Buzz Phrase 1: Joint Attention (Getting to The Point)
“Joint attention” could be THE buzz phrase of all autism buzz phrases. But it’s a little hard to define and a lot hard to capture on video— mostly because Nick doesn’t really do it. A lot harder to prove a negative, right? So I included a video of him working on joint attention and pointing with one of his wonderful therapists, as well as a rare image of Nick pointing.
I used to joke that 90% of Nick’s zillions of hours of evaluation and therapy were about pointing, and the other 10% were about… everything else. And it wasn’t really a joke. The importance of pointing really cannot be overstated. You hear a lot about the significance of eye contact in autism, but for some reason, you almost never hear about that all-important Point. But both eye contact and pointing are markers for the ability to engage in something called “joint attention.”
Put simply, joint attention is engagement. It’s that feeling you get when the person you’re talking to is really *with you* and not spacing out or texting someone on the phone…or in any other way “somewhere else”. This seems to be the working definition most autism therapists currently use.
But I believe the original definition was a bit narrower and more technical; “joint attention” used to refer to the situation where two people are literally attending to the same thing— either through verbal or nonverbal communication. For instance, if I (verbally) say to you, “Look at that airplane” and in response, you look up, see the airplane and tell me it’s white, we have just shared joint attention: we jointly attended to the airplane. Similarly, if I (nonverbally) point to the airplane— or even just gaze at the airplane— and you see me do this, follow my point or gaze to the sky, and look at the airplane as well, then we have shared joint attention: even though we aren’t talking about it, we are both attending to the airplane. And the fact that you only attended to the airplane because you saw me attending to it means that we are doing it *jointly*. I think this definition is a bit dated, but you’ll still sometimes hear people use “joint attention” in this way. Personally, I prefer this definition. Like most things that are dated, it’s just better.
Nick and kids like him spend *years* working— and I mean working HARD— on joint attention. A very typical schedule involves 30-40 hours a week of (pricey) therapy, most of which is dedicated to improving eye contact, engagement, and, of course, The Point. And despite all of this grueling work, I can count on one hand the number of times Nick has pointed to something in his entire life. One of those times was this beautiful point to a bubble when we went to the magical, Nick-friendly Gazillion Bubble Show in NYC.
A Formal Introduction…and a Nefarious Plan
Now that I’ve spent two posts pouring my heart out to you with deeply personal information about my family, perhaps it’s time that we are formally introduced. My name is Amanda Spagnoletti, I’m a 43-year-old stay-at-home mom of 3 awesome kids, and, as my husband jokes, I’m a “recovering lawyer.” Truth is, I don’t have much from which to recover; I spent a mere 11 months practicing law—and that was probably 10 months too many for me! At lawyering, I truly suck. At parenting, I fare pretty well. And at frantically obsessing about all things autism, I excel.
Our youngest child, Nick, was born in May of 2016 and diagnosed with Autism Spectrum Disorder (ASD) on July 4, 2018. Since that day, I have been on a mission to learn as much as possible about autism in hopes of helping Nick. And far more important than the reading I’ve done is the life I’ve lived for the past 4 years—the severe autism life. Needless to say, I’ve acquired a lot of autism-specific knowledge, and I didn’t really know what to do with it…
So last April I turned my personal Facebook page into an autism blog. In honor of Autism Awareness Month, I thought I’d raise a little awareness of my own experience with autism and show my Facebook friends and family what Nick’s autism looks like. The “blog” was never intended to go beyond my own friends and family, and it was always intended to be temporary. But people liked it, and I’m not going to lie—*I* liked it. It felt really good to have an outlet for all this random autism knowledge I’ve accumulated over the last few years. And it felt *really* good to be able to bring Nick out of the shadows and into the light. The videos I posted of him were, for many of my friends and even some of my family, the first introduction to Nick and to the world of severe autism.
So what’s a girl with a Facebook account and a lot of cute videos of her autistic son to do? Start a *real* autism blog, of course! I’m starting with the original posts from last April and then we’ll just take it from there. For better or worse, I’ve still got a lot to say.
My original goal last April was simply to teach people some autism jargon, so the first several posts are just me picking a “buzz phrase” of the day and then explaining it—in easy to understand laymen’s terms— and attaching an accompanying video that shows Nick engaging in that buzz phrase (where possible and appropriate). This part of the blog is really meant to be a user-friendly guide of sorts for people outside the severe autism world who want to learn more about it. It’s Severe Autism 101: The CliffsNotes Version.
After the initial educational posts, this blog will sort of morph into more of a platform for discussion of some of the pressing and controversial topics in the autism world today—of which there are unfortunately many. This is where it will (hopefully) start to become more interesting for people actually *in* the severe autism world. I’ll still throw in some videos because, hey, my kid’s adorable. But they’ll be purely gratuitous—cuteness for cuteness’ sake.
…Which brings me to my nefarious plan: I’m going to wax political on you. And I’m hoping that by the time I do it, you’ll already be so in love with Nick—and so sympathetic to the plight of people with severe autism everywhere—that you’ll have no choice but to agree with what I have to say. ‘Cause believe me, there’s a LOT to say, and Nick can’t say it. There. I’ve told you the worst of it. Don’t say you haven’t been warned.
Ok, now you know who I am and what I’m doing here. I hope you’ll read on and get to know the sweet little Nicholas Spagnoletti, his crazy, sometimes desperate mama, and how she learned to love without language.
Goodbye, Yellow Brick Road
Today is Nick’s 5th birthday. Those in the world of developmental disabilities understand the significance of a 5th birthday, but those outside of it usually do not. So I’ll try to explain.
When your child is first diagnosed with autism, you embark on a wild adventure. You feel a bit like Dorothy and her friends as they seek out the all-powerful Oz in the hopes that he will bestow on them whatever it is they’re lacking (a brain, a heart, “the nerve,” home). Like Dorothy’s motley crew, we autism parents are all seeking different things. Some seek a relief from crippling anxiety for their children; others seek an end to self-injurious behavior; still others are hoping to get their children to eat something other than just peanut butter sandwiches.
What Paul and I have been seeking for Nick is his voice. We are just longing to hear what that little guy has to say, to know what’s inside his head—even if it’s just “I could really go for an egg roll right now.” We’re certainly not stuck on literal speech; we’d be delighted with sign language or a keyboard or any sort of device that might help him communicate with us. We just want to know what’s inside that mind of his! But now that we’ve closed out his fifth year, the odds of this happening are extremely low. Toto’s just pulled back the curtain to reveal our reality.
All early birthdays are hard for parents of kids with developmental delays, but the 5th birthday is a real doozy. It’s The Big One. In the world of autism (and all developmental delays), you hear endless talk about the importance of ages 0-5 in terms of treatment and prognosis. The talk goes something like this: “Omg, you MUST do as much therapy as HUMANLY POSSIBLE during ages 0-5. It is CRITICALLY IMPORTANT that you do EVERYTHING in your power to help your child during this CRUCIAL time in his/her development.” Ok, so this might not be *quite* how the message is presented to you, but it’s honestly not too far off. And it is absolutely what it feels like. So you spend the first few years running yourself ragged with doctor’s appointments and therapy; a typical ASD schedule calls for 30-40 hours a week of therapy. For a preschooler.
And the trouble is the message about the importance of “early intervention” (therapy and treatment between 0 and 5) isn’t wrong. Despite a barrage of anecdotal evidence to the contrary, the cold, hard statistical truth is that the overwhelming majority of kids who aren’t talking—or at least understanding—by 5 will never go on to become conversational.
Given the tremendous pressure put on ages 0-5, it’s no wonder that parents freak the eff out about the 5th birthday. During the first five years, you hold onto hope that you can fix this, that you will someday fully recover the child you lost to autism. You plow through all the hours and hours of therapy, the doctor’s appointments, the psychiatric evaluations, the IEP meetings and legal proceedings, the autism books, the google searches, the cold calls to complete strangers who have raised kids “like yours” to get a little comfort and guidance. But deep down, there’s still a part of you that’s hoping against hope that this is just a big misunderstanding, that someday you will just click your heels together three times and wake up safe in bed back in Kansas—with a kid who talks.
When your child turns 5, you have to let that go. We know that our kids don’t “fall off a cliff” at 5, but we also know the odds. Kids can and do make progress after age 5; in fact, I’m told by people who’ve been in the autism world much longer than I have that almost all kids with autism make at least some progress. The question isn’t *whether* your child will progress, but *how much* he’ll progress. Even kids who lack receptive language at 5 can definitely make some serious strides in the years to come. But they’re extremely unlikely to become truly conversational. When it comes to conversation, where your child is at 5 is a good indicator of where he’s headed.
I once met a wonderful mom of a severely autistic, nonverbal child, whom we will just call “Charlie” for privacy purposes. She had a beautiful perspective on her son’s plight; she said to me, “Charlie’s life is going to be different from the lives of my other kids. But his life is going to be good.” At the time, this perspective really helped me, so I latched onto it with all my might. I called it “acceptance.” I decided that, although I would continue Nick’s therapy and “fight the good fight” until my dying day, I would also stop trying to *change* him, to turn him into something he’s not. After all, he’s a happy kid: his life may be *different*… but it’s good.
For the most part, this is still how I govern my own emotions and expectations for Nick. I’ve managed to reach some level of acceptance that this is the little boy I’ve been given and that his life will be good. But there is still a nagging voice in there playing Devil’s Advocate. A voice that says “This is bullshit. His life may be good, but not good enough. He will never experience any of the joys of normal life—confiding in a friend, a first kiss, curling up with a good book, a trip to the movies…any of it.” There’s a part of me that still wants to go *home* to the world I knew before autism, the world where I could dream of dancing at my son’s wedding or watching him walk across the stage at his high school graduation. After all, there’s no place like home, right?
But we are staying in Oz. We’ve grown roots here anyway; I’ve met the most wonderful friends—my very own Scarecrow, Tin Man, and Lion (and then some!). I’ve learned so damn much about autism, about human nature and about myself. I can’t even imagine my life without autism in it anymore. If Nick were to wake up tomorrow morning and say, “Good morning, Mommy! How are you today?” I think I’d be more confused than anything else. Our lives are in technicolor now, and there’s no going back.
So it looks like we’re stuck in Oz. But we’ve gotta get off the Yellow Brick Road. No more wishing for a magical wizard who will solve all our problems. No more pipe dreams. It’s time for reachable goals and realistic hope—hope that’s tempered with an understanding of what’s possible. Someday Nick may be able to describe the concrete world around him. He may be able to say that the sky is blue or tell us his tummy hurts. These are the types of conversations that are possible. And if these conversations ever *do* happen, we’ll celebrate them like we’re somewhere over the rainbow!
Happy Birthday, my sweet boy!
Sixes and Sevens
Yesterday I got a text from a friend asking if I had any suggestions for gift ideas for my son, Nick, whose birthday is today. “No pressure,” the text read—she meant, of course, that there was no hurry to respond. But the words “no pressure” struck a nerve, and I couldn’t help a bit of laugh-crying.
Nick has no idea that today is his sixth birthday. After dinner, our family will light candles and stick them into a Carvel cake, we’ll sing Nick the “Happy Birthday” song, and we’ll even give him a present or two to unwrap. But he won’t understand any of it; he doesn’t understand that he’s turning a new age or have any concept of what age—or time—is. In fact, it’s unlikely that he will *ever* understand the concepts of “age,” “time,” or “birthday.”
Nick is autistic—and Nick’s brand of autism, unlike some you may have encountered, is not a “superpower.” It’s not a “gift from God” and it’s not a “beautiful song” to which the rest of us just don’t know the melody. It’s a crippling, life-altering disability that prevents Nick from speaking or *understanding most spoken or written language*. He does understand a few things—concrete nouns, mostly. And a few action verbs, like “run” and “jump.” But that’s where his level of comprehension ends. In the bad old days of the 80s, we would have called what Nick has the “R” word. Now we call it severe intellectual disability (ID), coupled with severe or profound autism.
But today is Nick’s birthday and this sweet, beautiful child deserves to be celebrated. We don’t celebrate Nick in the typical ways—“typical” things are generally wasted on this very atypical kid. So today, I’m celebrating my mysterious marvel of a little man by starting a blog in his honor.
A blog was the best gift I could think of for Nick because what Nick needs more than anything is to be better *understood*. He needs people to understand his severe disability so that they can be more inclusive, more accommodating of him and his strange and unusual ways when he is out and about in the world. He needs people to look the other way when he unexpectedly pulls down his pants to pee in a bush in the playground. He needs people to occasionally let him touch their bikes or spin the wheels of their scooters when he finds these items lying around in the park. He needs people to let him “cry it out” when he’s upset about not getting his way—and to understand that his “crying it out” will be *loud* because he’s a big, 50 pound kid, with a set of big, 50-pound-kid lungs to match.
There’s so much that Nick needs if we’re to have any hope of continuing to get him “out in the community.” And lord knows, I want him out in the community! It will benefit Nick *and* the people who meet him (I promise it really will!). But in order to get him out there, we’re gonna need just a twinge more understanding about severe autism and what it looks like. Because it’s very different from what most people understand “autism” to be.
So here we are. I’m starting this blog to shine a spotlight on severe autism (as many others have done and I hope will continue to do). I’ll write the proper intro soon, but for today, I just wanted to say a quick word about turning six. Last year, on Nick’s 5th birthday, I wrote something about acceptance. I droned on about how, although I’d never give up on my child, I had learned to accept him for who he was. I said that I knew his autism was here to stay. I acknowledged that statistically speaking, any progress he made after age 5 was likely to be minimal. I’ve always found it dangerous to have too much hope.
But the truth is I do have hope—and unfortunately, a lot of that hope is riding on this year. I’ve spoken with so many parents of kids with severe autism who have said that their kids’ real progress—whatever that looked like for them—happened between the ages of 6 and 7. Or at least *started* between the ages of 6 and 7. I’ve heard this story so many times, I’ve lost count. There are kids who spoke their first word at 6, or who understood their first “Wh” question at 6.5. There are kids who got out of diapers or finally slept through the night just around 7. But there are also kids who didn’t do these things. Ever. There are people who still can’t answer a “Wh” question (i.e., “What’s your name?” or “Where’s the ball?”) as adults, and plenty of people with severe autism never toilet train or sleep through the night.
And nobody knows what accounts for the difference. We know that “early intervention” (starting therapies and services as young as possible) helps a lot, but all the early intervention in the world still won’t get some kids to progress. So much of the “autism journey” is just a waiting game—at least at the beginning. Will Nick be one of those kids who turns a corner at 6 or 7? Will he start piecing together sentences or be able to answer—and understand—questions like, “Where do you live?” Maybe. Or maybe not. I wish I could say I didn’t care. I wish I could say that I’ve achieved complete acceptance and am 100% at peace with having a child who can’t communicate. I wish I could say that I’m not watching Nick’s every waking moment (and some sleeping moments) like a deranged hawk for any glimmer of change or hint of progress. But yeah, no pressure.