ABA, alternatives, what to do

[LadyS]

Hi, I'm new here. Today my 3 year old was diagnosed to be on the spectrum, with mild to moderate symptoms. I was also recently diagnosed this past year as an adult with the same. With my son, he mainly has problems in these key areas: communication (still not talking clearly nor understanding when asked questions, etc), fine motor skills, and aggression. He has great eye contact, is very social with peers (although at times inappropriately) and good academically. He's also super hyperactive and has a hard time sitting still and falling asleep, and is unusually loud. He has started pre-school and is already fallen behind in some aspects and his teacher has mentioned some of the behaviors which were somewhat disruptive but that they were working on it. Now I'm trying to think of what to do next, including their recommendations of ABA therapy. As I am still a newbie to all this, I wanted to hear different opinions.

I've seen a lot of negative reactions and testimonials and read upon all the various reasons why ABA is not recommended especially within the ASD community and I can see the reasonings behind it. The associated PTSD is especially troubling. I was wondering if anyone had any positive experiences with it, especially as an adult who went through it and has their own child doing the therapy as I haven't seen many good reviews.

One of the reasons why I am considering at very least trying it out is that me and my brother (who also has ASD), were not diagnosed until late adulthood therefore didn't have any sort of therapy or any help. We both have suffered a lot and still continue to struggle with anxiety and depression due to people treating us like less-than-human. Now in some societies it's pretty easy to say well screw everyone else and ignore them, but in Asian communities and families where you're constantly in social contact whether you like it or not, with people who still hold stigmas about it, it is incredibly hard, especially when they're always constantly pointing out how 'different' we are. I'm already seeing them do similar, but to a lesser degree to my son and it's hurtful and he's also catching on when family members point out his 'faults'. We're also struggling a lot with his aggression and violent outbursts, especially right now as I'm about to have another baby in a couple months and have very little patience with my own ASD.

As of now I am planning to at least try (because I always believe in trying things instead of taking people's word) with ABA therapy and see how it goes while also looking out for the troubling signs. Especially with the speech delays because I feel like that's where a lot of aggression comes out with us not understanding his needs and feelings. But I was also wondering if there other alternatives that you've tried aside from ABA therapy and what they entail (home therapies, clinics, schools, etc?). Any thoughts or advice?

 

[Crossbreed]

(It wasn't clear from your first thread) are you in an Asian setting in Asia or in the US?

If the latter, see Autlanders, Thriving Outside of the Box: Finding Support Resources in the USA...

(There are still a lot of useful links, if you are outside of the USA.)

 

[Gracey]

Many toddlers the world over experience great frustration; leading to lashing out, due to limited vocabulary and expression at that stage.
Although common with, it certainly isn't exclusive to ASD.

Ask his teachers and classroom assistants what methods they use with him while he's in school.

If in UK, ask Health Visitor or social worker for advice.
It may be his "aggression" is the result of frustration.
He wants to interact but few are understanding him?

 

[LadyS]

I'm in the US if that helps. And communication problems are both at school and home. He doesn't understand or grasp what we are saying or asking him sometimes. He just repeats phrases over and over again or just repeats what the questions we ask.

 

[Aspychata]

He is repeating, yup. l homeschooled. l could grab her interest, cut down on stressors (school environments = sounds, kids, adults,rules, cafeteria). By high school, she was ready to handle the outside world on her terms. She applied for work on her own, sought counseling on her own. And now is in a uni. l believe l gave her a solid foundation of her believing in herself first. l also stepped back during teenage years and let her navigate her social interests without any social dictates.

 

[Au Naturel]

There are many different approaches to ABA. The one that looks best to me is PRT (Pivotal Response Training).

There are good ABA centers and good BCBA running them and some that are poor and borderline abusive. I would try to watch what they do and decide if that is something I'd want done to me. If you can't gather enough information to make that determination, maybe that's not such a good place. They should never be punishment oriented.

There is controversy about ABA but most of that is focused on how it used to be run. It has evolved since its inception. Whatever you choose to do, IMHO, your goal is to allow the kid to function in normal society without feeling like an alien. If there are eccentricities in his personality, you don't want to eliminate them, (Hint: You can't!) you want to find ways to channel them productively. Or at least give him a "sandbox" where they don't end up alienating the neurotypicals around him. If I'd had a sandbox for my quirks as a child, I would have grown up a much happier person.

 

[Tom]

A good teacher/behavior specialist/mental health worker will use all the tools at their disposal. There is no one method that works all the time with every kid. There are basic approachs but if they are not working, you need to try something else. I guess what I am saying is you need to find the right professionals that you can establish a good repoire with (and trust) and who include you and show you how to continue the therapy/training so you are both working together on the same page.

I am not familar with treatments for such a young kid however so not sure about specifics. Somewhat older there are options for the type of school or personnal aid the kid can get, the level and type of staff they need. And also options for in home services, an aide a few times a week or few hours a day to carry out the training methods determined by a specialist. Some depends on your health coverage and what they will cover and what is available in your area.

I should add your son's behaviors sound very common and typical of many kids on the spectrum. These are things they have seen before and often have success improving.

 

[Yeshuasdaughter]

HOMESCHOOL

And I'm not talking Covid-era Zoom chats. I'm talkin' pull your kids out of the school system and let them learn and grow holistically. Let them shine.

 

[Magna]

Maybe ABA has changed or maybe it's more beneficial in some places and not others. I don't know the answer to that. My niece went through many years of ABA. She's not yet a teenager so it's too soon to tell what latent effects there might be. I assume the underlying goal of ABA is to teach autistic children skills and behaviors that would help them in life. From what I could see it appeared to me that it was trying to model behavior to approximate that of neurotypical children. The problem I have with that is that being autistic isn't disliking your vegetables or having some sort of habit that can simply be permanently changed by behavior modification. That's why "autistic burnout" is a real and a prevalent thing.

 

[Yeshuasdaughter]

Maybe ABA has changed or maybe it's more beneficial in some places and not others. I don't know the answer to that. My niece went through many years of ABA. She's not yet a teenager so it's too soon to tell what latent effects there might be. I assume the underlying goal of ABA is to teach autistic children skills and behaviors that would help them in life. From what I could see it appeared to me that it was trying to model behavior to approximate that of neurotypical children. The problem I have with that is that being autistic isn't disliking your vegetables or having some sort of habit that can simply be permanently changed by behavior modification. That's why "autistic burnout" is a real and a prevalent thing.

ABA is not helpful deep inside the soul.

 

[Yeshuasdaughter]

I posted this elsewhere in a picture game, but I thought it was pertinent to this thread, in a serious way.

 

[Thinx]

All children have to learn some ways to fit in and cope with others, whether neurotypical or on the spectrum, but it really is important to keep in mind that the communication issues we have are due to brain differences, and that training children to alter their behaviours may also result in obscuring the origin or purpose of the behaviour.

Like you said, you pick up on what some of his behaviours are due to, they are signalling things like frustration or distress or confusion, at times. You do have a difficult balance to manage, from what you say, with your particular cultural norms added in to the mix.

Mostly when children are bright they will be able to cope, if treated with loving support, but also understanding some behaviours are not ok especially any that hurt or distress their peers. As he gets older he will benefit from your understanding and knowledge both of him as an individual and of how it is to have a different brain that processes the world a bit differently.

I have generally negative experience of ABA, but as has been said find out what is meant by it and decide for yourself if you think it's humane and appropriate for your child. Some people who are supposedly trained in ABA are not very sophisticated or experienced and as with any type of therapy, training or education, it's usefulness often depends on who is delivering it, their flexibility and ability to suit their approaches to unique individuals.

 

[LadyS]

He is repeating, yup. l homeschooled. l could grab her interest, cut down on stressors (school environments = sounds, kids, adults,rules, cafeteria). By high school, she was ready to handle the outside world on her terms. She applied for work on her own, sought counseling on her own. And now is in a uni. l believe l gave her a solid foundation of her believing in herself first. l also stepped back during teenage years and let her navigate her social interests without any social dictates.

I truly wish this was an option for me. Unfortunately with my own diagnosis, and having another baby coming soon as well as my son's potential ADHD, it wouldn't be the best option for me or him. But very glad it worked out for you both!

 

[LadyS]

There are many different approaches to ABA. The one that looks best to me is PRT (Pivotal Response Training).

There are good ABA centers and good BCBA running them and some that are poor and borderline abusive. I would try to watch what they do and decide if that is something I'd want done to me. If you can't gather enough information to make that determination, maybe that's not such a good place. They should never be punishment oriented.

There is controversy about ABA but most of that is focused on how it used to be run. It has evolved since its inception. Whatever you choose to do, IMHO, your goal is to allow the kid to function in normal society without feeling like an alien. If there are eccentricities in his personality, you don't want to eliminate them, (Hint: You can't!) you want to find ways to channel them productively. Or at least give him a "sandbox" where they don't end up alienating the neurotypicals around him. If I'd had a sandbox for my quirks as a child, I would have grown up a much happier person.

Thanks, that is useful advice. I do agree that there should be a somewhat balanced approach to teaching kids to function alongside neurotypical but not trying to completely eliminate what makes us unique. In my personal experience, I know some sort of therapy would have helped my brother and my family cope with his difficulties because he struggled with very minor things very late in life and the long term effects of that is very apparent even now.

 

[Aspychata]

I truly wish this was an option for me. Unfortunately with my own diagnosis, and having another baby coming soon as well as my son's potential ADHD, it wouldn't be the best option for me or him. But very glad it worked out for you both!

Your daughter needs you. Don't cop out on this. Give her knowledge, be there for her. Show her wisdom and kindness. l beg you. The stats for young females raped is staggering. There are groups who enslave young females. Never turn your back on her.

 

[Crossbreed]

We didn't home school because we didn't have the resources. My wife is (non-ASD) disabled and I had to keep looking for work until I finally got SSDI.

An autism-competent therapist (as I listed in my link, above) can help you to accommodate and advocate for your son, even if he must attend public school. That therapist can help you accommodate you son in cultural family settings, too.

 

[LadyS]

Your daughter needs you. Don't cop out on this. Give her knowledge, be there for her. Show her wisdom and kindness. l beg you. The stats for young females raped is staggering. There are groups who enslave young females. Never turn your back on her.

Not sure if you are on the correct thread? I don't have a daughter.

 

[Aspychata]

Sorry. l must have read something else. No worries!!

 

[Gift2humanity]

Not read whole thread, I watched an ABA video, I think a Scandinavian man 'invented' it.
To me, it seemed like he was trying to turn people on the spectrum into NT's and not embracing their neurodiversity.

 

[halfasped]

Hello dear mama of two, soon to be three.

I will try to condense 25 years of learning, in fewer than a hundred pages. Likely it will still be as long as a book.

A program called RDI was the only thing that truly worked. Stands for Relationship Development Intervention. A doctor and his wife, studied what happens with typical development. Then, found what similarities all people with autism have, and created a program to open a path of development to the person with autism/aspergers.

Do not study 'autism', study the development that happens without autism. Then you can see what autism ALWAYS ISN'T. Since autism is not always rocking, flapping, no eye contact, echolalia, verbal or nonverbal, blah blah blah. With RDI you learn to lead and guide your child in a way they can grasp. You finally feel you know what you are seeing...or more accurately what you are NOT seeing, so you know what to do a lot more often, feel competent, and so does your child. RDI, Dr. Gutstein. End goal, your child can use their own critical thinking, be just fine in the world someday.

'Normal' kids make discoveries by being diligent observers of people and building day by day gains from this continual observation...this you do NOT see with autism. A baby has eyes thirsty to see mom at birth, my son had no thirst like this. Faces, eyes, people, held zero interest. A baby cannot take it's eyes off the parent, siblings, etc... - it is natural and untaught. Right? This is referencing. This turns into imitation, aka borrowing another's perspective aka seeing the world through another's eyes/mind. Imagine all that is discovered and learned, when child can reference, that the most interesting thing in the room is mom, or dad, or siblings. Yes? Not the running water or dishwasher knob or everything that spins including the front load washer...done by default because there is no interest or enjoyment otherwise. This is not choice. RDI should provide choice.

So, with RDI, first step is to restore the natural parent/child roles by setting up situations for the child to naturally reference, like a baby or toddler or child without autism. Never will this happen by 'look at meeee' or 'pay attention', but yes you can force a child to memorize looking at faces and eyes which i am guessing happened with you and your brother. Never change the child, just give them choice kids with no autism have. Introduce the child to an ability most babies have from day one, that autistics never had at day one or lost.

In your life, you have had to try and memorize behavior, something was 'different' when you try and understand the social rules. Your parents, family, neighbors, other kids also had to do what you are told to but they had framework inside to support, while you are memorizing endlessly they are 'understanding'. They have framework to understand 'why' so have understanding behind behaviors that is invisible, RDI explains the invisible.

ABA is not about critical thinking. Sit still in desk can be done with ABA. Sit still in desk...unless you have an itch, unless there is something sharp on the seat...once i sat all day with a broken bleeding foot, did not know i was allowed to do otherwise. Never had special ed, aspergers literally not invented yet (lol?). ABA cannot teach variables, nothing can, there is always an unexpected variable. ABA is about behavior without framework, like walls with no wood studs behind them. So, ABA will give your kids walls. Nothing wrong with walls. But with framework, they can build their own walls just like those not on the spectrum...which is no guarantee of happiness, normal folks can be addicts, murderers, etc... so it's not walk in the park being normal either i would guess. Nor is it easy being able to behave without understanding, which, is me. You too likely. ABA will be as good or as bad as the person who is working with your child.

Humans are a spectrum, no two alike not even twins. Autism is not a spectrum in terms of what we all share in order to be autistic. People all have deficits, autistics always have the same deficits...referencing, reciprocity, intersubjectivity, ongoing appraisal (this is huge to quickly recover from the unexpected), episodic memory, there are a few more. As a mother, i tell you 'normal' moms with 'normal' kids share 'normal' neurology yet do not know how to reach their kids. Do not feel as if you are supposed to know more about your kids, because you have autism/aspergers too. Doesn't work like that. Does increase the odds you will understand them in the ways you both share. RDI, is about the ways you share.

I suppose the base for RDI, is something called Guided Participation. Not just from parents, but siblings, teachers, classmates. Been a long time, but i think that is a Vtgosky psychologist idea long ago, applied in a novel way with RDI. Allow a person with autism, to learn from guidance, not words not books not punishments not rules, but intrinsically and naturally...just like non autistic peers. RDI takes facts known for a long time, shuffles them in a way that benefits people with aspergers/autism. Every 'deficit' in RDI, will make you think gosh maybe i have autism too...because every 'deficit' is just a description of what everyone lacks to some degree. You will see people you know in many categories, does not mean they have autism. Autistics are people, not all people are autistic.....oranges are citrus fruit, not all citrus fruit are oranges. Some deficits in RDI make you a person, having all the deficits in RDI make you an autistic/aspie.

sorry this is so detailed, long, i am trying to circumvent natural questions that will occur, in hopes you will get a crash course to understand anything that will benefit you.

When a child is nervous to walk too far away from mama, who teaches the child that? No one, the child discovered that mama is safety, mama is their guide, their shortcut to knowing what to feel, what to do. They fall, mama gasps and looks afraid, they cry for sure because they are referencing mama (may cry even if mama smiles). But, after the fall, they RECOVER and are fine...with autism in many many situations the child cannot recover, cannot get over it, forever it is a bad memory, mama has to keep trying to support walls with no framework.

Repeatedly, you set the stage for your child to be successful in making discoveries, which, peers without autism were born with.

If I live to be 1,000 i might understand more. What little i know, this RDI was the only thing that made sense and worked. Cause i understood him. Such a relief to borrow my child's perspective - see the world through his eyes.

Where RDI is riddled with flaws...the parent has to understand it (referencing, ongoing appraisal, etc...) in the entire context of RDI. I got three staff from school to come to my first conference, i got it and they did not...likely because i have much less education so less to UNlearn than school. Oddly, people with autism/aspergers often grasp RDI better than people who do not have autism. I stumbled with so many new concepts i understood on paper but could not implement, had to hire an autism consultant who completed RDI training, back then I had a monthly membership to a site with other parents videos who also were learning rdi, had to buy a gadget to video, learn to upload...sounds easy now, not then. All new. Pre cell phone. Always $ was an issue, was an at home mom knowing no way could anyone deal with my son which was not his fault, but not the fault of who can't understand either. omg had to find work kids could come with too (like driving the 'little' bus). More than one kid here too, so. Eventually, i was inept, i cannot help him make gains i have not yet made with aspergers. It would be like a sore loser teaching a child how to be a good sport. See? However, he did make gains, undeniable, every gain became groundwork for gains he made independently and still retains. Sort of like riding a bike, once ya got it, ya got it.

ABA was much much more expensive. But ABA was paid for by our state. Because the government needs obedient citizens, not critical thinkers, I guess. Who knows. Someone's got to push the carts. I dunno. If my son enjoys pushing carts great, do it. Ultimately stopped ABA after a couple years, it made no sense. How can he be complaint, when he cannot understand this invisible hierarchy...of doing what you are told with no concept of why. You cannot be oppositional or defiant, if you have no concept of authority, or why to respect it, why.

School, school is all about a child being able to learn in the way a school teaches (much like you and your brother had to learn in the way your culture teaches...whether you could or not). Schools do not teach in ways each child is able to learn. Methods that work best for the majority are not even done...who learns BEST with a desk and book, whether asd or not. There are teachers that are God sent miracles, the school 'system' is a beast. I would have no idea, how to take the children with the least ability to tolerate noise and light and outbursts, shove them all in a room together, and teach them. Good teachers which includes home school moms who teach have my respect beyond what i can say...must end there. Did my best to share what i wish i knew day one.

My best thoughts and wishes to you dear mama. Answers you find for him heal you too.