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)
What is advocacy?
Advocacy is a process of supporting and enabling people to express their views, to use information and services, to find out about options and make decisions, and to make sure their rights are respected.
Independent advocacy organisations 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 services are for anyone who needs them. All advocacy services should offer support that is clearly independent from service providers, carers or public authorities.
There are different types of advocacy. Many organisations provide more than one.
- Self-advocacy: this is speaking up for yourself and stating your own needs. We have a self-advocacy booklet to help you do this.
- Group advocacy: sometimes people need support to be able to speak up for themselves, so groups they work together in groups. These are often people 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 them get the services they need and secure their rights. They do not make decisions for people, but represent the person's interests.
- 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 the same sort of 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 problems 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 about decisions about their life and so needs a designated person to represent their best interests.
- Statutory advocacy: when there is a legal requirement for someone to have an independent advocate for a specific decision about their life. This could be about where they live or whether they will have medical interventions.
Read our brief guide to the Mental Capacity Act 2005, which provides a statutory framework to empower and protect vulnerable people who need support or are not able to make or communicate their own decisions. It makes it clear who can take decisions, in which situations, and how they should go about this.
Advocacy and autism
Carers often play an important part in supporting people with autism but sometimes if people rely on their families they may be less independent than if they have other support. This is why access to advocacy can be important in helping autistic adults to have a greater degree of independence.
People with autism may need help to express their aspirations, interpret and process information about their rights and to request relevant services. Some people with autism may be very articulate and so may not appear to need advocacy services. But they may struggle with particular aspects of their daily life and so it is important that advocacy services are available for all people with autism.
When might you need advocacy?
You might need support from an advocacy service to help you with:
- becoming an adult and starting to use adult services
- finding somewhere to live or moving house
- getting or keeping a job
- making friends, being part of your community and planning how you want to live your life
- using health, social care or voluntary sector services.
What should an advocate be like?
Autistic people tell us they want the following qualities from their advocate:
- trust and confidence - the right to choose an advocate where possible
- 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 autistic people can be advocates, they just use different techniques. They need the person they are advocating for to be clear, as they may have difficulty reading body language and other social cues.
In summary, an advocate needs: knowledge, tenacity, skills, resilience and a lot of common sense.
You may feel that you don’t need someone else to advocate for you and would like to represent yourself. Our free self-advocacy booklet was developed by a group of adults on the autism spectrum and is designed to help you communicate your wishes and needs to the people you meet.
You can order the self-advocacy booklet from our online shop or download the self-advocacy booklet here.
Alex, who has Asperger syndrome and is one of the authors of the booklet, said:
I hope that the advocacy booklet will give the public a better understanding and awareness of autism, which would make formal appointments a lot easier to cope with.
How does it work?
When you have a formal appointment, you simply fill in the relevant section(s) of the booklet and take it with you to the meeting. For example, if you have a meeting with someone to discuss your welfare or disability benefits you would complete the section on welfare and disability benefits found on page 22 and then give this to the person that you are meeting.
There is also a general section about you to complete to make the person that you are meeting aware of your requirements. For example you may want the person to know that you need a 'distraction-free' room to meet in. Or you may need information written down for you in plain English rather than being told lots of information verbally.
The booklet includes appendices on sensory issues as well as information for criminal justice professionals.
To request a Word version of the booklet, please email SAbooklet@nas.org.uk
Advocacy and transitions
When things are changing you might feel that you are not getting the right support or are not being offered the right services. An advocate can point you in the right direction, write a letter on your behalf or arrange to have a meeting with the appropriate people to discuss your case. Keep a file (for papers and on the computer) of copies of letters, assessments and emails. Write down the dates of any phone calls about the transition, who you spoke to and what was said.
You may know people who have been through the transition process. Speak to them and ask how they solved problems and where they got help from.
Look for local advocacy services in our Autism Services Directory, or contact the following for advice on how to try to solve any problems:
Complaining about health or social care services
If you want to complain about any aspect of health or social care, you can find further information on this for:
Finding advocacy services
Use our Autism Services Directory (www.autism.org.uk/directory) to find an advocacy organisation near you, or contact one of the following organisations.
020 7274 5484
People First is a self advocacy organisation for people with learning difficulties.
Scottish Independent Advocacy Alliance (SIAA)
0131 556 6443
SIAA advocates for independent advocacy in Scotland.
0330 440 9000
SEAP runs advocacy services to help with your health and well being in a number of local authorities in the South of England. They also help with NHS complaints.
Voiceability runs NHS complaints advocacy and other types of advocacy in a range of local authorities in England. You can find contact details for the different types of advocacy services on their website.
Last updated: October 2015
Quick link to this page: www.autism.org.uk/advocacyandautism