If you live in the United States and you…
- are currently self-diagnosed/self-assessed as autistic but are considering or wanting to obtain an official/formal autism diagnosis
- are currently going through the process of getting diagnosed as autistic
- have already been officially/formally diagnosed as autistic
…then I strongly recommend reading this and taking it to heart. If you have not yet gotten an official autism diagnosis, I would approach the endeavor with serious caution, and/or consider going outside of the US–and off the official record–for the diagnosis, if you’re seeking diagnosis for your own clarity, closure, or peace of mind, and you don’t necessarily need a diagnosis on record for the purposes of employment or academic accommodations. In short, I urge you to tread carefully, especially in cases where an official, on-record diagnosis may be more “elective” (not meant to be offensive or make light of anyone’s individual situation).
Because there is a federal legislative bill that could theoretically–but very realistically–do the following:
- release your personal mental health information to family members, caregivers, other healthcare professionals, etc, with or without your consent, and/or
- allow family members, caregivers, or (unspecified) “others” to see to it that you comply with prescribed/recommended treatments (again, implying that your consent is not needed here, either).
This legislation, known as H.R. 2646, Helping Families in Mental Health Crisis Act of 2016 (link to bill on Congress.gov), sponsored by US Representative Tim Murphy (Republican from Pennsylvania) although it has 207 co-sponsors from both political parties, was introduced in the US House of Representatives on June 4, 2015.
It has since passed the House, as of July 6, 2016.
It has now been introduced in the US Senate for consideration.
Right now, you may be saying to yourself, “well, the US is behind the times in terms of mental health anyway. This country is in the middle of a major mental health crisis, and legislation that acknowledges and addresses that has been a long-time coming. So…what’s so alarming about a bill like this?”
And I would agree with that statement, and I will answer that question (although solely from the autism spectrum point of view).
I don’t see anything wrong with the majority of the bill itself. It establishes protections, mental health-related grant opportunities, detailed databases of mental health facilities, and other positive points.
However… it only takes one bad apple to spoil a whole basket.
There is indeed a potentially very dark section of that bill, one that could (very realistically) have serious ramifications for people on the autism spectrum. I take issue with two aspects of this bill. Both are nestled in Section 403 (link to Section 403 of the text of the bill); I’ve included a screenshot of the particularly-disturbing text below.
In short, Section 403 (5) relaxes the current HIPAA-required privacy protections surrounding your personal health information (that’s the first of the two serious issues I take with this bill). Currently, the HIPAA legislation of 2003 and the HI-TECH legislation of 2009 ensure that your personal health information (PHI) remains private, except in specific–and reasonable–instances, such as your consent to release the information, a lawsuit/court order/subpoena or other type of court action in which that information would be needed, a payment/financial dispute, third-party contribution to your healthcare expenses (such as health insurance), and the like.
Section 403 (5) of this bill would relax much of that, at least in cases of documented mental health issues. It would now allow your family members, caregivers or “other individual(s) involved” in your care to access those records without your consent. Yes, even if you refuse or otherwise express a strong preference for those records not to be shared, to remain private. All “they” (the facilities with your records) have to do is:
- deem you “incapable” of agreeing or objecting, and claim that sharing your information is in your “best interest”
- deem that your “mental health condition” diminishes your ability to make “rational” healthcare decisions (i.e., if you “think differently”, they can say that you’re “not thinking ‘right’ “) and release your information without your consent anyway
- deem it necessary to release your information to prevent (what they believe would be) “serious deterioration” of “mental health” (side-question: wouldn’t an autism-characteristic meltdown or shutdown be considered a temporary “serious deterioration” of mental health? But we recover from those eventually, without much damage, don’t we? But, how often do we feel truly understood by neurotypical (non-autistic) people? Heh…)
I could see where, in certain circumstances, this action on the part of a healthcare professional would be necessary and beneficial. I realize that there are people who indeed can’t make rational decisions. Those people need to be protected and cared for, and sometimes the family needs to step in. I get that. But keep reading…
The second serious issue I take with this bill is (again, under Section 403), part (6), which permits the release of records for the purposes of “involving a patient’s family members, caregivers, or others involved in the patient’s care or care plan, including facilitating treatment and medication adherence, in dealing with patient failures to adhere to medication or other therapy.” (And many horror stories are there about autistic people being needlessly drugged and/or subjected to potentially harmful and traumatic treatments? Answer: many; Google is very forthcoming.)
This could be interpreted (by individuals, facilities, or even courts) to allow your family, caregivers, or “others involved” in your care or treatment to be informed if you decline or resist medication or treatment and, theoretically, may imply that those people could potentially coerce or even force such medications or treatments on a patient.
At this point, you might be saying, “well, sometimes that’s necessary, especially in instances of a ‘psychotic break’, or other severe breakdown of mental health….”
Maybe that’s true, maybe it’s not. I withhold judgment on issues pertaining to psychosis because I personally have no mental health conditions other than PTSD and Asperger’s/autism, and although mental illness runs in my family (two great-aunts and possibly a grandmother), I’ve had limited contact with the schizophrenic great-aunts and my grandmother’s condition is only speculative at this point. Thus, I don’t feel qualified to render any opinion about other mental health conditions…
…Except Asperger’s/autism. And that’s the crux of all of this, the point of this post. Autistic people would be unfairly lumped in with those with other mental health conditions and subject to the same (lack of) consideration and (questionable) treatment that this proposed law is allowing for.
Why is that? How could this come to be? To answer that, we need to peer back through history, specifically the history of autism and its perceived tie with mental illness.
I’ll write I have written a separate post on this topic, but for the purpose of this post, suffice it to say that in the beginning, autism was assumed to be a subset of schizophrenia, manifesting in early childhood, and only reluctantly and begrudgingly have the two conditions been rightfully separated.
And although it has since come to light that the autism spectrum is actually a neurodevelopmental abnormality and NOT a mental health condition of any kind, the current diagnostic manual used by the US (and other parts of the world) for autism diagnosis–even as of its most current revision in 2013–has refused to un-classify autism as a “mental disorder” and reassign it under a less-stigmatizing “neurodevelopmental” category in the ICD-10.
Which means that anyone receiving a diagnosis listed in the DSM-V is subject to this law and the potential ramifications it may have if passed.
This includes the autism spectrum, and the real people on it.
As long as the DSM continues to include autism, this applies to autistic people.
How did I find out about this??
Well, I stumbled upon it while reading a friend’s blog; it was a comment written by another blogger, in the comments section of a semi-related post. While I like to plug ActuallyAutistic blogs at every opportunity, I’m hesitant to do so here (unless given the specific go-ahead) because of the sensitivity of the topic. The friend’s blog isn’t locked down, and the post is currently active/online, but still…
The comment alerted me to the existence of mental health legislation under current consideration that could indeed take away many of the healthcare rights of US-American autistic people. I found this comment last Wednesday morning (Oct 5)…the day of The Poll. I didn’t want to spread the info without having researched it, which I didn’t have time to do until Wednesday afternoon…by which time, the poll-related discussions were in full-fury. With The Poll and its many conversation threads and side-threads dominating our section of Twitter so strongly, the alert I posted to the existence of this legislation had the similar effect of yelling at a hurricane; it was (understandably) drowned out (lol).
However, it did catch the attention of a few. One Twitter-friend exclaimed, “how has this not been mentioned before??”
Their guess is as good as mine. I don’t honestly know. I know that there are a lot of people watching every move that Congress makes, especially during a US presidential election year, but this somehow slipped by, under the radar. However, it might be that very politically-charged climate that buried the story in the first place; with everyone obsessed with (their hatred or support of) one presidential candidate or the other, it’s fairly easy to remain distracted. I wonder if some of the legislators count on that phenomenon, using it to their advantage? Seems to be a “fine time” to pass questionable legislation–or at least an opportune time.
What is less forgivable is that out of all of the advocacy groups claiming to support and fight for autistic people, the only group I’ve seen mention this legislation and express opposition to it is the Autistic Self-Advocacy Network (ASAN). In Wednesday afternoon’s (brief, by comparison) exchange about this topic, a Twitter-friend mentioned that ” ‘some (puzzle-piece-friendly) groups’ think this is ‘just great’ ” (as the commenter dripped with autism-empathetic sarcasm). 🙂
I’m not here to tell anyone what to do. I don’t force my acceptance of Asperger’s/autism self-diagnosis on anyone else. I’m not here to try to shove an opinion on anyone, speak for anyone, or patronize anyone. I’m not trying to fear-monger or needlessly scare anyone. I’m not going to make anyone else’s decision for them.
The truth is, I’ve begun the process of seeking an formal diagnosis myself.
However, I never considered getting an official diagnosis in the United States. And my current belief is that I will never do so.
Even in March-April of this year, as I progressed through my Discovery and Conclusion processes, I had serious apprehension and reservation about seeking an official, on-record diagnosis in this country.
I had not been aware of this bill yet, and it would be more than six months before I would find out.
But I’m generally intensely distrustful of the US government, and rarely do they enact legislation that I actually agree with. I feel little else but contempt, disdain, and distaste for Capitol Hill.
And pieces of legislation like this are the reason why.
Some would say I’m paranoid. I become concerned about possibilities that are merely theoretical at the time. Ten to twelve years later (sometimes more, sometimes less), my previously-suppositional misgivings often become reality.
Therefore, I’m seeking my formal diagnosis from people outside this country, preferably (although not “dealbreakingly”) from those who don’t use the DSM as their diagnostic reference (double-defense – off-the-US-record, as well as non-DSM usage).
Again, I’m not trying to think or speak for anyone else. I’m just looking out for my fellow Aspie/autistic brothers and sisters. 🙂 ❤
For more information:
- Here’s an op-ed story from US News about the potential privacy issues with this bill (general point of view)
- Here’s a brief from Autistic Self-Advocacy Network (ASAN) (an “autism-lensed” point of view)