Advocacy and Autistic UK CIC

It’s national advocacy week, so we thought it was an ideal opportunity for us to talk about what advocacy means to Autistic UK, and how we let that focus our work. The West Virginia University Centre for Excellence in Disabilities cite three types of advocacy:

1. Self-Advocacy – advocating for yourself

2. Individual Advocacy – advocating for individuals g. assisting someone in a medical appointment

3. Systems Advocacy – advocating to change policies or laws to benefit the wider community

As stated in the About Autistic UK CIC section of our website, we do not seek to represent Autistic people, rather we aim to ensure that Autistic people can represent themselves. Our aim is to equip Autistic people with the tools for them to be able to self-advocate, to provide training, advice, and signposting to reduce the need for individual advocacy, and our main focus is on spearheading wider change through systems advocacy. We believe that society needs to move away from the idea that other people need to speak for the Autistic community, and we are working to develop systems to enable Autistic people to speak to us to ensure as many Autistic voices as possible are heard.

Autistic UK believes that organisations – be them public or privately owned – should be transparent. We also believe that we are not exempt from this. Therefore, we want you to know what we’re doing to work towards our goals, and how we’re doing it.

We think it’s important for everyone to know our set up. We have seven executive directors and are chaired by Willow Holloway. All directors are neurodivergent, most are Autistic (6/7), most of us are also parents/grandparents of Autistic and otherwise neurodivergent children, and we are all working on an unpaid voluntary basis. At present we are also completely unfunded, and the directors are paying to keep the company operating as the coronavirus pandemic has meant that funding streams are particularly difficult to find. This means that while we would love to be involved in everything we’re notified about, we have to ensure that we don’t spread ourselves too thinly, which would affect how effective we are at what we do.

Autistic UK believes that the term advocacy is often misunderstood by wider society, and we are therefore refocusing on the term representation. In order to be effective systems advocates we must adhere to four approaches: engagement, representation, co-production, and participation. In order to break down the representation barriers with the Autistic community, we must listen to the Autistic community.

Engagement

Autistic UK is user-led and we engage with the Autistic community in a number of ways to ensure this happens. We are always looking for new ways to ensure we reach – and listen to – as many people as possible. During the pandemic we have been unable to engage with the community face-to-face, so our engagement has included:

1. Focus groups with a new topic to be discussed each month. So far we’ve connected with Autistics and allies (always ensuring one of the sessions is for Autistics only) to find out how the pandemic has affected them, their experiences of mental health and relevant services, and whether or not attendees believe Autistic voices are being heard. Invitations to these sessions are first sent to those who have expressed an interest, followed a few days later by being advertised on social media. Our next focus groups will be about Autistic experience of education.

2. Social media campaigns and contact.

3. Surveys which inform reports such as our Oliver McGowan Mandatory Learning Disability and Autism Training for all Health and Social Care Staff report and our Hub Provision for Statemented Children report
   

Representation

A number of our directors sit on advisory panels and forums who want us to represent the views of the Autistic community. As our aim is to ensure the community can represent itself, we use the information gathered during our engagement with the community (with consent and anonymised unless otherwise requested) to inform our responses, both to written consultations and in the meetings we are part of, and use co-production (which is expanded on in the next point). Some examples of where we help Autistic voices be heard are:

1. National Institute for Clinical Excellence

2. National Health Service England and Wales

3. Welsh Government

4. National Police Autism Association

5. Various Disability Organisations

6. European Council for Autistic People
   

Co-production

Co-production is a crucial element in getting Autistic voices heard, particularly by those who have ignored them. Autism research, for example, needs to be led and driven by the Autistic community to ensure that outcomes aim to makes lives better for Autistic people (social research) rather than being focused on cause and/or treatment which can lead to eugenics (medical research). Therefore, we are working with universities and other research bodies, such as the Ministry of Defence, to ensure they are prioritising the needs and expectations of the Autistic community. For Autistic UK, co-production doesn’t end with other companies and organisations giving us a seat at the table. We want to ensure that other Autistic organisations and individuals have the opportunity to have their say. For example, if we hold a stakeholder position which allows us to respond to consultation documents, we welcome the opportunity to submit a collaborative response to ensure those who do not have their own channels can use ours to make sure their views are included.

Participation

In order for us to stay true to our principles, we are expanding on the ways the Autistic community can participate in the work that we do, particularly for those whose voices are currently not heard. We are in the process of writing our application form for our advisory groups which will be split into three categories:

1. Autistics in professions such as teaching, medicine, accountancy etc.

2. Autistic led organisations

3. Individual Autistic advocates

These will be advertised across our social media once the forms have been finalised.

Over the next few weeks, we will be releasing articles giving more information about the work we’ve been doing. If there’s anything you think we should be getting involved with, or that you’d like to bring to our attention, please send us an email to info@autisticuk.org.