When my son was seven months old, I found out he was blind. I discovered that he was autistic when he was two. When he was three, I created a floor time home therapy program for him and immersed myself in all the latest research on autism.
He went through early intervention until he was five. That’s when he started school in the LifeSkills program (because it was the only option available).
When he was eight, he was abused by a bus driver. When he was ten, he was placed in isolation for aggression. Even after having teachers stand up and say he was smart and they didn’t know how to teach him, that his communication challenges created frustration and misunderstandings, by the time he was eleven, he was homebound for safety reasons.
At the age of twelve, I finally got him into the Oregon School for the Blind, but they closed it down six months later.
He was abused by a care provider at the Arc of Lane County that year, and, by this point, he was having violent meltdowns/flashbacks throughout the day.
We tried prescription medication, but none of them worked at a dose that I didn’t consider to be a chemical restraint. I refused to do that to him. The psychiatrist thought I was ridiculous. I was labeled “a parent in denial.”
I had small children, as well. It was a dangerous situation, and I was desperate. I didn’t know what to do. I was terrified for him. I was also being told that I was the problem. I was referred to as a “pushover” who “lets him get his way.” I was told that I “spoil him.”
They said I was teaching him “learned helplessness.”
Ironically, that’s exactly what they were teaching me.
They broke me down and made me believe that I was doing more harm than good by defending my son, advocating for his rights as a human being, and telling him that he was loved and misunderstood. By believing in my child and showing him empathy and compassion, I was harming him.
Looking back, I know how they did it, how they got to me. I was terrified for him, and they capitalized on my fear. They told me that he would end up in an institution without their therapy.
They told me their therapy would change his life and that the only possible way he would ever succeed was if he received their therapy. I didn’t have enough support to do it my own way, and I made a horrible mistake.
I allowed them to come in, and even though I didn’t like it, even though it made my guts ache, and it felt so very wrong, I allowed it because I didn’t know what else to do.
These “professionals” had me believing that they understood my son and his needs better than I did, that my attempts to help him were actually detrimental to his long-term health and safety.
I allowed them to use fear as a weapon against us both.
I am an advocate by nature, so once the decision had been made, I went for the best there was to offer. I fought hard, an actual law had to be written to get him into the program, I had to hire an attorney and go up against a school district and county agencies to get him there, but I got him there. I thought my advocacy was a success.
The placement was a residential/educational ABA treatment program, and it was all the way on the other side of the country. They said it was the best program for autism in the world and patted each other’s backs when I did the leg work to get him in.
I don’t think they expected me to stay there with him, though, (although they should have known better). For two and a half months, I walked the mile route through the inner city of Baltimore, where the Ronald McDonald House was located, and up the hill to Johns Hopkins Hospital.
I did this multiple times a day. I still thank God for that walk; it kept me sane. It also opened my eyes to the inequality and economic oppression of people of color (but that’s a story for another day).
I spent the time I wasn’t on the neurobehavioral unit of the KKI wing at JHU “meeting” with people who were considered “leading experts” (well, it was more like arguing).
They called their behavior modification tactics “planned ignoring,” “reinforcing,” or “extinguishing.”
What I saw was a one-way ticket to complex PTSD for some of the most vulnerable children, children who had likely already spent years being misunderstood and traumatized. Their therapy was not therapy, it was compliance training. It was torture, and my son was a hostage.
I knew that I needed to get him out, but that wasn’t going to be easy. He was using aggression all day long now (because behavior is communication, compliance training is wrong, and my son was expressing his feelings about what was happening to him in the only way he knew how).
His only other option was to give up and live with a broken spirit. I’m not sure it would be possible to break that kid’s spirit; but I knew that if it was, it was only going to happen over my dead body.
The logistics for getting him home were extremely complicated. I was being told by the school district back home that I would have to reimburse the state of Oregon for the entire bill if I pulled him out. I didn’t care.
As I was working out an escape plan, I also insisted that they bring in a trauma-informed mental health provider, as well as a specialist who works with the blind to consult, and they did.
The director of the program had stepped in and actually agreed after listening to me and these colleagues, that the placement was likely doing him more harm than good.
My husband flew back, and he, myself, and my parents planned how to get him home. I was able to book a sleeping car on the Amtrak. It was a rough trip (the trip is another story for another time); but five days later, we were home.
I immediately started re-implementing the strategies I was told would create more problems than good; and, guess what?
He began to heal again. He began to make progress again, and his meltdowns began to decrease.
There were many more bumps in the road, and I have many more stories for another time, but this time it’s about parents being bullied into agreeing to the mistreatment of their own children, all in the name of “therapeutic intervention.”
I’m telling it to you now, ten years later, because it’s still relevant.
It’s still happening to families every single day. I am telling you this because I don’t want your child to develop PTSD. It doesn’t go away.
Say no way to ABA!
- Behave OR Be Well - February 8, 2020
- Emotions Go Both Ways, Unless It’s ABA - November 10, 2019
- Parental Learned Helplessness and ABA - November 8, 2019
Thank you for you words.
I’m sorry to hear you were treated that way. You deserve to have a say in your son’s well-being, especially when you suspect he’s being harmed.
For any worried parents reading this who aren’t sure if they are being misled or if their children are being mistreated, here’s an article that lists some red flags: https://www.wikihow.com/Tell-if-an-Autism-ABA-Therapy-Is-Harmful
Thank you for sharing that!
No problem! I hope it helps parents recognize when they might be being manipulated. I think that making a parent feel helpless, and sending the message that their instincts are useless, is truly an awful thing to do. Families deserve better than that.
I am an RBT. I have been feeling sick to my stomach about some of the things I have seen and things I am asked to do to implement therapy for children with autism. I’ve been struggling with these feelings and I can no longer ignore them. I literally just follow a BIP and implement what the BCBA puts into programming. I’ve been giving therapy for a year and a half now. Working so closely with kids with Autism , I get to see what frustrates them, what makes them happy, what triggers behaviors. I understand the kids I work with, better than the BCBA’s. I understand your frustration. Everything you have said, I agree with, and good for you, for standing up for your son! There are some days I go to work only because I want to make sure “my kids” are not mistreated. It’s not right to treat people like you would treat a dog. Your story was more validation of why I need to get out of this field. Thank you for sharing it!