We need to do better.

Why is it so hard to refuse ABA? Why does it require so much effort to ensure that school is not pushing to use harmful and disrespectful tactics with my autistic child?

When I try to explain our views on ABA I am met with almost…pity…and certainly condescension that I must not understand what ABA is. Like I am some sort of pitiful, misinformed extremist just going off of hearsay or something. They hold back their scoffs (but I read their facial expressions as clear as day) and try to educate me on what they think I don’t know.

“ABA is not like that now”.
“It isn’t how it used to be.”
“There is ‘good ABA’ and ‘bad ABA’.”
“We don’t use aversives anymore so it’s OK now.”

“We just break things into steps,” they say.
“Breaking things down into steps is not ABA;  that’s common sense and good teaching”, I say.
“Yes, it is ABA”, they say.

(I’m unsure how they think they can try to tell me that one tool used in the entire practice of ABA “is ABA” as if it is not also those other things that I find tremendously problematic.)

I tell them I’m very active in the autistic community and have friends and acquaintances who have been through ABA or are former ABA providers themselves but have quit and regret their former profession. That I’ve read many writings by autistic people outlining the problems with all ABA and its ill effects.

I tell them I’ve read Ivar Lovaas and B.F. Skinner and tons of other literature written for ABA therapists and educators using principles of ABA. I tell them I’m well educated on this topic and very intelligent. I’m trying to get it into their head that this is not an issue of misunderstanding.

I tell them how ABA is compliance training and grooms children to be taken advantage of because they are taught they cannot say no. They are trapped in a room for therapy where they cannot escape the demands until they do whatever the adult tells them to. Sometimes for forty hours per week.

I tell them that ABA teaches children not to trust their gut instinct and to question their own judgement because they are constantly told that their experience is not true or not right. That things that give them pain are not actually painful. That the sound “isn’t that loud – hands down”, or the play-dough is fun, “touch it, it doesn’t hurt”. Except that it IS loud and it DOES hurt them.

Behaviors are frequently seen as attention-seeking and manipulative instead of as an expression of distress at something painful or uncomfortable or overwhelming. When a child’s gut instinct tells them something is wrong and then they are told everything is fine, how can they learn to trust their own judgement?

I haven’t even had a chance to get into the fact that so many people have PTSD from ABA therapy. No matter what I say, they still think that their ABA is OK. That they are not one of the bad ones. That I should be OK with them working with my child because they “just want him to be the best learner he can be”.

Now they think that since they explained that they do “good ABA” that I will give them carte blanche to work with my son. They say they want us to have a mutual trust now so that they can move forward and do ABA with him. Absolutely not. That’s not how this works. That’s not how any of this works.

I am enraged that I’ve come across so much resistance when trying to protect my child. That I am treated like I’m just trying to be difficult for not wanting my gorgeous six year old to be taught that he is broken and wrong and makes people uncomfortable and must change who he is to be okay. I’m irate that they refuse to listen to autistic voices and their allies who are shouting that ABA is harmful and in no way okay.

We need to do better.
We need to.
Our autistic community members’ happiness, safety, and even lives depend on it.

dobetter

 

*Note – I wrote this in the winter. Circumstances have improved since then but I think it is still important to share.

Valid Fears

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Image shows H’s reflection in the pizza shop window. He is eating pizza, playing on his tablet, and has his Talker on the table.

Pizza date! We had “meet the teacher” this morning, which was fun. Stopped for a slice afterwards. H is absolutely terrified to go into new stores or restaurants and wouldn’t come in so I parked him at this table right by the window while I quickly grabbed him a slice. It’s so hot and humid to be eating outside but we’ll always respect his needs and he definitely needs to not be in this place for whatever reason.

If, despite my reassurances that there are no ceiling fans or loud machines, he still is terrified, I’m not going to drag him in screaming and cause a panic attack for my own convenience and comfort. We frequently abandon plans if he is upset by them, as I would hope someone would do if I voiced extreme discomfort and fear about doing something.

It’s upsetting to me when we receive advice or read recommendations to repeatedly expose children to something that gives them anxiety to make them “get over it”. Let’s please stop traumatizing autistic children by forcing them to repeatedly endure painful and upsetting situations. It’s abusive.

I’ll stick with respecting my child’s very real fears and clear (albeit non-spoken) communication about what his body and mind need to stay safe. We build trust that his experience is valid and we will keep him safe as best we can. Just because the reason might not be clear or because *I* don’t think the place is loud/frightening/bright/dangerous does not invalidate his opposite truth.

#autisticadvocacy #AAC #respect #anxiety #sensoryoverload #communication #neurodoversity