The ABA monopoly in America leaves parents poor choices
_________________
Forever gone
Sorry I ever joined
Also, I never received any ABA treatment, and I seem to be doing okay (e.g., I'm neither homeless, nor imprisoned, nor institutionalized).
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Also, I never received any ABA treatment, and I seem to be doing okay (e.g., I'm neither homeless, nor imprisoned, nor institutionalized).
_________________
Forever gone
Sorry I ever joined
There was a "Lovaas kid" here on WP about 2014-2015. This person didn't seem like she was too happy.
The outcome might have been good for showing "non-autistic" behaviors----but maybe not so good as far as happy and successful lives are concerned.
The Lovaas method can be said to be "extreme ABA." He uses "Discrete Trial Training." Lovaas felt that 40 hours a week on ABA was optimal.
ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 66
Gender: Male
Posts: 34,462
Location: Long Island, New York
This was all before I received my own autism diagnosis January of this year, but being aware that I've had eye contact issues all of my life, I remember finding it very disturbing that from a very young age, my sister would interrupt my niece in mid-sentence and insist on "Eye contact! Remember, eye contact!". I told my sister that I didn't care a bit if my niece made eye contact with me. My sister said it was a very important thing for her daughter to work on and she continued to insist on it by interrupting my niece (who at that time was nearly unintelligible to anyone but her own family). I don't know how anyone could keep their train of thought by being interrupted mid-sentence. I know I can't.
These are my own personal opinions, but I feel like my sister considers herself to be an expert on all things autism and believes in ABA 100%. She makes a point to bring my niece and her siblings to extremely loud and chaotic public places because she says the desensitization is important; I've talked to my sister on the phone when she's been at such places and a few were so loud in the background that I refused to talk to my sister because it was actually disorienting to me.
My sister's view on autism and her perceived knowledge of it as that of an expert (again, my opinion) is the reason that I have not disclosed my diagnosis to her. I'm concerned that she will act as teacher toward me to 'school' me on what I should or should not be doing for myself.
She is such the autism expert yet she has apparently never suspected you are autistic.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
I've been in a position for many years to observe people with autism, the ABA providers and parents. The more I read here on WP, the more I see the tragedy in our treatment of people with autism. For the autists who are large and violent, I can't speak to that.
But for the relatively high functioning autists, the ABA does seem to be skewed towards making them appear more "normal." And I observe high levels of anxiety and even terror in the recipients of this treatment.
For example, several of the autists I have known come up to smell me. A person will walk up and start putting his or her nose close to my neck, my face, my hair. I let him/her do this for as long as they want. I may talk softly to him/her while this is going on. The parents, on the other hand, will try to stop the person from smelling me because it is not socially acceptable.
Others don't walk and may be lying on the floor. Parents gasp when I get on the floor and slowly roll or scoot to him/her, talking softly and then the individual gets a bit interested and may interact with me.
And then their are parents who won't let me do any of that, and tell me sternly that by letting the person smell me, for example, I am destroying all the work they have put into teaching this individual to not smell people.
I think that if an autist wants to smell me, s/he should smell me. No big deal.
_________________
The river is the melody
And sky is the refrain - Gordon Lightfoot
Didn’t they endorse that god-awful Rotenburg Center place, that literally uses shock collars?
More on topic, I was luckily not exposed to a huge amount of ABA growing up, and would probably have it much worse than I currently do had I been forced into 40 hours per week of that ish. It’s everywhere here in the States. And influencers like FatheringAutism who promote it on social media are only making it worse.
_________________
When anti-vaxxers get in my face, I say ... Have a Nice Day!
#palestinianlivesmatter
ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 66
Gender: Male
Posts: 34,462
Location: Long Island, New York
Didn’t they endorse that god-awful Rotenburg Center place, that literally uses shock collars?
More on topic, I was luckily not exposed to a huge amount of ABA growing up, and would probably have it much worse than I currently do had I been forced into 40 hours per week of that ish. It’s everywhere here in the States. And influencers like FatheringAutism who promote it on social media are only making it worse.
The Judge Rotenburg Center does still use electric shocks as an ABA aversive. The Judge Rotenburg Center is believed to be the only facility in America to still use ABA electric shock aversives. The guy who created ABA used electric shocks as well as corporal punishment.
Autism Speaks in the past has allowed the Judge Rotenburg Center to have a booth at their resource fair. The Association of Behavioral Analysts allowed the Judge Rotenburg Center to participate in THIS YEAR’S conference.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
This was all before I received my own autism diagnosis January of this year, but being aware that I've had eye contact issues all of my life, I remember finding it very disturbing that from a very young age, my sister would interrupt my niece in mid-sentence and insist on "Eye contact! Remember, eye contact!". I told my sister that I didn't care a bit if my niece made eye contact with me. My sister said it was a very important thing for her daughter to work on and she continued to insist on it by interrupting my niece (who at that time was nearly unintelligible to anyone but her own family). I don't know how anyone could keep their train of thought by being interrupted mid-sentence. I know I can't.
These are my own personal opinions, but I feel like my sister considers herself to be an expert on all things autism and believes in ABA 100%. She makes a point to bring my niece and her siblings to extremely loud and chaotic public places because she says the desensitization is important; I've talked to my sister on the phone when she's been at such places and a few were so loud in the background that I refused to talk to my sister because it was actually disorienting to me.
My sister's view on autism and her perceived knowledge of it as that of an expert (again, my opinion) is the reason that I have not disclosed my diagnosis to her. I'm concerned that she will act as teacher toward me to 'school' me on what I should or should not be doing for myself.
She is such the autism expert yet she has apparently never suspected you are autistic.
Maybe five years ago when I was initially researching things and came across information about Asperger's and mentioned to my sister that it sounded like I fit the diagnosis, she discounted my theory and said she thought I was just socially awkward.
When I joined WP last year and really started researching more intensely I brought it up to her again and told her that I was suspecting that I might be on the spectrum. This time she said she could see it as a possibility. What changed in her mind in that time I didn't think to ask.
The outcome might have been good for showing "non-autistic" behaviors----but maybe not so good as far as happy and successful lives are concerned.
The Lovaas method can be said to be "extreme ABA." He uses "Discrete Trial Training." Lovaas felt that 40 hours a week on ABA was optimal.
That's exactly the method used with my niece; the Lovass method. I'd forgotten the name of it.
I dont know the effectivness of ABA therapy. There does need to be more research in this field of techniques that work.
"Floor time" seems a good one.
Dont know too much about "sonrise" program effectivness
As far as "normalising" kids, its unfortunatly sad as it is we live in a disinterested, unsympathetic unforgiving human society where kids who are "different" get horribly bullied, some committ suicide.
Autistic adults often get wrongly accused because of unusual behaviours of being sexual preditors or peadophiles, get arrested, assulted or murdered, or driven out of town.
So trying to limit some autistic behaviours is sometimes in the best interest of the child from a safety point of view.
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
[...]
So trying to limit some autistic behaviours is sometimes in the best interest of the child from a safety point of view.
This would no longer be the case if we had a better-organized community big enough to induce more employers to create autistic-friendly workplaces.
This is the kind of thing that needs to be addressed by a civil rights movement. Again, to have an effective civil rights movement, we need a much bigger and better organized community.
_________________
- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.
- My Twitter / "X" (new as of 2021)
Posting here for anyone in the future looking for real life experience.
My 8 year old son has ADHD and tried ABA therapy this year. He was basically extremely stubborn, but also seemed to have a problem knowing how to go about basic movements. If you asked him to do something he would either say nah, or say he didn't know how to do it. If you tried to show him how to do whatever it was, he just never seemed to get it. For example, my son still doesn't "get" how to hang up a jacket on a coathanger. It confuses him what goes where, but he also doesn't care about it, so he puts in no effort.
ABA is a therapy which can be used on any person and most animals, and has been, successfully. It absolutely does work. But at what cost.
The purpose of ABA is to break a person's will. They do not tell you this. The modern language of ABA is that they are finding the reason for the "behavior" and finding a replacement behavior that is not harmful. What they don't tell you is that they are forcing the patient to do it, against their will, until they do it automatically.
The ABA people would not count an exercise as being completed until my son had performed it 100% correctly so many times on so many dates. My son would complain and be rude while he performed the action, or only do it correctly say, 4/5 times. He'd just sit there and glare at the worker and not do the last time. So they would count it as incorrect and start the counter over. This meant they were essentially doing a Groundhog Day of disliked tasks.
My son found it extremely traumatic. He went downhill pretty quickly. He started hitting himself in the head, he hit the worker, he started threatening self harm. He only did six months of it and when the extreme behavior started I ended the therapy. He is still performing the things the got through. Some of it he is doing too much of. He is washing his hands so much his hands bleed. We had to take away the handsoap in the bathroom, but he's still too hard on his hands with just water. He is so fastidious about cleaning up after himself after he eats that he can't do other things until he has performed the action exactly like he was trained. It disturbs me. It is like they trained him into OCD. These were not things that were even important to me. They were just like "Would you like him to pick up after himself?" And I was like, "sure" without really thinking about it.
I hope this helps someone. I did not find many real life ABA experiences before my son tried it. Just like, really think about it. Even if this is covered for you with your insurance and all, seriously think about it before you open this door.
ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 66
Gender: Male
Posts: 34,462
Location: Long Island, New York
My 8 year old son has ADHD and tried ABA therapy this year. He was basically extremely stubborn, but also seemed to have a problem knowing how to go about basic movements. If you asked him to do something he would either say nah, or say he didn't know how to do it. If you tried to show him how to do whatever it was, he just never seemed to get it. For example, my son still doesn't "get" how to hang up a jacket on a coathanger. It confuses him what goes where, but he also doesn't care about it, so he puts in no effort.
ABA is a therapy which can be used on any person and most animals, and has been, successfully. It absolutely does work. But at what cost.
The purpose of ABA is to break a person's will. They do not tell you this. The modern language of ABA is that they are finding the reason for the "behavior" and finding a replacement behavior that is not harmful. What they don't tell you is that they are forcing the patient to do it, against their will, until they do it automatically.
The ABA people would not count an exercise as being completed until my son had performed it 100% correctly so many times on so many dates. My son would complain and be rude while he performed the action, or only do it correctly say, 4/5 times. He'd just sit there and glare at the worker and not do the last time. So they would count it as incorrect and start the counter over. This meant they were essentially doing a Groundhog Day of disliked tasks.
My son found it extremely traumatic. He went downhill pretty quickly. He started hitting himself in the head, he hit the worker, he started threatening self harm. He only did six months of it and when the extreme behavior started I ended the therapy. He is still performing the things the got through. Some of it he is doing too much of. He is washing his hands so much his hands bleed. We had to take away the handsoap in the bathroom, but he's still too hard on his hands with just water. He is so fastidious about cleaning up after himself after he eats that he can't do other things until he has performed the action exactly like he was trained. It disturbs me. It is like they trained him into OCD. These were not things that were even important to me. They were just like "Would you like him to pick up after himself?" And I was like, "sure" without really thinking about it.
I hope this helps someone. I did not find many real life ABA experiences before my son tried it. Just like, really think about it. Even if this is covered for you with your insurance and all, seriously think about it before you open this door.
I feel sorry for your son and all the other victims of this “gold standard” treatment.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
ABA is just individual skill training nothing more.
Those with milder autisms are less likely to have been through ABA as their autism is likely invisible and they are diagnosed at an older age.
Many ND advocates hate ABA because they think it’s about converting autistic people to NT.
It isn’t and wouldn’t work like that anyway, ABA to tie shoelaces wont make someone less autistic but might make life a little easier for both person and carer.
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
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