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There is a wealth of information doing the rounds at the moment, which seeks to inform and educate about autism. From social media viral clips, to new TV drama, there is a flurry of activity around increasing our understanding of this condition. Given that there are an estimated 700,000 people in the UK with a diagnosis of autism, which assumes this condition touches the lives of some 2.8 million people, its about time.
Around a third of people with learning disability may be autistic. However, for many years, it was often assumed that the presence of traits we now believe to be autistic could be attributed to developmental delay or to a lack of communication skills. Where many people with learning disability were institutionalised, the repetitive, insular and withdrawn behaviours were believed to be due to this lack of stimulation or social isolation. Although this was likely to have been true, the identification of autism in this group was difficult and often lacking.
When it gets too much
If you work with people who have profound disability, you may have found that they experience crisis states where their ability to remain calm and settled is compromised. Where communication is difficult, the onset of a crisis can take staff unaware and quickly escalate into something that challenges everyone. Yet if we are tuned in to the possible causes of such distress, we might be able to avoid things getting to this.
Sensory experience for people with autism can relate to hypersensitivity, where sensations that we might barely notice can be felt extremely. Dr Temple Grandin, the US professor with autism who has been central in promoting understanding of the condition, describes light touch feeling “like a cattle prod”. Where senses are overloaded, behaviour might manifest itself in spinning, flapping or hitting the ears or eyes. These actions have the effect of causing a sensation to help block out the overload in another area, sometimes to extreme degrees.
At the other end of the scale, hypo-sensitivity is where senses are dulled, so the person might seek out loud music, noisy machinery or create sound by banging or screaming. They might hug themselves tightly, pull clothing tight (perhaps pulling their arms inside their sweater) or harm themselves to produce heightened sensation.
Seek out help
Either of these manifestations can be distressing and harmful to the individual and those around them, so you should consider ways to offer support. There is a lot of information around to suggest strategies, or speaking to a specialist nurse or occupational therapist can be beneficial. In hypersensitivity, be considerate of lighting, volume on the TV or radio, or think about the ‘white noise’ of heaters, domestic appliances or fluorescent lighting. In hypo-sensitivity, think about how deep pressure or very physical activity might provide the level of sensation the person is seeking without them resorting to potentially damaging self-stimulation.
To try to understand the way the world sounds, feels, looks and smells for a person with autism, have a look at this video https://www.youtube.com/watch?v=plPNhooUUuc This person is able to describe their experience; remember the people you are supporting may not.
More resources can be found here http://www.autism.org.uk/about/behaviour/sensory-world.aspx from the National Autistic Society’s excellent website.
Ginny Tyler – QCS Learning Disability Expert Contributor