Parental Learned Helplessness and ABA5 min read

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.”bI 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.

It wasn’t.

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!

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6 Comments

  1. Thank you for you words.

  2. 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

    1. Author

      Thank you for sharing that!

      1. 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.

  3. 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!


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