Article about ABA therapy (for autism)

[Lecka]

https://www.aapcautismbooks.com/blogs/blog/the-confusing-controversy-around-applied-behavior-analysis?omnisendAttributionID=email_campaign_5fb8178ec5e84a3fc93db000&omnisendContactID=5ddd9e8dbac16e78d43d0e34&utm_campaign=campaign%3A+ABA+blog+post+(5fb8178ec5e84a3fc93db000)&utm_medium=email&utm_source=omnisend
 

This connected with me!

[Drama Llama]

I didn't read the whole article, and my feelings on ABA are complex.  But the article gives the following list of who a parent should talk to before arranging ABA to their child.

• Speak to parents who have autistic children that are CURRENTLY in an ABA program
• Speak to CURRENT Board Certified Behavior Analysts
• Speak to CURRENT Registered Behavior Technicians
• Request a tour of an ABA Center in your area

This list clearly excludes the following

Any parent or professional who has selected another model of intervention.

Any parent or professional who has left ABA due to concerns about what they experienced.

Any individual who has experienced ABA.

The vast majority of teenagers and adults with ASD (unless they happen to also be ABA professionals or parents whose kid is getting ABA)

That kind of bubble is extremely dangerous in my opinion.  No parent should be making decisions, particularly decisions about things that are controversial, in such a bubble.  

[Lecka]

It doesn’t say “don’t talk to parents who chose another form of intervention.”

It doesn’t say “don’t hear from people who have concerns.”

I think hearing from both has a lot going for it.  
 

I don’t think it would be good to hear only from mega-fans OR only from people with deep concerns, personally.

 

[Lecka]

My son learned life-changing communication skills — I would challenge anybody to say it was a bad idea in our circumstance, especially given where we lived and what our insurance would cover.  
 

We tried some very child-centered speech therapy and OT and they just could not get anything done, the speech therapist could not get anything done with him whatsoever, and he continually tried to jump off the top of the little slide or throw balls out of the ball pit at OT.

That was literally the only other option we had!  
 

They were not equipped to teach him any communication skills whatsoever, and he began requesting in ABA.  
 

I think it’s dangerous to stay in something ineffective while kids continue to have serious behavior challenges and lack of ability to communicate because of hearing some horror stories about ABA.

I feel just personally this way.

But definitely it’s not the right fit for everyone!

But neither is whatever speech/OT maybe available wherever people might happen to live. 

[Lecka]

Our insurance covered speech, OT, and ABA and nothing else — so besides availability, affordability would also be a major issue for us.  

Literally my son could not request a drink of water and then learned this skill — so I think it’s not really fair to say it is a dangerous bubble.

Is it better to leave him unable to ask for a drink of water?

Seriously I think this is something that is possible to happen when people are scared away from a major option.  

[Lecka]

I saw another boy very similar to my son who started being able to request drinks of water when he was starting 2nd grade — after starting ABA — and my son had learned when he was in pre-school.  
 

It’s pretty sad to me when a child has an extra two-three years of life of not being able to ask for a drink of water.

 

Everything is different for different kids — but I do think it’s dangerous also to scare parents away from something that could make a big different in their lives.  

[PeterPan]

https://www.aapcautismbooks.com/blogs/blog/the-confusing-controversy-around-applied-behavior-analysis  Here's a clean link to the article without the FB tracking stuff.

6 hours ago, BaseballandHockey said:

That kind of bubble is extremely dangerous in my opinion.

Fwiw I'll point out a few things.

-It appears to be written by a mom/blogger, not a professional, ie. it's a from the trenches guest blog post, not even protrayed as professional. She's coming from a parent/advocate perspective.

-The site it's on (AAPC) is SOLID, SOLID, SOLID. This is one of the BEST publishers of stuff for higher functioning (and not so high) spectrum kids, and some of the BIGGEST NAMES are publishing and selling with them. Ruth Aspy has stuff there. I've perused their tables at conventions (where they sell like crazy btw, selling out everything at their booth) and Every Single Item has been something I would want or find useful. They're often books presenting what was given as a workshop at OCALICON. This is not a random, fly by night blogging kind of place.

-She is attempting to *balance* out the bizarre, idiotic, uninformed, misleading, misrepresentative advice we are sometimes given (as parents with a new spectrum diagnosis) so that we can at least JUDGE FOR OURSELVES.

I got some of that blanket "ABA is horrible, don't do ABA, his IQ is too high for ABA, don't send him to xyz school because they do ABA" on and on. Well my stinking lands! All that did was DISCONNECT us from where THE BEST AND APPROPRIATE INTERVENTIONS ARE. So fine, there are things here and there that are good. and I agree, you should not DTT the life out of a kid. Yes, my ds will turn to a robot if you do it to excess. But does that mean I'm "not doing ABA" when I use ABA/DTT methodology and do it myself? Does that mean I'm not doing ABA if I am informed about the developmental issues and go back and fill those holes?

No, all that blanket "ABA is bad" advice did was slow me down so that I missed windows of opportunity for easy intervention. They threw me into the stupid, uninformed, undertrained, underprepared (yes) SLP system that also wasn't going to help.

6 hours ago, BaseballandHockey said:

• Speak to parents who have autistic children that are CURRENTLY in an ABA program
• Speak to CURRENT Board Certified Behavior Analysts
• Speak to CURRENT Registered Behavior Technicians
• Request a tour of an ABA Center in your area

I agree with you, it's a bizarrely incomplete list. RBTs in our area are typically college kids working like little robots themselves for whatever the BCBA says to do. They're opinions are WORTHLESS. Actually they're worse than worthless, because they may not have enough experience and training to really know what they're seeing but they THINK they know what they're seeing. 

******

My son is so excited and happy each day when I drop him off at his ABA center, and he is equally enthusiastic when I pick him up to tell me what fun things he has done. 

*****

I snipped this to put her back in context. Her dc appears to be *preschool* age. One of the challenges in the homeschool community is that we are asking for services that would have typically gotten done in preschool that got MISSED because we were homeschooling. We're looking at ABA services when our dc are in elementary or junior high. It's hard even to find a BCBA ready to handle that.

And OF COURSE her dc is having fun!! He's receiving preschool services and he appears to have no co-morbid mental health, etc. issues. That doesn't mean my ds would have had the same experience. My ds had significant apraxia and issues that needed MUCH MORE complex intervention than what an ABA preschool could have provided. He would have had a HORRIBLE experience or shut down. He had a lot more going on and still does.

 It's one of the extreme weaknesses of the system, that care is so broken up. The ONLY care that is even close to trying umbrella and cover all the modalities is the BCBA. But you aren't getting that $100+ an hour person all day long. You get them once a week and you get a $15 an hour person who works for a service billing the state at $50-65 an hour. And that person CANNOT HANDLE MY DS. 

So we'll let the author of this blog post grow up, watch her kid grow, and see how her perspective changes. I'm glad straight ABA and trusting the institutional system is working for her. That's REALLY what she's saying. There are kids for whom it won't be ENOUGH.

One of our diagnosing psychs said emphatically NOT to do ABA with him, not to enroll him in an autism school, etc. A couple years later, ironically, we had a psych say to do 30+ hours a week of ABA with him, haha. But I think the first guy meant straight ABA and the 2nd meant more umbrella, getting INTERACTION up. My ds *eats up* interaction. He will take every ounce of high quality interaction someone will give him, and it makes him blossom. So if someone wants to say he needs 30 hours a week, I agree! But then I've had stupidity, like a BCBA (I kid you not) who said just bring an ipad with his favorite apps and he'll withhold it till ds complies. I'm like dude, you are an idiot and have NO CLUE how to interact with him and engage.

We've had people work him in a way that zoned him out, like a robot. We've done the same methodology just right and had it be great, where he blossomed. But the difference was how much we were *turning on* his awareness, his responsibility, his feedback, his ability to have power, his ability to use his language to self advocate.

I get a LOT of compliments on my ds in most situations. We just went kayaking and the guide was very complimentary about ds. He's just a complex cookie. I personally don't think ABA can deal with all his behaviors, because some are chemical. And I don't think chemistry/psychiatry is the ideal solution to all his behaviors, because then he'll have those side effects to deal with. I don't think sensory or speech are the full answers either. That's what I was saying about the parceling. They pick things and say THIS is what you need. I'm putting my money on him improving in self awareness (which is working!!) so that he can SELF ADVOCATE for his mental health. 

Nuts, you wanna get really wild? I'm beginning to teach him to do his own FBA! Why should I FBA and why should someone else?? HE needs to understand his body and realize why he's doing things and problem solve for himself. I should make touch cards, just like what we're doing for interoception, so he can figure out what his reason is for his behavior. That could be really powerful. Are practitioners doing this? Beats me. I will say though that's the advice our behaviorist (old school, umbrella, not a BCBA) gave us. She said that the magic would be as all the good instruction came together with maturity and he could begin to do it FOR HIMSELF. 

So I think it's easy to see why something could backfire for one person and not another, why it could be very practitioner dependent. Forming an opinion about an intervention like ABA by talking with one place is just ridiculous, because you're being limited to the thought process of that person. I have not been impressed with ANY of the BCBAs I've talked with. I think there are some out there I would be impressed with, people who'd be ready to work with my ds. I just haven't met them. And the ones I have haven't. As in they heard the situation and realized they couldn't handle it. They will admit they're looking for a certain demographic (lower IQ, lower elementary academic goals). This is not stuff this mom blogger is sharing. 

So generic article, generic, enthusiastic advice from someone newer to the process, trying to counterbalance other things she's heard. She'll probably be wrong for some people. For others she'll be right. Nuts, maybe if we had done 30 hours of ABA and put him in an institutional setting to get it, we'd be singing the praises too. 

[PeterPan]

1 hour ago, Lecka said:

It’s pretty sad to me when a child has an extra two-three years of life of not being able to ask for a drink of water.

We all have our things. I've spent years pissed about SLPs not caring about speech as much as I do or not prioritizing it or getting trained in the effective techniques. I had a supposed expert who told me "communication" was good enough. Then I fought for him to have his Rs, all his Rs, perfect Rs in every position, when they said I should give up and that the stinking Rs DON'T MATTER because sounding like you have a Boston accent is "good enough." I kid you not, I was told this by multiple SLPs!!! Clearly did not listen and he now has beautiful Rs btw.

And a little irony, if I had put the funding into the autism school, he wouldn't have his speech. They are incompletely trained at one school and not at all at the others, and they would have put him on AAC. ABA is not a solution for apraxia but the ABA based school would have eaten up the funding. So I get pissy about that in the autism community, that everything is about ABA and compliance and not really about the potential for what they could do if they had MORE interventions. 

So I think, like you say, this is where we as parents fight for what we think is most important. And hopefully it turns out to be enough that they have good lives, sigh. 

[kbutton]

5 hours ago, Lecka said:

Everything is different for different kids — but I do think it’s dangerous also to scare parents away from something that could make a big different in their lives.  

Yes! Just like we say about meds for ADHD. 

4 hours ago, PeterPan said:

One of the challenges in the homeschool community is that we are asking for services that would have typically gotten done in preschool that got MISSED because we were homeschooling. We're looking at ABA services when our dc are in elementary or junior high. It's hard even to find a BCBA ready to handle that.

Well, my son would've been missed anyway--he was in two different preschool/school settings, and he masked too well, melted down at home, etc. Tons of people who worked with him at church were experienced classroom teachers and wouldn't have pegged him as on the spectrum. 

We could've used ABA language stuff when he was in preschool though. I think he would've eaten it up. 

By the time, we had a BCBA on board, we were using that specialty to teach social skills more than anything, but they were able to work well with him because they understood behaviors and could make suggestions. Once I learned what ABA is, I realized that most of the things that worked as parenting techniques were very, very close to ABA things and involved helping him understand his own reactions. The first time I heard the term extinction burst, I knew exactly what it meant, lol! 

I agree that most kids are going to need a variety of services, and ABA is likely only one of those.

[PeterPan]

21 minutes ago, kbutton said:

melted down at home

I finally read an article that has a term for this! "after school restraint collapse"

https://difflearn.com/blogs/http-blog-difflearn-com/after-school-restraint-collapse-what-happens-when-school-is-at-home

[Cake and Pi]

I also have complex feelings on ABA. I'm wary of unconditionally recommending it as a therapy because I think it can be done poorly and/or for the wrong reasons, but I wouldn't ever blanket condemn it either. I think that part of the problem is that ABA is a fair bit more complex and far-reaching than the vast majority of people realize. It really can be a tool used for good or evil IMO. 

I'm in some autism-led groups where they are vehemently against all forms of ABA. If a new parent comes in asking questions and mentions that they use, used, or even thought about using ABA, that parent gets chewed up, partially digested, and disdainfully regurgitated by the group.

The thing is though, these same outspoken folks go on to recommend strategies that are actually used in ABA. They just don't know that ABA involves such techniques because they've securely shut and locked the ABA door. They don't realize that ABA techniques are literally everywhere in society. ABA just turned it into a science.

But seriously...

I went to Starbucks on Thursday because it was double-star day, yeah! I collected double the stars for my purchase, which I will accumulate until I have enough to redeem for a free drink. Positive primary reinforcement for a behavior Starbucks would like to increase (me making purchases at their stores) and token economy = ABA.

My husband got a hefty speeding ticket last week. Positive punishment by the government intended to decrease an undesirable behavior (speeding) = ABA

If there is chocolate in the house, I simply cannot resist eating it. I can seriously subsist on nothing but one of those 4-pound jars of Peanut M&Ms for 3-4 days until I run out. I want to be healthier, though, and have decided to drastically decrease my chocolate consumption. So, to set myself up for success, I've told my DH not to buy any chocolate when he goes shopping. Environmental antecedent strategy = ABA

A friend of mine likes to gamble. Even though they are netting negative, they win just often enough that they enjoy it and keep going back. Variable ratio schedule of positive reinforcement used to increase or maintain gambling behavior = ABA

DH worries about missing work for the kids' medical/therapeutic appointments, but sometimes I simply can't manage alone and have to ask him for help. To lessen his stress over it, I put the appointment in his Google Calendar and then I remind him that I'll need his help a week beforehand, 3-4 days beforehand, and again the evening before the appointment. Priming = ABA

I got tired of seeing ads in YouTube. They're seriously irritating. Now I pay a monthly fee so I can have YouTube ad-free, and I love it! Negative reinforcement used to increase the likelihood that I will maintain a behavior YouTube desires (me paying them!) = ABA

A good friend got tired of me never answering my phone when she (or anyone else, really) called. I explained that I don't usually have pockets and sometimes my phone is in a different room when she calls, so she bought me one of those necklace-type wearable bluetooth headsets so I could easily answer calls without searching out my phone. Decrease response effort strategy intended to increase a desired behavior (me answering when my friend calls) = ABA

And I could go on and on. Once you spend some time learning about what all ABA entails, you see it EVERYWHERE, especially in marketing and business. It's not just for autism. It's used on neurotypicals and adults everyday without the vast majority being any the wiser. Anything that changes or maintains a behavior ultimately boils down to ABA.

[kbutton]

10 hours ago, Cake and Pi said:

Once you spend some time learning about what all ABA entails, you see it EVERYWHERE, especially in marketing and business. It's not just for autism. It's used on neurotypicals and adults everyday without the vast majority being any the wiser. Anything that changes or maintains a behavior ultimately boils down to ABA.

Our BCBA always said this too. She said she ABAs everyone she knows, lol! 

[Mrs. Tharp]

It's maybe more accurate to say that behavior modification has been around for a long time, and that ABA is a particularly distilled form of it targeted at disabled people. I disagree with the notion that the people are none the wiser. IME, people know. I have three individuals with EF issues in my house, and while they often don't comment, they always realize what I'm doing when I prime, reinforce, reward, or punish.

You're citing things like frequent buyer programs and speeding fines. Perhaps the difference is in the degree of autonomy involved for the person whose behavior is being modified. Are you choosing to participate? If you say no, will that decision be respected? When behavior modification techniques are abused, either the goals are inappropriate and/or boundaries are being violated. The vulnerability of the disabled make them particularly prone to this kind of abuse.

This is not to say that I'm totally against ABA. I think it can be beneficial, but that parents need to go in with their eyes open. A lot depends on the individual doing the work--and as it's such a profitable field, caveat emptor for sure. And the premise of manipulating people through rewards and punishments to get them to do what I want has always struck me as ethically problematic when it's not absolutely necessary.

Here's some food for thought from Alfie Kohn: https://www.alfiekohn.org/article/behavior/

 

Here's another by Kohn about ABA and Autism: https://www.alfiekohn.org/blogs/autism/

 

 

 

 

Edited November 28, 2020 by Mrs. Tharp

[wendyroo]

51 minutes ago, Mrs. Tharp said:

It's maybe more accurate to say that behavior modification has been around for a long time, and that ABA is a particularly distilled form of it targeted at disabled people. I disagree with the notion that the people are none the wiser. IME, people know. I have three individuals with EF issues in my house, and while they often don't comment, they always realize what I'm doing when I prime, reinforce, reward, or punish.

You're citing things like frequent buyer programs and speeding fines. Perhaps the difference is in the degree of autonomy involved for the person whose behavior is being modified. Are you choosing to participate? If you say no, will that decision be respected? When behavior modification techniques are abused, either the goals are inappropriate and/or boundaries are being violated. The vulnerability of the disabled make them particularly prone to this kind of abuse.

This is not to say that I'm totally against ABA. I think it can be beneficial, but that parents need to go in with their eyes open. A lot depends on the individual doing the work--and as it's such a profitable field, caveat emptor for sure. And the premise of manipulating people through rewards and punishments to get them to do what I want has always struck me as ethically problematic when it's not absolutely necessary.

Here's some food for thought from Alfie Kohn: https://www.alfiekohn.org/article/behavior/

 

Here's another by Kohn about ABA and Autism: https://www.alfiekohn.org/blogs/autism/

For what it is worth, my 9 year old autistic son has been receiving ABA therapy for a year now, and it looks nothing like Alfie Kohn describes it in the second article you linked:

"Enter ABA: an intensive training regimen consisting of an elaborate system of rewards to make children comply with external directives, to memorize and engage in very specific behaviors. An expert promises to train the child to make eye contact or point at an object on command, to stop fluttering his hands or rocking — in short, to make him act like a normal kid."

For us, there is no elaborate system of rewards and no memorized specific behaviors. There have been no attempts to force my son to make eye contact or stop rocking or pacing (his preferred stims).

For us, ABA is all about natural limits and consequences and having someone one on one with Elliot who can devote 100% of their attention to consistently enforcing the limits and consequences no matter how long they have to persevere.

So, ABA is at our house during snack when Elliot vehemently objects to the book I have chosen to read (because he wants a different one). His therapist tries to remind him about all the lessons they've done on flexible thinking, on proposing compromises, on thinking of alternative plans, on emotional regulation and using his calming tools. When that all fails and Elliot starts throwing food and drinks all over the room and threatening his siblings, his therapist physically restricts him to that room so I can evacuate the other children. While Elliot rampages and tantrums and is aggressively violent and destructive for hours, his therapist can supervise him while I care for the other kids and everything else that needs to be done. And when Elliot finally calms down, his therapist can be the one to stand firm and require him to clean up the mess that he made.

The other quote of Alfie Kohn that does not ring true for us is:

"ABA does not exist to do what’s best for the children themselves, to meet their needs and honor their preferences. Its goal is to extinguish behaviors that make the people around them uncomfortable."

Our ABA most certainly does not aim to change Elliot so as to make those around him comfortable...unless by "comfortable" he means "less violently and abusively beaten up". Myself, Elliot's BCBA and his therapists are in constant discussion about what is best for Elliot and how to meet his needs. We do try to take his preferences into account, but realistically it does not matter if he "prefers" to kick holes in walls and yank out the electrical wires; it is not safe and we must stop him. Requiring a minimal amount of school work and chores, working on flexible thinking, executive function, and emotional regulation, not allowing him to hit and kick others, insisting that he clean up after himself in age-appropriate ways, teaching and enforcing basic hygiene standards...those are all in his best interest. To me, letting those things go because they are not his preferences would be doing him a severe disservice and would not be meeting his long-term needs...or addressing the immediate physical and psychological safety needs of the rest of the family.

[Not_a_Number]

4 hours ago, Mrs. Tharp said:

And the premise of manipulating people through rewards and punishments to get them to do what I want has always struck me as ethically problematic when it's not absolutely necessary.

2 hours ago, wendyroo said:

To me, letting those things go because they are not his preferences would be doing him a severe disservice and would not be meeting his long-term needs...or addressing the immediate physical and psychological safety needs of the rest of the family.

And that's the crux of the matter, isn't it... sometimes, what WE want is, in fact, what someone needs to be able to function in society, and what THEY want is not. I spend a LOT of time telling my kids to do what I want, because I happen to know what's expected from them in society a lot better than they do. I'm sure they don't want to be polite, or clean up after themselves, for example. But part of being a parent is being a civilizing influence on your kids, and it's obviously MUCH harder with some kids than others. (I know you have a more difficult job than most people, Wendy. It sounds like the ABA therapist has been helpful for you.) 

[Mrs. Tharp]

I hear you, but I stand by the articles I posted. There are alternative methods out there, but as always, everyone needs to do what they feel is best for their own family.

Edited November 28, 2020 by Mrs. Tharp

[Not_a_Number]

Just now, Mrs. Tharp said:

I hear you, but I stand by the articles I posted. There are alternative methods out there, but as always, everyone needs to do what they feel is best for their own family.

Her kiddo is very difficult. I would not at this point suggest they shop around, personally, if they have something that works in any way. 

[Mrs. Tharp]

Not a Number, why are you escalating this?

[Not_a_Number]

Just now, Mrs. Tharp said:

Not a Number, why are you escalating this?

I am really not trying to escalate this 🙂. I thought you might not know how much they've struggled, that's all. I have all the empathy for their family and would personally really hesitate to make ANY suggestions, because I have not been in anything like their shoes. 

But if you already knew the entire back story, then never mind 🙂 . I have nothing to contribute in that case. 

[Mrs. Tharp]

Well,  I do have a child with autism. I know personally know people in her shoes right now and I have been there myself. I understand why she is sticking with ABA, but that doesn't change what ABA fundamentally is, unfortunately.  I did communicate, pointedly, that she should do what is best for her family, and in my earlier post, that ABA can be beneficial for some kids, so I fail to see the implication that I was somehow judging her situation. Physical safety is a major issue.

[wendyroo]

16 minutes ago, Mrs. Tharp said:

I hear you, but I stand by the articles I posted. There are alternative methods out there, but as always, everyone needs to do what they feel is best for their own family.

But "There are alternative methods out there, but as always, everyone needs to do what they feel is best for their own family." is not at all what those articles that you stand by say. The second article you posted, in fact, said, "ABA by its very nature makes care transactional and leads children to infer that they’re worthwhile only when they do what is demanded of them. This message is toxic regardless of whether it succeeds at (temporarily) buying the desired behavior." That is not a statement of "caveat emptor, this might not be the right approach for every child". That is a message that ABA by its very nature is toxic, inhumane and bullying.

A quote at the end of the article, by a former ABA patient stood out to me. He said, "knowing that I had no way out of a repeat of the torment again and again for what felt like it would be the rest of my life, was traumatizing to such a degree that I still carry emotional scars decades later. It doesn’t matter whether the perpetrator is a therapist, a teacher, a parent, or an age-peer: bullying is bullying." I agree, bullying is bullying...but in our case, the biggest bully is Elliot himself.

It is the rest of the family that feels there is no way out of repeated torment. It is the rest of the family that is showing more and more signs of being emotionally traumatized. Our house is filled with screaming and tantrumming for hours everyday. We can never be near Elliot without worrying about our safety. I can never let Elliot out of my reach for fear that he will hurt one of his siblings. We cannot go anywhere as a family because of Elliot's violence. Nothing in our home is safe...no book, no favorite lovey, no photograph or instrument or pet. The other children have to abandon what they are doing immediately on a daily basis to be evacuated to a safe area. And they know from experience that whatever they were working on or playing with will probably have been destroyed by hurricane Elliot when they are allowed to return.

And even dealing with that difficult of a situation, even being incredibly desperate for any help available, I would still never allow Elliot to be treated in a toxic, inhumane, bullying way. I am intimately involved in his ABA plan and process, and not one bit of it makes me even a little morally uncomfortable. They are treating him exactly the same way I treat my toddlers when I tell them that I cannot let them stand up in the bathtub, and that if they do so again they will have to come out...and then I follow through to help them learn to keep themselves safe. Elliot does not know how to keep himself safe, and his many, many mental illnesses make learning those skills a long and difficult process. But I really, really do not want to end up visiting Elliot in jail or the morgue. At the age of 8, Elliot screamed at a police officer who told him to put his sandals on or he would have to be carried to the ambulance. Elliot then kicked his sandals directly in the officer's face. Would the outcome have been different if he were wielding a weapon (which he has done) instead of footwear? What about if he had been 18 instead of 8?

I would never say that ABA is the right choice for every child or every family. But I would also never stand by one-sided articles that wholly condemn a widely-lauded, nuanced therapy practiced by tens of thousands of practitioners. I could write an article condemning the barbarity of cutting out half of a child's brain, and I'm betting it would read pretty compellingly...and yet, parents opt for hemispherectomies for their epileptic children every year, not because they are inhumane bullies, but because they love their children enough to make the unimaginably difficult choices as to what is best for them, even knowing that no matter what they choose, they or their children may end up regretting the choice in the future.

[Not_a_Number]

I don't even know what reaction to put on your post, Wendy. I'm so sorry you go through that on a day to day basis. Thank you for explaining why the one-sided articles are simply not helpful for people struggling with impossible choices. 

It's damned if you do, damned if you don't. You have all my sympathy. 

[PeterPan]

16 minutes ago, wendyroo said:

his many, many mental illnesses make learning those skills a long and difficult process.

Ok, I'm sorta in the trenches with you, though maybe my ds isn't quite as violent. But keeping him out of jail is a #1 thing we talk about with providers and really no joke.

So with that said, I'll say just observationally that ABA's starting point is that it's behavioral and treated behaviorally, when reality is part of it's chemical. Hard to treat and I know you've done that. I'm with you there. So to me the fact that it's so hard underscores how under powered, under researched, under knowing our psychiatry system is. 

I also agree with someone who said ages ago that it's really unfair for someone who had the behaviors to look back and say their treatment was inhumane when THEY were not on the receiving end of their behaviors and the family was. People are only doing the best they know how.

5 hours ago, Mrs. Tharp said:

And the premise of manipulating people through rewards and punishments to get them to do what I want has always struck me as ethically problematic when it's not absolutely necessary.

We do understand that ABA, or what is done by a behaviorist/BCBA, is broader than behavior and motivators, right? And that they both look for what motivates the dc AND to move that to a non-physical, more mature motivator as the dc is ready. So my ds turned out to be QUITE motivated by social. It's a great thing!! Literally the pleasure of *being together* is motivating to him. Playing a game together, having shared interaction. So staying at tokens or food or whatever would have been inappropriate, and we moved on pretty quickly. We seldom use reward charts, etc. 

If someone is lucky, their person is trained in more systems and bringing more to the table (ABA umbrella vs. pure). However in our area, what I find is there are a lot of BCBAs, freshly minted, with way too little experience. They don't have broad understanding and they don't have experience. They could never work with my ds. They're being cranked out of online programs with the lure of high pay and ready jobs. Doesn't mean they're gems or people with broad experience to bring a lot to the table. 

So "ABA" will reflect the person you're working with too. 

29 minutes ago, wendyroo said:

I would still never allow Elliot to be treated in a toxic, inhumane, bullying way. I am intimately involved in his ABA plan and process, and not one bit of it makes me even a little morally uncomfortable.

Yup, this is the same thing I said when we had workers in our home. What eventually happened was he was outthinking them and needed a higher paygrade of person. That's a real issue. So we were getting behaviors because he was bored because the workers weren't prepared to keep up with him. But then what, Mom sends away everyone else to work with him? That's very hard stuff. 

 

1 hour ago, Mrs. Tharp said:

There are alternative methods out there,

Thing is, once they get past the early years, most of the intervention goes into the school system. So if you're not in the school system working with their team, who is doing your autism specific stuff? Around here, to get it privately, what you want an SLP? I get so tired of SLPs thinking they know everything about autism. That is under powered too. And there are businesses, but a lot of them are incomplete too, offering PIECES. Floortime is great, RDI is great, etc., but those are pieces.

So I don't know, long term there are so many issues you're sorting out. Behaviors, but also work, transition, estate planning, lots of things you need help with. That for us was a hard thing, figuring out who the person was (what specialist) to help with this or that and realizing that by not getting ABA we were suddenly thrown into the B team and doing some of those skills and interventions late.

[wendyroo]

50 minutes ago, PeterPan said:

So with that said, I'll say just observationally that ABA's starting point is that it's behavioral and treated behaviorally, when reality is part of it's chemical. Hard to treat and I know you've done that. I'm with you there.

Oh, definitely, Elliot's behavioral issues are largely based in brain chemistry. He is currently on 6 psychotropic medications and over the years has been on over a dozen others. We are pumping this kid full of way more drugs than I am comfortable with.

But the current situation, while a significant improvement over a year ago, is still not safe or sustainable. So he qualifies for a Medicaid Severe Emotional Disturbance waiver which covers ABA and behavioral therapy and recreational therapy and occupational therapy and psychiatric care and wraparound care.

Even though the basis of the behaviors is chemical, medication alone is simply not enough, so to achieve the best outcomes for him we have to approach the issues from all angles.

[Drama Llama]

4 hours ago, wendyroo said:

Oh, definitely, Elliot's behavioral issues are largely based in brain chemistry. He is currently on 6 psychotropic medications and over the years has been on over a dozen others. We are pumping this kid full of way more drugs than I am comfortable with.

But the current situation, while a significant improvement over a year ago, is still not safe or sustainable. So he qualifies for a Medicaid Severe Emotional Disturbance waiver which covers ABA and behavioral therapy and recreational therapy and occupational therapy and psychiatric care and wraparound care.

Even though the basis of the behaviors is chemical, medication alone is simply not enough, so to achieve the best outcomes for him we have to approach the issues from all angles.

I think that a lot of people expect that cause should match treatment, but it really doesn't work that way, in my experience.  My kid was the opposite of yours.  His emotional issues were 100% caused by trauma.  But he still needed a complicated mix of behavioral techniques at home, therapy, and medication.  

I also wanted to be clear that I'm not anti-ABA, or pro-ABA.  I believe pretty strongly that parents need to research options, and know their own kid and make careful choices.  And I think that it's important that that research includes listening to and honoring the voices of autistic adults, because I think that learning from them is critical. I think that even if a parent chooses ABA, understanding why people have concerns and what those concerns are can help parents make more nuanced choices as to providers, and goals, and other things.  

[PeterPan]

https://autismlevelup.com/when-words-fail/  This link is from two OTs (one on the spectrum) who are big in the autism community. They have two pdfs you can download that show a chart contrasting how different methods/schools of thought would approach the same situations. It might make clear *why* there are beefs in the autism community. And these are not voices in the "you traumatized me by doing xyz" thing. They're literally just saying were there more perspectives, were there more options, if there were what could they be and how could we step UP the game. Hence their "level up" approach. 

 

[Not_a_Number]

3 hours ago, PeterPan said:

https://autismlevelup.com/when-words-fail/  This link is from two OTs (one on the spectrum) who are big in the autism community. They have two pdfs you can download that show a chart contrasting how different methods/schools of thought would approach the same situations. It might make clear *why* there are beefs in the autism community. And these are not voices in the "you traumatized me by doing xyz" thing. They're literally just saying were there more perspectives, were there more options, if there were what could they be and how could we step UP the game. Hence their "level up" approach. 

I don't know; this all seems oversimplified to me. 

I don't have an autistic child, but I do have gifted kids with very specific needs. So that's the perspective I'm coming from, for the record.

I'm HUGE on figuring out what's going on inside a kid and trying to meet those needs before I attempt behavior modification. So, for example, I was always absolutely militant about the kids getting enough sleep, because the difference in their behavior with enough sleep and without is night and day. It never occurred to me to punish kids for being cranky when they don't sleep enough, because there's an underlying cause. 

Similarly, the cause of misbehavior can be boredom, information presented at the wrong level, boring information, etc. I've always tackled those first. 

That being said... sometimes you DO need behavior modification. Sometimes, a kid is just being snotty because they can be, and the only way to reduce it is to disincentivize the snottiness. I've had the best luck with DD8 when I charge her money out of her allowance for certain "undesirable" behaviors. And that punishment is absolutely helpful for HER, because it helps her curtail behaviors that aren't productive for her as well as are not productive for anyone else. 

As @Cake and Pi usefully pointed, it's not the case that we all manage to do "the right thing" without incentives. Sometimes, incentives (both positive and negative) are important. 

Now, if behavioral modification is the sum total of your interaction with that kid as a PERSON, you have a problem. But if you include those strategies in a wide array of interactions, then I can absolutely see how they can be helpful. 

For the record, by the way, some of the activists I've known who are extremely against ABA didn't even have ABA as kids. It's now such a political statement to be against ABA that voices of other people get pretty drowned out. Most people aren't activists, and most people aren't politically active. So it's very hard to get a balanced perspective... do we have an idea of how autistic adults feel about ABA on average? Is there polling or SOMETHING to give a representative point of view? 

[wendyroo]

14 minutes ago, Not_a_Number said:

1:

I'm HUGE on figuring out what's going on inside a kid and trying to meet those needs before I attempt behavior modification. So, for example, I was always absolutely militant about the kids getting enough sleep, because the difference in their behavior with enough sleep and without is night and day. It never occurred to me to punish kids for being cranky when they don't sleep enough, because there's an underlying cause. 

Similarly, the cause of misbehavior can be boredom, information presented at the wrong level, boring information, etc. I've always tackled those first. 

2:

That being said... sometimes you DO need behavior modification. Sometimes, a kid is just being snotty because they can be, and the only way to reduce it is to disincentivize the snottiness. I've had the best luck with DD8 when I charge her money out of her allowance for certain "undesirable" behaviors. And that punishment is absolutely helpful for HER, because it helps her curtail behaviors that aren't productive for her as well as are not productive for anyone else. 

As @Cake and Pi usefully pointed, it's not the case that we all manage to do "the right thing" without incentives. Sometimes, incentives (both positive and negative) are important. 

Now, if behavioral modification is the sum total of your interaction with that kid as a PERSON, you have a problem. But if you include those strategies in a wide array of interactions, then I can absolutely see how they can be helpful. 

3:

For the record, by the way, some of the activists I've known who are extremely against ABA didn't even have ABA as kids. It's now such a political statement to be against ABA that voices of other people get pretty drowned out. Most people aren't activists, and most people aren't politically active. So it's very hard to get a balanced perspective... do we have an idea of how autistic adults feel about ABA on average? Is there polling or SOMETHING to give a representative point of view? 

Point 1:
I agree. I bend over backwards to set all my kids up for success. Ironically, some of that could come off as quite controlling on my part because I do regulate their bedtimes, meals, clothing choices, bathroom breaks, etc in an effort to meet their physical needs when they do not have the regulation to do so themselves. If I know that Elliot is getting cranky partly because he needs to go to the bathroom and hasn't realized it, and I try to insist or incentivize a bathroom trip to head off a tantrum, perhaps with a when-then such as "as soon as you go to the bathroom then you can take your break", I'm firmly in "bullying" ABA behavior modification territory. So do critics really want me to 1) not hold him accountable for his behavior (even behavior that severely impacts those around him) when there are physical causes and also 2) leave it completely up to him as to whether we alleviate a completely fixable physical cause?

Point 2:
Yep. About a year ago Spencer got into a horrible habit of interrupting. It was impolite, unfair to the other members of the family, negatively impacting the other kids' educations, and causing a lot of daily stress and strife in the household. I think on some level he wanted to stop, he didn't want everyone to constantly be annoyed with him, but he just couldn't figure out how. So I posted a chart on the fridge. Every single time he interrupted I simply went to the chart and X'ed out a box on that day's row. During dinner, if he had a lot of Xes, it wasn't mentioned at all. But if he had a small number, or even simply a smaller number than the day before, we congratulated him and the whole family gave a round of applause - authentic applause, we really were appreciative of his efforts toward a more pleasant household environment. That was it, there was no bigger incentive, but by the end of 2 weeks, he had curtailed his interrupting to only a couple times a day. Of course, Spencer, though not neurotypical, is far more so than Elliot. Spencer needs a little bit of data and a little bit of incentive. Elliot needs a lot more...more than I can provide which is where ABA comes in.

Point 3:
I've always wondered about this. It is also incredibly hard for any of us to judge the value of our experiences versus the path not taken. An autistic adult who is a critic of their ABA experience can't actually know how their outcome would have looked without ABA. I can imagine a future Elliot railing on me for letting the ABA therapists barricade him in his room as a child, but since I can clearly see an alternate path that starts with not confining him to his room and results in him throwing his little sister down the stairs, breaking her neck, and living the rest of his life as a murderer...well, I have to balance whatever he might see as the flaws of ABA, with all the other, much worse, outcomes which might have been if not for ABA. There is simply no way to know.

[PeterPan]

25 minutes ago, wendyroo said:

I try to insist or incentivize a bathroom trip to head off a tantrum, perhaps with a when-then such as "as soon as you go to the bathroom then you can take your break", I'm firmly in "bullying" ABA behavior modification territory. So do critics really want me to 1) not hold him accountable for his behavior (even behavior that severely impacts those around him) when there are physical causes and also 2) leave it completely up to him as to whether we alleviate a completely fixable physical cause?

Or option 3-- interoception work? I totally agree with you that scheduling, making it happen, etc. is necessary where he's at. If you think he's ready, someone could take him through the interoception curriculum to see if he might get a breakthrough on that where he could begin to do it for himself. It might happen. 

See that's the other thing I think also gets considered, is what part of ABA is preparing them to receiving instruction to take over for themselves (ie. stabilizing the situation) vs. what is meant to be long term, LONG term. Like I talked with someone thinking about how to handle their early/mid-20s, support level 1 dc who works a job but lives at home. They were thinking about home placements and wanted a placement that used ABA methodology, complete with motivators, to get them to do things the parents thought ought to happen. (leisure, chores for the community, health eating, etc.) I think at some point the individual could REVOLT against that and say he has the RIGHT not to do those things! 

That's something people legitimately discuss, what are your rights as a person with a disability, how you want to be treated, etc. 

25 minutes ago, wendyroo said:

During dinner, if he had a lot of Xes, it wasn't mentioned at all. But if he had a small number, or even simply a smaller number than the day before, we congratulated him and the whole family gave a round of applause - authentic applause, we really were appreciative of his efforts toward a more pleasant household environment. That was it, there was no bigger incentive, but by the end of 2 weeks, he had curtailed his interrupting to only a couple times a day.

That's really interesting. And it's such a good point that the goal there is connecting cause and effect, helping them see, helping them make better choices. When we had workers in our home, there was a lot of pragmatism, a lot of what do we need to do that makes xyz (academic goals, etc.) happen. It's an additional thing to make a HOME work well. In fact, it seems like a big issue, that school solves school and then you still have to deal with HOME and what it means to live peaceably at home. I really admire the energy you're putting into that. It's making me question if I'm on track thinking hard about our home like that, hmm.

25 minutes ago, wendyroo said:

I've always wondered about this. It is also incredibly hard for any of us to judge the value of our experiences versus the path not taken. An autistic adult who is a critic of their ABA experience can't actually know how their outcome would have looked without ABA.

Yup. And it's passing the buck or denying what a sincere PAIN IN THE BUTT they probably were and how VERY HARD their behaviors were to deal with. Because if they grappled with how hard their behaviors probably were (rather than blameshifting), they wouldn't gripe at anything their parents did but would understand. But that's asking perspective taking when perspective taking isn't their strength.

Edited November 29, 2020 by PeterPan

[PeterPan]

1 hour ago, Not_a_Number said:

I don't have an autistic child, but I do have gifted kids with very specific needs. So that's the perspective I'm coming from, for the record.

Humor me. 

https://www.socialthinking.com/Articles?name=social-thinking-social-communication-profile

1 hour ago, Not_a_Number said:

Now, if behavioral modification is the sum total of your interaction with that kid as a PERSON, you have a problem.

Ok, I'm still confused why you're beating this horse, but I'm just gonna say politely you have NO CLUE, absolutely no clue, what you're talking about.

A person with autism has a developmental delay. There's more, with metabolics, etc., and the amount of the delay and what areas are affected vary. So you might meet someone with a subtle 1.5 years or a more dramatic 2.5-3 years (my ds) or even a really dramatic 5+ years delay. But it's called a DEVELOPMENTAL disability, because it affects development.

So there are things about *cause/effect* that are DEVELOPMENTAL. This means the dc, even as an infant, is developing their sense of the order of the world, how things work, and literal cause effect. It's why you play PEEKABOO and why peekaboo is FUNNY to the dc! They do it at a stage, they laugh, they figure out what it was meant to teach, they outgrow it. 

But to dc with developmental delays, these lessons did not happen, did not click, did not integrate into their operating rules of how their world is ordered. Or they got learned in one situation but ISOLATED and not generalized! So they figured out it's true in this game or tv show or situation but never generalized it to the rest of life.

So... if you haven't quite pieced this together yet, ABA and behavioralism is MEETING THE KIDS WHERE THEY ARE. It's saying stop use language that goes over their head and making assumptions that go over their head and finally MEET THE DC WHERE HE IS.

It's that simple. That's what I learned. I had heard all this crap about how we treat our kids like dogs and our dogs like kids. It's stupid. We have to meet people where they are developmentally.

If your dc didn't need that, awesome. And for someone whose dc does, it's amazing. It's why the kids start going FORWARD and grow and blossom and progress. The methods are willing to back up to meet exactly what the dc can understand. You fill in the holes. 

You have to meet people where they are and with what they can understand. You grow it as they grow. NO ONE is holding back using lower developmental strategies if they can move forward! EVERYONE naturally moves up. But it does squat nothing to throw things (information, data, strategies, demands) that they are not ready to grasp for themselves and understand and apply.

We did some of the restraint and sequestering Wendyroo is describing. Those were dark days. Btdt. Don't want to be there ever again. But I can't fathom what in the world I would have done differently given the knowledge I had, and I can't say I wouldn't use that tool again if it were necessary. It's just he's bigger now, so it would involve getting checked into a hospital. We have a lot of other things built in place and we don't want to need that. 

But no, that's silly to say acting only with behavioralism would be inappropriate. For the right dc at the right stage of their development, it's exactly what you would do. You meet them WHERE THEY ARE. 

My pet peeves? The people who imply that they've talked with my kid for 15 minutes and they could do better. The people who imply that my dc's ability to do something for them for 15 minutes means he could do it ALL the time. 

People are such idiots. They have NO CLUE how hard we work to get enough click to get the great behaviors someone else sees for a while. They have NO CLUE the subtle, astonishing holes there are in understanding that lead to behaviors that are NOT MY FAULT. 

My ds, for instance, has very little sense of family as family. Family roles, nothing. To him, everyone is equal and anyone making demands is incredibly UNJUST and deserves a violent, justifiably angry reaction on his part. I kid you not. That's really hard to work with! These holes are hard to get through. And to calm down the chemistry, get into his brain, build up language, try to use language to help him understand what clearly DIDN'T develop in infancy like wth any other dc, it's incredibly hard!! 

You know what I read my ds when he was young? Like ages 6-8. I read him Revelation, like to put the FEAR OF GOD into him. Because he just did not understand the law, authority, NOTHING. Clearly the developmental clue phone did not get picked up!! LOL So I was like fine. God is sending everyone to hell who doesn't go his way, God wins, God is the biggest, whose side do you want to be on? And the behaviorist was like yes, teach him some absolutes. Because he was not getting the kinder, subtler ways you get there, lol. 

Whatever. I think that's the hardest thing, getting in his head. Too bad I don't know enough psychology to understand all this developmental stuff. I'm sure there are charts or something, how these concepts develop, so you could see what got glitched and pick back up. I've done it for language but not psychology, sigh. But when you ask what other people on the spectrum think of ABA or about their ABA, I don't give a rat's posterior about their take. Their view will grow/change with time and change in their perspectives. That link I provided from AutismUP is particularly good and WELL RESPECTED because the girl there who is on the spectrum has taken a lot of time to be very thoughtful and careful and analytical about her perspective. 

[Not_a_Number]

23 minutes ago, PeterPan said:

Ok, I'm still confused why you're beating this horse, but I'm just gonna say politely you have NO CLUE, absolutely no clue, what you're talking about.

Given that I mostly agree with you, I have no clue why you’re saying that. I’m coming at this from the perspective that many parents who do ABA are doing the right thing by their child and that ALSO some autistic advocates probably did have a bad experience that felt dehumanizing. 

Those aren’t contradictory. The world is all shades of gray.

[Lecka]

Behavior modification and behavioral analysis are actually not the same thing.

A lot of ABA is about trying to figure out what motivates a child, and what skills a child needs to learn.  So then it’s about figuring out how to understand a child and teaching a child skills.  
 

That is pretty different from behavior modification.  
 

But whatever!  If people have a problem with someone saying something was useful to them and it doesn’t hurt to check it out instead of rejecting it out of hand — what is the point of discussion.  

[Drama Llama]

Just now, Lecka said:

 

But whatever!  If people have a problem with someone saying something was useful to them and it doesn’t hurt to check it out instead of rejecting it out of hand — what is the point of discussion.  

I agree with this, but I don't see where someone has said this on this thread.

 

[Cake and Pi]

7 hours ago, Mrs. Tharp said:

It's maybe more accurate to say that behavior modification has been around for a long time, and that ABA is a particularly distilled form of it targeted at disabled people. I disagree with the notion that the people are none the wiser. IME, people know. I have three individuals with EF issues in my house, and while they often don't comment, they always realize what I'm doing when I prime, reinforce, reward, or punish.

Yep, ABA therapy is behavior modification turned into a science through the act of analysis.

I think that how aware a person is about their behavior being manipulated by others depends on the individual and the context. If a man takes out the trash and his wife thanks him for it, gives him a big ol' kiss, and he feels great about it afterward, he's probably going to be more likely to take the trash out the next time it's full. Does he realize that his wife's expressed appreciation is modifying his behavior? Does he feel manipulated? Should he? 

I would argue that all behavior in all mammals and humans, autistic or neurotypical, boils down to perceived reinforcements and punishments, whether they be internal or external. It's all just chemicals in the body and brain (dopamine, serotonin, endorphins, adrenaline, cortisol, etc.). ABA often contrives reinforcements (not usually punishments) for behaviors, but this is necessary for some individuals. Where most neurotypical people will organically learn expected behaviors "in the wild" through trial and error, autistic people may experience those same trials and errors without internalizing and/or generalizing the expected behaviors. In my mind this is very similar to targeted reading intervention for a child with dyslexia. A typical reader will learn to read no matter what program you use with them. There will be some trial and error, practice is necessary, but they'll get it "on time" without too much struggle. A dyslexic kid is not going to easily pick up reading the same way the typical reader will. They'll need extra time, extra practice, specific instructional techniques. And both the autistic child and the dyslexic child will very likely need continued accommodations and/or support after the intervention concludes. They're wired differently. It's part of who they are and isn't going away even if they work hard to do things typical people learn easily.

7 hours ago, Mrs. Tharp said:

You're citing things like frequent buyer programs and speeding fines. Perhaps the difference is in the degree of autonomy involved for the person whose behavior is being modified. Are you choosing to participate? If you say no, will that decision be respected? When behavior modification techniques are abused, either the goals are inappropriate and/or boundaries are being violated. The vulnerability of the disabled make them particularly prone to this kind of abuse.

I don't know. It seems to me that the degree of autonomy is similar in the context of behavior modification. The circumstances are just different because the general differences in expectations across age groups, and some things we have more ability to decline participation in than others. If my husband opts out of paying his speeding ticket, he'll be imprisoned, right? Involuntarily confined, choice about compliance overridden. I could choose not to be lured into Starbucks on double star day, but I *like* Starbucks and *want* double stars, so I often comply. Similarly, when one of my autistic kids is throwing chairs across the dining room and threatening to strangle his (also disabled) younger brother (because said younger brother won't stop verbally stimming), his choice about compliance is overridden. My other autistic kid could decide not to complete his school work, but he *likes* playing video games and *wants* me to log him into his computer once their done, so he often complies. 

Disabled people are vulnerable to abuse in all settings. ABA can be abusive. School can be abusive. Church can be abusive. Boy Scouts can be abusive. That's why parents must be ever vigilant, ever involved, and perpetually ready to step in and advocate for their children. We are the gate keepers responsible for ensuring that our children are safe and treated with dignity and respect to the greatest extent possible in all settings until they take over that job for themselves, if that's within their abilities.

7 hours ago, Mrs. Tharp said:

Here's another by Kohn about ABA and Autism: https://www.alfiekohn.org/blogs/autism/

 

Our ABA experience has looked nothing like that. Wendyroo's description is very similar to what we've had in our home. 

Our use of ABA isn't about making the NT people around my autistic kids feel more comfortable. What a waste of time and money. We have only ever targeted maladaptive behaviors, which limit and negatively impact the child himself; adaptive behaviors, to increase autonomy; and dangerous behaviors, from which the individual or other members of the household must be protected. There has never been any kind of attempt to make my neurodivergent children act neurotypical for the sake of seeming "normal." We don't discourage benign stimming or force eye contact. Really, this article is just feels so far off base it's absurd.

[Melissa in Australia]

I have done some ABIA therapy training so I would have some new tools to help me with my FASD twins . I found it particular helpful in being able to break up my "brain rewiring" attempts into smaller sized chunks  and to drastically increase  my use of positive and negative reinforcers.

the second helpful thing I got from the training was learning all that nomenclature

 

I know FASD is not autism but many professionals who have worked with my boys have told me that the parenting skills for extrema trauma and FASD is basically the same approach as working with an child with autism

Edited November 30, 2020 by Melissa in Australia

[chiguirre]

After almost 20 years of being an ABA parent, I think it's worth trying. Will it work for everyone? No. Is every ABA program well run and successful? No. Should you shop around as much as possible given the dearth of supply and interview your alternative providers? Yes.

I don't think GW would be able to live with us if he didn't have an ABA day program. He's 6'1" and 180 pounds of muscle. If he couldn't take care of basic selfcare, he's too big for me to help. If he couldn't express his preferences, he would be constantly frustrated. If he couldn't consistently keep his behavior in check when he's frustrated, he'd have to be restrained. All day. Everyday. If we hadn't found ABA, we would have cracked under the strain when he grew bigger than us. 

OTOH, Geezle was helped by ABA. But, he's been helped by other educational environments and treatments too. He uses some ABA techniques to calm himself but they're nowhere near as central to his life as ABA techniques are for GW. He remembers his ABA therapists with fondness but he was fine moving on to a more traditional classroom in middle school. I wouldn't be as grateful for ABA if he was my only spectrum kid. I'd have thought it was a nice addition to regular special education. 

If two kids in the same family with the same dx's can have such different experiences, I don't think it's possible to say whether ABA is the best alternative for a particular person or not without trying it out. It may be critical for a child's success, it may be a nice addition to SLT and OT, it may not add much to the mix, or the child might absolutely hate it. All of those are possible outcomes.

I would absolutely recommend giving ABA a try if your child is having violent tantrums. No guilt. None at all. People who criticize that choice have never had to face what it means to have to reinforce the door to your bedroom so your other kids have a safe space to bug out to when their sibling becomes violent. 

[bookbard]

I started out in Special Ed learning that ABA was the 'only thing' out there. It's still often touted as the 'only' evidence based intervention. 

I think if your therapist is talking about flexible thinking, they're at a different place from the ABA workers who focused entirely on discrete trial training. And I have worked with families whose children had done nothing in the early years BUT discrete trial training. The therapist chose a very small goal, broke it down, and shaped the child's behaviour until they could respond in the way the therapist decided.

There was no generalisation. There was no parent input. There was no real life functional skills. It was all 'point to red' and 'touch your nose'. 

It only took me one session of explaining visual supports to a family - then their child was able to get dressed for school in the morning. 8 years of dtt hadn't helped with that.

Relationship-based interventions such as floortime, RDI etc are often scoffed at, but they come from a place of observing the child and asking parents what their goals are. I am not a massive fan of floortime personally but I do know people who swear by it, and sonlight too - and I usually think that means they've found a therapist who is intelligent and adaptable and who cares about people.

ABA workers can be like that too - they've had a foundation of ABA training, to understand the basics, but they read, they learn, they listen, they take on board what the parent wants and they're able to be flexible. That's fantastic.

But it isn't the traditional Lovass ABA which was absolutely abusive and which still does go on.