On May 30, 2021, I brought together a neurodiverse group of people to talk about Applied Behavior Analysis, also known as ABA, and its effects on autistic people and their families. The purpose of this webinar is to provide education from autistic, neurodivergent, and neurotypical people that all have unique experiences with Applied Behavior Analysis. Everyone’s perspectives are anti-ABA to varying degrees.
This webinar assumes you already know what Applied Behavior Analysis is.
Our panel includes autistic people, parents of autistic children that were in Applied Behavior Analysis, and professionals that work with autistic children, including a Speech Language Pathologist (SLP) that practiced ABA treatment on autistic children. ABA is a challenging topic. If you are easily triggered by this topic due to trauma, I encourage you skip; thank you for taking care of yourself. If you are the parent or caregiver of an autistic child, have an autistic person in your life, or simply want to understand more about autism and autistic people, I hope you’ll sit with us for this hour-long discussion to work through these uncomfortable feelings.
Speakers
Tessa Watkins (they/she), Autistic
Tessa is autistic, diagnosed later in life, and is also the parent of a toddler (neurotype not yet determined). They live with anxiety, depression, and C-PTSD. They chose to host this webinar because social justice and advocacy has become a new special interest and while not having the formal ABA experience, Tessa wanted to learn more about the controversy surrounding the claim, “ABA is abuse” and the common defenses that parents and medical professionals use.
Olex (they/them), Autistic
Olex is autistic, a parent of an autistic child, and a former social worker that connected parents of autistic and neurodivergent children to resources.
Sam (she/her), Autistic
Sam is autistic, a parent of three (3) autistic children and the two youngest underwent ABA treatment starting at 18 months old. The older of the two attended for years before being pulled out while the younger one only went for 6 months.
Shauna (she/her), Neurodivergent
Shauna is not autistic; she is the parent of an autistic child who was recently pulled out of ABA treatment.
Lauren (she/her), Neurotypical
Lauren is not autistic; she is a professional Speech Language Pathologist (SLP) and she currently works with children in early intervention (ages 0-3 years), including autistic children. Lauren was briefly an ABA therapist, having trained under a licensed BCBA.
Webinar Questions
- How and why is ABA abuse against autistics?
- How can the claims “all ABA is abuse” and “but not all ABA is abuse” both be true?
- What is it like practicing ABA? How did you feel using ABA techniques on children?
- Shauna, what led you to deciding to pull your child out of ABA so soon after starting?
- Sam, what led you to pulling your children out of ABA after years of using it?
- Aren’t some of the ABA techniques just parenting? Why is it labeled abuse when a BCBA does it?
Video Transcript
Tessa: Welcome everyone! We are here to talk to you about Applied Behavior Analysis also known as ABA and its effects on autistic people and their families. This event is brought to you by One Bad Autistic, a Facebook group associated with the One Bad Mother fan group. The opinions expressed here ours are ours and ours alone and do not necessarily reflect the opinions of One Bad Autistic or One Bad Mother groups, the One Bad Mother podcast, the show’s hosts, or Maximum Fun. In this discussion we are centering autistics and neurodivergent voices. My name is Tessa I’m the host and I am autistic. I have not been through formal ABA as a child and one of my special interests is advocacy as I have strong feelings about justice so I brought these knowledgeable group of people neurodiverse people together to help us learn more on this controversial topic so let’s get introductions out of the way who are you and what is your relationship to autism? We’ll go with Olex first. You’re still muted.
Olex: Thank you, sorry. My name is Olex. I am also autistic I am a former social worker and I currently work with parents of autistic and neurodivergent children to help them figure out which resources they actually need and how to advocate for those resources.
Tessa: Thank you. And Shauna, you’re currently muted.
Shauna: Hi, I’m Shauna. My son is autistic and he went to ABA for a short while and now we have moved on to some other therapies that I will go into later.
Tessa: Sam?
Sam: I’m Sam and I am autistic. I have three autistic children, two of which
Tessa: and Lauren
Lauren: Hi my name is Lauren I am a Speech Language Pathologist. I currently work with the early intervention kiddos so that’s kids 0-3 and I have a lot of experience working with kids, autistic kids, and also working with ABA therapists and I used to be an ABA therapist for a short while a long long time ago.
Tessa: Thank you all. Right so the very first question. Autism advocates, you know, often say, “ABA is abuse” so I think the burning question everyone wants to know is, “how and why ABA is abuse?” so who wants to take that?
Sam: I could go a little bit. Part of the reasons why it’s not recommended is the fact that it is very results-based and isn’t really focused on the internal behavior of the children, the internal feelings of the children or the people who are in ABA. And it puts them through a lot of things regardless of their emotional state and pressures them to perform in a way that’s very uncomfortable for them and to ignore their own internal boundaries and feelings in order to accommodate others rather than being authentic to themselves.
Tessa: Okay so it’s like where, you know, ABA wants people to change, to kind of override their own internal judgment?
Sam: yes yes
Tessa: okay all right [autistic noises]
Shauna: I can add on like an example of that if you’d like. When I’m talking to people about that natural instinct, I think you know my natural instinct is to cry if something is upsetting to me and so if I’m talking to somebody who’s neurotypical I can say it’s like, what’s your natural instinct and if it’s to cry I can explain that. What ABA in my experience has shown is that they told my son it’s not okay to cry, you’re not allowed to cry, the world doesn’t accept you crying, and instead you have to do this. This is how you’re supposed to express your emotions and so that example when I phrased it to people, they understood a little bit. It made sense to them so that was just something I thought I’d share.
Tessa: It seems like there’s also that little bit of sexism going on where like men aren’t allowed to have their feelings so they want to push your kid to “act like a man.” So a common counter argument that we hear when people say, “ABA is abuse” one of the first ones is, “but not all ABA.” So Olex, I know you have an insightful perspective on this. Can you explain what that rebuttal means and how they can both be simultaneously true?
Olex: Sure. When we’re talking about ABA, we’re talking about what is typically offered to parents as services that their autistic child needs in order to survive and there are there are a couple of barriers that I find that parents that I’m working with come up against. The biggest one being access to culturally appropriate therapies for their kids. Autism, in and of itself, does not require any special therapies, however many autistic children benefit from speech therapy or occupational therapy and their parents also benefit from speech therapy and occupational therapy. Often access to those services outside of big ABA centers is incredibly difficult. Working parents have a difficult time accessing culturally appropriate services for their children because there, these services are offered during working hours. They can’t take the time off to go to appointments every week, so ABA steps in and says, “hey we get that, cool, we will take your kid for 40 hours a week and we will provide the daycare we’ll provide them with all of the services. Your insurance is going to pay for everything you don’t need to worry about the cost.” And a lot of times I find that single parents, working families, these are issues that they run into accessing services. Another thing, I’m currently working with a family who is living in a family shelter, is a single mom, she has eight children. Four of her children are autistic, two of them are higher needs, need a higher support than than her neurotypical children. She is required to work 40 hours a week and in order to keep her family housed, she is required to send them to the big ABA center in town. She doesn’t have a choice. If she stops going, they will take away her health insurance. They will take away her access to housing, access to food, and she runs a real risk of having her children removed from her custody. so when I say, “not all ABA,” I don’t really mean, “not all ABA”.
Tessa: My background’s in marketing so it sounds like we have facilities that are just an ABA facility and but they’re also offering services that are not ABA so when we say, “not all ABA,” it sounds like you’re talking about those particular services. But when you’re in a situation like some of your clients, they don’t have that opportunity to opt out of those actual harmful services.
Olex: Exactly and I know I’m also a parent of an autistic child. I know that looking for services um we were I want to say it was close to two years to find uh a speech therapist that we could work we are still looking for an occupational therapist so finding those services and accessing those services outside of a one-stop shop is a barrier as well
Tessa: Sam, you have something you wanted to add to that? Yeah, you’re muted.
Sam: I want to say that specific legislation states that insurance companies’ coverage for autistic people specifically states ABA, or it says ABA and other services, and so insurance corporations will only cover ABA. So it’s very hard to find other services that are covered by insurance.
Tessa: Yeah and then Shauna, I know you wanted to say something too.
Shauna: Yeah I was just going to say what it sounds like Olex, if I’m hearing correctly, is rather than it’s not, “not all ABA is bad,” it’s more not all circumstances allow for like other options so all not all situations. Maybe it’s because the therapy itself or the treatment of ABA is not changing right. It’s the circumstances of the people who have their child in ABA, if I’m understanding correctly, more than the ABA itself.
Olex: Yeah I would say that that’s that’s accurate. But I also find I am finding that, for example, the speech therapist that that I see with my child used to work in ABA and when you’re coming into the field too regardless of how you want to practice this is where you’re going to get your start. You’re going to be supervised. These are the jobs that are available and I find a lot, especially in speech therapy, a lot more practitioners breaking off and providing that more culturally competent service.
Tessa: Yeah so that’s a great segue, Olex, because I’m going to ask Lauren. Can you explain to us some like what is ABA from your perspective as someone who’s actually practiced it? You’ve been trained in it and you’ve told me that you see that it’s now abusive. So can you explain that to me from your perspective? like I want to hear all of this information!
Lauren: Of course. So ABA is a lot of things but a lot of people think about the discrete trials of ABA. So that’s where you’re sitting at a table and there’s reinforcement and consequence. If you do what the instructor wants, then you get a reinforcement, and if you don’t, you’re told to try again and keep working for that reinforcement. Discrete trials have a certain number of objectives that the child needs to do. It’s entirely adult-led. If there’s something else that the child desires or needs that the child has, newer aba is trying to accommodate those but typically in discrete trial it’s going to be, “let’s sit down and drill and practice and then and then take a break.” ABA can also be on the floor. Early Start Denver Model. I think in an attempt to to make it appear more like floor time or other ABA or other autism treatments out there they um make it seem more child-led, more play-based. However it still is working all of it, all of the ABA branches. There’s a ton of ABA branches that look different than what some people think of as ABA but it’s all from the same mindset of reinforcement and consequence and the ABC: Antecedent, Behavior, and Consequence. Meaning that something happens, the child does a behavior like throwing something or not listening to you or not looking at you, there’s a reason for that. So that’s the energy, what I just said was the behavior, and then afterwards it’s a consequence. So that’s what the teacher does. Do they say, “no try again”? Do they say, “quiet hands”? Do they say, “look up at me I’ll give you an M&M”? So even if it’s on the floor and it seems child-based, and it seems like it’s fun, it’s still coming from this mindset of instructional control, which essentially means coercion. You’re coercing a child to do what you want them to do without really thinking about the child’s needs, without thinking about what the child has to gain. It’s really important to think about the “why bother.” What’s the “why bother” for the child? What’s in it for them long term? What’s their motivation? And in ABA, I think to summarize it, they focus on reinforcement over internal motivation.
Tessa: I recently attended a Disability and Mental Health summit and there was some practitioners that had explained like well you know if our kid is looking out the window and we want them to pay attention we’re just going to move their seat and I had asked as a comment, “why is it bad to move them away? Why is looking out the window a bad thing?” and they weren’t able to give me an answer. So is there I guess my question is like when we have parents bringing their kids to these therapies or these services, I’m going to call them businesses because it’s like a billion dollar industry here. It is huge, there’s a lot of money to be had to be a BCBA. So I started losing my thoughts I went off on a tangent there… um gosh… What was I literally saying like two seconds ago?
Lauren: the window?
Shauna: a lot of money a lot of money to be made at the billion dollar industry?
Tessa: I had a really good question and now I forget!
Lauren: to explain to parents who…?
Tessa: I guess the question is, the client for these businesses, it’s not the child. The client, and again from my marketing background, the client is the parent. So I imagine the business is probably saying, “so how do you want to design your child today? What behaviors do you want your to see improved? Do you want your kid looking out the window? No? We can stop that! Do you want your kid to give you eye contact? We can give you that too! Design a child here!” because I think that was even in, that’s bringing me back to another roundabout tangent, what was it… Ole [ __ ] his name? Ivar Løovas. I think he even, when he was when he was founding ABA, he has this ridiculous quote about you don’t have a person, you’re building a person, and that’s kind of what it is. If you have an autistic child, you take you know and oh my gosh. Okay I’m going too much on tangent. Too much talking from the moderator. All right. Sam, I see you have your hand up, did you have anything you wanted to add? It’s okay if we go back in time because time is irrelevant to me.
Sam: Yeah I wanted to say that like even in places where they have like a set list or once your child has mastered this, it’s time to move on to this, which is what happened in our case for sure. It didn’t take into account the child’s specific needs, like specifically my child who was in ABA the longest also has an intellectual disability but in preschool they were spending several hours a day working on say like sight word flash cards, which is not something that was age-appropriate, and especially not developmentally appropriate for him, but it was the next thing on their list to work on, and so it just there was like this driving thing to move on forward. And oh we finished this task what can we do next to fix it
Tessa: Your child’s the product of their business. Parents are the client.
Lauren: and I really liked what you brought up Sam where it’s it’s the next thing on the list it’s following a pre-designed program and you’re crossing it off the list um so back when I, so I was an ABA therapist when I was in undergrad and graduate school and as Olex brought up it’s it is common for speech therapists to go into that route if we have an interest and a desire to help autistic children it’s something you can get into while you’re in school um and when I was an ABA therapist I was under the leadership of a BCBA who essentially said, “Lauren, you’re going to do XYZ exactly like this” and if I didn’t do it exactly as the BCBA wanted, I was criticized um so I remember we were working on you know field of three you know choose one and I kind of was like you know what like I bet I could teach this in a more fun way instead of just testing because really ABA discrete trial is literally testing testing and it’s not actually teaching um I was like let’s just let me show them and let me talk about it and let me expand on it and I remember the BCBA observed me and she’s like, “Lauren you’re doing it wrong you have to do it like, this this is the right way,” and in a way I was also getting ABA therapy like that right and that wrong constantly being told to you which is another reason why I realized how upsetting and damaging it is to be always told that’s right that’s wrong black or white this is the way to do it when really every child is unique and different and they shouldn’t just be following one manual
Tessa: yeah yeah and I think I’ve even read on some of these websites they’ll say like yeah well it will personalize and individualize your plan but it’s really just you know it’s kind of what we advocate when we say you know where are you on the spectrum you know there is no point you’re more like that equalizer for audio so it’s like you know where’s your strengths and your weaknesses if you’re if you’re weak in eye contact and and talking to people then those are the services that that you’ll get so that’s the personalization but otherwise how they go about teaching them to you it sounds like it’s it’s already pre-planned I can’t say the word skip it you’ll never hear it from me. Okay so Shauna, I want to hear from you. So some parents praise ABA for teaching their kid how to talk or teaching them how to use their body but both of those things can be done without ABA. I think we’ve covered that pretty in depth and those things can be covered by going to someone like Lauren or Olex, speech language [autistic stuttering] Speech Language Pathologist. It’s now stubbornness. I need to be able to say these words. Or an occupational therapist. Shauna, since you recently pulled your child from ABA can you tell us what led to that decision?
Shauna: yes it was a few things I made sure to keep my notes. But it was from the beginning it was a little bit tricky because I actually was, I had moved across the country and so I was new somewhere and I got my son into a preschool and he just turned two-ish at that time and he was doing really well in preschool. And the reason I even sought out any sort of therapy for him which now I will call it “ABA treatment,” it’s not therapy, I don’t refer to it as therapy, but at the time I was seeking out ABA treatment because he banged his head a lot so he would bang his head for up to five hours a night and it was, not only was he not sleeping he was hurting himself and he didn’t have good places to bang his head. And for me, I’ve never seen that before and so to me it was like this is a problem and my kid’s not sleeping and so ABA told me like, “yeah we’ll fix that for you it will get him to stop headbanging” and um to me it sounded great I was like awesome because it’s not good for him to be doing this so if you can if you can fix that which I wouldn’t use that term now but at the time that was like what I was saying would be awesome and um I don’t know it just kind of over over time that there was like some hesitation and I started working with occupational therapists and then I had a speech therapist as well and I was getting conflicting information from so speech occupational and the pediatrician would all tell me one thing and then I would go to the BCBA and she would tell me another face, the BCBA is on the ABA side and she would tell me something else and then I would say, “but all these people say this” and then she would kind of backtrack and say “oh yeah” that’s you know and and so it led to a kind of like a mistrust for me where I was thinking if you’re going to flip like that then I maybe shouldn’t trust what you’re like saying to me. So there were there were a few things but one of them they wanted me to pull him from preschool so that he could do ABA which everyone else in his life was saying, “no if he’s if he’s thriving at preschool please let him be around other kids if he can handle it,” and he could and it was doing like he loved it he loves preschool so um there were those things and then you know OT, or no, ABA wanted me to completely stop his stimming which is what I found out it was but didn’t know at the time, my OT educated me on what stimming was and that it was just for his self self-regulation and there were safe ways for him to do it and so she said go get a rocking chair and in his room set up a pad so at night he’s banging again something soft so it goes back to that question that you guys were saying earlier like why which now I question everything like if a teacher or an adult or anything says he needs to be sitting while he eats or anything like that I say why? why can’t you wander to the window? why can’t he move around a little bit? what’s the harm? and that is really what I did not with the with the BCBA when I was when I was in aba and so there was no education there it was just here we’ll fix all the problems of your child and like you guys as you all spoke about before you were saying that um there’s always something more so there was always like new goals and I didn’t even ask you for this I just wanted him to stop hurting himself but then ABA always had new goals so um yeah there were there were just things over time and when OT was telling me basically exactly what he needed and how he can help him get what he needs so that he is able to rock because that’s what she told me to be a vestibular need, input need so his body moving back and forth it wasn’t even about the head banging. Then it allowed me to give him a swing where he could move his body back and forth in a rocking chair and like things that helped you know and give him the space to do what he needed to do um and then my yeah my trust was just lost with ABA with the misinformation and not educating me and and then the autistic communicate, or community, educating me and giving me an incredible articles and then I don’t know. when you learn too much it’s like then there’s no way I would go back like there’s no way I could go back to ABA at this point so yeah
Tessa: yeah I feel like you know because you’ve told me that story before about with the rocking chair and you know that got me thinking the other day like when I was just I was really upset because there was like this loud construction noise and I’m just like I can’t focus I can’t focus I was just getting I felt like I had a lot of energy and like I couldn’t dissipate it and I’m thinking like what what about rocking you know I have a recliner in my toddler’s chair you know she mentioned the rocking I’m like let me just go try that maybe there’s something to this so I went and I went I just rocked in the chair like this is amazing so like even if you’re not autistic and you’re pissed off go with a rocking chair and calm down because there’s a reason yeah. There’s a reason they exist right people like the feelings so okay, so Sam, did you want to tell us your story or do you have something to add to here?
Sam: yeah I wanted to add that um ABA doesn’t really focus on meeting the needs of the child like if the child was like your child was banging and you can meet that need in an appropriate way by giving them an appropriate a less harmful way by giving them an outlet to be able to meet that need like that would serve the purpose better than just pretending like that need doesn’t exist and trying to get them to like mask or cover up the fact that they have needs that they are not being met
Tessa: yeah and I think to your point, I’ve even read on some of these websites they’re like, “we’ll make your kid indistinguishable from their peers” and it’s like why?
Shauna: yes actually I had somebody tell me that that was part of the marketing of it not from the company but from a parent who had put their child through said um he was first diagnosed at two years old and he’s six now and if he were to get evaluated again he wouldn’t even be diagnosed and it was like a big excitement thing and now I look back at that that with a different lens for sure I look back at that interaction through a different lens
Tessa: So Sam this is question is for you. I know you have three kids but the two youngest ones were in aba and they both started when they were 18 months old is that right? um and then the and the older one was in it for years well your youngest one was only in it for six months yeah so my question to you is you know what changed? you know why did you decide to pull your children out of ABA after all that time?
[If you’ve read this far, I’m still working on formatting the rest of this transcription. As you can imagine, it’s a big job, I’m autistic, and lost the motivation to finish but I still want this article to be published. Please afford me that grace and be patient. Thank you!]
um it became like in the beginning my oldest son is autistic but he was born in 2003 and we had the hardest time getting any kind of services for him because it was all I can see where he was struggling and they’d say no it was fine you know kids it happens to it all the time so when my second son also had some really um significant developmental delays I went to early intervention and I was surprised that they actually said yes of course we can get you services and I was like yes finally someone is listening to me and they can see that my child is struggling
and so we entered the program and it was right as my third child was born so I was in the newborn forest and um I was just waking up and taking care of my baby and cleaning the house because we did in-home ABA where we had strangers in our home for um eight hours a day, five days a week and so like I was just lost and then let’s just get it done let’s get it done then it took me a while for my oldest son to realize because at the time
he um he had no communications, he couldn’t point, and I was so scared at the implications that he would like if something was wrong that he would never be able to tell us that something was wrong
and these people were offering us help and they were offering us more help than I thought that we’d be able to get and so we went forward with that and then was I was starting to emerge from the fog of the every day of you know constantly taking care of like a high needs child and moving forward um I started like noticing that like it was really stressful on him like some days like we’d be done with ABA and he would just like fall asleep on any kind of flat surface that was nearby because it was just exhausting he was just you know three years old and he was just running through flash cards or he was constantly going through things and I remember I was taking videos at the time because like he was making so much progress and I didn’t see his distress and looking back I can obviously see his distress where he would do what he was told and they’d reward him with like 30 seconds of a TV show that he liked and then like they would block it and take it away and like he never got to just do the things that made him happy or do the things that made him relax and as we completed one goal and then the next like it was there was always another goal there was always something that we were pushing towards and trying to do and it was just too much and um with my third child she was at the same level that her brother was at about 18 months where she wasn’t speaking and she wasn’t pointing and she would actually um be considered a success in ABA because she did ABA for about six months and she was speaking in sentences
by the end of it but I don’t feel like it was because of ABA, I feel like that was just her developmental milestone like she doesn’t like to try something unless she feels like she’s mastered it because that’s just how she is so when she started talking you know you’ve heard all these stories of these famous people who are like oh Einstein didn’t talk till he was three and then suddenly he was talking in sentences and I feel like she would have just been the same way, she would have developed in her own time and we didn’t have to put her through that and um like especially when they started in on the um the flash cards with my older son with the sight words and they were just like they said like he knew like 120 sight words and he could do the things but then when he went to school he couldn’t because it was only specifically in that program and like he was being
like he knew how to perform for them but he didn’t internalize anything and it was just all just trying to get them to stop so that he can have his rest so that he can have his five minutes of peace at the end of his session or his break and it was it was heartbreaking and I
it just it was too much and we had to stop
Tessa: I think you you you know you explained that really well it’s the results of ABA is performative you know they’re not actually learning those skills you know they’re not what when people you know I know eye contact is one of the most common things you know so when we say like you know making eye contact you know it’s why is that why does that matter um gosh I had a thought left again… um yeah [ __ ] I’m so sorry about like that that wasn’t distressing you know and like and to have that that weight come on you at the end because like like you said you didn’t see it in the time and it’s and I imagine a lot of parents are feeling this you know when they come to autistic communities after being in their “autism mom” communities you know they’re probably like, “oh my gosh I’m an abuser. I can’t be an abuser!” it’s a hard it’s a hard thing to come to terms with you know to to feel like you’ve done your kid dirty so to speak you know it’s… especially if you know because it’s also as that Olex pointed out it’s it’s privilege to be able to take your kid out of ABA you know it’s privileged to get your kid in ABA it’s messed up this is what it is I don’t know how to sum that up any easier. oh crap all right so I’m gonna make everybody feel like crap with this last question this is um so this last question um I want to answer myself uh to begin with um you know without going into detail you know I suffer from complex PTSD, a result from childhood trauma.
um child abuse can take the form of neglect, physical abuse, sexual abuse, psychological abuse, and medical neglect um so the question that I’m going to answer is, “aren’t some of the ABA techniques just parenting? Why is it labeled abuse when a BCBA does it?”
and it’s hard it’s I want to say like it’s hard for me to answer this because
I love my mom, I love my family, and I don’t want to say “my family’s abusers” because
I have to say it with a little funny laugh otherwise it’s real um you know it’s the thing is it’s it it is parenting if your parents um
gosh I was actually up at 2:30 in the morning and I wrote all this down because I just couldn’t sleep the night before um so I wanted to kind of kind of relate this to the spoon theory
the spoon theory was a way that someone I forget her name but she she used it to explain like using your mental energy um throughout the day that people, that disabled people have to um think ahead, plan ahead, otherwise they might not be able to do everything they want to do in that day because it’s hard to just stand up in the shower if you have a disability that affects fatigue and being able to stand up and I wanted to extrapolate that and say like a lot like the spoon theory can apply to most any marginalized person because they’re spending day in and day out living in a world that does invalidate them so that takes up a lot of spoons to constantly be correcting people if they pronounce your name wrong to constantly you know fighting discrimination um you know the the the way your body looks um the way you actually behave there’s there’s so many things that that students have so when you are a parent and you are low on spoons you tend to make the choices that will take less spoons and if you’re driving home at the end of the day and your kids screaming in the back of the car, the easy path if you don’t want to say yes, if you don’t want to “indulge them” in whatever it is they’re asking for, the easy thing to do is to ignore them
and ignoring them once because you’re low on spoons if it’s like a one-time situation that’s okay we’ve all we’ve all been ignored before we know how it feels it’s kind of crappy um but when you get ignored every single day and this is an ABA technique called Attention Extinction where they actually um instruct you as the parent to do planned ignoring of your child when they’re behaving in a way that you don’t want them to do when you get ignored every single day you start to feel unheard, unseen, and maybe even unloved
you know these these are specific examples that um in this child welfare government document said withholding attention was an example of emotional maltreatment and part of that is you know you you can experience all of these things like one time ignoring somebody probably isn’t going to cause them emotional long-term damage but it’s the repetitiveness of it that will cause that emotional long-term damage and that’s what it was for me you know my I didn’t go through formal ABA because my mom she didn’t know what ABA was like my family they didn’t know what he was there you know we we were not privileged you know we grew up um below the poverty level she’s a single mom I don’t know where my dad is you know it was it’s there was a lot of emotional trauma throughout my childhood and it’s something that I’ve been coming to terms with in my own counseling um in my own therapies and it’s something that I feel slightly more comfortable talking about um I’m at least you know
I don’t know where I land with that but the point is that you know when we say you know aren’t these techniques just parenting they are…
are they?
you know i guess that’s the question I’m asking like you know it’s like is this the tool in your tool box that that you want to go and reach for every time or is it just something you use one on on occasion
yeah yeah um for a while I saw ABA as a kind of a necessary evil whereas say your child if you thought your child wasn’t drinking eight eight ounce glasses of water every day and you decided to forcibly give them an IV that would obviously be abuse like obviously but if your child was in a state where they were dehydrated and they were unable to drink it would not be abuse because it would be medical attention but I’ve the line is with ABA and behavioral interventions like I wanted him be able to communicate even if he could like my son even if he couldn’t talk I wanted him to be able to point and to be able to answer yes or no if I asked him if he was hurt and that seemed like an emergency to me and it required emergency intervention but then over time he did learn to communicate and the level of intervention didn’t decrease it just kept on and it was still in that state of emergency and intensive
intervention that wasn’t appropriate for the level that he was functioning at and then it became less about being able to function and more about being able to blend in or to more just fit in the square peg of a kindergarten classroom rather than meeting his needs and doing what was best for him
yeah everybody deserves a right to communication you know we shouldn’t have this ridiculous ableist you know focus on mouth words
you know if your kid can’t speak, we we used baby ASL for my for my daughter and you know she was able to sign back to us at nine months old and I was I was taken aback I’m thinking like nine-year-olds are, not nine-year-olds, nine-month-olds clearly don’t know what they want you know they can’t talk I’ve never heard of babies being able to tell me things before and here she is she’s like I want some milk give me some more you know I’m just like damn girl you know how to you know what you want at nine months old you have opinions on things that early on you know this is what we mean by you know “presume competence” because they know they just can’t say it you know and she was pre-verbal there’s you know plenty of other kids out there that you know speak fluently with um with devices, ASL you know I do um these video chats weekly with other groups of OBM and I’m just, one of our members they have a kid who uses this device and I’m just like I’ve never seen that before like this is diversity for me, just normalizing it for me to just see this kid exist with their device and able to have communications like and like this kid doesn’t say a word out of their mouth but they have this device that is very very fluent and the parent like they’re just so wonderfully responsive to this and I’m like wow like they really know what they’re doing over here they they’ve got they figured it out they figured out what helps their kid communicate and we need more of that we need more parents like that OBM right there
you know who you are
and if it’s okay for me to chime in as well so like that line between is this normal parenting or is it can it be abusive you know that line I think for me if something’s icing on the cake you know then then it’s okay so like with potty training most people I know use some sort of reinforcement for potty training they’ll say oh if you go on the potty I’ll give you a special treat or we’ll go get ice cream or something you know and the thing is though that kid has to already be mentally motivated to go on the potty they have to be interested, curious what’s this all about they have to be successful at least a few times they have to not be afraid of it they have to be warmed up to the idea
but they’re just kind of like yeah I mean if it’s all the same I guess I’d rather just play on the floor and not and just go in my diaper oh I’m gonna get a treat well then sure that sounds great you know so they’ve already met they’re already there they’re already that’s just sweetening the deal and sometimes we do that for ourselves like ugh I don’t want to have to stay up till 10 p.m. finishing my day job stuff but you know what sometimes I treat myself and I’ll say you know after after I’m done I’m gonna have a glass of wine and it’ll be nice and but I already motivated there’s already a why bother
what what’s really damaging is when the only reason a child is doing something is for the reinforcement um like saying your story was really enlightening it’s something that I’ve seen a lot as well with the flashcards with just trying to get those five minutes um of just trying to get that break so they’re just going through it just for the break and just because they’re trying to avoid it there’s no they’re not it’s not sweetening the deal they’re not at all there they’re only doing it the only only only reason is the reinforcement so I sometimes I try to explain that to people that that’s that’s kind of that fine line difference
I um I have two examples that I just had to quickly write down because I um you know I think it was oh gosh I don’t know how long ago, I don’t have a sense of time so I could say last week is the same as two months ago I don’t know I’m gonna go with two months ago because that seems reasonably far away
um so two months ago um I did something that I thought that I felt like I should be I felt bad for. like I think it was just that I went
grocery shopping oh you know it it was for Easter because I remember the whole reason why okay so I it was around Easter time and I thought I should get a chocolate bunny because that was something that we liked to get and I just looked at the bunny I’m like let’s get this bunny it’s it’s the last one on the shelf why not. I bought the bunny came home turns out it was a really expensive bunny I didn’t, like the price of it didn’t cross my mind and I’m like ugh so like that’s pretty normal for me I tend to like get too focused on something that I don’t look at other things so like the whole time I was shopping [autistic noise]
so anyway um I come home with this bunny and my partner he’s just like that is a lot more than I would have spent on a bunny and I just was like oh and something something happened in my mind where I needed to punish myself and a lot of that was that I just didn’t eat um the next day basically I withheld food because I’m just like I was so depressed that I’m just like
I don’t deserve food
I deserve to feel the pain of hunger
because that was one thing I could control and it was just
you know and I’m 30 years old, like why am I doing this to myself?
you know that’s what PTSD does, it manifests in ways like this because of things that happened probably when I was a child that I was punished you know I more than one time I had to go to bed without eating dinner because I didn’t like it you know I was considered a picky eater turns out it’s probably actually AFRID because I cried at the smell of fish but that’s another story for another time but like you know these things stick with you though that’s what adults told me was appropriate to happen when I did something wrong and now as an adult like I punish myself
like I didn’t consent to that really I don’t want to be but who wants to be punished like that’s it’s messed up like that’s um and then the other example literally just week
uh just week
just last week
um I was meeting somebody for an important meeting and they sent me directions and it was like you know let’s go to 123 example drive and I pull it up on my Google Maps and I’m like okay this is in a shopping district I don’t think the person lives here and I thought
well maybe I should go there anyway why why would I question their directions?
they’re the person who knows where it’s at, I need to trust them
I need to assume, I defer to them I assume that they’re correct
so I went ahead and I you know I thought maybe there was an apartment building I wasn’t aware of you know I was vaguely familiar with this area um so I went there ended up in a church parking lot they’re definitely not here um that was not where the meeting was so I ended up texting like oh it’s you know like oh my god it was you know example road not drive I’m like okay well I mean that’s at least residential went there 20 minutes late to a meeting you know whatever that. fortunately they’re really reasonable
but the point is that I had that gut feeling that said maybe this isn’t right
and I’ve been taught that my gut feelings don’t matter
that I need to trust implicitly other people
because I’m the dumbest person in the room
so um I guess that ends that sentence
um yeah so if there’s any last comments um I think I just we can wrap that up that was all the questions that I had uh what do you got for me?
I was just going to answer the last question um I don’t think I have a good answer for it really but I can say that my son is my first child and he’s not even three and so when it comes to is an ABA just parenting it’s hard for me to really answer because I feel like I’m still a new parent and um and maybe it is just parenting for some people but there are also a lot of things a lot of parenting styles or choices that I wouldn’t make and I refuse to make and so there’s it’s hard to say um just because we all make our own choices and we all have our own comfort zone but what I will say is if I flip that a little bit what it’s done to me to look at the way that I’m raising my son through the lens of being anti-ABA for myself and for my son I’m really I’m really using why all the time so I’m really you know if somebody suggests that he doesn’t have boundaries I have to I sit there and I think about it and I’m like when did I learn boundaries like what at what age I actually learned boundaries and the answer was probably when I was an adult probably not when I was two years old probably not when I was two and a half years old so like my expectations of him are what society has it imposed on me or I’ve taken from society and then I start to think like what like you need to have an understanding of why you’re why a boundary is in place in order to comply with it um otherwise it’s just it’s just doing it for because you don’t want the reaction if it’s negative right so I’m just challenging a lot the things I’m doing as a parent because I’ve learned through other parents or through society that’s how you do it and I’m challenging it in my head and saying maybe it’s not the right way maybe this is not what’s going to work for my son and so having that experience with ABA and feeling just such a visceral reaction to the the things that I felt were really negative for him um have just allowed me to look through a different lens
I think my parenting style in general which is um not like no it’s not ABA like it’s very different than ABA um but I also like what you said Lauren where it’s when all when everything else is met and that’s just you know the reward is the icing on the cake um or if I just don’t have any spoons left which happens and I’m like I know the only way you’re going to let me choose to change your diaper is if you’re also eating a cracker at the same time and like and I can’t I’m full for the day like I need you to change your diaper I need to change your diaper really of course there are those times um but principally and like you know on a regular basis I try not to practice those things
yeah it’s so hard being a parent you know we all have these preconceived notions of what we’re gonna do when we’re parents and… [shrug]
I don’t have a follow-up to that
I think we were all um excellent parents before we had kids
something that all of you have kind of touched on in talking about um ABA techniques being just parenting if you spend time in autistic-led spaces especially when it comes to talking about autistic children something that you hear uh well there are a few but one of the things that stands out to me is you know um your child is not giving you a hard time your child is having a hard time um and that shift in thinking uh is completely glossed over in ABA um but that shift in thinking is what allows the in my opinion what allows the
quite come up with the goals is I think the closest word I can come up with the goals of ABA
it allows it to shift from abusive to affirming
um you know and again ABA just ignores the why are you having a hard time and focuses on
the stop giving your teacher a hard time
stop giving your parents a hard time
yeah yeah that one I know
um yeah because you often I say you this is me projecting, you often feel like you’re the burden on everybody else because you know that’s the language they’re using you are giving them a hard time sorry I’m giving you a hard time
and I over apologize I think before this meeting I apologized like 20 times for like every little thing I was doing and that’s just because it’s bred into me
my son who was you know in ABA the longest, he apologizes and he’s always he’s a lot more anxious than my other kids I mean he comes quite honestly and also a very anxious person but um he to the point we’re like let’s go get ice cream and he’s like do we have money for ice cream it’s like yes like mom and dad said yes like you don’t have to worry about it like
Tessa: he’s six and worried about money?
Sam: yeah, it’s like we’re going out, we’re having fun and we never talk about money in front of him or anything like that and we’re actually in a very comfortable place right now. But like he just like I don’t know like he finds like he has to overthink everything and make sure that everything is in place so that we can go and do this fun thing or so we can have this fun thing. Or like when we’ve been on vacation, my sister’s like, “I want this and I want this candy” and he was like, “I don’t know.” He says, “no I don’t want to spend your money” it’s like it’s your money buddy like go pick out what you want and like I don’t know like he’s always worried about um what everybody else is gonna feel or what the consequences are for like every bit of happiness or joy that he has and like I just like that’s the difference between the three kids and he was the one who was in it the longest and he just, it it wasn’t good you know?
Tessa: yeah yeah I mean it’s funny that one of the (I say funny) it’s funny one of those stereotypes is that you know autistic people are completely self-centered and so internal and completely oblivious to situational awareness yet it sounds like your son is hyper sensitive to everyone around him and hyper aware of his effect on people. I’m just gonna like sit in this silence because that’s sad that’s really sad. All right. Oh, well, I don’t want to cry so I think we’re done for today. I would love to invite you guys back another time and we can talk about alternatives to ABA. Now that we know that ABA sucks, and all ABA sucks, all that is actually ABA sucks, what can we do instead? So I think that these are some important questions. How can we actually help autistic children and autistic adults that have suffered from ABA whether formal, informal, it has an impact on not just the kid but it’s got the impact on our families, grandparents, friends. As I said, your kid is hyper aware of everybody they meet and is so concerned over everyone else’s feelings I mean that like I have that Rejection Sensitive Dysphoria (RSD), like I am so afraid of people hating me and saying the wrong thing, and because I can’t understand my, I don’t hear my tone, and I usually can’t pick up on other people’s tones, I’m so afraid that I’m going to offend someone on accident, let alone on purpose. So it’s just… just… all right, you guys are all doing a good job. Thank you
Shauna: you’re doing a good job Tessa thank you
