(Abuse, ableism tw) Yesterday I visited a preschool Portia’s therapists and the public education system want to put her in. Portia receives services because of her developmental disabilities. It’s a program that’s a part of public education and even infants can qualify. Before yesterday, it seemed her therapists only concern was making sure she was developmentally up to date physically, and educationally (think fine and gross motor skills, speech etc).

The preschool was-my realization. The preschool was full of kids that had various disabilities all on the “socially disabled” spectrum. Children were given directions in a “fun” manner around a circle and were literally forced to participle. Even if you didn’t want to. Physical redirection was used. That means children not looking at the teacher would had their heads physically turned towards them. Children who weren’t doing the arm movements for the dance correctly had their wrists grabbed and were forced to do the movements. Forced high fives. Forced everything. Absolutely no child had a choice for participation. It was do it or someone will grab your body and do it for you.

One child, a nonverbal autistic child, at the table where they were given instructions to glue hearts on a valentines box, had a stick of glue held in front of him by a therapist. She had a hold of his wrists as he kept reaching for it. “What is it. No. What is it.” She repeated over and over as he whimpered and reached for the glue to participate. This went on for about 15 minutes.

He also endured one on one ABA from the teacher using a reward only method (praise) for following instructions and making eye contact.

A child had a tantrum and was held down. I asked how a child having a melt down was usually handled. They said that it depended on the child. She seemed to avoid my question but told me that she had “lotion” that she would have them rub on their hands in front of the class and called it “calming lotion.”

I saw a child being held tightly in a therapists legs for not crossing his legs and bouncing them.

I asked what the purpose of the class was, my therapist explained this class was meant for “social therapy”, by forced participation.

This program is paid for and supported by the education district.

Never mind that restraining a child, forcing a child to do something, allowing an adult access to a children’s body with no choice for the child, and forced socialization and physical contact (forced high fives as an example) are all inappropriate and I would personally define that as abuse. But what’s important is all of this therapy is not scientifically to be successful. It’s…non effective, it does nothing but create children who believe they must follow orders (for participation, social activity etc) by an adult, allow anyone to touch their body with no ability to say no, and allow to be physically redirected by that adult for not meeting the demand.

In what way is this educating children socially? How come in a regular classroom this is abuse but in a class with a bunch of disabled kids it’s therapeutic? I’m just…I’m really irritated and disappointed that stuff like this is funded by the education system.

Im not sure if I should even mention this. But when you are an abused child initially you fight back. Sometimes that fighting back lasts a week, sometimes months, sometimes years. Eventually you reach this point where you stop fighting and your brain shuts down and you go blank, almost like you separate from your body and don’t reject it. Sometimes something twitches inside from time to time to fight back, but you actually end up fighting the urge to defend yourself rather than stopping the abuse. That’s the look I saw on the kids faces. They were made to hold up dolls with happy faces “I’m happy today” because they are being conditioned to just ACCEPT what is happening to them.

I am planning on pulling Portia completely from the entire program. She’s never been to that classroom and never will, but the moment they believe she isn’t socially “fit” and needs to be in some sort of conditioning class to make her appear normal, is the moment it doesn’t benefit her. Let’s be real for a minute: the autistic brain cannot be hard wired, it cannot be cured. This is because we still don’t fully understand what autism is. You can certainly force and autistic person to look and seem like an autistic person, and autistic adults who have experienced this sort of “conditioning” all have PTSD and more.

I literally do not ever care if Portia doesn’t act “normal” socially. I don’t care if she doesn’t look people in the eyes and I DEFINITELY do not care that she doesn’t want to touch anyone or let anyone touch her. I don’t care if she doesn’t want friends or if she likes people. I don’t care if she lines up her toys when she plays with them. I don’t expect a man without legs to run a marathon and I don’t expect Portia to be this social butterfly or become a politician or something. She’s content with who she is and society has the obligation to accept her the way they except a deaf person and sign language.

I’m just feeling very irritated. It’s 2017 and there was a whole room full of children enduring therapy that doesn’t actually work and scientifically has absolutely ZERO grounds to be used in an education system. I feel like it’s 1940 and they want to treat some house wife’s depression with electroshock therapy or some gay mans sexual attraction by giving him female hormones.

If I don’t speak out against it then 10, 20, 30 years later it will still be there. It will still happen.

Can you just pray for me, the work that’s required to pull her out…it isn’t going to be easy. I’m going to look like the crazy paranoid mother. In a lot of ways because of her disability she’s basically forced to be state educated. As crazy as this sounds I’m so scared of her being forced to go to public school I’ve thought about leaving the country. Ive personally witnessed so so much abuse in the schools towards autistic children…I just can’t accept it.

lilith-eves-last-stand  asked:

Sorry if this comes off ignorant, I don't mean it... My son is 4 1/2 and was diagnosed two years ago. I try to do the best I can and let him be him 💕 but while he's in speech therapy (he's still moving into the idea of talking), schools in the area (private) push ABA for students with autism. But I see young adults like yourself saying ABA is NOT good. I'm more inclined to listen to someone on the spectrum than those not, but what is the issue with ABA?

First, I want to say that I am so glad that you are turning to the autistic community for help. This isn’t an ignorant question at all. There is so much conflicting information out there about ABA that it can be hard to even know where to begin. It sounds like you really want to help your son as best you can which is admirable. 

To start off, not all therapy labeled as ABA is actually ABA. I’m going to explain what the issues are with true ABA and then explain how to figure out if the therapy they are trying to push on your son is ABA or not. 

ABA stands for Applied Behavioral Analysis. It is a scientific method that involves observing the individual in order to identify “target behaviors,” i.e. behaviors that are undesirable to the parents/therapist. Next, aversives, rewards, and operant conditioning is used to eliminate these behaviors and encourage wanted behaviors. Overall, this may not sound like a bad thing, so let’s get into why this therapy is harmful. 

The groundwork of ABA therapy is the idea that autistic people are broken and in need of fixing. Our natural, non-harmful behaviors, such as stimming or lack of eye contact, are targeted as behaviors in need of fixing. The main focus of ABA is making a child “indistinguishable from peers,” i.e. to make the child seem “normal.” 

This often includes things like getting rid of stimming (often with the phrase “quiet hands”) and forcing eye contact in order to make the child less noticeably autistic. The problem with this is that stimming is a coping mechanism for autistic people. We stim to regulate our emotions/senses, cope with stress, and express ourselves. Eye contact can be uncomfortable or even painful for us and being forced to perform it can be just awful. 

Further, changing these behaviors does nothing that is truly beneficial for the child. Instead of being trained out of behaviors that are non-harmful, an autistic child should be taught ways to manage their autistic traits in a way that is useful and productive for the child. For instance, if a child is uncomfortable making eye contact, learning to look at a person’s forehead or nose is a great alternative as most people can’t tell the difference. 

Further, due to the focus on making a child indistinguishable from peers, there is often a push towards verbal speech even when atypical methods of communication like sign language or AAC would work better for the child. 

ABA therapy operates by using rewards/reinforces and punishments/aversives to train a child to perform wanted behaviors and to stop unwanted behaviors. Rewards are withheld until the wanted behavior is performed and aversives are used when an unwanted behavior is performed. Often, foods, such as gummy bears, candy, or other tasty treats, are used as rewards as well as praise or affection, access to a comfort object, break time, stickers or stamps that can be traded for privileges/rewards, or access to a special interest. Additionally, some therapists make use of a clicker, a device that makes a loud click sound originally used for training animals, to indicate that a wanted behavior has been performed and that a reward is coming. 

For aversives, the removal of a comfort object, withholding of snacks, removal of reward items, or prevention of engagement in a special interest are often used. Some therapists also use “taste aversives” like pickle juice, vinegar, hot sauce, or other bad tasting edibles, as well as “tactile aversives” which would be making the child touch something that sets off tactile defensiveness or distress. Withholding praise or affection is also used as an aversive. 

In DTT (Discrete Trial Training), a form of ABA that is considered to be kinder than other versions of ABA, the therapist will not look at, engage with, or respond to the autistic child until the desired behavior is performed. Similar methods are employed when unwanted behaviors are displayed. 

As a treatment, ABA is centered around compliance training, in other words, making a child compliant to the desires of the adults in their lives. Rather than focusing on how to help a child live the best autistic life they can, the focus is put on making the child seem “normal” no matter what the cost to the child. This serves only to make parents more comfortable and does little to help the autistic child as they progress through life. 

Using aversives on a child ranges from bad to cruel depending on the aversive used. Withholding rewards from the child, particularly when those rewards are food or other necessities, creates insecurity in the child. Further, by training a child in this way, the child becomes more vulnerable to victimization. When you are told by all the adults in your life that you must ignore your own pain and discomfort for the sake of adults, how is a child to know when they are being abused? How is a child to know that the adult touching them in that way is wrong when they are forced into hugs which are painful for them? 

You may have noticed that what was described here sounds an awful lot like dog training, and that’s because it is. ABA trains a child in the same way you would train an animal which is dehumanizing. Autistic children are not animals whose behavior should be crafted to suit those around them. Autistic children are unique individuals who need support and care. 

Finally, ABA therapy is often a full time job for the autistic child. Often, 40 hours a week or more of therapy is recommended for optimal results. It is ridiculous to put a child through such a strenuous routine. 

So what are you to do instead? Obviously you want to help your child live the best life possible which is wonderful. There are plenty of therapies that can be very helpful to autistic children. Speech therapy, which you’re already doing, can be great for children who are struggling with verbal speech, though methods of AAC should be provided until the child is able to communicate verbally (and even then, AAC should still be available for times when the child goes nonverbal/semiverbal). 

Occupational therapy to help with sensory integration or motor difficulties or other areas in which the child is struggling. There are also play-based therapies like floor time which can be very beneficial to autistic children. No matter which therapies you utilize to help your child there are a few things to keep in mind. 

First, therapy should be supplemental according to the child’s need rather than the central aspect of their life. If the therapy schedule would be exhausting for an adult, it’s not appropriate for the child. Next, does this therapy help the child live the best autistic life they can or does it focus on making the child appear to be “normal”? Normalization is for the benefit of parents while good therapy focuses on helping the child with things that the child finds problematic such as learning to cope with sensory issues or learning better communication (whether that’s verbal communication or AAC). 

So how do you figure out is what is being presented to you is true ABA or something else masquerading as ABA? There are some questions you can ask to help sort this out. First, though, we need to go over why there are therapies that aren’t ABA calling themselves ABA. In the US, most insurance plans will ONLY cover ABA for autistic children. As such, many therapists who perform other therapies have resorted to labeling themselves ABA in order to be covered by insurance. This allows them to work with children that otherwise wouldn’t be able to access these therapies. As such, what is being pushed for your child may not be true ABA. 

Here are some questions to ask:

  • What is the goal of the therapy? As we’ve discussed, ABA focuses on making the child “indistinguishable from peers” or normalization. If you hear that phrase, turn away and don’t look back. Even if the therapy isn’t ABA, the goal of making a child appear “normal” is not a useful goal for the child and can be detrimental. 
  • Does the therapy make use of rewards and aversives? We’ve discussed why aversives and rewards can be damaging to a child. A good therapy for your child will use other means to discourage harmful behavior. 
  • Does the therapy emphasize compliance? Compliance makes for a “well-behaved” child but does not lead to a healthy, independent adult (which I’m sure is what you’re hoping for in your child’s future). Therapies should focus on helping a child manage any harmful traits they have without forcing them to be compliant to an adults wishes. Just like all children, autistic children will not always be obedient or follow adults’ wishes. This is how it is supposed to be. Children need the space to make their own mistakes and learn and grow. Compliance teaches a child to shutdown their own needs and desires to fit the desires of another. 
  • Does this therapy discourage non-harmful behaviors? Autistic children will sometimes engage in behaviors that are harmful to themselves or others. These behaviors definitely need to be addressed and worked on. For instance, a child’s stims may physically hurt another person such as grabbing onto other people to stim. This behavior is not ok and a parent/therapist should work with the child to redirect the behavior. However, ABA often focuses on stopping behaviors that are not harmful. For instance, most stimming does not hurt anyone. It may be atypical behavior, but it generally does not hurt the child or anyone else. If a child is being bullied for their stims, that should be addressed with the school to change the harmful behavior of the other students rather than stopping the child from engaging in behaviors that are useful for self-regulation and expression. A good therapy will focus only on discouraging harmful behaviors. 
  • Are you allowed to observe the therapy as you please? In non-harmful therapies, you will generally be allowed to observe the therapy whenever you wish as they have nothing to hide. If a therapy will not allow you to observe what is being done, then it may be harmful to your child. However, even some therapies that are harmful may allow observation, so, when you do observe, make sure to really pay attention to how they treat your child. 

If the therapy being presented to you passes all of these questions, then it is not true ABA and could potentially be helpful for your child. As we’ve discussed, there are many therapies that can be beneficial to autistic children. Some useful goals of therapy could include:

  • Changing harmful behaviors- if a child is causing harm to themselves or others, the behavior needs to be addressed and the child should be provided with alternatives to help redirect the behavior. For instance, if a child is playing with their own poop, the child needs to be taught that this is unsanitary and provided with playdoh or other sensory tools to use to redirect the need for sensory input. Similarly, if the child hits others while melting down, one alternative may be providing the child with a pillow or stuffed animal to hit instead. 
  • Communication- While many therapies focus on speech, the true goal should be improved communication. This may include speech as a goal if that is within the child’s abilities, but it should also include forms of AAC to be used for communication either until the child is able to learn verbal speech or instead of verbal speech if speech is too difficult for the child. AAC can include letter boards, picture boards, text to speech apps, among others. Sign language can also be useful in facilitating communication. 
  • Managing Sensory Input- Many autistic children are hyposensitive and/or hypersensitive to sensory input. As such, it is important to teach the child ways to manage their sensory sensitivities. This may include managing their sensory diet by setting aside time for sensory play, use of sensory defenders like headphones/ear defenders/ear plugs, sunglasses, or other methods of regulating sensory input, and stimming as a method of regulating sensory input. 
  • Anything that causes the child distress- If a child is struggling in an area and it causes them distress, that is a good thing to work on in therapy. For instance, if the child is having frequent meltdowns, one of the goals of therapy should be to figure out why the child is having so many meltdowns and find ways to accommodate the child to prevent meltdowns. Similarly, if the child struggles with socializing with other children and is upset by this, social skills classes may be beneficial. If something is upsetting for the child, then it is likely a good goal for therapy. However, if the child is not bothered by something, therapy likely isn’t necessary (unless it is causing harm to the child or others).

So this got super long. I hope I’ve addressed everything you needed covered. If you have anymore questions, you are welcome to send me more asks or check out @autism-asks to get more info about autism. 

Finally, I’m going to leave you with some links that cover ABA from other perspectives:

I hope this helps you and your son! 


Since conversion therapy is looming in everyone’s consciousness right now:

This is your regular reminder that ABA, the generally-recommended therapy for autistic children, is literally conversion therapy with an extra dose of “auties aren’t even real people” thrown in for good measure. It was conceived by the same people, from the same research, for the same ends: To brutalize and torture children into a narrow range of “acceptable” behaviour.

And it is considered totally legitimate and valid and even preferred by the overwhelming majority of the medical industry.

Do not leave disabled people out of your activism.

I wanted to ask you this question specifically because I think we’re in similar situations. I’m applying for a four month intensive that will give me a Developmental Disability Counselor certification and a fast track to employment in this field. The only catch is that I will have to take a course called “Introduction to ABA”. I realized that in order to get to what I really want (changing the system from the inside and being able to truly live “Nothing about us without us”), I’m going to have to submit to the ABA course and recognize that it’s probably not the venue to start explaining why it’s bad. I was also advised to use “Asperger’s” on my application (since disclosing is actually my selling point in this situation) instead of “Autistic”. 

The actual question is: Is it OK for me to do these things? I feel like I’m betraying my community by doing this, but I do have my eyes on the prize, and I realize that in order to get through the door, I’ll have to make some sacrifices. My adviser told me that once I’m employed there will be room for me to start improving things for us, but do you think the community will accept that I’m doing this for the time being?

Oh gosh, I love this question so much because it deals with a whole lot of really big things that are also really hard things.

When it comes to ABA, you are right. You have to get through the class in order to make the changes you want to make. Without, you are excluded from the positions of power that allow you to affect the most change.

So take the course. Don’t just take it though, excel in it. Be the best student you know how to be. Ask questions - not to be subversive or discredit the practice - but to learn everything about it that you can. It is perfectly valid to learn the ins and outs of ABA so that you can undermine it.

It is so exceptionally important that the people who have been abused by ABA are the people that lead to fight against ABA. But having working knowledge of the practice from the other side is another important aspect of that fight.

Pathos and ethos are equally important in that each has a role in affecting the people around us. Some people are going to be swayed by the emotionally charged appeals of those who have suffered abuse, while others are going to be swayed by the appeal to authority. Those of us who have been through ABA are the emotion, those of us who learn it are the authority.

When you put those two together, you have the most universally convincing argument possible. I wish we could just take people at their word, but I’m also a realist, and recognize that in the world we live in, we need both voices.

Even so, there are ways that you can be subversive while also attending the classes. Let’s take person first and identity first language, for example. Most people are going to push for person first. You can say that you prefer to use autistic, which is the standard used by the self-advocacy groups like ASAN.

If anyone calls you on it, you have two routes: 1.) state that APA guidelines allow for identity first language or that 2.) if they would like you would be happy to provide a citation for the use of identity language. In fact, it is not exactly uncommon in academic publications that use identity language to see a citation for a study on the need for identity first language. I suggest adding one of the common citations for that into MS Word so you can insert it easily in your preferred (presumably APA) formating.

You can also reframe questions in ways that don’t make accusations but do get other students thinking. Instead of saying, “ABA causes PTSD,” for example, you can ask a questions like, “I read that some people that went through ABA were later diagnosed with PTSD. Obviously ABA does what it is supposed to, but how do I address parents’ concerns about harmful effects? Are there any studies you can recommend regarding long term effects?”

I have yet to have anyone do anything other than blow that question off, but honestly? That’s all you need to start changing the minds of people who are open to change.

Keep yourself educated on studies in other types of therapy. CBT has proven effective, and so has putting the parents through “Awareness” training (put another way, ABA to make the parents understand autistic perspectives). Seek things studies out, and if you have the opportunity use them. Have to write a paper on ABA? Rather than frame it as ABA is bad, frame it as self-advocacy groups have pushed back against ABA, do their arguments have any merit? Cite long term studies on ABA or the lack thereof, and frame it as, “if the advocacy groups are ever going to be onboard, these studies need to be done to address these concerns.”

This, btw, is pretty much how I handle all of my psych classes. Rather than assault the institution directly, I ask questions that I know are loaded or unanswered and leave it at, “it seems prudent to address these concerns.” This is especially important with ABA because while it is awful for many reasons, it is effective. Like, it does what it claims it does. So don’t even try, at least not in that setting. But that doesn’t mean you can’t be subversive even as you toe the line.

As for the whole Asperger thing, I wouldn’t personally do it because I’m that girl who would dare someone to turn me down on the basis of my autism, but I absolutely do believe that when you’re dealing with the hierarchy of stigma it is okay to call yourself an aspie or an HFA.

The simple reality of it is that people who want to work in that field are a dime a dozen. There just is not a shortage of people. In order to Change the World from the inside, you have to play by their rules, at least for a little bit. If you don’t, they will just ignore you.

Put another way, respectability politics of any kind is bullshit. But I have no problem at all playing respectability politics to subvert an institution.

There’s a theme in all of this that I want you to consider: You are using their tools against them. That is so, so, powerful when fighting for marginalized individuals, and there is nothing wrong with it. It is and always has been the primary strategy of subversives throughout history, for good or bad.

I have a lot more thoughts on this, but this is already long so I’m going to call it here. Keep your eye on the long fight. Let those of us who can fight the now fight. We need both.

Autism Gothic

*Everyone else is Normal. You are not. What is Normal? No one can tell you. You are not Normal. You must become Normal.

*Therapy will fix you. What therapy? Don’t worry. Just tell us what feels the worst…

*Autism Speaks loves you. And tells everyone that you’re a disease that ruins marriages, destroys families, and can never be really a person. But they love you. So much. You just can’t see it because you’re autistic. They love you. Really.

*You have missed a developmental milestone. Is there a test to make up for it? No one knows…

*Your medicines are chemicals, and that is Bad. “But EVERYTHING is made up of chemicals!” You explain. Oh, you just don’t understand. Chemicals are Bad. Eat kale and you will understand.

*You can’t speak. This is willful defiance. There will be Consequences. The sacrifices must be made.

*”How will we ever understand these strange people?” Allistics ask. “Well, you could talk to us…” you offer. No one hears. “How can we understand?” Allistics keep asking.

*No one flaps. You cannot tell what they feel. “It’s on our faces!” They say. You cannot read faces. You must guess correctly, or there will be Consequences.

*”That’s for children. You must have a young mental age.” You ask when they plan to stop using spoons like children do. “That’s different!”

*The hypocrisy is summoning…something. You do not know what. You welcome its arrival and bake it a cake.

*When it arrives, it asks politely for a ritual. You complete it word-perfect, with all the lovely rocking and bowing and well-defined nuance of speech you love. It is pleased. You are pleased.

*It is the beginning of a beautiful friendship.

I shouldn’t have to say this, but if an “educational method” is not okay to use on neurotypical children, then it’s not okay to use on autistic children. You wouldn’t spray water (or hot sauce) on a neurotypical child for making mistakes in math, so why is it okay to do to autistic children in ABA? You wouldn’t take away a neurotypical’s child favorite toy for misspelling words, so why is it okay to do to autistic children? You wouldn’t hit neurotypical’s child hand for having bad handwriting, so why is it okay to do to autistic children?

Even if you are trying to teach autistic children useful skills like tying their shoelaces or interacting with other people (and not trying to make them less autistic by suppressing their perfectly natural autistic behaviors, like most ABA “therapists”), you still shouldn’t use abusive and traumatic methods! Using ABA methods to teach neurotypical children school material is abuse, and you know it. So is using ABA on autistic children. For any reason. Please remember about that.