Over the last two decades, autism awareness has grown exponentially as diagnostic rates have gone up. Some of the initial focus of Autism Awareness Day (April 2nd) was on finding a cure for autism. But in the last several years, the focus has intentionally changed toward acceptance, neurodiversity and finding the most effective ways to support people with Autism Spectrum Disorder (ASD).
Although this can sometimes feel challenging, it is important to recognize three very simple factors that every person with ASD needs: safety, acceptance and a sense of competence.
To feel safe, we all need organized nervous systems, consistency and concrete expectations. We may need information about what to expect with a new situation, or time to process information.
• People with ASD commonly have difficulty regulating sensory information.
They are usually either hypersensitive (needing less stimulation) or hyposensitive (needing more stimulation). However their need may be particular to each sense. Someone who is hypersensitive to touch may also be hyposensitive to auditory information, for example.
In order to help individuals organize their nervous systems, you can start by looking at the environment around them. See if you can modify the surroundings to either minimize or maximize sensory data. This can be as simple as letting someone wear glasses with a slightly coloured tint, providing noise-reducing headphones, or adding movement breaks.
When we think about the senses, we commonly think only of the 5 external ones – hearing, touch, taste, smell and sight – but we also need to remember the senses that are internal – the sense of balance (also known as vestibular) and of body awareness (also known as proprioception).
Once you have assessed the environment and sensory input of an individual, it is also helpful to teach individuals physical self-regulation skills to calm and organize their nervous systems when they feel activated or have been triggered into a flight or fight response.
• People with ASD are literal thinkers and need concrete expectations and consistency.
A student with ASD – let’s call him Joe – was running down the hall at school, when a teacher called out, “Stop running.” What do you think Joe did immediately? He demonstrated complete compliance and followed the command – by skipping instead!
Now the teacher didn’t mean for him to skip. The instruction was meant to imply that he should walk in the halls. So the teacher sent Joe to the office for being disrespectful, and Joe got anxious and agitated because he could not make sense of why he was being punished for doing what the teacher told him to do.
This is why it is very important for us to think about our speech. We need to think about what we want to see, not what we don’t want to see. If I asked you right now not to think about a pink elephant, what would you immediately start thinking about? And why should I be annoyed that you didn’t think of a yellow duck instead? If I wanted that, the more helpful direction would be “Think about a yellow duck.”
When we focus on the behaviour we don’t want to see, we force individuals with ASD to do the work of translating our expectations. That can sometimes feel overwhelming. If you are about to say, “No hitting”, think for a moment first about what you want to see: perhaps “Gentle hands”, “Hands at your sides”, “Use your words” – all of those could be appropriate.
It is important for us as supporters to do the hard work of thinking of what the alternative could be, teaching that behaviour during times of calm, then prompting the positive alternative behaviour at the point of need.
When we focus on what we want to see instead of what we don’t want, we are providing the individual with concrete expectations.
We all want to feel accepted. This means feeling valued and celebrated, knowing that people believe we are doing our best and feeling like people are interacting with us with dignity.
For Joe, acceptance is one of his major issues at school. Because he is a literal thinker and would comply with the exact instructions the teacher gave instead of understanding the nuance of what the teacher was actually intending, he found himself at the principal’s office several times.
It was difficult for the teacher to believe that Joe needed better instructions to follow. The teacher was convinced that Joe was being defiant. This led to an ongoing feeling of anxiety for Joe, who was being misunderstood and then getting defensive when his motives were questioned.
Anyone supporting an individual with ASD needs to truly believe that the person they are supporting is doing their best, and if a misunderstanding occurs, be able to recognize how they might have contributed to it. They also need to be mindful about being positive and enthusiastic in their interactions.
• For anyone to feel competent, they need to engage other people and activities, build on acquired skills, gain a sense of mastery and tackle uncertainty.
People who support individuals with ASD are sometimes so focused on building a sense of safety and acceptance that they can forget that building a sense of competence is just as vital. Sometimes we can lower expectations for the people we support because we are trying to protect them from feeling frustrated or anxious about new demands.
The key to building competence is setting goals that are broken down sufficiently. Imagine a large goal, like getting ready in the morning. That is a large task, involving many substeps and prerequisite skills. It might seem so daunting that it seems unachievable, or that aiming for a goal that large would simply be a lesson in frustration.
• When setting goals for the people we support, we need to remember that we should not let “the current reality become the permanent reality.”
(This is from the Facebook page Special Books by Special Kids.)
It is important that we have a strong understanding of the skills and abilities of the person we are supporting. Then it is important to have a clear understanding of what our goal is. Is it to go through all of the steps of getting ready independently? Will we have some of the steps set up? (Clothes laid out already, food for lunch ready to pack.) Will we employ a visual checklist to help the individual make the transition from one step to another?
Once we know clearly what we want to teach and where the individual is at, we can create a ladder of micro-steps that will get us from their current reality to the next stage of competence. Perhaps sub-skills will need to be taught, or steps will need to be broken down fully. We might need to slow down our speech or our expectations.
If we work one micro-step at a time, we have hundreds of opportunities to celebrate new mastery, which creates a momentum for competence.
For more information on practical strategies for building safety, acceptance and competence within the ASD population, please register for the CTRI course Autism: Strategies for Self Regulation, Learning and Challenging Behaviours.