They were talking about the new Muppet on NPR this afternoon. When Zoo Keeper heard that the Muppet is autistic, he said, “Like us!”

Yes, like us. Sort of.

I first heard about the autistic Muppet from Sparky, who sent me a direct link to the Sesame Street autism website. I was thrilled. An autistic Muppet hanging out on Sesame Street? How cool is that? Not only will Sesame Street be bringing autism awareness and acceptance directly into millions of homes, they’ll be showing about it rather than telling.

I went to check out the site. I’m not crazy about the theme song, but the videos for parents are great. BamBam has moved away from Sesame Street, but I couldn’t wait to pull him back in to check Julia, the new Muppet, out.

Then a friend sent me this People article about the new Muppet.

Frankly, I was crushed. I couldn’t believe  that the autistic girl is only a digital character. The article says that’s because “Families with autistic children tend to gravitate toward digital content, which is why we created Julia digitally.” Whether that’s true or not, this content shouldn’t be targeted toward families with autistic children. Don’t get me wrong: it will be great for autistic children and their families to see, Zoo Keeper’s certainly excited about it, but those families already know about autism. They live it. This content needs to be pervasive.

I don’t believe the general public will go out of its way to watch this digital content any more than they will seek out information about autism until it affects their lives in a personal way.

What Sesame Street really needs to help society move closer to autism acceptance is a physical autistic muppet to interact with Abby and Elmo on the actual show. Every day. Make her part of the group. Include her in outings and show how she might react to different situations. Don’t make it about autism. Make autism a part of the show.

For that matter, include a non-verbal autistic adult among the other adult actors on the show. Let everyone see that autistic people are just people who, though they may need accommodations to participate fully, are part of our society. Because autistic kids aren’t on the playground for one short, isolated segment of time and then gone any more than those same autistic kids disappear when they grow up. Available services and support disappear, but we’re still here.

That’s what I think, anyway. #SeeAmazing

I had lofty goals of writing a treatise on the state of special education in America this week, but then I remembered it was spring break. I think the only person in this house who handles change in routine remotely well is Sparky. He’s also the one who’s routine doesn’t really change this week.

In anticipation of having no time to myself this week, I signed both boys up for farm camp. It’s only three hours in the afternoon, so there’s plenty of time left for free play. The theme is barnyard animals and they were both really excited about it.

Until they got home on Monday. Well, Zoo Keeper is still excited about it, but BamBam refused to go back on Tuesday. When we picked Zoo Keeper up that day, he took BamBam and me to a clearing where two streams meet. He had discovered it last summer when he attended a similar camp. BamBam thought it was hella cool, but was mad that I wouldn’t let him step into the stream like his brother because he was wearing Crocs. With socks, because that’s how we roll in Seattle.

BamBam agreed to go back to camp on Wednesday because he wanted to wear boots back to the stream afterward. I probably should have told him that we could have gone back to the stream even if he didn’t go to camp, but I was concerned about what he would do with that information.

As we walked toward the camp building, he said, “I’m wearing my Batman boots to camp so I can go jump in the stream, but I’m not going to learn anything about animals because I’m allergic.”

“You’re allergic to learning about the animals or allergic to the animals themselves?”

“Um, I don’t know. I don’t actually know what allergic means.”

I explained what allergic meant and that you can’t be allergic to learning about something, then dropped them off at camp. We went to the clearing and BamBam was in it all of two minutes before the running water did it’s trick and we had to go find the bathroom. Except the bathrooms are closed for the winter, so BamBam had his first port-a-potty experience. I held the door open and coached BamBam on what to do while Zoo Keeper complained about the smell. BamBam was worried at first because there was “stuff” already in the toilet. I told him that was because you don’t flush a port-a-potty, to which he replied, “I don’t have to flush? Cool!” and did his business.

It’s now Thursday afternoon. BamBam is home from camp again. After he finished yelling at the Angry Birds Go app on his iPad (“Hey! No Fair! That’s cheating!” repeated at full volume several times – his volume goes to 11), he moved from the living room to the chair next to my desk in my office treating me to a stream of consciousness monologue about how many minutes are passing. They’re going really slow. Part of that may be because he’s counting them out of order.

My mother’s response to hearing this was, “Not sure why, but I seem to have a picture of you, at his age, in my head.”

Have I mentioned that I hate spring break?

Illustration of six hands holding up signs that say Nay!

I’ve decided to describe projects I run late on with a hearty, “Snailed it!” It’ll sweep the country. You’ll see.

Anyway, SNAILED IT!

I posted this on the Quirky Boys Facebook page last week. It’s about the pain caused when someone dismisses your experiences or feelings as invalid. It’s quite a powerful, insightful piece.

This week, I wrote a response to a comment on my last post. I want to make sure to point out that I don’t see this comment as a dismissal. When someone shares their diagnosis with you and your response is to say, “No way,” or, “I don’t see that,” or to list all the ways that person is not whatever he or she just claimed to be, that’s a dismissal. But Karen’s comment, at least to me, is not.

She’s talking about labels in general and she’s not denying my experiences. That’s an important distinction to me. She’s talking about acceptance, just in a different way than I was. But before I go on, here’s the text of her comment:

I’ve been thinking a lot recently about labels. More in terms of sexuality, since I know a teen who is trying to figure him/herself out – bi or gay? transgender or not? etc. Which doesn’t apply to you obviously, but the need to be able to label who you are does seem to. It’s a very human impulse to sort things into categories, to label and identify and classify. But I’m finding more and more, that labeling is limiting. Almost all of our abilities, desires, expressions of self exist on a continuum not in a binary. And by labeling we limit ourselves to that one spot on the continuum instead of a more fluid range. It’s comforting to be able to say “this is who I am” “this is why I am the way I am” but it’s not really that accurate. I really wish we did less labeling and more accepting. Less categorizing and allow for more diverse expression of self.

I don’t know if that is any help at all; it very well may be the opposite from helpful. Knowing your own quirks of behavior and your own needs for how you learn and function is really helpful for getting along in the world, but trying to shoehorn yourself into a label which may not fit isn’t.

From over here where I’m sitting, you are very self-aware and quite talented at expressing yourself. You’re a caring mother, you’re fun and funny. You can come sit at my lunch table any day.

Here’s my response:

It is a help. Thoughtful responses, even those I disagree with, maybe especially those, help me rethink and reframe. They help me figure out if I said what I thought I did and, if so, if that’s really what I think. They help flesh out ideas and new perspectives on things.

That said, I don’t totally disagree with you. I think some labels are limiting for some people. And no label should define who a person is. I think labels are a lot like families; stifling for some, a touchstone for others, somewhere in-between for most.

I think what you are saying to me is that autism seems to be a label I’m trying to squeeze myself into and that process is hurting and limiting me. I can see how it would look that way. But I don’t see autism as a limiting label so much as a reality check and a jumping off point. To me, it feels like freedom.

It feels like the tether that allows me to explore space without floating away.

It feels like a way of building a strong base, a solid foundation to grow on. I’ve built lots of little towers all around. The more I learn about autism, the more I see that they’re all connected. They always have been, but I didn’t see it, so now I’m trying to fill in the holes and tie the towers together so that I have a solid foundation. That way I can build higher.

It feels like solid ground beneath my feet.

Illustration of a big hand holding an eraser in the process of erasing a frightened man’s legs.

And it feels like the neuropsych is telling me to step off; that I can’t stand there. Or, more accurately given her report, that I can stand there if it makes me feel better, but that doesn’t make it my patch of dirt.

It feels like I’ve been dismissed.

Now, I’ve been dismissed before. A lot, actually: my feelings, my ideas, my right to breathe air. But never in something I felt so sure about as my autism diagnosis. There have been lots of things, mostly educational or training programs, where I thought I should have been dismissed and wasn’t. The people who were supposed to know, the experts, told me I should continue beyond the programs. I almost never did.

Instead, I chose new programs or took jobs below my educational level and supposed skill set. That’s called being under-employed and it’s a real thing in the autism community.

I think the crux of my chronic under-employment is that I am unwilling to be the expert on anything unless I’m 100% sure I understand everything about it. Science doesn’t really deal in absolutes…there’s always more to learn. You have no idea how much it broke my brain when I found out that text books were just books and what’s written in them isn’t always true or may not be the whole story.

Now I have trust issues, man.

Another factor is that higher level jobs often include answering questions posed by clients or bosses that you don’t always anticipate. At least I don’t. I’m not so good off the cuff. It takes me time to formulate a response to questions I’m not expecting. Or ones I expect, but are asked in an unfamiliar way. My pause and subsequent fumbling answer make me sound incompetent, make me feel incompetent, so my confidence plummets even further. So, I don’t take jobs that put me in that position.

Furthermore, in scientific fields there’s always a new study coming out. I’m a slow reader, but even if I could speed read, I don’t think I’d ever be satisfied that I knew enough. I can’t fake confidence. I either know something or I don’t and, if I don’t, I won’t talk about it without qualifying everything I say. Which is why I defer to experts. I believe that they know more than I do. They seem like they do, so they obviously do. Except, as it turns out, it’s like the whole textbook thing.

I don’t have a problem being wrong in general. I get really embarrassed about it, but I don’t have a problem admitting I’m wrong. Except when I am absolutely convinced that I’m right. On those few things, it drives me crazy if someone, anyone, doesn’t believe me. Because I know I’m right, I’ll think I just haven’t explained it well enough and will keep at it indefinitely, convinced that you, or whoever, will eventually see the light if I can just say it in the exact right way that you can understand. I’ve learned to stop talking, though sometimes that takes a looooooong time, but the conversation goes right on in my head. I’m still trying to convince someone I was right about something I said 30 years ago. He probably doesn’t remember he ever met me.

Which brings me back around to the neuropsychologist. She’s an expert who is dismissing my conclusion that I am autistic. A conclusion I’m sure of.

The label is not what is limiting me here; it’s my need to be validated by an expert. The people who know me best are convinced I’m autistic and ready for me to move on from beating my head against the expert wall.

It comes down to her word or mine. Am I going to take her word as law because she’s the expert or am I going to step up and take my place at the table? Can I acknowledge that the jury’s still out on what exactly constitutes autism, especially in females? If I can, then there is certainly room at that table for my voice.

I advocate fiercely for my boys. It’s time I did the same for myself.

cats alienate a dog
Illustration by ayutaka
Picture of five animals on a tightrope. Four are cats, grouped together holding hands. The fifth is a dog, standing apart with a tear in her eye.

I’ve never felt I belonged anywhere. As I said in What am I Trying to Prove?, I’m not a native of anywhere. There have been places and situations where it may have seemed like I did fit in, but there has always been at least one person to point out to me, whether by intention or not, that I really didn’t belong. As a cheerleader. As a choir member. As a student. As an employee. As a friend. As a family member.

It’s not always in a bad way. I’ve been the only employee in a department to hold things together while the boss is gone. Even that, though, means you don’t fit in with the others in the department.

I was working on a post about how miserable I am when the temperature goes above 75°F, but have decided to table it until next week. Don’t get me wrong, I still find it nigh impossible to function in the heat, I’ve just found a topic that’s worth the Herculean effort this sweltering (to me – don’t judge) this Thursday afternoon.

I wrote last week about the pending re-evaluations for the boys. We won’t have the written reports for a month or so, but Sparky and I met with the neuropsychologist yesterday and were blown away. In addition to autism, he had a new diagnosis to add for each boy. Zoo Keeper has nonverbal learning disorder and BamBam has ADHD. I made a joke with that one about it being no wonder I’m so tired all the time, but rather than taking it as I intended, he said, “Well, yeah.” Then he told us that in a room of 100 five-year-olds, BamBam would be one of four who were unable to control their impulses. The other 96 would all have the ability to focus and their parents wouldn’t have to follow them around reminding them not to touch this or that and then taking it away from them when they touched it anyway.

I got a new shirt a few weeks ago and I love it. I washed it today and, when I was hanging it up, I was trying to figure out when I can wear it again.

It reminds me of this shirt I had in college. They look nothing alike – the only thing they have in common is that they’re both soft and both shirts. The new one is off-white with blue stripes and kind of sweatshirt-ish, the other was knit and off-white with green flowers all over it. I guess they have the off-white part in common, but that’s not anything I particularly liked about either, so it doesn’t count. Here are pictures of both:

Circa 1990

Yes, I know, mom jeans. It was the late nineties. Sue me. I pulled it out of the frame and the fortune is stuck tight, so you get that, too.

See? No real similarities. So, what made me think of the shirt from college today? It was the fact that I was wondering when I could wear my new shirt again.

I used to wear the green flowers shirt when I would go out with my friends. A lot, I guess, because my roommates started staging clothing-interventions. They would offer me other clothes to wear, telling me how great this and that would look on me. It felt kind of weird to me, but I decided maybe that’s what girls do. Though none of them ever wanted to wear any of my clothes and I never witnessed any of them exchanging clothes with each other. Eventually I realized that the clothing exchanges usually happened when I would put on the green flowered shirt, so I stopped trying to wear it.

Thing is, I didn’t know why they didn’t want me to wear my favorite shirt and they didn’t know why I didn’t know that I should REALLY have stopped wearing it months before. Or maybe I should never have bought it in the first place. I really still don’t understand. I know I was somehow wrong, but I don’t know why.

I know that something about the way I look, the way I dress myself and do my hair, is wrong, but I don’t know what or how to fix it. I said to a friend a while back that I have no style. She told me that’s ridiculous – everybody has a style. I guess mine is comfort, but I still don’t think that can legitimately be called a style. I think of it more like I have comfort instead of style.

I like t-shirts and jeans because I like how they feel. I don’t like shoes because they generally hurt my feet. I don’t like to wear white because it makes me self-conscious. I like my current haircut because I don’t spend any time at all styling it. I like t-shirts with sayings on them that amuses me, though I’m pretty sure they make me look sad and weird to some people. When it came to work or going out, when I did either of those things, my philosophy has always been that I’m going to feel awkward no matter what I wear, so I might as well be wearing comfortable shoes.

I’ve drifted off point, though. My point was about communication and subtlety. As with most autistics, subtlety doesn’t work on me. Knowing it exists has only made me anxious and distrustful over the years. I know I can’t read the subtle social signs that tell allistic (non-autistic) people when they should leave a social situation, so I either over-analyze every gesture or comment made or I just assume I’ve already overstayed my welcome.

I can’t get the subtle signals of social interaction. Even after 45 years of trying. So, I’ve decided to (try to) stop trying. It would have been much easier for everyone if my college roommates had just told me that I should stop wearing my favorite shirt and why. Yes, my feelings probably would have been hurt, but I wouldn’t still be wondering about it. And after I got over the hurt, even through the hurt, I would have appreciated the honest input.

So, if you witness me doing something that’s socially inappropriate or ill-advised, please just tell me. I can pretty much guarantee I don’t know what I’m doing is wrong. Be gentle, but direct because I won’t get a subtle hint. For my part, I’ll try to accept it with an open heart and mind; I’ll deal with my own hurt feelings and promise I won’t hold it against you. I’d rather know.