Three Reasons I am Grateful for Autism
by Shannon Aronin on July 5th, 2015

​​​I don't usually think of autism as a blessing. It's not a blessing that my kid doesn’t have friends, is super literal and can’t stop with the echolalia noises that drive me so bananas. It's not a blessing for families with non-verbal kids that they don’t know what’s in their hearts or on their minds or even what hurts when they are in pain. It's not something to be grateful for when it's paired with cognitive impairment. I support research to identify effective treatments and a cure. This is sometimes a controversial stance so I want to make it clear: this is not a post about how autism makes you stronger, and I am not suggesting that we shouldn’t try to fight this disorder.

​My Boo was recently diagnosed with autism spectrum disorder (ASD). I was so deeply relieved. I doubt many parents have ever been so pleased to hear the word autism. Here's why:
1. Unlike the previous diagnosis of social pragmatic communication disorder (SCD), ASD is a label that entitles him to services provided by the State of California that was recommended by the doctor who diagnosed him with SCD – Applied Behavior Analysis (ABA). We think ASD is more accurate, but it’s iffy. It’s just a word though, and he is the same kid when we walked out of the neuropsychologist’s office with a diagnosis of SCD as he was when we walked out of Regional Center with a diagnosis of being “on the spectrum,” as he was before that.

This has brought up an interesting medical ethics question that is more academically interesting when your kid’s life and treatment aren’t hanging in the balance. If a patient is really close to two separate diagnoses, is it more ethical to give them the diagnosis you think is wrong or to give them a diagnosis that precludes access to the very treatment recommended for both disorders?

In the last few years I have come to think about all the mental illnesses. They are real. They are medical. We can see them on brain scans and can test your enzymes to see which psychotropic drugs will metabolize and work best for your body. But it’s not like the difference between cancer and diabetes. These things are more discrete. When you are looking at multiple complex diagnoses, everything must be viewed through different lenses. It’s like needing trifocals for parenting. I am so grateful that help is on the way.
​2. Autism is a word that people have heard. I don’t have to explain it all the time. I feel honest saying it. We fit within a community now of autism families. And despite his various diagnoses, these seem to be our people. These are the ones who get it. The kids on the spectrum who also have ADHD get it a little more. Kids who are gifted and have one or both also really get it. I have yet to meet anyone with the same exact issues who is also gifted. Teachers and psychologists alike are a little fascinated by my Boo. He’s different among the different. He will learn a lot about other kids who are like him but not, and who knows? As much as he talks he might be a help to the kids with speech delays. We’ve already seen other kids help him lower his anxiety and increase his confidence. Whether it is caused by the mood disorder that gives him big, huge feelings or just luck, he is very emotional and compassionate, at least when he can read a situation and understands what someone else is feeling. 
​3. It gives us a parenting framework. I remember since my son was first diagnosed with anything and my mother used to ask what the doctors he was seeing recommended for discipline or how to address the behaviors. They didn’t know. They couldn’t even tell for sure what was wrong. People are sometimes surprised, like how could you miss autism for seven years? I know what autism looks like better than most. I’ve picked it out in other people’s children as early as 6 months old. But it was never clear for him. Now that we know I can focus our reading on the right things. Some people think parenting should be instinctive, that humans don’t need scientific research to understand how to parent their child. Good luck with that if you have a kiddo on the spectrum.

A friend of mine has the first and most inspiring special needs family I have ever met. Her husband basically taught himself how to do ABA before it was as well researched and state provided. Their son has classic autism, and I just couldn’t figure out how the Dad did it. I watched YouTube videos of on discrete trial training, and it seems to be an approach for littler kids. But I kept reading and I started learning more about how token economies (*cough, bribery, cough*) work as a powerful behavior modification tool. So the first week the goal was a point a day for “not arguing.” He earned zero points that week. So back to the drawing board I went and realized that’s still much too big of a goal. What are the things that make up an argument with kids? Not accepting no, being disrespectful, whining, not following instructions… wow, there’s a lot there isn’t there? So we broke it down. We said you get a point when you say “okay” to a “no” from a grown-up. We read a book by Julia Cook called “I Just Don’t Like the Sound of No,” and decided to try to become members of the Say Yes to No Club. I realize that to parents of neurotypical children this might feel a little authoritarian mind control-ish, but trust me when I say it’s what he needs. I didn’t start my journey as a parent thinking that I wanted to raise a “compliant” child. Quite the opposite I expected to raise a child to question authority. But for my square peg that doesn’t seem to be the way to go right now. This week he earned 12 points and got to see the fireworks as his chosen reward. This made me feel brilliant, until the next time I didn’t know what to make of things, so for like 5 minutes.

We’ve learned to give him lists, and the instructions must be broken down to the smallest parts. So “clean your room” is an impossible thing to ask. He literally can’t do it. Learning that it’s not that he WON’T do it has increased my compassion for the problem. If you give him a list, and it says pick up everything on the floor, this too is too much. At this point it’s hard not to be frustrated because no matter how much I read about asynchrony the idea that one can do algebra but not basic tasks is hard to understand in practice. So those tasks have to be broken down even further: first pick up all the Legos, then the crayons, then the action figures, etc. We’ve learned that like it or not, he needs hand-holding and direction; the room might actually get cleaned if someone sits there with him. And when it’s really bad it’s so overwhelming he needs help problem-solving, so we might agree that he gets a 5 minute break for every 25 minutes of work. After we get through to him while he is melting down about something we can fix if he would only hear me out.

We’ve learned that asking him to do something quickly, never mind quickly and carefully, breaks his brain. It causes such a great deal of anxiety he shuts down and can’t do anything. So we try to stop with the “hurry ups,” even if that’s all I want in the world, for him to move faster. We’ve learned that although he is unusually flexible for a kid with his challenges, he still struggles with transitions a great deal but that this is a difficulty he is not aware of so it’s our job to prepare him even if he seems fine. A time warning before he needs to change activities, especially for “non-preferred activities” has helped immensely.

Of course, we slip, on all of these techniques, fail, and then feel crappy. Like all the time. But I’m getting better at it. There is less arguing. There is still so much to learn, but at least now I am looking in the right places. I know what he needs, and it may take a few more months of paperwork and waiting, but now we can get him the right help. His teachers will understand him better. The rest of the world will understand him a little better. Perhaps they will even find the genius in those square peg edges and have just a little more compassion and take a little more pleasure in the things that make him such an awesome kid. I may not be interested in “celebrating autism,” but I am into taking pride in his achievements great and small and acknowledging that autism might not be awesome, but he is. 


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2 Comments

Carrie - July 7th, 2015 at 8:49 AM
I love this quote: "Parents don't have to attend every argument their children invite them to." It's helped me walk away from many potential blow outs with James.
Boo is blessed to have a mom like you who sees the amazing kid he is and fights to get him the help and services he needs.
- July 7th, 2015 at 11:22 AM
Ha! One of my very favorite quotes as well! And I'm lucky he shows me how awesome he is every day. :-)
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