2018 autism research review on Questioning Answers

So, once again it's time for my annual 'what was hot in autism research this year' roundup. As in previous years (see here), 2018 was a year packed with all sorts of weird (see here) and wonderful (see here) research and research-based discussions. Some important key themes emerged and/or continued to be discussed that I'd like to bring to your attention.

So...

1. Autism does not typically appear in a diagnostic vacuum.

Last year (2017) I predicted that we'd see a lot more (research) recognition that autism rarely appears in some sort of diagnostic vacuum, be that in relation to behavioural and psychiatric labels or more somatic diagnoses. I'd like to think that I was roughly right, as various papers were published pertinent to this topic. A few articles that were covered on this blog included:

• Autistic traits occurring in Borderline Personality Disorder
• Unrecognised autism in epilepsy
• Long-term health conditions and autism: a Scottish perspective
• "Anxiety and depression in adults with autism spectrum disorder" research reviewed and meta-analysed
• Colliding spectrums again: autism and schizophrenia meta-analysed (again)
• Yet more 'the label of autism rarely exists in a diagnostic vacuum' research

There's still a way to go in this area. Various questions need answering such as whether 'comorbidity' is the factually correct word to use in some contexts [1] or whether, in some circumstances, various *issues* might actually be more 'core' to the presentation of autism. Y'know, something like what Mildred Creak talked about with regards to anxiety and autism for example [2] quite a few years ago albeit with some different terminology. This also has some important implications, not least for how such *comorbid* issues are to be managed if connected to core autistic features alongside the pitfalls of self-diagnosis.

2. The (estimated) prevalence of autism.

The autism numbers game features prominently every year. In 2018 it was particularly notable as a result of the United States CDC releasing their 'once every two year estimates of autism in 8-year olds' report. A few posts covered this and other research including:

• On the recent report suggesting that US autism rates "appear to be stabilizing"
• The yet newer CDC estimated autism prevalence rate: 1 in 59 8-years olds with autism in 2014
• Estimated autism prevalence in Northern Ireland: 2.9% for 2017-2018
• The prevalence of autism in China meta-analysed
• Autism prevalence in California: 1931 to 2014
• The Scotland Census 2011 and autism again: focus on children and young adults
• One more time... (roughly) 1 in 40 children with parent-reported autism in the US

The net result of all this research is that whilst it's pretty difficult to say exactly how many people have been diagnosed with autism or an autism spectrum disorder (ASD) in any particular population at any particular time, the estimates continue to flood in. And the bottom line seems to be: the 'growth' in the (estimated) numbers is seemingly still continuing at a pace and science should continue to be asking 'why'? (see here and see here for examples). Policymakers likewise should also continue planning and ensuring that money, resources and services are available to all who need them.

3. The autisms (plural). 

The autisms. Y'know, the idea that within the huge heterogeneity that is covered by the label 'autism' or 'ASD', there may be lots of different 'types' of autism and/or pathways to the diagnosis. It's a topic that continues to be explored in the peer-reviewed research arena. Some examples this year include:

• Folate receptor autoantibodies and autism... replicated
• Folate receptor autoantibodies and autism... replicated (yet again)
• Another blood test for autism?
• The Children’s Autism Metabolome Project (CAMP) reports: "Amino acid dysregulation metabotypes"
• Yet more evidence suggesting that 'lifelong' is not an accurate description of some autism
• "Starting this week, the first blood test for autism will be available to the public"
• "abnormally high extra-axial cerebrospinal fluid (CSF) volume" and autism
• Headline fail: "Autism traits could be 'edited' out genetic trial suggests"
• "and some will be largely free from symptoms of the disorder by adulthood"

And you'll perhaps have noted that among some of that research, words like 'actionable metabolic tests' have been used indicating that observable behaviour might eventually not be the only variable when it comes to diagnosing autism. Indeed, I'll be blogging about this more early in the New Year based on further study [3]...

4. The ICF core sets for autism.

I've talked quite a bit on this blog in 2018 about the development of the ICF core sets for autism. This initiative has an important purpose: "To capture [the] complex melange of functioning experiences beyond the diagnosis, the ICF offers a tool to describe the lived experience of a person with ASD in a comprehensive and standardized way." And progress was seemingly made in 2018 and long should it continue:

• ICF core sets for autism: "third in a series of four empirical studies"
• Edging ever closer to the ICF core sets for autism
• The ICF core sets for autism in action

5. Other news, views and progress.

Because there were a myriad of other research papers published in 2018 and discussed on this blog, I've included a few other posts that might be an interesting read for some. It's a mixed bag of science, news and ideas, but hopefully you can see that autism research continues at a pace in various different directions.

• Challenging behaviour and autism: how do parents manage it?
• Once more... listen to parents: on the identification of the early behavioural signs of autism
• Regression in autism: the rule rather than the exception?
• Hans Asperger "was actively involved in the Nazi regime's euthanasia programme in Austria"
• "evidence does not support the validity of pathological demand avoidance as an independent syndrome"
• What factors potentially predict quality of life in adults with autism?
• "Theme 3: Inadequate Provision for Post-diagnostic Support" for autism
• "weak evidence that EIBI may be an effective behavioral treatment for some children with ASD"
• Constipation in kids with autism: financial as well as health implications
• "aggressive behaviour is not a choice for children with autism": a legal decision with implications...
• "Risk markers for suicidality" and autism: masking or insight as a feature?
• "Has Daniel always been autistic?"

As to my prediction of 'where next?' for autism research in 2019, well, I'm hoping that the topic of nutritional deficiency and autism might receive quite a bit more 'interest' given the quite worrying data that is emerging on the topic of scurvy and autism for example (see here and see here and see here). It's not exactly difficult research to undertake, and given what nutritional deficiency can mean for some folk (yes, things like physical pain and discomfort), I'd suggest that it should be made a research priority. Perhaps add it to the autism research list?

And finally as always, Happy New Year. I hope you'll visit and enjoy this blog again in 2019 - you know that you're always welcome!

----------

[1] Rubenstein E. & Bishop-Fitzpatrick L. A Matter of Time: The Necessity of Temporal Language in Research on Health Conditions that Present with Autism Spectrum Disorder. Autism Res. 2018 Sep 5.

[2] Evans B. How autism became autism: The radical transformation of a central concept of child development in Britain. Hist Human Sci. 2013;26(3):3-31.

[3] Barone R. et al. A Subset of Patients With Autism Spectrum Disorders Show a Distinctive Metabolic Profile by Dried Blood Spot Analyses. Front Psychiatry. 2018;9:636.

----------