images-assets.nasa.gov/image/GRC-1988-C-04806/GRC-1988-C-04806~medium.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="638" data-original-width="800" height="255" src="https://images-assets.nasa.gov/image/GRC-1988-C-04806/GRC-1988-C-04806~medium.jpg" width="320" /></a>For those who know (or think they know) anything about autism, the title of this post - "<i><a href="https://www.nhs.uk/conditions/constipation/" target="_blank">Constipation</a> and autism is not an uncommon combination</i>" - is unlikely to be new or novel. Indeed, I've talked again and again and again about how <a href="https://en.wikipedia.org/wiki/Functional_gastrointestinal_disorder#Classification" target="_blank">functional gastrointestinal (GI) symptoms</a> are very well over-represented when it comes to a diagnosis of autism (<a href="https://questioning-answers.blogspot.com/2017/09/guess-what-gastrointestinal-symptoms-prevalent-autism.html" target="_blank">see here</a> for example).<br />
<br />
Enter then two further recent articles - <a href="https://www.frontiersin.org/articles/10.3389/fpsyt.2019.00194/full" target="_blank">one from Bradley Ferguson and colleagues</a> [1] and <a href="https://www.frontiersin.org/articles/10.3389/fpsyt.2019.00179/full" target="_blank">one from María José Penzol and colleagues</a> [2] - which further add to the evidence base in this area. Both papers are open-access, so please peruse at your leisure. The long-and-short of them can be quickly summarised:<br />
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<br />
<ul>
<li>The Ferguson paper set out to examine the "<i>relationships among GI </i>[gastrointestinal] <i>problems, problem behaviors, and internalizing symptoms in a sample of 340 children and adolescents with ASD</i> [autism spectrum disorder]<i>.</i>" Caregivers/parents reported on their child's GI issues. Bottom line: "<i>The majority of the sample experienced constipation (65%).</i>" Various other functional GI issues were also reported.</li>
<li>The Penzol paper "<i>reviewed the medical records of all patients admitted to the Comprehensive Medical Program for ASD (AMITEA) at Gregorio Marañón University General Hospital from January 2012 to December 2015.</i>" They analysed records for nearly 850 patients diagnosed with ASD. Their data were collected and transcribed by physicians including the "<i>presence of fGID</i> [functional gastrointestinal disorders]<i> (gastrointestinal reflux, aerophagia, functional diarrhea, functional constipation, functional abdominal pain, cyclic vomiting).</i>" Bottom line: "<i>At least one fGID was present in 30.5% of patients, constipation being the most prevalent (47.4% of fGID patients).</i>" They also observed that GI issues *seemed* to be related to the presence of <a href="https://en.wikipedia.org/wiki/Intellectual_disability" target="_blank">intellectual (learning) disability</a>, sleep issues and behavioural problems. These are not novel associations (<a href="https://questioning-answers.blogspot.com/2018/07/shocker-alert-gut-problems-in-autism-impact-sleep-again.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2018/01/bowel-issues-over-represented-in-autism-perhaps-linked-behaviour.html" target="_blank">see here</a>).</li>
</ul>
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Of course there are strengths and weaknesses to those studies. No-one would dispute the fact that these are not perfect data. But, set within the context of a mountain of peer-reviewed science suggesting that something like constipation is over-represented when it comes to a diagnosis of autism, the collected results add a further layer of evidence. They also ask the question 'why', why oh why have we not got a greater handle on how to successfully treat/manage such symptoms?<br />
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[1] Ferguson BJ. <i>et al.</i> The Relationship Among Gastrointestinal Symptoms, Problem Behaviors, and Internalizing Symptoms in Children and Adolescents With Autism Spectrum Disorder.<i> Front Psychiatry.</i> 2019 Apr 9;10:194.<br />
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[2] Penzol MJ. <i>et al.</i> Functional Gastrointestinal Disease in Autism Spectrum Disorder: A Retrospective Descriptive Study in a Clinical Sample. <i>Front Psychiatry</i>. 2019 Apr 10;10:179.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-1251143741344119202019-06-07T09:55:00.001+01:002019-06-07T09:55:19.104+01:00Preventing, yes preventing, elopement in kids with autism<a href="https://images-assets.nasa.gov/image/KSC-20190415-PH_KLS01_0037/KSC-20190415-PH_KLS01_0037~medium.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="533" data-original-width="800" height="213" src="https://images-assets.nasa.gov/image/KSC-20190415-PH_KLS01_0037/KSC-20190415-PH_KLS01_0037~medium.jpg" width="320" /></a>I know the word 'prevention' is a dirty word for some in relation to some aspects of autism. When however 'prevention' is used in the context of <a href="https://www.cdc.gov/ncbddd/disabilityandsafety/wandering.html" target="_blank">elopement or wandering</a> and autism, the word(s) take on an altogether different meaning...<br />
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The word prevention is used in <a href="https://www.ncbi.nlm.nih.gov/pubmed/31033248" target="_blank">the study findings reported by Silvia Pereira‐Smith and colleagues</a> [1] and their focus on "<i>the use of preventive measures that target elopement</i>" in relation to autism. They add that "<i>elopement can lead to dire consequences.</i>" Seldom have truer words been spoken in relation to this issue with autism in mind (<a href="https://questioning-answers.blogspot.com/2018/01/on-unintentional-drowning-deaths-in-children-autism.html" target="_blank">see here</a>).<br />
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For those of you who might know too much about this topic, wandering is an important issue in both autism research and practice (<a href="https://questioning-answers.blogspot.com/2018/08/even-more-on-wandering-and-autism.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2016/05/wandering-and-autism-continued-yet-again.html" target="_blank">see here</a>). Figures suggest that around 1 in 4 children diagnosed with an autism spectrum disorder (ASD) will consistently wander from home or school or other place, but this issue does not seem to be as widely talked about or parents/caregivers consistently given as much information about it as they should.<br />
<br />
Pereira-Smith and colleagues asked nearly 400 parent-caregivers of children and young people diagnosed with an autism spectrum disorder (ASD) about their [child's] experience of wandering/elopement. They asked questions about who did it, "<i>preventive measure use, and sociodemographic characteristics</i>" of their cohort.<br />
<br />
Results: "<i>Two hundred and sixty-seven caregivers (68%) reported elopement by their child.</i>" That figure is way over the 1 in 4 estimate that has been previously banded around. Researchers also found that wandering was not confined to any one "<i>sociodemographic characteristics, nor with any specific comorbidity or neurobehavioral medication.</i>" Kids and young people across the autism spectrum wandered. That being said: "<i>Children with limited communication skills were more likely to have a history of elopement.</i>" As for that word 'prevention', most families used "<i>lock(s) at top of doors</i>" with other families utilising "<i>handicap permits, signs/visual markers, or tracking devices</i>" albeit to a lesser degree than locks. Researchers conclude that "<i>use of specific preventive measures can help guide recommendations for this dangerous comorbid symptom, and provide information needed for future studies to assess the efficacy of various preventive measures.</i>" Who would argue with that?<br />
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Oh, and just to let you know that there are some autism organisations who have really taken a lead in this area (<a href="http://nationalautismassociation.org/resources/awaare-wandering/" target="_blank">see here</a>)...<br />
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[1] Pereira-Smith S. <i>et al</i>. Preventing elopement in children with autism spectrum disorder. <i>Autism Res</i>. 2019 Apr 29.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-92211904913895943152019-06-06T09:20:00.001+01:002019-06-06T09:20:06.595+01:00That 'gut bacteria transplant provokes autistic signs in mice' paper is not perfect but...<a href="https://images-assets.nasa.gov/image/PIA23126/PIA23126~medium.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="346" data-original-width="800" height="138" src="https://images-assets.nasa.gov/image/PIA23126/PIA23126~medium.jpg" width="320" /></a>The <a href="https://www.cell.com/cell/fulltext/S0092-8674(19)30502-1" target="_blank">paper by Gil Sharon and colleagues</a> [1] has certainly created headlines and discussion in equal measure (<a href="https://www.theguardian.com/society/2019/may/30/autism-symptoms-replicated-mice-after-faecal-transplants" target="_blank">see here</a> and <a href="https://www.spectrumnews.org/news/gut-microbes-autistic-children-may-alter-behavior-mice/" target="_blank">see here</a> and <a href="https://blogs.sciencemag.org/pipeline/archives/2019/05/31/autism-mouse-models-for-the-microbiome" target="_blank">see here</a> and <a href="https://pubpeer.com/publications/B521D325772244D8F656F1ED193ACA" target="_blank">see here</a>). Concluding that: "<i>Mice harboring human ASD</i> [autism spectrum disorder]<i>, but not TD</i> [typically developing]<i>, microbiomes exhibit ASD-like behaviors</i>", the idea of a gut-brain connection in relation to autism (<a href="https://questioning-answers.blogspot.com/2011/07/brain-and-gut-in-autism-historical.html" target="_blank">see here</a>) potentially gains some research traction.<br />
<br />
The Sharon study involved transplanting gut bacteria - the <a href="https://en.wikipedia.org/wiki/Gut_flora" target="_blank">gut microbiome</a> - from a small number of participants - "<i>from 5 control volunteers and 11 patients diagnosed with autism spectrum disorder</i>" - into mice lacking a microbiome and breeding said mice. They then analysed the behaviour and other biological parameters of those offspring mice according to whether their mother mice had received a transplant from controls or participants with various 'degrees' of autism. They also looked at 'metabolite profiles' based on "<i>analyses of colon contents from oTD</i> [offspring typically developing]<i> and oASD </i>[offspring autism spectrum disorder] <i>mice.</i>"<br />
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Results: "<i>colonization with ASD microbiota is sufficient to induce hallmark autistic behaviors.</i>" By 'hallmark autistic behaviors' researchers observed that said mice showed "<i>increased repetitive behavior, decreased locomotion, and decreased communication</i>... <i>compared to mice colonized with samples from TD controls (oTD), as tested by marble burying (MB), open-field testing (OFT), and ultrasonic vocalization (USV), respectively.</i>" Researchers also observed specific differences across the mouse group gut microbiomes, some of which were consistent with that noted in other independent studies.<br />
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Also: "<i>Twenty-seven out of 313 detected metabolites were significantly different in the colon contents of oASD mice, compared to oTD mice.</i>" They specifically focused in on two metabolites - <a href="https://en.wikipedia.org/wiki/Taurine" target="_blank">taurine</a> and <a href="https://pubchem.ncbi.nlm.nih.gov/compound/5-Aminovaleric-acid" target="_blank">5-aminovaleric acid (5-AV)</a> - both of which were reported in lower levels in the oASD mice, and how these compounds show a *connection* to <a href="https://en.wikipedia.org/wiki/Gamma-Aminobutyric_acid" target="_blank">GABA</a>, a compound potentially important to autism (<a href="https://questioning-answers.blogspot.com/2016/05/brain-gaba-levels-and-autism-meta-analysed.html" target="_blank">see here</a>). Further they showed that supplementation of 5-AV and taurine to another strain of mouse that serves as a 'mouse model of autism' (<a href="https://questioning-answers.blogspot.com/2012/06/btbr-mouse-and-autism.html" target="_blank">BTBR T+ tf/J (BTBR) mouse model</a>) resulted in "<i>improved repetitive and social behaviors.</i>" I should add the word 'mouse' into the sentence "<i>improved repetitive and social behaviors.</i>"<br />
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Insofar as the limitations of the Sharon studies and paper, various people have been keen to point out that the results should be viewed cautiously and as preliminary. This on the basis of the number of animals included for study, the reliance on mouse models of autism (and <a href="https://questioning-answers.blogspot.com/2017/03/logical-fallacies-in-animal-model-research.html" target="_blank">the logical fallacies</a> that can sometimes follow) and some of the generalisations made in the study write-up by the authors. I wouldn't disagree with such cautions, bearing in mind that some mouse models of autism - <a href="https://www.ncbi.nlm.nih.gov/pubmed/28472621" target="_blank">the valproic acid autism mouse model</a> for example - actually seem to be pretty good at mimicking some facets of (induced) autism. I'd also point out that the <a href="https://en.wikipedia.org/wiki/Metabolomics" target="_blank">metabolomics</a> work undertaken by Sharon and colleagues looks to be pretty wide-ranging (<a href="https://questioning-answers.blogspot.com/2015/11/the-continued-rise-of-autism-research-metabolomics.html" target="_blank">GC-MS and NMR are discussed</a>) and findings related to taurine have also been noted in other independent study (<a href="https://questioning-answers.blogspot.com/2012/11/that-recent-metabolomics-study-on.html" target="_blank">see here</a>). I also observed that there was a research tie-up with Arizona State University in the Sharon study, as the name Dae-Wook Kang is mentioned and 'poo transplants for [some] autism' makes yet another appearance (<a href="https://questioning-answers.blogspot.com/2017/01/a-poo-transplant-for-some-autism.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2019/04/a-poop-transplant-for-some-autism-2-years-on.html" target="_blank">see here</a>).<br />
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"<i>While ours is a limited study, with 16 donor samples from a pediatric cohort, the results support a hypothesis that the human gut microbiota contributes to ASD phenotypes.</i>" I'd agree that the Sharon results add a further layer to the idea that the new triad - <a href="https://questioning-answers.blogspot.com/2014/11/intestinal-permeability-emerging-scientific-area-also-with-autism.html" target="_blank">intestinal permeability, mucosal immunology and intestinal microbiota</a> - could be important to at least some autism. The results offer a road map for further investigation in this area and perhaps eventually, yet another avenue for screening and intervention to complement other recent initiatives (<a href="https://questioning-answers.blogspot.com/2018/11/starting-this-week-first-blood-test-for-autism-launched.html" target="_blank">see here</a>); all set with the view of the (plural) 'autisms'.<br />
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Finally, I note that <a href="https://www.cell.com/cell-reports/fulltext/S2211-1247(19)30626-6" target="_blank">another study</a> [2] mentioning the words 'mouse' and 'autism' has been published recently. With <a href="http://blogs.discovermagazine.com/d-brief/2019/06/04/exercise-alleviates-symptoms-of-autism-mouse-study-says/#.XPeluIjYq71" target="_blank">some media attention</a> mentioning how: "<i>Exercise reversed autistic behaviors in an animal model of the condition</i>" there didn't seem to be the same 'keenness' to point out the flaws of the Andoh study, despite once again a reliance on 'mouse autism' and all which that entails. It makes me wonder whether the focus on the second brain (gut) and autism detailed in the Sharon study might still have the ability to <a href="https://idioms.thefreedictionary.com/raise+hackles" target="_blank">raise hackles</a> in some quarters?<br />
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[1] Sharon G.<i> et al</i>. Human Gut Microbiota from Autism Spectrum Disorder Promote Behavioral Symptoms in Mice. <i>Cell</i>. 2019 May 30;177(6):1600-1618.e17.<br />
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[2] Andoh M. <i>et al</i>. Exercise Reverses Behavioral and Synaptic Abnormalities after Maternal Inflammation. <i>Cell Reports</i>. 2019; 27: 10. June 4.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-67443125594089261002019-06-05T09:59:00.001+01:002019-06-05T09:59:38.332+01:00"specific clinical and neuropsychological dimensions might be related to suicidal behaviors in ASD"The quote titling this post - "<i>specific clinical and neuropsychological dimensions might be related to suicidal behaviors in ASD</i> [autism spectrum disorder]" - comes from <a href="https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-019-2122-7" target="_blank">the findings reported by Luisa Weiner and colleagues</a> [1] (open-access). It adds to other recent research talking about how elements of autism *might* associate with suicidality (<a href="https://questioning-answers.blogspot.com/2019/05/ruminative-thinking-is-autistic-dimension-associated-suicidality.html" target="_blank">see here</a>). I should warn you that some of the Weiner findings make for difficult reading.<br />
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Authors described a case report of "<i>a 21-year-old male </i>[Mr A] <i>with ASD who attempted suicide twice, in the absence of other psychiatric diagnoses.</i>" They detail how, following some quite comprehensive observations, a possible *connection* was noted between his suicidality and "<i>some of the core clinical and neuropsychological features of ASD.</i>"<br />
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A few important points are highlighted in the Weiner study: "<i>Mr. A. reported that his suicidal thoughts started when he was 18, following an unrequited infatuation with a classmate – the result of a rational decision: he had decided to “fall in love” with her.</i>" Things did not however go as he planned, as we are told that: "<i>He started having “obsessive negative thoughts”, and attempted suicide by jumping from a window.</i>" He survived but "<i>his suicidal thoughts lingered, characterized by a restrictive, rigid pattern.</i>"<br />
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Researchers relied on the <a href="https://en.wikipedia.org/wiki/Beck_Depression_Inventory" target="_blank">Beck Depression Inventory (BDI)</a> to rule out depression in this case: his score "<i>was in the normal range (3/63).</i>" This inventory is one of a few that have been described as <a href="https://www.ncbi.nlm.nih.gov/pubmed/29360200" target="_blank">being "<i>robust in their measurement properties in the general population</i>"</a> [2] but with perhaps more to do in the context of its use in autism. In the absence of depression or rather elevated self-report scores indicative of depression, authors suggest this raises "<i>the question of whether the persistence of suicidal thoughts was associated with ASD-related features</i>."<br />
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The Weiner findings have to be placed in the context of other independent research looking at suicidality and autism. First, risk of suicidality is seemingly heightened when autism is diagnosed (<a href="https://questioning-answers.blogspot.com/2019/02/suicide-risk-and-autism-data-from-utah.html" target="_blank">see here</a>). Second, although depression - an important variable *linked* to suicidality - is over-represented in relation to autism (<a href="https://questioning-answers.blogspot.com/2018/09/depression-and-autism-same-message-as-before.html" target="_blank">see here</a>), questions are still being asked about the impact of depression in relation to suicidality accompanying autism in the context of an often complicated clinical picture (<a href="https://questioning-answers.blogspot.com/2018/03/autistic-traits-borderline-personality-disorder-enhanced-suicide-ideation.html" target="_blank">see here</a>). Third, the idea that the features/traits of autism might themselves be independent predictors of suicidality in autism has been discussed on several research occasions (<a href="https://questioning-answers.blogspot.com/2017/09/autism-diagnosis-as-independent-risk-suicide.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2018/04/autistic-traits-and-risk-of-suicidality.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2018/08/risk-markers-for-suicidality-and-autism-masking-insight-feature.html" target="_blank">see here</a>).<br />
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The culmination of all this work is that quite a lot more research and clinical resources need to be ploughed into looking at suicidality and autism. And, importantly, translating said research into real-world actions to potentially save lives.<br />
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If you need someone to talk to, <a href="https://www.nhs.uk/conditions/suicide/" target="_blank">there are organisations out there</a>...<br />
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[1] Weiner L. <i>et al</i>. A case study of suicidality presenting as a restricted interest in autism Spectrum disorder. <i>BMC Psychiatry</i>. 2019; 19: 126.<br />
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[2] Cassidy SA. <i>et al.</i> Measurement properties of tools used to assess depression in adults with and without autism spectrum conditions: A systematic review. <i>Autism Res.</i> 2018 May;11(5):738-754.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-54558636319225985692019-06-04T07:50:00.001+01:002019-06-04T07:50:37.330+01:00Barriers to recruitment in paediatric CFS research: "the focus of the study itself"<a href="https://images-assets.nasa.gov/image/SSC-20180131-s00030/SSC-20180131-s00030~medium.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="532" data-original-width="800" height="212" src="https://images-assets.nasa.gov/image/SSC-20180131-s00030/SSC-20180131-s00030~medium.jpg" width="320" /></a>I want to mention <a href="https://www.ncbi.nlm.nih.gov/pubmed/31029100" target="_blank">the study results published by Maria Loades and colleagues</a> [1] today. This piece of research focused on the issue of participant recruitment "<i>in the context of an observational study of mental health problems in adolescents with paediatric <a href="https://www.meassociation.org.uk/about/what-is-mecfs/" target="_blank">Chronic Fatigue Syndrome (CFS/ME)</a> presenting to a specialist paediatric CFS team</i>" and the barriers faced when trying to recruit for such a study. Various obstacles to participation were noted, including an important variable: "<i>the focus of the study itself.</i>"<br />
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The Loades article is open-access so doesn't need any long post from me. The main points: researchers asked researchers about their research experience specifically focused on "<i>exploring healthcare professionals’ views of recruiting to studies, including the facilitators and barriers to recruitment to this study.</i>" 'This study', by the way was an "<i>observational study of co-morbid mental health problems in adolescents with confirmed CFS/ME.</i>"<br />
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Results: based on interviews with six researchers, various qualitative results were provided. Some interesting points were raised. The ones that stood out for me were related to how researchers themselves talked about the research focus on mental health in relation to ME/CFS. A few choice quotes exemplify this: "<i>…because it’s got depression in the title and um I think um you it just seems a little bit more explanation um by inviting them to take part I’m not suggesting that they are depressed…</i>" and "<i>because it is more objectively more obviously about the mental health side of things I have found it to be a different experience recruiting to this.</i>"<br />
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I'm sure that for those with some knowledge about the debates on-going in the context of ME/CFS you can perhaps see where I'm going with this. I speak of course about the 'application' of things like the <a href="https://en.wikipedia.org/wiki/Biopsychosocial_model" target="_blank">biospychosocial (BPS) model</a> to ME/CFS which has, I'm afraid to say, caused some significant distress down the years to patients, their loved ones and many researchers alike (<a href="https://questioning-answers.blogspot.com/2016/10/chronic-fatigue-syndrome-and-biopsychosocial-model.html" target="_blank">see here</a> and <a href="https://questioning-answers.blogspot.com/2019/02/having-accessed-treatment-associated-lower-attendance.html" target="_blank">see here</a>). Indeed, one could argue that the application of the BPS model to ME/CFS, where 'unhelpful thoughts' for example are deemed part-and-parcel of some peoples view of ME/CFS, has been so damaging to the concept of ME/CFS, that any study looking at mental health in the realm of CFS/ME is likely to be seen as 'tainted' by association.<br />
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And, as I write, <a href="https://www.ncbi.nlm.nih.gov/pubmed/31045885" target="_blank">still the BPS beat continues</a> [2] although <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6498783/" target="_blank">with scrutiny continuing to follow</a> [3]...</div>
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[1] Loades ME. <i>et al.</i> Obstacles to recruitment in paediatric studies focusing on mental health in a physical health context: the experiences of clinical gatekeepers in an observational cohort study. <i>BMC Med Res Methodol</i>. 2019 Apr 27;19(1):89.<br />
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[2] Gregorowski A. <i>et al</i>. Child and adolescent chronic fatigue syndrome/myalgic encephalomyelitis: where are we now? <i>Curr Opin Pediatr</i>. 2019 Apr 30.<br />
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[3] Vink M. & Vink-Niese A. Cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective. Re-analysis of a Cochrane review. <i>Health Psychol Open</i>. 2019;6(1):2055102919840614. </div>
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Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com0tag:blogger.com,1999:blog-5548560205914833324.post-15345159276681255702019-06-01T11:40:00.001+01:002019-06-01T11:40:02.969+01:00Parent stress and autism: an issue that needs a lot more discussion<div class="separator" style="clear: both; text-align: center;">
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Two paper are brought to the (brief) blogging table today: <a href="https://www.ncbi.nlm.nih.gov/pubmed/31027225" target="_blank">the first from Nik Aida Nik Adib and colleagues</a> [1] and <a href="https://www.ncbi.nlm.nih.gov/pubmed/31025526" target="_blank">the second from Elena Pattini and colleagues</a> [2], both focused on the topic of stress and parenting in the context of autism.<br />
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Yes, I know to mention the words 'parenting stress' and 'autism' in the same sentence requires some caution. I know some people don't like to talk about this and related topics (<a href="https://questioning-answers.blogspot.com/2019/04/the-burden-of-care-of-mothers-autism-children.html" target="_blank">see here</a>). But obscuring such important research from view for fear of upsetting people or impacting on any 'positive PR' does little to approach an issue that is seemingly so widespread (<a href="https://questioning-answers.blogspot.com/2013/10/parental-stress-autism-reduction.html" target="_blank">see here</a>).<br />
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So what are the key points to take away from both papers on this topic?<br />
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1. "<i>Caregivers of an ASD </i>[autism spectrum disorder] <i>child perceived significant stress while taking care of their children.</i>" Not exactly a novel results I grant you, but important to reiterate.<br />
2. <a href="https://questioning-answers.blogspot.com/2014/08/learning-disability-in-autism-how-prevalent-is-it.html" target="_blank">Autism plus learning disability</a> seems to increase the 'perceived' stress.<br />
3. Parental stress may well present as physiological stress. This is particularly important in relation to the measurement of something called <a href="https://questioning-answers.blogspot.com/2012/12/autism-stress-and-cortisol.html" target="_blank">cortisol</a>.<br />
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OK, there's nothing earth-shattering about such findings. They again imply that as and when a child receives a diagnosis of autism or ASD, parents or primary caregivers might also benefit from some information on what they might expect and what they can do when it comes to coping with stress. Caring for the carers (<a href="https://questioning-answers.blogspot.com/2016/11/caring-for-carer-what-science-suggests.html" target="_blank">see here</a>) and offering things like respite care to those who need it (<a href="https://questioning-answers.blogspot.com/2016/09/respite-care-and-parent-stress-with-autism.html" target="_blank">see here</a>) sound like good initiatives. Bear also in mind, that parenting a child with autism is often done alongside parenting other children too, and what effect that can sometimes have on them (<a href="https://questioning-answers.blogspot.com/2015/10/views-on-autism-from-unaffected-sibling.html" target="_blank">see here</a>)...<br />
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[1] Nik Adib NA. <i>et al</i>. Perceived Stress among Caregivers of Children with Autism Spectrum Disorder: A State-Wide Study. <i>Int J Environ Res Public Health</i>. 2019 Apr 25;16(8). pii: E1468.<br />
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[2] Pattini E. <i>et al</i>. Psychological characteristics and physiological reactivity to acute stress in mothers of children with Autism Spectrum Disorder. <i>Stress Health</i>. 2019 Apr 26.<br />
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<br />Paul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.com2