The ABA monopoly in America leaves parents poor choices

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ASPartOfMe
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03 Sep 2019, 7:28 pm

Warning, this post is pretty depressing.

Autism programs in America commonly do speech and occupational therapies but generally center around ABA. It is rare for an autism program not to have ABA therapy.

When parents are looking to support their newly diagnosed autistic child ABA will be recommended by most of the experts, they often won't hear a conflicting opinion.

Let's say for whatever reason(not arguing the merits of ABA here, there are many threads for that) the parents decide they do not want ABA for their child. They will have to likely have to look elsewhere besides their school district and unlike with ABA they will likely have to pay out-of-pocket. They may have to move far away especially if they live in a rural area. Moving far away means the parents will have to quit their jobs and lose their local support network. Most importantly such a radical change might be a terrible setback for their change averse autistic child. And after finding a therapy they like there are pretty decent odds that person will be a quack, an outlier, with little or no peer reviewed studies to back up their claims.

Many families can not to afford to pay out-of-pocket never mind just picking up and leaving. What then? They can home school but most are not qualified to home school an autistic child.

The autism wars are usually defined as Autism parents vs self advocates. There are evil Autism Warrior parents out there for sure but most are trying to do the right thing.

Let's say you are an autism parent who are you going to listen to experts with hundreds of peer reviewed papers or a self advocate calling you a Nazi? Most parents will immediately tune out forever any outsider critiquing their parental choices. It does not matter how right or logical you are, you are fighting primal instinct and you are going to lose.

For us opponents of ABA it seems really simple, parents agreeing to ABA are agreeing to harm their child and are perpetuating the idea that our autistic behaviors make us broken. But sad to say because of the ABA monopoly in some situations ABA is the lesser evil.


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03 Sep 2019, 7:40 pm

This is certainly my experience IRL. The supports offered to children (and adults) with autism is basically just ABA and I have not heard a word against it except in this forum. Or medications.


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03 Sep 2019, 8:23 pm

I have an autistic niece. My sister chose ABA therapy for her (in addition to speech and occupational therapy). She was started on the therapies when she was preschool age if I recall correctly. She's had the ABA therapy for around six years now.

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.



ASPartOfMe
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04 Sep 2019, 3:36 am

Magna wrote:

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.

Besides the recommended 25 to 40 hours a week with ABA therapist, the therapy requires extensive reinforcement at home.


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04 Sep 2019, 3:39 am

ASPartOfMe wrote:
Let's say you are an autism parent who are you going to listen to experts with hundreds of peer reviewed papers or a self advocate calling you a Nazi? Most parents will immediately tune out forever any outsider critiquing their parental choices. It does not matter how right or logical you are, you are fighting primal instinct and you are going to lose.

For us opponents of ABA it seems really simple, parents agreeing to ABA are agreeing to harm their child and are perpetuating the idea that our autistic behaviors make us broken. But sad to say because of the ABA monopoly in some situations ABA is the lesser evil.

We should focus on the practices, not the people. Also, instead of "Nazi" (an over-used epithet), I think we should refer to ABA (or, at least, classical ABA with the aim of "indistinguishability from peers") as "Procrustean."


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04 Sep 2019, 4:33 am

There needs to be a therapy that is proven to help autistic children that is better than ABA, and it needs to be promoted heavily.


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04 Sep 2019, 5:51 am

Magna describes what I seen in households where ABA is practiced.

We have nothing else to offer them.


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Mona Pereth
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04 Sep 2019, 6:13 am

blazingstar wrote:
Magna describes what I seen in households where ABA is practiced.

We have nothing else to offer them.

Jason Lu (a.k.a. eikonabridge -- see his posts in the parents' forum and in the thread Response to some concerns about neurodiversity paradigm) does claim to have something to offer.

Also there are developmental therapies like D.I.R. FloorTime.

We need to demand that these non-Procrustean methods be studied more, so that insurance will be willing to pay for them.

Also, as I keep saying: There are lots of autistic people out there who were severely disabled as children but eventually became much "higher-functioning." We need open-minded researchers to interview as many such people as possible, and their parents, to determine what their parents did right.

(But first we need to organize our community so that our demands will be listened to, and so that there can be many more autistic-friendly workplaces, without the existence of which a non-Procrustean approach won't ever be even remotely considered by most people. See the separate thread Building the autistic community?, especially my posts on page 2 of that thread. See also the threads Autistic-friendly workplaces and Autistic-friendly social skills vs. blending in with NT's. See also the separate thread on The current state of the autistic rights movement.)


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04 Sep 2019, 8:05 am

According to this Psychology Today article:

Applied Behavior Analysis (ABA) is a type of therapy that focuses on improving specific behaviors, such as social skills, communication, reading, and academics as well as adaptive learning skills, such as fine motor dexterity, hygiene, grooming, domestic capabilities, punctuality, and job competence.  ABA is effective for children and adults with psychological disorders in a variety of settings, including schools, workplaces, homes, and clinics.  It has also been shown that consistent ABA can significantly improve behaviors and skills and decrease the need for special services.

There seems to be nothing wrong with the basic science or its implementation.

However, the fact that Autism Speaks supports ABA as the one best method for "normalizing" people with ASDs is something to be concerned about. While they're not at the level of shock-collars and hickory switches, I am concerned that this seems to be the only method being offered by treatment centers.


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Last edited by Fnord on 04 Sep 2019, 8:06 am, edited 1 time in total.

ASPartOfMe
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04 Sep 2019, 8:06 am

Mona Pereth wrote:
blazingstar wrote:
Magna describes what I seen in households where ABA is practiced.

We have nothing else to offer them.

Also, as I keep saying: There are lots of autistic people out there who were severely disabled as children but eventually became much "higher-functioning." We need open-minded researchers to interview as many such people as possible, and their parents, to determine what their parents did right.

There is such a person. Her name is Temple Grandin. She tours the country giving such advice. Yet she is widely viewed as an ableist who is promulgating a dated workaholic attitude by many in the Autistic community. Parents cheer and nod their heads and seemingly go home and continue their smothering ways.


Fnord Says:
Quote:
According to this Psychology Today article:

Applied Behavior Analysis (ABA) is a type of therapy that focuses on improving specific behaviors, such as social skills, communication, reading, and academics as well as adaptive learning skills, such as fine motor dexterity, hygiene, grooming, domestic capabilities, punctuality, and job competence. ABA is effective for children and adults with psychological disorders in a variety of settings, including schools, workplaces, homes, and clinics. It has also been shown that consistent ABA can significantly improve behaviors and skills and decrease the need for special services.

There seems to be nothing wrong with the basic science or its implementation.

However, the fact that Autism Speaks supports ABA as the one best method for "normalizing" people with ASDs is something to be concerned about. While they're not at the level of shock-collars and hickory switches, I am concerned that this seems to be the only method being offered by treatment centers.”


ABA was created to “normalize” autistic and homosexual behaviors. No matter how much positivity and politically correct language is used that goal is behind the “science” there no matter how much practitioners say otherwise. The KKK don’t lynch so much anymore, they say they are not anti black and are just for white pride these days. Not too many people believe them. Why should we be believe that ABA’ers are “fine people” who have disowned their roots?

The ABA monopoly is a cause of lack of research into alternative methods that require less time and money to implement and do not require continuous reinforcement at home to continue to “work”. Researchers need money and desire recognition. It is a lot harder to get those if you are an outlier.


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Last edited by ASPartOfMe on 04 Sep 2019, 8:38 am, edited 5 times in total.

Fnord
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04 Sep 2019, 8:11 am

People like Temple Grandin and Alex Plank seem to be statistical outliers on a bell-curve of functional people with autism.

A lot of us have also established ourselves in careers and family-oriented home lives.

But if you read the majority of posts and threads on this website, you might come away with the impression that we're all dysfunctional people who have no idea how to behave appropriately in social situations. Maybe for some of these people, ABA would be an effective method. For others, maybe not.


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04 Sep 2019, 8:44 am

From what I have heard ABA is harmfull in general to almost all people.I have never really heard of ABA success stories.

except for pro Dr. Lovaas propaganda


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04 Sep 2019, 8:49 am

vermontsavant wrote:
From what I have heard ABA is harmfull in general to almost all people.I have never really heard of ABA success stories. except for pro Dr. Lovaas propaganda
Are they propaganda because they're success stories?


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ASPartOfMe
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04 Sep 2019, 8:50 am

Fnord wrote:
People like Temple Grandin and Alex Plank seem to be statistical outliers on a bell-curve of functional people with autism.

A lot of us have also established ourselves in careers and family-oriented home lives.

But if you read the majority of posts and threads on this website, you might come away with the impression that we're all dysfunctional people who have no idea how to behave appropriately in social situations. Maybe for some of these people, ABA would be an effective method. For others, maybe not.

Temple Grandin has a mom who told the experts to f**k off. Alex seems to have not have grown up in a can’t do household. While as you have demonstrated it is possible to be successful after growing up in a toxic household it is less likely. You were neglected and abused. ABA is the opposite in some respects, it is constant smothering. Would you have overcome that? I doubt I would be sane or even alive if I grew up with today’s parenting, never mind ABA’d


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04 Sep 2019, 8:51 am

Fnord wrote:
vermontsavant wrote:
From what I have heard ABA is harmfull in general to almost all people.I have never really heard of ABA success stories. except for pro Dr. Lovaas propaganda
Are they propaganda because they're success stories?
only if the come from Dr. Lovaas and his follwers


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04 Sep 2019, 8:55 am

vermontsavant wrote:
Fnord wrote:
vermontsavant wrote:
From what I have heard ABA is harmfull in general to almost all people.I have never really heard of ABA success stories. except for pro Dr. Lovaas propaganda
Are they propaganda because they're success stories?
only if the come from Dr. Lovaas and his follwers
So other people's success stories are not propaganda, right?


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