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Reversing autism/adhd diagnosis?
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cnc




 
 
 
 

Post Mon, May 03 2021, 5:52 pm
imasinger wrote:
AIUI, HIPAA means that nothing is going to get shared unless you give permission. Full stop.

That means that if you decide to use the diagnosis in order to benefit from treatment, then, you and/or therapists decide he's done, nobody else will know about the diagnosis unless you choose to tell them.

And people do sometimes appear to outgrow ASD diagnosis. It's rare, and possibly stems from something else having been the issue, but if the treatments were helpful, who cares?


Just to clarify - a dx of ASD does go into a child’s universal medical (insurance?) record. I know children with ASD and every provider has access to that information .
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nicole81




 
 
 
 

Post Mon, May 03 2021, 6:14 pm
cnc wrote:
Just to clarify - a dx of ASD does go into a child’s universal medical (insurance?) record. I know children with ASD and every provider has access to that information .


And my child's providers have no clue unless I tell them What
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ra_mom




 
 
 
 

Post Mon, May 03 2021, 6:17 pm
amother [ OP ] wrote:
I don't know, I was told once something is on a child's record, it's on a child's record? Maybe that's misinformation.

I have been for multiple opinions (>5). All had the same opinion. (No diagnosis)
My concern is what happens if one dr gives a diagnosis after a virtual visit? (I.e. the dr is trigger happy with handing out diagnoses. Maybe to be able to prescribe meds, maybe to obtain services more easily, but the result is the same: a diagnosis that multiple diagnosticians (who HAVE seen the child in person AND evaluated the child extensively in person) disagree with.
What happens then?

Also, hi Nicole81! I've been thinking about you!!! You've helped me tremendously on other unrelated topics and I haven't seen you around!!! You've been missed.

Where did you send the diagnosis? If it was sent to a school/DOE, they do keep it on his school/college records.
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amother




OP
 

Post Mon, May 03 2021, 6:50 pm
cnc wrote:
Just to clarify - a dx of ASD does go into a child’s universal medical (insurance?) record. I know children with ASD and every provider has access to that information .


That's what I thought.
So - can a doctor diagnose a child with ASD after one virtual visit ?
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cnc




 
 
 
 

Post Mon, May 03 2021, 6:59 pm
amother [ OP ] wrote:
That's what I thought.
So - can a doctor diagnose a child with ASD after one virtual visit ?


no-not legitimately.
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amother




OP
 

Post Mon, May 03 2021, 7:06 pm
cnc wrote:
no-not legitimately.


So what steps can one take if that happens?
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LovesHashem




 
 
 
 

Post Mon, May 03 2021, 7:08 pm
Why did this doctor think it was ASD when others did not?
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amother




Lime
 

Post Mon, May 03 2021, 7:24 pm
In New York (and New Jersey?) schools are recommending parents get their kids evaluated and diagnosed so they can qualify for aba therapy. There are thousands of kids getting aba and they all need to have an asd diagnosis. For $450 there are many therapist that will do this for you. Most of the times it’s legit but many times it’s not! That diagnosis stays on your medical record and Medicaid record. You can later say he outgrew it but it’s there!
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amother




Ruby
 

Post Mon, May 03 2021, 11:11 pm
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...
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amother




OP
 

Post Mon, May 03 2021, 11:15 pm
amother [ Ruby ] wrote:
Opwdd has it on your record forever afaik, don’t think doc will if you have a further eval- especially by a good doc than that dx is what you should go by. That’s A.
B, my child transitioned from EI to cpse last summer and all Evans 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 (director) that we have no idea what this kid really is like.


Can you write your post more clearly?
You seem to have good information that would he helpful, I'm just have trouble understanding what your wrote.

Thanks!
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amother




Seashell
 

Post Mon, May 03 2021, 11:17 pm
amother [ OP ] wrote:
I don't know, I was told once something is on a child's record, it's on a child's record? Maybe that's misinformation.

I have been for multiple opinions (>5). All had the same opinion. (No diagnosis)
My concern is what happens if one dr gives a diagnosis after a virtual visit? (I.e. the dr is trigger happy with handing out diagnoses. Maybe to be able to prescribe meds, maybe to obtain services more easily, but the result is the same: a diagnosis that multiple diagnosticians (who HAVE seen the child in person AND evaluated the child extensively in person) disagree with.
What happens then?

Also, hi Nicole81! I've been thinking about you!!! You've helped me tremendously on other unrelated topics and I haven't seen you around!!! You've been missed.


What prompted you to go for a fifth opinion? Even if you disagree with the diagnosis you must be still thinking something is wrong.
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amother




Ruby
 

Post Mon, May 03 2021, 11:18 pm
amother [ OP ] wrote:
Can you write your post more clearly?
You seem to have good information that would he helpful, I'm just have trouble understanding what your wrote.

Thanks!

Basically what I’m trying to say is that a virtual diagnosis is a big nothing. Is this a doc you still see or was it a one time assessment?
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amother




Ruby
 

Post Mon, May 03 2021, 11:23 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...

Op I got very few hours of sleep so I hope I’m more coherent now 🔼...
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amother




Mint
 

Post Tue, May 04 2021, 4:46 am
This makes me so sad. ABA is so abusive.
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amother




Olive
 

Post Tue, May 04 2021, 5:31 am
amother [ Mint ] wrote:
This makes me so sad. ABA is so abusive.


This, I have encountered with many people who had been through ABA and it never helped them. It's puppy training, gay conversion therapy for someone self and it promises parents that they have then finally a normal child. Sorry, the people who had been through ABA got PTSD, depressions, eating disorders, because their emotional needs weren't met during these ABA therapies.
It's better to look behind the behaviour and what someone needs, to the person and not simply try to ''converse'' someone so he/she appear ''normal''.
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imasinger




 
 
 
 

Post Tue, May 04 2021, 6:03 am
I'm really sad to see the misinformation on this thread.

About the record -- under FERPA, any public school diagnostic information on record is under parental decision about whether to release.

https://www.carautismroadmap.o.....ords/

About ABA -- the reason it's so commonly suggested is that there are far, far more positive stories than negative ones. Parents are an essential part of the team, and they help set therapy goals and procedures. If they would see something is making their kid unhappy, they would be taken seriously. And as soon as the clients themselves are able to communicate, their perspectives, interests, feelings, and needs are included in the treatment. While there are bad practitioners of any modality, it's blindness to assume that's all there is. My suggestion is that any parent check out local resources for themselves. Again, they have ultimate control as to what happens and whether to continue.

Finally, regardless of ultimate diagnosis, a child who is struggling and successfully gets help is going to be far better off by young adulthood than the child who isn't given help. Worrying more about stigma than about the child's struggles is a very sad thing.

I hope that, whatever the situation for your child, OP, they will get appropriate help from competent, caring practitioners, sooner rather than later.
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amother




Mint
 

Post Tue, May 04 2021, 6:35 am
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.
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imasinger




 
 
 
 

Post Tue, May 04 2021, 7:17 am
I'm really surprised to read your friend's story. I know a lot of BCBA's in Lakewood, and I don't know a single one that would focus on rocking or other stimming behavior just stam, and certainly not in the "puppy training" way you describe.

I have heard of (and seen, because when I come to Lakewood to visit, I volunteer to teach music in classes at a special school which does a lot of ABA) kids who were aggressive and/or lonely, who learned to calm ragged nerves, look for social cues, understand what morahs and peers were communicating, and develop happy, productive, mainstreamed lives. I have taught in classes where a child might be rocking, and seen nothing but attention paid to the underlying concern -- were they feeling overstimulated, or a little excited? Happy, or unhappy? -- and treated appropriately for their emotional state.

I have, as a parent with 3 kids on the spectrum, who were diagnosed at 3 different ages (one at 2, one at 11, one at 25), seen the damage that could be prevented by earlier intervention, and the incredible work that could be done at any age.

I have seen so many parents who will testify to miracles beyond what they ever expected, and kids who are, at whatever level they function, truly, deeply happy, self confident people.

I have seen some of the same "experts" that blast ABA use its very techniques in their own methodology.

I have also seen things I didn't like -- therapists, mostly from public school/board of ed places, who tried to train eye contact by dumb methods, therapists who wasted time on bad goals (teach a young child how to converse by talking about favorite coors, which most young kids don't talk about with each other). Parents have to speak up when something is wrong.

I stand by what I said before. It's vital to check your local resources for yourself. And if one place doesn't look good to you, investigate others.
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amother




Lime
 

Post Tue, May 04 2021, 7:38 am
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!!
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allgood




 
 
 
 

Post Tue, May 04 2021, 7:55 am
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...
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