I speak a lot about the impact that autistic adults have had on my life, and in turn, on my children’s lives. I write often about the invaluable insights that I have gained from my conversations with those who so generously share their own experiences and so freely offer up their unique perspectives, so often dramatically different from my own.
I know I’ve said it here a thousand times, but I’m saying it again – I am deeply grateful to those who open their lives and who subject themselves to scrutiny in the name of a better world, not just for themselves, not just for those who come after them, but for all of us. I don’t know where I’d be without their help in unraveling the mysteries of autism, in understanding what it means to look at the world through its filter, in learning not to rely on words for communication, in opening my eyes and my heart to the value of difference and the responsibility inherent in occupying a position of relative privilege.
Amy Sequenzia is one of those people. Her writing has changed me. It has made me a better mother, a better friend, and a better person.
It’s tough to write an introduction for her because, like all of us, Amy doesn’t fit into any of the tidy little boxes that we so love to create out of words. The few that fit are these – she is Autistic. She is an advocate, an activist, a writer, and a poet. She is also non-speaking, but she has an awful lot to say. And, as she shows me every time she puts finger to keyboard, we have an awful lot to learn from her.
The following is one of my favorite of Amy’s posts. In it, she challenges the “usual” concept of independence. So many of us, as parents, use independence as a yardstick for our children’s success. And, I’d argue, rightfully so. But only once we’ve freed ourselves and our children from the confines of our stale and inapplicable definition of the word and begun to allow us both to explore, foster, and celebrate a new concept of independence - one whose foundation lies not in self-sufficiency but in self-determination.
I am so grateful to Amy for allowing me share her words here. It’s an honor to turn this space over to her.
Throughout my life I heard comments about how difficult everything would be for me, how I would never be independent, or have an independent life. If I could grow up to live independently, I would prove that my life had value. If the perception was that I would become an adult who could not live independently, that would prove that I was too damaged, that my life would never be fulfilling.
It was said that my future would be very bleak because of the many needs I have, because I communicate in a different way, because I cannot take care of myself.
All this is true and I wish I didn’t need the amount of physical support I do; I wish my choice of method of communication was more mainstream; I wish I knew why I cannot translate my knowledge about safety into actions. But I am who I am and, at least for now, those are issues I have to deal with.
If you met me, you know that I am not exaggerating; if you know me more intimately, you know that my needs can be even more pronounced.
But my brain is always working hard, even after a seizure, trying to catch up and coordinate with my uncooperative body. My brain is very independent.
Independence is a subjective concept. I am sure, though, when the conversation is about the “impossibility of an independent life” for people who need more than a little help from others, independence means being able to do basic things like preparing a sandwich and eat it without making a mess; it is about being able to get fully dressed, without assistance; it is about being able to move around unassisted; it is about being able to do the things I want and need to do without someone providing the physical and logistical support.
I cannot do those things. I need help with everything.
Except, I can think and I can make choices. If my body is very dependent on other people’s help, my brain is not. And if I have the right people around me, and the right support, I am as independent as any other person.
Like I said, independence is subjective. Most of us, autistics or not, depend on someone else for something. Things are mostly in place for neurotypicals – or at least their way of doing things is considered the “normal independent way”. Independence is defined according to what neurotypicals need.
Autistics have different needs but we still live by, and are expected to follow, neurotypical definitions of independence.
Some of us are able to develop accommodations and can be “successful” by neurotypical standards, to live a more or less independent life. Others might have a very independent life, by any standards.
I can’t. So I am challenging the usual concept of independence. The way I see it, I lead an independent life.
I left home when I was 11 years old to go to school and by the time I was 19 or 20 years old I was living with friends. I share a home with them, it is our home, and my choices are respected. My friends’ choices are also respected and this is possible because we chose to live together.
They are not simply “taking care” of me, they are supporting me with the goals I set up for myself, which I can only achieve with help; and I don’t feel they think I am a “job” or a “charity” we share our lives and we learn from each other. They are my friends.
- I am grateful for their help with the things I cannot do by myself. But I also know that I contribute positively to their experience.
- Independence, or living an independent life, is different for each person.
- If independence means not living with your parents when you are an adult, I am independent.
- If independence means being able to make choices and accept consequences, I am independent.
- I can’t manage money or schedules, but I can let people know how I want to use my money and what I want to do.
- I have physical needs, so do lots of people, for different reasons.
- I do things differently; to me, having an independent life is also different from how other people are independent. I live my life the way I choose to. How is this not independence?