Saturday, 9 April 2011

Self-injurious behaviour and autism

Self-injury, auto-aggression, self-mutilation call it what you will, can be a relatively frequent occurrence in children with autism spectrum conditions, as in other developmental and intellectual conditions. The Research Autism entry on self-injurious behaviour (SIB) [behavior to our US cousins] suggests that such behaviour can take many forms; ranging from head-banging to hair pulling to eye gouging.

Having only witnessed such behaviour once or twice during my research contact with children with autism, I can testify how unnerving such behaviour can be and how the sight of a child in particular, hurting themselves really can be quite distressing. I cannot begin to imagine how a mother or father (or sibling) feels when they see this type of behaviour from their child/brother/sister over and over again. Might it be a significant contributor to stress?

In this post, I want to look at some of the research and dialogue on SIB and autism; in particular, looking at the antecedents, outcome and 'management/coping' strategies. I am focusing on 'self-aggression' rather than aggression directed towards others in this post. I stress as always that I am not offering any advice on SIB management, merely describing what the literature seems to be telling us.

I think most parents will have seen some degree of SIB in their child at some point in their development, irrespective of the presence of autism. Frustration and irritability are generally seen as the main precursors - why can't I have that toy, food, DVD [insert other item/thing/concept here] coupled with an immaturity in expressing such emotions through social or communicative mediums.

What this tells us is that certain degrees, or episodes of SIB are a part of growing up. Potentially also it gives us a developmental clue as to why such behaviours might be seen in autism, given that autism is not a failure to develop but rather a slightly different course of development. It also suggests that there may be many different routes to SIB and that it is the frequency and extensiveness of SIB presentation that perhaps distinguishes such pathology in autism or other conditions.

So what causes SIB in autism? Well, how long have you got. The Autism Research Institute (ARI) offer quite a comprehensive list of potential reasons for, and antecedents to, SIB and autism (available here). Outside of possible genetic explanations, there are several interesting issues raised, a few of which I will touch upon here.

Severity of autism is a prominent risk factor for SIB. More severe cases of autism are more likely linked to things like greater dependency on caregivers and less frequent acquisition of functional daily living skills - in short, less day-to-day independence. Knowing what happens to children when, for example, they enter their 'terrible twos' it is perhaps understandable that for a child with severe autism, such a lack of 'independence' could be a significant issue.

Communication issues also tie into increasing severity. Where for example, a child has only limited verbal or non-verbal skills the question needs to be asked, how does that child communicate wishes, preferences and intentions?

Communication, whether verbal or non-verbal, is therefore perhaps an important issue for SIB. Place yourself in a child's shoes: suppose you came back to your room and were looking for your favourite toy or book and realised it was not where you last put it. How would you communicate your query / desire / displeasure if verbal language was absent? It will be interesting to see what becomes experimentally of the recent discussions on the use of assistive technology such as the various Apple equipment for communication in autism and further towards SIB.

The sensory issues associated with autism are also a potential point of interest to SIB. I have blogged previously about hearing and autism and the issue of hyperacuity. Where people with autism have been able to describe such experiences, on some occasions it sounds very much to me as though such hyperacuity might fall somewhere between irritation and downright pain. Again same scenario as above - how do you communicate those feelings without language or with limited language?

Since we are talking about pain, it is perhaps also worth mentioning here about a possible relationship between physical discomfort and SIB. Communication again - how does a non-verbal person communicate physical discomfort or pain? Toothache for example. You might try and pull the tooth out yourself. Those wisdom teeth pushing through - how do you tell someone they hurt? Headache (whether tension-type, migraine or other) is another example and perhaps more complicated given that there is no objective way of determining a headache - at least outside of a hospital or laboratory. Bang your head perhaps to try and make it go away or indicate that pain in your head?

Other physical discomforts have been discussed in the literature also. Functional bowel problems such as constipation have been linked to incidence of SIB (and reduced when treated accordingly). The point is that the many complicated issues potentially attached to autism make it a likely candidate for the presentation of SIB.

So what to do about SIB?

Here I think we need to be very careful. The natural reaction might be just to try and treat the SIB as a 'challenging behaviour'. But wait a minute. What if SIB is not just another challenging behaviour - what if it is a means of communication?

This is where the detective work starts. Looking at things like the onset of SIB, the frequency and the duration. If SIB starts when a child changes school for example or when they reach that funny little point in life called puberty, is it a case of reaching for the anti-challenging behaviour meds straight away?

I am not saying that all SIB should be just passed over as a communication issue or a sensory issue when it comes to possible treatment options because, whilst being impractical for the child and their parents, this may also put the child at some significant risk of hurting themselves permanently. The suggestions are to look closely first and see what is around - devise a checklist of possibilities (teeth, head, tummy, cold, fever, etc)  and, as far as possible, rule out the simplest explanations first before moving on to the more complex issue of environment (lights, sounds, that singer on the TV with the screechy voice, etc) and finally ending on other potential causation.

I did intend to talk about the possible biological implications of SIB related to things like reduced pain sensitivity and that wonderful opioid-excess hypothesis and the use of naltrexone. I have decided not to on this occasions because of the risk of 'medicalising' SIB too quickly.