The Short Bus Diaries » Confessions About Life With an Autistic Son

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The Lies We Tell Every Day

You might not like me very much after this post, but that’s something I’ll have to live with. After all, the main point of this post is just that–the truth is not very popular.

I can only speak for my husband and myself here when I say that we lie every single day. We lie because we understand that you don’t really want to hear about it. It’s kind of like when people ask you “How are you?” as a form of saying hello, and you debate whether or not you are supposed to answer the question truthfully and with supporting details, or whether you should just say “fine”, because that is simply what’s expected in this relatively meaningless social exchange.

The fact is that I only post perhaps 1/25th (by my “scientific” estimates) of the reality of my life on Facebook, which is the only social media–besides the occasional blog post–I have time to participate in. Sometimes it’s because I’m just too damned busy (case in point: I had to wait five days before I had a moment to shower about half an hour ago), but mostly it’s because I’m shielding you from the discomfort of hearing about what my life is actually about.

You mean well. You care about the general welfare of my family. If you work closely with my son, you probably care very specifically about the welfare of him and the rest of his family. But when it comes down to the dirty (quite literally) details, most of you don’t want to know. You don’t know what to do with the information. You are at a loss for what advice you wonder whether I’m asking you to give. You can’t relate, although you might try to offer up a gem about the time when Junior peed in his pants that one time at the museum, in a totally understandable attempt to get into the trenches with me. But mostly, you just don’t want to hear about it because it bums you out.

I know this. I know that if I were to publicly document every event that stresses me out all day long, every battle we fight and often lose, every desperate cry we silently make to the universe when the shit really hits the fan at our house, you might quickly hit “like” out of general human sympathy, but that you would really prefer to move onto more pleasant Facebook posts.

Because everyone loves a feel good story of human triumph. Ask any blogger or Facebook page owner which kind of posts earn them the most “likes”, and it’s rarely the totally dirty truth ones. I exempt other special needs families from this little experiment in social network attention; we have our own private Facebook groups where we actually feel comfortable really letting it out, and I am grateful to the IT gods for creating these magical social networking tools that provide families like mine with little safe circles of truth.

In addition, when a blog or Facebook page starts to attract actual attention, the self-censorship really starts to increase. What starts out as an exercise in journaling, in that strange semi-anonymous-yet-totally-public-therapeutic way that most personal blogs are launched, eventually shifts into a carefully planned magazine-like article that tries to walk the fine line between truth and consideration for which total strangers on the Internet you might offend. Fortunately, the HuffPo and all the other major blog syndicators have never come knocking at my door, so I am not officially required to make my posts more appealing to the masses, although I have found myself unofficially editing my own words into paragraphs of inoffensive vanilla, nonetheless.

Here’s another uncomfortable truth: my husband and I have come to the conclusion that various business deals and friendships have withered or come to a dead end–not because we can’t hold up our end of the business/friendship deal (because you have no idea how hard we work to keep up appearances), but because again, we bum people out. In our public interactions, you better believe that we are extremely careful and rarely share much of the real truth about special needs parenting. But you might get a brief glimpse behind the wall when we are running late or have extra dark bags beneath our eyes, and you decide that it’s simply too hard to maintain the relationship because you assume that we have other priorities that distract us from our work or from social pleasantries. I don’t know why you disappear. But you do. And that is why we lie.

Even my own extended family is guilty of the “autism-pivot”. A few nights ago, the direction of the conversation somehow led to autism (oh yeah–I think it was a snarky comment about the Handwriting Without Tears program, which we are trying, and why would handwriting actually cause children to cry?!). Somehow, I found myself describing at a very high level the ridiculous online war* going on between autistic self-advocates and autism parents, because I have realized that most people have no idea that this sort of thing goes on. But then, three sentences in, I quickly noticed everyone’s eyes glaze over at the dinner table. Two sentences later from my niece and nephew and we were off on a completely different topic.

They didn’t want to know. It’s not pleasant to contemplate. So I moved on, right along with them. Except that I had to go home an hour later to the subject matter that they didn’t want to hear about.

There’s a lot of pressure here on Capitol Hill, where my family lives, to project normalcy and success–not success in terms of status symbols and perfectly made-up faces (DC is far too conservative and self-conscious for that kind of thing). Instead, the pressure comes in the form of projecting an image of having one’s shit together. You are well informed about local issues and participate in the various neighborhood meetings. You shop locally for every single product you can think of. You feed your children a meal every night that was either delivered by a local business or constructed from a locally-sourced farm share. You help plan the ever-looming school silent auction and you always have a local referral to make about the absolutely best local business ever on the neighborhood list-serve. You know what’s up. You’ve tried it all. You have a system for everything. You show up on time. You participate. You contribute to your community and you make sure that everyone knows how much you contribute to your community. Forget BMWs and big houses: in DC your public image can best be measured by how well organized your shit is and by what a loyal and well informed local citizen you are.

Well here is where I wave the white flag. We pay our bills and our house is fairly clean. Our children are well looked after, loved, and educated. But I buy everything I can on Amazon because I don’t have a minute to spend on participating in the delights of my local community (unless it is carefully staged and I’ve got child-care covered for 45 minutes). If I could get away with ordering in every night (pizza, Chinese food, and anything non-organic I can get my hands on, I will. And our cabinets are teeming with junk food. There’s some of the truth that you could probably discern by simply standing in the doorway of my house.

But the more specific truth is that we have to unlock our cabinets every single time we want to give our children some of that junk food. Because if we don’t, my son will tear open that bag of chips and stuff it down his throat until he is choking.

And my floors are clean because I wipe down them with healthy, bleach-soaked, completely non-organic wipes every day because my son pooped on them 7 days in a row last week, even though we begged and pleaded with him to use the toilet.

But you probably didn’t want to hear about that. You don’t know what to do with that information. Understandably, it makes you a little uncomfortable, and you’re not sure what to say next.

So that’s why we lie. That’s why we stay mostly silent. Because the truth might bum you out.

And while we are tired of losing friends and business deals, we are also tired of lying by omission.

However, this post isn’t some manifesto announcing the launch of some new daily truth-laying on Facebook–don’t worry. But it is a confession that the honest answer to your “how are you” question to us is probably longer and more detailed than you’d prefer to hear. I suspect it’s this way for most special needs families out there.

The truth is that my family lives on a little island. We occasionally take a boat to the harbor where everyone else seems to exist, but we do our shopping quickly and then we get the hell out before anyone asks us too many questions. We are afraid that one day we might actually tell you how we really are and that one day you might stop asking altogether.

 

* (Many loud and uncompromising self-advocates apparently feel that autism is just a “third way” to be in a neurodiverse, and that the efforts of parents to secure better respite and mental health services for special needs families, as well as find ways to mitigate the life and learning problems associated with autism, is akin to suggesting the euthanasia/murder of autistic people.)

Julie S - June 19, 2014 - 1:01 pm

Yep, yep, yep, and yep. I’d like to guarantee that things will get better, but no one can guarantee that. I went through many of the things you describe when my boyz were younger and the isolation is still a huge part of my life. Many of the other things (poop smearing, breaking into food cabinets, climbing the furniture and breaking it, screaming tantrums and punched through walls) have abated. At least partially. Feel free to contact me on Facebook, Google or regular e-mail (julies3334@gmail.com) if you ever want to vent about reality. Hugs and hoping tomorrow is a better day.

Suzanne - June 19, 2014 - 9:35 pm

Yes yes yes. Everything you say is true. It can be a world of isolation, half truths and trying to keep up appearances. Hugs to you. This is a very brave post.

D. - June 20, 2014 - 12:55 am

Thank you Shortbusdiary for the above post which validates something I’ve struggled to accept for years. The next time I see family members who inquire of my autistic child because I’m standing right in front of them instead of ever calling; I’m going to tell them, “I get it, Aunt/Uncle/Cousin So & So. We bum you out.”

Vicki - June 22, 2014 - 10:49 am

I love you guys no matter what the “truth” is!!! I know I may not understand all that your’e going through & live so far away to be able to be of much help to you but you can count on me if there is something I can help with & you are always in my thoughts & prayers! Thanks for writing these blogs so I can understand more about Max & what you guys are feeling & doing! I love your pictures too even when you say they’re not good pictures for various reasons! I give you guys sooo much credit for all that you have gone through & done! Keep up the awesome parenting job you are both doing with all the challenges you have had to face. XOXO

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