Elinor -
It is worth looking up the 1965 Life Magazine article on ABA when it was conceived to understand the pedigree - just knowing the basic underlying principle and how they started using electric shock as punishment (and still do in some in-patient settings) speaks volumes. Those obviously abusive interventions have been replaced with "withdrawal of interaction" - basically social rejection, which I would argue is exploiting a deep vulnerability. When I was treated with ABA, this method was used, and frankly I would rather be shocked.
The goal of ABA is to bring about the extinction of "unwanted behaviors" (unwanted by allistics), since autism continues to be diagnosed based on behavior, not experience. There is no care taken to address the fact that the behaviors are natural to autistics and are how we regulate our sensory overload and nervous systems etc. So regardless the form of punishment used, the goal is tomake allistics feel more comfortable with autists at the expense of the autist feeling pain and stress.
The outcome is reinforced in the world at large, because it is socially acceptable to shun autists who behave autistic, and so if ABA is "successful", the autist is placed on a life path of trying to pass as neurotypical mask natural behaviors and mimic allistic behaviors that are neither natural nor innately comprehensible.
What never gets addressed is the enormous cost of passing. Using skinnerian conditioning to train autists (like dogs) to mimic unnatural behavior means that they are taught that they must show up and interact with others by pretending to be someone else. We are taught to fear that someone will see who we really are if we don't manage long lists of rules for interactions. This increases the anxiety of social interaction while simultaneously rendering it inauthentic. It deepens shame in who you are, whether you are successful at passing or not.
While I was passing, I left every social encounter and cried in the car afterwards and thought about suicide because I didn't know if I had seemed "normal", I didn't know if people really liked me because they certainly didn't know who I was, and because I felt like a monster inside. You cannot have healthy self-esteem this way.
Elinor
Stephanie -
Let me go ahead and make one thing very clear and specific. I know there are thousands of variations therapies that are called ABA. Not all of them are exactly like what we went through. I do believe that a lot of our fighting in the autism community between parents and autistic adults comes from the miscommunication that all ABA therapy is exactly the same. That's just not the case anymore in this day and age. ABA still has its original Standard principles behind it. It's principles are to make the autistic person look and act as allistic or normal as possible in society. This is no more than dog training to become the world's greatest actor to be somebody that you're not. That is still the basis of ABA. If your child is undergoing variations or modified from ABA type therapies then those are probably not quite as damaging as what me and Kath have been through. But all in all ABA is more for the parents then it is for the child. Why would you send your autistic Child to her therapy to teach them a life skill that you would patiently teach your allistic child at home? That really doesn't make much sense to me other than the fact that some parents justcannot find enough patience to teach that life skill. Now that does not mean that parents are not patient that means that it requires even more than what some people are able to give in order to care for the autistic person. It takes a great deal of patience. Even more so than what you think it would. I'm raising two children on the spectrum. I'm on the spectrum as well. My patience wears thin quicker than a lot of people. I'm constantly having to remind myself be patient they learn differently. I focus on their Strengths. I discipline bad behavior. I reward effort I reward good behavior. And I don't reward with treats I give verbal praise and high-fives. It's Constant patience. It's about stepping into their world and learning from them before you teach them anything. So some of us laugh when we're mad and some of us cry when we're happy. Just because more people in the world don't use their emotions like that does not mean that we are broken. We have feelings. We have empathy. We have passion. We are loving. We are compassionate to others. And just as we are all of those things, we can be assholes, jerks, ignorant, rude, abusive, and just all-around angry. But those have nothing to do with our autism and everything to do with what is in our personality. Her personality and her autism have nothing to do with each other. Just like my intelligence has nothing to do with my autism. I'm not smart because I'm artistic I'm smart because I'm smart. And between me and my brother he's the smartest out of both of us. He's also Allistic. But you have to remember that some therapies are really good I can help with the general basis of ABA is very detrimental to a person's mental state. I have friends here in Alabama in my hometown even that live in an assisted living home at 30 years old because they can't cope with the PTSD caused from ABA. Yes they are very independent people that their PTSD messes with them so badly that they can't function well enough to be trusted alone. It defeated the entire purpose of what their parents were trying to achieve with ABA therapy. And that's what so many autistic adults are trying to tell parents. Compliance training in general can be very very unhealthy for any child with any kind of developmental disabilities or struggles. I also understand there are people here who have children that are very low on the spectrum. Just because you're labeled low does not mean that that person does not possess the The ability to learn how to be independent it just takes more time. Most autistic adults end up in homes because when they turn 18 all of the therapies stop people quit trying to put in as much effort to help and they're rarely any places that have support systems for autistic adults. It's like as soon as we hit 18 or 21 or thrown away to the sidelines and left with no help. That's why everybody claims that autism is such a tragedy. We tried to getting to talk for 18 years and it didn't work so we gave up. When it may have only taken two more years to actually get that person to save their very first words. Does anybody understand what I'm saying??? People give up way too soon and label was a lost cause when we could be so close to reaching that goal."
Personal Testimonies from other sources
https://www.reddit.com/r/autism/comments/50bhcd/are_there_any_adult_autistics_who_are_willing_to/?st=isida1k8&sh=4b2e6577
Thomas's Story
ABA and my experience with it
This blog is associated with the Autistic Allies group on Facebook, and is a portal to useful online content. We primarily support the principle of acceptance, which exclusively involves the use of interventions that assist an autistic individual to reach their potential best selves, rather than trying to "fix" or "cure" them. We maintain a positive outlook about autism and actively work to dispel negative myths and stereotypes.
