Image of a pen on paper with a checkbox labeled “I Agree.” Text says, Their "niceness" is seen as success. I see compliance. I see a dependency of others telling them what and how they should feel, do, want, hope for, choose, live. ~ Amy Sequenzia, “Real Independence,” awnnetwork.org

Real Independence

Most people believe that the only valuable life achievement of a disabled person like me (non-speaking Autistic with high support needs) is “to be independent”.

I already wrote about how the concept of independence is ableist. In short, it is not our ability to live by ourselves, or to care for ourselves that makes us “independent”. Being an independent thinker is the only real independence.

I have been thinking about this a lot because I have seen so many parents of Autistic adults telling their

Image of a pen on paper with a checkbox labeled “I Agree.” Text says, Their "niceness" is seen as success. I see compliance. I see a dependency of others telling them what and how they should feel, do, want, hope for, choose, live. ~ Amy Sequenzia, “Real Independence,” awnnetwork.org

Image of a pen on paper with a checkbox labeled “I Agree.” Text says, Their “niceness” is seen as success. I see compliance. I see a dependency of others telling them what and how they should feel, do, want, hope for, choose, live. ~ Amy Sequenzia, “Real Independence,” awnnetwork.org

children’s stories, while praising ABA for helping their children “succeed” and “become independent” – meaning having their own place, and doing things like dressing themselves.

Since I know some of these parents in the face-to-face world, since I have met them and their Autistic children, I want to point out the biggest flaws in their assumptions, and the biggest, most dangerous learned “skill” of ABA.

First, I am basing this article on what parents have told me, and publicly shared, about their adult Autistic children.

This is already a problem. Why are the parents sharing these stories? Aren’t the Autistics they talk about “independent”? Shouldn’t Autistics tell their own stories? Should independent Autistic adults choose if, and when they tell their own stories?

Second, I see parents telling their “independent” Autistic adult children things like “say hello”, “ask your friend if they…”, “look at your visitor”. Where is the self-determination, the freedom to interact, or to not interact? Why are they being told to look at people without any thought about their desire to look at someone? How is this coaching considered “independence”?

I also met with parents and their Autistic adult children, and had parents correct me, in the middle of the conversation, that their adult children “always use Person First Language”. Why is this even relevant? We should be allowed to use whatever language we decide when speaking about ourselves. The Autistic person never “corrected” me, or asked me why I use Identity First Language. They didn’t tell me it bothered them that I was using Identity First Language. The parent was bothered though, and felt the need to point out an assumption about their adult child, without even consulting the adult child.

One thing all of them had in common was years of ABA. They were all nicely compliant, never resisted commands, never disagreed with their parents, never said “no”. Maybe they were overwhelmed, like I often am, but they complied with a somewhat forced interaction with me.

This is the dangerous “skill” that ABA teaches Autistic children: the need to be agreeable and compliant. If an Autistic child is taught that saying “yes” gives them rewards, while saying “no” brings more drilling, more testing, more “convincing” from the ABA practitioner, that child will grow up to be an adult that avoids expressing their own thoughts freely. They will always seek the approval of a parent of someone assumed to have more “authority”.

Their “niceness” is seen as success. I see compliance. I see a dependency of others telling them what and how they should feel, do, want, hope for, choose, live.

The Autistics adults I’ve met live in their own place, they can work, some can cook a meal. They can dress themselves, they are safe when walking on busy streets. That’s independence, right?

Actually, it is not. There is a lot they achieved and probably some of it is because of their own developmental journey but their parents still micromanage every aspect of their lives, including dictating what activities they can participate in, who they can have as friends, where they can go.

So, these “Independent Autistic Adults” can do a lot of things with very little or no support, they can “fit in” the neurotypical society, but they still cannot make real independent decisions about their lives. Their parents decided that they should follow the same life trajectory as their neurotypical peers, even though they are not neurotypical and maybe don’t want to do things “the neurotypical way”.

I understand the need for safety, the need for a trustful staff or support person. But living on one’s own without being able to make one’s own choices, and even making their own mistakes, is not real independence. Not knowing how to choose, not knowing that we can and have the right to choose is what ABA teaches. It teaches Autistics to emulate neurotypicality, while rejecting and/or hiding their “autisticness”. That’s not success. That’s a dangerous failure.

Independence is a myth imposed on us by a normalizing society. It is ableism. I have an independent mind, and I practice interdependence. That’s how I lead my life, that’s how I make my choices – with people who will keep me safe, support me, enjoy my company, value my input, allow me to disagree, learn together, share experiences. It is not always easy, it can actually be very difficult sometimes. But it is possible, and it is real.

I practice interdependence with people who also depend on me for things that are important to them and that they cannot achieve on their own.

Yes, this happens. But that’s not my story to tell. It is their story to tell, so you will have to ask them. They also have an independent mind.