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Advocacy, Self Advocacy and Autism Ranking: Unable to rate

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Advocacy is taking action to help people say what they want, secure their rights, represent their interests and obtain services they need.

Advocates work in partnership with the people they support and they take their side. Self-advocates speak for themselves or for someone else in the same situation, for example, other people on the autism spectrum.

Some advocates specialise in helping specific groups of people, such as people with mental health needs or people on the autism spectrum. Some advocates specialise in helping people with specific issues such as education or disability benefits. 

Some advocates work for independent organisations as paid members of staff or as unpaid volunteers. They may provide advocacy as a separate, standalone service or they may provide advocacy as part of a wider package of support. They may also train their clients so that they learn how to advocate for themselves.

Our Opinion

There is currently very limited research evidence on advocacy and self-advocacy for people on the autism spectrum or their parents and carers.  The studies we identified varied enormously in terms of the type of advocacy provided, the type of study used and the evidence that each study presented.  For example:

  • Some research papers described advocacy or self-advocacy movements but did not provide any kind of scientific evaluation of the advocacy provided by those movements.
  • Some research papers described the benefits of, and the difficulties in obtaining, advocacy and self-advocacy but did not provide any kind of scientific evaluation of the advocacy provided.
  • Some research papers examined the effectiveness of advocacy training but did not provide any kind of scientific evaluation of any advocacy undertaken by the participants following that training.
  • A meta-analysis of parents’ experiences of advocacy did not provide any kind of scientific evaluation of the advocacy provided to or by the parents.

There are a number of reports (Scottish Executive, 2006; National Institute for Mental Health in England, 2008) which provide best-practice guidelines on advocacy for people with complex needs. We believe that anyone providing advocacy for people on the autism spectrum, or their parents or carers, should follow those guidelines. 

We also believe that further research should:

  • Provide a scientific evaluation of specific advocacy programmes, to determine if they achieve the specific objectives of the programme (such as increased funding or better services) and if there are any additional benefits for the participants (such as increased self-confidence or knowledge of autism).
  • Investigate successful advocacy programmes to determine the key elements that make those programmes successful for whom and under what circumstances.
  • Provide a scientific evaluation of advocacy training programmes, to determine the key elements that make the training successful and appropriate to the needs of the people being trained.
  • Involve autistic people at all stages in the development, running and evaluation of those studies.

Disclaimer

Please read our Disclaimer on Autism Interventions


Updated
31 Oct 2017
Last Review
01 Aug 2017
Next Review
01 Aug 2020