Surgery following self-injurious behaviour

Discussions on self-injurious behaviour (SIB) or auto-aggression are not normally for the faint-hearted.

Indeed, as I intimated on a previous post on SIB and autism, when such behaviours are witnessed in children and young adults - even older adults, one does wonder what the effects might be not only on the person themselves but also on a parent or a sibling as they watch their own flesh and blood banging their head on a wall or pulling their hair out or trying to gouge their eyes out. I can't put myself in their place without thinking of how it might affect me if it were one of my brood showing such behaviours.

In this post I'm drawing your attention to a paper by Robert Sisk and colleagues* (open-access) on surgical outcomes following the repair of detached retinas in young adults with intellectual disability (ID) and SIB. Due credit should go to Harold Doherty of the Facing Autism in New Brunswick blog for bringing this paper to my attention. I'm not going to deconstruct the paper in any statistical sense because the paper speaks for itself in terms of observations and outcomes of those nine patients described. Some of the language used is also a little too technical for me.

The long-and-short of it was that in a largely non-verbal subject group, where autism is mentioned as being some part of 6 cases, the outcome of surgery for detached retina is reported. I just want to clarify one thing about retinal detachment, we aren't talking eye-balls hanging out of eye-sockets or anything like that, but rather when the retina comes away from the support tissue. Nevertheless it is a medical emergency and can have profound consequences if not treated in time.

There are a few points and quotes from the Sisk paper worthy of some comment.

• Surgery was reported to be successful in all cases but that's not to say retinal detachment (RD) did not occur more than once for a few of the participants and at least partially because SIB didn't just miraculously stop following the first episode. 
• "RDs from self-injurious behaviors were observed during puberty, coinciding with the onset or worsening of self-injurious behaviors". Ah yes, puberty and the wonders it brings for everyone. Indeed, what puberty can mean to those with autism and/or intellectual disability for example (see here).
• "Self-injurious behaviors also worsened when visual performance declined and served as an indicator to family members and health care providers to investigate for RD". This is an important point about SIB. It kinda tells us that there is nearly always a reason for SIB and one shouldn't for example just assume that it's naturally part and parcel of autism or ID presentation (just like another comorbidity). It also suggests that those findings by Ikeda and colleagues on ophthalmologic disorder and autism (40%) are to be taken very, very seriously save any more health inequality appearing.
• "The management of RD in patients with severe cognitive impairment and persistent self-injurious behaviors was challenging". Indeed in some cases things did not stop at RD in terms of both repeat episodes and the onset of other symptoms such as glaucoma as a result of the long-term use of silicone oil tamponade as part of the treatment.

Reiterating my starting sentence to this post on SIB not being great dinner party conversation, I'd like to think there are some lessons that could be learned from papers like the one from Sisk. That for example, autism is a very, very heterogeneous spectrum with lots of shades of presentation is an important point that should not be forgotten. That those on the more 'severe' end of the spectrum might be at greater risk of comorbidity as a result of things like SIB - and importantly not always able to communicate the reasons why - should automatically mean a greater focus on health screening and the potential outcomes from things like SIB (not just the eyes and vision). It's not that we might not have clues as to at least some of the circumstances around SIB**.

Presenting SIB as potentially occurring in cases of autism*** should perhaps also be an important part of the autism awareness message. Alongside other physical comorbidity which might also reflect on behaviour (see here and here), and where it can lead (see here), adding SIB to the long list of potential correlates to autism can only serve to heighten awareness of the importance of these factors and how we might go about dealing with them to improve quality of life. I'll being continuing this chatter about the 'ESSENCE' of comorbidity in a post next week...

To finish and without making light of the topic matter covered today, I believe it is customary to celebrate Star Wars day (May 4th) in a particular way... and we have the late Margaret Thatcher to thank for this???

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* Sisk RA. et al. Surgical Outcomes Following Repair of Traumatic Retinal Detachments in Cognitively Impaired Adolescents With Self-Injurious Behavior. Journal of Pediatric Ophthalmology and Strabismus. 2013; 50: 20-26.

** Duerden EG. et al. Risk factors associated with self-injurious behaviors in children and adolescents with autism spectrum disorders. J Autism Dev Disord. 2012; 42: 2460-2470

*** Richards C. et al. Self-injurious behaviour in individuals with autism spectrum disorder and intellectual disability. J Intellect Disabil Res. 2012; 56: 476-89.

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Sisk RA, Motley WW 3rd, Yang MB, & West CE (2013). Surgical outcomes following repair of traumatic retinal detachments in cognitively impaired adolescents with self-injurious behavior. Journal of pediatric ophthalmology and strabismus, 50 (1), 20-6 PMID: 23061560