I wish we could cure autism. I understand that some people may not believe autism needs to be cured, and I respect that. Autism is a wide spectrum, and I know it well. There are many incredible people in the world with a type of autism that makes them unique, talented, special, and amazing. My two kids with autism are unique, talented, special, and amazing. But I don’t see their autism as a gift. It has been a struggle for them both, and it breaks my heart to see them struggle.
My daughter is 23 and developmentally disabled. She can’t spell, count or speak. She communicates only with an app on her iPad, but even then, it’s limited. She and I have a unique bond. I can tell what she wants or needs without her using words. That has taken years and years of work. I am now the Queen of Non-Verbal Communication. But I’m not always by her side.
She cannot understand why I want her to brush her teeth or wear clothes. She can’t tell me if she has a headache. She can’t say if she has a sore throat. She can’t express when something is too hot or too loud. When she wakes up in the middle of the night and can’t tell time, she can’t understand when I tell her it’s not time to wake up yet. When she asks me for a drink and I say no because I don’t want her to wet the bed, she doesn’t understand my reasoning. She doesn’t know danger or judgment. She has lady parts and feelings but doesn’t understand them. She will never get married, or earn a living wage, or be independent.
Both of my kids are on the spectrum, at extreme ends. My daughter needs help with the toilet and the shower. She doesn’t understand danger, so I must hold her hand wherever we go. In one week, we are moving her into a group home because she will need round-the-clock care forever and I won’t live forever. If you think I made that decision lightly, think again. I am haunted by it. I am nauseated by it. I am dreading it.
When I speak about the type of autism that needs a cure, I speak about those who struggle every day. Those who hit themselves and their parents out of frustration. Those living in homes with locks on the doors so they can’t get outside; with locks on the refrigerator so they can’t get in and gorge themselves sick. Those who can’t cut their food, or open a jar, or pour a drink. Those who wear diapers at night.
Even my son, I wish it had been easier for him. He is 25, a musician, drives a car, has a full-time job, a bunch of friends and a girlfriend. But I think how hard it was for him to learn his ABCs and 123s before he got special help. I think about how he was bullied in his freshman year of high school, taken advantage of because of his naivety. I think about how he had to take special classes to learn basic social skills. I think about how much he struggled to pass his community college tests. I think about how long it took him to gain confidence and shine.
I wish they didn’t have to struggle so much. And I blame that on autism. Autism has made it hard for them to do and understand things that come so easy for so many others. It’s not fair. Life shouldn’t be this hard for them. It makes me angry. And I blame autism.
I want a cure, and I want it fast. But I’ve been studying this disorder for a long time. I have also been living this life long enough to understand that there isn’t an easy answer. If there was, we would know it. Autism is a complex condition with a wide range of symptoms, challenges and strengths. It’s like an umbrella for so many different issues. No two people are alike. And I say people because this is not a kids’ issue. It’s a lifelong issue. It is a complicated topic, and I’m grateful it’s getting the attention it deserves.
I will never give up hope. But we need to be realistic. Autism is not going away.
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