Ann Memmott’s piece on “Useful New Autism Info for Care Settings” lists four great resources on accommodating autism in care settings, including two of our favorites: “It’s Not Rocket Science” and “Experience of Trauma and PTSD Symptoms in Autistic Adults”.
This is a list of useful research papers and Commissioned documents that have changed how we think about autistic people, and how we respond to their distress and their brain events.
These resources are much about sensory load, as they should be.
“Small changes that can easily be made to accommodate autism really do add up and can transform a young person’s experience of being in hospital. It really can make all the difference.”
“Right from the start, from the time someone came up with the word ‘autism,’ the condition has been judged from the outside, by its appearances, and not from the inside according to how it is experienced.”
Donna Williams, (1996:14)
This report introduces autism viewed as a sensory processing difference. It outlines some of the different sensory challenges commonly caused by physical environments and offers adjustments that would better meet sensory need in inpatient services.
We have five external senses and three internal senses. All must be processed at the same time and therefore add to the ‘sensory load’.
Understanding the sensing and perceptual world of autistic people is central to understanding autism.
Autism is viewed as a sensory processing difference. Information from all of the senses can become overwhelming and can take more time to process. This can cause meltdown or shutdown.
Source: “It’s Not Rocket Science” – NDTi
One of the most important findings is that most autistic people have significant sensory differences, compared to most non-autistic people. Autistic brains take in vast amounts of information from the world, and many have considerable strengths, including the ability to detect changes that others miss, great dedication and honesty, and a deep sense of social justice. But, because so many have been placed in a world where they are overwhelmed by pattern, colour, sound, smell, texture and taste, those strengths have not had a chance to be shown. Instead, they are plunged into perpetual sensory crisis, leading to either a display of extreme behaviour – a meltdown, or to an extreme state of physical and communication withdrawal – a shutdown. If we add to this the misunderstandings from social communication with one another, it becomes easier to see how opportunities to improve autistic lives have been missed.
If we are serious about enabling thriving in autistic lives, we must be serious about the sensory needs of autistic people, in every setting. The benefits of this extend well beyond the autistic communities; what helps autistic people will often help everyone else as well.
Finally, the involvement of autistic people in reviewing and changing the sensory environment will support the identification of things that are not visible or audible to their neurotypical counterparts. We strongly encourage this wherever possible.
I have written elsewhere about what I refer to as ‘the golden equation’ – which is:
Autism + environment = outcome
What this means in an anxiety context is that it is the combination of the child and the environment that causes the outcome (anxiety), not ‘just’ being autistic in and of itself. This is both horribly depressing but also a positive. It’s horribly depressing because it demonstrates just how wrong we are currently getting things, but positive in that there are all sorts of things we can do to change environmental situations to subsequently alleviate the anxiety.
it is so crucial that all environments to which your child has frequent access are assessed from a sensory perspective so that he has the least risk of anxiety. Very often within the sensory world, what seems so minor to others can be the key in terms of what is causing an issue for your child.
All these examples show that sensory issues play a massive part in the day-to-day living experiences of your child. It is imperative that this is taken into account in as many environments as possible, in order that anxiety risk is minimized.
Sensory needs are an absolute necessity to get right if your child is to feel comfortable (literally and figuratively) at school,
sensory pleasure (which could be viewed as almost the opposite feeling to anxiety) can be one of the richest, most delightful experiences known to the autistic population – and should be encouraged at any appropriate opportunity.
Research to date suggests that individuals with autistic spectrum disorder (ASD) may be at increased risk of developing post-traumatic stress disorder (PTSD) following exposure to traumatic life events. It has been posited that characteristics of ASD may affect perceptions of trauma, with a wider range of life events acting as possible catalysts for PTSD development.
Autistic adults experienced a wide range of life events as traumatic, with over 40% showing probable PTSD within the last month and over 60% reporting probable PTSD at some point in their lifetime. Many of the life events experienced as traumas would not be recognized in some current diagnostic systems, raising concerns that autistic people may not receive the help they need for likely PTSD.
Source: Experience of Trauma and PTSD Symptoms in Autistic Adults: Risk of PTSD Development Following DSM‐5 and Non‐DSM‐5 Traumatic Life Events – Rumball – 2020 – Autism Research – Wiley Online Library