"less than half of participants mentioned autism in their identity descriptions"

One important point to make about the findings reported by Lily Cresswell & Eilidh Cage [1] is the participant number. It was small; including only 24 young people "recruited through mainstream secondary schools in London, UK" who were diagnosed with an autism spectrum disorder (ASD) and who were asked to participate in a study examining "the relationships between identity, acculturation and mental health in autistic adolescents." Small participant numbers means one has to be quite careful about making sweeping generalisations.

If that study aim - identity, acculturation and mental health - sounds a little bit like psychobabble to you, the long-and-short of it was to look-see whether there was a possible link between how young autistic people / people with autism see themselves ("the way a person understands and views him or herself, and is often viewed by others") and their self-reported mental health; also including the concept of 'autistic culture' into the research mix.

OK, first things first: autistic culture. From what I read, it kinda sits somewhere around the idea of 'neurodiversity' (see here) with culture defined as "a system of meanings through which people organise and make sense of their lives." The addition of the word 'autistic' to culture therefore means "building a culture around the ways of speaking, thinking, and acting that come naturally to autistic people." The authors liken autistic culture to deaf culture "with both being supportive communities focused on the distinctive issues and experiences related to being autistic or deaf." Noble intentions on both counts.

Study participants were given the Twenty Statements Task (TST) - "a measure used to assess how individuals define themselves using their own words" - and the Autism Identity Scale (AIS) which "looks at whether an individual aligns more to an autistic or non-autistic culture." Responses to these instruments and to the Strengths and Difficulties Questionnaire (SDQ) were captured and analysed.

Results: I should point out that the AIS used in this study is not exactly what one would call a 'mainstream' instrument. Indeed, the reference for it's development and use comes from a doctoral thesis which, as far as I can see, is the only reference at the present time. The authors talk about responses on the AIS being use to rank participants into one of four groups: "Marginalised (alignment to non-autistic culture)... Bicultural (alignment to both cultures)... Assimilated (alignment to neither culture)... and Separated (alignment to autistic culture)." I'm not altogether sure but I think some of those groupings and their descriptions mentioned by Cresswell/Cage might not be exactly the same as that talked about in the thesis from Jarrett (see page 20 of the thesis). The AIS by the way, purports to measure both "autistic (AIS1) and non-autistic (AIS2) acculturation."

Cresswell/Cage observed that: "Average scores on the AIS2 were higher than the AIS1, indicating autistic adolescents typically felt more aligned to non-autistic, than autistic, culture." Minus any sweeping generalisations, this meant that participants as a group were typically more inclined towards statements like "I feel that I fit in with other people who do not have autism" and "I would prefer my education to be at a school with and without people with autism" over and above "Being autistic is an important part of who I am" and "I would prefer my closest friend(s) to have autism." Again, I reiterate that no sweeping generalisations are to be made from such findings on the basis of such a small participant group. Also added to those alignment findings, researchers observed some potentially important connections to SDQ scores used as a proxy for self-reported mental health and wellbeing. Specifically that the "lowest scores [on the SDQ] were found in those who aligned themselves only non-to autistic culture (assimilated; n = 7)." This *could* be translated to mean that self-reported mental health and wellbeing was marginally better for those who identified with a specific culture and, in particular, non-autistic culture.

I kinda get the impression that the results garnered during this study weren't exactly what the authors were expecting. Indeed, as I've mentioned before on this blog, there is 'slant' towards the whole neurodiversity angle in other research from some of the authors of this study (see here and see here) which would have probably benefited from different results being observed on this most recent research occasion. Credit is therefore due to the authors for publishing their findings. The inclusion of phrases such as: "These findings suggest autistic adolescents should be encouraged to explore autistic culture and supported in constructing their identity" included in the paper poses a bit of a quandary because that's not entirely what the resultant data implied. I've seen similar things particularly where neurodiversity has been mentioned in the context of autism before (see here). Indeed when we are also told that "less than half of participants mentioned autism in their identity descriptions", one interpretation is that many participants see/saw themselves as so much more than the sum of a clinical diagnosis they've received at some point. I daresay others will have alternative explanations for such findings.

More study is required on this topic. More study around the issue of 'belonging' in the context of autism, and the potential 'positives' that belonging brings (see here), is something that stands out from the Cresswell/Cage findings. Insofar as the concept of autistic culture, well, we'll have to see. Much like the term 'autistic community' (see here) used on more than one occasion, the inference is that there's some universal 'one-size-fits-all' ethos that everyone on the autism spectrum should be adhering too. The reality however, is some much more varied and complicated, bearing in mind the oft-used phrase: if you've met one autistic person, you've met one person with autism (or words to that effect). Yes, people should be proud of themselves. Everyone should have a sense of self-worth, achievement and that word again, belonging. But as per the small scale results from Cresswell/Cage, that pride and identity does not necessarily have to mean aligning oneself according to the receipt of a clinical diagnosis...

----------

[1] Cresswell L. & Cage E. ‘Who Am I?’: An Exploratory Study of the Relationships Between Identity, Acculturation and Mental Health in Autistic Adolescents. J Autism Dev Disord. 2019. April 19.

----------

Stepping into big data: who in the world walks the most each day?

With some journalistic flair, the BBC headline titled: 'Do you live in the world's least active country?'' caught my eye recently, discussing the findings reported by Tim Althoff and colleagues [1] (the first edition of their headline mentioned 'laziest' over 'least active'!)

The name of the research game was to analyse captured data on some "68 million days of minute-by-minute step recordings from 717, 527 anonymized users of the Argus smartphone application developed by Azumio." Said data spanned over 100 countries around the world, although researchers chose to zoom in on 46 countries where at least 1000 people had downloaded the app.

Results suggested that there were some quite considerable differences in steps per day according to the country data analysed and also variables such as gender/sex. Participants in Hong Kong for example, irrespective of gender, were top of the walking chart clocking up an average of 6800 steps per day. At the opposite end of the steps per day spectrum, those in Indonesia averaged just 3500 steps per day. The average number of steps per day across all the data analysed was round about the 5000 mark. There are some other potentially important snippets of information also included in the Althoff paper - the concept of 'activity inequality' - but I'm gonna stick with the steps per day data on this occasion.

A few times before on this blog I've talked about steps per day and walking patterns (see here and see here for examples) and what they might mean for health and wellbeing. Being partial to wearing an actigraph day-to-day, I see walking as part of the my own exercise regime and am a fan of things like the 10,000 steps a day challenge. Not least that as well as aiding in maintaining good physical health, there may be various other benefits from walking as part of a consistent exercise regime. Accepting that there may be various reasons why people don't walk perhaps as much as they should - health issues, age, environment and 'walkability' of the environment, etc - I am a little disappointed with the observations emerging from the Althoff paper insofar as how sedentary many people worldwide seemed to be. Yes, the current data was based on an app and so may have a degree of error in terms of it's recording capability (including whether a phone was carried with a person throughout the day or when engaging in other physical activities) but the average steps being counted per day seem to be quite a bit lower than many experts are advising for maintaining optimal health.

And because walking is [typically] free and can be undertaken by most people, I'd personally like to see a bigger push from Governments and the like to get more people back into walking...

----------

[1] Althoff T. et al. Large-scale physical activity data reveal worldwide activity inequality. Nature. 2017. 10 July.

----------

Early mortality in mums of children with autism or intellectual disability

I know the paper by Jenny Fairthorne and colleagues [1] (open-access) is probably not the happiest thing to read with their conclusion that: "During the study period, mothers of children with intellectual disability or ASD [autism spectrum disorder] had more than twice the risk of death" but their message is nonetheless an important one.

Based on data derived from "state-wide databases" covering women living in Western Australia who gave birth between 1983 and 2005, researchers detected mums with a child diagnosed with autism and/or intellectual disability (learning disability if you prefer) and cross-referenced findings with "the state mortality registry" providing information on "dates and cause of death by ICD-9 or 10 codes". Various study (case) groups were formed on the basis of offspring diagnosis - intellectual disability (ID) of unknown cause (further separated based on levels of ID), ID of known cause (specifically Down syndrome or other) and a diagnosis of autism spectrum disorder (ASD) with and without ID - and aided analyses.

After some correction for various confounders including maternal age and socio-economic status (SES), from a starting population of some 300,000 mothers, approximately 1% had died before 2011 (the longer follow-up period). To quote: "Twenty-five years after the birth of their index child, the survival rates of mothers of children with no intellectual disability and no ASD were about 98%, followed by 96% for mothers of children with ASD and 95% for mothers of children with intellectual disability." These group difference were significant and led researchers to draw the conclusion: "Mothers from all case groups had an increased risk of death during the study period."

A few other details are also recorded in the Fairthorne study. "Mothers with both a psychiatric disorder and a child with intellectual disability or ASD had about six and a half times the risk of death" was an important finding reported by the authors. When it came to the cause of death, various factors were over-reported in case group mums including cancers, cardiovascular disease and death by misadventure (death due to an unintentional accident, homicide or suicide according to the authors' criteria).

Reiterating that the Fairthorne paper makes for quite uncomfortable reading, there are some potentially important lessons to be learned from the collected data. First and foremost I should stress that the excess percentages of deaths reported during the study period were overall, quite small for the case groups. Whilst there was an excess of deaths over and above that seen in the asymptomatic control group, the data do not suggest that mothers of children with autism or Down syndrome for example, are facing a gigantic excess risk. Risk is risk and influenced by lots of different variables. I say all that with my cold, dispassionate science goggles on, recognising that each death is a mother lost.

That being said, one might make a case for further inspection of maternal (and paternal) health and wellbeing as and when a diagnosis of autism and/or ID is received in one or more offspring. I've covered the topic of parental stress and autism before on this blog (see here) and the [evidence-based] ways and means it might be reduced. Stress is mentioned in the Fairthorne paper as potentially being one factor linking parenting and early mortality although I'd also suggest the concepts of resilience and coping might also require investigation.

Maternal health issues such as a history of psychiatric issues and/or more somatic diagnoses like diabetes and obesity are also covered in the discussion on possible reasons for the added risk in case groups. As per the research suggesting that some of these factors alone or in combination might increase the risk of offspring autism for example (see here), management of said issues should also rank high on the list of monitoring parental wellbeing. Lifestyle issues such as tobacco smoking and poor exercise regimes can also be mitigated if and when required.

Finally, I want to make one further point specifically related to the idea that cancer may feature as one reason for the excess mortality noted in the current study. Late last year (2014) I covered the complicated issue of cancer risk and autism (see here) on the basis of some further 'big data' derived from the Taiwan National Health Insurance database [2]. In amongst the discussions on that post was some mention of a familial history of certain cancers potentially being heightened in cases of autism on the basis of data from Ingudomnukul and colleagues [3]. The Fairthorne data corroborates this view, and further implies screening should perhaps be preferentially extended to mums of children with ID and/or autism. Early detection can save lives.

Mortality and autism is never going to be a great topic to discuss whether based on personal experience or the peer-reviewed evidence base. Linked to the suggestion that a diagnosis of autism - or at least some of the comorbidities which it can carry - for example, might also elevate the risk of early mortality (see here), I believe that it is time to start bigger conversations on how science and society can go about reducing such risk and reducing health inequality. Mothers, like their children, are precious things...

----------

[1] Fairthorne J. et al. Early Mortality and Primary Causes of Death in Mothers of Children with Intellectual Disability or Autism Spectrum Disorder: A Retrospective Cohort Study. PLoS ONE. 2014; 9(12): e113430.

[2] Chiang H-L. et al. Risk of Cancer in Children, Adolescents, and Young Adults with Autistic Disorder. J Pediatrics. 2014. 18 November.

[3] Ingudomnukul E. et al. Elevated rates of testosterone-related disorders in women with autism spectrum conditions. Horm Behav. 2007 May;51(5):597-604.

----------

Fairthorne J, Hammond G, Bourke J, Jacoby P, & Leonard H (2014). Early Mortality and Primary Causes of Death in Mothers of Children with Intellectual Disability or Autism Spectrum Disorder: A Retrospective Cohort Study. PloS one, 9 (12) PMID: 25535971

How many steps a day should I be walking?

Granted, this entry is a slight departure from the usual material to be found on this blog, but I'm going to post it nevertheless. I'm a big fan of walking. I know that probably sounds a little bit obvious, but I'm actually referring to the use of walking as a tool to keeping in shape rather than just getting from A to B.

Tudor-Locke C. et al (2011) Int J Behav Nutr Phys Act.

Here in the UK (and perhaps beyond) there is quite a lot of chatter about the '10,000 steps a day' challenge (see here) and how walking seems to confer quite a lot of physical (and potentially psychological) benefits.

I know it might seem a little arbitrary to say that we should all be working towards 10,000 steps (as many of our health standards seem to be) but there is some evidence emerging that the magic number of 10,000 might be an important standard*.

Anyhow, I stumbled across the paper by Catrine Tudor-Locke and colleagues** (open-access here) who seems to be quite an important name in the area of 10,000 steps. The paper as you'll see talks about how various ages and genders seem to vary in their daily step count and onwards produce some kind of population normative standards.

It's an interesting review but what particularly took my attention in these days of infographics was the picture attached (which can be found here that I've reproduced with all rights reserved to the authors and publishing journal).

There's not too much more for me to say about it aside from 10,000 steps is a nice universal number to aim for but bear in mind this figure might not reflect the daily goal for everyone. It's also interesting that as we age so our step count goes down, which to me at least, suggests that we should all be living life a little more like when we were children (from a walking perspective).

So, with my blogging caveats of not giving medical or clinical advice in full working order, don't be afraid to put on a comfy pair of walking shoes or trainers and go and enjoy the fresh air with a pedometer if you choose or with the knowledge that 10 minutes of fairly brisk walking is equivalent to about 1000 steps...

----------

* Tudor-Locke C. & Bassett DR Jr. How many steps/day are enough? Preliminary pedometer indices for public health. Sports Med. 2004;34(1):1-8.

** Tudor-Locke C. et al. How many steps/day are enough? for children and adolescents. Int J Behav Nutr Phys Act. 2011 Jul 28;8:78.

----------

Tudor-Locke C, Craig CL, Beets MW, Belton S, Cardon GM, Duncan S, Hatano Y, Lubans DR, Olds TS, Raustorp A, Rowe DA, Spence JC, Tanaka S, & Blair SN (2011). How many steps/day are enough? for children and adolescents. The international journal of behavioral nutrition and physical activity, 8 PMID: 21798014