4th Birthday Party

Here we are, another year. Ummmm. Let’s see. My son is four years old now.

Haha. I usually do a yearly update post about where we are right now. But now that my son is four years old, it seems a little impossible to write a neat little narrative about what’s up in our lives.

Today he had his birthday party, and the turn out was, well, pretty typical. If anything, the party flow was pretty enjoyable and seamless, especially considering the professionals were teens working for minimum wage. In so many instances, it is so obvious that my son is different, but I’m actually a little taken aback by how well he fits in, playing with his classmates at a party.

I’m pretty sure he’s pretty good at reading. Haha. It’s hard to tell—I don’t know if he’s fucking with me. Sometimes I could see where he could pick up some context clues and take a pretty good guess—sometimes he’s clearly reading a word, with no information available other than text. Then again, could he be reading small words like “red” and “purple” but memorizing words like “microeconomics”? You never know because he’s a tricky bastard.

There ARE times when I get a little freaked out by his behavior. Sometimes it really does seem like he is just in his own little world. He talks to his finger like an imaginary friend and, heh, I don’t know. It was cute, but it didn’t stop. And, then, I don’t know, his eyes will glaze over and he will sound like he’s whispering to someone, like he’s having a conversation with someone, and it’s really freaky. It SEEMS like he’s completely losing touch with reality. I SUPPOSE it could be as simple as a stim, a script, something I don’t recognize or understand, and so I just don’t get it. Freaky, tho.

I don’t know. Maybe I’m too complacent, but it’s hard to sweat the small stuff. Kid can’t put on his shoes without help. He only asks questions he already knows the answers to. We are just starting to make progress with verbal sequencing and telling a story. Sometimes I think he’s a little lonely, and ultra sensitive. (Shrug) But he orders his own food at restaurants. He’s a whiz on the computer.  He’s excitable, and has a passion for life. He’s really fricken hilarious, and has a smart mouth. He argues with me about who is better—Kesha or Britney. He’s friggen WRONG, by the way. It’s Britney, bitch. I don’t know what his problem with Kelly Clarkson is, he just don’t like her.

Ha. So, shit. I don’t know. Autism schmautism. Flippant, right? Temporary. Hyperbolic. Maybe. Things just seem pretty, er, pleasantly unremarkable right now. Hey, it happens sometimes. I’ll gladly take whatever Easy the universe wants to send my way.

On "Outgrowing Autism"

Haha, I just run my big ole mouth like I know something, or you should care for my opinion, or something.

But I find the “myth” of the “formerly autistic” to be pretty dang plausible.

So here’s the scoop: there were a couple news stories about the possibility of “outgrowing” autism. The studies that were cited may have been new, I’m not sure, but either way, they say about the same as any other study has suggested- that there is a significant minority of autistic children who grow up to be adults who don’t meet the criteria for autism.

Several influential bloggers reached out to counter the sensationalism, and I don’t disagree with that. The headlines suggest that a big ole chunk of people who are diagnosed just grow up to be normal by adulthood. People are picturing nonverbal school age children spontaneously catching up to their peers by the time they are leaving high school. Reality is probably more like, mildly affected children with average IQs who go through some sort of intensive treatment sometimes don’t seem very autistic later in life.

John Elder Robison suggests that this is pretty much entirely due to coping strategies and the ability to compensate with other skills and resources. He explains how he was definitely disabled as a child and now he really isn’t disabled as an adult. He explains that many, many autistic people reach independent functioning without any sort of accommodating support necessary. It’s a myth that all autistic people experience lifelong disability.

Then he goes on to point out just how well these “formerly autistic” individuals did in this study:

“I’ll offer another point of perspective.  All the same tools used for the kids in this study have been used on me. I’ve been tested repeatedly with the most recent round being last August.  In that ADOS screening, I was still above the ASD diagnostic threshold.  In the facial recognition tests, I was also well above threshold.  In the social function, I was above threshold.

The thirty-four kids in the study therefore tested less disabled than me, and I am not really disabled in daily life.  But my differences still show up on the tests.”

His conclusion? “Some of us do an excellent job of masking disability, especially in middle age.”

What???

No. I could be wrong, and all. Robison is way smarter and more successful than I. He knows more about autism. He’s actually autistic.

Still, as my son would say: “But, no!”

MANY, MANY, MANY, MANY autistic individuals gain enough coping strategies and life skills to be functional, successful, and independent. This isn’t news to anyone familiar with autism. Someone like John Elder Robison is exceptionally successful, and one of the reasons he is so influential is because he is so extraordinary. If you could guarantee that all the newly diagnosed children right now would turn into John Elder Robison, I think parents would be downright ecstatic.


Well. HE’S autistic! The adults in the study who didn’t meet the threshold were waaaaay less autistic than he was.

And I think that’s my problem with this counter argument to the sensational “It’s Possible to Outgrow Autism!” story. We are now arguing about apples and oranges, here. We are arguing about the clinical diagnosis of autism versus… gee, I dunno, being well rounded? Having a good head on your shoulders? We’re back to making the same old stereotypes? “More Autism = Less Ability to Function” “Less Autism = Wildly Successful”? Jeez. I’m not autistic. I haven’t accomplished ANYTHING as cool as Temple Grandin, or John Elder Robison, or John Hall. That’s not what we’re talking about, here. We’re talking about Autism, and its symptoms.

I’m not an expert in neurology by a long shot, but my limited understanding leads me to believe strongly in the power of neuroplasticity. I think the emerging research from child development studies suggest that our culture, lifestyle, and environment greatly affect our neurological development. It seems our attention spans and working memories are changing dramatically every generation, just because of changes in technology and everyday life.

Apply that to autism, and early intervention, and it seems possible to brain train some of the mildly affected children right out of their autism by adulthood.

I’m honestly disappointed in the dialogue. It seems pretty clear that Autism is just this word we use to describe a set of (mostly) behavioral symptoms. By definition, some people that “are autistic,” “aren’t” later in life. But even if you make the argument that behavior changes don’t necessarily mean actual neurological wiring changes… it’s pretty clear that sometimes, that’s exactly what they mean. The brain is pretty flexible like that. So, both by clinical definition and by actual neurological wiring, it’s possible to “recover” from autism, given certain circumstances.

And who cares?! Does this leave people vulnerable to false hopes about the future? Um, why would it. The study definitely shows that most autistic individuals remain autistic well into adulthood. Losing an autism diagnosis isn’t a guarantee for a carefree, successful life. Keeping a diagnosis for a lifetime doesn’t guarantee that your life will suck. Really. That’s how life works—there are no guarantees about the challenges you’ll face. I’m a parent, so I get that “no autism” sounds easier than “even a little tad bit of autism” but then let’s talk about that as opposed to this weird conversation about how autism is some intangible, identifying characteristic, independent of disability, behavior, and brain wiring. “Outgrowing Autism” is an oversimplification, but, uh, so is “Pffft, you can’t stop being autistic, that’s silly.” There’s more to it than that.

On "Wingin' It," Autism Stylie

Okay, so, I’m Autism Mom again, with a new strategy.

Uhh. I don’t know. Look. My super power is “winging it” okay? So, I don’t know how valuable this super power is in regards to trying to raise an autistic son. But I honestly don’t know if I can take any other approach at this time.

The experts all have their opinions, and I value these opinions, like, crazy. I do. The most helpful people in my son’s life are just amazing. But we’re sorta at a stand still right this very moment, because the two people whose opinions I trust the most sorta think my son is “Good enough” developmentally, so to speak, and since I disagree, I have to sort of blaze my own trail as far as my next move is concerned.

So, here’s where we all stand:

Expert 1- My son’s former BCBA, and director of the school he attended. She doesn’t see IEPs in our future at all, and sees his ability to look to his peers as role models, high social motivation, and fairly age appropriate development across the board as a good sign that he will be able to make it in the real world without any special support. She’s in tune to the fact that I’m a bit of a nervous, yet, permissive parent, and with her super assertive nature, I bet she thinks some straight laced parenting would be all he needs in life to flourish.

Expert 2- My son’s preschool teacher. Dude, she has a fancy degree, and she seems to be able to apply that degree. She knows he’s falling behind his peers socially, and knows that because of his restricted interests, it’s been a challenge to get him to practice many preschool level skills, such as drawing, dressing himself, and using utensils while eating. Still, she thinks practice is the key to success, and doesn’t seem too worried about him overall.

Me – I am skeptical of the “practice makes perfect” approach to social skills. I wasn’t autistic. My language wasn’t delayed at all. My parents had waaaay more money than I do and I was in tons of activities, and was exposed to a LOT more social opportunities than my son, and still, my life was a friggen nightmare, man. In fact, I suspect that children who make inappropriate social attempts without being corrected (because ppl avoid conflict- many kids will just start avoiding an awkward kid, rather than correct their awkwardness) runs the risk of practicing bad social skills over and over agin.

At the same time, he seems to foster good relationships outside his peer group, and it’s worthy of noting! I’m not talking about a weird lil professor who only hangs out with adults, I’m saying, he gets along well with his tween cousins, and he usually finds a friend a few years older (6 or 7) at any place there are children. That being said, it’s very likely that I’m just not that familiar with the complexities of preschool age play, you know? So, uh, either way… I’m not comfortable with leaving it up to “practice.”

Also, I see a problem emerging (or possibly re-emerging.) He seems to be having more vocal stims, and they are very frequent. I see some “attending” issues on the horizon, and I do not know how to deal with them just yet, but I have some approaches in my head, so, not to worry.

And for now, my immediate action plan is to go a little broader, and just bring a little more structure and productivity in our lives. I’m finding it easier to take a lot of Temple Grandin’s advice to heart, when at one point, I think I found her advice a little on the vague side. She wasn’t being vague; she was being “broad.” Heh. I’ll follow up in detail, but for now, my approach is just to stay a little busier, and help him focus his abundance of energy on hands on projects that can serve as good practice for developmental skills. I think this will make it easier for ME as a parent to make sure he stays engaged, as well, as to avoid him spinning and humming in all of his free time.

I know, it’s not much of a plan. But I’m over planning too far in ahead at this point. This aint no game of chess! Okay, at least, I hope it isn’t. I suck so bad at chess.

How to Raise Children to Become Successful Adults. Or Something.

Perspective, man. Seeing where other people are coming from. Realizing that there is more than one way to do most things.

I think, like a LOT of parents, I look back on all the mistakes my parents made and I wanna learn from em. At the same time, in the back of my head, I know how this cliche plays out, generally. People overcompensate for their parent’s mistakes, find out their children don’t react exactly the same way they did to shit, anyway, and overlook some really important parts of the whole “raising children” process.

So, it’s not always easy to just “do what’s right.”

I’m on this whole new “self help skills” thing and high on my priority list right now is my child’s ability to be independent. I was totally crippled by infantilizing parents, and yet, it’s hard to immediately correct their mistakes in my own parenting style when I STILL have no idea what is expected from a young child, behavior wise. A few basic manners came about through THERAPY and it’s unbelievable how EASY and USEFUL simple etiquette can be, even for a three year old.

Then, you know, I get to the other side of it. Um. And that other side is making a big fucking deal about nothing.

I’m reading a book on how to help children with autism acquire self help skills. I was only a few pages in when I got sidetracked by my skepticism regarding the importance of some of these skills. Okay, if you explain it to me, I can see how chronic bed wetting may be a problem. If you start talking about real developmental milestones, and the physical capabilities of a child, then I can follow the logic. In the grand scheme of things, I think bedwetting even quite late into childhood isn’t that big o’ deal, but I feel comfortable with the idea of night training a capable child.

Start talking to me about the importance of coordinating outfits, however, and I start feeling pretty judgey and contemptuous.

Seriously. A mere handful of pages into this book on self help skills, the author is talking about the IMPORTANCE of “coordinating clothing and choosing clothing consistent with age and community norms.” And I am not trying to just pull this completely out of context- be aware that this is a descriptor of advanced skills, I guess, and maybe there is some implied context about how unawareness of social norms can be debilitating, even if these norms are totally arbitrary. Within context, I still find this a little fucked up.

I say this as someone who was really clueless about clothes growing up and in hindsight, that shit really negatively impacted my life. It was just one more thing to alienate me from my conformist classmates.

And you wanna know something?? I STILL don’t really know any better. I dated a guy in my 20s who would say “Noo…” in this condescending way if he saw me reach for two mismatched socks. I seriously wore mismatched shoes until my kid started preschool, and then I didn’t wanna alienate HIM, ha. I work in RETAIL and we sell apparel. People ask me what goes with shit. Here’s a sales tip- everything goes with everything! There. If the people asking you know any better… well, shit. Why are they asking you? Who is the foolish one, here? Haha.

It’s not a functional skill. Sorry. It’s this, like, supplemental, very acquired skill that has jack shit to do with development. Don’t wear a garbage bag or a ratty t-shirt to a job interview or a date. Okay? IF you’re trying to sell yourself, dress to impress. But really, you shouldn’t be constantly trying to sell yourself. I didn’t learn the importance of interview appropriate attire until I was in my 20s. Teach that. I shouldn’t be reading about trendy clothing in a book I got for help with my autistic three year old.

Is my opinion based on some sort of anti-intellectual, “I struggled with that and I turned out fine” sort of mentality?? Hard to say. It’s this paradox we all experience, but parents have to FACE it all the time:

All the most important lessons in life are learned the hard way.

We are shaped by the pain we endure in life. We learn from our mistakes. I have forgotten how hard it is to be a child and my stomach turns at the thought of my child having to go through all that. So I strive to prepare him for life, so that he has it easier. But what easy lessons from my childhood am I taking for granted? What guarantee can I give that my guidance will be any better than previous generations? I think my parents reeled from harsh, volatile, totalitarian parents and didn’t realize they had to replace beatings with some other form of discipline. I think I take for granted how my parents strove to remain calm and collected around me, and I often wear my emotion on my sleeve in front of a sensitive preschooler.

I want to learn from my parents mistakes. They thought they were raising a “free spirit” and there were all these unforeseen consequences. At the same time, I’m kinda, like, this free spirit. Ha.

Often times I second guess my parenting decisions, and the mental pressure can be a little overwhelming. We don’t wanna screw up our kids with our mistakes, but reality is, “it’s gonna happen.” It’s only a question of “how” and “to what degree” n stuff.

(Shrug)What's a parent to do?

Some Sort of Rude Awakening?

Feeling a lot more like Autism Mom these days.

I had a parent meeting with my son’s teacher. She seems to be a nice enough woman, and I was impressed with her insight. Disheartened to realize her insight far surpassed mine, and that I was a bit unaware of how my son struggles and that I haven’t been communicating with the staff very effectively. Yeah, maybe I blindsided these very competent professionals by sticking an autistic child in their class without any, you know, hints or cheats on how to deal with him. I don’t know though. I feel like… perhaps… I needed to rule out the idea that, armed with some foundational skills, he could just follow a normal developmental trajectory from here on out, or something, I don’t know. I don’t know.

Ehhh. I’m having a hard time fully processing our first parent/teacher conference. The day before a staff member at his school had made a remark about my son being in special ed. Since my son is NOT in special ed and I haven’t even disclosed any sort of diagnosis with them, I was alarmed. I was suddenly very afraid that my son was very behind all his peers and nobody cared because this was just a little supplement to his special ed. So I wasn’t in a very clear frame of mind when this meeting took place, and I braced myself for gloom and doom when his teacher turned the subject to “areas of focus.”

So now I am not quite sure how much emotion and misinterpreted connotation might be wrapped up in what I actually heard her say. Nothing was very surprising on a factual level—it doesn’t surprise me that sometimes he is unresponsive to questions, especially regarding abstract subject matter. I could tell from the birthday party he attended recently that his peers talk a lot more and use more complex sentence structure. I also know that he is nice and incredibly friendly, and sociable, sooo… you know. He will learn from his peers and start to catch up??

The teacher gave me some insight that made me think that maybe it won’t be that simple. Perhaps I’ve been assuming that because he can talk, and because he has tenacity for overcoming communication barriers, he must be doing all right, socially. The teacher even agreed that he gets along with everyone just fine and all the children are friendly with him. But he isn’t forming very meaningful relationships with these kids because he cannot sustain interactions with them. He is quick to escape any situation that is uncomfortable. I’ve made some sort of presumptuous connection here that led to a wrong conclusion. I have a bright, socially motivated little boy who has enough language and self care skills to get along just fine in regular preschool. That does not mean that he will easily keep pace socially with his peers. And I KNEW that, but I guess I thought at the preschool level, it wouldn’t be a problem. And now I’m like, “Aw, shit, do we need to stick him back into therapy??”

That’s something to think about, but it’s also clear that he has benefited from his time so far at this school. I still see a child making steady progress, and on top of that, he’s practicing a bunch of school related skills with real live typical peers. So, you know, in the long run, when he’s entering kindergarten a year and a half from now, with 2 years of intensive therapy and an additional 2 years of educational and social experience… then how will he fare, compared to other students? What kind of troubles will he have, then?

I suppose the answer is, “Well, who the hell knows. Fucking duh.”

Shit.

Well. I just have some things to think about. I have to figure out just exactly how much time and money and emotion I need to invest in things additional to his hours in this preschool. I have to figure out what exactly to do with these investments. Do I contact the school district to set up an assessment? Maybe I call his developmental pediatrician? Is an assessment even top priority now??

And honestly, should my focus be on my son’s issues right now? How much of the problem may just be on the parental end? I mean, I really need to get my shit together. I ruled at figuring out my kid’s diagnosis. I RULED at quickly figuring out a plan of action and getting him into therapy. I ruled at keeping a good head. I don’t know that I rule at being a parent with clear and consistent boundaries and expectations. I don’t know that I rule at planning several steps ahead, and being fully prepared when new problems emerge. Without the structure of therapy appointments, it’s like I’m slipping into this laissez faire style parenting, and it’s easy to feel positive about it because I’m a free spirit and my son’s a free spirit… but he’s a free spirit without any framework to work with, you know? He has a hard time regulating his emotions. Typical behavior doesn’t always come naturally to him. He needs some guidance, or life’s gonna kick his ass. Oh, man.

All right. I’ll sleep on that, for now.