Friday 17 January 2014

Complementary and Alternative Medicine (CAM) use and autism

I want to talk today about the paper by Roger Akins and colleagues [1] and their finding that: "Use of CAM [Complementary and Alternative Medicine] is common in families of young children with neurodevelopmental disorders". I know that this topic has a tendency to furrow brows and roll eyes in some quarters, particularly when written or spoken alongside the word 'autism', so I'm treading carefully with this quite long post. I will also make reference to my oft-cited caveat: no medical or clinical advice is given or intended on this blog.
elixir vitae @ Chemical Heritage Foundation

CAM - not to be mistaken for CAMHS - covers an awful lot of ground when it comes to the range of 'treatment' options available; as the NHS Choices website puts it "treatments that fall outside of mainstream healthcare". Under the CAM umbrella you have a range of procedures and interventions which cover everything from nutrition to mind-body interventions and seemingly everything in between. Views on CAM - the various ideas behind it and it's perceived effectiveness in general - tend to be split as a function of lots of different variables.

I found quite a good overview looking at the main reasons why people tend to use CAM from a cancer care perspective (see here) which I assume can be similarly applied to CAM use for other conditions or ailments too. Specifically with autism in mind, I dare say that the issues of 'feeling more in control' and 'natural and healing therapies' (bearing in mind the continued mis-representation of the word 'chemical') would probably rank high on the list of why CAM enjoys a following. Indeed, other autism research seems to back up some of these assertions [2].

I've been aware of CAM with autism in mind pretty much from the beginning of my research career, and this is certainly not the first time that it's been talked about in the peer-reviewed domain [3] (open-access) with some pretty good reviews of what CAM covers autism-wise [4] (open-access). The fact that I embarked on a research life examining the potential effectiveness of a gluten- and casein-free (GFCF) diet as an intervention for some of the signs and symptoms associated with autism (and possibly some of it's various comorbidities) might even put me in the CAM researcher box. If the truth be known however, I've never been particularly happy with giving the GFCF diet a place under the CAM umbrella, simply because more and more we are seeing peer-reviewed evidence emerging suggestive that food does seem to be implicated in some cases of autism (remembering the 'not quite coeliac disease paper' for example) and, in a similar vein to the condition called PKU, how food may for some people, have effects that go well beyond just a nutritional perspective. Just sayin'.

Anyhow, the Akins paper, which has received quite a bit of media attention (see here and see here and see here), looked at data derived from the CHARGE initiative (beincharge!) which on this occasion asked parents of young children with autism (n=453) or developmental delay (DD) (n=125) what kinds of interventions or therapies had been used to try and affect the presentation of autism, both conventional and falling under the CAM label. They reported that roughly a third of children in both their autism and DD groups were or had used intervention(s) described as CAM.

Some of the most popular interventions reported were those related to nutrition; be that the use of vitamin and mineral supplements or the implementation of a GFCF diet (or combinations thereof). Indeed to quote from one of the media sources on this paper: "Nearly 7 percent of children with autism were on the gluten-free/casein-free diet, particularly children with frequent gastrointestinal problems". Interestingly these interventions alongside the use of things like probiotics were generally considered 'safe' by researchers. Several other interventions were also reported including vitamin B12 injections and the use of chelating agents which have also been talked about on this blog (see here and see here).

One of the first things to pass through my mind upon reading the Akins paper was the parent survey results from the Autism Research Institute (ARI) which asked parents 'what worked for their child with autism' (see here). I know, I know, the ARI document is not peer-reviewed science and subject to all manner of biases including that of potentially bringing out more positive than negative responses for specific interventions, but that was where the Akins paper led me and indeed, how the CAM use results seem to map on to the ARI results.

I personally think autism research can learn a few lessons from the Akins paper from several different perspectives. So:

  • Going back to that suggestion that CAM might reflect more 'natural' therapies, I know there is some continued chatter about where CAM fits into the evidence-based medicine (EBM) model which we subscribe to these days. I don't want to get into the quagmire of EBM vs. the power of personal experience, but rather that further study is also required into the possible interactions that such CAM therapies may have with more conventional medicine. Quite a while back I talked about the interaction between fish oil supplements and chemotherapeutics (that is medication used in the treatment of cancer). What this and other studies point out is that your vitamin or nutritional supplement might be currently classified as a food supplement but that does not mean it can't have often quite potent biological effects. And certainly with the medicines cabinet seemingly being used for quite a few people on the autism spectrum (see here), there is scope for lots of potential interactions.

  • It was interesting to read that Akins and colleagues examined various correlates which potentially might explain CAM use as opposed to non-CAM use. So, they report that "Families who used >20 [greater than] hours per week of conventional services were more likely to use CAM" which could indicate an issue of either degree of parent involvement or severity of autistic symptoms [7] in the decision to use CAM or not. Interesting too was the focus on "immunization status" as a variable examined with CAM use or non-use in mind and their finding that "Underimmunized children were marginally more likely to use CAM but not more likely to have received potentially unsafe or disproven CAM". I probably don't need to point this out, but this perhaps again might be further evidence for that 'natural vs. synthetic or man-made' issue potentially at the core of CAM use. It also illustrates one possibility why CAM use in autism still resides on the edge of mainstream autism research insofar as the generalised association often [incorrectly] made between certain types of CAM and the issue of vaccination (or rather 'anti-vaccination') [8]. I'm not saying that there isn't alignment between some purveyors of CAM and specific views on issues like vaccination [9], merely that not everyone holds those views and this should not be a barrier to further research on CAM. A little bit like what happens when talking about certain gastrointestinal (GI) issues in relation to autism and the way that conversation sometimes goes....

  • The relationship between parents of children with autism and their healthcare providers is also touched upon in the Akins paper and how: "Further research should address how health care providers can support families in making decisions about CAM use". Huang and colleagues [10] recorded a potentially important point when it came to CAM use and autism in their study when indicating: "In children with ASD (the diagnostic group with the highest use of and satisfaction with CAM), physician's perceived knowledge of CAM was lower (14% versus 38%; p<0.05), as was perceptions of the physician's interest in learning more (p<0.05)." It is of course slightly unreasonable to expect every physician to know everything there is to know about CAM, particularly when applied to a condition as complex as autism. But given the age of the Internet and Dr. Google where all kinds of information is available to all, there is perhaps an even greater need for physicians to inform themselves about the ins-and-outs of such interventions and strategies and be able to advise accordingly based on the available evidence. Indeed, some physicians seem to be doing just that [11].

The Akins paper is certainly an interesting one in terms of highlighting how frequent CAM use is when it comes to autism. More than that though, it opens up a variety of discussion points [12] on the medical model, use of EBM, the patient-physician relationship and some of the complexities and politics of autism. That being said, we shouldn't lose sight of the fact that there are probably lots of reasons why parents of children with autism use or don't use CAM; probably in all cases, such decisions arrived at as a consequence of many very individual factors.

What the Akins paper did not address however was the important issue of how effective CAM use was and just as important, how ineffective CAM use was and for whom. This I assume being the next step in the research agenda...?

To close, readers in the UK will probably have heard about the death of Roger Lloyd Pack a.k.a Trigger from Only Fools and Horses. So, here's a theme tune which should bring back a memory of two... Dave.


[1] Akins RO. et al. Utilization Patterns of Conventional and Complementary/Alternative Treatments in Children with Autism Spectrum Disorders and Developmental Disabilities in a Population-Based Study. J Dev Behav Ped. 2014; 35: 1-10.

[2] Hanson E. et al. Use of complementary and alternative medicine among children diagnosed with autism spectrum disorder. J Autism Dev Disord. 2007 Apr;37(4):628-36.

[3] Levy SE. & Hyman SL. Complementary and Alternative Medicine Treatments for Children with Autism Spectrum Disorders. Child Adolesc Psychiatr Clin N Am. 2008 October; 17(4): 803–ix.

[4] Lofthouse N. et al. A Review of Complementary and Alternative Treatments for Autism Spectrum Disorders. Autism Res Treatment. 2012; 870391.

[5] Anagnostou E. & Hansen R. Medical treatment overview: traditional and novel psycho-pharmacological and complementary and alternative medications. Curr Opin Pediatr. 2011 Dec;23(6):621-7.

[6] Winburn E. et al. Parents' and Child Health Professionals' Attitudes Towards Dietary Interventions for Children with Autism Spectrum Disorders. J Autism Dev Disord. 2013 Sep 1.

[7] Perrin JM. et al. Complementary and alternative medicine use in a large pediatric autism sample. Pediatrics. 2012 Nov;130 Suppl 2:S77-82.

[8] Gupta VB. Communicating with parents of children with autism about vaccines and complementary and alternative approaches. J Dev Behav Pediatr. 2010 May;31(4):343-5.

[9] Ernst E. Rise in popularity of complementary and alternative medicine: reasons and consequences for vaccination. Vaccine. 2001 Oct 15;20 Suppl 1:S90-3

[10] Huang A. et al. Parental perspectives on use, benefits, and physician knowledge of complementary and alternative medicine in children with autistic disorder and attention-deficit/hyperactivity disorder. J Altern Complement Med. 2013 Sep;19(9):746-50.

[11] Golnik AE. & Ireland M. Complementary alternative medicine for children with autism: a physician survey. J Autism Dev Disord. 2009 Jul;39(7):996-1005.

[12] Committee on Children with Disabilities. American Academy of Pediatrics: Counseling families who choose complementary and alternative medicine for their child with chronic illness or disability. Committee on Children With Disabilities. Pediatrics. 2001 Mar;107(3):598-601.

---------- Akins, Roger S., Krakowiak, Paula, Angkustsiri, Kathleen, Hertz-Picciotto, Irva, & Hansen, Robin L. (2014). Utilization Patterns of Conventional and Complementary/Alternative Treatments in Children with Autism Spectrum Disorders and Developmental Disabilities in a Population-Based Study Journal of Developmental & Behavioral Pediatrics :

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