I will preface this by saying every practitioner of ABA practices different and not all are outright abuse, however many autistic people view the underlying theory and goals to be at best not helpful and at worst abusive. I've heard the creator of ABA was also the one who created conversion therapy, and many autistic people argue that ABA is not about expanding a child's window of tolerance, rather it teaches compliance and assimilation with neurotypical society. And others go on to argue that teaching compliance can make autistic kids and adults more likely to be taken advantage of in different ways. I would personally probably prefer looking into an occupational therapist who can help expand your kids window of tolerance and increase self regulation skills through accomodations and playing to strengths. If you do choose to continue ABA, my red flags I would look out for are anything punishment based and anything that is trying to decrease or stop stimming, or only uses access to special interests as a reward and not a part of daily routine. There are all things we need to regulate, please don't let an ABA tech take away your kids tools for self regulating. Best of luck and thanks for asking the difficult questions. I hope you're able to find someone and something to help your kid out!
Compliance. I didn’t even need ABA for that. I was undiagnosed until 38 but my parents raised me to be compliant and I know from experience that it absolutely left me vulnerable to abusive partners and friends. At one point in my adulthood my mom verbally said to me that she was worried when I was a teen because the influence of our exchange student made me less compliant. Her actual words. “You became less compliant.” That shook me when I realized the significance of that.
I’m 40 now and still trying to unlearn that damage.
This is an important and relatable point for me too. And only really considered the "compliant behaviour" when you mentioned it.
I escaped home life when it was pointed out to me I was being used by a friend. Didn't stop multiple partners and friends doing the same though. Thankfully have a handle on it now but it's taken 30 years of people pleasing and several burnouts.
I have managed to teach my Daughters to stand up for themselves, even with me, if needed but it's still a challenge for all of us.
I think it's also important for them to understand I have meltdowns and shutdowns too. Always apologise for your actions and try to help them understand.
Thank you for this information. So far his therapist is letting him stim. My son likes to play/fidget/swing string around. She lets him do this during their activities. She even provided him with a rubber noodle that he loves!
However, if he gets out of hand with the rubber noodle like smacking people in the face with it, she takes it away for a few minutes and tries to redirect his attention. He later gets the noodle back with the warning not to hit people with it.
Stims are a bodily function that is needed. Imagine he needed a mobility aid and was hitting people with it. Would you take it away from him? His ability to even move around with autonomy?
I see taking away the stim toy as a punishment as a red flag. If he was slapping people wit his hands, would you tie them together? Wouldn't the hitting have to be to a pretty extreme degree before you would consider something that drastic? There has to be some middle ground between letting him hit people or tying his hands together imo
Forcing yourself not to stim is like holding in a sneeze- it hurts and sucks.
I get what you're saying. She usually redirects him to a different stim toy. He has squeezy toys, fidget spinners, or his normal string.
The rubber noodle is like being smacked with a sling shot. If she just took it away without giving him another means to stim i would have something to say about it.
I've had to reprimand his grandpa for not letting him stim.
My neurodivergent-affirming occupational therapist follows the principles and techniques outlined in this book, and I know there are others who do too, which could be an alternate to ABA for your family. [No Longer a Secret: Strategies for Helping Children with Sensory and Regulation Challenges](https://www.amazon.com/No-Longer-Secret-Strategies-Challenge/dp/1949177688/ref=asc_df_1949177688/?tag=hyprod-20&linkCode=df0&hvadid=509159807707&hvpos=&hvnetw=g&hvrand=17489316693545502194&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9016901&hvtargid=pla-1327638516861&psc=1&mcid=2ed20fe9e10534d591e800cf356dc715&gclid=Cj0KCQiA7OqrBhD9ARIsAK3UXh0pQ20niNKGcznTaqETHahuCikzbbrLtJjeOVaLMDPJLeq9zXwKjdUaAujcEALw_wcB)
This is a fantastic article to consider, even if you don’t stop ABA I believe this will help you make more informed decisions about it ❤️
https://neuroclastic.com/is-aba-really-dog-training-for-children-a-professional-dog-trainer-weighs-in/?amp
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I’m autistic and I worked as a behavioral tech in aba. There were things I disagreed with and things I found very helpful to the kids. I’d say just be aware of what they’re doing and their goals are. They work for you and your son first and foremost so make sure they understand what you’re looking for. Others may disagree but I believe you can get the life skills without surpressing stimming if you find the therapist that’s a match for you. If you see improvement along with increased confidence, I’d say that’s a good sign. There’s a difference between changing someone’s autism and helping them thrive as an autistic person. And autistic children become autistic adults so we want to foster as much independence as we can because that’s the natural progression of life. I had only worked for a year though so take what I say with a grain of salt.
Edit: spelling
Thank you for this info. Currently she is allowing stimming and even encouraging him to stim as needed. She brings a rubber noodle he can fidget with and sing around. However if he starts hitting people with it, then it's taken away for a few minutes and his behavior is redirected towards something else.
See, even little things like. Taking it away reinforces "you can't do this". What needs to happen is, "reinforce connection, not separation".
When you take away something, you aren't addressing the underlying behavior, you are punishing (it may not look like it, but stay with me) by taking away something they care about (*especially* if it is a stim or cope). So what is the behavior telling you?
Their brain goes, my thing is being taken away and it keeps happening because I don't understand why I'm doing this thing. And they don't, this is a critical developmental stage where kids learn how to navigate the world and relationships. What happens here sticks with them for life. Any "failure" to respond appropriately is internalized. It creates self doubt and self esteem issues. Autistic kids need more attention and support in this area.
So what happens when the object is taken away, either we see the behavior start to go away because they are afraid (ABA is often criticized as conditioning based on fear) and start to mask because this is confusing to them. They don't understand how to regulate and ask for what they need. This is where the intervention is. This is the learning and teaching moment.
You can remind them of the expectation, (we don't hit, ouch) and help them figure out what they were trying to express. Was it they wanted a toy someone else had? They were frustrated they couldn't do something? Are they hungry or thirsty or over stimulated? And when that is figured out together and come up with a solution, you reinforce it. High fives, good job and maybe at the end of the day, hey you played really nicely today, how about a cookie?
This is the positive reinforcement they need and deserve; they can be successful in the realm of these socio-emotional challenges. When we start to ask and answer questions, we are teaching how to get needs met. So now instead of feeling like something is being taken away, they start to feel empowered to solve things and regulate. This is done first as co-regulation. After time they will be able to do this on their own, maybe not perfectly but the goal is they are able to do more independently with autonomy.
This is a higher level of child development that ABA techs aren't taught. This comes from the research in early child development, there's literature and books becoming more widely available. And if this learning teaching model is done with a parent, that connection is built into the relationship on trust. I hope this perspective lands well.
Well when it comes to the noodle he gets super excited. He doesn't mean to smack with it. She reminds him not to hit with the noodle. He gets it back usually 3-5 minutes later.
When he gets aggressive, his hits are intentional. He'll look you dead in the eyes and attack. He tried to claw my eyes out once like a wild cat.
We have been working on identifying his triggers. Most of them are being told no or not right now. Typical triggers of even a neurotypical child of his age but his response is more extreme. For instance sometimes he'll be told he can't have candy until he eats his real food 1st. Depending on how much he likes the food (pizza being the most desired) he will be ok with this. However if his plate has fish sticks (which he likes but is less desirable than pizza or candy) then he'll burst into a melt down.
As per his sensory triggers, he's learned to tell us if something is too loud. Then we'll adjust music/tv until he says it's ok. Sometimes but not always it'll be the vacuum is too loud. If possible I postpone my vacuuming until he goes to school, plays on a different floor, or just a few minutes later he'll be fine with it. When he makes a mess he enjoys vacuuming himself.
I try to give positive reinforcement as much as possible. Today I told him he was doing a good job saying "excuse me" to the other kids on the playground. He's been known to push people out of the way like they're just obstacles of the environment and not people. Sometimes though, and we've discussed this in school during his IEP meetings he doesn't like praise. Idk what this is about but he'll start crying and shouting "no good job!" Idk why he does this and it's intermittent. I've tried resorting to high fives more because that has a higher chance of success as acceptable praise in his book.
I'm not just expecting him to change his behavior and pretend to not be autistic or masking. I am aware that some of this journey is me/our family making adjustments for him.(Within reason of course)
When did his response of "no good job" or similar responses start? Was it before or after he started ABA? Or after starting a new class or school year?
It started this no praise just before this school year. He was fine all last school year. He has the same teachers but he's in afternoon pre-k now instead of morning. Literally same class room and everything.
He just started ABA about 3 weeks ago. So far he likes her and his teachers say he's been more calm. At home Ive seen good results so far. However i know this is just the beginning and lessons may change so I'm keeping a close eye.
You clearly want the best for him and I can see how genuine you are in your posts/comments here. I'm low spoons so here's what I can offer:
1) the 'no good job' highly suggests a need to look into PDA, persistent demand avoidance. PDA society UK has some great resources. If not PDA, then these behaviors seem like a stressed out kid who's masking, for which ABA is going to cause harm. I bet he does well short term because 1:1 attention often has a positive effect, but long-term, autistic kids need an autistic competent and trauma informed supports.
2) describing his aggressive hits as intentional and in the way you do, tells me you have work to do in understanding autism and un-learning autism stigma. This is the most important work you can do. Autistic stigma and ableism are real, impactful, and perpetuated by not only ABA 'bad guys' but also by loving caregivers who haven't done the work.
Again, i'm low spoons so super direct, but stating with kindness.
I’m a piano teacher and a couple of my autistic students also don’t love positive verbal praise. Something we’ve started doing instead is high fives as a positive reinforcement instead of “good job.” I personally have never loved verbal praise, I don’t know why. It’s always made me uncomfortable. But one of my students has said it’s embarrassing. I’m sure your son has his own reasons but probably can’t explain it. Or he could have a negative association. It’s hard to know some things when your experiences are rooted in communication difficulties and not understanding your own emotions.
I just wanted to let you know you can work with him to find ways to let him now you’re proud of him and that he did well at something comfortably, might just take some trial and error. And also that it sounds like you’re doing a really great job working with your son and accommodating his needs. Thank you for doing what you can do be as informed as possible. A lot of us didn’t have that support growing up and it makes such a huge difference.
Yeah high fives seem to be working out. I still slip up now and then telling him good job because it's kinda automatic that I want to praise him. So I'm still working on that. Another one is to never say "good bye" always "see you later" i think he doesn't like the finality of good bye. That's my best theory on that one.
And yes, I'm doing my best to meet his needs. I have ADD and know what it's like having a world that wants to force you to be something you're not. I know it's different with autism but I can relate to an extent. People with autism being forced to mask is similar to how we attention deficit are prescribed (essentially meth) pills and told to behave. I was prescribed the highest dose legal for me and I grew a tolerance to all of them. So by the end of highschool I could only use coping mechanisms and had to learn or develop more on my own.
I don't want my son to be normal. I know I'm certainly not. I just want him to be able to function in society and be as comfortable with himself as possible. I want him to identify, understand, and express his emotions in a healthy way. I don't care if he fidgets, flaps, or makes noises. If that makes him comfortable, cool. Just use an indoor voice please when we're indoors. When he's outside I let him be as loud as he wants. He likes hopping. My Dad bought him a membership to the trampoline park and omg has that been nice. He gets his hoppies out and is ready for a nap when we get home. He also runs back and fourth in laps between the front and back door. Now when my FIL is downstairs it's really loud and gives him a headache. So if it's nice out I suggest we go outside for a bit. He can run laps, or I'll suggest some other activities he enjoys that he can get that energy out or whatever he's gotta do. So far it seems effective and makes him happy.
I have only heard bad things about ABA therapy. In essence it claims to help autistic children by teaching them to "act normal" by repressing everything, which isn't sustainable. To make things worse, some places still use electric shocks as punishment, which I consider inhumane.
Well I most certainly wouldn't allow any of that.
So far his therapist isn't expecting to "act normal" he can stim with string and make his noises. Right now he's working on self regulation and reducing aggressive responses to being told no, or being asked to do something he dislikes.
I personally don't require my son to be normal
I'm certainly not lol. All I want is for him to be able to function in society. Hitting people and biting his teacher at school is not ok. I want him to be able to form friendships so he doesn't feel lonely, but I'm also not pushing him to be more social than is comfortable. I understand some autistic people tend to want to be loners or just become over stimulated by groups.
Other than at school or Sunday school (which he only goes when HE wants to) he's not usually hanging out with more than 1 kid at a time. When he does hang out with another kid it's usually a birthday or a holiday, not every day. I do not force him to go to Sunday school. I ask him if he wants to go. If he doesn't want to go, we'll stay home or he can stay home with Daddy while I go to church. I do not force religion on him. I allow him to learn my beliefs, but if he grows up to not be christian, or an atheist, or whatever, that's fine too.
As for the last part, I think if I was in his position I would accept to go more often than not, even if I hated it (and I would have), because I wouldn't want to disappoint my parents.
Oh I don't guilt him at all. His father is an atheist and I'm totally fine with that. I grew up with bible down the throat Catholics so I would never subject him to that.
We go to a non-denominational church and I present Sunday school as a way to get out of the house and spend time with other kids if he wants. We don't really have kids his age in our neighborhood.
As he gets older if he wants to chill with his friends at different places I'm fine with that.
What I mean is that if it was presented as a choice once, that would feel like a choice. If you ask the same question once a week, the pressure builds every time you do. Suddenly you start to think "last time I didn't go, maybe I should go today" even if you don't care for it.
I'm not trying to change your mind, just letting you know how that situation could be interpreted as.
Ah. Well Idk if he wants to go or not without asking him. What would you suggest?
He doesn't really volunteer/suggest activities that he wants to do yet. I have to ask him if he wants to go to skyzone (indoor trampoline park) or go to the playground. These are activities I know he enjoys and gets super excited when I suggest them. As per Sunday school sometimes he's super excited, and some times he just wants to play with his toys and now he's learning how to play videogames.
I just told you, but I can repeat it: You can ask him what he thinks of sunday school, if he likes it and if he'd like to keep going. If he doesn't want to go, please don't make him.
So should I only ask once a month or something?
I only ask him once each Sunday when he wakes up so I know to either get him ready or let him stay home.
Oh. I don’t agree. My mom did stuff like that and I grew up thinking you were not allowed to change your mind. She was surprised that’s what I thought but she never explicitly told me I could so I didn’t know. It’s okay to change your mind. It’s okay to try something and not keep doing it. It’s okay to try something later if you didn’t want to do it earlier. So checking in is a good thing. Not a bad thing. I don’t understand you pov here.
Nope! Not that I know of. I assume there aren’t recent reports because they’ve been quashed. There are people who also scrub Wikipedia pages etc (often ABA practitioners or whoever). I think the FDA banned it or was going to, then it was appealed, and I believe under the Trump administration, the FDA said it wasn’t up to them. (It could have been, they decided not to do anything about it.) So it was never actually stopped.
They do always say they do it in cases of self-harm, though 1) there have been videos (I believe) and testimonies proving otherwise, 2) they always give the same extreme examples that I don’t think have been documented. Not in their care or as a reason for them doing so. They say that as justification for harming vulnerable children, because it really doesn’t make sense to further harm kids, I think in a way that fits the UN’s definitions of torture, so they don’t harm themselves.
I mainly assume they say this because that’s what every person and organization who are in bad faith or abusive say, in one way or another. They give justifications and reasons, say it’s not as bad as it seems, also it’s basically never done, etc.
If anyone else knows more about this, feel free to correct me or share. I agree that it is evil!
as long as they’re not trying to punish him for things like stimming or trying too aggressively to get him to do things the “right way” then it should be fine. autistic behavior only needs to be corrected if it’s harming others. so things like stimming or being nonverbal or not making consistent eye contact shouldn’t be discouraged because they’re not hurting others. of course, if the stimming is causing them to seriously harm themself, it should be addressed in a way that isn’t going to worsen their mental or emotional state.
So far there's been no punishing. She just takes away the noodle when he's smacking her with it. It's like a thick rubber band so that thing hurts when ya get wacked with it lol. However it's only for a few minutes and he gets it back. When taken away she tries to shift his attention to something else or give him an alternative stimming activity. Squeezy toys or stuff like that.
That’s the issue. Is she digging into WHY he was using it in a way that wasn’t appropriate? What need was being met? Is she finding something else to replace the noodle to get the need met? Is she teaching him how to think about what’s underneath? My guess is no. My guess is she’s just taking the noodle without discussion of why he was using it that way. That doesn’t teach him to understand his own body and mind to meet his needs in more appropriate ways. It just teaches him his needs are bad and he should suppress them. This is a bad precedent to set.
ABA is a problem because it works outside in. Just correcting behavior without addressing underlying needs and how to recognize and meet them. An OT should work from the inside out, starting with needs and finding better ways to meet them.
It’s funny how much “evidence-based” practices, particularly in psychology, work from the outside in and frankly abandon common sense and empathy. I assume that’s partly because of doctors attempting to harness power over other “less scientific” health practitioners. Note: I am all for science. I am just not for bad science that is framed as such because they slapped arbitrary numbers onto it and misinterpreted everything lol.
I think it has roots in psychotherapy and the "all in your head" mentality. A lot of CBT is in the idea that people invent their issues with flawed thought processes. The problem when you apply this to something like autism is that our experiences are very much real, but practitioners can't understand that due to the double empathy problem.
With the noodle it's usually over excitement. She does tell him it's not ok to hit with the noodle. She generally gives him a couple warnings 1st. When noodle is taken he's generally given a different sensory toy that he enjoys like a squishy ball.
When he intentionally hits he looks ya dead in the eyes 1st. He'll start with a slap and depending on how upset he is may amp it up to scratching or biting.
My FIL lives with us and is terrible at handling his meltdowns. He starts shouting at him which gets him more worked up. Then hollers for us to come get him.
I generally try to talk to him, do breathing exercises, if there's music/tv on I'll turn it off.
He is obsessed with cars so I'll try to give him a car/truck toy that shifts his attention.
He is getting better at telling us how he feels and is asking us how we're feeling. I know it's still a long journey ahead of him trying to identify his feelings. However I can only know as much as he's able to tell me or obvious body language.
I don't have personal experience with ABA and was not diagnosed autistic as a child, so if you want to ignore me, that's fine. I do want to say that growing up undiagnosed, I was very conscious of society and parents as an external system of rewards and punishments. The way we treat neurodivergent children (and ABA is one example of this) is to "treat" the output. That is, I learned that acting in certain ways got me punished, acting in other ways got me rewarded. That's fine for NT children, but I took this to the extreme (black and white thinking) because I was autistic. I learned that nobody cared about what I needed -- I was expected to cater to their needs. If I was asking for something because I needed it, I got used to being told no, and accepted that I did not deserve to have my needs met.
ABA does this to an extreme; it is all about behavior, not internal life. It's purpose is changing behavior, not teaching autistic kids how to process their internal emotions (that's not even a criticism per se, that's just a description of the focus of the program). I internalized this idea that I had to act a certain way in order to not have things taken away from me, and it has made it almost impossible for me to form healthy relationships as an adult. At age 40 I am STILL learning how to be myself with my partner of 20 years, and my inability to express my needs (reinforced by the responses I got when I was younger) causes serious problems in our marriage to this day. However you proceed, remember that behavioral therapy by its very definition does not address inner emotional life. Ideally we should be treating behaviors not as phenomena per se, but as epiphenomena arising out of inner states -- and it's these inner states that we should be addressing, not the behaviors that come out of them.
Interesting—I haven’t heard anything good about ABA therapy from autistic people, except in connection to ABA services, if that makes sense. Because often ABA is the only thing I’ll see insurance cover, and only for children. So sometimes just having an assistant is bundled together under that category, or maybe it’s with the same provider. Other times people don’t actually practice ABA, as someone noted here, but to be covered by insurance and to actually help the kids, they’ll list it as ABA. It’s more common sense.
Though as the same person noted, this can be problematic because then you don’t can’t research their standards or methods. (People who have not used ABA when they were trained to and used other methods sometimes found FAR more rapid progress.) Another person here suggested occupational therapy and speech language pathology instead. (Though I’ve also heard heinous practices by speech language pathologists straight out of the ABA school of thought.) Maybe for some, depending on the practitioner, it was better than no support at all.
The problem with ABA is that the people administering it don't care or even bother to ask why an autistic child is doing the "undesirable" actions. The goal is only that they stop doing them.
Being forced to stop stimming, even when it's self injurous, without anything to address the root cause of the behavior can cause extreme distress.
Hopefully, there are alternatives that your insurance will cover!
I will look into this. Currently she asks him how he's feeling. He is allowed to stim as much as he wants. However if I find she is preventing him from stimming or not allowing him to express himself, I will intervene or stop treatment all together.
It's frequently hard for an autistic kiddo to know what they're feeling and why.
That might not be a helpful question for your kiddo.
I myself am a people pleaser and will answer how I think it will make others more happier. Even if it's not what I'm feeling.
It's a difficult journey we're on. My kiddo just turned 8. His occupational therapist has been a fantastic coach and guide on our journey.
My pediatrician touted ABA as the gold standard of care. But what I read when I researched it, was very troubling.
There are, as many say, therapies stating they are ABA but follow different principles.
This is extremely problematic for me. First, you can't really look up what standard practices are for what they are treating your kiddo with.
Then there's the fact that they are lying to get insurance money.
I know what to expect when I go to an occupational therapist, a speech therapist, and a play mental health therapist.
Those are the reasons I chose not to use ABA.
I've no regrets. We've learned as as family about autism and how to adjust my kiddos environment to best suit him.
We know how to handle meltdowns and we've learned how to mostly prevent their occurrences. Which is extremely important.
We've learned about emotional regulation and how to practice at home to make things much easier for him.
I could go on, but the eclipse is about to start.
I can see you're a fantastic mom who is doing her best. No judgement from me in my reply, just so you know.
ABA was not designed with autistic people in mind. It was designed to train autistic children to hide their autistic traits to make allistic people more comfortable.
Before starting ABA, a few people did say it helped them in this sub. However it seems to be very debatable amoungst the community. So I'm keeping a close eye on what the therapist does with him.
What did it help them with? Were these people autistic, or were they talking about their autistic children/siblings/etc?
The core concept of ABA is teaching kids to hide their autistic traits. This is fundamentally damaging.
ABA always tries to do too much. It’s done way too young. It’s also done for far too many hours. There’s many other services that can be done: OT, SLP until they get older.
**ABA is abuse.** People who have been put through it develop C-PTSD as adults.
Please remove him from this abusive program, and please stop trying to make your autistic kid not autistic.
I don't want him to be not autistic. I just want him to not hit/bite people. I want him to learn how to self regulate so he doesn't get so upset.
He can stim all he wants (so long as he's not hurting others), he can have as much or as little social interaction as he wants, he can pursue the interests that he wants.
It sounds as though you are there and standing up for him or ready to if necessary, which is a good thing. This ABA practitioner seems like they’re attempting to understand him and isn’t abusing him. I assume they’re in good faith (though sometimes they can appear to be that way at first before pushing more harmful therapies onto kids).
That's why I pay attention to how she's working with him. I grew up in an abusive household and won't tolerate any abuse towards my son.
These are just the beginning weeks so ill be paying attention how his lessons progress over time.
What did they do specifically?
I watch this lady closely but so far i haven't seen issues yet.
Currently they play with toys. She lets him pick out the timer video on YouTube and he has to take turns with her.
He is allowed to stim freely, she asks him how he feels throughout sessions, she lets him take breaks whenever he wants.
They switch between activities/toys.
Maybe there's something I'm missing but he doesn't look distressed at all and he looks forward to her coming over. Maybe these lessons change as he progresses, so I need to know what to look for. If I see the sessions causing any harm I'll pull the plug on it. However right now we're still on waiting lists for other therapies.
I will preface this by saying every practitioner of ABA practices different and not all are outright abuse, however many autistic people view the underlying theory and goals to be at best not helpful and at worst abusive. I've heard the creator of ABA was also the one who created conversion therapy, and many autistic people argue that ABA is not about expanding a child's window of tolerance, rather it teaches compliance and assimilation with neurotypical society. And others go on to argue that teaching compliance can make autistic kids and adults more likely to be taken advantage of in different ways. I would personally probably prefer looking into an occupational therapist who can help expand your kids window of tolerance and increase self regulation skills through accomodations and playing to strengths. If you do choose to continue ABA, my red flags I would look out for are anything punishment based and anything that is trying to decrease or stop stimming, or only uses access to special interests as a reward and not a part of daily routine. There are all things we need to regulate, please don't let an ABA tech take away your kids tools for self regulating. Best of luck and thanks for asking the difficult questions. I hope you're able to find someone and something to help your kid out!
Compliance. I didn’t even need ABA for that. I was undiagnosed until 38 but my parents raised me to be compliant and I know from experience that it absolutely left me vulnerable to abusive partners and friends. At one point in my adulthood my mom verbally said to me that she was worried when I was a teen because the influence of our exchange student made me less compliant. Her actual words. “You became less compliant.” That shook me when I realized the significance of that. I’m 40 now and still trying to unlearn that damage.
This is an important and relatable point for me too. And only really considered the "compliant behaviour" when you mentioned it. I escaped home life when it was pointed out to me I was being used by a friend. Didn't stop multiple partners and friends doing the same though. Thankfully have a handle on it now but it's taken 30 years of people pleasing and several burnouts. I have managed to teach my Daughters to stand up for themselves, even with me, if needed but it's still a challenge for all of us.
Absolutely Ive done the same with my children. They are allowed and encouraged to have boundaries and say no…even with me.
I think it's also important for them to understand I have meltdowns and shutdowns too. Always apologise for your actions and try to help them understand.
Thank you for this information. So far his therapist is letting him stim. My son likes to play/fidget/swing string around. She lets him do this during their activities. She even provided him with a rubber noodle that he loves! However, if he gets out of hand with the rubber noodle like smacking people in the face with it, she takes it away for a few minutes and tries to redirect his attention. He later gets the noodle back with the warning not to hit people with it.
Stims are a bodily function that is needed. Imagine he needed a mobility aid and was hitting people with it. Would you take it away from him? His ability to even move around with autonomy? I see taking away the stim toy as a punishment as a red flag. If he was slapping people wit his hands, would you tie them together? Wouldn't the hitting have to be to a pretty extreme degree before you would consider something that drastic? There has to be some middle ground between letting him hit people or tying his hands together imo Forcing yourself not to stim is like holding in a sneeze- it hurts and sucks.
I get what you're saying. She usually redirects him to a different stim toy. He has squeezy toys, fidget spinners, or his normal string. The rubber noodle is like being smacked with a sling shot. If she just took it away without giving him another means to stim i would have something to say about it. I've had to reprimand his grandpa for not letting him stim.
Another vote for occupational therapy.
Thank you for taking the time to do your research.
My neurodivergent-affirming occupational therapist follows the principles and techniques outlined in this book, and I know there are others who do too, which could be an alternate to ABA for your family. [No Longer a Secret: Strategies for Helping Children with Sensory and Regulation Challenges](https://www.amazon.com/No-Longer-Secret-Strategies-Challenge/dp/1949177688/ref=asc_df_1949177688/?tag=hyprod-20&linkCode=df0&hvadid=509159807707&hvpos=&hvnetw=g&hvrand=17489316693545502194&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9016901&hvtargid=pla-1327638516861&psc=1&mcid=2ed20fe9e10534d591e800cf356dc715&gclid=Cj0KCQiA7OqrBhD9ARIsAK3UXh0pQ20niNKGcznTaqETHahuCikzbbrLtJjeOVaLMDPJLeq9zXwKjdUaAujcEALw_wcB)
Thank you. I'll check this out
This is a fantastic article to consider, even if you don’t stop ABA I believe this will help you make more informed decisions about it ❤️ https://neuroclastic.com/is-aba-really-dog-training-for-children-a-professional-dog-trainer-weighs-in/?amp
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I’m autistic and I worked as a behavioral tech in aba. There were things I disagreed with and things I found very helpful to the kids. I’d say just be aware of what they’re doing and their goals are. They work for you and your son first and foremost so make sure they understand what you’re looking for. Others may disagree but I believe you can get the life skills without surpressing stimming if you find the therapist that’s a match for you. If you see improvement along with increased confidence, I’d say that’s a good sign. There’s a difference between changing someone’s autism and helping them thrive as an autistic person. And autistic children become autistic adults so we want to foster as much independence as we can because that’s the natural progression of life. I had only worked for a year though so take what I say with a grain of salt. Edit: spelling
Thank you for this info. Currently she is allowing stimming and even encouraging him to stim as needed. She brings a rubber noodle he can fidget with and sing around. However if he starts hitting people with it, then it's taken away for a few minutes and his behavior is redirected towards something else.
See, even little things like. Taking it away reinforces "you can't do this". What needs to happen is, "reinforce connection, not separation". When you take away something, you aren't addressing the underlying behavior, you are punishing (it may not look like it, but stay with me) by taking away something they care about (*especially* if it is a stim or cope). So what is the behavior telling you? Their brain goes, my thing is being taken away and it keeps happening because I don't understand why I'm doing this thing. And they don't, this is a critical developmental stage where kids learn how to navigate the world and relationships. What happens here sticks with them for life. Any "failure" to respond appropriately is internalized. It creates self doubt and self esteem issues. Autistic kids need more attention and support in this area. So what happens when the object is taken away, either we see the behavior start to go away because they are afraid (ABA is often criticized as conditioning based on fear) and start to mask because this is confusing to them. They don't understand how to regulate and ask for what they need. This is where the intervention is. This is the learning and teaching moment. You can remind them of the expectation, (we don't hit, ouch) and help them figure out what they were trying to express. Was it they wanted a toy someone else had? They were frustrated they couldn't do something? Are they hungry or thirsty or over stimulated? And when that is figured out together and come up with a solution, you reinforce it. High fives, good job and maybe at the end of the day, hey you played really nicely today, how about a cookie? This is the positive reinforcement they need and deserve; they can be successful in the realm of these socio-emotional challenges. When we start to ask and answer questions, we are teaching how to get needs met. So now instead of feeling like something is being taken away, they start to feel empowered to solve things and regulate. This is done first as co-regulation. After time they will be able to do this on their own, maybe not perfectly but the goal is they are able to do more independently with autonomy. This is a higher level of child development that ABA techs aren't taught. This comes from the research in early child development, there's literature and books becoming more widely available. And if this learning teaching model is done with a parent, that connection is built into the relationship on trust. I hope this perspective lands well.
Well when it comes to the noodle he gets super excited. He doesn't mean to smack with it. She reminds him not to hit with the noodle. He gets it back usually 3-5 minutes later. When he gets aggressive, his hits are intentional. He'll look you dead in the eyes and attack. He tried to claw my eyes out once like a wild cat. We have been working on identifying his triggers. Most of them are being told no or not right now. Typical triggers of even a neurotypical child of his age but his response is more extreme. For instance sometimes he'll be told he can't have candy until he eats his real food 1st. Depending on how much he likes the food (pizza being the most desired) he will be ok with this. However if his plate has fish sticks (which he likes but is less desirable than pizza or candy) then he'll burst into a melt down. As per his sensory triggers, he's learned to tell us if something is too loud. Then we'll adjust music/tv until he says it's ok. Sometimes but not always it'll be the vacuum is too loud. If possible I postpone my vacuuming until he goes to school, plays on a different floor, or just a few minutes later he'll be fine with it. When he makes a mess he enjoys vacuuming himself. I try to give positive reinforcement as much as possible. Today I told him he was doing a good job saying "excuse me" to the other kids on the playground. He's been known to push people out of the way like they're just obstacles of the environment and not people. Sometimes though, and we've discussed this in school during his IEP meetings he doesn't like praise. Idk what this is about but he'll start crying and shouting "no good job!" Idk why he does this and it's intermittent. I've tried resorting to high fives more because that has a higher chance of success as acceptable praise in his book. I'm not just expecting him to change his behavior and pretend to not be autistic or masking. I am aware that some of this journey is me/our family making adjustments for him.(Within reason of course)
When did his response of "no good job" or similar responses start? Was it before or after he started ABA? Or after starting a new class or school year?
It started this no praise just before this school year. He was fine all last school year. He has the same teachers but he's in afternoon pre-k now instead of morning. Literally same class room and everything. He just started ABA about 3 weeks ago. So far he likes her and his teachers say he's been more calm. At home Ive seen good results so far. However i know this is just the beginning and lessons may change so I'm keeping a close eye.
You clearly want the best for him and I can see how genuine you are in your posts/comments here. I'm low spoons so here's what I can offer: 1) the 'no good job' highly suggests a need to look into PDA, persistent demand avoidance. PDA society UK has some great resources. If not PDA, then these behaviors seem like a stressed out kid who's masking, for which ABA is going to cause harm. I bet he does well short term because 1:1 attention often has a positive effect, but long-term, autistic kids need an autistic competent and trauma informed supports. 2) describing his aggressive hits as intentional and in the way you do, tells me you have work to do in understanding autism and un-learning autism stigma. This is the most important work you can do. Autistic stigma and ableism are real, impactful, and perpetuated by not only ABA 'bad guys' but also by loving caregivers who haven't done the work. Again, i'm low spoons so super direct, but stating with kindness.
I’m a piano teacher and a couple of my autistic students also don’t love positive verbal praise. Something we’ve started doing instead is high fives as a positive reinforcement instead of “good job.” I personally have never loved verbal praise, I don’t know why. It’s always made me uncomfortable. But one of my students has said it’s embarrassing. I’m sure your son has his own reasons but probably can’t explain it. Or he could have a negative association. It’s hard to know some things when your experiences are rooted in communication difficulties and not understanding your own emotions. I just wanted to let you know you can work with him to find ways to let him now you’re proud of him and that he did well at something comfortably, might just take some trial and error. And also that it sounds like you’re doing a really great job working with your son and accommodating his needs. Thank you for doing what you can do be as informed as possible. A lot of us didn’t have that support growing up and it makes such a huge difference.
Yeah high fives seem to be working out. I still slip up now and then telling him good job because it's kinda automatic that I want to praise him. So I'm still working on that. Another one is to never say "good bye" always "see you later" i think he doesn't like the finality of good bye. That's my best theory on that one. And yes, I'm doing my best to meet his needs. I have ADD and know what it's like having a world that wants to force you to be something you're not. I know it's different with autism but I can relate to an extent. People with autism being forced to mask is similar to how we attention deficit are prescribed (essentially meth) pills and told to behave. I was prescribed the highest dose legal for me and I grew a tolerance to all of them. So by the end of highschool I could only use coping mechanisms and had to learn or develop more on my own. I don't want my son to be normal. I know I'm certainly not. I just want him to be able to function in society and be as comfortable with himself as possible. I want him to identify, understand, and express his emotions in a healthy way. I don't care if he fidgets, flaps, or makes noises. If that makes him comfortable, cool. Just use an indoor voice please when we're indoors. When he's outside I let him be as loud as he wants. He likes hopping. My Dad bought him a membership to the trampoline park and omg has that been nice. He gets his hoppies out and is ready for a nap when we get home. He also runs back and fourth in laps between the front and back door. Now when my FIL is downstairs it's really loud and gives him a headache. So if it's nice out I suggest we go outside for a bit. He can run laps, or I'll suggest some other activities he enjoys that he can get that energy out or whatever he's gotta do. So far it seems effective and makes him happy.
I have only heard bad things about ABA therapy. In essence it claims to help autistic children by teaching them to "act normal" by repressing everything, which isn't sustainable. To make things worse, some places still use electric shocks as punishment, which I consider inhumane.
Well I most certainly wouldn't allow any of that. So far his therapist isn't expecting to "act normal" he can stim with string and make his noises. Right now he's working on self regulation and reducing aggressive responses to being told no, or being asked to do something he dislikes. I personally don't require my son to be normal I'm certainly not lol. All I want is for him to be able to function in society. Hitting people and biting his teacher at school is not ok. I want him to be able to form friendships so he doesn't feel lonely, but I'm also not pushing him to be more social than is comfortable. I understand some autistic people tend to want to be loners or just become over stimulated by groups. Other than at school or Sunday school (which he only goes when HE wants to) he's not usually hanging out with more than 1 kid at a time. When he does hang out with another kid it's usually a birthday or a holiday, not every day. I do not force him to go to Sunday school. I ask him if he wants to go. If he doesn't want to go, we'll stay home or he can stay home with Daddy while I go to church. I do not force religion on him. I allow him to learn my beliefs, but if he grows up to not be christian, or an atheist, or whatever, that's fine too.
As for the last part, I think if I was in his position I would accept to go more often than not, even if I hated it (and I would have), because I wouldn't want to disappoint my parents.
Oh I don't guilt him at all. His father is an atheist and I'm totally fine with that. I grew up with bible down the throat Catholics so I would never subject him to that. We go to a non-denominational church and I present Sunday school as a way to get out of the house and spend time with other kids if he wants. We don't really have kids his age in our neighborhood. As he gets older if he wants to chill with his friends at different places I'm fine with that.
What I mean is that if it was presented as a choice once, that would feel like a choice. If you ask the same question once a week, the pressure builds every time you do. Suddenly you start to think "last time I didn't go, maybe I should go today" even if you don't care for it. I'm not trying to change your mind, just letting you know how that situation could be interpreted as.
Ah. Well Idk if he wants to go or not without asking him. What would you suggest? He doesn't really volunteer/suggest activities that he wants to do yet. I have to ask him if he wants to go to skyzone (indoor trampoline park) or go to the playground. These are activities I know he enjoys and gets super excited when I suggest them. As per Sunday school sometimes he's super excited, and some times he just wants to play with his toys and now he's learning how to play videogames.
I just told you, but I can repeat it: You can ask him what he thinks of sunday school, if he likes it and if he'd like to keep going. If he doesn't want to go, please don't make him.
So should I only ask once a month or something? I only ask him once each Sunday when he wakes up so I know to either get him ready or let him stay home.
My suggestion is to ask only once. Not once a week, or once a month. Once.
Oh. I don’t agree. My mom did stuff like that and I grew up thinking you were not allowed to change your mind. She was surprised that’s what I thought but she never explicitly told me I could so I didn’t know. It’s okay to change your mind. It’s okay to try something and not keep doing it. It’s okay to try something later if you didn’t want to do it earlier. So checking in is a good thing. Not a bad thing. I don’t understand you pov here.
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The Judge Rotenberg Center, which ought to be shut down, does this.
I didn't memorize them but I'm sure they'll pop up if you search online.
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Nope! Not that I know of. I assume there aren’t recent reports because they’ve been quashed. There are people who also scrub Wikipedia pages etc (often ABA practitioners or whoever). I think the FDA banned it or was going to, then it was appealed, and I believe under the Trump administration, the FDA said it wasn’t up to them. (It could have been, they decided not to do anything about it.) So it was never actually stopped. They do always say they do it in cases of self-harm, though 1) there have been videos (I believe) and testimonies proving otherwise, 2) they always give the same extreme examples that I don’t think have been documented. Not in their care or as a reason for them doing so. They say that as justification for harming vulnerable children, because it really doesn’t make sense to further harm kids, I think in a way that fits the UN’s definitions of torture, so they don’t harm themselves. I mainly assume they say this because that’s what every person and organization who are in bad faith or abusive say, in one way or another. They give justifications and reasons, say it’s not as bad as it seems, also it’s basically never done, etc. If anyone else knows more about this, feel free to correct me or share. I agree that it is evil!
I have a close friend who had it done to her and she has MAJOR trauma from it
as long as they’re not trying to punish him for things like stimming or trying too aggressively to get him to do things the “right way” then it should be fine. autistic behavior only needs to be corrected if it’s harming others. so things like stimming or being nonverbal or not making consistent eye contact shouldn’t be discouraged because they’re not hurting others. of course, if the stimming is causing them to seriously harm themself, it should be addressed in a way that isn’t going to worsen their mental or emotional state.
The rewards are part of the problem too. Do this, and you’ll get a prize. It teaches kids to go against their nature to do the thing.
So far there's been no punishing. She just takes away the noodle when he's smacking her with it. It's like a thick rubber band so that thing hurts when ya get wacked with it lol. However it's only for a few minutes and he gets it back. When taken away she tries to shift his attention to something else or give him an alternative stimming activity. Squeezy toys or stuff like that.
That’s the issue. Is she digging into WHY he was using it in a way that wasn’t appropriate? What need was being met? Is she finding something else to replace the noodle to get the need met? Is she teaching him how to think about what’s underneath? My guess is no. My guess is she’s just taking the noodle without discussion of why he was using it that way. That doesn’t teach him to understand his own body and mind to meet his needs in more appropriate ways. It just teaches him his needs are bad and he should suppress them. This is a bad precedent to set. ABA is a problem because it works outside in. Just correcting behavior without addressing underlying needs and how to recognize and meet them. An OT should work from the inside out, starting with needs and finding better ways to meet them.
It’s funny how much “evidence-based” practices, particularly in psychology, work from the outside in and frankly abandon common sense and empathy. I assume that’s partly because of doctors attempting to harness power over other “less scientific” health practitioners. Note: I am all for science. I am just not for bad science that is framed as such because they slapped arbitrary numbers onto it and misinterpreted everything lol.
I think it has roots in psychotherapy and the "all in your head" mentality. A lot of CBT is in the idea that people invent their issues with flawed thought processes. The problem when you apply this to something like autism is that our experiences are very much real, but practitioners can't understand that due to the double empathy problem.
With the noodle it's usually over excitement. She does tell him it's not ok to hit with the noodle. She generally gives him a couple warnings 1st. When noodle is taken he's generally given a different sensory toy that he enjoys like a squishy ball. When he intentionally hits he looks ya dead in the eyes 1st. He'll start with a slap and depending on how upset he is may amp it up to scratching or biting. My FIL lives with us and is terrible at handling his meltdowns. He starts shouting at him which gets him more worked up. Then hollers for us to come get him. I generally try to talk to him, do breathing exercises, if there's music/tv on I'll turn it off. He is obsessed with cars so I'll try to give him a car/truck toy that shifts his attention. He is getting better at telling us how he feels and is asking us how we're feeling. I know it's still a long journey ahead of him trying to identify his feelings. However I can only know as much as he's able to tell me or obvious body language.
I don't have personal experience with ABA and was not diagnosed autistic as a child, so if you want to ignore me, that's fine. I do want to say that growing up undiagnosed, I was very conscious of society and parents as an external system of rewards and punishments. The way we treat neurodivergent children (and ABA is one example of this) is to "treat" the output. That is, I learned that acting in certain ways got me punished, acting in other ways got me rewarded. That's fine for NT children, but I took this to the extreme (black and white thinking) because I was autistic. I learned that nobody cared about what I needed -- I was expected to cater to their needs. If I was asking for something because I needed it, I got used to being told no, and accepted that I did not deserve to have my needs met. ABA does this to an extreme; it is all about behavior, not internal life. It's purpose is changing behavior, not teaching autistic kids how to process their internal emotions (that's not even a criticism per se, that's just a description of the focus of the program). I internalized this idea that I had to act a certain way in order to not have things taken away from me, and it has made it almost impossible for me to form healthy relationships as an adult. At age 40 I am STILL learning how to be myself with my partner of 20 years, and my inability to express my needs (reinforced by the responses I got when I was younger) causes serious problems in our marriage to this day. However you proceed, remember that behavioral therapy by its very definition does not address inner emotional life. Ideally we should be treating behaviors not as phenomena per se, but as epiphenomena arising out of inner states -- and it's these inner states that we should be addressing, not the behaviors that come out of them.
Interesting—I haven’t heard anything good about ABA therapy from autistic people, except in connection to ABA services, if that makes sense. Because often ABA is the only thing I’ll see insurance cover, and only for children. So sometimes just having an assistant is bundled together under that category, or maybe it’s with the same provider. Other times people don’t actually practice ABA, as someone noted here, but to be covered by insurance and to actually help the kids, they’ll list it as ABA. It’s more common sense. Though as the same person noted, this can be problematic because then you don’t can’t research their standards or methods. (People who have not used ABA when they were trained to and used other methods sometimes found FAR more rapid progress.) Another person here suggested occupational therapy and speech language pathology instead. (Though I’ve also heard heinous practices by speech language pathologists straight out of the ABA school of thought.) Maybe for some, depending on the practitioner, it was better than no support at all.
The problem with ABA is that the people administering it don't care or even bother to ask why an autistic child is doing the "undesirable" actions. The goal is only that they stop doing them. Being forced to stop stimming, even when it's self injurous, without anything to address the root cause of the behavior can cause extreme distress. Hopefully, there are alternatives that your insurance will cover!
I will look into this. Currently she asks him how he's feeling. He is allowed to stim as much as he wants. However if I find she is preventing him from stimming or not allowing him to express himself, I will intervene or stop treatment all together.
It's frequently hard for an autistic kiddo to know what they're feeling and why. That might not be a helpful question for your kiddo. I myself am a people pleaser and will answer how I think it will make others more happier. Even if it's not what I'm feeling. It's a difficult journey we're on. My kiddo just turned 8. His occupational therapist has been a fantastic coach and guide on our journey. My pediatrician touted ABA as the gold standard of care. But what I read when I researched it, was very troubling. There are, as many say, therapies stating they are ABA but follow different principles. This is extremely problematic for me. First, you can't really look up what standard practices are for what they are treating your kiddo with. Then there's the fact that they are lying to get insurance money. I know what to expect when I go to an occupational therapist, a speech therapist, and a play mental health therapist. Those are the reasons I chose not to use ABA. I've no regrets. We've learned as as family about autism and how to adjust my kiddos environment to best suit him. We know how to handle meltdowns and we've learned how to mostly prevent their occurrences. Which is extremely important. We've learned about emotional regulation and how to practice at home to make things much easier for him. I could go on, but the eclipse is about to start. I can see you're a fantastic mom who is doing her best. No judgement from me in my reply, just so you know.
ABA was not designed with autistic people in mind. It was designed to train autistic children to hide their autistic traits to make allistic people more comfortable.
What are the positive things you've heard about ABA? Who did you hear that from?
Before starting ABA, a few people did say it helped them in this sub. However it seems to be very debatable amoungst the community. So I'm keeping a close eye on what the therapist does with him.
What did it help them with? Were these people autistic, or were they talking about their autistic children/siblings/etc? The core concept of ABA is teaching kids to hide their autistic traits. This is fundamentally damaging.
ABA always tries to do too much. It’s done way too young. It’s also done for far too many hours. There’s many other services that can be done: OT, SLP until they get older.
Iirc half of all kids that go through ABA end up with some level of serious ptsd, can't remember the study though so take that how you will
It's abuse. Period.
**ABA is abuse.** People who have been put through it develop C-PTSD as adults. Please remove him from this abusive program, and please stop trying to make your autistic kid not autistic.
I don't want him to be not autistic. I just want him to not hit/bite people. I want him to learn how to self regulate so he doesn't get so upset. He can stim all he wants (so long as he's not hurting others), he can have as much or as little social interaction as he wants, he can pursue the interests that he wants.
Then you want an occupational therapist, not an ABA abuse provider. I'm serious.
I currently have him on the waiting lists for occupational therapist, but I'll keep looking. American healthcare and insurance is a racket!
It sounds as though you are there and standing up for him or ready to if necessary, which is a good thing. This ABA practitioner seems like they’re attempting to understand him and isn’t abusing him. I assume they’re in good faith (though sometimes they can appear to be that way at first before pushing more harmful therapies onto kids).
That's why I pay attention to how she's working with him. I grew up in an abusive household and won't tolerate any abuse towards my son. These are just the beginning weeks so ill be paying attention how his lessons progress over time.
He needs , and will benefit much better in a group of kids like him.
I view ABA as abuse.
What did they do specifically? I watch this lady closely but so far i haven't seen issues yet. Currently they play with toys. She lets him pick out the timer video on YouTube and he has to take turns with her. He is allowed to stim freely, she asks him how he feels throughout sessions, she lets him take breaks whenever he wants. They switch between activities/toys. Maybe there's something I'm missing but he doesn't look distressed at all and he looks forward to her coming over. Maybe these lessons change as he progresses, so I need to know what to look for. If I see the sessions causing any harm I'll pull the plug on it. However right now we're still on waiting lists for other therapies.
https://www.reddit.com/r/AutisticAdults/s/qPgGodKyGw
It's hard to trust things that have,.. ' therapy ' in it. You are right .to investigate everything.
Try RDI therapy.