Important points to consider

Carers expressed that they sometimes find it difficult to identify what they need, and they feel that they need ‘permission’ to take breaks without feeling guilty. They acknowledged that having breaks can be good both for them, and for the person being cared for. Carers also discussed the need to accept that the people they care for grow up, change, and need their own independence. They also recognised the value of having people thank them for what they do, and acknowledging the important role that they play. There was also discussion about carers being the experts, but that they are not always treated as such by professionals.

Ideas/suggestions

Some of the ideas and suggestions for carers to support themselves, and for others to support carers, were:

  • ensuring that self-care is practiced
  • building resilience
  • having time out
  • being provided with information about autism and available services (e.g. support groups, education, short breaks, outreach services, counselling, extra help at home)
  • having professional support post-diagnosis
  • having clear pathways to this support
  • training and workshops for family members

Resources/links

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