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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.
(Advocacy Alliance definition)

Advocacy is a vital tool to enable people to access the services they need. The National Autistic Society publication Ignored or ineligible? - the reality for adults with Autistic Spectrum Disorders (2001) showed that although people with autism in the UK have a statutory right to have their needs for special services assessed by their local authority only 38% of those surveyed had a community care assessment and of these only 16% were actually offered one; others had to fight for one.  Advocacy has a strong role to play in tackling this problem.

In 2003 the National Autistic Society conducted research into the demand for advocacy and published a brief report entitled Autism: the demand for advocacy. The report is the result of a survey of independent advocacy organisations. The report highlights difficulties advocacy organisations have in working with individuals with autism spectrum disorder (ASD). 

In the same year (2003) the NAS report Autism: Rights in Reality highlighted that only 11% of carers stated that the adult they cared for had ever used an independent advocate. For low-income households this dropped to only 6%.

What is advocacy?

Advocacy is a process of supporting and enabling people to express their views, to access information and services, to find out about options and make decisions, and to secure their rights. 

Well over 1,000 independent advocacy organisations throughout the UK provide various forms of advocacy using both paid staff and volunteers. Some work with people with mental health problems, others with people with learning difficulties, while some schemes are generic. All should offer support that is clearly independent from service providers, carers or public authorities. 

There are various models of advocacy available, many organisations provide a range of options or levels of support.

  • Self-advocacy: this is speaking up for yourself and stating your own needs.
  • Group Advocacy: sometimes people need support to be able to do this, so groups of people can work together. These are often groups who use the same service, or have the same interests. The groups have a say over how these services can be run.
  • Citizen Advocacy: citizen advocates are unpaid volunteers. They work with individuals, one-to-one, and speak out for them to help people obtain services they need and secure their rights. They do not make decisions for people, but represent the persons interests as if they were the advocates own.
  • Peer Advocacy: this is where one person advocates for another who has similar experience. The advocate may have a similar disability to the person they are advocating for, or have had similar experiences.
  • Professional Advocacy: this is where people are paid to provide an advocacy service, focusing on a particular issue. The advocate will usually have special knowledge of the issues that need to be addressed. Some service providers will pay people to provide professional advocacy when issues arise.
  • Legal Advocacy: when lawyers represent service users in litigation, judicial reviews or investigations by ombudsmen or similar legal or quasi-legal bodies.
  • Uninstructed Advocacy: when an individual is not able to make clear their views and wishes regarding decisions about their life to those responsible for implementing them, so need a designated person to act upon their perceived best interests.
  • Statutory Advocacy: when there is a legal requirement for an individual to receive independent advocacy, eg the Incapacity Act, for a specific decision that needs to made in their life, such as where they live or medical interventions.

Advocacy and autism

Autism is a lifelong developmental disability that affects the way a person communicates and relates to people around them. The National Autistic Society estimates that 1 in 110 people have an ASD (including Asperger syndrome), almost 1% of the population (~520,000 people in the UK). Carers often play an important part in supporting people with ASD, but continuing reliance on their families may inhibit their independence. This is why access to advocacy can be important in helping adults with ASD to have a greater degree of independence.

All people with ASD have impairments in social interaction, social communication and imagination. They therefore need help to express their aspirations, interpret and process information regarding their rights and to request relevant services. People with Asperger syndrome, because of their fluent language, and average or above average IQ level, may not appear to need access to advocacy services. This can be misleading and it is important that advocacy services are available for all people with ASD.

Demand for advocacy

Adults with ASD involved in The National Autistic Society (NAS) report Autism: Rights in Reality (2003) wanted to access independent advocacy, but very few had been able to do so. Of those who had, the feedback was very positive.

Advocacy support is needed with:

  • transition to adulthood and adult services
  • access to housing
  • access to employment
  • assistance with social integration and life planning
  • access to health, social care and voluntary sector services.


As highlighted above, only 11% of carers stated that the adult they cared for had ever used an independent advocate.

People with ASD tell us they want the following qualities from their advocate:

  • trust and confidence: the right to choose an advocate where possible
  • accountability
  • the ability to make you feel better even if you have not been successful, because they put your case forward well
  • patience and assertiveness
  • the ability to determine when a volunteer or paid advocate is needed
  • that they ask the person what kind of advocate they want.


Some people with ASD can be advocates, they just use different techniques. They need the person they are advocating for to be clear, as they cannot read body language, etc. 

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

What advocacy services need

The National Autistic Society contacted 55 generic, learning disability and mental health advocacy schemes, a representative sample from across the UK. Most advocacy organisations (68%) do support people with ASD, but many of these expressed concerns about their level of confidence in working with people with ASD. 

When asked what they find challenging about advocating for people with ASD, the answers confirmed the diversity of problems experienced by individuals with ASD when trying to communicate their needs:

  • lack of understanding of autism spectrum disorders
  • communication difficulties
  • difficulties people with ASD have with choice
  • difficulties in finding out what the individual wants
  • problems in building relationships with the individual
  • gaining informed consent
  • ethics of advocating for people with communication difficulties.


Responses from advocacy organisations highlighted a need for training in awareness and understanding of autism. Over half the organisations had not previously been in contact with the NAS despite the fact that many advocated for people with an ASD. More than three quarters had not been in contact with a local autism society. The majority of independent advocacy services are therefore operating in isolation with regards to autism. 

The Advocacy for Autism project

From Spring 2008 the National Autistic Society has been awarded three years of funding for a new Adult Advocacy Project. The three main strands of this project are:

  • to develop and deliver advocacy training to advocates and health and social care professionals
  • creating a dedicated area on the NAS Autism Services Directory which will be used by adults on the spectrum to assist them in seeking support and having their own specific needs understood by professionals that work with them
  • collecting up-to-date information on advocacy organisations across England and adding them to the NAS Autism Services Directory, enabling people to find information about where adults on the spectrum can go for advocacy support. Please feel free to let Patrick Sims (patrick.sims@nas.org.uk) know any contacts that might be helpful.


We are interested in hearing about your experience of advocacy, to help us support organisations which provide advocacy to better meet the needs of people with autism spectrum disorders. Also, if you are an advocacy project and wish to have your details added to the NAS Directory or would like some autism training please contact patrick.sims@nas.org.uk

Finding advocacy services

To find an advocacy organisation near you:

Action for Advocacy (A4A)
Website: www.actionforadvocacy.org.uk

Advocacy Resource Exchange
162 Lee Valley Technopark
Ashley Road
London N17 9LN
Tel: 02380 234 904 (Mon-Fri, 2-5pm)
Website: www.advocacyresource.net

British Institute of Learning Disabilities (BILD)
Tel: 01562 723 027
Website: www.bild.org.uk
Email: l.brooks@bild.org.uk (Advocacy dept.)

Scottish Independent Advocacy Alliance (SIAA)
138 Slateford Road
Edinburgh EH14 1LR
Tel: 0131 260 5380
Fax: 0131 260 5381
Website: www.siaa.org.uk

References

Barnard, J. et al (2001). Ignored or ineligible? The reality for adults with autistic spectrum disorders. London: The National Autistic Society

Broach, S. et al  (2003). Autism: rights in reality - how people with autism spectrum disorders and their families are still missing out on their rights. London: The National Autistic Society

Lee-Foster, A. (2003). Autism: the demand for advocacy. London: The National Autistic Society