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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
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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
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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
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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'
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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
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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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