Why Talking About Autism Is So Complicated

One of my sons is autistic.

This isn’t news to many people I know personally, and it’s not hard to figure out who for those who follow me on instagram.

Sometimes people tell me he doesn’t “look” autistic.  Although it’s a slightly awkward comment, I see what they are saying. Autism doesn’t come with physical traits, although there are some tell-tale quirks. He doesn’t always look autistic… but sometimes he does. It depends on where we are, what we’re doing, and what kind of day he’s having.

There is a very real chance that my son will never “blend in” with the neurotypical world. As he gets older some traits are more pronounced and some less so.

I struggle with talking about autism for a few reasons. Here they are in no particular order.

I want my son to own his autism.  If my son chooses to identify as an Autistic, and wear his autism with a badge of pride, I want him to feel empowered to do so.  If my son wants to be viewed with a more person-first identity… a person who has autism, I want to be respectful of that.  As my son gets older, he will form his own opinions of self. And while I want him to be proud of who he is, I realize this can come in many forms. I want to give him the space to form his own identity without too heavy an influence from me.

I don’t want my son to think we are hiding his autism.  I just want him to feel in control of his personal information as much as a social media addicted millennial mother can allow.

At the same time, parenting is complicated. Add something like autism into the mix and it gets exponentially more complicated. Sometimes, I want to talk about autism with others to share the unique experience of loving and raising a person with autism.

In our house, autism is not a bad thing. I don’t hate autism… in fact, there are many amazing things about autism.  But this is pretty easy for me to say; I might have a very different perspective if my child were less verbal, or tended to run or wander away, if I worried about his safety when he had a meltdown, or the safety of others.  While we want to instill pride and confidence in our son, I can’t pretend that autism isn’t difficult and much different for many other families. I view autism through a fairly privileged lense; when I talk about autism, I have to be aware of that.

We want him to get assistance when he needs it, but we also don’t want him to feel like we want to “fix” him.

We want people to look at him for who he is, with or without the label depending on his preference, not ours.

So… until the day that my son can tell me his preferences, I’ll be pretty tight lipped on the more personal autism stuff.

But I made a little request on my personal Facebook page and I’ll make it here too:

Whatever your perspective on autism… whatever you think the cause, or what you think autism “looks like”, whether you have an idea of what autism is all about or not, seek some new information today.

Here are a few places to start:

Autistic Self Advocacy Network

Autism Network International

Blogs by Autistic Bloggers

Have a question about autism? “Ask an Autistic” YouTube vlogs  by Amethyst Schaber

A Different Kind of First Halloween.

I’m not really a holiday person.

It’s not that I have anything against holidays; I understand why people love them, but they just aren’t my thing.

Halloween in particular; I might be able to get into the idea of Thanksgiving or the Christmas spirit for a little bit, but Halloween… not so much.

And so every year I thank God for Target and pre-made Halloween costumes.  I usually avoid even thinking about Halloween costumes until the week before. This year it went something like this:

What do you want to be? We’ve got a puppy costume in the attic. Boom. You’re a puppy. Adorable. What do you want to be? Grim Reaper. Fine. Here’s a big black thing for half off 3 sizes too big. Wear that and a glow light so you don’t get hit by a car. What do you want to be? Oh, you’re a baby. Excellent, you’re going to be adorable no matter what.  There’s a dinosaur costume in the attic next to the puppy one. Perfect.

So far, Halloween was going swimmingly. Except for one thing.

Hudson decided he wanted to be Peashooter from Plants vs. Zombies.

Hudson who won’t even wear a hat, a shirt with buttons, or a color other than blue really, wanted to be Peashooter for Halloween. And this time, Target failed me.

Hudson who actually WENT as the color blue last year because we couldn’t get him in a costume and he dresses in head to toe blue anyway. I had given up on the idea of Hudson ever dressing up for Halloween and this year he wanted to dress up in a costume, with a giant mask.

And that’s how I found myself at the store buying a pack of balloons, green spray paint, a green tee shirt, a small pile of felt, and craft foam on the day before Halloween.

Halloween supplies

Hudson sat and watched me construct every piece of that costume.  He made sure nobody touched the paper mache as it was drying and checked on the pieces we left to dry in the backyard. He made sure we didn’t lose or misplace a single component of that costume, and he made absolutely 100% sure that the leaf on the back of his Peashooter head was exactly at the right angle.

Halloween Peashooter costume

My son, who won’t wear a hat, a helmet, or a hood for more than a minute, put on a giant paper mache Peashooter head. He loved it (he tried it on several times during the construction). After it was finished, he wore his costume in the yard (carefully reaching up to make sure his leaf was still attached to the back), wore it for pictures in the park and, of course, put it on for Halloween night.

Halloween Peashooter Costume DIY Homemade

After visiting 3 houses, he declared he was done trick or treating (not being a big fan of candy to begin with).

“Well, that was Halloween,” he said as he stripped off the costume inside. “Now it’s time for Thanksgiving.”

 

 

I Don’t Want to Know What You Think Causes Autism.

baby

Today this article popped up in my facebook feed.
I now suspect I will see it approximately 1,000 more times before the day is done, shared over and over and over again.

Read it if you want but I’ll sum it up for you: researchers found that of 100 kids with autism 16 of them had very high levels of folate at birth, and 15 had high levels of vitamin B12 at birth.

Folate often in the form of folic acid is recommended to pregnant mothers to prevent birth defects in the brain and spine.

The study shows a “plausible” link.

The study has not been peer reviewed.

And yet, if I google “folic acid autism link” I get a laundry list of articles from “news” sites citing this new study. Scroll down a little further and I get this one: Study links folic acid to lower autism risk.

To make matters worse Johns Hopkins Bloomberg School of Public Health shared this article (From Salon.com) on social media. If you’d really like to feel a special kind of rage read the comments (names removed but typos remain):

“autism is from vaccines injections………just like everyone who got bird flu or Swin flu were the only ones who GOT flu shots.”

“This is the kind of thing that happens when people use supplements to get their nutrition instead of healthful unprocessed foods. It isn’t just autism! Our food and water Supplies are tainted and damaging our bodies genetically.”

“Try looking at the levels of mercury our children are forced to eat, breathe, and drink. not to mention all of the other crap poisoning our environment.”

Stop. This is helping nobody, anywhere, so just stop.

Stop.

 

I am so tired of seeing this ridiculous bullshit.

Moms have guilt about everything but you haven’t MET a mom with guilt until you meet a parent who has a child with a disability the cause of which changes by the week.

The guilt is overwhelming.

You took too many vitamins, you vaccinated them on a doctor recommended schedule, you ate out of plastic tupperware, your lettuce wasn’t organic, you didn’t exercise enough, you took medication, you had postpartum depression, you didn’t breastfeed, you caught the flu from a co-worker… The list of things you probably did to screw up your child in one way or another is ENDLESS and when you’ve scheduled your 4th IEP meeting of the year wondering how you’re ever going to make it through the last month of school with your child let alone the next 12 YEARS the last thing you need to read is how your fucking multivitamin put you here.

*whew*

So autism moms (or pregnant moms), I say to you this:

 

You are not responsible for your child’s autism just like you are not responsible for which physical features your child gets from you or your partner.

You didn’t GIVE your child autism.

Your child is perfect. Your child is flawed. Just like we are perfect, and we are flawed.  It’s just that some of our flaws are easily seen and some of them aren’t.

 

Articles like these, a “plausible link” between something an autism aren’t helping the 1 in 68 children diagnosed with autism.  They are not helping families who are looking for guidance on how to support their child with autism. In fact, these click-bait-y articles do more harm than good.

Not only do they add insult to injury because parents who do so much to support their children also feel guilty for having caused it; but now if you’re pregnant do you take your folic acid or not? Prevent spina bifida and risk autism or prevent autism and risk spina bifida?

I’m not suggesting researchers don’t look into the cause of autism.

But until you have actual data that actually means something…

Don’t publish it…. and for God’s sake stop sharing it.