Monday, August 28, 2017

Get Out of My Face with Your "Quiet Hands"

In case you're out of the loop, we have two amazing kiddos staying with us through kinship care right now. That's right -- two bonus boys: Alpha, 8, and Bravo, 5 (almost 6).

Anyway, I had to take Bravo into the school today to meet with the school psychologist for some cognitive testing, as his IEP review is due before his birthday next month. I haven't worked with this psychologist before, and he seems like a nice enough guy, but I'm pretty sure he hates me now, because... you know... I can never seem to hold my firetrucking tongue when it comes to the treatment and education of the kiddos in my care.

So, I'm filling out the ABAS-3 (Adaptive Behavior Assessment System, Third Edition) while Mr. Psychologist gets out some puzzle pieces to begin testing. He's working in tandem with the SLP (Speech & Language Pathologist), and they're tag-teaming... Mr. Psychologist performs one part of his test, and then Ms. SLP performs one part of hers, and so on.

Everything is going fine -- I'm working on one side of the table on the ABAS, Mr. Psychologist, Bravo, and Ms. SLP are working on the other side. Mr. Psychologist has killed the fan in the room because the noise is distracting to me, and it's all good, until I hear it: Bravo, "quiet hands," please.

They were in the middle of testing, and Mr. Psychologist had asked me not to intervene with the testing process, so I lifted my head, gave the psych a look (he was too engrossed in the testing to notice), and went back to the ABAS.

When he finished the test portion, I butted in before Ms. SLP could begin her portion.

"Is this a stopping point?" I asked.

"Sort of," he said.

"May I speak, frankly?" I asked.

"Errrr... of course..." he ventured.

"Okay. So, we're a house full of neurodiversity and neurodivergence. We don't subscribe to ABA (Applied Behavior Analysis) therapy, its tactics, its goals, or its dictionary. We don't use phrases like, 'quiet hands.' We believe physical stimming is healthy and productive, and we don't force children to refrain from it, hide it, or minimize it."

There was a brief moment of uncomfortable silence, and Mr. Psychologist cleared his throat. "I understand that. That's great. I actually didn't even know that 'quiet hands' was an ABA thing."

Like, this guy wanted me to believe that he pursued an education in psychology -- presumably, with an emphasis on child development, at some point? -- to the point of receiving a degree, but had NEVER HEARD THE PHRASE "QUIET HANDS," IN THE CONTEXT OF ABA? I gave him the benefit of the doubt, in any event.

"Gentle redirection to return focus to the task at hand is fine," I said, "but I don't endorse attempts to restrict physical stims."

I let it go at that, but I wanted to scream, "BUT IT SERVES THE SAME PURPOSE, DOESN'T IT?! Does it even MATTER where you heard it, when what you want the child to do is stop his physical stimming?!""

Let me explain.

Applied Behavior Analysis (ABA) is compliance-based "therapy" popular with parents of autistic children, which includes goals such as "reducing inappropriate behavior," "increasing socially acceptable behaviors," and "increasing appropriate and effective communication." Its primary goal? To "fix" autistic children, "correcting" their behaviors, so they appear more neurotypical ("less autistic"), drawing less attention to themselves and their caregivers, so those caregivers and society at large can feel more comfortable around them.

If you're not grasping why ABA is harmful to autistics, try reading "Quiet Hands," by Julia Bascom.

Is that too artsy for you? Try this one from Amy Sequenzia, of the Autistic Women's Network.

Want to see what this compliance-based indoctrination looks like as it carries into adulthood? Read this post from Neurodivergent K.

Anyway, so I was trying to explain to Mr. Wright that the new school psychologist hates me, now, and I started telling him the story, and when I got to the part about hearing "quiet hands," he fell out of his chair, laughing.

Not because he thinks ABA is funny, but because he's been in IEP meetings with me, before.

He said, "Ohhhhhhhhhh, hell... QUIET HANDS? Did you lose your ever loving shit? Were you standing on your toes? Were you doing that? I can just see you, standing on your toes! You do that, you know!"

Well, no. I was sitting down, actually. Mostly, anyway. I may have been slightly out of my seat. Reaching across the table. With my hands ready to snap the guy's neck.

But mostly, I was sitting. Technically. Pretty much, anyway.

Mr. Wright asked what I hoped to gain from the exchange, and suggested that I simply wanted the guy to acknowledge that I am right about this issue. I thought about it, and replied, "No. I want people to earnestly consider the weight and implications of the ideals they hold dear, and I want them to come to the conclusion on their own that what they've learned or been taught may be wrong. I want them to realize they've got it all wrong, when it comes to the autistic community."

"In other words," he said, chuckling, "you want to be right?"

Well, yes. And, also, no.

See, I didn't come to enlightenment by nature. Nooooooo... I actually thought the "professionals" who were overseeing medical care for my children had all the knowledge, and I didn't really question their advice, until I hit a roadblock. ABA was one of many therapies suggested for Curlytop when she was diagnosed, and it wasn't available in our area for her. At first, I was devastated. Like, I didn't have the benefit of any type of interventions when I was growing up, so I wanted to make sure she had EVERYTHING that could possibly help her to succeed, so I went on a wild crusade to find an ABA provider, and did a ton of research to help find one.

It was that research that led to my enlightenment. I talked to actual autistics who had been subjected to ABA therapies as children, and learned that some of them had PTSD as a result of their experiences.

I thought about my own experiences, and my own struggles, and how difficult extended eye contact was -- and is -- for me, and how I always got poor grades in speech class because I couldn't look at my audience, and how I deal with that now (by simply saying to people, "Eye contact is really difficult for me. Please don't think I'm not listening to you if I'm not looking at you. I can actually listen better by NOT looking at you."), and how I'm actually existing pretty successfully in the world. I realized that if Curlytop doesn't get forced to initiate eye contact she doesn't feel comfortable with, it's going to be okay. She will be okay. She'll be better than okay... she'll feel safe, and comfortable, and accepted.

I thought about how I was always getting in trouble for having "fidgets" in class (my old-school favorite fidget was a retractable ballpoint pen with a button on top which I would click until my Spanish teacher took it away and gave me detention), and how we've come a long way in recognizing that fidget objects can be healthy devices which can help people concentrate.

I thought about how my fourth grade teacher called me out in front of the whole class for scrunching my nose like a rabbit, repeatedly, while I was silently reading, and how humiliated I was, and I was proud that my daughter felt safe enough to engage in her verbal "squawking" during times of stress and excitement, because we've never shamed her or tried to restrict it. It's just a really sweet, cute part of who she is.

And, just like that, ABA therapy was off the table for us, and for our children. We'd rather spend our time helping others to understand, accept, and embrace neurodiversity than spend it trying to mask the neurology and personalities of our children, who are amazing and perfect, as they are.

So, it's not so much that I want to be right about ABA as it is that I want others to consider that they may have it all wrong, when it comes to educating and serving autistic children. What if there's a better way? What if -- rather than trying to force them to be "less autistic" -- the best way to help them is to educate everyone else around them about neurodiversity? What if promoting autism ACCEPTANCE is superior to downplaying autism "SYMPTOMS/BEHAVIORS?"

Anywayyyyyyyyyy... I have to go back at 11am with Bravo tomorrow.

What do you want to bet that Mr. Psychologist will be all too keenly and freshly aware of my own personal hand-stimming (specifically, "clicking" my fingernails by placing my thumbnail under one fingernail, then pushing up and down, creating a satisfying series of  "clicks" as the nails pass over one another)?

Say "quiet hands" to me ONE firetrucking TIME... I dare you.



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42 comments:

  1. I can't help to think how confused you are about ABA. You can and should voice your experiences but once you start to make blanket and really generalized statements about things, that you may not be as knowledgeable as you think you are, you loose your credibility. Placing quotes around therapy when discussing ABA indicates how little you know. If you have had negative experiences with ABA, I am really saddened to hear that but I would hate for some family to read your blog and not seek out EBP (like those found in ABA) to help them.
    S.Cuddus

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    1. Whoever you are, you may not have any credibility yourself. You totally miss the point of the post is you are concentrating on whether there are quote marks or not. Have you read the books she linked to? Have you talked to grown adult NDs who can tell you what happened to them with ABA and how it affected them? You certainly don't answer with any evidence of actual effective therapeutic results here, just a vague attack on the post because of an antipathy to quote usage. So educational for the rest of us....

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    2. Yikes. ABA is abusive to autistics. We were not designed to work that way and our job isn't to make NT's more comfortable around us...

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    4. Amber, how would you suggest autistics compromise to make neurotypicals feel more comfortable?

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    6. I don't buy into the neurotypical- Neurodiversity paradigm. It's like calling green, brown and blue color typical because they are common colors and red and yellow colordiverse. Build bridges not walls where they don't need to be labels build walls we are all individuals like the colors of the rainbow we all should be healthy and full of our selves not sick and ill. Autism is like a car with wheels that doesn't work not different types or kinds of wheels.

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  2. Thank God At least one sane person who just cant stomach ABA For me... now I have a dog... and Im training said dog... I am physically sickened by the thought that it was only that you have to draw out your superannuation to afford ABA... that my darling Samuel wasnt subjected to it by the one person who loves the most.

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    1. One of our greatest blessings came in the form of not having a provider anywhere near us.

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  3. I'm a provider of ABA services and on the spectrum myself. The horrors of ABA happened before there was an ethics board, and licensure requirements. A lot of things have changed since Lovaas. The medical field used to operate on people without anesthesia, but that changed too. Psychologists used to drill holes in foreheads and give lobotomies on the regular. See how fields change?

    I think what saddens me most is the blanket statements about ABA. I never discourage stimming unless there is reason why it is necessary. (I.e., parents are upset it takes 1 hour for kid to eat dinner because of continual hand-flapping. Then I might target decreasing hand-flapping during mealtimes.)

    And just so you know, most of us don't use the term "quiet hands" for stimming. Not sure where you picked that up. I use "ready hands" when it's time to work, but that is regardless of hand-stimming. It just means, "get ready".

    I just hope your perspective of ABA doesn't discourage parents from looking into ABA. It's amazing field that teaches kids HOW to learn.

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    1. ^Not sure why it posted it as anonymous... My name is Lauren Pazik and I'm not shy with my opinions. :-)

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    2. Hi, Lauren. You can't possibly know where I "picked up" the term "quiet hands?"

      I've got a list of moms of autistic kiddos in ABA I can refer you to. I've personally witnessed parents holding down their children's hands to prevent flapping or stimming, while saying, "Quiet hands..." You know, to get their child's 40 hours in.

      And every #notmyABA practitioner/apologist who doesn't decry the continuing of these practices is a #notmyABA practitioner/apologist who quietly condones it.

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  4. Aba does not attempt to fix autism. It gives those with a diagnosis autonomy. Teaches life skills systematically. I'm sorry you had a bad experience. There are some pretty amazing bcbas out there. Check out behavior babe.

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    1. Okay. Cool. I wasn't able to access her website. It seems to be down.

      I did find her Facebook page, though.

      The first thing I saw was a video about some sort of click-based training that appears to be identical to the training used by the dog kennel facility down the street from my old office.

      Please see Lei's comment, below, about how treating autistics like dogs is not helpful, and does not make us better.

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    2. You are right about ABA not fixing the actual illness or issues or root cause for the behavior we call autism. We need legitimate cures we need a person who struggles not to hide their struggles, however instead to overcome their struggles a.k.a their autism.

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    3. I think you missed where the original poster said autistic people don't need to be fixed. "Cured" is just a synonym four "fixed".

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    4. I know what land I am in which is land that disagrees with me and I have no problem talking to people who disagree.

      Hello oedalis, many, but not all hold these opinions that autism is a good or neutral thing. Some have even admitted autism is a bad thing and are proud of it being such to have autism. Lots of red flags in the disability pride movement.

      Do you drive? Has your car ever broken down and if so, did you try to fix it or accept it for what the car is now? How about when you buy a new product at the store and it doesn't work do you accommodate the products lack of function or do you try to fix the product or return it? Isn't that prodicablism? Or objectablism? If autistic people have some kind of brain problem who are we to say it doesn't need to be fixed what logic is that? Legs that don't work should not be embraced as unique they should be fixed or else it defeats the purpose of having legs in the first place.

      The DSM is controversial and autism is a controversial diagnosis because it has no scientific biomarker background or identity or much logical reasoning to justify nearly any DSM label. We are living in an age of industrial toxicity, so the rise of what we perceive as autism or other weaknesses medical or psychological might actually be rising. I am open to listening to counterclaims, I believe in free speech within reason so if anyone disagrees I would like to hear from you and maybe address your concerns or needs.

      Hope we come to an agreement after listening to each-others concerns with each-others opinions or perception or interpretation.

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    5. You know, it's really hard to 'come to an agreement' with someone who thinks I'm broken.

      My position is that I am an autistic person and I deserve to exist as I am.

      Your position is that I don't.

      That's not something I can compromise on.

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  6. As a kid, I played baseball briefly. My coach hit me in the head with a pitch. We didn't have batting helmets at that point. I didn't play much longer after that. I tried karate but I quit after the sensei kicked my 7-year-old testicles. These incidents happened more than three decades ago. While the same things could potentially happen to a kid today, the likelihood has been significantly reduced. This becomes especially true regarding childhood memories.
    ABA is a very young field. Being fairly new in the grand scheme of things inherently causes skepticism with some folks. So, of course one would want to do some research. When conducting research, nothing carries more significance than analyzing the validity of sources. For some folks, the contradictory anecdote will always outweigh mountains of evidence. However, people are always more motivated to express displeasure than contentment.
    Several comments have apologized for bad experiences the writer has had with ABA but it seems like there hasn't been any experience with ABA. I'll share my experiences though.
    We have two littlest that receive 40 hours a week of ABA. Our most positive experience came with an experienced BCBA who worked with our daughter for 3 hours a week. She helped my baby kid learn more than anyone else in any amount of time. We'd hire her full time if we could. Our second experience wasn't good. It wasn't a nightmare though. The team just wasn't good. Our current team is much better.
    We don't do ABA to hide their autism. We do it because we want them to be as independent as they can be & live the life they want.
    As with anything, ABA providers exist within a spectrum. Some will be more hardline & others won't be. Most are going to work with the parents on specific goals & adapt to the parents' philosophy to some degree. We've always been presented with options.
    I'm constantly examining my actions to see if my helping or enabling. Kids of any neurology are going to do as much as they can to get out of what they don't want to do.

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    1. ABA is hardly a "young field." Its beginnings can be traced back to the 1960s. Its roots are found within Behavioralism, popularized by B.F. Skinner and Pavlov.

      That is to say, the foundation of ABA relied upon, and was crafted upon, a model which looked at strictly behavior, without regard to thoughts, experiences, needs or feelings that may produce the behavior.

      My "experience" with ABA:

      I've watched parents of children in ABA get their 40 hours in by doing things like holding their child's hands down to prevent flapping, and repeating "quiet hands" until the child complies.

      I've watched parents get their 40 hours in by withholding affectionate gestures until a child makes eye contact.

      I've watched my child endure demands that are literally painful for her, or prevent her from feeling safe or concentrating ("look at me," "stop chewing your shirt") from educators and staff who have tried to insist that these must be goals for her education, and that reward-based compliance, drawn from ABA workshops, is the way to achieve them. (I have since put my foot down, and mandated that all such goals be removed from her IEP).

      I've talked to, read, and asked questions of #actuallyautistic people who have experienced ABA. Of all of them, one single person has come forward and said, "ABA helped me." She did not begin ABA until she was a teenager. So, in my wide network of autistics, ONE -- who did not experience ABA as a child -- has said ABA did not harm her.

      As for your kiddos, I am eager to hear from them, personally, when are older. Perhaps their experience will be wonderful, and life-enriching, and they will be better for it.

      Time will reveal much, I'm sure.

      Until then, I feel it's appropriate to allow autistics to speak for themselves, no matter how well-intentioned their parents are.

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    2. I hear you saying you've watched these kids getting 40 hrs in, etc but in what regards? Were you implementing? Was it you own child? I highly doubt you've watched 40 hrs of ABA therapy unless you have direct experience. But let me reiterate, I am on the spectrum. I have my own kids on the spectrum, so please listen to my story. You may see me as an ABA apologist, but you are dismissing me as an autistic person with my own point of view JUST because it is contrary to YOURS. You said your child is on the spectrum, what about you? How is your authority any different than any other parent with a kid on the spectrum? I use ABA principles on myself and with my own children. We work WITH parents. In fact, if you tell your child to eat their veggies and then they can have dessert, that is using ABA priciples.

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    3. I'll give you credit, Lauren... My husband said, "Do these commenters know you're autistic?" You're the first one to ask. :)

      Lord, no. I haven't watched 40 hours of ABA. I've seen other parents, committed to the 40 hours mandate, executing the actions described above (holding down hands, withholding affection, etc). I've directly asked several of those parents why they're doing (action), and they've told me it's part of their child's ABA. I couldn't watch that for 40 hours.

      I dismiss no one's experience as an autistic. Yet, you seem to dismiss mine and my family's by suggesting we just aren't enlightened/educated/experienced/open enough to recognize how we (and others like us) need ABA in our lives.

      You seem to be dismissing the experiences of autistics who have said that ABA harmed them. I've linked three. There are many, many, many more. There are an abundance of ABA survivors.

      I also recognize it's possible to be both autistic, and an apologist for things that autistics at large say hurt them (ABA, PFL, pro-functioning labels, etc).

      *My* authority on *my* kids is absolute. My post says ABA is off the table for our family. There is no authority that supercedes that.

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    4. I agree with you that ABA is harmful however I still believe we should look for a root cause and a cure for ASD.

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    5. No. Autism doesn't need to be cured. It is part of who a person is.

      Does homosexuality need to be cured?

      Does ethnicity need to be cured?

      Does red hair need to be cured?

      Anything that is harmful or damaging, and can be cured without taking away a person's identity... sure go ahead and cure that. Cure cancer. Cure eczema. Cure hearing loss.

      I understand that you would prefer we don't exist, but we do, and we don't need to be cured of our existence.

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    6. Hello Christina, It is important to remember not every autistic or person with autism holds the save views that you do and it is not fair and unjust to take away their right to a cure. In regards to identity first language, calling me an autistic person is like calling a blind person the boy in glasses it is rude in my opinion and as someone who sees autism as a problem of some kind I don't like it and I can't cover for it.

      In regards to what does and doesn't need a cure, illnesses and afflictions and anything bad needs a cure. Diversity is like the cars we have, they are all different, however they all can run and when they can't, we fix them same with mental illness and people when we get sick we get a cure.

      Yes, I would prefer autism didn't exist that doesn't mean I would prefer you didn't exist because you are not autism because autism is a lack of mental health not a different brain and I would even go as far as to say it is a misleading label not based on science and is not reliable.

      Autism is not an identity, is my cowardly behavior my identity or my affliction same with autism.

      www.seeingclearlymedia.weebly.com --- my website) I write about autism frequently.

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    7. Describe me by my abilities and identities not my disabilities and diagnosis, there is a difference.

      The girl in beautiful blond hair VS the girl in hearing aids and glasses. One is offensive and one not so much.

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    8. Thank you for sharing your link. I WILL read it. I deny no one a voice or an opinion.

      However, I do deny people the opportunity to diminish or take away what others have claimed in their self-advocacy.

      For many, autism IS an identity.

      For those who yearn to separate themselves from their autism, my heart mourns for them, but I do not deny them their voice or their view.

      I haven't read your blog, yet, so I'll end it here, with a message that I do hope every autistic (or person with autism, for those autistics who prefer to be referred to in PFL) finds self-love, acceptance, and empowerment.

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  7. You can teach autistic people skills and autonomy without attempting to manipulate them. You can teach autistic people skills and autonomy from a place of respect.

    Manipulating a person's behaviors to get someone to do what you want is abuse no matter what you call it. Yeah some ABA practitioners have stopped using aversives (but not all of them have) but rewarding desired behaviors is still abusive! It is cruel.

    Treating autistic children like dogs is not helpful. It does not make us better. It makes us broken and traumatized for the convenience of others.

    I know EXACTLY what ABA is but maybe everyone so quick to defend it should spend a little time listening to the survivors.

    This author already got you started by linking to 3 survivors stories. I promise you there are many more.

    Accommodation and support are what autistic people need. Not conversion therapy to make us less embarrassing for nt people to deal with.

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  8. Just curious, is there a need to call an individual an "autistic"? It appears that the original author appears to place that label in front of a person. It's be more appropriate, at least in my opinion, to identify people first. For example, a kiddo who has been diagnosed with autism or a child with autism places the individual before the diagnosis. After all, it's a person we are talking about not a label.

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    1. My name is Loren Houle. I realized it wasn't identified after I posted. I'm a Nationally Certified School Psychologist and working to obtain a BCBA credential. I must admit there appears to be some concerns in the original post as well as follow up comments, but to each their own. Let's keep in mind that we need to keep the well-being of children at the forefront.

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    2. Hi, Loren. Thanks for asking.

      The identity-first language (IFL) vs. person-first language (PFL) question is a good one, and one I'm happy to answer.

      The short answer is: When in doubt, ask an autistic!

      The autistic community largely prefers IFL, because autism is part of who we are. It is part of our neurology. It cannot be separated from us.

      A person in a wheelchair should never be called a "wheelchair person," and if the need for the wheelchair was removed, they would still have the same neurology. They would be the same person, except without a wheelchair. :)

      We can't say the same for autistic individuals. Autism can never, ever be removed from us, and if it could, it would result in "us" no longer being... well, "us."

      That's why most autistic self-advocates prefer IFL.

      That's not to say that *some* don't prefer PFL. Maybe they were exposed to it in their youth and it feels comfortable for them, or maybe they have an identity which they choose to stress above autism, or maybe it's another reason.

      However, IFL is generally accepted among autistics, and -- if you really aren't sure -- just ask the person. The PERSON, not their caregiver. Not a family member. The person.

      Also, as someone who was NOT diagnosed in childhood, I had the same question when I came to the autism community, and I'd been taught to think that IFL was offensive.

      When I spoke with fellow autistics and asked their preferences, I truly listened, and realized how much sense it made, and that it felt right, in my heart, for me, as well.

      Here's a pretty good read, if you'd like to learn more:

      http://autisticadvocacy.org/about-asan/identity-first-language/

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    3. Most Autistics don't prefer "person first" language. I am autistic, I am an autistic, I'm not a person with autism. I can't set my autism down and walk away from it for awhile - it is what makes me who I am. Period.

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  9. First person language is the respectable way of referring to a person .

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    1. No. Person First Language is NOT respectfu, when the people themselves are telling you that's not how they want to be referred to.

      The autistic community has spoken. We say we want to be referred to, Identity First.

      We are autistic.

      We are not people with autism.

      We are telling you what makes us feel respected.

      For you to reject that is disrespectful.

      You're saying we don't know how we should be referred to, because we are autistic?

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    2. The problem with this is you and others view autism as an identity not an illness or stigma-label. I view autism as both a stigma label by society because we don't fit in and or an illness that needs to be medically cured. I didn't choose to identify as autistic that is society calling us autistic, just like it calls black people niggers. I don't want autism to be my identity that is wired and abomitable its like being called a nigger and being happy about it.

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    3. Here's the thing: YOU get to choose what is right/comfortable/safe for YOU.

      YOU can self-advocate in the way that serves you best.

      But everyone else gets to do the same.

      You'll see in my response to Loren that I said some autistics prefer PFL, and it's always best to ask the individual, if one isn't sure.

      My name is Christina-Marie. People ask me what I want to be called, and I say, "Christina-Marie."

      If they call me "Christina," "Chris," "Christy," "Christine," or anything else, it points to a lack of respect.

      Same goes for IFL.

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  10. The BACB was founded in 1998. Prior to that there were no professional BCBA requirements. So, yes, it is a very young field. Even if one wanted to start the timeline at 1960, in scientific terms, it's still very young. Compare it to physics or even chemistry. More about those in a moment.
    You cite ABA as coming from Behaviorism as a slight. Physics started out as nature studies. Chemistry goes back to alchemy. Science, including ABA, constantly progresses through searching for improvement in all aspects.
    I'm not the biggest fan of people first language because it's counterintuitive to how English works. However, I fully understand why some people prefer it. It has become my default out of consideration for others. I will point out that a previous comment by someone alleged to be respectful of preferred language but was absolutely disrespectful. Someone wrote "people with autism because some autistics prefer that." This person states that some people prefer one label but uses the non-preferred label as the actual label. It's illustrates disrespect because the non-preferred language is still used.

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  11. One more firetrucking time!

    "First and final" for you lot [behaviour people].

    And that would be "one trial learning" also if they did that.

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