"If you want to support Greta Thunberg, don’t do it by defending her autism – stand up for her beliefs instead"

The quote titling this post - "If you want to support Greta Thunberg, don’t do it by defending her autism – stand up for her beliefs instead" - comes from a recent newspaper report by James Sinclair on the noble actions of the 16-year old Greta Thunberg, the current poster person for student activism.

Many people will have heard of Greta and her school strike for climate which snowballed into an international movement demanding action on global warming and climate change. She's subsequently been named as "one of the 100 most influential people of 2019" and could even be in the running for a Nobel prize later this year (2019). Not many teenagers can add those sorts of credentials to their CV...

Alongside the important message that Greta has spread, the revelation that she has a diagnosis of autism - Asperger syndrome - has not escaped media and indeed, social media attention. Her autism diagnosis (Asperger syndrome is now pretty much defunct as a clinical diagnosis) has, in many ways, been placed front-and-centre of her story, but not always in the politest of terms.

The Sinclair feature on Greta caught my eye for several different reasons. Diagnosed himself with autism, Sinclair approaches an important part of the Greta Thunberg story: how autism is not necessarily relevant to the important climate change message that is being promulgated. Indeed, some stand-out quotes from his article are worthwhile circulating widely: "This is why many including myself struggle with sharing our diagnosis with people, as once we do everything is viewed through a person’s past experiences and expectations of autism" and "It suggests that autism is still perceived as something we must all scramble to protect at a moment’s notice."

Why is this relevant? Well, potentially for lots of different reasons, some of which have kinda been picked up in a recent paper by Lily Cresswell & Eilidh Cage [1] which was blogging fodder (see here) not so long ago. The message then - albeit a message derived from a small participant number - was that autism is not necessarily the 'identity' that some would like it to be represented as. For example, as reported in the Cresswell/Cage result: "less than half of participants mentioned autism in their identity descriptions", inferring that many young people potentially see themselves and their achievements/struggles as so much more than due to the receipt of a clinical diagnosis. And one can perhaps see that the continual pressure to make autism a part of any successful narrative, whilst noble in intent, seemingly does little for either the individual and their personal accomplishments nor the masses, on the basis of the significant heterogeneity of autism and how autism for some means things like early mortality (see here) and lots and lots more besides. It perhaps should also be noted that depression has also been mentioned by Greta too: "After learning about climate change when she was 8, Greta later developed depression when she was 11, which she links partly to the issue" but this point doesn't seem to have been widely picked up on even bearing in mind that autism / autistic traits and depression have some important links (see here for example).

I appreciate that my ramblings about autism not necessarily being an identity for all nor not always relevant to a person's socio-political messages aren't likely to be received well by everyone. That's fine. I'll end however with comments from Greta herself and her views of autism and other labels "not being a gift." The caveat she makes to that point being that with appropriate adjustments, support and resources, there are things that can make life easier for those on the autism spectrum and beyond. Bearing in mind that is, the need for 'personalisation' of such supports and a move away from any 'one-size-fits-all' philosophy.

And whilst I'm on the topic of Greta Thunberg, it seems as though her autism diagnosis is now being dragged into the 'autism wars' too (see here). Yet another example of her important climate message seemingly being overshadowed...

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[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.

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"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...

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[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.

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"hold promise as cross-cultural key indicators for autism"

The quote heading this post - "hold promise as cross-cultural key indicators for autism" - comes from the paper by Sophie Carruthers and colleagues [1] which "aimed to identify the items on the Autism Spectrum Quotient (AQ)-Child that are most predictive of an autism diagnosis among children aged 4–9 years across samples from India, Japan and the UK." Attempting to fill quite an important 'hole' in the use of the go-to 'are you autistic' screener, authors set out to look at the presentation of autistic traits across three different countries, all with some quite different cultural perspectives and contexts.

The Carruthers paper is open-access so doesn't need too many grand discussions from me. The basics: "parent-reported AQ-Child data from India (73 children with an autism diagnosis and 81 neurotypical children), Japan (116 children with autism and 190 neurotypical children) and the UK (488 children with autism and 532 neurotypical children)" was the source material. Once again I'll mention how the term neurotypical is a misnomer (see here); it's use in this paper is all the more surprising given that one of the authors wrote an editorial paper [2] mentioning how "there is no single way for a brain to be normal, as there are many ways for the brain to be wired up and reach adulthood." Oh well.

Results: from the collected data, researchers were able to undertake various statistical analyses. Pertinent to the quote titling this post were some important findings "identified to be universal key indicators" across the different countries and cultures. These were: "In a social group, s/he can easily keep track of several different people’s conversations; s/he enjoys social chit-chat; s/he knows how to tell if someone listening to him/her is getting bored; s/he is good at social chit-chat and s/he finds it difficult to work out people’s intentions." Alongside, various other indicators were rated as "performed excellently or acceptably" across the three different country groups.

The conclusion: "Cross-cultural overlap in the items most predictive of an autism diagnosis supports the general notion of universality in autistic traits whilst also highlighting that there can be cultural differences associated with certain autistic traits." I'd like to see more research done in this area. Quite a few years ago I posed the question 'Is autism the same all over the world?' (see here) and well, I don't have a good answer despite the Carruthers and other results. Obviously such a question needs also to be wrapped in the idea that the plural 'autisms' also exert an effect (see here) and take into account other factors such as comorbidity (if that is the right word). It should also perhaps appreciate that whilst the AQ is undoubtedly 'picking up' something, it might not just exclusively be autism or autistic traits (see here and see here)...

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[1] Carruthers S. et al. A cross-cultural study of autistic traits across India, Japan and the UK. Molecular Autism 2018; 9:52.

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Worldwide autism

Autism spectrum conditions within a global context has been a topic of some interest in recent days as per papers like this one and posts like this one. Without trying to jump on the bandwagon, I offer this post on autism worldwide for your interest. I will warn you that there are some quite sensitive issues described in this post and no offence is intended.

In the post 'Is autism the same all over the world?' I attempted to discuss a few issues around autism within a more global context. No specific conclusions were reached in that post given a bit of a gap in the research literature when it came to autism outside of Europe and the USA; aside that is, from the fact that autism is a global phenomenon. Since then, quite a few papers have emerged discussing various aspects of autism in other countries. Some of these papers had some interesting content which got me thinking.

This paper by Sayyed Ali Samadi and Roy McConkey* (full-text) is, by my reckoning, quite a good read when looking at a model of autism in the developing world. The authors focused on Iran as a template for autism in other developing countries in terms of (i) prevalence, (ii) understanding of the condition and (iii) the application of resources where money is not exactly flowing, or at least not to the standards seen in other countries even with the current economic downturn in mind.

Without wishing to regurgitate the entire paper contents, a few details were striking:

• Prevalence data on autism is limited in developing countries. I could probably think of quite a few reasons as to why this might be so, but the more obvious ones are things like money, resources and accessibility. Add to that certain cultural nuances as per those described in the SK study and the fact that most of the instruments currently used for screening and assessing autism are in English (with population norms to match), and the waters start to become a little clearer as to why prevalence data might be so limited.
• Related to the issue of cultural 'norms' are the various effects of knowledge and understanding about autism. The fact that 12% of the parents interviewed in a different study completed by some of the authors (here) believed that their child's autism was as a result of ".. God’s test and probable sins that they might have done unconsciously" is noteworthy. Appreciating that such views might seem a little out of place to some people, I don't want to belittle what has been said or try and put a 'Western slant' on to it because of the need to respect individual beliefs. I'm sure also that most parents of a child with autism, and lots of other conditions, might have at one time or other questioned the how and why, including some spiritual aspect also. What this does perhaps illustrate is how culture and beliefs - whether individual or societal, fluid or stable - can influence perceptions of conditions like autism. 
• The relatively small contribution of genetics to autism aetiology cited by parents included in the same study (7%) compared with environmental factors (23%) is also striking bearing in mind recent history in that region. This contrasts with other research conducted with European and North American parents where brain and genes seem to be more commonly regarded as 'causative' factors.
• Parental stress associated with raising a child with autism receives mention as it has done in previous research. Not to dwell too much on the spiritual aspect, the authors discuss how coping strategies might to some degree be derived from Faith and to quote: "Taking care of children is an order from Allah to all Muslim parents". I found this study by Ekas and colleagues** which offered some insight into how religion and spirituality may influence coping patterns and styles used by parents of children with autism. The caveat being that parents seem to derive coping strength from lots of different sources at different stages of their, and their child's, development including, I assume, what provisions society makes available to help families, whether this be by religious or social means.

A second paper also well worth a look is this one by Bakare and colleagues*** (full-text). This paper is more of an analytical type as per its aim to look at potential variations in language acquisition and age at presentation in cases of autism in Africa. The authors report some interesting findings based on their meta-analysis but perhaps the more relevant material to this post comes from their discussions of knowledge and awareness of autism in Africa.

Such that:

• What the authors describe as 'preternatural and supernatural aetiological explanations' for autism were notable in some reports. I assume that this coincides with culture and superstitions which even today still contribute to modern life in some areas of the World. 
• Whether because of superstition or because of a lack of awareness and training on autism, general knowledge about autism seemed to be quite sparse. This has obvious repercussions for screening, diagnosis and the possibility of early intervention for cases of autism.

Cumulatively, these and other papers provide some thought-provoking insights into autism in parts of the world not necessarily thought about as much as they should be. I do think there is a balance to be struck when talking about autism in developing nations. On the one hand, there is a need to ensure that people with autism, wherever they are, have access to the necessary and appropriate services and opportunities to enable their potential to be reached including suitable support for families. On the other hand is a respect for cultural and personal values, such that systems and values more commonly associated with the so-called developed countries are not forced upon others who might have a slightly different perspective.

Autism has been the focus of this post, but I assume that lots of different conditions could be transposed on to these findings with similar cultural differences reported. Just in case however that you thought things were 'all developed and rosy' in our part of the world with regards to autism, bear in mind that there is still some distance to go even right on our own doorstep.

* Samadi SA. & McConkey R. Autism in developing countries: lessons from Iran. Autism Research & Treatment. 2011
DOI: 10.1155/2011/145359

** Ekas NV. et al. Religiosity, spirituality, and socioemotional functioning in mothers of children with autism spectrum disorder. JADD 2009; 39: 706-719

*** Bakare MO. et al. Excess of non-verbal cases of autism spectrum disorders presenting to orthodox clinical practice in Africa – a trend possibly resulting from late diagnosis and intervention. The South African Journal of Psychiatry. 2011; 17: 118-120