The Dark Side of Autistic Advocacy

When I began doing advocacy and education about autism and neurodivergent conditions, I began to meet advocates who, unlike myself, had known from a young age about their condition, and had subsequently never been treated or addressed like a typical adult. Often they display thinking based on “learned helplessness.”

Learned helplessness happens when you keep trying to do something and failing unless you are aided by someone in a position of authority or dominant group you don’t belong to. But you can’t succeed because you are not getting the type of support you need to be independent. Often this person or organization is a member of an established institution, and the methods of aid are designed, purposely or not, to stop you from having long term success on your own. When the person with less power or authority tries to become more independent (like through enacting systemic changes), the authority (for fear of losing control) either clamps down on the subordinate or withdraws approval and aid. You are scolded, abandoned, or excluded.

So we just stop trying to do things on our own terms and depend on NTs to direct us and be in charge of organizations and events supposedly built for us.

It’s important to understand how educators, medical institutions, and parents instill “learned helplessness” into young Autists. We are taught that we are so outside of what is acceptable that we must be changed. We must submit. We have to comply. We are taught NTs are always right. It is still very hard for me to stay in the frame of mind that other people are required to at least meet me halfway in communication and effort. We are not the problem; people not knowing how to interact with us is the problem. Neurophobia is the problem. Requiring conformity is the problem. Communication and cooperation are a two-way street or progress doesn’t happen in the long term.

The internalized ableism of many Autists becomes clearly visible when a non-autistic person or group who has placed themselves “in charge” of Autistic spaces, activities, or organizations abuses, belittles, or ignores the majority of Autistic people within that space. Most of the time we are simply tokenized within these organizations and given the impression that our group concerns are being considered when there is no such intent by the NTs at the helm. We are trotted out as successful or “inspiring” examples rather than experts. When an observant, fed-up, or abused Autist brings up this behavior, the Autistic people will split into two camps: those who are outraged and have likely been upset by similar treatment, and those who will side every time with the non-Autistic authority figure.

In the Autism Industrial-Complex ($6 billion per year profit in America) there are two kinds of Autistic people: the “good” ones and the “bad” ones. The “good” ones will go along with medicalism/behaviorism, not set down boundaries, not demand payment for work and “volunteering” their personal stories and projects, and never question the way our lives and abilities are framed to the general public. Even when some disagree, they stay quiet once they realize the college or organization will stop asking them to contribute.

The “bad” ones question authority, set down boundaries about what we are willing to contribute for free (which is the industry norm), do our own research and examine our own experiences, collaborate with one another, speak out against abusive and coercive therapies, and generally demand equity, direct aid, and Autistic control of funding and research for autism. The “bad” ones confront NT industry professionals who profit directly from spreading incorrect information that harms us. The “bad” ones don’t allow ourselves to be exploited anymore.

Here are some examples of what internalized ableism and learned helplessness makes Autistic advocates say in these conversations. Then there’s an explanation of why this isn’t true or doesn’t matter even if true.

“If we pull out of this [bad-faith] organization, we will lose what resources we do have.”

Yes, in the short term we will lose some resources and lousy “allies.” They will be mad at us and many of us can’t handle that kind of conflict or rejection. However, I have not yet seen any major NT-run organization that has provided extensive resources to us. We still have to do everything ourselves. The most I have ever received is the use of a room for my support group and some bad office supplies I have to drive across town to use. Sometimes they hire us on as token representatives, but these positions by their very nature end up chewing up the person in them and compromising their integrity. There’s a ton of turnover in these orgs as far as the Autistic members go.

How dare you stab [the abusing NT authority] in the back!!!” (By saying something)

It’s never good to “shoot the messenger” when your stated goal is to help people like yourself, but this happens a lot. We are not strictly a medical minority, we are an institutionally oppressed one, meaning we are socially and culturally vulnerable to bad people within these orgs. Especially after the #MeToo Movement, it’s the best policy to believe people with less power when they report mistreatment. Statistics show that the vast majority of these complaints are well-founded and need to be addressed. In addition, we are a population of people not prone to lying or manipulation of this type and non-Autistic people who profit from our involvement without paying or centering us are fundamentally exploiting us to begin with no matter how superficially nice and supportive they may seem.

“So you think that by starting our own thing you can do better, help more of us?!” (sarcastically)

Again, if we are not being heard in the first place and the services we actually need are not being put into place, or we are not getting money and people to create these needed services for ourselves, there’s little loss in moving on and trying to help Autistic people on our own ideological terms. Stop trying to make a place at someone else’s table when they fundamentally don’t respect you; build your own. It’s more work, but at least you will have a good seat from which you can build something that’s real and actually helps our quality of life and care.

But we can’t accomplish this on our own!

We have already accomplished so much on our own. We have educated so many parents of Autistic children that they are pulling their kids out of anti-autistic therapies, putting them into respectful programs that are child-led, and learning to relate to their children in ways their doctor told them they would never be able to do. We are getting the word out about us so much that we have shows about our lives on major platforms (no matter how imperfect) and we are beginning to be mentioned in political discourse and sought out by companies for our skills. WE did that. WE came up with the Neurodiversity Paradigm and Movement. It seems daunting because our stories get lost in the media and we are in the early stages of our own civil rights efforts, but the ball is rolling and we are past the “awareness” stage already.

“I think we can change this org from the inside. They’ll come around to our way of seeing things eventually.”

No. This doesn’t ever work in real life. I wish people were more open to admitting their mistakes and truly listening to us, but that’s not the world we live in. Ask Black people if having Black cops on the force has stopped police shootings or fundamentally changed policing. It hasn’t and it never will. If you threaten an organization more powerful than you by pointing out what they are doing that’s ethically wrong or not effective, they go into defense mode. If these autism orgs ever admitted that the therapies they provide or promote cause PTSD and groom kids for future abuse, they would be open to massive malpractice suits. Their reputations would be destroyed, the medical establishment would abandon them, their profits would dry up. Parents and adult Autistics would be able to sue for millions in damages. They already see us as inferior, I’m afraid to say. We are simply tokenized and when we are listened to, nothing actually ever changes. They aren’t going to upend a profitable business model.

Once you are a part of an organization, they hold all the cards. If they don’t like something you say, they have a million ways of silencing you, kicking you off the board or committee, or discrediting you. And they will in order to protect their interests, money, cure research, and reputations.

But we’ll get in trouble. We might be sued.

Not if what you say is true, you retain any evidence, and you don’t complain on social media, to those outside the organization, or outside of internal communications. If you keep it “in house” they have no grounds for suing you for libel or slander. In fact, if they harm you they are in danger of legal action, but might try to scare you and convince you that you have done something wrong when you haven’t.

So don’t believe them if you have been mistreated or ignored about serious issues. Conflict makes us feel like we did something wrong even when we didn’t sometimes. But if you have been hurt (emotionally, physically, or sexually) or if the org is being nasty and dismissive to the people they are given money to help, they are the ones who need to be scared. Besides, more and more Autistic people are becoming the type of lawyers who specialize in disability justice. We have legal standing just like any other American. This is why we need to back one another up.

We don’t have the skill sets to accomplish our goals without them.

I have to admit it is harder for us to accomplish our goals due to the nature of autism. We are often introverts who have difficulty organizing, finding enough money, and showing up to important meetings and protests. We run out of spoons fast. The fact that we even need so many charities is proof that the supports we really need to thrive and have agency in our lives are simply not there yet. That’s why we certainly need NT allies and aid.

However, we need to realize that these organizations are not our NT allies the moment they decide to ignore our concerns. They may act like they appreciate us, they may try to sway our low sense of self-worth by including us when we have never been included, they will flatter us, boost our creative work (which gives them advertising BTW), and put us in leadership positions with little actual power. They will even proclaim they support our views, but the proof is in the pudding. Has anything actually changed? Have they given you resources and volunteers to implement the programs you need? Have they been respectful at all times? Are they talking bad about other Autistic people? Are they encouraging infighting? Are they still profiting from promoting things we know are harmful to us? Are you still doing work for them for free?

Yes, we need allies, but the industry needs us more. Those of us operating from internalized ableism often feel that the only legitimacy and relevance we have is awarded to us by NT-led organizations asking us to contribute (again, usually for little to no pay). Their approval makes us fell seen and important.

But the opposite is true: they need us to be involved to be authoritative. That’s why they keep inviting us to contribute.

Imagine a conference about racism in America, but most, if not all, of the presenters and speakers and experts are white people. Imagine a symposium about trans people with only one or two trans speakers and experts. Ridiculous and offensive, right? But how many of us have been invited to speak or be on a panel at a conference organized and attended entirely by non-Autistic people who have simply observed us and studied old, outdated information about us compiled by other NTs? How many of us have been asked to speak for all Autistic people even though we are vastly different from each other? How many of us are allowed to be critical of NT professionals and perspectives when we talk about our issues at these events?

As long as we are “good” Autistics who aren’t critical, don’t have strong opinions, and don’t make them feel uncomfortable about not centering us and our consensus opinions on neurodiversity theory, we are allowed at the big table. And many of us will still side with the NTs because they do not really want to be associated with “rogue” advocates or Autistic people at all. Many of us will work for free and compromise our stance just to feel important and appreciated and included. But as long as that keeps happening, nothing is going to really change and we will continue to die very young. The services we need will never be constructed.

So be a badass Autistic.