We need to understand what repetitive movements might mean to the individual with autism, not simply try to stop them, says Robyn Steward.
Not long ago, I was in California at a lecture given by a psychiatrist on autism, the lecturer asked: “Who has ever met someone with autism who likes to flap?” I raised my hand and said: “I do, and I know others do too”. Then he told the audience that people with autism who like to flap, do so because they liked doing something that they had been told not to do. This does not match with most people on the spectrum’s tendency to like following rules.
I knew anecdotally that stimming or “repetitive routine behaviour” – the formal term used to describe repetitive behaviours such as hand flapping, rocking and leg shaking – is more complex and individual than the psychiatrist had implied.
There is a disparity between how autistic people describe their experiences of stimming and how many professionals regard it; some professionals try to get adults and children to stop stimming. But many people find this very hard to do. While it is often argued that stopping stimming would help a person to socialise better, this might in reality increase the pressure on the person with autism, meaning they are unable to cope with the situation.
Why do people stim?
We need to understand the individual, why they stim and the circumstances and consequences of the stimming. There are situations where stimming may need to change, for example if the behaviour is self-injurious or injurious to others, or if it stops the person engaging with tasks or prevents others around them engaging in tasks. Whilst there may need to be a change in behaviour, this must meet the needs of the individual. It is never enough just to tell the person to stop stimming without understanding their perspective. It should never be about someone wanting that person to “look more normal” or because they are embarrassed by that person’s stimming.
While people like myself can usually help others understand, the autism spectrum is very wide and there are many individuals who are unable to speak or are not self-aware or eloquent enough to explain why they stim.
With this in mind on that evening in California, I went back to my hotel room and produced a survey on one of the online survey sites. I posted it around the internet and went to bed. Nine hours later, I had 100 responses, which is testament to how important this issue is to people within the autism community and how much they want their voices heard.
Types of stimming
I asked people about the type of stims they had and I drew pictures of some of the ones they described (see the pictures on these pages). A lot of them engaged in more than one type of stim. The types of stim they described ranged from behaviour neurotypical people may use to stim, such as clicking the top of a pen, to very individual stims such as starring at a lava lamp on a key chain. This is important because the line as to what is and what is not a stim is blurred, so someone you teach or support might be stimming without you realising they are doing it, or what they need to communicate.
It’s a sign
People who responded to the survey were asked to give their reasons for their stimming (they could provide more than one reason each). The top three responses were to reduce anxiety (72 per cent), to calm down (66 per cent) and overstimulated senses (57 per cent).
In terms of school life, dealing with anxiety is very important and the triggers of anxiety can be small and very different for those on the autism spectrum to neurotypical children. When you are calm, it is usually easier to learn; when you are overstimulated with sensory information, it can be difficult to process new information. So, suppose a young person were to use a stim and be stopped from doing so for one of the top three reasons above, what would happen? Perhaps they would be unable to cope in the situation, or perhaps they would develop a coping strategy that was something other people did not want them to do.
The survey also revealed a significant number of people who stimmed to communicate excitement (28 per cent), and others who use it to communicate emotions such as happiness (18 per cent). So, stimming can be used for positive emotions too and as communication, which is obviously very useful to know if you are supporting someone who stims. Given that many people on the autism spectrum do not read body language or communicate with it very well, it might be possible to interpret stimming and gain an insight into what that person is feeling.
As part of my survey, I asked people if they enjoyed stimming. 50 per cent said that they did enjoy stimming, 30 per cent said they sometimes enjoyed stimming and 9 per cent said they did not enjoy it. Interestingly, 73 per cent of people in the survey had been asked not to stim, which is perhaps a reflection of how other people view stimming.
All of this underlines the need to understand each individual with autism as best we can, so that we can develop support which fits their specific needs.
Self-worth
There also needs to be some thought given to ensuring people can feel proud of who they are. Suppressing stimming to please others might, I feel, send a message to a person that somehow they have been born bad or inadequate. Many people on the spectrum view autism as part of themselves and unremovable. If stimming is a part of their autism, then that is part of their person too. So, by telling these people that they should stop stimming, we might, in effect, be sending them the message that they are in some way bad or inferior, especially in circumstances where nobody is injured or adversely affected by their stimming.
If a teacher of your child were to say to you “I like this about ‘X’ but I think they should change this or that about their personality because it would make them more like everybody else in the class”, how would you feel about it?
In general, I think we should be educating all young people to accept differences and, specifically, to understand that some people stim (including those who are not autistic) and some people don’t. For those who do, though, it can be a useful clue to help us understand how they are feeling and therefore to help us be a better friend, sibling, parent or teacher for them. Isn’t this what being a good human being is about?
Author: Robyn Steward
autism Stimming Robyn Steward
autism Stimming
Robyn Steward
