There are re-occurring themes among the Autism/Autistic online worlds. The most current is, “You can’t understand because you’re high-functioning/have Asperger’s.” It comes and goes when parents of Autistic kids insult Autism because of their child’s difficulties.
I’ve wanted to rebut this several times and often do when getting into a comment exchange on other blogs.
- No. I am not like your kid because I’m an adult.
- No, I am not where I’m at because my parents helped me. I didn’t receive any Special Education or 504s or anything.
- Actually, when I went to college, this is where I found that I couldn’t even stand on my own two feet.
- I have had to have several years of therapy and medication, much thanks to my husband, to overcome my previous years.
- For YEARS, I couldn’t even do household chores from that much anxiety and stress that had built up.
- Yes, I do know what it’s like to have a child that doesn’t speak.
- Daniel didn’t speak until 4.5 yrs.
- Daniel’s speech is sometimes even now unintelligible by ME, and most of the time from those who do not interact with him on a daily basis.
- It can take Daniel up to 2 min to form a 6 word sentence. This is greatly down in the past year since getting his iPad.
- Yes, I know what it’s like to have a child that is still has to wear a pull-up.
- Despite being a 2E child, Stephen is not fully potty trained.
- I’m not sure he even feels it.
- He will be 7 in just over a month.
- Yes, I know what it’s like to have a child who elopes.
- The first week after we moved back to Texas, Daniel escaped from the house and walked to the grocery store around the corner.
- Daniel WILL run away from you and every other adult without paying attention to what’s in front of him.
- He has nearly been hit by a car several times.
- We now take precautions.
- No, just because I believe in Autism Acceptance doesn’t mean I refuse to get help for my kids.
- Both boys have IEPs.
- Both boys had early intervention.
- Both boys continued with OT, ST, and Daniel PT after aging out of EI.
- Daniel has had ABA to deal with dangerous behaviors.
- Stephen has had DIR/floortime to help with his imaginative play skills.
- No, we no longer do therapies outside the school directed by a professional. (I decided at some point, kids need to be kids, no matter their disability.)
- Yes, both of my children are on medications. One for ADHD, the other for sleep and calming issues.
- Yes, I do know what it’s like to not sleep at night because my child is awake all night.
- Yes, I know what it’s like to be AFRAID of my child because he’s become that violent.
- Yes, I know that all we want is what’s best for our kids.
- That does not mean I will chelate them.
- …cure them.
- …destroy their sense of self by removing all traces of Autism.
- …destroy their self-esteem by saying their reactions to things are wrong.
- …drug them to control their behaviors.
- Yes, I know what it feels like to watch my child bang his head so hard that he could cause permenant damage.
Here’s what I don’t know… I don’t know why this would make me hate Autism. I was so thankful to know what it was. What was causing my children not to speak. What was causing them distress and unrest. I was happy to know there was something I could do. That’s what the Autism label is to me. An answer to “what’s going on.”
What I do know is that there is no amount of hate of Autism that will make your child better. There is no amount of vitriol put into treating your child that will not radiate to your child. There is nothing you can say that I have not been through myself, with one of my children, or have seen one of my friends go through.
What you’re going through may have different manifestations. What you’re dealing with at this second may have so much stress attached to it that it seems like there’s no end in sight. But you can get through it. You can accept your child from where they’re at. And once you do that, you can truly start to help your child because you’re not going to be forcing a round hole through a square peg.
Applied Behavior Analysis, better known as ABA, receives a lot of opinions, most of which I disagree with. I continue to see people either raving or condemning it. I’m often asked to explain to people “What’s wrong with ABA?”
I’m going to say this once more and direct people to this blog post when asked again. You are free to do the same. There is nothing wrong with ABA. This is my personal opinion and does not necessarily reflect the views of any organization I am a part of, will be a part of, or have been a part of.
Does this mean I think ABA should be used on every Autistic? NO! Does this mean I think people who practice ABA (usually BCBAs and BCABAs) do no harm? NO! Does this mean I think ABA should never be used? NO!
Three examples:
Example 1: Daniel was around 4 when we started using ABA with him. His behavior? “Property destruction” was the formal label. The cause? He was either climbing to reach something or he was showing his disapproval for being told no. One day, when he was climbing, he knocked over a 250 lb TV and fell to the ground with it barely missing his leg. He did this again and barely missed crushing his body. To me, and any other person, this was a life threatening behavior. Other times, he’d clean off countertops in one swift arm motion which also caused bodily harm. These are not “acceptable” behavior in people’s minds.
We chose to use ABA because we did want this behavior modified as reasoning was not working. Logic was not working. Pre-empting him every second of the day was unachievable.
We did not use aversives. We only used rewards based on non-destructive behaviors. We successfully ended the behaviors. And then we stopped using ABA. If people disagree with what we did, that’s their own choice, but I did not want to hear from the bathroom a thud, a scream and then have to call an ambulance because my child had crushed his ribs or been punctured with glass.
Example 2: Judge Rotenberg Center is the best extreme for this example. As some of you may have learned. They use Electric Shock treatment to curb behaviors of their “patients.” They are not allowed to do this with new patients, thankfully. However, this form of aversive therapy is a most notable part of some ABA therapies. Using aversives during the course of the behavior is supposed to make the behaviors stop when coupled with rewards. I could go in depth with this, but I think most people can see how evil this is. It’s conditioning based on torture. Many of these acts we aren’t even allowed to perform on detainees!
Example 3: I watched a video at a parent meeting one night. A BCBA was trying to stop a behavior in an 8 yr old child. (This was open to the public, but I will not be using names.) The behavior? Over-excitement and flapping when first interacting with her friends. She sat with the girl and the girl’s two best friends. She explained the behavior that was “undesirable” and asked one friend of she liked it when the girl did this behavior. “No. I can’t stand it.” Asked the other friend, “Well, it’s not that bad.” The therapist asked “What if she did it everyday every time she saw you?” The little girl not knowing any better responded, “Well, no, I wouldn’t like that.”
Was this behavior hurting anyone? Honestly, no. One friend obviously didn’t show tolerance, but it wasn’t hurting her.
When asked about the consequences of being told that her behavior was wrong, the therapist didn’t seem to think there would/could be significant consequences. When pressed about the issue, the therapist said “Well, she’s going to have anxiety problems either way.”
When questioned about how this is appropriate to do when it’s not hurting anyone. It was just about being socially acceptable based on the parents’ opinions.
This is where the difference lies. I’ve been told, “Well, parents have that right.” Obviously, they do. They also seem to have the right to subject their children to dangerous chelation therapy. Or to put their child through HBOT which can cause oxygen poisoning.
To me, if we aren’t allowed to tell the parents what to do, surely, we should be able to ask BCBAs to be ETHICAL. Medical ethics say primum non nocere (Do no harm). BCBAs are not medical professionals. They don’t have to go to medical school. But they are paid as medical professionals very often by insurance.
There is nothing wrong with ABA. The problem is the lack of ETHICS within practitioners. They are not required Ethics as part of their training. There are no standards about how ABA is practiced by the BACB (Behavior Analysist Certification Board). The problem is not looking at the long term affects and what is actually harming their clients.
(It doesn’t hurt to also train the peers too if you’re talking social skills.)
