Autistic Community Advocates

Who Advocates for the Advocates?9 min read

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.

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