Is 'escape' the most common function of challenging behaviours in autism?

'Challenging behaviour', 'disruptive behaviour' and 'behavioural crises' are terms that have been used to describe a range of behaviours "that are not culturally or socially acceptable, put the physical safety of the individual and/or others in jeopardy, affect learning, and/or limit access to community setting" in the context of autism and beyond.

A recent paper published by Esther Hong and colleagues [1] continued the research interest in this area (see here and see here) specifically focusing on gaining "perspective on what are the most commonly treated topographies of challenging behaviors" and "to identify the most commonly reported functions of those challenging behaviors." I'm assuming use of the word 'topography' in this context means 'profile' in terms of what types of challenging behaviours were noted.

Relying on behavioural data from over 3200 people diagnosed with an autism spectrum disorder (ASD) who were "receiving a minimum of 20 h of ABA [applied behavior analysis] treatment per month", researchers examined data on a range of behaviours falling into the category of 'challenging'. These included: "(a) aggression, (b) disruption, (c) elopement, (d) inappropriate sexual behavior, (e) lying, (f) noncompliance, (g) obsessive behaviors, (h) pica, (i) self-injurious behavior, (j) stealing, (k) stereotypy, (l) tantrums, and (m) teasing/bullying." Accepting that ABA in the context of autism is not everyone's cup of tea (despite some important data emerging [2]), one of the 'benefits' to this study at least, was that behaviour was recorded in some detail as a function of the implementation of ABA using something called The Skills™ database. This also allowed researchers to examine the potential 'function' of such behaviours too: "Skills™ also contains a field denoting the function of the behavior as identified by the supervising behavior analyst at the time of observation. Functions are classified as “attention,” “automatic,” “escape,” or “tangible.”."

Results: "The most commonly treated challenging behaviors were stereotypy, noncompliance, aggression, tantrums, SIB, elopement, disruption, and obsessive behaviors, respectively." Although 'stereotypy' ('the persistent repetition of an act) was the most frequently observed 'challenging behaviour', I'd personally be a little reluctant to put it into this category. I say this because there have been some reports suggesting that such a behaviour serves an important purpose in terms of being calming and aiding coping in certain situations for certain people. The majority of those challenging behaviours were coded most frequently in terms of 'escape' when it came to perceived function by the therapists who were doing the coding. Interestingly, and going back to my point about stereotypy, this behaviour was most frequently coded as 'automatic' alongside another behaviour that probably shouldn't be seen as a challenging behaviour: obsessive behaviours. Automatic, I assume, means just that: involuntary and well, automatic.

Alongside such information, authors also detail some nice Venn diagrams to illustrate how various categories of behaviours (and their specific manifestations) might meet and *correlate* based on their acquired data. Certainly, in the context of aggression and self-injurious behaviour (another important topic), there are some potentially important details to discern.

Although ABA still remains a point of contention among some, in the context of the Hong report, I can see how the quite detailed data collection on behaviour that it accrues holds some important information in the presence of some often, quite distressing behaviours. I'm happy to think that 'escape' could be a quite common function of various challenging behaviour(s), and moves to making 'some controlled escape' from particular situations might perhaps be useful to reduce the presence of such challenging behaviours. I know others will talk about 'demand avoidance' as being important too, but I'm cautious that this might not be an effective strategy in the longer term in helping people to build up 'resilience' to certain situations and environments.

But... I also think that 'escape' is not the whole story when it comes to challenging behaviours. I do still think that issues such as 'frustration' for example, can play a role. Also moving away from a purely 'behavioural' point of view, there is other evidence pointing to biology and physiology as being potentially involved in the presence of certain challenging behaviours. Fatigue? Yep, that's been mentioned (see here). Communication? Yep, that too (see here); particularly when verbal communication might be limited. And I'm also minded to mention that challenging behaviours can also be associated with things like the expression of pain (see here) that probably ties into the communication issue(s) too. In short, it's going to be complicated [3].

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[1] Hong E. et al. Topography and Function of Challenging Behaviors in Individuals with Autism Spectrum Disorder. Advances in Neurodevelopmental Disorders. 2018; 2: 206-215.

[2] Makrygianni MK. et al. The effectiveness of applied behavior analytic interventions for children with Autism Spectrum Disorder: A meta-analytic study. Research in Autism Spectrum Disorders. 2018; 51: 18-31.

[3] Rattaz C. et al. Challenging behaviours at early adulthood in autism spectrum disorders: topography, risk factors and evolution. J Intellect Disabil Res. 2018 May 24.

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Early Start Denver Model (ESDM) and autism: 2 year outcomes

"These results provide evidence that gains from early intensive intervention are maintained 2 years later. Notably, core autism symptoms improved in the ESDM [Early Start Denver Model] group over the follow-up period relative to the COM [community-intervention-as-usual] group."

Those were some of the conclusions reported in amongst the potentially very important results from Annette Estes and colleagues [1] looking at "the sustained effects of early intervention" following previous studies [2] specifically looking at the ESDM for children with an autism spectrum disorder (ASD). ESDM by the way, is a behavioural intervention model that draws on elements of Applied Behaviour Analysis (ABA) and is based on 'a relationship-focused developmental model'.

Authors reported that when examining follow-up data for some 39 children aged 6 previously included in a trial of ESDM, those that received intervention (compared to those in receipt of 'treatment as usual') "demonstrated improved core autism symptoms and adaptive behavior." These findings were present despite no significant group differences in intellectual functioning between ESDM and COM participants. Perhaps also important were the discussions that: "The two groups received equivalent intervention hours during the original study, but the ESDM group received fewer hours during the follow-up period."

As I've hinted before on this blog, parent-led interventions when it comes to autism have historically been met with varying degrees of success when experimentally tested (see here). By saying this, I'm not trying to poo-poo such efforts; merely that discussions about how early intervention for autism is the gold standard are all well and good, but exactly what form that early intervention takes has yet to be authoritatively decided bearing in mind the pluralisation of the label (see here). In more recent times, we have seen some slightly more optimistic results appearing with specific interventions in mind, as per previous preliminary results based on very, very early implementation of something like ESDM (see here) and the use of ABA possibly linked to those 'optimal outcomers' (see here). But there is still a lot more to do in this area of research before any big promises are made.

Insofar as the idea that intensive efforts in the early years might pay more cost-effective dividends as time goes on, I'm sure that a few eyes and ears will have been grabbed [3] by such a sentiment in these times of continued austerity and resources being squeezed. As I suggested in a previous post (see here) on the idea that parent training might be superior over parent education [4] when it comes to facets of autism, such squeezes to finances/resources might not necessarily translate great experimental results into great real-world outcomes without some blue-sky thinking about how such programmes can be delivered mindful of costs. Estes et al seem to suggest that 'early and intensive' might be eventually able to give way to 'less and sustained'.

One last thing: I'm minded to take readers back to the post I wrote concerning the paper by Barnevik Olsson and colleagues [5] and the idea that 'tackling' core autism symptoms is a noble cause but that one has to be mindful of all of the other comorbidity that can follow a diagnosis and can seriously impact on behaviour and development. What perhaps I would like to see a lot more of in lots of areas of intervention with autism in mind, is how said program/tool/schedule also impacts on comorbid features and whether those variables should be the more important factors related to outcome. Sort of like what has been talked about the dietary intervention and autism in mind...

Music: Paul McCartney & Wings - Live And Let Die.

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[1] Estes A. et al. Long-Term Outcomes of Early Intervention in 6-Year-Old Children With Autism Spectrum Disorder. J Am Acad Child Adolesc Psychiatry. 2015. April 28.

[2] Dawson G. et al. Randomized, controlled trial of an intervention for toddlers with autism: the Early Start Denver Model. Pediatrics. 2010 Jan;125(1):e17-23.

[3] Penner M. et al. Cost-Effectiveness Analysis Comparing Pre-diagnosis Autism Spectrum Disorder (ASD)-Targeted Intervention with Ontario's Autism Intervention Program. J Autism Dev Disord. 2015 May 5.

[4] Bearss K. et al. Effect of parent training vs parent education on behavioral problems in children with autism spectrum disorder: a randomized clinical trial. JAMA. 2015 Apr 21;313(15):1524-33.

[5] Barnevik Olsson M. et al. “Recovery” from the diagnosis of autism – and then?  Neuropsychiatric Disease and Treatment. 2015. 11: 999-1005.

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Annette Estes, Jeffrey Munson, Sally J. Rogers, Jessica Greenson, Jamie Winter, & Geraldine Dawson (2015). Long-Term Outcomes of Early Intervention in 6-Year-Old Children With Autism Spectrum Disorder J Am Acad Child Adolesc Psychiatry : 10.1016/j.jaac.2015.04.005

Optimal outcome and autism: a role for intervention?

Optimal outcome and autism.

Not here you don't @ Wikipedia 

I'm sure most people with an eye on autism research and practice will have come across this issue. The idea is that in amongst the various developmental trajectories which are being realised in these days of autisms over autism, there may be some children previously diagnosed with an autism spectrum disorder (ASD) who move outside of the diagnostic boundaries of the condition.

There is still lots of debate about the hows and whys of this scenario [1], and in particular, whether leaving the autism diagnostic label behind means everything about autism is left behind (see here). But certainly it is getting more and more difficult to dispute the fact that [some of] the signs and symptoms of autism are anything but static [2] and for some at least, the diagnostic label of autism might not be as lifelong as previously thought. Even the recent IMFAR conference saw some continued interest in this issue (see here).

Today I want to introduce a couple of papers which add to the literature on optimal outcome (OO) and autism, and in particular move away from just description to looking at what factors might potentially influence optimal outcome and specifically a possible role for intervention. You might consider this post an extension of an entry not-so-long-ago (see here) talking about the findings from Deborah Anderson and colleagues [3].

The paper by Nahit Motavalli Mukaddes and colleagues [4] (open-access) adds to the increasing literature on optimal outcome and autism with their assertion that: "High IQ and the development of communicative and language skills at an early age could be the most powerful factors contributing to an optimal outcome". The paper is open-access but a few points are noteworthy:

• Based in Turkey, this was a descriptive study of some 39 children "who previously received a diagnosis of ASD and who did not meet the criteria for any ASD in the final examination". Importantly, the authors held pretty detailed records on this group based on their initial assessment and diagnosis for autism including "an in-depth psychiatric examination of the child" which meant plenty of face-to-face contact accompanied by an analysis of medical history. 
• They also followed children "every 3-4 months" following their referral to an education program "inspired by Pivotal Response Training (PRT)". Most children followed PRT although 2 children "were able to attend ABA [Applied Behaviour Analysis] programs with frequencies ranging from as low as 8 hours per week up to the recommended 20 hours per week".
• Optimal outcome was specifically defined in this study based on the paper by Helt and colleagues [5] slightly modified. This included both abatement of autistic symptoms and IQ also being measured in the 'normal' range.
• Results: Well, aside from talking about communication and IQ as being potentially important factors related to optimal outcome: "The time from baseline to optimal outcome was 2.71 ± 1.76 years (range: 0.5-8 years)". The mean age at optimal outcome was round about 5 years old although there was some variation around these variables.

The authors provide quite a bit more detail on their study and why their results might be considered credible. I note they also suggest that comorbid medical disorders such as epilepsy were largely absent from this group and might "be another factor that influences outcomes". I'd chime in here and agree with that sentiment in light of what we know about the autism-epilepsy relationship (see here) and specifically the growing realisation that IQ or cognitive ability seems to be an important factor, confirmed by Jokiranta and colleagues [6]. The issue of intervention type and specifically whether something like ABA might play a role in optimal outcomes leads me on to the next study.

The paper by Alyssa Orinstein and colleagues [7] adds even further to the collected literature in this area, daring again to talk about what intervention might show involvement with a small group of optimal outcomers compared with those categorised as being high-functioning autism (HFA). Deborah Fein, the godmother of optimal outcome is also a co-author on this study.

So:

• "The current study examined intervention histories in 25 individuals with OO and 34 individuals with HFA (current age, 8-21 years), who did not differ on age, sex, nonverbal intelligence, or family income. Intervention history was collected through detailed parent questionnaires". 
• Those letters A-B-A were again mentioned in the results: "Substantially more children with OO than HFA received applied behavior analysis (ABA) therapy, although for children who received ABA, the intensity did not differ between the groups".
• Likewise that issue of comorbid conditions likely rears its head in this study too: "Children in the HFA group were more likely to have received medication, especially antipsychotics and antidepressants".
• One final quote to make at the risk of plagiarising the whole abstract: "There were no group differences in the percent of children receiving special diets or supplements".

ABA seems to do rather well in both the Mukaddes and Orinstein studies in relation to optimal outcome. I know that as an intervention it's not everyone's cup of tea, particularly with some rather chequered history, but there are 'moderates' out there who support the principles of ABA (see here) and the evidence base is not bad compared to lots of other interventions put for improving outcome in relation to autism. Without nailing my colours to any particular mast, I'd echo the sentiments of Orinstein et al and their suggestion of more to do - prospective studies - in this area. I might also draw your attention to other findings on PRT and ABA which might also be pertinent [8].

I'll also pass some comment on the use of the words 'special diets' when it comes to the Orinstein paper. I assume special diets includes things like the gluten- and casein-free (GFCF) diet and goes some way to addressing the notion that the optimal outcome group are not over-represented by those following such an intervention. I'd agree with that sentiment knowing what I think I know about this particular intervention. There is of course another way of looking at this insofar as there being best responders to something like a GFCF diet included in the optimal outcome group... but let's not get too carried away just yet.

'Optimal outcome' with autism in mind still has the ability to divide opinion. Reading again the editorial by Sally Ozonoff (see here) which accompanied the original Fein study and the description from Uta Frith on "a variant that is temporary" (see here) makes me realise that sometimes the bigger job of science is not actually doing and reporting the work, but altering long and often passionately held views and opinions as a result of that new knowledge. As intimated on a previous post talking about the economics of autism (see here), although I am not a great fan of talking about 'what autism costs' and the potentially unhelpful way that headlines like 'Autism costs '£32bn per year' in UK' can be construed, the findings from the Mukaddes and Orinstein studies should perhaps be the topic of further autism research. Not only because they might further highlight who is most likely to fall into the OO category and how they might arrive there but as per the paper by Barrett and colleagues [9] the onward implications to public finances with the aim to: "leverage investment in education and intervention to mitigate aspects of autism spectrum disorder that negatively impact individuals with the disorder and their families".

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[1] Bölte S. Is autism curable? Dev Med Child Neurol. 2014 May 20.

[2] Wodka EL. et al. Predictors of phrase and fluent speech in children with autism and severe language delay. Pediatrics. 2014; 131: e1128-e1134.

[3] Anderson DK. et al. Predicting young adult outcome among more and less cognitively able individuals with autism spectrum disorders. J Child Psychol Psychiatry. 2014 May;55(5):485-94.

[4] Mukaddes NH. et al. Characteristics of Children Who Lost the Diagnosis of Autism: A Sample from Istanbul, Turkey. Autism Res Treatment. 2014: 472120.

[5] Helt M. et al. Can children with autism recover? If so, how? Neuropsychol Rev. 2008 Dec;18(4):339-66.

[6] Jokiranta E. et al. Epilepsy Among Children and Adolescents with Autism Spectrum Disorders: A Population-Based Study. J Autism Dev Disord. 2014 May 7.

[7] Orinstein AJ. et al. Intervention for optimal outcome in children and adolescents with a history of autism. J Dev Behav Pediatr. 2014 May;35(4):247-56.

[8] Mohammadzaheri F. et al. A Randomized Clinical Trial Comparison Between Pivotal Response Treatment (PRT) and Structured Applied Behavior Analysis (ABA) Intervention for Children with Autism. J Autism Dev Disord. 2014 May 20.

[9] Barrett B. et al. Comparing service use and costs among adolescents with autism spectrum disorders, special needs and typical development. Autism. 2014 Jun 9.

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Mukaddes, N., Tutkunkardas, M., Sari, O., Aydin, A., & Kozanoglu, P. (2014). Characteristics of Children Who Lost the Diagnosis of Autism: A Sample from Istanbul, Turkey Autism Research and Treatment, 2014, 1-10 DOI: 10.1155/2014/472120



Orinstein AJ, Helt M, Troyb E, Tyson KE, Barton ML, Eigsti IM, Naigles L, & Fein DA (2014). Intervention for optimal outcome in children and adolescents with a history of autism. Journal of developmental and behavioral pediatrics : JDBP, 35 (4), 247-56 PMID: 24799263