Sunday April 2 is World Autism Awareness Day, which in the UK also marks the end of National Autism Awareness Week. The aim is to make sure everyone understands what autism is. For many children and adults with autism, their lives are made harder by a general lack of understanding about what autism is and the simple measures that can be put in place in order to support them.
We spoke to Dr Phoebe Caldwell, expert in Intensive Interaction and the ways in which this can benefit the lives of those with autism. Phoebe has been working with children and adults on the autistic spectrum for many years. She teaches management, therapists, parents, teachers, advocates and carers, both nationally and internationally as well as being employed by the NHS, social services and community and education services to work with individuals they are finding it difficult to provide a service for. In 2010, she was awarded the Times/Sternberg Active Life Award for work on autism and contribution to the community, and in July 2011 Bristol University awarded her an Honorary Doctorate of Science for communication with people with autism.
Phoebe has written a number of books on the topic, including The Anger Box: Sensory turmoil and pain in autism, as well as creating training films. This year, she is giving a masterclass on Intensive Interaction at the Learning Disability Study Day in Leeds.
What would you say are some of the key difficulties people with autism can face?
The first thing to remember is that every child is different, and their difficulties will depend on what affects them as an individual. On a wider scale, there are two overarching difficulties those with autism face. The first comes from society, the second from the environment they are in.
There is widespread and total failure to understand that those with autism experience sensory difficulties, or that these even need to be considered. These sensory difficulties are what cause distress to those on the autistic spectrum, affecting their behaviour and wellbeing. The Anger Box: sensory turmoil and pain in autism takes a more in depth look at these sensory difficulties. There is a general ignorance in society of the role sensory difficulties face, including a lack of knowledge in education and by parents. In most cases, the focus is on the behaviour of those with autism and what can be done to control and contain this, rather than an examination of what the underlying causes of this are.
The environmental surroundings can dramatically affect those on the autistic spectrum; there is a lack of understanding about how architecture can help or hinder. Strip lighting is prevalent in schools and public areas, whilst these same areas often lack acoustic panelling to quieten noises. These problems can lead to a sensory overload. On a more individual basis, recognition of the specific sensory issues of a person can make a difference in the home environment, but again these are often unknown.
Can you tell me about the development of the Responsive Communication approach?
The Responsive Communication approach developed from an understanding of the need for a combined approach to support those with autism. Many autistic people struggle to use speech to communicate, whilst at the same time suffer from sensory difficulties. Responsive Communication combines reduction of those stimuli which are difficult to process through attention to sensory sensitivities with increasing those that do not require elaborate processing, using Intensive Interaction.
It involves three elements:
• Focusing on how a person is experiencing sensory inputs, identifying which cause distress and which are more positive, so these can be taken into account.
• To deal with the environmental pressures, creating an autism-friendly environment by reducing those inputs that are causing distress whilst emphasising those which do not can completely change a person’s behaviour.
• Using Intensive Interaction to respond to a person’s body language and aid communication. This means mirroring then developing the body language they use to communicate with themselves.
How do you put this into practice?
When I go meet and assess a child with autism, there are several aspects of responsive communication to implement. Upon arrival, you must avoid invading personal space as this can instantly damage the relationship. I immediately make use of Intensive Interaction in order to communicate. I also test their sensory experiences. If the child flinches at something, it is a clear indication that this is problematic for them, for example a touch, a colour or a sound. By doing this, a long, convoluted assessment is replaced with a more personal relationship that can give clear and simple answers.
How do you feel this has made a difference to those you have worked with?
It has made a phenomenal difference to those I have worked with. To give you one example: I visited a six year old boy who had extreme autistic behavioural difficulties. He wouldn’t go out, eat, interact with people or stick with activities. I sat down with him and a lightbulb that casts 16 different colours over the surrounding area. When the light became blue, he immediately settled. He made eye contact with me, and engaged with his parents. Blue was obviously a safe colour to him. A colleague told me about how using a safe coloured plate had helped a child they knew eat. I suggested to his family that they used a blue plate, and that he wore a blue jacket to go outside. Just doing these small things, based upon his reaction to my approach, made a real difference to what he was able to do and his behaviour.
How can knowing their specific difficulties be used support those with autism deal with the sensory overload?
For many on the autistic spectrum, the sensory overload they often face can be moderated on an individual basis after having used Responsive Communication and understanding their specific needs. BOSE acoustic noise reduction headphones can help block out the unnecessary noises, whilst tinted glasses can create a safer visual perspective. Squease vests use pressure to calm those with autism, making them feel safe and protected. Together, these might cost around £600 but I rarely see people who need all three.
What do you think needs to be done?
National Autism Awareness Week and World Autism Awareness Day on April 2 are good starting points for raising awareness of autism. I believe that this is only a starting point. A national campaign is needed which focuses on what can actually be done to help. Lack of understanding of the sensory difficulties means these are largely ignored, thus those on the autistic spectrum are left to struggle with these experiences. People with autism are overwhelmed by these sensory difficulties. If these are moderated or removed, then that person becomes someone you relate to completely differently, rather than someone simply defined by their ‘challenging behaviour’.
If you would like to hear more from Phoebe about her work with intensive interaction, she is hosting a masterclass on the topic at the Learning Disability Study Day in May.