Potential Trigger Warning- Reader Discretion Advised
Some people do have PTSD and have experienced trauma because of poor implementation of ABA services. If someone shares these feelings with you please do not tell them “it worked for me.” Listen with an open mind and respect that their experiences were different from your own.
I took a few days off from writing a blog post to really give myself a chance to think about how I wanted to tackle this subject. If someone asked me to answer the question is ABA therapy helpful or harmful my answer would be “Yes.”
Imagine you have a hammer. You can use a hammer to create beautiful things but you can also use it to destroy property or hurt people. It is not the tool itself that is evil or good but the person who is wielding the tool. The person might even try to use a tool properly but due to a lack of proper understanding causes damage. Imagine a person trying to hammer in a screw. They understood that a screw can hold things together and that a hammer is used to hit small pieces of metal into the wood to hold them together. Misunderstanding can do a lot of harm.
If you know my blog then you know by now I love lists! So I am going to list some of the concerns brought up by people around the internet and address those issues.
- ABA is the same as training a pet and my child is not an animal. If people hate any part of my post it is going to be this part and I am going to get really almost cruel in my bluntness before I resolve so please bear with me. YES, your child is an animal so are you and me and all people. We are all classified as animals! In one biology class that was one of the first questions he asked the class was if humans were animals and many people said “no” and were quickly corrected. Now if you are a religious person I do not want to disqualify your belief that God made us above animals. Regardless of my belief if that belief influences your judgement then I do not want to be ignored because of a perceived conflict. We are set apart from other animals in regard to our intelligence. However, we are similar in most other ways. Behaviorism is used in animal training but humans are, by virtue of our intelligence, infinitely more complex. Our complexity is the reason that I can train a dog in a month and humans take a lot longer to learn. Behaviorism studies how our environment affects our behavior and as an extension of that our learning. Is a dog going to learn when he hears the dog food box open he is going to get fed? Is a child going to learn when you open a box of cereal in the morning that he/she is going to get fed? So why do some kids need ABA and others don’t? Well, why do some kids need to do math problems 100x before they understand it and other kids only need to do it once? We need to stop trying to label this as “training my child like a dog” and start thinking of it as “using the environment to teach.”
- Compliance Training, you can’t say no! In a corporate world, compliance training focuses on teaching the rules that apply to the job. Basically, teaching someone what they are or are not allowed to do. An abusive example: Not allowing a person to go to the bathroom until they have finished 12 hours worth of work. A healthy example: Now allowing a person to hurt small animals. With autism, these things can become harder to determine if the training is abusive or healthy at first glance. There was a child I worked with who would not act appropriately in the bathroom. In this scenario, I was not allowed to go into the bathroom with the child. The child would use bathroom breaks to escape from getting school work done, spend excessive periods of time in the bathroom and would play in the toilets and sinks. With this situation, the bathroom became a restriction. Telling a kid they can’t go to the bathroom usually is not okay. However, the student was given multiple chances to go to the bathroom a day and given an extra bathroom pass once a day if needed. Honestly, the child had a ton of bathroom breaks, in reality, the process just restricted bathroom breaks to appropriate times. Once in the bathroom, the child was given a set amount of time to get everything done. I would stand at the entrance and give a “30-second” warning when the time was almost out and count down the last 10 seconds. The time was set to give enough time to get in and get out without time to play. Sometimes compliance training means you can’t say no. If I am driving my son somewhere a seatbelt is not a choice.
- Removing comfort behaviors, stop stimming. First, some stimming behaviors do have to stop. These take the form of injurious behavior. I know a lot of people when they go to the dentist and their mouth feels numb they constantly poke at their mouth with their tongue. They are trying to get sensory input. Some people on the spectrum do not feel sensation for certain things as easy as a neurotypical person. Self-injury can be a result of trying to get sensory information just like a person poking a numb spot can. Alternatively, if a person has too much sensory input and they are trying to drown it out they can hurt themselves so that their focus narrows to the one painful thing instead of the sensory onslaught. If it injures a person then it needs to stop. In regard to nonharmful stimming, I walk a very narrow middle line. In an ideal world, these people could stim all day and it would not be a problem. In the real world, people are awful and those behaviors can make people a target. Just today I saw a video from the news of a man out with his mom playing Pokemon GO who had a condiment sprayed on them. One of the people who did it said, “Yes, I got the retard.” As a mom or a therapist, I try to find healthy opportunities for stimming that do not make the person stand out. For example, my son loves to spin things so I found a keychain that was a flat round disk (ocean themed) with another metal disk on top of it with sharks you could spin. It gave him the chance to spin something in his pocket or even in the open that did not draw attention like it would have if he was spinning in circles. The subject overlaps with my next topic.
- Ableism, discrimination. Should an autistic person be allowed to stim if it makes them feel less stressed? Yes. Is it wrong that these people should have to find ways to “look normal” to make other people more comfortable or to avoid abuse? Yes. Does this mean I will take a hard line on this issue? No. Now this is a personal opinion, my job as a therapist and a mother is to teach to the best of my abilities ways to improve the life of my client and child. Sometimes that means finding alternative stims that fit in and other times those options are not available and it means letting them do what works for them. It is on a case by case basis. I have to keep in mind that what should be and what is are two different things and I need to do everything I can to reduce risk of abuse. I work to help these people fit in as best I can and then turning around and fighting tooth and nail to help normalize autism so that I don’t have to keep trying to force autism into a “socially acceptable format.” As with anything that can cause discrimination you have to avoid risk situations and fight to remove the risk at the same time. It sucks, it hurts, and it is not fair but I would never be able to live with the guilt if someone I worked with got hurt by others because of a behavior that I could have taught an alternative for. Sometimes there are not alternatives and it isn’t fair which is why I fight both fronts.
- Denying escape. Some people feel that extinction means a child cannot escape. Let me say that any goal in ABA therapy should be one a child can accomplish that slowly pushes the bar forward. The best example is if I put a child in a room with one door. Before I closed that door I would build another one and make sure the child knew and could use the new door. Then and only then would I board up the old door. When a child uses an inappropriate behavior (like hitting) to escape from something they would be taught an alternative behavior that would let them escape and then the hitting behavior would go on extinction. If the child cannot do the alternative behavior then ABA is not being used appropriately and that is not okay. This is the perfect example of applying ABA practices inappropriately.
- ABA therapy ignores my child’s feelings. Now this statement is kinda true. As a practice ABA therapy does not concern itself with feelings but only with behaviors. At least, it ignores feelings in as far as paperwork is concerned. There can be a balance that is sometimes overlooked in education. Let’s say a student is punching a wall. I could infer that the child was frustrated from multiple things. I could then put my hand between the wall and the child’s fist, say that I can see that they are frustrated and ask them to tell me what is wrong. On paperwork, I would only write the behavior and the consequence, not the inferences. ABA focuses on facts and I cannot say for a fact that the child was frustrated. I know what happened before, during, and after the behavior as facts that I can use for the purpose of data collection. However, part of intervention can include teaching and using more emotional based language. In that case, I might record behavior started after losing a level on Mario. The behavior was hitting the wall and the consequence was the therapist put their hand in between the wall and the child’s fist and discussed emotions. All of these were observable events.
Is ABA therapy evil, it depends who uses it and how they use it. Parents have to be vigilant. There is a lot more I could have covered and I could have gotten into a lot more detail on some of these subjects (which I probably will later) but this is getting long as it is. Restraint was one topic that I did want to get into more detail on but want to handle in another post.
What are your thoughts, feelings or questions on these topics? Is there anything you would like me to cover? If I get enough response I might eventually do a Q&A section!
Navigating the school system can be a nightmare. Trust me I did it this past year and even knowing what is going on it was still challenging. There are groups out there designed to help you and be advocates for you in the IEP process. I do not know much about these groups as I did my work independently. One of the biggest challenges is navigating a system you do not understand. This post is designed to help break down some of those illusions. Yes, they do give you rights and give you the whole “speech” but being told what your rights are is different than understanding them.
- Your child is money. The first and in most ways the evilest part of the system is that your child is a check. Ever wonder why schools are so dead set on attendance. They give out awards which seem like punishments to students who got sick. If you miss more than a few days you can get in trouble with the law and even when schools neglect other issues they are OCD about checking and reporting attendance. Well, each school gets money each year based on enrollment. In an ideal world ,they would get a set amount and if the child had to move that amount would be prorated for that month and split between the schools. In the real world, most schools get paid on a day by day basis. If your child is in the seat 3 out of 5 days in a week then the school only gets paid for those 3 days. That creates a huge insentive to keep your child in school. If you kid is having a bad day, needs a break, or you both just feel emotionally abused by the system that is just to bad.
- Extra programs cost more without a comparible pay bump. If your child needs additional services with the district then they have to pay for the additional staff to support it. Now often special education students will bring in a bit more money per days in their seat than a normal student. However, many of these systems have been in place for a long time and have not adapted for inflation so what they need vs. what they get is not comparable. Now schools are often rated based on their test scores which can also determine funding. So it becomes a tug of war game. It might become profitable for them to spend lots of money to boost special education children if it raises the average on their testing scores. A school that specializes in or has a high demographic of special education students can hurt the score. If they have enough they can cover it with grants but if they don’t then they will be out money to help that they are unlikely to see returned.
- Admitting failure is costly. My son was transferred to a nonpublic school after a bunch of school transfers. For several months he basically took a cab back and forth 30 minutes a day to school. If you have ever taken a ride in a cab you can just imagine that cost. Then they have to pay for the tuition. If they can they are going to hold onto your child because it is a significant loss to let them go.
- Pushing for your rights can hurt you. If you feel your child needs special placement fighting for it can hurt. You have a few avenues. Giving up on the system entirely there is the homeschool option. For some students this is better but in most cases it isn’t because they need to learn social skills. If you choose to pull your child out of school yourself expect to pay for it yourself. There are some public electronic schools that use district funds but you teach at home such as K-12. You can kiss any full time job goodbye though. Some parents choose to put there kids in private school and charge the district. First, you have to pay upfront out of pocket and the district can fight you if they feel your child could have been served within the school district. Expect paying out of pocket, potential legal issues and you might lose. Some schools have the option to move the child to a different school in the district. If you request it and the district doesn’t back you then they do not have to cover transportation.
- Better scoring schools do not mean better schools. One of the most diverse and amazing schools in our district has the lowest score. Many of the parents bought into the idea that better scoring schools where better and transferred their kids. So at the amazing school there are a lot of low income families and minorities. The more parents transferred the lower the scores got because low income frequently have troubles with academics. They also have a higher population of special needs students. What they are is receptive and they work hard to help the students. One of the worst schools in the district is one of the best scoring! I transferred my son there though this was due to location and carpooling rather than score based. The school had a high population of wealthy families and tons of extra curricular activities. Except for a bully problem the school is amazing for a neurotypical child. My son tried to run off campus multiple times because he wanted to “come home and be with mom mom.” Since I was in school in the afternoons a friend would pick up her and my son from the school. Running was a huge issue with him so the school requested that she pick up the boys in the office. Due to a lack of parking if you pick up your kids you have to park across the street. She requested special parking privileges and the principle basically told her no. I was there (and since she was the one picking them up I let her handle it) and she said “I am concerned about having to take a child who is prone to running across a busy street.” The principles response was to the effect of “I don’t know what to tell you it is what you have to do.” Fortunately my friend can be b*tchy and manipulative. She drove right up to the pick up line, moved the blockade that is up before school hours and drove up. When maintanance saw her and challenged her she stated “I need to pick up a special needs child from the school office.” She got her way because she did not give the school a choice. Other problems happened at that school and if I had the skills to cope with it at the time I would have sued. I went in with a fever and was told about his behavior and started to cry. The special education teacher turned to my son and said “look at what you are doing to your mother” and I did not have the presence of mind until I lowered my fever to realize how abusive this statement was. With the income level in that part of the district I got the feeling most parents with autistic children had them placed in private school out of pocket and this school had never had to deal with it before. It was a mess.
- Even good schools might be a bad placement. We ended up in a behavior intervention program in a special school. The teachers were amazing and trained well and we loved them to death. That said, my son got worse because it wasn’t the right fit for him and we cried when he had to leave.
- You are protected from extended expulsions. Your child can be expelled but not for long because they are protected because they have autism. If they try to expell your child for more than 10 days they have to prove it was because of something not related to their autism.
- In some cases your best option is to wait and suffer. My son was running off campus, not accessing the curriculum, and hurting people. It took multiple school changes to finally get him in a good school. I never had to pay anything out of pocket because I waited and suffered and since the school came to the determination that they could not service him they had to pay. You might be able to speed up this process if you vocalize your belief your child is not in good placement at IEP meetings. There are hidden costs, at the behavior intervention class the principle had to deal with my crying and when I appologized she said she was used to it. Often when parents got to that point they had already had to quit jobs or lost them because they were called into the school so often. I was lucky that I worked for the school district (hard for an employeer to fire you for not showing up when they are the same people calling you away). It hurt though and while money issues are looking on the up and up we will likely end up homeless between now and when the money comes in. (See my gofundme link at the bottom of this post). I wish I had an easier road to recommend but if you don’t have the funds and means to fight back there is little you can do.
- You can put conditions on transfers. The last school my son was sent to had a later start time and pick-up time would have been 10 minutes after I needed to be at work. I made signing the IEP contingent on finding a way to get him transportation that did not cause me to lose my job. In the end took him to work with me (20 minutes farther away) so they could pick him up before I had to start and still get him there in the approprate time phrame.
- Remember you do not have to sign the IEP. Schools will sometimes make it sound like what they recommend is what your child needs. This puts parents in the position of feeling guilty if they don’t sign. If you don’t understand it sign it later, take the time to think about it and don’t ever feel pressured to sign.
- If you fear for the safety of your child do not wait homeschool. Another friend thought her child was being abused at school. He would often come home hungry and she was concerned he was not getting the food she sent in. She walked into the classroom to see other students beating her childs head into the wall and the teacher did nothing. While she fought to get him removed she kept him out of school as long as she legally could but she had to send him back. Her child was nonverbal so he could not report what was happening for himself! When a hearing was done with the school board they took the word of the teacher over hers. She pulled him out to homeschool him. Collecting his things on the last day of school the teacher handed her a large trash bag, containing all the food she had sent in (and toward the end she started sending in junk food she knew he would not refuse just to make sure he ate). Even now the district tries to call her up and pressure her to put him back in public school (cause as I said your child is money). Not all places are equal. I am in a decent state for autism care and they messed up other places are far worse.
It is hard to see your child struggling and it is hard to know where to turn to get help. When your in the cycle of watching your child struggle it is easy to lose hope. There is light at the end of the tunnel and there are proper placements that will work but it is a process. The process can hurt, and even now with my son in proper placement my family is still struggling with the long term effects. However, you can get there if you are willing to stand your ground.
Feel free to share this blog with others! Here is the link to my gofundme page.