This is a contribution from Amy Sequenzia, who blogs with both Autism Women's Network and Ollibean. She is an Autistic activist, writer, and poet.
One concern every parent has is how to make sure their children grow up to become independent adults.
Parents of autistic children seem to worry too much about the goal of “being independent”, as if this concept were not a complex one.
What is independence anyway?
Is anyone truly independent?
The answer to the second question is: no.
Every human being depends on at least a few others, from general things like the availability of food for purchase, to some service requiring a certain type of expertise, to financial support through a job or costumer (in case of self-employed people), to emotional support.
Some parents of autistic people worry that their children will never be able to cook a meal, shower or live independently. Their (erroneous) conclusion is based on the perception of the “severity” of their children’s autism.
First, some autistics (the “not-severe”) who can hold a job, who are married and with children, for example, have a very hard time remembering when to shower and when to eat.
But I am in the group of autistics who, supposedly, would never be independent.
Yet, independent I am.
Because independence does not mean living by myself or doing all things without help. Independence is about self-determination, about setting my own goals, about knowing what is important to me.
I chose to live with friends and we worked out an arrangement that works for all of us. They are my roommates, not my caregivers. I accept the difficult aspects of my life and welcome their help. Then I can enjoy my autistic self and work on my life’s goals.
Communication is important and my parents made sure I have access to a method of communication non-autistics can understand. Then they let me grow up. As an adult, I make my decisions and I fight for more autonomy. I am learning responsibility. I have friends.
This is independence, even though I still can’t eat or shower by myself.
One concern every parent has is how to make sure their children grow up to become independent adults.
Parents of autistic children seem to worry too much about the goal of “being independent”, as if this concept were not a complex one.
What is independence anyway?
Is anyone truly independent?
The answer to the second question is: no.
Every human being depends on at least a few others, from general things like the availability of food for purchase, to some service requiring a certain type of expertise, to financial support through a job or costumer (in case of self-employed people), to emotional support.
Some parents of autistic people worry that their children will never be able to cook a meal, shower or live independently. Their (erroneous) conclusion is based on the perception of the “severity” of their children’s autism.
First, some autistics (the “not-severe”) who can hold a job, who are married and with children, for example, have a very hard time remembering when to shower and when to eat.
But I am in the group of autistics who, supposedly, would never be independent.
Yet, independent I am.
Because independence does not mean living by myself or doing all things without help. Independence is about self-determination, about setting my own goals, about knowing what is important to me.
I chose to live with friends and we worked out an arrangement that works for all of us. They are my roommates, not my caregivers. I accept the difficult aspects of my life and welcome their help. Then I can enjoy my autistic self and work on my life’s goals.
Communication is important and my parents made sure I have access to a method of communication non-autistics can understand. Then they let me grow up. As an adult, I make my decisions and I fight for more autonomy. I am learning responsibility. I have friends.
This is independence, even though I still can’t eat or shower by myself.
Yes. So much of my time growing up was spent on tasks that I could not do (or could not do without help) that I missed out on learning a lot of important skills.
ReplyDelete"Because independence does not mean living by myself or doing all things without help. Independence is about self-determination, about setting my own goals, about knowing what is important to me."
ReplyDeletethis, this, a thousand times this. thank you, amy.
Yes. Yes. Yes. Autistic who has held jobs, is a parent, is building a business and still has trouble remembering to shower or eat periodically.
ReplyDeleteI am diagnosed on the spectrum myself, and I want real independence because I really need it. And not just to benefit myself. Self-determination and decision making is an incomplete and empty guarantee without the basic means with which to accomplish tasks and to do basic things for myself without being tied to others to get through life. Getting to set my own goals hasn't bettered me much when I have no viable options to choose from. Having to live with others due to my impairments dictating my living arrangements, rather than personal choice, is irritating and uncomfortable for me and those around me. I've tried to work around my disabilities. It never works.
ReplyDelete