Autism Cure
I have a friend, who I love and respect, who thinks that people who support finding a cure for autism are awful, hateful, discriminatory people who are just afraid of people different from them. Because there is nothing wrong with her or her boys, each with autism. And I get that. I can see how her experience with autism makes her feel protective of neurodiversity.
And then there’s me. My son has the kind of autism you don’t see on TV. He isn’t a savant. He can’t do impossible math or speak six languages or paint landscapes from memory or memorize medical information and perform intricate surgeries. He can’t even fully dress himself yet. It’s not “cool” like those with special abilities. It’s not something to be in awe of.
He cannot speak, save but a random word once a year or so. We haven’t had much success with augmentative communication devices, PECS, or sign language. It is exceedingly difficult for him to communicate his most basic needs. He has behaviors as a result of this lack of communication ability. And now that he’s 12, it’s not cute anymore. He’s not the sweet kid in the shopping cart giggling uncontrollably at the toy he’s holding anymore. He’s the massive man-child naked and screaming in the middle of the grocery store check out lane. Yes, it’s happened. His autism is a true disability, and he will need care for the rest of his life.
And you know what? There’s nothing wrong with my boy, either. However, I would take his autism away in a second if I could. Why wouldn’t I want to make my child’s life easier? Why wouldn’t I want him to stop suffering? Why wouldn’t I want him to be comfortable and happy?
So would I be okay with an autism cure? You bet your ass. If my child had juvenile diabetes, I’d want a cure for that… and if my child had cancer, I’d want a cure for that. When my child has a pain or illness, I take steps to alleviate that… so why wouldn’t I hope for something to ease his autism symptoms? It doesn’t mean that autism scares me or that I think people with autism are weird and don’t belong or any of that nonsense.
Random reader here…..I have met parents who have taught their autistic children sign language to communicate…maybe you and your son can both learn America Sign Language?
@jaythesmartone
Hello! We have tried numerous times to introduce basic signs. I should edit the post to indicate that. My son hasn’t shown the ability to use sign language effectively, apart from one sign that’s kind of made up but we generally know what it means for him. He stims a lot with his hands, making it even more difficult.
@misty Yeah this mom I was talking about said her son has different signs from the “norm” but it works for them. I am sure one day he will just learn to communicate one way or another when he thinks he has something to say.
@jaythesmartone
He already has a lot to say. He’s just unable to. I truly do hope one day he is able to communicate his needs, his wants, his hopes and dreams effectively… but it would be unfair to assume such a miracle is on the brink because it makes me feel good. This way of thinking diminishes the severity of his disability, whether it’s meant or not.
@misty I hope I didn’t make any bad assumptions here…..If it’s okay with you maybe you can and will educate me so I don’t keep saying stupid things and the obvious?
@jaythesmartone
Much like my post was trying to convey- everybody has their own experience (or lack thereof) with autism. Half the battle is in the willingness to have the discussions, especially with those who have differing experiences. I haven’t written a lot here in many years, but I have always been happy to share our experiences so that others may better understand.
@misty I have a question for you? My son is 33 and he thinks he has adult onset Autism…..Is that a possibility? The only thing I have noticed with him over the years is he is very disorganized and is really crappy at managing almost everything, like money and keeping his space clean.
@jaythesmartone
I’ve never heard of anybody “contracting” autism past toddlerhood. I would think if he feels like he hay have autism, he has likely had it his whole life and didn’t know why he was different until now. I will say that my daughter is similar (disorganized) and we feel she probably has autism as well for a great many number of reasons. It’s just very different from my son’s variety.
@jaythesmartone
Plenty of people are getting autism diagnosis in adulthood, though, so if he feels strongly about it, it’s worth talking to a doctor.
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does she feel we should not cure cancer or diabetes too?
@kaliko
I’m not sure. I haven’t the strength to engage her in the discussion yet.
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My 40 year old niece is autistic. Not verbal but she dose have some functions – she lives in a group home and maintains her own room and a small job. My 3 year old granddaughter is mildly autistic and will be regarded as ‘strange’ her whole life because she doesn’t react to social cues like most do. Different ends of a spectrum, but, yeah, both would benefit from not having to deal with the condition. While a burden may make one stronger, it can also crush.
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My ex-boyfriend we are pretty sure had Asbergers and to be fair, I think a lot of the engineers working in the tech industry are on the spectrum to some extent. Especially their high level of math/science knowledge and the ability to have that laser focus but get distracted or derailed easily
I am sure that your friend has her defense shields up, because to her, her kids are perfect, autism or not, and she’s probably feeling that people are judging them and maybe her with their fights for a cure. I truly believe all of our kids are perfect, regardless of what ails them. I am sure being a mom of an autistic child you are in the perfect place to relate to her but you clearly have divergent ways of thinking about handling all that comes with an autistic child
There’s so much to learn, the spectrum is long and varied. I wish you peace in your trying moments with your son, and I hope he can break through to speak all that he has held inside him
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Any good loving mother would take away the pain or even experience it for their child if they could. Doesn’t make anything wrong with you. It is being a mother. 💖
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I don’t know you and I don’t know your boy so I won’t judge your situation, but please try speaking to some experts to get him help. and by experts i don’t mean medical professionals, I mean autistic adults. If anything can possibly help, its people who have been where he is and have learned to better communicate as they grew up. I bet inside that head of his is a pretty awesome kid who just hasn’t figured out how how to communicate to you that the world is causing him a lot of pain. Its too loud, it’s too rough, it’s too bright, it’s too a lot of things for him. A lot of autistics, instead of finding a cure, hope for space in this world that is appropriate. It’s more like the kid in the wheelchair, who that’s all they’ve known, its not that they want out of the wheel chair because that’s part of them, it’s that they want to play with other kids, so build them accessible parks, play games in gym class that are fun for all mobility levels, make sure that ramps are the norm and not that thing that they have to go out of their way to use. and suddenly that wheelchair isn’t much different than black/blue/blond hair. it’s a part of them and there is space for it in this world.
I hope you take this as it was intended, as a different perspective that may help you see things the way your friend sees things and not as an attack on your view.
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