When you receive your child's autism diagnosis, it's normal to mourn the loss of the parenting experience you thought you would have. You won't share things with your child that you always dreamed about.
But maybe you will.
Last week, Tosh and I spent the day at Sea World, celebrating his friend's birthday. We had fun looking at dolphins, penguins, sea lions and manta rays. Our friends even treated us to a Dine with the Orcas experience!
As much as Tosh loves animals, the thing he enjoyed most at Sea World was riding rollercoasters.
Isn't it funny how when it comes to autism, motivation is everything? Tosh struggles with positional words (over, next to, inside) but when he's at a theme park settling into a rollercoaster car, he can follow every direction perfectly.
He raises his arms to allow the over-the-shoulder restraints to lower into place. He always remains seated and keeps his arms in the car. He can even wait in line when he needs to.
Sea World wasn't very busy so the...
When Tosh gets upset, he gets caught in what I call “the loop.”
For example, when he gets hurt, he needs me to tell him “it’s okay” over and over and over and over again. Long after he feels any pain, he still needs to relive the experience and be reassured that everything is okay.
I know when he’s in the loop when I have to repeat myself three times. Two times may not be the loop, it could be impaired receptive communication.
But three times? We’re screwed.
Now I know there’s a psychiatric term for that behavior: perseverating.
My description of preservation as “the loop” is actually pretty accurate. Tosh’s brain, and the brain of many people with autism, get stuck on a particularly phrase or activity long after the stimulus has passed.
Imagine driving and getting stuck in a roundabout. You're going around and around and around, unable to exit to the correct street or any street, for that...
This summer, I've been listening to business podcasts while I take my morning walks. This morning, I heard a great business concept that can be applied to autism parenting.
The concept was "learn and do" versus "do and learn."
The first idea, learn and do, is the traditional way people approach success. It requires training from someone who shows you exactly what to do. Then, once you've learned the strategy or task, you do it.
This business concept worked well back when the world moved at a slower pace. This was before our current era of relatively quick technology adoption, global economies, social media and market of one service.
Today's world requires a more nimble approach. One size does not fit all and even if it does, it doesn't last for long.
That's why the concept of do and learn is more effective. Yes, you begin with some idea of what you're doing. You might even receive some training before you begin.
But that's not the end of your...
Parenting a child with autism is hard.
I know we're not supposed to say that for a lot of reasons: we might attract angry social media trolls, we might manifest more difficulties, and nobody wants to hear somebody complaining about their troubles.
But it's true. This shit is hard.
I mean, parenting a neurotypical kid is hard. Parenting a special needs child is much harder. If you share some of your child's autism genetics, you may struggle with a combination of sensory issues, executive function skills, anxiety and auto immune disorders, which makes parenting much, much harder.
Figuring in the sky high divorce rate among special needs parents, there's a good chance you're doing this alone some or most or all of the time.
It can be overwhelming. Believe me, I know, because all of the above applies to me.
Thankfully, these days I'm in a much better place than I used to be. Life was much harder when Tosh was...
As the mom of a severely autistic, nonverbal kid, I worry about a lot of things.
Eloping isn’t one of them. Tosh isn’t a runner, and for that I am very thankful.
He's also very good at staying next to me and following directions. He always stops at the curb and looks to me before entering a street. He always puts one hand on the shopping cart without being reminded when we're in a busy supermarket parking lot. He never goes far without making sure I'm within his eyesight.
And because of that, we can do things other autism families can't, like go on vacation without constantly worrying about his safety.
Until last week.
We were on a mini-vacation by the beach and were checking out of our hotel. This year, he's become super helpful and is starting to carry his own weight. For example, he carries groceries into the house without being asked. He rinses off his plate and puts it into the sink after every meal without being asked. He picks up his own toys...
When your child is officially diagnosed with autism, you feel a lot of emotions.
You might feel relieved that you finally have a name for your child's lack of development.
You might even feel a bit vindicated that you were right and all those doctors and relatives who told you it wasn't autism were wrong.
But then the grief sets in.
There are many emotions that come with an autism diagnosis, but most of all, there is grief.
So much grief.
You refuse to accept that grief. You refuse to accept that your child will spend a lifetime suffering from a disorder that allegedly has no known cause.
Because of course autism has a cause. If it didn't, the rate wouldn't be increasing at an epidemic rate. This is more than bad luck, more than losing the genetic lotto.
This is fucking bullshit.
So you begin searching for a cure.
It's so alluring, that cure. Especially when your child has severe autism and suffers from chronic pain,...
Today we achieved a major milestone: Tosh watched a new movie all the way through, and only used his iPad once.
This has been a long time coming. We first took Tosh to the movies three years ago. At that time, he was five and if you have a moderate to severely autistic 5-year-old, you already know how that turned out. It didn't go well.
He kept running up and down our row and wanted to sit in the row in front of us. At one point, he crawled under the seats so he could get there.
This all happened during the previews. Mid-way through the animated short, we left. He just couldn't handle it.
But we didn't give up. I'm very passionate about the belief that everyone deserves to go out and experience the world. Whether it's going to the movies, out to eat at a restaurant or on vacation, kids and adults with autism are capable of far more than we realize.
They just need lots and lots and lots of practice.
It's a real conundrum: the only way to learn social skills is...
When your child has moderate to severe autism, it can be a struggle to feel like a normal family.
One of the easiest ways to overcome that struggle is to lean in to autism, and let it help create your own special family traditions.
We've been doing that for a few years, and this Father's Day, we hit it out of the park.
A couple of weeks ago, I told Tosh that Father's Day was coming up, and I wanted him to help me decide what we should get his dad for a present.
He thought about it for a few minutes and then proudly announced his decision using Proloquo2Go on his iPad: a tree.
"A tree?" I replied. "You want to give Dad a tree for his present?"
Yes, he confirmed. A tree.
Naturally, I had questions. A tree isn't a very practical gift, especially for an apartment dwelling dad. I asked Tosh if he could show me what kind of tree he had in mind. I turned it into a spelling lesson and used Google search to teach him how to spell tree.
Autism parenting pro tip: search engines are...
My son and I were eating breakfast out when I noticed the older couple in the next booth giving us the side eye.
“Oh God,” I thought to myself. “Here we go again.”
My son behaves well in restaurants for a kid with severe, nonverbal autism. He doesn’t scream or disrobe or run out of the booth like he used to.
But he does make autism noises. If you’re the parent of a nonverbal child, you know “the song of our people.”
It means he’s not as quiet as a neurotypical child, but he’s not loud enough to ruin a reasonable person’s meal, either.
Okay, yes, he does sometimes lay down in the booth at some point during the meal. And yes, he always has his iPad on. I mean, he uses it to communicate so of course he does.
But unless you know the full spectrum of autism behaviors, you wouldn’t know he’s very well behaved compared to his peers.
You wouldn’t know that if you were, say, the...
A controversial new mandatory vaccine law was passed by the California state senate recently, which means people are once again debating whether or not vaccines cause autism.
This blog post is not about that issue.
It's about an argument people make when they debate it.
It usually goes a little something like this:
Even if vaccines do cause autism, I'd rather take that risk than worry about my child catching the measles. After all, autism isn't fatal.
The way this argument trivializes autism is bad enough, as if it's merely a behavioral inconvenience, rather than the serious neurological disorder that it is.
But even worse, it's wrong.
Wrong. Wrong. Wrong.
Autism is absolutely fatal, and there is data to prove it.
According to an April 2017 study published in the American Journal of Public Health, and reported in Psychology Today, the average life expectancy in the United States for those with ASD is only 36 years old.
For the general population, it's 72.