I’m caring for someone with autism

People affected by autism may have difficulty recognizing or understanding others’ feelings and intentions. They may have difficulties expressing their own emotions, which makes it hard to navigate the social world.

Caregiver tips:

• 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 have difficulty understanding
• Use visual supports, such as photographs, posters, line drawings, and symbols
• Write information for them to see by answering the questions: where, when, who, what, how and why

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.

Caregiver tips:

• 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 – do what you can 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

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.

Caregiver tips:

• 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 A calm reaction may help to decrease this behaviour over time

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 your 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 your peers. 
  • Support groups for families and caregivers of individuals with Autism
  • Learn more about OCO’s Peer Support programs.
• Get support at home
  • Learn about respite services in your community
• Get Connected to the support you need 
  • Call the Ontario Caregiver Helpline 1-833-416-2273 for information and referrals to connect you to the support you need for you or the person you care for in your community.
  • Join one of OCO’s programs
• Watch for symptoms of caregiver stress such as sleep problems, headache, irritability, and withdrawal. Adequate sleep, exercise, and proper nutrition can all help to reduce your stress. Learn about your mental health and caregiving
• Connect with resources to help you in your caregiving role 
  • The I am a Caregiver toolkit includes important information for the new or seasoned caregiver. This information was created by caregivers, for caregivers. It may be helpful for you or a family member.
  • Caregiver 101 e-learning (45 +min.) Learn about caregiver roles, conflicts, caregiver burnout and what to expect. This may be useful in explaining the emotional challenges of caregiving.
• Get help:
  • 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

Not sure where to start? Call our 24/7 helpline or talk to us in our  live chat to find resources in your community.