Why My Kid Rejects Your Cause and Doesn’t Need Your Cure

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My son smiling with a LEGO figure
Photo by Marziah Karch

 

My son has autism. That means his life is ruined. At least it seems to be according to people like Robert Kennedy Jr.

Kennedy still thinks vaccines cause autism. He’s also managed to make some pretty offensive remarks about autism just in time for “Autism Awareness Month.”

First, there’s this statement.

“They get the shot, that night they have a fever of a hundred and three, they go to sleep, and three months later their brain is gone,” Kennedy said. “This is a holocaust, what this is doing to our country.”

Setting aside how wrong he is on the science, listen to the incredibly offensive things he’s saying here. “Their brain is gone.” So my son’s brain is gone? A holocaust? You know, my son would have been murdered by the Nazis for his disability. What you’re saying is that kids with autism are essentially dead.
To be fair, Kennedy apologized for using the word “holocaust.”
“I want to apologize to all whom I offended by my use of the word holocaust to describe the autism epidemic,” Kennedy said in a statement. “I employed the term during an impromptu speech as I struggled to find an expression to convey the catastrophic tragedy of autism which has now destroyed the lives of over 20 million children and shattered their families.”

But his apology is still offensive. He’s telling my son that his life is “destroyed” and he’s telling me that my family is “shattered.” By the “catastrophic tragedy” of autism.

Far from it.

Life for us does look different. My son has huge communication gaps and needs more supervision than other children his age. He has an aid help him in school. He freaks out around dogs. He does not cope well with changes in his routine, and he sometime melts down when things don’t go his way. He will likely need external supports for the rest of his life. But if you’ve ever met him, you’d know he’s incredibly sweet and charming. He’s one of the happiest people I’ve ever met. We spend far more time laughing than we do crying together. He’s not what I fantasized when I started my family, but now I couldn’t imagine a different life.

When you have a child, you also have a fantasy child. Your fantasy child may be a rocket scientist or the next president or a basketball star, but your fantasy child is still just a fantasy. Eventually, you realize that your child will choose their own path, and it likely won’t match the imaginary one you chose for them. It’s no reflection on your parenting skills.

All a parent wants–really needs–is a child that is capable of happiness and love. We get confused for a while and think that the things we imagine bringing us happiness will bring our children happiness, but it doesn’t work that way. You have to stop raising your fantasy baby and start raising the child you have. I just had to give up my fantasy baby a little sooner than the parent of a typically developing child. His happiness doesn’t look like my happiness, but it doesn’t have to. He’s his own person.

My son doesn’t need bad science. A fake cause. Something to blame. Sometimes things just happen for no known reason, and that’s OK. I can’t go back in a time machine to kill a butterfly and change things, and even if I did, I wouldn’t have my son. I’d have some other child that looked like him but wasn’t the same child I know and love now.

My son also doesn’t need a cure. He needs speech therapy and supports and help adapting to a neurotypical world, but “cures” are just more fantasy babies. Let them go. Focus on living in harmony and happiness with the autistic people we already have in our lives.

We really need to stop thinking of autism as the worst thing that could happen to a family. Dying from measles because some son of a politician told you not to vaccinate would be far worse.

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7 thoughts on “Why My Kid Rejects Your Cause and Doesn’t Need Your Cure

  1. My son is autistic as well. But life isn’t all sunshine and roses. We’ve been through the speech therapy. He goes to a spec ed school for high functioning autistics and ADHD kids. I don’t believe he got his autism through vaccinations, but rather through genetics. That said, I do want a cure of some sort. Why? Because if it helps him find clarity in the things around him, helps him better understand how to read social interactions, diminishes some of his sensory integration issues, and helps him with his obsessive, overemotionalism, I’m all for that. I wouldn’t take away his creativity, his humor, or what makes him a fun and smart person, but the things that make him autistic ARE so hard on him, especially now that he’s a teenager. It’s also a soul-sucker on his dad and I. We are burnt out, and we may still be in for another 14 years of this, minimally. He’ll have a temper tantrum/meltdown for the 498th time after we’ve explained until we’re blue in the face that no, he cannot have a new gaming system because they cost too much money, no matter how many times he researches and finds something cheaper. He doesn’t want to go on vacation anymore–we used to take him to certain places because HE wanted to go, not because WE wanted to go, and now he just sits in a hotel room watching TV, which he does plenty of at home. There gets to be a point where it is unbearable, and you want to conduct a “normal” life, and your child is what’s holding you back. I would like to move to a place where there’s more job opportunity, but because I don’t want to mess up his IEP and start over again (it happens, despite the fact that school systems are supposed to follow them), we have to stay here at least until he graduates from high school to ensure he gets what he needs. There are so many limitations to him and the rest of the family that it does take a toll. So if there was a treatment to take some of the worst of this away? You bet I’d sign him up for that. Being Aspie myself as well, I know it’s a hard life, and anything I could do to take those difficulties away, I’d do in an instance. It can be too much for anyone.

    1. You know, I really hate getting into the whole “Queen for a Day” aspect of it, but I do understand where you’re coming from. We’ve never been on a real vacation with the kids in part because my son was not fully toilet trained until he was nearly ten. We moved to another state in part because our state was privatizing and cutting disability services, and he’d probably still be on the waiting list for services by the time he graduated college. I get it. I really do.

      But there are two things going on here. The first is how society reacts to disability – not enforcing the IEP, thinking a tantrum must be a spoiled child, cutting funding. An autism cure would not fix that. The second is how we help our kids be the best they can be. That isn’t with a cure. That’s with treatment. We hired a psychologist to help with the toilet issues, for example. We have speech therapists, and occupational therapists, etc. And if there were a medication that eased troublesome symptoms, we’d be open to trying it. By saying we don’t need a cure, I’m not saying we don’t need help.

      There’s nothing that will replace either of our children with a typically developing child, and there never will be. That horse has left the barn. It is a fantasy. Rather than holding onto that fantasy, I choose to let it go.

    2. Maybe he doesn’t like vacation because to him it seems like a big waste of money when you can’t afford a gaming system. I don’t understand how you have to money to take him on a vacation, but not to get him the console. Maybe I’m reading to much into this and he wants a ps4 to go with his xbox one and wii u, but being autistic myself I’m reading this as you discouraging him from playing video games. As much as hobbies mean to the average person, because autistic people are that much more obsessive and focused and detail oriented, we need them that much more. Whether it’s staring at Mario for 6 hours or obsessing over a dictionary, then weird quicky obsessions that nt people view as being symptoms of autism are actually autistic people’s ways of managing their autism.

      1. I’m on the spectrum myself, so I understand what you are saying. But vacation time is also a time to encourage socialization and using those socialization skills hopefully in a fun way, even if it’s just mom and dad. Mom and Dad need a break too, so getting away as a family is something that we try to do only once a year.

        And do you know how much a PS4, plus a new gaming computer is–before you even buy games? More than a vacation! And the vacation memories will last longer! My son also shouldn’t think that just because he asks for it, he’ll automatically get it. He’s at an age where he needs to understand that it takes a lot of work and time to earn the money to buy those things. If he’s handed these things on a silver platter every time, where does it end? How does he learn the value of a dollar? Even the systems I got I was only able to get them because of saved up credit card points that were traded in for Best Buy gift cards to bring the cost down significantly. The next thing he’ll want soon after getting a $500 gaming system or the $1K+ gaming computer is a car. And I’m not buying him a new car.

        He can start doing what other teenagers do, and get a part-time job, and earn the money himself, just like his dad and I did. (And yes, computers were around when I was his age, and I was obsessed with them too, but my parents wouldn’t buy me a gaming system, and we only had a computer in the house because my father brought his work computer home with him. This translated later into a computer career for me, and I didn’t suffer.)

        There’s a principle behind all this. My son needs to be out in the world, because that is reality. He needs to be able to interact with others as he learns to become independent. He’s not going to do that by accumulating gaming systems. He will do that by going out in the world now and then, actually interacting with LIVE PEOPLE (more than an online connection, so don’t go there), and learning about the rest of the world. Vacation with his parents is a low-risk way of exposing him to new situations and places. We usually go where HE wants to go anyway! We’ve been sick of the beach for years! He’s only not looked forward to vacation in the last year. We are open to alternatives, but his teenage behavior makes it difficult.

        Oh, and he brings as much gaming stuff on vacation as he can, so that’s a moot point.

        1. Well that’s what I was wondering if he had no games at all, or if he just wanted excessive games. I wonder how hard (probably really hard, which is why I don’t have many friends) it would be to fin some people who want to socalized with Jim over gaming, like on meet up. I’m autistic and the geeky/gamer/anime convention friends I have always have a friend here or there who is autistic. I guess it also depends in the level of disability, but some of these kids were obviously autistic, you could tell from the minor stimming and how they communicated,but they were also legit good close friends, not some kind of pity story. Although the most socially adept geeky kids aren’t exactly the most normal. I wish there was a better way for autistic people to find people to socialize with, other autistic people and non autistic people. I would totally try meet ups and go with him and look for an appropriate friend who has all these nice things and then he can go to their gaming parties. There’s nothing more fun than a room full of “different” people and super smashing brothers on the screen.

          If you google around, you can find a lot of testimonials like “I had no friends and was a big loser, so all I did was play pokemon. I started wearing my ash Ketchum hat and Pikachu Keychain and now I have ALL the friends”. A year of obsessing over your favorite franchise because you have no friends can lead to you having all of the social status when you analyze it to depths that leave the other geeks stunned.

  2. My son has autism. I agree it’s not the worst possible diagnosis in the world and when people inflate it to sound like kids are dropping dead in the street or are zombies, it pisses me off.

    I do want a cure and better treatment options. Not for my son, but the next generation. Too many kids with autism also have other problems, one example is seizures. If we could eliminate the most extreme end of the spectrum (early intervention, gene therapy, something) and some of the secondary conditions so that having autism is no more destructive to a normal adult life then having to manage diabetes or IBS, that would be awesome. (Let me define normal adult life: able to hold a job, communicate with others, live independently, have their own family, etc.) A lot of autistic kids will be fine with therapy and understanding, my son is one of them, but many aren’t.

    1. Treatment options are different than cures though. We do need more treatments and more valid research. I’m talking about this idea that we’ll find the right pill or combination and will suddenly have a child that matches our fantasy child. As if there’s a different child lurking inside our own. I’ve seen too many parents buy snake oil after snake oil with this idea that they’re suddenly going to find a cure.

      (Seizures are also different than autism. They’re often co-morbid, but having seizures does not mean you have autism and having autism does not mean you have seizures. /nitpick)

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