Important Question About Official Diagnoses

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I have a question for those of you with official diagnoses: Does getting diagnosed by a professional mean that said diagnosis has to go on your "permanent record" i.e will future employers, tax officials, hospital doctors (see post about the autistic man denied the heart transplant) etc, -- effectively, anyone whose knowing about my condition will cost me more money or deny me access to things -- automatically see on my documentation that I have this condition and make my life difficult? I ask because I am in the process of saving enough money to get a proper diagnosis, and this thought occurred to me. As important to me as knowing the truth is, I'd just as soon go without if it means it's going to make my life more difficult.

I don't think it would "have" to go on. All you have to do is just not tell - that's what I have done Maybe just ask the person who would take the test

There's no such thing as a "permanent record", at least in the US, with the exception of certain criminal convictions. I discovered this when the government gleefully shredded the only copy of some documented I needed. How long an institution keeps records is generally their decision. In the past, these records were in hard copy form and so if they were to be kept for any extended length of time, it usually required the lease of a climate controlled warehouse. With records moving into the digital form, physical space is much less of an issue. Some medical institutions, such as hospitals, for example, will now keep records indefinitely, because they have the ability to. Others might still choose to destroy records after 10 years. Health insurance companies are typically only concerned with your medical history for the past 8-10 years. School districts typically purge everything but grade transcripts after a few years, and the FBI keeps their records permanently.

Concerning a diagnosis of AS, one has to ask, what constitutes an official diagnosis? I can tell you, what one person considers an official diagnosis, another may not. Additionally, there is the issue of AS being abolished in the DSM-V.

If you were to go be evaluated by an independent clinician or facility, and you were to pay out of pocket, chances are, only they would have your records and only you and they would know this, unless you chose to disclose this to another party. If your health insurance pays for it, your health insurance company will be aware you were evaluated for this. If you are evaluated at a facility in a large health care network, such as UCLA, every doctor in the UCLA healthcare network will have access to that record, and it will likely be kept indefinitely unless you requested the records be destroyed. Can those records be access without your permission by third parties? In certain legal situations, for example, certain criminal investigations or court cases, yes.

Can employers and tax officials access these records? Generally no. If these records were pertinent to some type of tax fraud case, then perhaps the IRS could file a motion to access them if they could prove to the judge that it was relevant to the case, but if the IRS looks at anything pertaining to your medical care, I think it would likely be bills or recipes to back up medical expense deductions you have claimed.

So while there is no permanent record, it is something to consider that there is the possibility of such a diagnosis being used against you.

I'm in the UK.
It's on my medical records that I have AS. It's on my doctors screen when I visit him.
When I was in the hospital with a fractured leg it was mentioned that I have AS.
If I ever needed to access social services no doubt they would find out I have AS, and quite possibly consider me an unfit parent.
I have seen a case in the UK, where the child of a mother with AS was taken into care at birth simply because the mother had AS. Possibly this was a one off, but it scares the sh*t out of me. There are definite down sides to being diagnosed. There is a lot of prejudice against people with "learning difficulties" or "disabilities". If you can function without a diagnosis and the possible help you would get with that, then I think personally you should. If there is no point to the diagnosis other than understanding yourself either don't bother or ask whoever does the diagnosis not to put it on your official medical record.

In the US, you are generally protected by a piece of legislation known as HIPPAA. However, I would try to segregate your diagnosing physician from your general practitioner. This way, if a prospective employer requires you to release your medical records to them, all they will see is your general medical history and not your mental health history. It looks clean on the surface, and unless you need a security clearance it is unlikely they will probe further. This is not to say you can be 100% certain they won't, just that it is reasonable to assume they will not.

In the UK, if you use a private diagnostician, it depends on their policy. Some insist on telling your GP who will put it on your records. Others will keep it confidential if you ask them to. If you use an NHS diagnostician, it might be very difficult to keep it off your record.

Legally, AS is a notifiable disability for driving here, so if you don't tell them, you could get into trouble if they found out.

If it went on your record and you wanted to remove it, I guess you could try getting re-diagnosed and bias all your answers towards NT.....shouldn't be too difficult. Just pretend it's not impacting on your life, look at them when they're talking to you, etc. Find a diagnostician who doesn't know or care much about AS, insult his intelligence by telling him you know you've got it, and go blank when he asks why you think you've got it.