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What is an Autistic advocate?

In the Autistic community, a common term we hear is “Autistic advocate”. The popular definition is a person using their lived experience to further the cause of Autistic rights and the wider neurodiversity movement. Despite this however, advocacy is a complicated and important role.

As an independent advocate, I utilise various different models of advocacy depending on what I am doing. The most common model, and the one that you will often see online through social media is community advocacy. Community advocacy requires us to work to represent the views and wishes of a wider community of people. A good example of this kind of advocacy is the Spectrum 10k campaign.

Members of the Boycott Spectrum 10k campaign engaged in community advocacy when writing the joint statement that was sent to the Health Research Authority. Community advocacy can often blend in with activism based approaches to enable wider change for an entire community of people.

There is also peer advocacy. This is the model of advocacy I use most commonly. This usually involves working with individuals as a member of their own peer group to represent their wishes, needs, and fight for the accommodations they require. This is an important type of advocacy for Autistic people who so often have to work with professionals who do not have lived experience that allows them to empathise fully with their clients.

Perhaps the most complicated but vital form of advocacy used in the UK is statutory advocacy. Two particularly relevant types of statutory advocates are Independent Mental Health Advocates (IMHA) and Independent Mental Capacity Advocates (IMCA). IMHAs work to ensure a person’s rights are fulfilled under the Mental Health Act (1983), while an IMCA fulfils the same role with regards to the Mental Capacity Act (2005).

These roles are important because they ensure that a person is not needlessly detained or deprived of their liberty.

There are many misconceptions about advocacy, but the biggest one is that as advocates, we speak on behalf of people. Advocacy built upon being another person’s voice is fundamentally flawed. As advocates, we should be empowering a person to communicate their views and wishes themselves, in whatever form of communication works best for them.

Another role for an advocate (particularly within the Autistic community) is to help contextualise a person’s experiences. When a person is having negative experiences, we can use our experience as an advocate to help them understand why that has happened and what they can do about it. In the Autistic community, much of our community advocacy is based on helping people understand their Autistic experiences in order to help them better advocate for themselves.

The ultimate goal of advocacy is to become redundant. Effective advocacy should empower its recipients to be able to advocate for themselves. So, while it may sound strange, our ultimate goal should be to not be needed.

Whatever form your advocacy takes, it is important to engage in reflective practice, and remember it is not your job to save people. An advocates role is to empower people to fight their own battles. Nothing will burn an advocate out quicker than joining the dysregulation of the people they are trying to help. We need to be the calm in what is often a tense situation.

Advocacy is an intense experience, but it is so very worth it. I look forward to seeing how the Autistic community’s advocacy circles evolve in the future and look to continue to evolve my own advocacy as ideas within the community shift and change.

On the nature of advocacy

The word “advocate” is used widely in the Autistic community. Within this community it generally refers to a person who publicly speaks out on matters of civil rights. However, there is a much deeper meaning to the word advocate that brings with it an understanding of where the boundaries lie between empowering a person and speaking over a person.

In the context of the law, an advocate exists to not only make a person aware of their legal rights but also to help them understand their rights in a way that empowers them to use their own voice in the fight for fair treatment. While somewhat simplified, this is essentially what statutory advocacy aims to do.

What we see most commonly is community or group advocacy. This is because within the Autistic community, people are generally broadly representing the Autistic demographic and not a particular individual. This differs from statutory advocacy because you are representing a large group rather than an individual. A balance has to be struck between diverse viewpoints and approaches.

Regardless of what form your advocacy takes, it’s important to have boundaries. First and foremost, within the Autistic community, advocates are most likely peers and not external agents. This means that we need to know our limits and protect our well-being. Advocacy is at its most effective when the advocate is in good form.

You need to address your own motivations and drives. Autistic people have a wonderful sense of justice and often a desire to protect others. The problem is that this can manifest as somewhat of a saviour complex. When we are more concerned with rescuing someone than empowering them to help themselves, we can end up stepping on their rights ourselves.

At its core, advocacy should aim to become redundant. An advocate should empower a person or group to be able to speak for themselves. The overall goal is to create a knowledge exchange that facilitates the person a group receiving advocacy to self-advocate.

This is something we forget to often. We are not speaking for people. We are sharing knowledge and building confidence. We are creating environments and spaces that lift a person up and prevent them being spoken over.

As advocates, it is not our job to tell someone else’s story. It’s our job to empower them to communicate their story in whatever way works for them.

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