Autism 'disclosure cards' and negative judgements?

I have to say that I initially felt slightly uncomfortable reading the study results published by Jillian Austin and colleagues [1] providing "preliminary validation for the use of autism disclosure cards in buffering negative judgment." Uncomfortable because, despite the fact that it is human nature for people to stop, stare and perhaps question something when it seems 'out of the ordinary', the idea that when children with autism specifically 'misbehave' in a public place their parents need to somehow justify their child's behaviour to a staring crowd of strangers seems a trifle unfair.

As is the experience of most parents, whether their child is diagnosed or not with autism or anything else, children are not always 'little angels' every time they are out and about ("no, it is not appropriate to start a public conversation about farting when one 'catches a whiff' of something in the shopping centre"). Most parents can usually get away with a nervous smile to any interested on-lookers (or nosey parkers) and that really should be the end of it. Of course, for some children under some circumstances, behaviour can sometimes go beyond just tantrums and onward can raise a few eyebrows but...

Austin et al started with the premise that parents of children with autism are "increasingly using disclosure cards to reduce negative perceptions" when out and about with their children to make "an invisible diagnosis apparent". They devised an experiment using "vignettes of a parent-child interaction in which the child was misbehaving and investigated the efficacy on 160 parents' perceptions." Disclosure cards were provided to some of the parent participants all of whom had at least one child aged between 6-12 years. Various factors covering "Maternal Skill Deficit and Negative Reaction" and "Sympathy for Mother" were analysed as a function of receipt of disclosure cards or not.

"Those who received the disclosure card reported significantly lower Maternal Skill Deficit and Negative Reaction to the Dyad and no difference in Sympathy for the Mother." In other words, making an 'invisible' diagnosis more visible seemed to have an effect in terms of views around 'it must the parent's fault that their child is behaving that way' (negative judgement) but did little when it came to empathising with the mother's position in that situation.

Austin and colleagues discuss how the 'invisibility' of autism and frames of reference - "people will evaluate and compare individuals to some perceived norm or standard" - in this case, so-called typically developing children, may be driving forces underlying those negative judgements from others about children on the spectrum and their parents. I can't quibble with this line of thought or what impact it might have on children and their parents (and other significant others). But it strikes me that in these days of increased numbers of children being diagnosed with autism (see here) - indeed the numbers just keep on growing - and accompanying high-profile campaigns to raise awareness about autism, movement towards the idea that every parent has to 'identify' their child as being on the autism spectrum as and when they, pardon my French, 'fart the wrong way' seems to place too much emphasis on the child and parent and not enough on their fellow citizens and their own understanding and reactions.

OK, I get that people have busy lives and that outside of media depictions (see here), most people wouldn't typically ask 'could it be autism?' when a child has a 'meltdown' in a public spot. I also get that under some circumstances, making particular groups of people aware of a person's autism might be a good thing as per contact with law enforcement agencies for example. The question however of whether strangers really need to be given quite sensitive information about a person and 'their diagnosis' just because they (the stranger) 'can't deal with a particular situation' strikes me as being more than a little one-sided...

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[1] Austin JE. et al. Influencing Perception About Children with Autism and their Parents Using Disclosure Cards. J Autism Dev Disord. 2016 May 30.

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Austin JE, Zinke VL, & Davies WH (2016). Influencing Perception About Children with Autism and their Parents Using Disclosure Cards. Journal of autism and developmental disorders PMID: 27241346

Parent training vs parent education for disruptive behaviour in autism

I have to say that historically I've never been a great fan of the words 'parent training' when applied to the autism spectrum disorders (ASDs). For me, the idea that parents of children with autism need 'training' to parent their child with autism always seemed a little condescending with overtones harking back to the bad old days of 'blame the mother' [1].

My attitude to the idea of parent training has however softened in recent years on the back of some peer-reviewed evidence suggesting that little things like praise for example, can potentially make a difference for some on the spectrum (see here). A shocker, I know. The idea also that early parent-led intervention might, after a slightly shaky start, show some benefits to those at-risk of autism (see here) has also played a role in changing perceptions, albeit with caveats including my not being misconstrued as suggesting that parents of children with autism don't praise their children enough.

I was therefore interested to read the paper published by Karen Bearss and colleagues [1] looking at parent training versus parent education when it comes to tackling disruptive behaviours associated with autism. Disruptive behaviours casts a wide net when it comes to potential definition (I assume overlapping with some of those 'challenging behaviours' that seem to be mentioned from time-to-time in the autism research literature) but for the purposes of the Bearss study, the outcome measures give us a flavour of what was being examined: "the Aberrant Behavior Checklist–Irritability subscale (range, 0-45) and the Home Situations Questionnaire–Autism Spectrum Disorder (range, 0-9)."

Using a randomised-controlled study design, where 89 parents of children with autism received parent training that "provided specific strategies to manage disruptive behavior" and 91 parents received parent education sessions that "provided information about autism but no behavior management strategies", researchers followed families for 24 weeks. Comparisons between baseline scores and endpoint (24 week) scores indicated some potentially interesting results based on those schedules previously described alongside a blinded clinician who "rated the Improvement scale of the Clinical Global Impression [CGI] (range, 1-7)."

As per another write-up of the Bearss study (see here): "All the children showed improvements." There were however some potential differences between the parent education vs. parent training groups suggestive that parent training might trump just education. With analysis based on the the groups as a whole: "the Aberrant Behavior Checklist–Irritability subscale declined 47.7% in parent training... compared with 31.8% for parent education. The Home Situations Questionnaire–Autism Spectrum Disorder declined 55%... compared with 34.2% in parent education." Further, those 'objective' clinician reports based on the CGI also showed some potentially important differences: "The proportions with a positive response on the Clinical Global Impression–Improvement scale were 68.5% for parent training vs 39.6% for parent education." A statistically significant difference.

Ergo, parent education alone could be useful but add in some parent training and things might ramp up quite a bit in terms of tackling disruptive behaviours in cases of autism as per other findings [3]. In case you'd like a few more details about the parent training program used by Bearss et al, I might refer you to another publication [4] (open-access) on this topic.

There are quite a few implications for the Bearss results. Not least is the idea that 'educating' parents about autism might not be enough in terms of giving them the tools to cope with and tackle disruptive behaviour as and when it occurs. Providing direction and those all-important strategies to manage disruptive behaviour is important and may very well reflect on a child's behaviour and development bearing in mind that there may be lots of reasons for disruptive behaviour, not all just behavioural in nature.

But such additional parent training does have cost and resource implications. The parent training method employed by Bearss et al covered "11 core, 2 optional sessions; 2 telephone boosters; 2 home visits" in 24 weeks. Multiply all that by the increasing number of children receiving a diagnosis of autism and well, one can imagine what that might mean in these times of continued austerity. By saying all that, I'm not opposing such intervention, merely pointing out a stark reality to quite a bit of autism research: results may show improvement in behaviour and a better quality of life but is it a practical and affordable intervention? [5]

To further prove to you that I'm not trying to poo-poo the idea of parent training, there are potential solutions on the horizon that may help the real-life delivery of such programmes. Take for example the increasing focus on telemedicine and the results from Vismara and colleagues [6] for example, on the use of "a video conferencing and self-guided website to provide parent training in the homes of children with ASD." I don't think telemedicine has quite reached the heady heights of mainstream healthcare provision, but there are quite a few moves in the peer-reviewed domain towards such remote delivery of healthcare with autism in mind [7].

And whilst I have your attention, I might also refer you to the paper by Wendy Machalicek and colleagues [8] (open-access) covering parent training where intellectual disability in diagnosed, and issues and features perhaps overlapping into autism...

Music: The Fall and Hit the North.

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[1] Waltz MM. Mothers and Autism: The Evolution of a Discourse of Blame. AMA J Ethics. 2015 Apr 1;17(4):353-358.

[2] Bearss K. et al. Effect of Parent Training vs Parent Education on Behavioral Problems in Children With Autism Spectrum Disorder. JAMA. 2015; 313: 1524-1533.

[3] Kaat AJ. & Lecavalier L. Disruptive behavior disorders in children and adolescents with autism spectrum disorders: A review of the prevalence, presentation, and treatment. Research in Autism Spectrum Disorders. 2013; 7: 1579-1594.

[4] Bearss K. et al. Toward an exportable parent training program for disruptive behaviors in autism spectrum disorders. Neuropsychiatry (London). 2013 Apr; 3(2): 169–180.

[5] 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.

[6] Vismara LA. et al. Preliminary findings of a telehealth approach to parent training in autism. J Autism Dev Disord. 2013 Dec;43(12):2953-69.

[7] Hepburn SL. et al. Telehealth delivery of cognitive-behavioral intervention to youth with autism spectrum disorder and anxiety: A pilot study. Autism. 2015 Apr 20. pii: 1362361315575164.

[8] Machalicek W. et al. Training Parents of Children with Intellectual Disabilities: Trends, Issues, and Future Directions. Current Developmental Disorders Reports. 2015. April 9.

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Bearss K, Johnson C, Smith T, Lecavalier L, Swiezy N, Aman M, McAdam DB, Butter E, Stillitano C, Minshawi N, Sukhodolsky DG, Mruzek DW, Turner K, Neal T, Hallett V, Mulick JA, Green B, Handen B, Deng Y, Dziura J, & Scahill L (2015). Effect of Parent Training vs Parent Education on Behavioral Problems in Children With Autism Spectrum Disorder: A Randomized Clinical Trial. JAMA, 313 (15), 1524-1533 PMID: 25898050