I am saying this from the point of view of someone whose entire family is neurologically atypical in some (often significant) way, and the majority of my immediate family is autistic: My whole family is not autistic.
It’s not just the child who gets autism; it’s the whole family. And the family is autistic all day, every day.
I live over 3,000 miles from my parents and brothers. One of my parents is autistic, and one of my brothers is autistic. My other brother, and my mother, are not autistic, any part of the day, even if one or both are BAPpy.
No matter how involved in my life they are, they are not living my life. They are not experiencing what it is like to be autistic, they are merely experiencing, some of the time, what it is like to be in the proximity of autistic people, to love autistic people, to care for autistic people. There is a difference here.
This difference is often glossed over. People other than autistic people are said to write “first-hand accounts of autism”. Would a man dare write a “first-hand account of womanhood” because he married or raised one? Parents who are not autistic often call themselves “autistic parents,” thereby muddying the waters for those who are actually both autistic and parents. Would a man call himself a “female husband” or a “female father” just because he’d married or fathered a female?
This distinction is nonetheless important. It reflects whose voices get heard. If the non-autistic family members are viewed as having equivalent levels of experience with autism as autistic people do, then it becomes a little less important to hear from actual autistic people. After all, we can get “first-hand” accounts of autism from non-autistic people, and non-autistic people can call themselves autistic based on mere proximity with us. What would be the need for genuine autistic perspectives?
Not that non-autistic people’s perspectives are not important. But here is something Cal Montgomery says about these sorts of perspectives:
Publishers continually crank out books about the tragedy of disability, of which most may be classified as memoir by proxy: Nondisabled writers write not as representatives of their own experience (or observers of others’) but from the imagined experience of someone who has not licensed the portrayal. The best of these grapple with the limits of what the proxy can know, and struggle with the complicated responsibilities that arise when the choices seem to be either “speaking-for” or allowing the experience to go totally unrepresented. The worst, by writers who prefer spectacle to truth, invite nondisabled gawkers to a sideshow starring an alien mind in an alien life.
— Cal Montgomery, in Whose Movement Is It Anyway?
If my family had abandoned me, I would still be autistic, and some of them would not.
If my family dies, I will still be autistic, and some of them will never have been.
I believe that using “with autism” has become more than a cute little word-game in these instances. It has allowed people, particularly very word-minded people, to view “autism” as something that is not necessarily inseparable from an “autistic person.” It’s only one step from there to seeing “autism” as a thing that exists within a family, like an unwanted uncle that lives there and won’t move out, and that is no longer attached only to autistic family members, but instead to all family members. This separation of autism from autistic people is inaccurate. There is no such thing as autism. There are only autistic people. Autism is an abstractified version of a quality of autistic people, not a thing that can be possessed by, or that can possess, a person or a family. Putting autism separately from a person allows the word-bound to view it differently than it really is.
I was talking to Laura Tisoncik, a friend of mine who’s autistic, about staff. She was commenting about how they get respite hours in which other staff take over for them, to prevent them burning out. She said, “When do we get respite from burning out on them?”
The role of the caregiver (often but not always a non-autistic person — I’ll be temporarily in that role tonight, for another autistic person, who has been in that role for me at other times) tends to be, popularly, valued and celebrated as selfless and self-sacrificing. The role of the caregivee (when dealing with autism, usually an autistic person) tends to be, popularly, viewed as burdensome, an imposition on an otherwise normal life.
A caregiver can walk away. Even if they didn’t want to. Even if they never would. Even if they would not find it ethical to do so. They are capable of doing so. The possibility of escape is there.
A caregivee cannot walk away. There is no possibility of escape short of learning skills that for a lot of us are impossible.
There are entire organizations set up for the purpose of dealing with “caregiver burnout”. Which is a real problem. But it’s a recognized problem. And when it happens, people often hear things like “You can only take care of others for so long, it’s time to take care of you” and “You’re so selfless, you deserve a break” and things like that.
But people who receive assistance experience burnout too. We learn to try not to ask for more than the bare minimum of what we need. Often, “non-essential” aspects of the relationship go by the wayside as a result of the power imbalances. We are aware that, no matter how much the person frustrates us, we depend on that person for essential aspects of daily life, and therefore we cannot show it without possible penalties. We know that we can’t walk away.
If we get burned out, or even if we object to the way someone is doing something, we’re more often labeled ungrateful and selfish. “Be glad you get anything at all.”
Moreover, when “burned out” caregivers attack or even murder their caregivees, it’s often said, “Well it’s tragic, but it shows how burned out we can get.” When caregivees attack or murder our caregivers, then the whole group of people we belong to is classified as potentially dangerous, our caregivers are given more sympathy for having to put up with people like us, and all of us stand in danger of losing basic civil and human rights.
Of course, selflessness is not defined by giving, and selfishness is not defined by taking. Selfishness is about being wrapped up in your ego, and it can be just as selfish to refuse help you need, as to refuse to give help you can and should give. Selflessness is being less wrapped up in your ego, and it can be just as selfless to accept help you need, as to give help you can and should give. People can give “help” in selfish ways and receive help in selfless ways, as well as give help in selfless ways and receive help in selfish ways. Most people engage in a mix of both, not one or the other, no matter which side they’re on, and most people are on both sides of such relationships, not just one.
But the way such relationships are often portrayed, is very one-dimensional and one-sided, and uses standard views of giving as always selfless and taking as always selfish. We become burdens and ballast, they become heroes and martyrs. Even if any particular individuals don’t feel that way, that’s the stereotype that things get boiled down to. Just as, while particular individiuals may not intend their portrayal of the “whole family is autistic” to take away from autistic people’s political voice, it inevitably will.
And it is important to acknowledge, not only the power dynamics involved here, but the fact that, no, no matter how much time a non-autistic person spends with an autistic person, no matter how involved in our lives they are, no matter how much they give to us, no matter how much they love us, no matter how much they do for us, they are not autistic. They never will be autistic. But autistic people will always be autistic, with or without non-autistic people around. We are the only people who live as autistic people, all day, every day. This is more than semantics.