If your child receives an incorrect diagnosis, does it really matter?

[razorbackmama]

My ds was recently diagnosed with PDD-NOS. I do not believe he actually has this. He does have Mixed Receptive-Expressive Language Disorder, and I think that totally skewed things, along with the way they gathered their information. I'm irritated that we spent hundreds of dollars on this evaluation (and our insurance paid more). Despite the fact that WITH a PDD-NOS diagnosis, our insurance will pay for the speech therapy he needs, I am frustrated about the whole thing.

 

I would LIKE to DO something in response to the erroneous report they sent me. However, I wonder what it even matters. So the developmental clinic at this hospital diagnosed him with this...will that affect him in the long-run, especially if I don't tell anyone else about it in the future? For example, my 2nd son was diagnosed with PDD-NOS when he was younger, but we've moved a lot since then. Whenever we've gone to new doctors, the only way they've known is if I actually TELL them. He's perfectly normal now.

 

So will this incorrect diagnosis "haunt" him if I don't do anything about it? Or should I do something about it?

 

Probably the only thing correct about the report is their physical description of him.:001_huh::001_huh::001_huh:

[HeidiD]

So will this incorrect diagnosis "haunt" him if I don't do anything about it? Or should I do something about it?

 

Probably the only thing correct about the report is their physical description of him.:001_huh::001_huh::001_huh:

 

What can you do about it, except wait a while and get another opinion when he's had more time to develop?

 

Diagnoses are confidential. I don't see how it would haunt him - just don't mention it to anyone you don't want to know about it. :D

[EKS]

You have to be careful about autism diagnoses because insurance companies use them as an excuse not to cover things. They even use them as an excuse not to cover people. I think that professionals who hand out autism diagnoses should be required to *ask* parents if they want them and explain the pros and cons before giving them out.

 

Also, from what I understand, some diagnoses with prevent kids from entering the military.

[razorbackmama]

Here in CO, insurance companies are required by law to cover autism-related treatments. One thing I'm not sure about (since ours currently DOES) is whether the insurance has to be CO-based.

 

What can I do? I could get a 2nd opinion. I'm not concerned about just everyone knowing about his diagnosis. I'm concerned about anyone who is allowed access to his medical records.

 

Interesting about the military...ds has tossed that idea around from time to time. If I don't do anything NOW, I do plan to take him back in a year (which is what they want), once he's done language therapy for a year and V/V for a long time. Also, I will know how they operate, and I'll know how to fill out the forms. I'll know that they will be looking for every. little. thing (even if it's a normal behavior) to give him a label.:glare:

[HeidiD]

I think that professionals who hand out autism diagnoses should be required to *ask* parents if they want them and explain the pros and cons before giving them out.

 

That would be nice, particularly if there is disagreement. Most therapies can be accessed under other labels, anyway. We're going through the same thing and the doctor actually said to me that even though my son doesn't meet the developmental criteria and the degree of supposed autism is subtle (so subtle, so high functioning that it never occurred to anyone else before this that he had this particular disorder) not sticking him with the label would present an ethical dilemma because the #1 priority is that he be eligible for services! :mad:

 

Because the developmental profile doesn't fit, the behavior doesn't fit and we think their subjective observations are WAY OFF (along with everyone else we've asked to help with the evaluation) we would rather err on the side of caution and avoid an innaccurate label. I doubt we'll be so lucky. :tongue_smilie:

 

Also, from what I understand, some diagnoses with prevent kids from entering the military.

 

I think ADD is included on that list.

[razorbackmama]

the #1 priority is that he be eligible for services! :mad:

That's what I was told as well. The main reason they are giving him this diagnosis is because they feel he could benefit from some services.

[Terabith]

How far do the medical records travel? I mean, if my daughter is dx with Aspergers now, will that be something that stays with her for the rest of her life? Would the military really look at her records from when she was five? What are the repercussions?

 

I have to say, I'm getting a little scared, as it is looking more and more likely to get that dx....

[Guest]

How far do the medical records travel? I mean, if my daughter is dx with Aspergers now, will that be something that stays with her for the rest of her life? Would the military really look at her records from when she was five? What are the repercussions?

 

I have to say, I'm getting a little scared, as it is looking more and more likely to get that dx....

 

Dd has an official diagnosis. Although we obtained it privately, I gave a copy of the records to her regular pediatrician and now I'm wondering about WAY down the line... I heard recently a story in which a nineteen-year-old Aspie was denied health insurance as an adult, because of his diagnosis and because he had at one point been on medication for ADD and anxiety: this made him a "risk." Now I'm frantic with worry about my dd's status as an adult, and about all the kids on this board. How is it possible that we may have to choose between getting our children the help they need, now, and the help they will need during their entire adult lives?

[Renee in NC]

I think ADD is included on that list.

 

No, but taking ADD meds after the age of 12 will (if that makes any sense) unless a waiver is granted. Right now the standard is success in school/work for 12 months without meds and you can get a waiver.

 

As for erroneous dx, I don't know. My 9yo is diagnosed mildly MR (which he isn't) along with a whole bunch of other things. At this point I don't care, but as he progresses in age, I will. I want him to be able to get a regular diploma, if possible, even if it requires accomodations for his language processing issues.

[VinNY]

Well I was advised to get a diagnosis and testing, the earlier the better. The reason was that if my dtr ever needed services as an adult due to cognitive or behavioral issues, it wouldn't be assumed that it was due to drug or alcohol use as a teenager or young adult:confused: I also wanted her to be able to have accomodations for testing and college classes.

 

It seems like a crazy game, but sometimes you have to play the cards and hope they work in your favor. I am glad I was able to get services started even if the original dx was PDD-NOS, ADD. Once she started getting some sensory and vestibular issues cleared up it was obvious to the SLP's working with her that she wasn't on the autistic spectrum but that APD, Apraxia and motor planning were causing language and planning issues for her.

[elise1mds]

I worry about all this, too, especially with DD exhibiting bipolar symptoms. Genetically speaking, she's out of luck (or, if you go with last night's Big Bang Theory definition of things, she's "attached to another object by an inclined plane wrapped helically around an axis," but never mind), and I worry about all the possibilities and repercussions of a diagnosis. On the one hand, if you don't get the right diagnosis or the right treatment, the child can wind up resenting you later. On the other hand, if they're denied insurance or a job later because of the diagnosis and/or treatment, the child can wind up resenting you later.

 

Hello, tightrope, I'm going to walk you now.

 

Yeesh.

[razorbackmama]

Well CURRENTLY insurance can't deny you based on a pre-existing condition. But we all know how quickly things like that change.:glare:

[Renee in NC]

Well I was advised to get a diagnosis and testing, the earlier the better. The reason was that if my dtr ever needed services as an adult due to cognitive or behavioral issues, it wouldn't be assumed that it was due to drug or alcohol use as a teenager or young adult:confused: I also wanted her to be able to have accomodations for testing and college classes.

 

It seems like a crazy game, but sometimes you have to play the cards and hope they work in your favor. I am glad I was able to get services started even if the original dx was PDD-NOS, ADD. Once she started getting some sensory and vestibular issues cleared up it was obvious to the SLP's working with her that she wasn't on the autistic spectrum but that APD, Apraxia and motor planning were causing language and planning issues for her.

 

:iagree:

 

Ds has this paper trail now and I will "hold" his dx in reserve for just that reason.

[razorbackmama]

I'm resurrecting a super old thread...sorry!

 

I'm still wondering about this. DS has now had his "PDD-NOS diagnosis" for about 18 months. In the mean time he had about 12 weeks of speech therapy, and that has been it. The therapy did absolutely nothing. On paper he progressed to where he was able to do what they wanted him to do, but the therapist flat out told me that she simply didn't know what to do with him anymore. He was not super severe to begin with - just barely qualified for therapy (that we paid for, so it's not like he was receiving free services or anything) because he has poor vocabulary and struggles with figures of speech.

 

The developmental clinic people recommended social skills groups (I think that is what they are called). I flat out told them when they called with a slot that I would pass since he was misdiagnosed.

 

He HAS been diagnosed in the meantime with CAPD. THAT is an accurate diagnosis. He also has some sort of logic something going on, but I don't know what it would be called, so I can't look it up, which means I can't get help for him. (What a crock - that I have to suspect what he has before I can get help for him....)

 

ANYWAY. The report from when he was 13 is wrong, plain and simple. If it were right, I would not be asking about this at all. But since it is wrong, I do not want it to cause problems for him later on.

 

Now that things are computerized, will this faulty report follow him? Do I need to make another appointment to get this diagnosis officially reversed, even though it makes me sick to spend the money to do so since they are the ones who got it wrong in the first place?

 

Or is he OK if we just ignore it all "officially" and I continue to work with him on things (since he does still struggle)?

 

I just don't want not getting his records fixed to come back and bite us in a few years.

 

He also wants to be a Marine, so that is a very real concern.

[Lecka]

My husband was a drill sergeant in the Army a couple of years ago, and they were waivering everything for enlistment. They were waivering felonies (certain felonies). They were definitely giving waivers for ADD and previously using Ritalin.

 

Now -- they are not letting everyone in his field re-enlist who wants to re-enlist.

 

They are cutting numbers now, where before they were increasing numbers.

 

So -- I don't know specifically what the rules are. A good way to find out might be to just call the recruiting station. Also -- for waivers, if your son is a really strong candidate, they are much more likely to work with him on getting a waiver. For the Army -- this means being in good shape and getting a good score on the ASVAB and things like that. If they have DEP things and he goes to them and comes across well, that is going to help him get a waiver.

 

That is just in general. I am not sure at what age he could start going to DEP activities but that is how he can make himself known to the recruiters and they are the ones who put him in for a waiver and write the paperwork for it. Then someone else has to approve the waiver, but if they like him and think he is qualified, that will help.

[razorbackmama]

He actually isn't a very strong candidate:tongue_smilie: - I don't expect his ASVAB scores to be very good due to his language processing issues.

 

But military or not, I'm just concerned that ignoring this diagnosis because it's incorrect will end up hurting him. Yet I'm not crazy about the idea of having him be evaluated by these people again.:glare:

[Lecka]

If he is in good shape that counts for a huge amount, also. Or, if he just works hard and follows through. Or, if he just doesn't get in trouble.

 

Sometimes they have classes to help people pass the ASVAB. A lot of people do have to study for it to pass it.

 

If he is 15 or 16 there might be things he can go to at the recruiting station for people who are interested in joining the Marines.

 

I hope it will work out whether he ends up wanting to do it or not.... sorry I don't actually know about how the medical records and diagnoses work.

[Irishmommy]

What about something like this for your son http://www.seacadets.org/public/. My brother went to a summer camp like this one summer. I think it can give you a good idea what a military career would look like (if you were to inlist).

[razorbackmama]

What about something like this for your son http://www.seacadets.org/public/. My brother went to a summer camp like this one summer. I think it can give you a good idea what a military career would look like (if you were to inlist).

He's actually in the Young Marines right now and loves it. He thinks the Marines is just an older version of the YM, and it's not really, since the Marines break you down and then build you back up.;)

 

BUT even if he doesn't enlist (academically it will be very iffy), I'm concerned about future jobs, insurance, etc., with this PDD-NOS diagnosis.

[Crimson Wife]

If you do have him re-evaluated, I would wait until the new DSM is published. PDD-NOS is being eliminated as a diagnostic category, and something like 85% of those with a current diagnosis are expected to NOT qualify for the revised criteria for autism. It's a HUGE concern among parents with kids who are higher-functioning but still "on the spectrum". But in your case since you actually want to get rid of the diagnosis, the changes will play in your favor.

[razorbackmama]

Yes it will. I know for a fact that both my kids would not have received their incorrect diagnoses had it not been for the too-broad DSM criteria. Do you happen to know when it will come out? I haven't heard.

[Crimson Wife]

Next May is the anticipated publication date of the DSM V.

[razorbackmama]

Next May is the anticipated publication date of the DSM V.

Thanks!:)

[Guest]

Yikes, just when I decide to push for evaluations, I stumble across threads like this, and then I start to worry about my boys' future and how a diagnosis will affect them :(.

 

I have been reading "Children With Autism, Stories of Triumph and Hope", and in the first case, even though they were able to get their girl in a regular elementary school by grade 1 (she was not only caught up by then, but actually advanced in several areas), she was not placed at the level she was at in math or reading. When the parents transferred her to a new school (a private school at that point), they had to physically take the file to the school. The mom had the opportunity to remove any documentation that showed the diagnosis, from the child's file. She was being held back unnecessarily due to her old diagnosis, which no longer reflected where she was at. Keep in mind though that this was in the late eighties/ early nineties. I have no idea how things have changed since!

[dtsmamtj]

I'm resurrecting a super old thread...sorry!

 

I'm still wondering about this. DS has now had his "PDD-NOS diagnosis" for about 18 months. In the mean time he had about 12 weeks of speech therapy, and that has been it. The therapy did absolutely nothing. On paper he progressed to where he was able to do what they wanted him to do, but the therapist flat out told me that she simply didn't know what to do with him anymore. He was not super severe to begin with - just barely qualified for therapy (that we paid for, so it's not like he was receiving free services or anything) because he has poor vocabulary and struggles with figures of speech.

 

The developmental clinic people recommended social skills groups (I think that is what they are called). I flat out told them when they called with a slot that I would pass since he was misdiagnosed.

 

He HAS been diagnosed in the meantime with CAPD. THAT is an accurate diagnosis. He also has some sort of logic something going on, but I don't know what it would be called, so I can't look it up, which means I can't get help for him. (What a crock - that I have to suspect what he has before I can get help for him....)

 

ANYWAY. The report from when he was 13 is wrong, plain and simple. If it were right, I would not be asking about this at all. But since it is wrong, I do not want it to cause problems for him later on.

 

Now that things are computerized, will this faulty report follow him? Do I need to make another appointment to get this diagnosis officially reversed, even though it makes me sick to spend the money to do so since they are the ones who got it wrong in the first place?

 

Or is he OK if we just ignore it all "officially" and I continue to work with him on things (since he does still struggle)?

 

I just don't want not getting his records fixed to come back and bite us in a few years.

 

He also wants to be a Marine, so that is a very real concern.

 

What have you done to help your son in logic, reasoning, etc.? My son sounds very similar to yours. He has a CAPD/language delay diagnosis with a PDD-NOS secondary. If the PDD-NOS was primary my insurance won't touch it, but because the CAPD is primary we were able to get 1.5 years of speech therapy which helped a lot. He currently is in the Cival Air Patrol and wants to be a pilot:glare:

 

T

[Tiramisu]

What have you done to help your son in logic, reasoning, etc.? My son sounds very similar to yours. He has a CAPD/language delay diagnosis with a PDD-NOS secondary. If the PDD-NOS was primary my insurance won't touch it, but because the CAPD is primary we were able to get 1.5 years of speech therapy which helped a lot. He currently is in the Cival Air Patrol and wants to be a pilot:glare:

 

T

 

So interesting. We only have the CAPD diagnosis, but frequently I feel like I'm faced with seeing a lack on connection being made when--to me at least--it wouldn't take much for anyone to make that connection. Does that make sense? I think that would be on the spectrum of logic and reasoning. Sometimes I think it's just me thinking it's strange, but lately even the younger kids are noticing it. I wish I knew what that was all about, if there's a reason or it's as simple as being a different kind of thinker.

[razorbackmama]

What have you done to help your son in logic, reasoning, etc.?

Sigh. I actually have another thread around here somewhere talking about the logic issue. I have to say he has made some huge strides in the last few months. I don't know if some of it is maturation or what. He did go to Chicago with his AWANA group in March, and he seems much more mature since then, so maybe that's it? I am able to halfway carry on a conversation with him now, as long as it's something we're both interested in LOL.

 

My son sounds very similar to yours. He has a CAPD/language delay diagnosis with a PDD-NOS secondary. If the PDD-NOS was primary my insurance won't touch it, but because the CAPD is primary we were able to get 1.5 years of speech therapy which helped a lot.

That is really interesting! My insurance only provided the speech therapy (which didn't do SQUAT) because of the PDD-NOS diagnosis. If he had only had the CAPD diagnosis I doubt anything would have been covered.

 

He currently is in the Cival Air Patrol and wants to be a pilot:glare:

I feel your pain. Currently mine wants to get an NROTC scholarship so he can be an officer in the Marines after he graduates from college. I will faint dead away if he even gets an ASVAB score high enough to enlist. Sigh.

 

So interesting. We only have the CAPD diagnosis, but frequently I feel like I'm faced with seeing a lack on connection being made when--to me at least--it wouldn't take much for anyone to make that connection. Does that make sense? I think that would be on the spectrum of logic and reasoning. Sometimes I think it's just me thinking it's strange, but lately even the younger kids are noticing it. I wish I knew what that was all about, if there's a reason or it's as simple as being a different kind of thinker.

There are some subtypes of CAPD that are logical in nature. You might google auditory associative deficit subtype.

 

I hear ya though...it's hard to tell sometimes if something that is WRONG or just different.:grouphug: