aba – by sparrow rose jones

Ed note: I am so honored and grateful to be able to share what follows here. It was written by Sparrow Rose Jones, who calls herself as “a middle-aged Autistic adult.” She is an author, a composer, an artist, and a self-described polymath (which I had to look up and might now be my new favorite word.) 

When I read the following post on Sparrow’s blog, Unstrange Mind, I immediately added it as a permanent link in Diary’s blog roll. I then asked her if I could share it here in full. The topic at hand, ABA therapy, is a messy one. Its history is disastrous and its legacy often incredibly painful. Given the depth of emotion surrounding it, it can feel nearly impossible to navigate, and even more impossible (okay, I know that’s like infinity plus one, but go with it) to figure out what the hell to do. 

That’s why I’m so incredibly grateful that Sparrow said yes. This is what she wrote.

This week, I watched a community implode. I’m not going to talk about that, though, because it was very painful to watch people I love being treated so badly. But a lot of the implosion centered around a topic I do want to talk about. That topic is ABA – Applied Behavior Analysis, a common type of therapy for Autistic children. I watched people fight around in circles, chasing their metaphorical tails. It will take some time and lots of words to unpack this topic, but I hope you will stick with me on this because it’s so important and there is a lot that needs to be understood here.

Here’s the argument in a nutshell. It gets longer, angrier, and much more detailed than this, but I am exhausted just from reading the fighting, so I’m boiling it all down to two statements. And both statements are correct.

Autistic adult: “ABA is abuse.”

Parent of Autistic child: “I’m not abusive and my child is benefitting greatly from ABA therapy.”

You read me right: both statements are correct. That is part of what I need to unpack today. I think the best place to start is with the fact that both people above are using the term “ABA”, but what they are actually talking about are usually two different things. First we need to define ABA.

Well, actually, first I want to put people at ease. Parents — it’s got to be painful to feel like a whole group of people are ganging up on you and telling you that you are abusing your child. You love your child. You want the best for your child. You are spending thousands of dollars out of pocket to try to give your child the best possible chance in life. You worry about your child. You feel like you never even knew what love was until your child came along. You are not abusing your child. And if something you are doing is harming your child, you want to know about it and stop it. It hurts to be told that you are abusive toward the child you love so much.

And my fellow Autistics — you grew up feeling picked apart. You were subjected to things that harmed you. You still have PTSD today from things that may have been done with your best interests at heart but were actually quite damaging. You don’t fit in to the world around you and the adults who were charged with your care when you were growing up were stumbling around in the dark when it came to trying to figure out how to raise a child like you were. It is triggering to see that so many of the things that hurt you when you were growing up are still being said and done to and about children who are so very much like you were when you were their age. You want to stop the cycle of pain and you want children to grow up happy, healthy, and loved. It frightens and angers you to see many of the “best practices” that Autistic children today live with.

And there is a good chance that the two of you — the Autistic adult and the parent of an Autistic child — are not even talking about the same thing when you say “ABA.” Major organizations (particularly Autism Speaks) have lobbied hard for Medicaid and insurance companies to cover ABA therapy for Autistic children. As a result, many therapists now call what they do “ABA,” even in cases where the actual therapy is very different from genuine ABA, in order to have their services covered by insurance. It’s similar to the philosophy of therapists I’ve known who don’t believe in diagnosing mental illness but put a name on their patients’ struggles anyway because many insurance policies only pay for therapy if the treatment is for a diagnosis listed in the DSM. That’s the main point that I wanted to make, but there’s still a lot to say on this topic.

If almost everything is being called “ABA” then what is actual ABA? And why do Autistic adults say it is abusive? What sort of warning signs should parents be watching for? What is harmful about certain practices? Those are a lot of questions to answer, but I will do my best. Bear in mind that I’m not a therapist — ABA or otherwise — and I’m not a parent. I’m one Autistic adult, one person coping with therapy-induced PTSD, one person exhausted by the all-out war I see every day between people like me and people who love people like me, one person who wants to see a better world for everyone (but, I admit, especially for Autistic people.)

ABA was developed by Dr. Ivar Lovaas. As a 1965 Life Magazine article explains, the core theory of ABA was that a therapist, “forcing a change in a child’s outward behavior” would, “effect an inward psychological change.” The article says, “Lovaas feels that by I) holding any mentally crippled child accountable for his behavior and 2) forcing him to act normal, he can push the child toward normality.”

Much has changed, but this core premise of Lovaas’ work remains solid. ABA’s core belief is that forty hours per week of therapy geared toward making a child externally appear as “normal” as possible will “fix the brokenness” inside that made the child behave that way. ABA believes in an extreme form of “fake it until you make it,” and because it is behaviorism at its most pure — that is, a psychological science that treats internal processes as irrelevant to function (Lovaas said, “you have to put out the fire first before you worry how it started”) — it treats behavior as meaningless and unwanted actions rather than as communication.

This approach is troubling for many reasons.

ABA strongly emphasizes the importance of intensive, saturated therapy and insists that it is crucial to get 40 hours a week of therapy for very young children. Think for a moment how exhausted you, a grown adult, are after 40 hours of work in a week and you will begin to understand why we get so concerned about putting a three-year-old child through such a grueling schedule. Being Autistic doesn’t give a three-year-old child superpowers of endurance. Forty hours a week of ABA is not just expensive, it is painfully exhausting. ABA maintains a schedule like this with the intention of breaking down a child’s resistance and will.

I understand that you are afraid for your child. Their future is unknown. You are worried about their ability to live a fulfilled life. You are worried about their ability to have self-supporting work and be taken care of after you pass on. And I understand that this fear, coupled with a deep desire to give your child the best you can give them, can lead you to accept the ABA attitude of “more is better.” But stop a moment and think about the capacity for sustained focus of the average three-year-old and consider what a therapy that tries to double (or more) that capacity is doing to a child. If you stress a child out or even traumatize them with extreme therapies, you are paradoxically increasing the chances of incapacitating PTSD in the child’s future. Yes, you want your child to develop as much as they are able to develop and you want them to enjoy their life and hopefully provide for themselves, but exhaustion and trauma are not going to aid those sorts of development.

Worse than the exhaustion of so many hours of therapy, though, is the heavy focus on making a child “indistinguishable from his peers.” The main goal of ABA is to make a child LOOK normal. This is insidious for a few reasons. first, it is the best way to get the parents to continue to co-operate with the therapists for many years. Of course you are going to be moved to tears if the therapist gets your child to look you in the eye or say “Mommy” to you or sit at the table and eat a meal without fidgeting or melting down. Of course you will feel like the therapist is making progress and healing your child. That is a very natural response. So you will see the progress and you will want to continue with ABA therapy and you will be very defensive when adults Autistics online suggest that what is happening in your home might be a bad thing. What was bad were fights every mealtime. What was bad was never hearing your child’s voice. What was bad were the judgmental or pitying stares you and your child got when you went out in public and people saw your child spinning around or flapping her hands or becoming so anxious you were forced to leave your groceries unpurchased and flee the store.

But if your child is getting classic ABA therapy, what you are seeing is an illusion. And what looks like progress is happening at the expense of the child’s sense of self, comfort, feelings of safety, ability to love who they are, stress levels, and more. The outward appearance is of improvement, but with classic ABA therapy, that outward improvement is married to a dramatic increase in internal anxiety and suffering.

ABA therapists are trained to find out what your child loves the most and hold it ransom. Often, it’s food. If your therapist suggests withholding food as a form of behavioral therapy, run screaming. That is harmful. If your child’s therapist will not allow you to remain in the room during a session (they will usually tell you that your presence will be a distraction that will keep your child focused on you instead of on the therapy they need to be paying attention to) that is a big warning sign. If you are able to witness your child’s therapy sessions and your child is spending a lot of time crying or going limp or flopping on the floor or showing signs you recognize as indicators of anxiety or fear, beware the therapy. If the therapist insists on pushing forward with the therapy when your child is crying or going limp instead of giving your child recovery time, run screaming. Therapy that trades your child’s sense of safety in the present for a promise of future progress is exactly the sort of thing that Autistic adults mean when they talk about abusive therapy.

Therapy should make your child better, not traumatize them, possibly for many years, potentially for the rest of their life. A therapist might tell you that “a little crying” is a normal thing, but I was once an Autistic child and I can tell you that being pushed repeatedly to the point of tears with zero sense of personal power and knowing that the only way to get the repeated torment to end was to comply with everything that was asked of me, no matter how painful, no matter how uneasy it made me feel, no matter how unreasonable the request seemed, knowing that I had no way out of a repeat of the torment again and again for what felt like it would be the rest of my life was traumatizing to such a degree that I still carry emotional scars decades later. It doesn’t matter whether the perpetrator is a therapist, a teacher, a parent, or an age-peer: bullying is bullying.

In my opinion, the goal of therapy should be to help the child live a better, happier, more functional life. Taking away things like hand flapping or spinning is not done to help the child. It is done because the people around the child are uncomfortable with or embarrassed by those behaviors. But those are coping behaviors for the child. It is very important to question why a child engages in the behaviors they do. It is very wrong to seek to train away those behaviors without understanding that they are the child’s means of self-regulation. When considering whether you have made a wise choice in what therapy you are providing your child or not, you want to always remember a few cardinal rules: behavior is communication and/or a means of self-regulation. Communication is more important than speech. Human connection is more important than forced eye contact. Trust is easy to shatter and painfully difficult to re-build. It is more important for a child to be comfortable and functional than to “look normal.”

Work on things like anxiety and sensory issues first. Work on getting better sleep (both you and your child). Things like eye contact can come later, much later, and only if your child is comfortable with them. There are work-arounds. Lots of people fake eye contact. Lots of people have good lives with minimal or no eye contact. But forcing a child to do something that is deeply painful and distressing for no reason other than to make them look more normal is not just unnecessary, it is cruel.

I live two blocks from a behavioral clinic and I frequently walk several blocks out of my way to avoid walking past it because of the kinds of things I have seen when walking past the clinic. Let me tell you about the last thing I saw there, the thing that made me decide that I would rather walk an extra half-mile than risk seeing more ABA therapy on the sidewalk in front of the clinic.

A mother and father came out of the clinic with a little girl, around 7 years old by my best guess. Mother said, “Janie (not the actual name), look at me.” Janie didn’t look at her mother. The mother said to the father, “you know what to do,” and the father took hold of Janie and turned her head toward mother, saying, “look at your mother, Janie.” Janie resisted, turning her head away and trying to pull out of her father’s hands.

Mother crouched down and Father lifted Janie’s whole body up, laying her across Mother’s knee, face up. “Look at your mother, Janie,” father said. “Look at me, Janie,” Mother said. Janie began to whimper. Her body was as stiff as a board. Father held her body firm and Mother took hold of Janie’s head, “look at me, Janie,” Mother said.

I was glued to the sidewalk. I didn’t want to see any more but I couldn’t look away, couldn’t walk away. Janie began to moan and thrash her body. Father’s hands held her body steady as she kicked and flailed. Mother’s hands held Janie’s head steady. Both kept urging Janie to look at her mother. Janie’s moans turned to screams but neither parent let her go.

Finally, Janie’s entire body went limp with defeat. She apparently made eye contact because Mother and Father began to lavish praise on her. “Good girl, Janie. Good eye contact. Good girl. Let’s get some ice cream now.” Janie’s limp body slid to the sidewalk where she lay, sobbing. Father picked her up and carried her to the car, the whole way praising her submission. “Good eye contact, Janie.”

a drawing of eyes looking away with the caption forced eye contact hinders human contact

(This image – a drawing of eyes looking away with the caption
“Forced eye contact hinders human contact” – is a sticker and is also
available as a light t-shirt or dark t-shirt in adult and children’s sizes.)

What did Janie learn that day? I’ll give you a hint: it was not that people are more trusting of those who make good eye contact. It was not that she will appear more normal and thus fit into society better if she makes good eye contact. It wasn’t even that Mom really loves it when Janie connects with her through the eyes like that.

Janie learned that adults can have whatever they want from her, even if it hurts and even if they have to hurt her to get it. Janie learned that her body does not belong to her and that she has to give others access to it at any time, for any reason, even if she wasn’t doing anything that could hurt herself or others. Janie learned that there is no point in resisting and that it is her job to let others do what they want with her body, no matter how uncomfortable it makes her.

You may think I’m exaggerating or making this out to be more extreme than it is, but stop for a moment and imagine years of this therapy. Forty hours a week of being told to touch her nose and make eye contact and have quiet hands and sit still. A hundred and sixty hours a month of being restrained and punished when she doesn’t want to touch her nose and being given candy and praise when she does touch her nose for the 90,000th time. Nearly two thousand hours a year of being explicitly taught that she does not own her body and she does not have the right to move it in ways that feel comfortable and safe to her. How many years will she be in therapy? How many years will she be taught to be a good girl? To touch her nose on command? To make eye contact on demand? Graduating to hugs, she will be taught that she is required to hug any adult who wants a hug from her. She will be punished when she does not hug and praised and fed when she does.

And who will protect her from the predator who wants to hug her? Who will teach her that she is only required to yield her bodily autonomy for her parents and therapists but not for strangers? What if the predator turns out to be one of her therapists or parents? How will she resist abuse when she has had so many hours of training in submission? Therapy is an investment in the future, but ABA therapy is creating a future for Janie of being the world’s doormat. Is that the future Janie’s parents want for her?

If your child’s therapist believes it is more important for your child to comply with every command than to have any control at all over his or her body, run screaming. And don’t forget that a layer of training does not change the underlying neurology. ABA uses the same methods and theories as dog training and if I train my dog to shake hands, it doesn’t make him more human. It just makes him a dog who can shake hands. Similarly, if you train an Autistic to make eye contact and not flap their hands and say “I love you, too” and stay on task, it just makes them into an Autistic who can fake being not-autistic with some relative measure of success. Underneath the performance is still an Autistic brain and an Autistic nervous system and it is very important to remember that. Being trained to hide any reaction to painful noises, smells, lights, and feelings doesn’t make the pain go away. Imagine years of living with pain that you have been trained to hide. How long would it last before you broke down? Some Autistics last an amazingly long time before they break down and burn out.

And intensive ABA therapy will also teach a child that there is something fundamentally wrong and unacceptable about who they are. Not only is that child trained to look normal, they are trained to hate who they are inside. They are trained to hate who they are and hide who they are. They will work very hard to hide who they are, because they have learned to hate who they are. And as a result, they will push themselves to the brink of destruction. And when they finally crumble from years of hiding their sensory pain and years of performing their social scripts and blaming themselves every time a script doesn’t carry them successfully through a social situation, they will be angry at themselves and blame themselves for their nervous breakdown and autistic burn-out.

All those years of ABA therapy will have taught them that they are fundamentally wrong and broken; that they are required to do everything authority demands of them (whether it’s right or wrong for them); that they are always the one at fault when anything social goes wrong; that they get love, praise, and their basic survival needs met so long as they can hide any trace of autism from others; that what they want doesn’t matter.

Now you know what to watch for. Your child’s therapist may use the term “ABA” in order to get paid, but they might not be doing these harmful, degrading, abusive things to your child at all. If your child’s therapist is respecting your child, not trying to break down the child’s sense of self and body-ownership, treating behavior as communication rather than pointless motions that need to be trained away, valuing speech but not at the expense of communication, giving your child breaks to recover and not over-taxing their limited focusing abilities . . . then they can call their therapy anything they want to, but it is not ABA. (And hold on to that therapist! They are golden!)

And I hope that the next time you hear an Autistic adult say that ABA is abuse, you are compassionate. Remember the suffering so many of us endured. Know that we say those things because we love your children and want to help them. We do not say them because we hate you and want to call you abusers. We don’t hate you at all and we want to help you. Sometimes we are clumsy in how we go about it, because, well, we are Autistic and communication difficulties are part of that package. But know that when we attack ABA, we are not intending to attack you. We want your child to sleep through the night and laugh with joy and become toilet trained (on whatever schedule their bodies can handle — don’t forget that we tend to be late bloomers), and have a healthy, happy, productive, love-filled life.

We want you to rejoice in parenting and connect with your children on a deep and meaningful level. When an Autistic adult says “ABA is abuse,” you might be tempted to hear, “you are abusing your child.” But that is not what we are saying. Next time you hear an Autistic adult say “ABA is abuse,” please hear those words as, “I love you and your child. Be careful! There are unscrupulous people out there who will try to convert the fear you feel for your child’s future into money in their pocket at the cost of your child’s well-being.”

And if you are a therapist and you are upset when we say “ABA is abuse”, know that we are not talking about you . . . unless you are using shock punishments or making children endure long hours of arduous therapy beyond their ability to cope or teaching children that they do not have the right to say who can have access to intimacy with their body or not (and forced eye contact is a particularly nasty violation of a person’s control over their bodily intimacy.) If you are not the kind of therapist who we are talking about when we talk about the harm of therapy, then we are not talking about you! Thank you for being one of the good guys. We need more like you. Teach others what you know. Spread the love and help change the world, please!

Thank you for reading all of this. I know it was a lot of words, but this is such an important topic. The children are the future and I don’t have words to explain how painful it is when I see Autistic adults being verbally bullied and abused because they are trying to help the children by helping parents to understand more about the lived experience of autism and more about the kinds of things that can be very harmful to Autistic lives. I had over a decade of therapy in my childhood and much of it was not good therapy and I am explicitly damaged because of it. When I say ABA is abuse — when we Autistic adults say ABA is abuse — we are speaking from a collective wisdom gained through painful experiences that have left lasting scars on us. We don’t want anyone else to have to go through the pain we have gone through. Please respect where we are coming from and please do not add to the trauma by attacking us for trying to help others. Thank you.

 

43 thoughts on “aba – by sparrow rose jones

  1. I am left speechless……our world is not autism but developmental delay, sensory issues and probably a metabolic disorder in addition to another. But our world and my child’s needs overlap with what is so well described here.
    Thank you for sharing……we made progress thanks to caring, special people who wanted the best. We developed skills on his timeline and not the norm.
    For a million reasons I needed this today of all days.
    Peace

  2. Thanks for you insight. I could not afford the hours of ABA when my son was little. He received about 4 hours a week of ABA and I saw EXACTLY what you described. I am thankful I saw the light. He is now 13 and talking since about 7. He is a gifted violinists. Last night he paced back and forth as his played. No one corrected him he is quirky and wonderful.

  3. This makes me angry, sad and utterly grateful that ABA was neither suggested nor something we thought out for our child.The idea that you teach a child to fit into the world by breaking them down,by removing their own very useful if strange methods of coping with stresses,by taking away their ‘being’, by forcing on them behavior or interaction they neither desire nor want , is a very lazy and dangerous one.Teach your child how society works,what behavior is acceptable in private,public or not at all,how one takes care of ones self,set expectations that are possible within your child’s ability,but don’t deny them what is essentially a huge part of their being, not a flaw or mistake that must be corrected.ABA strikes me as a method to correct autistic people for the benefit of society, not the benefit of the autistic person them self.

  4. Thank you so much for sharing this. I think defining what ABA is in this helps so much. Our daughter attends “ABA” but it has nothing in common with this description (15 hours a week in our house and I guess maybe would best be called floor time maybe? I just know she loves it and cries when her therapy is cancelled and I’ve never seen her forced to do anything.). I do feel like a big part of the disagreements are over not quite understanding the differences these days between what is labeled ABA and what actually is ABA (this actually cleared quite a bit up on why the disagreements were happening for me!).

  5. Brilliantly said! And you show that autistics can indeed have excellent perspective taking skills. For parents…we used RDI and Floortime with our child with autism, which starts with engaging the child in play that is fun for them, but subtly works on skills. You only build social motivation if your child finds playing with you fun.

  6. Wow. That was hard to read, I am thankful that you wrote it and so sorry that you lived it. When my guy was younger I bought in to “help him be normal” before I found a community that has taught me to “help him be M.”

  7. Sparrow, thank you. From the bottom of my heart. This is the most cogent explanation of ABA and why there’s so much conversation and misunderstanding among all parties in this: parents, autistics, and therapists and teachers.
    I consider us one of the lucky families/ we’ve had teachers and therapists from day one who understood behavior is communication and who looked at sensory/anxiety/environmental factors first and helped my sons learning self calming tools and advocacy skills without extinguishing the things that make them them. We’ve removed “eye contact” goals and moved away from “noncompliance” as a data point and look more at triggers and alternative spaces to recoup. And now I realize I need to hold on to these teachers and therapists forever 🙂
    Thank you for putting yourself out there with this. You’ve made the world a more understanding place today.

  8. Thank you for this informative article. I had a feeling all along that this was how it felt. There are definitely a few years I’d like to do over for my twin boys. But, I can only make the future better and pray to God he heals whatever trauma they endured. Thank you.

  9. I am a substitute teacher this year for the first time. I just went into a classified ABA class this past tuesday. I was not prepared for what I was walking into. I am not a classified teacher to be able to help these children. I was just a regular sub coming into “help” I tried to follow what they were doing but all day it felt so wrong. At my lunch break I went to my car and sobbed. I cried and cried. I just felt like it was all so cruel. I know they were trying to help these kids but to just say over and over the same things and then point and then show pictures and physically put their hands down etc it was exhausting. What was the big deal if they didn’t hold their hands behind their backs as they walked?! Then we went to sensory group and if a child got to “wound up” they needed to be pulled away. so it went from one minute they were happy and engaged to pulling them away crying and making them “calm down” with pressure. I didn’t get it or understand it. It did feel like bullying and it did look like cruelness. Now that I read this blog I get what you are saying. Why force these kids to be more “normal” just so everyone around them can not be uncomfortable. would you make someone blind not use a walking stick so they can look more normal? no that would be ridiculous. Thanks for this info. I don’t think I can go back to the ABA class again.

  10. I guess I need to comment directly on the author’s blog in order for her to see. But I’ll do it here first nevertheless. My daughter has in-home ABA twice a week for 3 hours total. They are very big on taking data and whenever I bring up an issue in behavior I am asked to take lots of detailed notes. About when/how it happened and what the result is. They will analyze it (to figure out the reasons for the behaviors I suppose) and then come up with a plan to change it. I guess that doesn’t fit into the ABA therapy the author is referring to. I think ABA has changed a lot in the past decades.
    Of course, as a parent of autistic child, I do need to keep in mind what’s really important and remember to respect my child’s neurology/the way she is. And I thank her for bringing up this very important core issue – it’s a question I’ve always wrestled with. (How do I help her learn and grow and be able to function in this NT society without making her feel more pain or loose self-worth).

  11. Thank you for this well written and fabulous piece Sparrow. But even more so… thank you for opening up and sharing your personal experiences so you can educate us and help us understand things a little better. The world is indeed a better place for my son because of folks like you who are making the path he may choose to take one day a little less bumpy! I would love to have you write something for Zoom Autism Magazine!!!

  12. This is a wonderful post. Baguette is authorized for 25 hours a week of ABA, which is provided in her day care in the mornings and in our home in the evenings. But what we’re doing does not reflect the negatives. Our providers have always encouraged us to participate as fully as possible; one of us is always in the room and usually immersed in the programs with Baguette.

    The providers always give her the opportunity to say she needs a break. Sometimes Baguette will ask for food as an avoidance technique; we let her do it, because that’s one of her ways of getting a break when she needs it.

    We don’t necessarily get the full 25 hours a week. I’m not that concerned about it–I think a regular schedule and frequency helps her, but I know that as a four-year-old, her every day is filled with learning and mastery before the ABA work enters the picture. If we don’t get all 25 hours in, that’s okay. She’s probably done plenty.

    And when we’re not comfortable with a technique, we let the providers know. They have always respected us as the experts in our daughter.

    My goal for Baguette is to give her a wide range of skills that she can choose from as she deems appropriate. I don’t want to make her different; I want to make her confident about her abilities to determine her own actions in a given situation. I don’t want her to feel that she lacks the ability to interact with people in particular ways; I want her to feel that she has options.

    I’m really grateful that we have the providers we do. I’m really sorry that other people have had and are having damaging experiences. That should never be the point.

  13. I’ve heard of something similar being performed in a school, one of the last of it’s kind that does this, by the way. They believed in electroshock therapy to control behavior, and I remember reading about one of their “advocates”, who was an autistic woman, who was forced to live at the center because she was an orphan. She was confined to a wheelchair (independent of what they were doing), ant they were describing how whenever she did something they didnt like, they just shocked her until she behaved. That’s basically making trained monkeys out of autistics, and children who dont conform in general-just because someone doesnt make eye contact, act “normal” or cannot stop stimming, doesnt mean that you have the right to treat them like some kind of circus animal, and train them to act like how you want them to act, and violate all of their rights. Forcing a person to do these kinds of things just gets you a trained actor, and one who’s broken on the inside, at that. I didn’t know these kinds of practices still went on, and now I am deeply disturbed by this info, but thank you for telling us, all the same (or else I might not have known that it still went on to this day, commonly.)

    • The Judge Rotenberg Center is indeed horrifying. And yet we still can’t seem to get the place shut down. Mystifying and heartbreaking.

  14. I am sorry you received such poor therapy as a child and I certainly don’t agree with the poor methods you describe. However, what you described is not ABA. What you described is pieces of information taken from ABA and applied inappropriately. ABA, Applied Behavior Analysis, is the science of behavior in the applied (real) world. Lovaas did not invent ABA. B.F. Skinner is recognized as one of the founding fathers of the science. And since it is a science, it was not “invented” but discovered and studied. The Lovaas study you refer to does not require 40 hours a week. The study had a range of therapy hours with an average of 40 hours a week for 2-3 years, starting at age 4. Those kids had better outcomes (in regular classrooms without supports in first grade) than the kids who had 10 hours or zero hours. Good ABA does not hold items hostage, does not make the child miserable. If you feel like your child is unhappy or that scared, those are signs that the provider is not doing good ABA. Good ABA will be fun and your child will enjoy their time. ABA is not a certain technique applied equally to all kids. ABA is the science of seeing why behavior occurs and teaching learning. I have worked with kids on the spectrum using ABA for over 10 years and the kids I work with are happy and run to greet me when I see them. Please don’t judge a field by bad experiences and misinformation. I encourage you to do more research at the following websites: http://www.BACB.com & http://www.abainternational.org

    • Lovaas “invented” the Lovaas method and thus brought ABA to the public. While it is technically true that ABA is actually the science and not the programming designed around it, the terms have arguably become indistinguishable from one another in common usage. As for the better outcomes in first grade, while I never want to speak for Sparrow, I think her point is that we have to be asking ourselves what are those better outcomes? Kids who can sit at a table and squelch their sensory reflexes? Keep quiet hands no matter how beneficial it is to flap them? Look a teacher in the eye no matter how painful? I don’t doubt that you are a warm and loving provider to whom none of this applies, but please don’t miss the point that we have someone here telling us, many many years after first grade has ended, that what looked like a better outcome for her externally was extremely damaging internally.

    • R. White – you said it yourself “Good ABA does not hold items hostage, does not make the child miserable.” That is EXACTLY what Sparrow’s post says. Please do not start from the defensive as an ABA practitioner. The fact that YOU practice with respect and sensitivity in no way negates the reality of Sparrow’s experience or anyone else’s. Practitioners like yourself are desparately needed in order to prevent such abuses from happening, but this will only occur when the “I don’t do this” response ceases to be the reflexive, go-to, dismissive response.

      Do not judge a field by your own performance within that field.

      I encourage you to search out the posts of adult autistics, and of parents of children who TODAY who have experienced the abusive applications:

      http://juststimming.wordpress.com/2011/10/05/quiet-hands/

      http://contemplativechaos80.wordpress.com/2014/06/30/aba-lesson-4-ditch-the-bad-therapist-a-mothers-horror-story/#

      http://loveexplosions.net/2013/09/13/touch-nose-gummi-bear-aba-in-our-family/

      http://emmashopebook.com/2013/11/05/more-on-aba/ (read the comments too)

      Please use your influence within your field to make things better.

    • I am not entirely sure how you can call this person’s own personal experience “misinformation.”

      I think the poster did an exceptional job explaining the difference between good and bad therapy, without needing to do anymore research….as everyone knows, a personal experience is worth far more than biased “research” written in a book/article, by the exact people promoting their line of work.

    • Having been a Discrete Trials therapist (Lovassian ABA) and having been a DIR/Floortime therapist as well, I can honestly say that even “good ABA” is not treating the underlying causes of Autism, it is typically correcting behavioral symptoms. Like an iceberg, what you see (observable, measurable, ABA) is only the tip, where there’s a lot more of the person under the surface. Sparrow and other expressive people with Autism have validated this, and I thank you Sparrow and others for highlighting the potential damage caused by bad ABA. Please see this wonderful alternative to ABA (good or bad) spawned from the DIR/Floortime model: http://www.playproject.org/assets/PLAY_Project_Home_Consultation_Intervention.1.pdf

  15. I am so sorry that this individual went through something like this!

    I am a parent of two ASD kids. We do ABA and it is NOTHING like this described above. It plays on my children’s strengths and with positive reinforcement the “bad behavior” has diminished over time because they have found a way to regulate themselves. They are helping to teach my children coping techniques and how to advocate for themselves!!!! They also help with academics, tons of social learning, thinking, and we are out in the community practicing it……I couldn’t be more happy with it!

    Now, if I saw any of this stated above happen in my house…….yeah, it wouldn’t be happening! Bottom line is Parents have to use judgment if this therapy works for your child. Obviously, this blog post as stated would not work for my children or family. But my ABA experience with my 2 kids has been remarkable and I would tell anyone to try it!

  16. this is beautifully written and says everything- i felt uncomfortable with advance kids… i am so glad that i followed my gut and stopped it

  17. I’m sorry for the poor therapy you received earlier in life, and I’m sorry, and I know people are still doing this. What you saw outside that clinic is absolutely nothing like anything I have done, or have suggested anyone do to a child.
    But, ABA doesn’t have to be about normalizing someone. It should be about teaching that person skills, to help the person be more indepedent. A child receiving therapy should learn skills that will allow him to make more choices in his life. When you are able to communicate, and when you are able to do things on your own, you gain choices about those things.
    Sure, parents are sometimes a distraction to a child. But, if a parent is totally not allowed to observe, and is not asked to participate at times, this is a problem. I mean, it’s just plain dumb not to conduct therapy in plain sight of parents as a simple matter of liability. Even if the parents are not in the room with me all the time, I want them to be able to walk by and see what I’m doing at any time. I want them to be able to hear what I’m doing. If the kid gets distracted, that’s nothing that can’t be worked on. Ultimately, it’s my job to try to make myself obsolete, so I’d better be trying to teach that kid to do the things I am teaching with his parents. Sometimes you might have to start out spying through a crack in the door, but there should always be a crack in the door.

  18. It took me half a year to convince the district to decrease the number of trials in each Aba program/task taught to my kid. They do 10 trials, my child needed less than that… After numerous meeting and discussions we agreed upon 5.

    Thanks God my child will not be tortured to do the same thing or answer the same question ten times in a row.

  19. Absolutely blown away: this is just the “argument” I’ve been having for years about ABA … it’s about time the professional community woke up to the conflict and decided to re-brand their various therapies to eliminate this confusion. I understand their need to get paid for their work, but I’d rather starve than be tarred with the ABA brush!

    Thank you so much for setting out the reasons for the conflict so clearly, and for pointing out how to avoid the “bad” versions of ABA. This is priceless information for parents struggling to cope with their quirky child and will hopefully help shape a generation of quirky, strong, independent autistic adults who are comfortable in their own skin.

    Well done original poster, thank you for sharing and exposing the damage that can be caused by “therapies”, and thank you Diary of a Mom, from the bottom of my heart, for sharing it.

  20. Wow, this is amazing. As a parent, I appreciate learning about what my child could be experiencing from the perspective of someone who is not nuerotypical and as a person, I appreciate the warmth and respect in the manner it was presented.

    One of the things I am most thankful for in life is the fact that we have been blessed with great teachers and therapists to work with us all as a family. I know that is not everyone’s experience and I hope that as stories like yours are shared that things will change for others.

  21. Thank you for teaching us with your experience. I am not autistic, and I have a memory that’s still painful to me thirty+ years later of a teacher holding my chin to force me to look in his face as he lectured me. To do that sort of thing constantly in the name of therapy is so cold-bloodedly cruel.

  22. I am so sorry you had to go through those horrible experiences. I heard Lovaas speak in 1987 in Boise Idaho. It was chilling. I walked away so confused by his heartless methods. I have now worked with individuals who are autistic for 35 years, and know the only approach is through kindness and love. All behavior is some kind of communication (says I, the SLP) and we all need to respect all human beings and non-human beings right to communicate. I hope and pray you can heal from your experiences. I admire your strength. ; )

  23. Thank you for reposting this and bringing this blogger to my attention. She is definitely one for the must-read feed.

    I sometimes wonder if flying under the radar all these years, “passing” as NT, was a boon in that I didn’t have to deal with ABA or anything like that.

  24. THANK YOU THANK YOU!!!! More people need to know about this!!! This is why my kids will never have to endure this! We as a world need to start learning acceptance for things that are different! God bless you for this blog.

  25. What an incredible and powerful piece of writing. This is a must read for all parents who love their children and want to do what is best for them. Thank you for helping affirm some of what I believe but more importantly reshaping my frame of thought in others areas. Your writing will make me a better parent and for that I am grateful. Thank you.

  26. I think that what was once the “Lovaas” method has now evolved under the ABA umbrella, but that there are MANY models flying under that umbrella, including the so-called “Denver Model ABA” that my children receive. Which looks NOTHING like what the author is describing.
    I think the important take-away is #1. KNOW what is happening in therapy. Make sure that your child is being respected as the amazing individual they are, not being forced into a mold. #2 Know your child. If you child is having FUN in therapy, that’s a pretty good sign. If your child is growing, learning new coping skills, etc., that’s a good sign. If your child is screaming and crying — run for the hills.

  27. Reblogged this on Melissa Fields, Autist and commented:
    I reblogged this via Sparrow’s Unstrange Mind blog, but am blogging this again, because this is why i am against ABA all the way. I never had ABA as a child, at school, but most of my family did not accept me and did all they could to squelch me as a result. I grew up knowing from an early age that according to my family, i was wrong, damaged goods, not acceptable unless i acted a certain way….like..normal……and the damage that did to my whole well-being, sense of self, my whole personhood. Parents, please read this. Parents who hate your children because they are Autistic, read this. It will break your child to know you don’t love and accept them. Most of my family still ignore me today, and do not understand why i chose to tel my life story online. They think i did it to slam them. I did not. I did it because i needed to. I did it because of all of my friends in the Autistic community. To make people aware of our plight, our issues. That the abuse and hate and the ABA-ing of us needs to stop.

  28. I carefully read your post and I am sorry you had a traumatic childhood and you feel that your ABA therapy was abusive. As a parent of a child with autism (actually 2) , I have witnessed massive improvements in my child’s ability to “handle” social situations due to the ABA therapy he has received (through a BCBA-D). We are under no illusions that the goal of the therapy at times only provides him the tools or basis for how to better fit in social situations. Life is filled with difficult social situations and everyone could potentially benefit from coaching to learn techniques to maximize these situations. We have had several therapists in my child’s life over the years and some were better than others in their ability to help him.

    As a side note, whether dealing with autism or neurotypicals- it takes a certain amount of understanding before finally finding a recipe that teaches us the tough lessons we need to learn in order to function in life. Many of these lessons were straight ahead behavior modification techniques which when implemented prevented many stressful events from ever occurring.

    I know I’m comparing apple to oranges here, but the idea that any one label of therapy, “ABA” should cause you to “run screaming” is not that helpful. As parents of children with autism it is our responsibility to diligently monitor the effectiveness of any therapy and make adjustments when necessary. Nothing stays the same for very long and as soon as the therapy stops helping it’s time to move on regardless of what insurance code its billed under.

    Two of our 4 children have autism. As a family, we are ALL impacted by autism. The bottom line is that the experience you had growing up has significantly changed with regards to ABA therapy as well as our knowledge base of autism in general. If you have met one person with autism…..you have met ONE person with autism- it is a spectrum disorder. I urge all the readers & commenters to this article to look for answers & solutions that work for you or your child- not anecdotal information about someone else’s experience- everyone is on their own success journey.

  29. Pingback: Autism therapy: all children are unique, even those with Autism | lovin' adoptin'

  30. One of the primary goals of ABA is to teach children how to communicate their needs in ways that anyone can understand (whether that’s vocally, through picture exchanges, or with speech generating devices). When children can’t effectively communicate their needs they are left trying to get what they need through any means necessary. That often includes escalating behaviors like screaming, crying, aggression towards themselves or others, etc. Is it more abusive to provide these children with therapy that can teach them how to communicate what they want and need (which is one of the main things that ABA therapy does) or to make them continue to rely on usin whatever ways they can find to eventually get someone to understand them?

    • Gemma, That’s the way *good* ABA works, and it’s very valuable when it does work that way. But we have found (and I’m speaking from personal experience with a large number of different providers) that it’s often not the case, and precisely that difference is what I hope to sensitize parents to.

      We have had numerous situations in which there was no goal other than the extinction of a “maladaptive” behavior. No “appropriate” replacement, no seeking nor apparent interest in what the behaviour was being used to communicate, simply extinction. The “behaviours” in question? Decontextual laughter, squealing, humming and the like.

      Thanks in large part to the bravery of people like Sparrow who are willing to tell their stories, we now know the difference. We work ONLY with those who do exactly as you describe and do so without holding the things she loves ransom or having her work for a piece of food (both of which we have also experienced in abundance).

      But until we knew better, we accepted the former. And that breaks my heart. So I’m very grateful to know better.

      • So then it is very important to discriminate in your post—to make clear that you are talking about *bad* ABA — not ABA as a science, not ABA as it is generally practiced, just the *bad* ABA that you have experienced. Your post doesn’t talk about *good* ABA, the *science* or ABA or the massive usefulness of the field. *Good* ABA doesn’t do anything like what you described. I’m sorry that it’s what you experienced but it’s unlike having a cruel kindergarten teacher — most kindergarten teachers are great. Don’t define the majority by the small bit you’ve experienced.

      • Jen, a) these experiences are far, far more common than most of us would like to acknowledge (just read almost any adult autistic activist’s blog) and b) I think sparrow makes it excessively clear that she is not throwing the baby out with the bath water here but emphatically urging caution. We have experienced some of the things she’s described here and, thanks to the guidance of those who have been through it, been able to either guide our therapists in the right direction or guide ourselves toward different therapists. But I hear these stories day after day. It’s still happening, and it’s happening a lot. Creating wise and cautious consumers among parents is, I think, not just smart but vital.

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