ABA and other intensive therapies

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Hi all. My name is Scott, I'm the father of a 4-year old moderate/severe boy with ASD. Many parents like me spend a lot of time talking to each other, researching, talking to therapists, etc. However, I think you folks here are the real experts. What are your feelings on intensive ABA and other therapies? My son does about 15 hours of ABA at a center per week, and about 12 hours of developmental preschool.

It isn't like he spends all day at a table, getting scolded for incorrect answers. That part doesn't really exist anymore. He more gets rewarded for good steps he takes. They break every action into small steps and he masters them as he goes. Now, some of this, as you can imagine, has resulted in somewhat scripted speech. If he is holding a block with the letter A, and you ask him if it is letter F, he'll reply "no, it's not F. It is A". The same every time. The hope is that he'll start to understand the concept of the whole thing, and add some flexibility to his answers as he better grasps language.

They've taught him to take off his shoes, put away his lunch box, taught him to be less aggressive towards peers. Powerful things that he really should know. I get it. I don't care if he's "normal." Functional, yes. Normal? I don't care. I know ABA has a reputation for trying to fit square kids into round holes. And I'll admit that is part of what he learns. He doesn't understand all the concepts, but responds to prompts in a robotic fashion in ways you would expect someone to respond.

Do you guys see value in something like this? Should I rather free him of this and let him spin and rotate his letters all day, because that is what comes natural to him? Have any of you benefited from intensive therapy? Do some of you loathe it?

My answer will be more general and maybe dated. I come from a generation where the idea of managing your kids 24/7 seems bizarre. On most days all that was required of me was to be home by dinner and complete my homework. That was pretty typical in the 1960's. By age 6 or 7 I was allowed to walk several blocks by myself something if a parent allowed today they would be arrested for. We were expected to figure out our own games and suffer negative consequences for our mistakes. I am not advocating going back to the 60's with its little or no special education, institutionalization for "mental defectives" and bullying was just boys being boys. But I do think we have gone way too far in the other direction and are raising kids too dependent, too fragile, and too eager to please the latter I fear especially from ABA no matter how positive. How can a kid find out who they are, what works and what does not for them if they are constantly managed? I am not advocating letting a kid do what he wants all day, damm anybody else but am advocating moderation. Behaviors that are harmful to himself or to others should not be accepted.

Everybody autistic or not is different, they will grow different rates and need different levels of guidance. Temple Grandin and John Elder Robison (best selling author, designed guiters for KISS) as kids were what they call severe today (numerous voilent outbursts, poo smearing, non verbal etc) and they turned after much difficulty alright sans ABA. Point is that Autistics are people who will mature albeit quite differently naturally.

Time to get off of my soapbox and get down to some particulars that I can not answer because I am not there.

Are the behavoirs bieng corrected truly harmful?

Is he bieng taught to be nice, respectful of others or to be conformist?

The fact that he is not bieng taught concepts is troubling to me but he is only 4 and maybe too young or ready for that, that is beyond my knowlege.

If possible have you asked how his day went at therapy?

ABA is considered the "gold standard" treatment for autism. If you do decide drop or lesson ABA you may very well be resisted by his school and his psychologists, told you are in denial of science and find difficulty getting insurance for other treatments. Those things might not happen, things vary greatly depending on where you live, your clinictions, but be prepared.

My view on ABA is that:

- If at all possible, the child should be consulted and their wishes should be completely respected.
- ABA should not be used to get rid of harmless behaviours or behaviours which are just embarrassing or inconvenient for other people.
- ABA can only be justified to get rid of/reduce the frequency of behaviours which cause immediate physical harm to the self or others, or to teach skills which other methods are not effective for.
- Whenever possible, other methods should be used. ABA is the last resort (although of course I am excluding even crazier practices like packing or bleach...).
- Aversives should never be used.
- There should never be "forced compliance" except in truly exceptional circumstances. Children should be taught that they can say "no".
- 15 hours a week is probably a good upper limit. Certainly the 40-hour "recommendation" is cruel.
- There is an urgent need for better regulation. Although there's a nice sounding code of conduct for BCBAs, in practice it seems that it isn't really enforced. I've found that many BCBAs will admit to breaching the code if you let them talk for long enough. 43% of BCBAs think it is acceptable to physically hurt a client.
- There is an urgent need for research into the long-term effects of ABA. There is presently very little, and none that looks at things which really matter, like health or happiness. We do not know whether the benefits of ABA outweigh the costs.
- Because provision is so patchy and regulation has failed, it is important that parents and carers are aware of just how their child is being treated, that ABA is not as scientifically supported and certainly not as necessary as proponents claim, and that they should pull their child out if they are not happy with it.

I don't see value in that scripted speech. I think you'd be better off having scripted speeches with real-life applications.

There are lots of testimonys from ABA survivors online. See here for a start.

If you love your son, you will get him out of there as swiftly as possible.

why? If you would expand on this, I would be thankful.

Thanks for all of your thoughts. You've given me a lot to think about.

I do want to be clear that the center he goes to is a very positive place. The therapists are all college-aged kids that are very enthusiastic about helping. His coordinator is a very bright gal that truly cares about what she's doing. I have zero doubts about these things. He's not being hurt physically or treated poorly, I am infinitely confident in those pieces. I also have access to his charts, so I can see what he works on every day.

Some of the behaviors they are working on are harmful. He's very aggressive towards children smaller than him. Nobody can figure it out, really. They think he does it for attention. I disagree. I think there is something about babies he doesn't like or makes him uncomfortable. Diet contributing, perhaps. He also stims a lot. Not that it is harmful, but it prevents him from learning and participating in other activities. They don't necessarily discourage stimming, but they teach him to get up and run and take breaks when he needs them, so when he has to sit and concentrate, he's more able to do so.

I ask him every single day how is day was. He hasn't yet answered. I can ask him yes or no questions, but not sure how truthful his answers are. "Did you have fun today, yes or no?" He usually answers yes. "Do you like Sholto (today's therapist)?" "Yes."

Some highlights of the things he has learned so far:

-self-advocacy - yes or no. It's a big deal. If he doesn't want to do something, he can say no, and as of right now, they'll honor the no every time. Now, there is some scripting here. He used to scream "nooooooooooo". Now he'll say "I don't want that." When he screams, they say "you can also say 'I dont wan't that'."

-greeting peers

-asking a peer to share an item (his first inclination is to hit them and take it)

-drawing in the lines (don't really care about this one)

-bathroom procedure and washing hands

-building block patterns

-pretend play (this is totally scripted. they play with a train track and he has to push the train around the track and make it stop, etc. If left alone, he would just roll the train across his stomach and watch the wheels. The hope here, again, is that he starts to enjoy playing with the train the right way, and will play with friends that way)

-vocabulary, including verbs, location words, identifying words.

-right now they are teaching him my name.

The thing I wrestle with, is that I don't to have him spend his whole day not being himself. I want him to be creative and comfortable and let him explore things his own way. That being said, I really have no idea how to teach him to acquire skills. I try, I'm just quite unsuccessful at it. Every day he comes home with something new that they've taught him to do, or a new response to a situation. That part is kind of cool, but not sure how essential it is.

Going to take a guess with the babies problem. It could be sensory sensitivities, he might be reacting to thier smells or how noisy they can be. Misbehaviors by Autistic people are very often mistaken for attention seeking when it is often sensory overload or frustration trying to communicate, poor ability to handle change or some combination of the above. Many of us autistic adults get accused of bieng attention seekers.

That he is allowed to say no is very good, the accusation of attention seeking without the appearent consideration of the other possibilities mentioned above shows a lack of knowledge of current understanding of causes of Autistic behavoir.

Does it work like that? I've always lacked imaginative play, I didn't have intervention (later diagnosis) but I didn't think that'd do anything - I thought that behaviour is the outward sign of lack of imagination and doing that will just make it present differently rather than giving the kid the imagination needed to play. Maybe I'm wrong, though, I obviously can't comment on what intervention can do since I've not had it.

I really don't know. I'm skeptical. But it's one of the parts I find interesting to watch.

Thanks for the reply! You might be right. My first thought was that he doesn't like the crying. They did a behavioral analysis and that's what they came up with, so we are going to treat it as an attention thing and see if he makes progress. They think he likes th e attention, even the scolding, so they don't scold him when he does it. They just ignore it and don't give him attention. So, I get some funny looks when I'm in public and he attacks a baby and I don't scold him for it.

The school district is supposedly doing their own analysis as well. We will see what they come up with.

What I'm hearing in the way you speak about his program, OP, is that it's an OK program for him, but it's unbalanced.

It's OK to spend part of the day learning this stuff. You seem confident that they aren't using the more abusive aspects of ABA. But they aren't encouraging his creativity. They aren't discovering ways in which he is comfortable connecting with other people. They aren't working on bringing your son's individual gifts to the surface. They are training him to be their kind of normal.

There's a certain amount of this that's fine. We all have to wash our hands after we use the bathroom. And it is rather handy to know when you are seeing an "F" and when you are seeing an "A." But that's not all that life is about. I hear you saying that you are worried that your son's program is unbalanced, and I have to agree, based on the little information we have here.

Not liking crying is a sensory issue. It is NOT an appeal for attention.

If he is having a sensory issue and you treat it like he is just looking for attention, you will scar the kid for life. Almost all of us grown-up autistics have stories like this. The grown-ups assume that we are looking for attention and completely miss the boat. The result is a break in trust, the damaging of our relationship to the teacher, and long term damage to our ability to trust that our needs can ever be met. It ain't worth it!

Doing a "behavior analysis" sounds all official and stuff, but I'm sorry, confirmation bias still exists. No one is completely scientific.

*my source - I am both a former special educator and an autistic person.

I think there is a very good chance people doing the analysis are not autistic. It is somewhat equivalent to white people making all of the decisions for an all black school. No matter how good the intentions are or how nice the white admistrators are avoidable mistakes will be made. In the example of the white administrators at a minority school while economic, social, and cultural backgrounds would be different at least the brain wiring would still be typical. These days there are usually black people having input in racial policies, LBGTQ people having input in decisions made for LBGTQ people, I believe this is pretty much true for physical disability decisions, this usually is not the case for autistics.

The upbringing of sons and daughters is supposed to be primarily the responsibility of their mother(s) and father(s). You cannot shelter him from reality all of his life (well, I suppose in this day and age, you could if you had enough money to blow for such a purpose). Eventually he will reach the adult age. Whilst most Spectrum-Types are typically Late-Bloomers, the emotional-development does need progress, but most if not all of the so-called medical-industry is absolutely clueless about helping one learn to control their thoughts/emotions from being disruptive.

When someone is attacking a baby, they need to be restrained, but refraining from «scolding» him is a correct course of action, except you also simultaneously need to be educating and explaining to him to not do such things, and that it would only bring harm to himself to inflict harm upon others (because karma is a real b***h don't-cha-know).

You can think of it like a form of de-programming the negative-behaviours. The way I have had to discipline these whipper-snappers, without inflicting any scolding nor punishment upon them, was to simply hold up their arm with my hand around their forearm near the wrist for whichever hand I was holding, and simply not let them go anywhere until they would stop trying to act destructively. Case-in-Point : Around a decade an a half ago, a little boy of a large family (whom I was staying with at the time as a somewhat semi-adopted family member due to being somewhat orphaned) was the type who would be all hyper-active, and grabbing pepples/stones and throwing them everywhere, including at everyone's cars, repeatedly.

I had to restrain him from causing scratches and other potentially bigger damages to everyone's automobiles, but it had to be done in such a manner so as to not inflict any kind of violence or punishment upon him (one of the things that I despise most of all in the world is when mothers or fathers are abusive to their sons or daughters), and he must have tried to drop to the ground to grab more stones/rocks to throw at cars at least a couple dozen times before I could finally walk around with him peacefully without him trying to cause trouble. I am quite certain that I probably would have married into that family (to an extremely beautiful-looking Ukrainian girl at that) if I wasn't in such a condition of being in a psychological-wreck myself (largely due to the constant abuse by legal-guardians/parents all of my life up until that year then again after I had split ways with my former surrogate-family due to various other external-pressures).

Anyway, not to digress, NON-punitive education-and-rehabilitation is the KEY towards a peaceful society.

Thanks. We do educate all the time, just not while it is happening. If he is doing it for attention, giving him the attention of explaining to him why we don't hit is exactly the reason he is doing it for.

That's a solid point. They do tend to see things only through their professional glasses.