Shayna - I am an Autistic mother, of an Autistic child. I was originally not-wanting ABA, but early intervention signed us up for "parent training" I did not, at the time, know that was ABA. Once I figured that out, it was 'only' an hour a week, and I wanted to know EXACTLY what ABA was, so I didn't flat-out drop it, for about 3 months.
Learning about ABA made my skin crawl. The idea of having what was discribed done to me, or things like "it's totally humane, it's how you would train a horse or dog" that were meant to soothe me, just made me more weary.
My son immediately started having meltdowns when ABA techinques were used, and we were told those were "tantrums" and that even if we coddled him after 2 hours of crying, we would be "reinforcing" the bad behavior. After about 3 months, a little before that, my son stopped having meltdowns, and had stress tremors. I gave THAT 3 weeks, and then dropped ABA altogether. the stress tremors stopped as soon as ABA techniques were no longer used, even though we stayed with the same speech therapist, we just told her not to use ABA techniques
ROSE - Two of my experiences with ABA
They would set up a situation, for my son, that they knew would provoke a meltdown. It was done so that they could "help" him deal with the meltdown. It was meant to desensitize my son to his triggers. They called it making progress. I call it abuse.
They would also restrain him in a chair until his tasks were complete. Regardless if he understood what was being asked of him or if he needed a potty break or if he was afraid...this was of no importance to them.
ALL that counted was him doing what he was told.
It took over 3 years to undo the damage that was caused.
Shaquana -
I tried ABA for a couple of months for my son. It was a lot of training him to obey me completely and utterly. A lot of 'give him this treat but only if he does what you say'. My son was a WRECK the entire time. Anything he did learn, a big thing we were trying to do was potty training, was accompanied by a sense of ME winning, not him.
The rules were intense. The meltdowns were frequent and if they stopped at all it was out of exhaustion. He did NOT understand what was going on, only that he had to act a certain way or he wouldn't eat or play or anything. I felt like I had a drone, not a child.
It's cruel. It doesn't leave room for learning why or how to have your own thoughts and make your own decisions. I was not teaching him how to live in society, but how to shut up and not be seen. I hated it and I dropped it after a while. And he is awesome without it.
If you are trying to raise a robot, great. But when that robot gets older and is manipulated and can't understand when an adult, or any other authority figure, is out of line, that's an issue. The therapist was speechless when I asked, "Okay, if we teach him to do exactly as he's told no matter what, what happens if someone sexually assaults him? Or tries to kidnap him? Is there anything in this therapy that teaches him to say 'NO, I'm not comfortable with that' or even 'No, I don't like to do that, let's do this instead?'.
No personality. Nothing but assimilation and an assurance that you can get your kid to do 'normie' tricks and pretend to fit in better. It was disgusting. The training was NON-STOP and I was expected to continue when the therapist wasn't around.
No thanks.
Jessica -
I had one session with my kiddo very early on when she was first diagnosed. As the neurologist who diagnosed her said ABA was the therapy she needed alongside OT. We walked out. Continued with OT. And i educated mysef on what ABA was which helped me to understand why i walked out of that therapy with my kiddo.
Anon -
We did about 3 months the spring/summer of 2012. I was hugely pregnant with our twins and had three boys who were 3 1/2, 2 1/2, and 13 months old.
We had services through our Regional Center and they contract through Easter Seals. We had five therapists and one supervisor within that 12 week period. The first quit after a week to move out of state. The second I asked to leave after 2 sessions because she was causing then ignoring distress. The third was our longest tenure: 2 weeks before she was reassigned (we're at 4 weeks here).
The fourth and fifth came together as a pair, a supervisor and the therapist. I actually liked these women BUT after watching them for one week (four five-hour sessions) I told them I wasn't happy with how things were going. We continued "Parent Teaching" for the remainder of the two months.
It ended up being a mommy chat time for 5 hours three times a week because we hit it off as parent friends. My biggest issues were the intentional causing of distress to elicit a "problem" behavior the therapist could then work on correcting. The ignoring of distress was also extremely against my parenting style. They also talked about my boy as being manipulative and naughty.
Our school district employed a behaviorist who has her masters in child development and CBT. I absolutely adore her and how she see children. If there's ever something going on she always looks at how it's being delivered to the child(ren) as the issue as opposed to changing their behavior. Students get to take breaks in three safe spaces upon request (either verbal, icon, or signing) and distress is never ignored or intentionally brought on for the sake of "training."
Megan
Met with BCBA once. Thought I had explained what made me uncomfortable and what I was looking for (self advocacy skills basically). The therapist proceeded to prescribe that we force my daughter to say hi, every time someone said it to her, and to hold her there until she said it. We never went back.
Sheri
My daughter had one session that was awful. The therapist kept saying "I know it's hard but this is the best way."
Well. It never happened again. My daughter has never forgotten. I did some serious repenting with her more than once. It was downright traumatic.
Eilean
Funny thing.. my daughter had ABA for about 20 hours a week, now that she started wanting to go to school her ABA therapist told us that this is a horrible idea and that she couldn't receive as much ABA anymore and her development would stop or even lose speech.
I put her in school, she got her headphones, her necklace for the bus and she's the happiest kid. She's doing great in school, actually she's one of the best in class.
I got told ABA is the best thing to do when my kid first got diagnosed and I didn't know anyone who could educate on this. All I say is my daughter is so much happier now then she was few months back...
Samantha -
I have two Autistic children. My oldest had ABA for about 2 years (from 2.5 to 4.5). My youngest had it for 1.5 years (from 22 months to 3). When my eldest was diagnosed, it was made clear that ABA was THE therapy to do, was scientific, evidence based, and the best way to ensure positive long term outcomes. The first company that we worked worked with was owned by a woman who actually worked under Lovaas. I asked her how I would know WHY my son was exhibiting particular behaviors. She told me that it was impossible to read his mind and it didn’t matter why he was doing things. That we were just to respond to behavior. Well, it DOES matter to me why kiddo did what he was doing at the time. There were also times that they said we would have to provoke certain distressed reactions from him in order to train the behavior out. It just seemed cruel to me to intentionally upset him (at the time, there were pretty significant SIB like head banging—I was desperate for that to stop and couldn’t imagine trying to get him to do it on purpose).
Another therapist was awful to my son, physically restraining him when he was upset and sometimes just sitting there while he hurt himself. She made a whole point about how I shouldn’t “give in” to his fits. I ultimately threw her out of my house after she threatened to call CPS literally because of the way my furniture was arranged.
Anon -
When our child was diagnosed in 2008, the narrative around autism was very, very negative. It was the height of the Autism Speaks "doom and gloom" campaigning, some of which also went on here in Australia.
My husband & I were led to believe that autism was something to be "defeated," or at least "strongly mitigated," and that with dozens of hours of therapy each week, our child could reach the ultimate goal: "to be indistinguishable from their peers" (this exact phrase was used).
In fact, on the first day of our orientation at the early intervention centre so many people recommended to us, we were shown a video clip of an American boy who apparently "recovered" from being autistic after doing years of intense behavioural intervention.
In those early days, we didn't feel empowered to challenge drills that encouraged things like eye contact. We didn't have the benefit of learning from autistic young adults and autistic adults about just how painful it is to try to "pass" as not autistic and to be encouraged to quash things like non-harmful stims. We were told that when our child was crying or resistant to doing sessions (I know appreciate how exhausting 20+ hours of therapy must have been for a tiny child) that we needed to "work through" otherwise we would just be escalating the issues.
Tabitha -
It’s so much like dog training that my kind sweet 5 year old nonverbal son still won’t even take a bit of food without being prompted ( told it’s ok ) and we stopped almost a year ago .... he’s just so afraid to do anything he’s not suppose to , trying to get him to think for himself again is what I’ve. Been doing everyday since ! it’s heart breaking !!
Fadwa -
Yes we did ABA with my son for two years, I will regret that for ever, I should have known better since I was preparing a phd on invisible disability like ADHD, sensory disorder and austim, but the thing is ABA therapists prey on parents' fear "prepare to be fighting with an adult in shakles and diapers if you do not do this now, the window is closing, early intervention is key"" this was a response I got when trying once to reason with one of them by asking her "does not he have a say in it,." Once an SD is given there is no way for the child to refuse to comply even if it is so absurd like touch your nose. I seems happier after I fired all his ABA team.
Kim -
My child had an ABA-based program at his public school in a typical classroom, from the end of 2nd grade through half of 4th grade, when I pulled him out to homeschool. My family did not feel that we really had a choice about this intervention and I brought many of the concerns I had heard about ABA from autistic adults to our school team from the start. I was assured that this ABA program was "not strict" and was not the way ABA was done "in the 90's." This was the kinder, gentler ABA. I made sure my son was allowed to stim. I insisted that no one prompt eye contact. He was not pushed to act neurotypical. He would be taught "coping strategies" and be allowed to take breaks.
The first red flag was when our first BCBA wanted to implement a "quiet sit and be calm protocol" in response to my son bolting or having outbursts. He was supposed to sit quietly with his hands still for 30 seconds, and if he had "maladaptive behavior" before the 30 seconds were up, he would have to come back and start all over until he was compliant. It was clear to me that forcing a child to appear calm with no regard for a triggering environment or situation was abuse, and I vetoed it immediately.
The main focus of this ABA program was teaching my son "coping strategies" so that he would not run away from the classroom. In the entire time he was reinforced for requesting breaks instead of bolting, there was never an emphasis on learning WHY he was running away. When he continued to be stressed, it became clear to me that there was no way to determine whether his "coping strategies" actually helped him cope. His BCBA could only measure whether he utilized replacement behaviors and whether he was compliant. Using "coping strategies" was meaningless.
When my son started having meltdowns at school, I was initially unaware of what was going on, because his interventionists and our BCBA referred to the episodes as "noncompliance." When I asked our BCBA how she distinguished between autistic meltdowns and intentional noncompliance, she told me that ABA looked at differences "based on observable measures." The only difference between the two from her perspective was that my child typically cried and showed aggression during meltdowns but not during other instances that were considered noncompliance. There was no place in ABA for her to understand that meltdowns were an involuntary reaction to being overwhelmed, and therefore no way to treat them any differently than willful disobedience.
Despite my full-time advocacy, there was never a serious attempt to integrate an understanding of my child's internal experience into his plan. Teaching a child "coping strategies" instead of unsafe behaviors sounds great on the surface. But with a focus solely on external behavior, ABA has no tools to tell if a child actually feels safe and calm, or if they are just suppressing their fear or pain to be compliant. If a child's meltdowns are not understood as anything more than noncompliance, that child can't be supported appropriately. It was clear that my child was just being subjected to compliance training, and I pulled him out of school.
Anon
My 10 year old autistic son has been attending a district autism school. It has all the bells and whistles. It has everything you could have dreamed of. Including bikes in the hallways for the autistic children to ride up and down the halls. My 10 year old was doing so well there. Looking back there were red flags but I couldn’t put my finger on what was causing some behaviors. My 3 year old autistic son started in April. He was there for a month when my 10 year old told me what was going on because he thought he hurt his brother. Every day/twice a day they have the autistic children go to the nurse and they do body searches. My 3 year old wouldn’t comply so they brought his brother in to hold his hand and undress him. After that they used marshmallows (his favorite food) to force compliance. Every day autistic children are given reinforcers to take their clothes off. Every autistic child in the program. I found out because my 10 year old couldn’t tolerate watching his brother screech and cry. I was never notified or asked if this could be done to either boy. When I questioned I was told they didn’t need my permission. When I said that they were grooming my children for a predator, I was told that they didn’t care because it was policy. When I demanded to see the policy in writing, they said they didn’t have it in writing. When I demanded to see the daily logs that showed that there were 2 staff in the room during these searches, they didn’t have it. When I asked if they did this to “normal” children they became offended. I told them “we stopped being politically correct when you body searched my disabled children like they were carrying guns”.
If you’ve made it this far. I filed an institutional abuse report against the school. It’s still under investigation. I’ve asked for an out of district placement but the school is making me wait. I’ve asked for home instruction and I’ve been put on the back burner. I’ve implemented in home counseling to deal with any long term effects. I now have kids with lovely IEPs that are worth nothing because they aren’t in school. I continue to fight and argue with the school.
ABA techniques are used to abuse and manipulate children to comply. Compliance is abuse. Compliance causes abuse.
Samara
My son did ABA for 2 months and was traumatised, It took him 6 months to recover, and we still have a lot of harm to undo, and the worst is he doesn't trust me because I was the one taking him to therapy. He only comes to me or hugs me when I am in my pijamas, if I am dressed to go out he hates me, he gets scared I might take him somewhere he doesn't like.
KP
When our child was identified as an Autistic person, we were overwhelmed by the negative rhetoric from the “experts” around us. It made a situation that need not be, incredibly challenging.
We didn’t know of a single other Autistic person in our family (that changed over time), and at that point we were completely raw, vulnerable and absolute rookies, so we made a rookie mistake with terrible consequences; we followed the advice of the “experts” and enrolled our child in ABA “therapy”.
Our child was only 3 years old when the ABA started. There were challenges of course, though our child was a genuinely happy and very loved child. I’d always strongly believed in connected, responsive parenting and our relationship was hugely important to me. I enjoyed being with my child immensely.
As soon as the ABA started, we began to see a change in our child. Anxiety and unhappiness became increasingly common and ultimately, meltdowns which descended into aggressive behaviours and striking out. I knew things couldn’t continue, I was losing my relationship with my child.
I didn’t know it then but this process in common when kids start ABA; we were told that it was just our child trying to avoid compliance and that aggression was a normal part of extinction outbursts. I was horrified and began insisting that I witness for myself what was happening to our child (this was strongly discouraged).
These are some of the things I saw:
Our child being physically turned to look at and speak to any adult who spoke to them (even though verbal speech had not yet developed - a noise was taken as verbalisation)
Forced and sustained eye contact
Our child being “pinned” in their seat by placing the table into a corner, with our child sitting against the wall with the “therapist” sitting at a right angle, effectively blocking the exit.
Affection, food, drink and use of toilet being refused until “compliance” was achieved.
Attempts to communicate upset, distress, frustration were all ignored.
Use of “Verbal Behaviour” techniques when our child was non-speaking: forcing our child to attempt verbal speech in order to have needs met, rather than provision of a suitable communication system, causing stress and frustration to our child. Drink, food and bathroom breaks would be refused until they were satisfied with attempts at verbalisation. Toys were also locked away or high up, so our child would have to verbalise a request for them.
Tasks were repeated so often that our child was purposely doing it incorrectly since getting it right only resulted in it being repeated again and again with various “therapists”.
Our child was discussed at length, in his presence, as if he were absent. These discussions centred on all of their perceived “deficits” and how compliance was going to be achieved.
Refusal of food until task completion or a different food was eaten first, regardless of why that food was disliked.
Over-the-top, inauthentic praising when compliance was achieved, followed by toy, treat or affection being given.
Hand over hand prompts or even full physical prompts, despite my child’s obvious discomfort.
Not being allowed to say “no”, regardless of how reasonable it was in the circumstances.
Forcing my child to undertake a task he had a very clear and very strong phobic response to, until he vomited- which was ignored and the task enforced anyway (until I stepped in and insisted this not continue, at which point I was bullied by the BCBAs and told I didn’t have my child’s best interest at heart).
Ignoring my express wishes that certain things not be undertaken with our child.
Advising me to lock my child in an empty room during any “aggressive outbursts” and refusing to give them any attention or affection following it.
Our child was removed from the programme after a few months and unfortunately, PTSD has become an issue for both my child AND for me. Thankfully, our relationship has been restored and I parent with love, acceptance and respect at all times. I demand the same from anyone who is working with or supporting them. Our child says no now but it took a long time for this to be something that was comfortable for them.
This ABA took place in the last 5 years and at a place where new “therapists” are trained. They are all BCBA certified.
Once we left ABA, we engaged an SLP who was appropriately qualified and refused to use ABA techniques. They identified that our child has an Auditory Processing Disorder, which helped to inform the best ways of supporting the development of communication, speech and language. Even though verbal speech was not a specifie
d goal of that work, within 6 months our child naturally developed verbal speech.
Kelly Ogden
I am the parent of an autistic son. I am NT. I knew nothing about ABA but as soon as my son was diagnosed everyone said ABA was it. I did some research, but was on board because everyone else told me to be. That was a hard lesson for me. My gut started red flagging week one. It ultimately resulted in my ending ABA. Then I joined this group and started reading testimonies of people that have gone through it. It was exactly what my gut was screaming before I had knowledge. DONE. NEVER AGAIN. REPULSIVE. For me and my son anyway. I also let tho owner of the company how I felt. We never spoke again. Imagine that.
Allison Hubbord
We never technically did ABA but I pulled my child from speech therapy where the same approach was used, which in retrospect isn't surprising because it was from Easter seals and they were also the ones who were supposed to do the ABA therapy which we declined to pursue after originally being referred and started the process but never had actual therapy take place, we were still in the intake process and had met in home with one of the providers, and it was his lack of being able to even explain what ABA was or what its goals were that led me to explore it on my own and the information I found was what made the decision for us to not let the ABA proceed. The speech therapy, we actually saw the abuse take place so we told her from it afterwards.
