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Hello,
I am new to this thread, so bear with me if this is a little long. My five year old son has recently been diagnosed as PDD/NOS after several years of "fighting" to get him a diagnosis. He is very verbal, but he has serious sensory issues and often goes into "trances" where he sings the same songs over and over. Long story short, he started therapy at a local clinic in our town two weeks ago. Not really understanding the specifics, only that it is "the only treatment" for ASD, we dove right in. Little clues along the way have made us nervous such as the clinic's reluctancy of letting parents enter the facility to drop of our son or pick him up - we must wait in the car for his therapist to come out and get him, not disclosing full details about the specifics regarding the therapy, not answering questions about the facility, etc.
Anyway, I haven't seen much change in our son as of yet, but I am concerned as some of the techniques I am learning about. First of all, they consistently tell us to ignore his side of the story and not to entertain it at all. The first day, he was restrained and put on "extinction" due to a melt-down he had over his shoes. Today, he had a sub and had a 40 minute meltdown again about his shoes. He was put on "extinction" and restrained again. I have NEVER had to restrain my son for any reason, so this seems very barbaric and disturbing to me. Today, he had visible marks on his arms and neck, with broken skin from the therapists nails on his arm.
I guess I want to know your experiences with this type of therapy. I am starting to feel like we made a big mistake with this. He tells us that he begs them to talk to him when he is on "extinction" and but they continue to ignore him until he calms down, then they continue it for another 5 minutes.
Any advice or experience is much appreciated!
This is bad *ABA,* imNsho. Change centers, please. Good ABA should not be using restraint. Good ABA uses rewards, not punishment nowadays. This center is using a very old method.
Also, my grandson was in ABA and parents (and grandparents) were welcome to observe. My dh often videotaped some sessions to get ideas for what worked and what we could do at home. Now, extinction works in terms of ignoring bad behavior, but you need to replace the behavior with something that works for the child.
Done CORRECTLY, there is nothing barbaric about ABA. If protocols are not applied consistently or correctly, all kinds of things can be wrong. We don't know what was going on in the therapy in the posted situation ( and probably won't, given the age of the thread).
People who are unfamiliar with the principles of behavior analysis may find extinction protocols to be extreme...this is because they are, by design. The purpose of complete refusal to attend to negative behavior is to teach that the negative behavior will not work for gaining attention, only appropriate behavior will. It works (if, in fact, the function of the behavior is to gain attention, which the therapist should have already analyzed prior to starting the extinction process). To some parents to whom this is not explained, it might look like "you are ignoring my child! That's awful!" when in fact, the therapist is simply not attending to tantrums, screaming, aggression, self injury, or other inappropriate behavior...not ignoring the child...and will reinforce appropriate behavior with attention and other reinforcement. The parent also might not realize that, through years of attending to inappropriate behavior, they have, in fact, been reinforcing it, and will continue to do so, even as the therapist attempts to extinguish it. This not being on the same page makes the changing of behavior harder and slower, because successful ABA requires consistent application. Parents can derail ABA if they don't understand it, which is why any therapeutic center should operate in complete transparency and educate families. Any that don't are suspect.
Of course, that only works *if* the behavior is intended to get attention. Often in autism, that is not the case. The behavior may have other causes - to get away from overwhelming sensory stimuli, for example, or to get out of doing a non-preferred activity. If an FBA is not done, you should not be using extinction protocols.
Also, the therapist should never be restraining a child in such a way as to cause injury.
This is bad *ABA,* imNsho. Change centers, please. Good ABA should not be using restraint. Good ABA uses rewards, not punishment nowadays. This center is using a very old method.
Also, my grandson was in ABA and parents (and grandparents) were welcome to observe. My dh often videotaped some sessions to get ideas for what worked and what we could do at home. Now, extinction works in terms of ignoring bad behavior, but you need to replace the behavior with something that works for the child.
I would hope, given the date of this thread, that the OP has long since resolved the situation.
That said, for the benefit of current readers, spot on.
Of course, that only works *if* the behavior is intended to get attention. Often in autism, that is not the case. The behavior may have other causes - to get away from overwhelming sensory stimuli, for example, or to get out of doing a non-preferred activity. If an FBA is not done, you should not be using extinction protocols.
Of course.
Nearly all maladaptive behavior is a result of either attentionseeking or task/stimulus avoidance, sometimes both concurrently. FBA is critical for ANY components of ABA or any behavioral therapy.
You can't effectively address ANY behavior until you understand why it is occurring. The downside is that sometimes, there simply isn't a way to know. I've had a few students where I strongly suspected that the maladaptive behavior was a response to being in physical pain, but due to extremely limited communication ability/zero verbal communication ability, without neurological testing, there was no way to confirm this. IMO, the behavior in those cases was much more likely to be attributed to attempting to communicate being in pain than any attention seeking or task avoidance, but there was no way for me, in my role, to confirm. It wasn't sensory stimuli that could be gotten away from, as it was occurring within the child's own body, but the behavioral response was to exhibit aggression toward whomever was in arm's reach, possibly to communicate distress. A neuropsych consult, monitoring pain centers in the brain during instances of the behavior, may have been able to confirm, but that wasn't within my scope. The result was that, with the tools at my disposal, the behavior wasn't able to be effectively addressed - the function couldn't be effectively determined, only hypothesized.
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Also, the therapist should never be restraining a child in such a way as to cause injury.
Absolutely. Any restraint should be applied only in instances where safety is of concern, and only by someone trained in safe restraint techniques. In the case of the abovementioned children, safe restraint was at times necessary. I couldn't allow a child, even one who seemed to be responding to experiencing extreme physical pain, to claw at whomever was nearest by, often another child, so some method of blocking and restraint was often necessary to keep the child and others safe.
Please do NOT let your son continue with ABA. It is abusive and basically suppresses all of the autism behaviors that let him regulate his nervous system. STIMMING is an autism behavior that is very important for us. It helps us blow off steam when we're uncomfortable or need to think. Suppressing that is like plugging up a volcano, it will eventually blow up into a meltdown, which is basically the brain puking from too much input.
ABA seeks to make a child look normal, it does not cure or help them handle their autism. Ask adults who went through ABA(I was diagnosed late and didn't, thank God!) and you'll hear stories that would blast your soul. People have PTSD from it. The fact that they tell you not to listen to your son's side is a huge red flag. They're probably using aversive and abusive therapy on him.
PLEASE, ABA and AUTISM SPEAKS are horrible and should be avoided. I suggest you look up the Autism Self-Advocacy Network instead.
ETA: Here's my autism-related playlist on Youtube, where I have vlogs talking specifically about certain aspects of autism that may help. Sometimes 'inside' info is better than what you hear from non-autistic 'experts'. https://www.youtube.com/playlist?lis...3A79AC5CB91B86
Please do NOT let your son continue with ABA. It is abusive and basically suppresses all of the autism behaviors that let him regulate his nervous system. STIMMING is an autism behavior that is very important for us. It helps us blow off steam when we're uncomfortable or need to think. Suppressing that is like plugging up a volcano, it will eventually blow up into a meltdown, which is basically the brain puking from too much input.
ABA seeks to make a child look normal, it does not cure or help them handle their autism. Ask adults who went through ABA(I was diagnosed late and didn't, thank God!) and you'll hear stories that would blast your soul. People have PTSD from it. The fact that they tell you not to listen to your son's side is a huge red flag. They're probably using aversive and abusive therapy on him.
PLEASE, ABA and AUTISM SPEAKS are horrible and should be avoided. I suggest you look up the Autism Self-Advocacy Network instead.
ETA: Here's my autism-related playlist on Youtube, where I have vlogs talking specifically about certain aspects of autism that may help. Sometimes 'inside' info is better than what you hear from non-autistic 'experts'. https://www.youtube.com/playlist?lis...3A79AC5CB91B86
I couldn't rep you again. But this is exactly why we do not do ABA with my son. Through our research we found that autistic adults overwhelmingly are against ABA.
Austism Speaks is clearly a hate organization. Their propaganda makes me see red.
We are teaching our son it's not just ok to be autistic but it's also ok to be proud of it. I always say he doesn't need anything but a presumption of competence.
I couldn't rep you again. But this is exactly why we do not do ABA with my son. Through our research we found that autistic adults overwhelmingly are against ABA.
Austism Speaks is clearly a hate organization. Their propaganda makes me see red.
We are teaching our son it's not just ok to be autistic but it's also ok to be proud of it. I always say he doesn't need anything but a presumption of competence.
Yes, but autistic adults who are high functioning and verbal don't know the standards that are currently in use. The ABA my grandson had taught him how to imitate gestures and how to play which he did not learn like typical children did. They did not suppress all *stims,* but did teach him how to actually attend and listen to his therapists and teachers. It was the therapy where he learned to speak, where he learned to play, where he learned academic and self-help skills.
Note that we did not use it exclusively, but turned to Floortime and RDI for help with social relationships.
I suspect that high functioning verbal autistic adults had less need of these things, but when you start with a child who is 18 months old with NO gestures, NO verbal language, NO imitation, never plays with any toys, doesn't point, etc., ABA is helpful. It can also be helpful for self-injury (my grandson never did that, but I know kids who do). No parent can watch a child self-harm without trying something.
Having successfully used ABA methodology to foster the acquisition of replacement behavior in children who are extremely self-injurious, I will respectfully disagree that the methodology is barbaric. If you've ever met a child with traumatic brain injury from self-stimulatory behavior that involves repeatedly banging one's own head (I have), or a person with a mass of twisted scar tissue up and down his or her arm and in the webbing between his or her thumb and forefinger because self-stimming involved years of biting one's self repeatedly during all waking hours (I have), it's had to argue that all stereotyped behavior is something that can safely be let go, because "that's just letting the person with autism be who he or she is, and who am I to intervene?" I've also known people with autism whose self-stimming involved things such as chronic masturbation, or a fixation on playing in one's own excrement (is this EVERY person with autism? No. But I'm just saying, it ain't all benign hand flaps and vocal tics, folks - most of the behavior ABA therapy is sought for is behavior that poses a real risk to the person or others). While such stimming/behavior may be amazingly soothing and important to the person, I'll use ABA as necessary to help the person find some replacement that's just as soothing, but without the obvious safety/hygiene/sanitation and social acceptability concerns.
Autism often presents with maladaptive behavior that is highly unsafe. Addressing this behavior is not abuse. ABA is one of the most well-researched and effective ways to replace unsafe behavior with safer behavior. Can it be applied incorrectly, by untrained or unethical personnel? Sure. Like anything. I definitely respect that there are those who have had bad experiences with practices that have been billed (often inaccurately) as ABA. That doesn't change my stance on appropriate use of ABA principles by trained professionals.
ABA doesn't "cure" autism, and doesn't seek to. Nothing does. What it does is provide a channel for responding to extreme, unsafe behavior. Looking at legitimate ABA as a barbaric means of tromping out a person's individuality is both knee-jerk and shortsighted, not to mention not an inaccurate view of what such therapies are intended for, which is primarily to curb unsafe behavior.
You'll get no arguments from me that Autism Speaks is a terrible organization, however.
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