Reversing autism/adhd diagnosis?

Log in / Sign Up

List of Forums + New Post Recipe Box Usergroups Following My Posts Bookmarks

Private Messages Advanced Search Rules New User Guide FAQ Advertise Contact Us

Forum -> Parenting our children -> School age children

Previous 1 2 3 4 Next

View latest: 24h 48h 72h

Chana Miriam S

Tue, May 04 2021, 8:01 am

FranticFrummie wrote:

OP, can I ask why you've been to 5 different doctors?

If you don't think your child should be diagnosed with anything, why all the extra visits? What are you looking for?

I wondered this also.

amother

Mint

Tue, May 04 2021, 8:02 am

amother [ Lime ] wrote:

Yes aba is puppy training. You do this you get a sticker or a light potch on the hand.
If your child really has autism it’s the right approach because that’s the way they need to be taught but unfortunately many kids don’t really have autism but other reasons they are acting out or exhibiting certain behaviors in class or home and when this method is used on them it can be detrimental down the road. Kids get very frustrated! There is no talk or explaining. Just action. Kids are treated like animals being trained for a circus performance. And their parents are taught to use the same training method at home! It’s crazy!!

No. Kids with autism shouldn't be abused either. I'm sorry.

nicole81

Tue, May 04 2021, 8:24 am

Again, what "record" are we talking about? This isn't a FERPA issue because it's not from an educational institution. It's HIPAA. And while once poster said other providers can see an autism dx on some record, possibly insurance, I know that no providers have ANY information about such a dx with my own child, and I've taken this child to many different providers over 10 years. The only information they have is what *I* give them, or if I allow release or transfer of medical records from another provider.

I'm going to reiterate what I said earlier, that there is no medical record beyond the doctor's personal records. If you signed permission to release, then it can end up elsewhere, but you would know about that. If you use the dx to get some sort of publicly funded benefits, then maybe it would show up in the city/state system.

But what the heck is this "record" we're going on about? One's comprehensive medical record is literally the compilation of all recordings from all doctors ever visited. There's no central database where all providers enter information.

Is there a doctor on here who can speak to this? I'm sorry, but this whole thread sounds insane to me. A quack doctor gives a diagnosis, you say thanks but no thanks, make sure to rip up any paperwork if signed, and skip happily into the sunset.

amother

Seashell

Tue, May 04 2021, 8:27 am

amother [ Mint ] wrote:

The base of ABA is combating behaviors not the reasons behind them. For example ignoring a child with ASD for rocking back and forth.

1. Child's rocking does not hurt anyone, there's no reason he should be taught this is a bad behaviour

2. This is how the child's brain processes information. Taking that away from them makes them suffer even more.

3. You are teaching the child there is something inherently wrong with him. That he was created wrong or bad.

These poor children suffer so so much. ABA can be done not abusively but that's the minority. I have a friend who was working in a huge place for ABA (She's has a masters in Phsycology) in Lakewood and she said she had to stop because she came home crying every day that they are literally making the kids the worse and hurting them.

Most of the parents and professionals in the special ed classrooms I’ve been in are very happy with the results of ABA.

amother

Amber

Tue, May 04 2021, 8:27 am

BTW my endocrinologist affiliated with a hospital can access every medicine that I fill at the pharmacy (not through doctors or pharmacists affiliated with this hospital).

nicole81

Tue, May 04 2021, 8:51 am

amother [ Amber ] wrote:

BTW my endocrinologist affiliated with a hospital can access every medicine that I fill at the pharmacy (not through doctors or pharmacists affiliated with this hospital).

Pharmaceuticals are different than individual doctor's medical records. There's much more oversight and regulation due to drug abuse and potential drug interactions so yes, pharmacists and doctors can look up your prescription history.

amother

Mint

Tue, May 04 2021, 10:15 am

amother [ Seashell ] wrote:

Most of the parents and professionals in the special ed classrooms I’ve been in are very happy with the results of ABA.

A - Actually
B - Brainwashing &
A - Abusive.

People don't realize how much their kids are hurting.

amother

Burlywood

Tue, May 04 2021, 10:30 am

Therapy is not one size fits all, and ASD is called a spectrum for a reason.

IMHO, ABA is only effective for very high functioning ASD people who can communicate and understand. If it helps to fine tune their ability to integrate into NT society, and the kids actually want this, then it's all good, assuming the therapists are patient and kind.

For lower functioning kids, I can see it doing more harm than good, and other modalities should be used that cater to their level of understanding.

amother

Mint

Tue, May 04 2021, 10:38 am

amother [ Burlywood ] wrote:

https://neuroclastic.com/2019/.....-see/

What does ABA do for high functioning kids that other therapies cannot? Is the goal to get along with NT society or to change yourself to make others lives easier and make you seem more "normal"?

notshanarishona

Tue, May 04 2021, 10:53 am

I wouldn’t be concerned unless it’s on his educational record. Ie you don’t want a diagnosis that’s not correct on his iep and that may cause schools to hesitate to take him.
No one is looking at his medical records except insurance unless there is reason to.
What are you so concerned about?

amother

Mint

Tue, May 04 2021, 11:06 am

Someone I know who has PTSD from ABA describes it like this:

They start by grooming the child. They give the child positive attention, toys, food, rewards, and get the child to love them. The first few weeks the child likes the therapy cuz the adults do everything they can to make the child love them.

Then they start to target specific behaviors, like eye contact (which can be painful for autistic ppl) or telling the child to sit still to pay attention (which is the opposite of how autistic children can pay attention).

Then comes the behavioral stuff. They start withholding the child's favorite toy unless the child does the behavior. The child then learns, the only way to get the toy is to do the thing that hurts. The child can never say no. They can never take breaks. If the child gets upset they get punished more until they comply.

When the child associates the toy with pain, and no longer wants it anymore, the "therapist" switches to necessities. The child is not allowed to eat unless they comply. They are not allowed to rest unless they comply. They have to comply for hours and hours every day. They recommend 40 hrs of ABA every week. 40 hours of being told to make eye contact, and sit still, and not stim, and not make weird noises, and to not be a child, basically.

This is how abusers groom small children into "voluntarily" engaging in s-xual act with adults, btw. And ABA therapy does set your child up to be s-xually abused.

We are taught our bodies are not our bodies, that adults get to tell us what to do, that when it hurts we must never show it hurts and must continue to appear normal and not upset.

Our behaviors that are upsetting to NT ppl get wiped out, and our very personhood is also wiped out.

Vacuum cleaners hurt me. The sound hurts and scrambles my brain. So they would randomly turn on a vacuum cleaner when I didn't realize it, and if I flinched, I was punished. If I cried I was punished. I had to practice reading and follow directions and point to the right color while a vacuum cleaner was left on behind me. It was excruciating. Needing to vacuum as an adult makes me nauseous now. I've been sick when one gets turned on without me being prepared beforehand. I have to wear earplugs. I have to leave the house sometimes.

They said I was cured of my phobia when I stopped flinching. I developed a dissociative disorder so I could "perform normality" to the standard they required so they would stop torturing me.

They said it didn't hurt me, it couldn't have hurt me, because it didn't hurt them. They refused to listen to me when I said it hurt. So I stopped telling ppl when it hurt. No matter what or why it hurt.

Autistic kids yell and stim and don't make eye contact for actual reasons. That's why we promote trying to figure out those reasons and giving accommodations instead. If they had given me earplugs as a child, and told me ahead of time they were going to vacuum, then I would have been okay. I wouldn't have needed to scream or cry or do the behaviors they felt were wrong. I wasn't trying to be bad. And neither is any kid. Children don't want to be bad. They want love and acceptance, and to be in charge of their own bodies.

amother

Forestgreen

Tue, May 04 2021, 11:36 am

amother [ Mint ] wrote:

Someone I know who has PTSD from ABA describes it like this:

Please thank your friend, from me, for allowing you to share this. It was graphic and informative and very very helpful.

miami85

Tue, May 04 2021, 11:40 am

cnc wrote:

I don’t see how autism testing can be done virtually. There are screening tools used to diagnose properly such as ADOS, Vineland etc

They developed a protocol for administering the ADOS- via telehealth as the main thing with the ADOS is creating social situations. I have my reservations but right now with pandemic protocols they are not recommending we score the ADOS if administered anyway so it's just as good.

The real issue is that I have not seen any good instruments for discerning Autism FROM ADHD as there is a lot of overlap as well as comorbidity.

amother

Mint

Tue, May 04 2021, 12:16 pm

amother [ Forestgreen ] wrote:

Please thank your friend, from me, for allowing you to share this. It was graphic and informative and very very helpful.

I will. It needs to be shared.

If you go to facebook groups for autistics many of them have in the rules you must post a trigger warning if you mention ABA.

Also see statistics for how much ABA causes PTSD:

Quote:

Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA

https://www.emerald.com/insigh.....0ABA.

miami85

Tue, May 04 2021, 3:00 pm

amother [ OP ] wrote:

Thank you! I didn't know that.

I am just skeptical over a diagnosis given after a virtual visit that other providers who evaluated the child in person disagree with

My child has Apraxia of speech, I got him diagnosed by a speech therapist. When I lived in NY I did preschool evaluations and I had plenty of kids who came in with "ASD" diagnoses from EI and quite often I was like "I dont' think it's ASD, I think it's Apraxia" but if the SLP won't diagnose it who will? So I took my child to a pediatric neurologist--wouldn't "diagnose" him, I took him to a Developmental Pediatrician, wouldn't "diagnose him with apraxia" but after a lengthy visit he also came away with an "autism diagnosis, if I wanted it"--and there was a smidgen part of me that wanted it for a certain behavior that I was having difficulty with, but the ASD didn't seem right and from my experience as a school psychologist and having done work with ABA, I felt that he missed the boat. I took him back for a follow-up to show him how much progress he'd made, that behavior of concern was now gone, and to re-discuss the diagnosis, but the Dr. never "re-assessed" and since he saw "ASD" in his notes, not once did he interact with my son to notice the progress. Meanwhile since he started speech therapy, he's had probably close to 10 different speech therapists and not a SINGLE ONE has thought autism, and when I had him re-evaluated this year for a learning disability, 2 different psychs also agreed with me that NOT Autism--he was diagnosed recently with ADHD.

So yes, now when I see ASD on developmental evaluations from "one session" I am always skeptical and want to make my own assessment. I had a conference just today where we determined that it was more likely his ADHD rather than Autism--though the outside evaluation said autism (also ADHD). We do not have good measurements that tease apart Autism and ADHD. My method in determining the difference has to do with quality of interaction, ability to think beyond the present, ability to share information with others and have joint attention. And ultimately, I think of the child. A child who has Autism will grow up and generally either not care that s/he has autism or it will be comforting to have that "identification" so others know how to interact with him/her, but a child with "ADHD" or otherwise neurotypical functioning will be confused and may be "insulted" if it's not the right diagnosis--because they are more socially inclined.

amother

Sienna

Tue, May 04 2021, 8:04 pm

These posts make me so sad, because there is such information out in the world about ABA, and it has such a bad name due to it being misused by many people. But that doesn't make ABA wrong, it makes the people who are using it inappropriately wrong. And if there's any child who could benefit from it and doesn't get it because of this thread we are doing a disservice.
Don't get me wrong, my initial introduction into the world of ABA over 25 years ago, also looked like puppy training, and I had the same negative reaction as many people here, to such an extreme, that I work in the field of education for students struggling behaviorally and I wouldn't hear the word ABA. It took many years, lots of research, and lots of weeding out the things that aren't done right until I came around.
I am now a BCBA, and there are so many amazing ideas that are foundations of ABA that are about changing behavior in positive ways. There are alot of ethical questions that need to be addressed such as one that was raised regarding an ASD person stimming, and the valid points that they need to do that, our goal should be to teach them how to find an appropriate, private place to do it when they are feeling that overwhelming need, our goal always needs to be to make the ASD person be able to function in the world, but does that mean they need to function the way a "typical" person functions? There has been so much change in that regard, and I wish people would know about the positive ways it can help their children.
I'm posting anonymously because I've been very vocal about this in real life.

amother

Mint

Wed, May 05 2021, 5:12 am

amother [ Sienna ] wrote:

The underlying goal of ABA is still to make the person as "normal" as possible. Even if there are a few people doing it properly, it's still the minority and it still has those underlying goals and ideas. The creator of ABA used to use electric shock therapy and said kids with Autism weren't people yet, they were blank slates you could now make into "people".

It's absolutely horrfying. Now that there's SO much more information about what autism is why wouldn't people just go with a different approach that's much safer and built on better goals.

Do you do any of the things listed in this article?

https://autisticmama.com/even-.....atic/

amother

Magenta

Wed, May 05 2021, 7:26 am

amother [ Mint ] wrote:

Yes that’s what I hate about aba. The foundation of it is wrong. Sure there are some good ideas and techniques buried within it. So take those and use them, but don’t use aba as a methodology. It’s awful.

amother

Tue, May 11 2021, 10:03 pm

allgood wrote:

The OP was asking about the diagnosis staying on her child's record. I'd love to argue with that ABA is a method that is effect and kind and considerate at the same time, but right now you have detailed the thread so please move to a different thread if you want to talk about that.

OP- I know this is easier said than done but I recommend stopping to worry about your child's record and instead prioritize his or her level of functioning. Someone with a diagnosis who is doing well isn't going to scare most people away (though most people anyhow wont have access to that diagnosis) but someone who is struggling and never got help will be just that...

Thank you!

amother

Tue, May 11 2021, 10:05 pm

amother [ Ruby ] wrote:

Opwdd will have a diagnosis record forever. Was this diagnosis shared with opwdd or its on Dr. Plonis notes?

I don’t think doc will if you have a further eval that nulls the previous. especially if you get it done by a good doc than the later diagnosis is what you should go by.

Also, my child transitioned from EI to cpse last summer and all evals were done virtually. The first thing the principal said when we went to look at a school was: I saw the evaluations were done virtually so I told mr. ___ (director) that we have no idea what this kid really is like. In other words, smart people will not look at a virtual assessment as the real deal.

Edited for hopefully more clarity...

Yes it is more clear now!
Thanks

Page 3 of 4

Previous 1 2 3 4 Next