It bears repeating, because it comes up over and over again… especially in April. Someone talks about appreciating neurodiversity (“all kinds of minds”), and says positive things about autism or about being autistic or about having kids on the spectrum… And some parents always respond with something like this:
“Autism isn’t a blessing, it’s a curse. It’s fine for you ‘high functioning’ types to talk about your advantages. Well, my child is different. Your kid is in high school with a classroom aide? Ha! My kid can’t spell their own name. Can’t sit at a desk at all. Hits. Bites. Screams. MY KID WEARS DIAPERS.”
(As a culture, we are absolutely obsessed, in a bad way, with bodily functions. The shame we teach our kids about what comes out of their bodies and how to deal with it is mentally unhealthy. We act as if the entire worth of a human being, and their whole capacity for dignity, is based on whether or not they can wipe their own bottom. We need to get over this hang-up. Desperately.)
I’m a caregiver for Those Kids.
The ones who can’t speak, or type (At least not yet! Some autistic people acquire that skill as adults).
The ones who can’t sit still, stand in one place, or be quiet (You don’t need to sit, or be quiet, in order to learn).
The ones who put everything in their mouths, including sand or worse (Just for the sake of perspective, food poisoning from actual food is probably a bigger risk than anything you’ll find in the average mouthful of dirt).
I’ve been bitten, hit, kicked, scratched, and spat on. (Sometimes I deserved it. Sometimes I was just in the wrong place at the wrong time. Stuff happens).
I’ve changed the diapers of someone bigger than I am. (Was it fun? Of course not. Cleaning my own bottom isn’t particularly enjoyable either, and neither are a lot of chores I do regularly. That’s life).
Yes, I spend my time with Those Kids. And I can say, without the slightest hesitation, that my clients are… Wonderful. They are awesome people. I’ve been with some of these kids and teens for years. I’ve known some of them for half their lives. I have watched them grow and learn, laugh and love, feel sorrow and joy. They are caring and clever, funny and quirky, surprising and sensitive. I love them unconditionally. I wouldn’t change them for the world.
Yes, their lives can be challenging. Challenging for them. Challenging for the people who love them but struggle to understand them and meet their needs, especially in a society that offers very little support or empathy. A lot of the truly worthwhile things in life are challenging. Learning to accept and appreciate autism on its own terms is one of them.
Life isn’t always easy. Love isn’t always easy. Autism isn’t always easy. Embrace them all anyways.
If you are stuck in the mental trap of thinking that a profoundly autistic person must have a miserable life, or needs to be made less autistic, please seek out memoirs and essays by people with disabilities of all kinds. You will find that most people who strike you as very different — people born blind, or without legs, or with Down Syndrome or epilepsy or Tourette’s– are, in fact, pretty normal. Most don’t feel that their lives are tragic or lacking in any way. They usually don’t want to be fixed, or cured, or changed– just accepted for who they are and accommodated so that they can have the same opportunities as others. They also don’t want to be seen as inspirations, or applauded for overcoming their challenges.
Most people with disabilities, physical or mental, are simply ordinary people leading ordinary lives. It’s just that their normal looks very different than your normal. “Normal” is in the eye of the beholder.
Some people with disabilities have careers. Others never work. Some get PhDs. Some don’t graduate high school. Some get married and raise children. Some can’t. Some live with 24-hour caregivers, or have a nurse visit every day. Some write poetry or make artwork. Some tell great jokes. Some are shy, and others are outgoing. Many people walk around with unseen disabilities, like dyslexia or chronic pain. And many work tirelessly to teach the world a better understanding of disability. I owe them so much.
They have taught me — and I want to teach you!– that the worth of a human being isn’t in their ability to earn money or medical degrees. A person who uses a wheelchair is as just valuable as one who walks unassisted. Someone who is completely nonverbal counts every bit as much as someone who speaks. People have what philosopher Immanuel Kant called “intrinsic worth.” We are worthy simply because we exist. Each person is utterly unique in the universe. We all have the capacity for love. We are all born worthy of being loved.
So the next time you catch yourself thinking about what your autistic kid can or can’t do, or how much they drive your crazy, or what their future looks like, put your brain on pause.
Take a minute to think instead about how their smile brings you joy. Think about their own joy, and how you can help them find it. Think about the beauty of their face, the sound of their laughter, or the tenderness of their hand touching yours. Think about precious moments you have shared (and if you can’t think of any, start making them now!). Appreciate their very existence. Take a deep breath and let go of your worries, your expectations, and especially your comparisons to anyone else. Just be with your autistic child, in the moment, and love them with all your heart.
You will realize that the love you share is more important than the objects they broke or their IQ score, or whether they will ever tie their own shoes. Erase your ideas about what the future “should” look like and start over, from scratch. Invent your own “normal,” one that makes your family happy, no matter how strange it looks to outsiders. Help your child accomplish their own goals, chase their own dreams, and live their own best life. And you will find that you are living your best life, too.