An Autistic Professional Calls for Autonomy for Neurodiverse People

Our culture glamorizes doing your own thing and not caring what others think of you, and not being dependent on others, but only those with a certain amount of power and privilege can afford to actually do that. The rest of us, most of us, have to live within a give-and-take social world where it matters how others treat us and what they say about us.

Marginalized people, or really just those who are down on their luck, are especially reliant on people’s good will and good opinions of us because we need others’ help. This leaves us especially vulnerable to people who seek to take advantage because if we get into conflicts with people and get a bad reputation for being “difficult” or “rude” then people will be less likely to want to hire us, let us stay with them, loan us money, care for us when we are ill, etc. We can be manipulated by those who think we won’t realize that what they request is not normal. Or they may just think that they know best what’s good for us and not consider that we might have different ideas.

When marginalized people are able to protect and look out for ourselves, and for each other, we can avoid having to rely on protection from authorities outside our communities. We can stay confident and not lose the ability to manage our own lives.

I like to think that I’m proud of who I am and confident in my own skin. I cringed at the thought of even writing this essay because I imagined people reading this and saying “oh, autistic people are getting taken advantage of! See, they can’t manage their own lives, they need us to step in and rescue and look after them.”

However, I have to admit that this has been an issue for me, as well as for others I know. As the founder of a small freelance business, I’ve discovered that over the years a few companies that have partnered with us are turning around and marking up the cost of our services so many times over to the customers that their expectations are way out of proportion to what we can deliver. We employ disabled people who often have immediate financial needs and we don’t have the time or resources to seek out legal counsel or negotiate contracts. I’ve applied for short term work through a temp agency and when they found out that I lived in a working class area outside San Francisco proper, they suggested that I work with their local office closer to me, where I am being directed towards positions with significantly lower wages and crazier hours.

Other friends of mine have run into men who lied about their age or marital status in order to date them, and employers who overworked them, to the extreme of a daycare worker left alone with ten small children for minimum wage.

So I join with others in movements related to different kinds of marginalized people, including the neurodiversity movement, and look into how we can educate and empower each other to control our own destinies and lessen the likelihood that we will be manipulated.

When marginalized people are able to protect and look out for ourselves, and for each other, we can avoid having to rely on protection from authorities outside our communities. We can stay confident and not lose the ability to manage our own lives.

Many social justice thinkers have discussed how and why it can be problematic to depend only on outside authority for our safety, in situations ranging from neighborhood policing to intimate partner violence.

Systems in our society that are intended to help and protect people can be double-edged swords. They teach us to go along with authorities and experts rather than trusting whatever natural instincts we have about whether situations are safe or comfortable for us.

Systems in our society that are intended to help and protect people can be double-edged swords. They teach us to go along with authorities and experts rather than trusting whatever natural instincts we have about whether situations are safe or comfortable for us.

Many self-help programs, from twelve-step addiction support to financial management courses, start off with the assumption that we are clueless, powerless, or in some way incapable of knowing what’s best for ourselves. Government and private social services often require compliance with detailed rules and regulations that leave people feeling as if no one finds them trustworthy or able to manage their lives. And I have heard from those who have applied for SSI benefits that the application process is quite humiliating—having to list and document each job loss and personal failure in great detail.

And, too much of the mental health world (as well as the socially minded nonprofit spaces in which I function) operates according to a paradigm where there are educated, professional, capable caregivers who know what they are doing, and then there are those in need, whose only role is to receive the assistance and be grateful and photogenic.

Making autistic or any marginalized people feel incapable, discouraging us from paying attention to our gut instincts about our lives, needs and safety can harm us because it deprives us of those instincts as a source of insight into what’s okay and what we should resist or avoid. I remember trying to be polite and pushing down initial, instinctual feelings of annoyance when people in volunteer organizations seemed pushy about getting me to take on too many projects and then watching the situation get even more overwhelming as time passed.

A mindfulness author we represented once got very quiet while we were talking on the phone. She told me in confidence that her book wasn’t just woo-woo to help people relax—it was also about her practice of paying attention to her surroundings that had helped keep her safe when she was stalked. Her instinct to carefully watch the people and places around her made her feel secure enough to continue living an independent life in a large city while successfully avoiding her stalker.

A tactic of people who take advantage of others is to make their victims distrust themselves and their own self-protective instincts. Then they depend instead on the person who’s manipulating them for guidance and validation. So, if you’re already primed to see yourself as incompetent and deficient, with a broken brain, and let the experts in charge take control of your life and self-perception, you’re accustomed to doing what the person who’s acting abusively wants you to do.

If you’re primed to see yourself as incompetent and deficient, with a broken brain, and let the experts in charge take control of your life and self-perception, you’re accustomed to doing what the person who’s acting abusively wants you to do.

Our learning from experts about how to better manage our lives can happen more effectively for all concerned if it’s seen as a two-way street. As a conversation where autistic and other marginalized people have input and where those who seek to protect or educate us see us as partners and listen to what we have to say about our own lives.

I’m working with the San Francisco chapter of Young Women Social Entrepreneurs to set up a focus group where people who have received assistance from a nonprofit or government agency come to tell their stories. They will share the wisdom they have, which will likely include how they survived a rough situation, what they learned from the experience, and what it was like for them to navigate available assistance and whether the system worked for them or not.

Corporations facilitate this sort of information exchange with customers through market research and focus groups, because they know that understanding customers makes sense for their bottom lines. If ordinary shoppers’ gut wisdom is important enough to be able to influence a corporation, we can certainly also value all of our own instinctual senses concerning what works for us, how to protect and care for ourselves, and how to navigate our world.

As an autistic woman in a working-class neighborhood, when people seek to help and protect me, they often also take away aspects of my autonomy. I gave a talk to a therapy group of other autistic young women on how to start small businesses or do freelance work to develop sources of income. The therapist who coordinated our sessions listened and implemented our group’s suggestion that we take turns leading workshops and sharing our knowledge, and I do give her a lot of credit for that.

After I spoke, she asked if I really thought autistic women would be safe putting personal contact information out online, going out at night to professional events, and meeting up with clients they’d found on the Net.

There are real safety concerns there and problems people might run into with those situations. I’m not denying the very real issues of violence against women and gender-nonconforming people, the disabled, or any minority. But I would ask “how can we work together to make freelance work, entrepreneurship, or just plain socializing, safer for ourselves as autistic people?” rather than preventing autistic people from doing freelancing.

It’s difficult enough for neurodiverse people to find work and financial support. Social service benefits are often difficult to navigate. Even if we get social service assistance, it’s not enough to live on, and many don’t have enough support from family and friends to make up the difference. Some of us choose to work as freelancers or entrepreneurs, or want to support themselves financially as much as possible regardless of whether they can get benefits as a matter of self-image.

So it makes more sense, and is more humane and respectful of people’s freedom and dignity, to work to make the choices available to us safer, rather than entrusting an external authority to manage our lives and take away choices that we might need or want.

Authorities who take care of and protect us rely on systems that enforce power imbalances and structural injustices within our society. We see this when people of color, the visibly homeless, autistic people, and those who are foreign-looking and speak different languages experience a greater chance of being harassed or arrested (or worse) by law enforcement for the same actions as less marginalized people. Reliance on authorities can actively hurt us and make things worse for other marginalized people.

This doesn’t mean that I believe every law enforcement or social service employee is evil, controlling, or prejudiced. But the prejudices many people in a society have will inevitably carry over to an extent into the structure and practices of any large system that employs thousands of people and holds coercive power. That’s why the methods I advocate involve increasing our safety from the grassroots, from within our own communities.

We must be careful, though, even of ourselves, as sometimes our own instincts are born of imposed and internalized self-hatred or our own prejudices against other social subgroups. Sometimes we may think a place or situation is safe when our group is safe there but other groups have very different experiences.

A homeless friend told me that he appreciated that I hung out with him at the public library. Homeless folks gathered there during the day because they could hang out in public without having to buy something. The same week, after news broke that an angry man had murdered women across the country who had refused to date him, a female friend of mine blurted out on Facebook that she believed women were terribly oppressed in our society. Even when we weren’t murdered, she wrote, we were often harassed. So, she avoided all sorts of public places where she’d experienced sexual harassment, which included—most definitely—the San Francisco Public Library!

She did not say or necessarily mean that homeless people were the ones bothering her, but her words reminded me of a common problem. If we set up a chill community without oppressive social controls that keep certain people out, how do we make sure that privileged people don’t just take over the space and make others unwelcome? And, as individuals, how do we figure out what’s going on and how to avoid getting taken advantage of or harmed?

Obviously, it’s the responsibility of those who seek to harm or take advantage of others to stop that behavior, rather than it being the victim’s duty to avoid harm. I’m inclined to approach safety by empowering individual people and communities to make informed choices about what situations to be in and devise ways to make social encounters and life choices safer, rather than blaming or shaming victims for supposedly making bad choices.

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