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Having Your Say? The Same As You? National Implementation Group: Report of the Advocacy Sub Group

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Annex 7 Strategies for effective advocacy for people with ASD

How ASD affects a person's communication

  • Non-verbal
  • Limited communication
  • Absence of desire to communicate
  • Echolalia and repetitive speech
  • Confined to expression of needs only
  • Factual comments irrelevant to conversation
  • Talking incessantly regardless of response
  • Better expressive language than receptive language - not understanding language

Strategies

  • Use clear, unambiguous language
  • Use short sentences separating out different ideas e.g. Ask your sister if she wants a cup of tea and then come and tell me what she said
  • Limit non-verbal communication
  • Do not use metaphors or colloquial speech
  • Sarcasm and irony are confusing
  • Remove uncertainty, use visual tools like a visual diary
  • Tell the person who you are, what you can and can't do, how long you will be with them, how they can contact you and when

How ASD affects a person's social interaction

  • Inability to interact with peers
  • Lack of desire to interact
  • Doesn't understand social cues
  • Socially inappropriate behaviour
  • Difficulty in understanding and expressing feelings
  • Emotionally inappropriate behaviour
  • Poor ability to make and maintain friendships

Strategies

  • Take time to find out what is important to person and how they want to interact
  • Use person's own interests
  • Focus on one thing at a time
  • Don't raise expectations that cannot be fulfilled as this will create anxiety
  • Explain the 'rules'
  • Explain how they apply in each situation

How autism affects a person's imagination

  • Difficulty in understanding that other people may see things from a different viewpoint
  • Repetitive re-enacting of role often copied without understanding purpose behind actions
  • Difficulty in generalising concepts - literality in understanding spoken language
  • Difficulty in understanding abstract concepts - cause and consequence

Strategies

  • Do not assume the person knows what you intend to do next
  • Don't take for granted they know the next step in a sequence of events
  • Limiting choice
  • Role play situations before they occur
  • Use photos or video to help understand sequence of events
  • Support the person each time they encounter a change

Other factors

  • Ritualistic behaviour
  • Overlapping conditions e.g. ADHD, Tourettes, Mental Illness
  • Sensory issues - hypersensitivity to noise, touch, smell - environment

Positives

  • Good visual skills
  • Excellent factual memory
  • Precision and accuracy
  • Attention to detail
  • Adherence to 'rules'
  • Strong sense of 'right' and 'wrong'

How might all of this make advocacy difficult?

  • Wide diversity of ability - a spectrum disorder
  • Difficulty in understanding different view points and abstract concepts - and therefore options, cause and consequence
  • Difficulty in organising and planning ahead
  • Resistance to change - irrational fears, high anxiety, ritualistic behaviour
  • Difficulty in forming relationships
  • Difficulty in communication and understanding e.g. linking separate sentences to make meaningful statements

Issues to consider

  • Type of advocacy needed
  • Advocacy approach: structured, clear, consistent
  • Communication and non-instructed advocacy
  • Mental capacity and decision making legislation
  • Choice and introducing changes

What people with ASD tell us they want in an advocate

  • Trust and confidence. The right to choose an advocate where possible
  • Accountability
  • A good advocate should make you feel better even if you have not been successful, because they put your case forward well
  • Patience and assertiveness
  • Some people with ASD can be advocates, they just use different techniques - they need the person to be clear, as they cannot read body language etc.
  • Determine when a volunteer or paid advocate is needed
  • Ask the person what kind of advocate they want

In other words an advocate needs: knowledge, tenacity, skills, and resilience and a lot of common sense.

The National Autism Society runs a national Helpline, which receives 35,000 calls a year. Many of our callers would benefit from advocacy, and we do often refer on to advocacy organisations. The main issues people need help with are:

  • Education
  • Benefits
  • Community care and access to services and support
  • Health services

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Page updated: Thursday, April 13, 2006