What do we expect of Autistic Community Advocates?
By Quinn Dexter of Autistamatic
More than once I’ve seen autistic community advocates come under attack. Sometimes it’s perfectly fair, like when an advocate, in all good faith, makes statements which are inaccurate or misleading.
It’s only right we should be corrected and pointed in the right direction to update our understanding. The wider our reach, the more important it is for us to demonstrate humility when shown to be in error.
Other times it has been unfair and even malicious. We hear cries of, “You don’t speak for me!” alongside paradoxical comparisons to other autistics and even bizarre accusations of people faking their autism to be “fashionable.” The attackers may pontificate about the ignorance of the advocate, but it may be their understanding which is incomplete or bent out of shape.
In between those are nitpickers who quibble over nuances of grammar or meaning. Like limpets, they latch on to one aspect of an advocate’s message and refuse to let go. Whilst defending themselves, the recipient wastes time & energy fighting back that could be better used on behalf of the community.
Misunderstanding?
Perhaps there is some misunderstanding about what we actually expect from our advocates?
The autistic community uses the term to describe people who constructively seek to educate about autism and autistic lives. They work to improve public understanding and foster more optimistic futures for autistic people.
An “autistic advocate” is usually on the spectrum, though it could accurately describe a non-autistic ally fighting the same cause. The adjective “autistic” most often describes the advocate themselves, but could be the cause they are fighting for.
Those who earn the description of autistic advocate often write blogs, make videos, lecture, or are active on social media. They may also engage in various offline activities to the same end as their online and creative work.
Social media posts can be enough for people to see someone as an advocate, too. The message counts more than the medium chosen to convey it. As long as they broaden understanding and cultivate the common goal of autistic acceptance, they are an autistic community advocate.
Whilst nothing prevents anyone from simply calling themselves an advocate, the title is still one that has to be earned. One is not an advocate for any community unless acknowledged by its members. If people don’t feel you speak on their behalf, then you won’t attract followers or subscribers– so your words will fall on empty ears.
The sole role of a community advocate is to represent the best interests of others and communicate those interests, and even negotiate with those who have the capacity to make change happen. That potential exists in the loftiest corridors of power and in the hearts and minds of everyday people, and a true community advocate will take any opportunity available to exert a positive influence at every level.
Privilege
Undoubtedly there is some perception of privilege or social advantage to the role, yet those are nothing compared to the responsibility of ensuring the community is fairly and accurately represented.
The visibility of advocates puts them at risk of more than just reputational damage. Some have been physically threatened, and not just by those on the other side of the debate. It has come from within the communities themselves.
Disgruntled individuals, factional splits, and intentional agitators all can prove a threat to the success and well being of an advocate. When you add in the immense amount of work involved in effective advocacy and the fact that most– if not all— of the hours put in are without payment or personal benefit of any sort, it becomes clear that it is not a role any should consider unless they are truly willing to give of themselves for the benefit of others.
There is another interpretation of the noun “advocate,” though. We use the term every day to describe people representing the interests of individuals. When we represent someone, we are obliged to uphold their points of view, even if we don’t agree with them.
Personal Advocates
Defense lawyers are an excellent example of personal advocates. We’re all aware of their professional obligation to defend the interests of their clients to the best of their ability. Their personal opinions are irrelevant to their task. There is no doubt that many a lawyer have defended someone they knew to be guilty. Defense lawyers try prove their client innocent, even when they are 100% certain of their guilt.
To advocate for someone on a personal level, one must leave one’s own opinions, prejudices, and preconceptions at the door and take on the client’s motivations and desired outcomes as one’s own. Even if a lawyer thinks their client a monster deserving of the most severe punishment, they must put it to one side and represent them as if they are certain of their innocence and the absolute need for leniency should they be convicted. If they fail to do so, then their services are worthless to their clients.
Community Advocates
Advocating for a group or community is little different. If one is advocating for a marginalised group, one must always have the best interests of that group at heart. Personal opinions count, but to represent a community, one must advocate for the point of view or desired outcome of the majority.
Individuals may not share the same opinions on every topic, but the majority view dictates the path of the advocate. If the majority of the group favours path A, then the advocate must seek to follow path A to further their common interests.
If they represent minority path B, then the nature of their advocacy changes. They would no longer represent the larger group following path A, but a splinter group that favours B instead. Many of the methods and desired outcomes may coincide, but if the differences in opinion are contradictory, then schisms inevitably arise.
People have harshly criticised some autistic advocates for expressing controversial points of view. This is fair when the view under discussion contradicts the majority view. If the advocate wishes to represent the community, the majority view must prevail because their role is to promote the best outcomes for as many of the community’s members as possible.
Personal Opinions
Advocates have every right to express their personal opinions and disagree if they so choose. They should be clear that it’s their own opinion and not promote it as if it were representative of the wider group. They may also choose to end the discussion should the other party conduct themselves inappropriately. However, they must be certain that when they advocate for the group, they do so from the perspective of the majority.
Advocates must also bear in mind that openly discussing opinions which contradict the majority view they represent may negatively impact their credibility. They must proceed with caution. An opposition politician who expresses admiration for the incumbent party or it’s leader may lose support both within their party and their constituency, regardless of the objective value of their views.
Group advocates need to be receptive to other points of view if they are offered. If they are reasonable, then open discussion can occur. It may prove constructive enough to amend the majority view in the long term.
If the majority is narrow, the advocate could rightly consider whether both points of view deserve expression in their work. However their unspoken contract remains to communicate the ideals of the larger portion of the community they represent above all.
No two people are alike, whether they are autistic or not, so differences of opinion are inevitable.
Commitment
Autistic advocates have no obligation to represent every point of view within their community. Their commitment is to the broadest view which unites the most people. It’s in the interest of the advocate to entertain alternative points of view and to discuss any that have merit.
They are under no requirement, however, to submit to aggression, gaslighting, or blackmail should they fail to represent every sub-group. If a significant minority feels strongly, it is not unfair to ask an advocate to mention it. They could bring it into the wider discussion. To insist that they do or criticising them for representing the majority interest is nobody’s right or privilege.
We elect politicians based on a public opinion on a single day every four or five years. They go to great lengths to influence the direction and weight of public opinion on those days. Once elected, their tenure is almost guaranteed for a fixed period.
Given current political systems, they rarely actually represent the views of the majority, nor even of just those who turned out to vote. They only have to face that periodically. However advocates face that same weight of opinion every day.
People can unsubscribe from us or unfollow us with the press of a button, so our voices go unheard. For what we do to contribute to the community good, it must hold more than value to those within. It must also be credible and reasonable to those outside whose opinions we seek to change.
Minority vs Community
When we criticise an online autistic advocate for not representing minority views, we misunderstand their role within the wider debate. There are some who advocate for individual autistic people when dealing with the law, government agencies, and healthcare providers. Others publicly advocate for the broader interests of autistic people. There are very few of us who have the time, the energy, and the skill to do both effectively.
To advocate for a community we MUST represent the majority viewpoint to achieve maximum benefit, even if we partially disagree. The community advocate represents the group like the lawyer defending a client they know to be guilty. When we accept the role of “autistic advocate,” our output must reflect the desired methods and outcomes of more autistic people than not.
If we choose to represent our own contradictory viewpoint then we should not claim that it represents the wider community. We should call ourselves something more accurately descriptive and distinguish ourselves from those who do.
Autistic advocacy for the community, based on majority opinion, has already helped move the social narrative in our favour. There has been progress despite the long road we have yet to travel. By all means, have respectful discussions with the many advocates who give their time to our community, whatever your views.
There are always uncomfortable discussions on the road to change. Most will listen if they are conducted kindly and patiently. However, please don’t expect anyone with a platform to transmit your ideas if they don’t have merit or if they reduce potential benefit to the majority.
Say your piece
If you feel you have something to say, that people need to know, then say it. You have the means at your disposal , just as any existing advocate, to say your piece and be heard. Just be certain that if you claim to represent the interests of a particular group, whether they be autistic people or any other, that you are a voice for that community and that your voice reflects them as accurately as possible.
Advocates don’t create the agenda, we are conduits for the existing and evolving needs of the community. As voices of a community we have inherent responsibility to ensure our words reflect the most complete truth possible. That truth lies in representing the desires and hopes of more people than it does not. Every point of view on a given topic deserves a hearing. Everyone has a right to representation, but only one point of view can represent a majority.
For videos & more about autism & autistic life please visit
Quinn is married, runs and creates the Autistamatic blog and video channel, and has a cat with enormous feet.
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