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I am saying they are calling everything ASD these days. You do know that many (most) ASD children have an intellectual disability, right. Not all ASD is high functioning.
Umm, no. One in 59 of kids are diagnosed with ASD, but 1 in 6 have some kind of developmental disability,
https://www.cdc.gov/ncbddd/autism/data.html
So 90% of kids diagnosed with a developmental disability don't have autism. How is that "everything."
1 in 6 kids total or 1 in 6 with ASD?
1 in 6 of all children have a developmental disability. 1 in 59 of all children have ASD.
Where are they getting these numbers from? Actual parents and doctors or the schools who very loosely use educational diagnosis?
The CDC has a complex methodology that reviews case files. It's explained at one the links at the URL above. And on developmental disabilities generally, you can see more here
https://www.cdc.gov/ncbddd/developmentaldisabilities/research.html
I didn't read it that carefully but it looked like these are targeted studies looking for specific data and outcomes and not inclusive of entire populations. It wasn't clear in less I missed it where they got the case files from.
I am not sure why targeted studies bother you, but here's autism data from a general parent survey. It gives a higher prevalence of 1 in 40, but I think that may not be so accurate, since it asks parents if any doctor or health professional ever said your kid has autism. There are cases where autism was suspected, but later ruled out, but parents still could say yes to the question.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5833544/
The studies are fine but reality is most studies are looking to confirm their topic/hypothesis and usually do so. I'm on a new medication, as a good example and most of us were told its safe, few side effects and well studied and many of us (via online) are having serious side effects. Studies don't always tell the entire story as for these drugs they didn't check using them with other medical conditions and other things.
Given the ASD diagnosis has broadened and become more inclusive, we are going to have a higher percentage. Reality is kids who have severe issues, it doesn't really matter what you call it as they need services and their families need supports and if calling it ASD gets them the help they need, I fully support it.
Where it gets hard is kids who are very minimally impacted or grow out of it, who are the kids most people see as they are not in the special education classes and can participate in regular activities, are also called ASD so its very deceiving to many and confusing to those not having a SN child as many don't understand the "spectrum" and the broad term really isn't useful to anyone. When doctors see an ASD label, which we cannot get removed, they walk in with automatic assumptions about my child then in front of my child have a discussion about getting it removed (which I've tried but only the original doctor can and they are no longer there) and it really freaks out my child (talk to me privately about it). There are a lot of unintended consequences for misdiagnosis and those are the ones most of us are talking about at both ends of the spectrum - the minimally impacted and the severely impacted. Most parents on here have kids in the middle where it is clear its ASD and its a non-issue and the question is how best can they help their child be the most successful person they can be.
How do other people know what your kid's diagnosis is unless you tell them?
Agree. I have a kid who has ASD/ADHD-c, most people never think he has any diagnosis and are usually surprised when told. Never encountered any doctors who assume anything about DS.
The difference is we have electronic records and only the original doctor can do a rule out and the original doctor initially refused to continue to get services paid for and then retired so there is no way to change it. With the electronic records, diagnosis and medications pop up at each appointment. So, they see when they open the record to make a new record. That is the impact of one 30 minute appointment/diagnosis when a child is a toddler. All of us have very different insurances and each work differently so you may never have experienced it but we do every time we go to the doctor and that is what some of us are trying to sometimes explain. Our insurance is very ASD friendly so the doctor was trying to help in his own way.
You can have the record corrected even if the original doctor is not available. If the HMO refuses to correct the record, they have to inform you in writing of the reason for your refusal and let you provide a rebuttal that goes in your record. Why don't you try to do this?
45 § 164.526 Amendment of protected health information.
(a)Standard: Right to amend.
(1)Right to amend. An individual has the right to have a covered entity amend protected health information or a record about the individual in a designated record set for as long as the protected health information is maintained in the designated record set.
(2)Denial of amendment. A covered entity may deny an individual's request for amendment, if it determines that the protected health information or record that is the subject of the request:
(i) Was not created by the covered entity,
unless the individual provides a reasonable basis to believe that the originator of protected health information is no longer available to act on the requested amendment;
(ii) Is not part of the designated record set;
(iii) Would not be available for inspection under § 164.524; or
(iv) Is accurate and complete.
(b)Implementation specifications: Requests for amendment and timely action -
(1)Individual's request for amendment. The covered entity must permit an individual to request that the covered entity amend the protected health information maintained in the designated record set. The covered entity may require individuals to make requests for amendment in writing and to provide a reason to support a requested amendment, provided that it informs individuals in advance of such requirements.
(2)Timely action by the covered entity.
(i) The covered entity must act on the individual's request for an amendment no later than 60 days after receipt of such a request, as follows.
(A) If the covered entity grants the requested amendment, in whole or in part, it must take the actions required by paragraphs (c)(1) and (2) of this section.
(B) If the covered entity denies the requested amendment, in whole or in part, it must provide the individual with a written denial, in accordance with paragraph (d)(1) of this section.
(ii) If the covered entity is unable to act on the amendment within the time required by paragraph (b)(2)(i) of this section, the covered entity may extend the time for such action by no more than 30 days, provided that:
(A) The covered entity, within the time limit set by paragraph (b)(2)(i) of this section, provides the individual with a written statement of the reasons for the delay and the date by which the covered entity will complete its action on the request; and
(B) The covered entity may have only one such extension of time for action on a request for an amendment.
(c)Implementation specifications: Accepting the amendment. If the covered entity accepts the requested amendment, in whole or in part, the covered entity must comply with the following requirements.
(1)Making the amendment. The covered entity must make the appropriate amendment to the protected health information or record that is the subject of the request for amendment by, at a minimum, identifying the records in the designated record set that are affected by the amendment and appending or otherwise providing a link to the location of the amendment.
(2)Informing the individual. In accordance with paragraph (b) of this section, the covered entity must timely inform the individual that the amendment is accepted and obtain the individual's identification of and agreement to have the covered entity notify the relevant persons with which the amendment needs to be shared in accordance with paragraph (c)(3) of this section.
(3)Informing others. The covered entity must make reasonable efforts to inform and provide the amendment within a reasonable time to:
(i)Persons identified by the individual as having received protected health information about the individual and needing the amendment; and
(ii) Persons, including business associates, that the covered entity knows have the protected health information that is the subject of the amendment and that may have relied, or could foreseeably rely, on such information to the detriment of the individual.
(d)Implementation specifications: Denying the amendment. If the covered entity denies the requested amendment, in whole or in part, the covered entity must comply with the following requirements.
(1)Denial. The covered entity must provide the individual with a timely, written denial, in accordance with paragraph (b)(2) of this section. The denial must use plain language and contain:
(i) The basis for the denial, in accordance with paragraph (a)(2) of this section;
(ii) The individual's right to submit a written statement disagreeing with the denial and how the individual may file such a statement;
(iii) A statement that, if the individual does not submit a statement of disagreement, the individual may request that the covered entity provide the individual's request for amendment and the denial with any future disclosures of the protected health information that is the subject of the amendment; and
(iv) A description of how the individual may complain to the covered entity pursuant to the complaint procedures established in § 164.530(d) or to the Secretary pursuant to the procedures established in § 160.306. The description must include the name, or title, and telephone number of the contact person or office designated in § 164.530(a)(1)(ii).
(2)Statement of disagreement. The covered entity must permit the individual to submit to the covered entity a written statement disagreeing with the denial of all or part of a requested amendment and the basis of such disagreement. The covered entity may reasonably limit the length of a statement of disagreement.
(3)Rebuttal statement. The covered entity may prepare a written rebuttal to the individual's statement of disagreement. Whenever such a rebuttal is prepared, the covered entity must provide a copy to the individual who submitted the statement of disagreement.
(4)Recordkeeping. The covered entity must, as appropriate, identify the record or protected health information in the designated record set that is the subject of the disputed amendment and append or otherwise link the individual's request for an amendment, the covered entity's denial of the request, the individual's statement of disagreement, if any, and the covered entity's rebuttal, if any, to the designated record set.
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