I’m caring for someone with autism

Autism is a 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.

Get the right help for a child with autism
The sooner you get early intervention services, the more successful your child is likely to be as he/she gets older. Research shows that intervening before age 3 has a bigger impact than waiting until the child is over 5.** Early intervention services can help with the development of children who have physical, cognitive, social, adaptive, or emotional delays. For services in your area, connect with Autism Ontario at autismontario.ca or call 1-800-472-7789.

Get the right supports for a teen or adult with autism
Autism Ontario offers a variety of online events, support groups and webinars for the whole family. Autism Canada offers Sensory Support Kits, which include items to help those on the autism spectrum avoid a sensory meltdown or a shutdown when they are experiencing stress. For information, tools and resources, visit autismontario.ca or autismcanada.org.

Tips to help you respond to some of the challenges people affected by autism may face

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.

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 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. 

 
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 – 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.

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

Get help:

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

*Source: National Autistic Society

https://autism.org.uk

**Source: Everyday health

https://www.everydayhealth.com/autism/autism-caregiving.aspx

SOURCES:

https://www.autism.org.uk/advice-and-guidance/topics/sensory-differences/sensory-differences/all-audiences

https://www.autism.org.uk/advice-and-guidance/topics/behaviour/meltdowns https://www.autism.org.uk/advice-and-guidance/topics/behaviour/meltdowns/all-audiences

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