behavior is communication – again … still

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{image is a photo of Brooke at ~ age 5 sitting in front of her Dora Memory cards, arranged in pairs and in a perfect line on the glass table in front of her.}

This afternoon, I will be talking to a group of Early Intervention providers. I was thinking about what I wanted them to know this morning while I was in the shower, simultaneously shampooing my hair and reciting my lines in a Godpsell script with Brooke, who was sitting on the floor arranging her figurines in a perfect row. What? I thought that was what everyone’s morning was like. Anyway, my main theme when speaking to those working with our children, especially the littles, is always the same – starting and ending with a fundamental respect for their client – the child.

I talk about why it’s so damned important never to prize indistinguishability over self-actualization, why the deficit model of teaching is not only ineffective but harmful, how important it is to always, always, (yeah, ALWAYS) presume competence in terms of every human being’s ability to understand, learn and, communicate in their own way, and the importance of relying on the only true “expert” testimony there is in the field of autism – that of autistic people (<– see blog roll over on the right (or below on mobile devices) for a list of links to the experts under “Vital Perspective from Autistic Adults.)

I also talk a lot about why an early interventionist’s perception of the child’s challenges is so important – because they will help to shape the parent’s perspective, which, in turn, will shape the child’s. If they view autism as both a disability AND an identity, both as a source of challenge AND strength, so will the parents and ultimately, so will the child. If they say that there are things the child “will never do,” those parents, terrifyingly, might just believe that there’s no point in trying. But if they focus on what the child CAN do and build on it, so will the parents and, again, ultimately, so will the child.

But as I watched Brooke, I had another thought.

While we are working hard to ensure that ABA (Applied Behavioral Analysis) is no longer the default method of teaching our kids, the reality is that many, if not most, of the EI providers who work with autistic toddlers come at their interventions from a behavioral perspective. That’s what insurance covers.

Brooke tweaked a rogue figurine back into line and I smiled, then winced, remembering a time when we were told (and believed) how important it was to discourage her from lining things up. I was never sure why it was “harmful” other than that it was “characteristically autistic.” It took me longer than I’d care to admit to realize that the latter wasn’t even remotely the former. Lines, for my girl, are comfort. They are a way to create order in a world that feels chaotic, and, far too often, out of her control. If there’s something harmful in that, I can’t imagine what it is. 

But we were told that lining things up wasn’t “playing with them.” That it demonstrated a “lack of functional play skills.” And when she was three and we knew nothing but what we were told, we thought that must be right. Now, of course, I’d say, “Um, hmm. Maybe not to you, Buster Brown, but my kid is pretty damn happy. The point of play, the “function” of play, as it were, is to … ? I’m going with … be happy.”

Anyway, I’ve gone off the rails here a bit; let’s try to bring the train back around, shall we?

As I watched my girl happily play – and find calm in a time of transition and unknown — in her way, I thought about behavior. And all of the stuff that we used to believe about it when Brooke was the age of these littles — that “bad” (or its only slightly less judgmental cousin “maladaptive”) behaviors needed to be extinguished. And then what we learned. That behavior – all behavior – is communication. And that, therefore, to extinguish behavior is to suffocate communication.

That’s not to say that there aren’t absolutely, positively times that our kids need access to alternative methods to the ones that they are currently using to communicate. Self harm, injury to others – these are those times. But extinguishing a behavior, no matter how injurious it may be to oneself or others, without providing an alternative method of communicating whatever it was meant to communicate, is never, ever okay. Especially with those who have trouble conveying their needs, it’s the opposite of what we are trying to help them accomplish.

Behavior is communication.

Cutting off behavior without providing access to an alternative cuts off communication.

What I will say this afternoon was starting to take shape.

“Mama!” Brooke said. “What did Mary Magdalene say to Matthew when he sneezed the third time?” Lost in thought, I’d missed my cue.

“She said, ‘Bless you three times, Matthew,’” I said.

“Did you do it in her voice?” she asked. She’d caught me. I’d forgotten to do the Mae West / Mary Magdalene voice. She needed the routine. She needed the structure and the comfort of sameness in a world that is changing around her.

I started over, smiling at my girl, making lines of figurines and telling me, in her way, exactly what she needed.

20 thoughts on “behavior is communication – again … still

  1. This is a great post and will be a great talk this afternoon. Brooke looks awesome in that picture (proud Grammy just had to say that).

    Love you,
    Mom

  2. Yeah, so my son’s perseveration of movies over and over has gotten him an invitation in our high schools “theater night” where he will be performing (perfectly and word for word, of course) his monologue of the narrator at the beginning of Beauty and the Beast. This “obsession” has given him the vehicle to participate is something with his peers at the high school, to feel confident and proud. So I feel super vindicated that instead of trying to get rid of these obsessions we went the route of using them as a means to connect. 🙂 yay us.

  3. As the mother of two autistic boys and a provider of aba services I have to disagree to some extent with what you wrote about functional play. I agree that lining toys up is often completely functional for our kiddos. Like you said, it provides for them a means to “find their calm”. As a practitioner I rarely outright discourage it; however, I do encourage other forms of play. Because while it is often functional it’s not always the MOST functional use of their time. If the kiddo is relatively calm to begin with, the lining (or any other stim) isn’t serving him or her as well as working toward the acquisition of a new skill would.
    Also, it’s important that little ones do gain functional play skills in the more traditional sense because the true function of play is far, FAR more than just providing an avenue to fun. It is the primary means through which children learn. They learn social skills, such as staying in their own space, sharing, taking turns, imitation, etc. They watch their peers (or other play partners) and expand language use, practice both fine and gross motor movements, and learn new skills (sweeping the floor with a toy broom, for instance). They use their imagination and take identity-formation risks in a safe environment. Play is far more than just fun… So I do teach the little ones I work to “drive” the cars instead of *just* lining them up because of the doors to social connection with peers–and, therefore, further learning–that it can open for them. I saw Temple Grandin speak once and she said something along the lines of “if I’d been allowed to stim 24/7 I would have never learned to do anything else because I was quite content just stimming.” So I work hard to find the balance between respecting the intrinsic value of the stim and helping the little one acquire other skills (some of which can even meet that same need in a more socially appropriate manner–because as much as it stinks for some of our kiddos spinning down the aisles of a crowded grocery store to help process the sensory tidal wave washing over them just won’t work when they’re 30…). Bottom line, though, while I agree with the majority of what you wrote, I also think that it’s important not to let the pendulum swing so far that we lose sight of the ultimate goal of helping these little people attain the skills necessary to reach their potential.

    • I hear you, and, just as you did, I agree … to an extent. 🙂

      I didn’t mean to imply that we didn’t also spend time teaching Brooke skills that would allow her to engage in play that other kids would recognize as such. We did, and, since it couldn’t be more obvious that she craves and thrives on social interaction, we still do. I realize that I didn’t say that in the post, so I completely understand why you would — and respect that you did –raise that. We are in a agreement on the value of those skills .. in addition to self-calming and happy-making skills.

      But this is where I get a little stuck …

      “Because while it is often functional it’s not always the MOST functional use of their time. If the kiddo is relatively calm to begin with, the lining (or any other stim) isn’t serving him or her as well as working toward the acquisition of a new skill would.”

      These are kids. If we insist that they use every waking moment using their time in “the most functional” way possible, when do they get to .. be? To be comfortable, to be happy, to be themselves, to be kids? To relax? To bring their baseline of stress and effort down to allow them the capacity to engage in all the work that they are constantly being asked to do – in every facet of their lives? When do they get a break? Hell, I’m an adult, and I can tell you that I absolutely, positively, do not (and don’t want to) spend all of my time doing something even remotely functional.

      Speaking about my own daughter, if she’s “relatively calm to begin with,” there’s a good chance that it’s because she knows that she’s able to enjoy what she’s doing without a performance demand hanging over her head. No more than taking away supports in school because she’s progressing with them in place do I think it logical to say that because she’s calm, she doesn’t need to engage in activities that help keep her calm.

      ABA, as I’ve said in the past, remains one of the many tools in Brooke’s toolbox. Like every other methodology that we use, however, we take and adapt only the parts of it that are relevant for her and respectful of her – most saliently, the breaking down of material into smaller, more manageable bites that build on one another. That said, I don’t toss the proverbial baby out with the bathwater and damn everything about ABA, but I, as I hope everyone would be, am a very critical consumer as it relates to my daughter and how she uses her extremely precious time and emotional energy.

      As for spinning down the aisles of the grocery store, well, I’m far above 30 and I happily spin and twirl and skip with my girl wherever we go, the grocery store included. My fervent hope is that, if we all keep working on encouraging a world that truly embraces difference, by the time Brooke is 30, no one will bat an eye lash when we do.

      • Well, when it comes to therapy, I completely agree with Tiffany. The child may only be getting a few hours out of the day to receive ABA therapy, and its not a good use of time to let a child line up toys and disregard others around them. When they are home, parents typically aren’t giving intensive ABA therapy, hence, a break.

      • I would add, developmental therapies like DIR and RDI offered our girl a much more enjoyable and effective road to expanding her play and building social connections and communication than 3 years of ABA could do. I also won’t say there aren’t helpful pieces to ABA that we still use, but it had some serious limitations.

    • Tiffany – check out some of the adult bloggers on this site. It’s wonderful stuff for the parent of kids on the spectrum (me included).

      You’d be surprised because some of them do still “spin down the grocery aisle” because it does calm them. I think we neurotypicals see blocks to potential too much in what autistic people do, and not enough in how we NON-autistic people react to it.

      It is so freaking hard to walk that line of “socially appropriate” and what works for our neurotypical world, and being fine with “different, but not a big issue”. As a kid who never really fit in, it’s hard to know your kid just isn’t going to, but giving them the internal tools to be OK with that, the comfort of themselves, is as if not more important than some skills we neurotypicals deem “important”. (totally with you on the learning, but comfort in being who they are is major). 🙂

    • Tiffany, I’m an autistic adult. I’ll give you two situations. Both are in work or work-like environments:

      Situation 1: I am conversing with my boss in her office about a job I’ve just done well. My hands are “quiet” and I’m making eye contact.

      Situation 2: My superior is giving me instructions about how to do a task differently than I had just done it. I have a fidget in my hands and, instead of looking directly at the person talking to me, I’m facing the opposite direction, actually watching her by watching her reflection in a TV screen.

      In which situation am I “appropriate?” How about “functional?”

      The reality is that situation 1 was, objectively, much lower-stress, right? I was getting a compliment. In that situation, I was also dealing with fluorescent lights, dozens of barking dogs, noxious odors, and anxiety so intense that I would spend the rest of the shift gagging in the bathroom over the toilet. I was working in an animal shelter, and I felt the pressure to hide my autism. Clearly, I would get little work done that night… hardly functional. Situation 2 should have been higher stress, since I was receiving correction. It happened today. I’m helping at an autism nonprofit, where my skills are put to use in the best way possible. I am free to stim, yell at the computer when the program acts up, and run outside when the sunshine looks especially beautiful. My superior isn’t really my superior… she is the center’s owner but always does me the honor of saying that I work “with” her and not “for” her. She doesn’t see me in spite of my autism… she knows I have gifts precisely because of it, and she uses those gifts in ways that benefit the whole center and its community. I’m a hard worker, not unknown to say, “Enough chatting, this is work time!” Today, I designed an email campaign newsletter, updated the website, wrote a piece to be published by an organization that is supporting us, and agreed to speak with the owner at a school event. She even said that she can’t wait until she can bring me on as her partner, true partners in running the nonprofit.

      The key to my first success at maintaining employment (without making myself so anxious as to be sick and unable to speak for long spans of time) is that I am allowed to be myself and cope in the ways that work best for me.

      Does the world think I’m weird? You bet. It’s a good thing, too, because I see “normal” everyday… I see white lies, people-pleasing, criticizing, money-hungry “normal,” and that’s not what I ever want to be. I’d rather be thought totally wacky than be thought to be like everyone else. I’ll deal with changing the world’s perception of the behavior of people like me… don’t worry; I’m up to the task.

  4. Truth be told, it is because I read it here that I trusted it to be okay to allow, actually embrace Isabella’s “stimmy” needs and ignore those who say “they stopped that behavior!”

    WE are the experts because the experts, our children, grandchildren, nieces, nephews, etc. taught us. Thank you, Jess.

  5. Personally as a parent of an autistic child and being autistic myself, I’m glad that ABA is not widely used here in the UK, it would so upset me to be expected to do that to my child. Sure they need to learn how to respect other peoples space and to accept that they can’t always expect the world to revolve around their needs. But being autistic is not just a condition, it is who we are, and when someone tells us that our need for symmetry and order is wrong, then they are telling us that we are wrong.

    It is very hard for people to grasp just how important those stims and behaviours are to those of us on the spectrum. It’s not just something pleasurable, it’s something essential to our wellbeing. If we cannot fulfil the need to line things up or perform a certain ritual then it feels like we will explode with anxiety, an anxiety so overpowering it can emotionally tear you apart very quickly. To take those release valves away from us is like punishing us for being stressed out, and saying we should live with the anxiety instead of avoiding it. You would not do that to someone suffering from ptsd so why do it to someone with Autism?

    If my son behaves in a way that could be harmful to himself or other children I will explain to him that this is not acceptable behaviour. But if he is just harmlessly expressing himself through behaviour, there is no way I’m going to interfere with that – because I would not want anyone telling me how I should express myself or reduce my own stress levels.

  6. Oh and I agree that childhood should be just as much about being a child, free to just enjoy life and have fun. As an adult I keep the ‘functional’ stuff down to a minimum, my life is there to be lived for the joy first, then being functional second. I only wish my aching hips would allow me to skip and twirl around the shopping centre 🙂

  7. My son Quentin use to line up everything from blocks (alphabetically of course), to color crayons (boxes and boxes of them) from light to dark, to all of his Thomas trains. And as he got older, he started scripting, reciting every tv show, movie and song he has ever heard. When he started school, he would always be the one singing holiday songs, and was so good that he would sing them on the announcement speaker, only because he couldn’t at that time sing in front of a lot of people. I have mentioned in other comments on this blog that we are at Seattle Children’s Hospital, now in our tenth month. Everybody knows Q and knows that he sings holiday songs. He has overcome his shyness and will sing for large groups and we have so much fun listening to him and and watching him growing as a young man. And this is how he communicates!

  8. I value your posts and your perspective and hearing from Brooke’s perspective. I believe it is important for professionals to believe in their clients and parents to believe in their children. Just yesterday, I found myself talking with a father who had reached his breaking point. “I can’t” he professed. “I’m exhausted. I have nothing left to give. Why can’t I give up on her?” My answer, “Giving up is not an option, not on your daughter. She needs you, but you need a break too, and that’s okay.” I told him that he can have high expectations of his daughter, but also offer the support she needs to get where she needs to go. We invited Sarah (name changed) in to the room. We spoke with her and asked why she is having a hard time in her classes, why she was sleeping or trying to leave the room. Through some careful questioning, she was able to tell us that the work is too hard and she’s feeling overwhelmed. We asked her what she thought we should try differently to help her succeed. The visit was only an hour and a half. But, by the end we were able to refill our cups, so that tomorrow we can keep helping Sarah help us help her. Behavior is communication. There is no purpose to suppression. If we continue to teach, share, and learn, then together we will surely grow.

  9. I keep hearing how “awful” ABA is. I must be seeing a different ABA being used with my two sons. They play, and learn at the same time, with their ABA therapists. Perhaps because our agency uses the “Denver model?” Perhaps because my kids goals are not about stimming, but other things like turn taking, conversation, understanding other kids emotions and their own?

  10. Yes, yes, yes. I agree with you and I wish for your message to get out to many more, loud and clear. I am an autistic adult who was undiagnosed until 35. Now that more children are being diagnosed today, I’m noticing the patterns of parents and teachers NOT presuming competence. A child doesn’t speak so parents are speaking in front of them as if they aren’t there – dismissing them as if they don’t hear, don’t live, don’t have feelings and opinions, and aren’t taking in every piece of data around. And when the child bangs their head, rather than looking at the action as communication (perhaps a severe ear infection as in most cases?) the parents/teachers seek to treat the behavior by medicating or aggressive “therapy”. It’s frustrating and heart-breaking to see. The more of us who share this (your) view with others, the more acceptance will be the dialogue in action. Thank you for sharing this message and cheers to your little one (who may just turn out to be an incredibly talented structural engineer with a passion for “lining things up”)!

  11. My autistic son was getting frustrated with the lack of challenges at his school and the repetativeness of busywork… he continued to get more agitated in the classroom over unexpected changes and no assistance. When his usual happy self turned into someone who someone who being loud and disobedient, the school’s response was to switch to an ABA method of rewarding him for the smallest thing, like eating snack or going to gym. He rebelled against this so hard, he was miserable and actually told us “they don’t know what they’re doing, they just come up with more plans that don’t work.”

    We’ve talked to his school several times and after struggling to get them to understand that his refusal is tied into their system of treats and doing the lowest amount of work possible (he’s gotten “rewards” for just reading all day. Where’s his free and appropriate education?) we’re finally moving toward getting tim to a private school that understands him. I’ve been a big cheerleader for mainstreaming, but the way they applied ABA to him as if he were a trained dog is humiliating to him, and us.

    Thank you so much for your post.

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