I’m caring for someone with autism
Autism is a lifelong developmental disability which affects how people communicate and interact with the world. Autism is a spectrum condition, which means there is wide variation in the type and severity of symptoms people experience. This also means they have varying and complex needs in terms of caregiving, from a little help with day-to-day activities to 24-hour support.
Challenge – communication and social interaction:
People affected by autism tend to have difficulty recognising or understanding others’ feelings and intentions and expressing their own emotions, which can make it hard to navigate the social world.
- Always use their name at the beginning so that they know you are talking to them
- Make sure they are paying attention before you ask a question or give an instruction
- Say less and say it slowly; pause between words and phrases to give them time to process what you’ve said
- Keep questions short and specific
- Be aware of the?environment – a noisy and/or crowded environment can affect how much the person can process
- Avoid using irony, sarcasm or exaggeration, as autistic people can take things very literally
- Use visual supports, such as photographs, posters, line drawings, and symbols
- Write it down, answering where, when, who, what, how and why
Challenge – distress and shutdowns:
When everything becomes too much for a person with autism, they can go into distress and shutdown. This loss of control can be verbal, such as shouting, screaming and crying; or physical, such as kicking, lashing out and biting.
- Give them some time – it can take a while to recover from information or sensory overload
- Turn off loud music and turn down bright lights – whatever you can think of to reduce the information overload
- Give them space – try to create a quiet, safe space. If you’re in public, ask people to move along and not to stare
- Use stress scales to help turn emotions into more concrete concepts. You could use numbers, for example, 1 = calm and 5 = stressed or angry. You can also use colours, for example green = calm and red = stressed or angry
- Give them an opportunity to express any frustration appropriately, such as hitting a pillow, ripping paper or squeezing a stress ball
- Minimize triggers, such as changes to routine
Challenge – repetitive behaviour:
Repetitive behaviour may include arm or hand-flapping, rocking and head-banging. This may be a way to deal with anxiety, block out uncertainty or gain sensory input.
- Think about the function of the repetitive behaviour or obsession. What does the person get out of it? Does it reduce anxiety?
- If the behaviour is in reaction to sensory input, you might find that modifying the environment (example: turning off strip lighting), can help to reduce anxiety and therefore the behaviour
- Make the world a more structured and predictable place. Prepare a range of calming activities to re-direct the person
- Set clear boundaries and explain why and where it is acceptable and not acceptable to behave in certain ways
- If someone is behaving inappropriately, try not to shout or give too much attention to the behaviour. A calm reaction may help to decrease this behaviour over time
Challenge – family relationships and concerns about the future
Having a sibling with autism can be stressful at times. You may feel your brother or sister gets more attention or doesn’t get reprimanded as often as you do. You might also be concerned about the future care needs of your sibling with autism, particularly when you parents are no longer able to be the primary caregiver.
Tips for siblings:
- It’s important to remember that your parents don’t love you any less
- Talk to your parents and let them know how you feel
- If you feel you can’t talk to your parents, try talking to another family member, family friend, teacher or other adult; or call a helpline
- It may be helpful to meet as a family to talk about ideal care options for your sibling with autism in the future
- Connect with Autism Canada at https://www.autismontario.com/ or call 1-800-472-7789
- Share your experiences and concerns with other young caregivers in our online peer support group or be part of the conversation in our online forum
- Call the Kids Help Phone at 1-800-668-6868 or text 686868
*Source: National Autistic Society