This is the first of a series of blog posts on a topic that will be familiar to many in the autism community – ‘challenging behaviour’. Certainly as an autistic person, a carer to autistic people and a friend to many others I have gained lots of experience in this area. I plan to cover conceptualisations and definitions of challenging behaviour and how these definitions have changed over the years, how communication can be a factor and how our conceptualisations impact our responses to the behaviour.
Challenging behaviour is a term that generally gets reserved for individuals who are part of disempowered populations (e.g. autistic people or people with learning disabilities). I do not think this is fair as often the so-called challenging behaviour has been preceded by some behaviour from the carers or service provider that is equally challenging to the autistic individual. I therefore will (in a later post) propose a new definition of ‘challenging behaviour’ which will incorporate the behaviour of the service providers.
Prevalence of challenging behaviour amongst autistic people
Apparently challenging behaviours are common amongst people who are autistic. There is a wealth of research that concludes this, however I am cautious of the prevalence figures I read. Here’s an example of why caution is needed: Matson, Wilkins and Macken (2009) reported that up to 94% (!!!) of children with autism display at least one challenging behaviour. In their study they use a scale called ‘Autism Spectrum Disorder – Behaviour problems for children’. It includes items such as repeated and unusual vocalisations or body movements, or unusual play with objects. If you define challenging behaviour as behaviours that are ‘unusual’ then of course you would expect a high prevalence rate in autistic people. We are a minority neurotype and our behaviour often seems unusual to NT observers but that alone is not enough reason to describe it as challenging in my view. This is just one example of researchers making judgements about autistic people from their (usually) NT perspective, there are many other similar studies. Definitions of challenging behaviour vary widely and most are flawed.
Another reason why prevalence figures about autism and challenging behaviour are extremely unreliable is because we don’t know who all the autistic people are. Any stats where you see ‘x% of autistic people’ need to be taken with a pinch (huge bag?) of salt. Those of us who know we are autistic are a pretty biased sample of autistic people. We are more likely to be white males for a start, if we are female we probably got diagnosed late in life as I did. Anyway, I digress. Back to challenging behaviour…
Despite me being critical of much of the research on prevalence of challenging behaviour amongst autistic populations, it is logical that there would be more than there is amongst the non-autistic population. Challenging behaviour is related to stress (Gerland, 2013, Milton 2016). It is very stressful to be autistic in a society that has developed to suit the non-autistic population. Stress amongst autistic people is likely to be for different reasons and the frequency and intensity is different which makes it difficult for a non-autistic person to empathise. As an autistic person myself, I have an almost constant underlying level of stress, probably from sensory overload and all the extra processing my brain is doing so something that may seem trivial to an observer can be enough for me to meltdown or snap. Plenty of non-autistic people reach this tipping point too, perhaps not as often, but because other NTs usually can empathise with the reasons for their stress they don’t attract the label of challenging.
My next post is going to be about the label ‘challenging behaviour’ and how its use has changed over the years.
Gerland, G. (2013). Secrets to Success for Professionals in the Autism Field: An Insider’s Guide to Understanding the Autism Spectrum, the Environment and Your Role. Jessica Kingsley Publishers.
Matson, J. L., Wilkins, J., & Macken, J. (2009). The relationship of challenging behaviors to severity and symptoms of autism spectrum disorders. Journal of Mental Health Research in Intellectual Disabilities, 2(1), 29-44.
Milton, D. (2016) 10 rules for ensuring people with learning disabilities and those who are on the autism spectrum develop ‘challenging behaviour’: …And maybe what to do about it. United Kingdom: Pavilion Publishing and Media