Will the New DSM Cause More Harm Than Good?
DenvrDave
Veteran
Joined: 17 Sep 2009
Age: 58
Gender: Male
Posts: 790
Location: Where seldom is heard a discouraging word
The DSM is being restructured in many important and possibly profound ways, including the way autism spectrum disorders (ASDs) are defined and diagnosed. All medical doctors are held to the highest ethical standards, including the "cause no harm" clause in the hippocratic oath.
The question is: In your opinion, will restructuring the ASD portions of the DSM cause more harm than good?
There are benefits to AS being a part of a broader terminology of "Autism Spectrum Disorders".
Money and services that is earmarked for "autism" will also benefit people with AS that may been previously denied.
It is less difficult for the variety of professionals that work with children to understand what "aspergers syndrome" is now that is under an umbrella turn. In general, there will be less searching for resources, less confusion and more understanding for professionals.
It makes more sense.
It will help researchers that do medical/genetic and other hard sciences. If something can be found genetically or in the brain in a person with classical autism, then presumably it can also be found to some extent in aspergers.
Also helps consolidate advocates for political purposed.
On the other hand:
They are clearly trying to get rid of the "boom" of autism by narrowing the qualifications. They want to make the prevelance consistent and predictable.
Pyschologists use a variety of criteria and tools - so maybe it does not matter that much.
The criteria is too narrow. there will be less people "self-diagnosed" if they simply read that criteria.
To be perfectly honest, I was really disappointed to hear about the elimination of Asperger's and being placed on the Autism scale. I recognize that high-functioning autism and asperger's are similar, but I took some comfort in the distinction. This is not to say I have a "better than thou" attitude about it, but I have understood asperger's to be part of my identity. To have that suddenly go away is very alarming. People have mentioned on other boards that the stigma of autism is gone and that transitioning from asperger's to highly functioning autism is no big deal. Wake up people, it's a big deal. There is definitely still a stigma. Children with autism don't face the stigma like adults do. I'm not trying to say that a stigma of any kind is right, but denying its existence is naive. I have only told a select group of people that I have asperger's for fear of ridicule. Now that I am seen as "autistic," I won't tell anyone.
I can understand that. I am technically epileptic, but my seizures are under control. I haven't had one since 1976. Still, if I ever happen to mention that people start looking at me a little funny, as if I might cough on them and then they'll have a seizure, or as if I shouldn't be driving a car or whatever because I might have another seizure.
The stigma is there for adult NTs with epilepsy, so it's not a stretch of the imagination to consider that it likely exists for autistic adults, too.
SPARTAN-113
Yellow-bellied Woodpecker
Joined: 1 Nov 2008
Age: 31
Gender: Male
Posts: 55
Location: Baton Rouge, La, USA
Money and services that is earmarked for "autism" will also benefit people with AS that may been previously denied.
It is less difficult for the variety of professionals that work with children to understand what "aspergers syndrome" is now that is under an umbrella turn. In general, there will be less searching for resources, less confusion and more understanding for professionals.
It makes more sense.
It will help researchers that do medical/genetic and other hard sciences. If something can be found genetically or in the brain in a person with classical autism, then presumably it can also be found to some extent in aspergers.
Also helps consolidate advocates for political purposed.
On the other hand:
They are clearly trying to get rid of the "boom" of autism by narrowing the qualifications. They want to make the prevelance consistent and predictable.
Pyschologists use a variety of criteria and tools - so maybe it does not matter that much.
The criteria is too narrow. there will be less people "self-diagnosed" if they simply read that criteria.
Self-diagnosing people can often be misled or incorrect in their asessments even now. However, I fail to believe that autistics, for all the contributions (most notably those of physics and philosophy) are such a small portion of the human population. To be completely honest, I don't think civilization could exist without our... 'Unique' mindset (in other words, when people are faced with a problem they don't know how to fix, quite often an autistic comes up with the answer). I actually think that perhaps we evolved our 'disorder', in which case there would be many more autistics than currently thought. So if politicians wish to make it seem as if autism were some sort of 'plague' that is finally being contained, not only are they foolish in such thinking, they are wrong to do so.
_________________
I won't give up. I can't give up. Death is not the end for me.
SPARTAN-113
Yellow-bellied Woodpecker
Joined: 1 Nov 2008
Age: 31
Gender: Male
Posts: 55
Location: Baton Rouge, La, USA
I agree 100%.
_________________
I won't give up. I can't give up. Death is not the end for me.
Money and services that is earmarked for "autism" will also benefit people with AS that may been previously denied.
I disagree. The whole purpose for folding Asperger Syndrome into the broader category of ASDs is so that those with AS/HFA can now be classified as 'High Functioning' or as having 'mild' autism, meaning they will be considered less likely to qualify for assistance of any kind. 'High Functioning Autistics' grow up to have successful careers and have movies made about them, they don't need Disability assistance.
Again, I'm afraid that's overly optimistic. It means kids with AS/HFA are going to get tossed into remedial classes with Low Functioning kids where they will grow bored and stagnate and just learn to HATE school. No government is going to create TWO programs for ONE disorder. Politicians can't wrap their heads around an idea like that - not even in two thousand pages.
It will help researchers that do medical/genetic and other hard sciences. If something can be found genetically or in the brain in a person with classical autism, then presumably it can also be found to some extent in aspergers.
Again, IMHO, it makes far less sense. Its already looking like different forms of Autism have some genetic markers that are common and some that are NOT. Ultimately, there's every possibility that there may be two or three or more forms of Autism that are all medically and genetically quite different. In that case, this convenient feel-good 'spectrum' umbrella is going to become instantly as obsolete as it is already functionally useless. It sounds good, but it doesn't really tell us anything concrete. Once the concrete knowledge is available, there may not be a 'spectrum' at all.
OooOoOOoOooohhh, don't even get me started. Advocates? What F'ing advocates? There's nobody out there who gives a Rat's patoot, believe me, I've looked. Plenty of people who'll use your handicaps as fundraising tools, but that's all. Need help? You're on your own.
They are clearly trying to get rid of the "boom" of autism by narrowing the qualifications. They want to make the prevelance consistent and predictable.
That's my biggest concern - there's only a 'boom' because more people are being diagnosed - BEING DIAGNOSED - not because there are more people (gasp!) CATCHING AUTISM. I was diagnosed two years ago at the age of 49 - I didn't just come down with a case of autism after somebody sneezed on me. I finally found out the name of the handicap I'd had for half a century.
What I fear is that if they narrow the qualifications too much, a lot of people who need help are going to fall through the cracks and end up being suicides, or homeless zombies because they can't make it without assistance.
Well, I don't mean to be a jerk, 'cause I was self-DXd before I sought a formal diagnosis, and self-diagnosis is fine if it makes you feel better, but if that's all you need, I'm not too concerned for you. If just knowing and having that explanation makes you happier, great - I'm worried about those of us whose entire lives are such a train wreck, that we may sound like professors, but we're as adept at surviving in the real world as the average neurotypical 12 year old. We genuinely need help, and its hard enough to convince someone you need it, without being written off from the git-go as "High Functioning" and 'a Mild Case'.
I mean, I'll be the first to tell you I'm not thrilled to be diagnosed with something that everyone hears as ASS BURGERS, but if it helps the people at Social Security understand that I have a Disability with a specific name, and not just a 'mild case' of something, then I'll live with it.
This whole situation actually has me quite anxious. I don't like it one bit.
Frusturated but unsurprised, I've yet to meet a psych who didn't seem surprised when I told him/her about the incredibly negative consequences of telling ANYONE that you were on the autistic spectrum and what a comfort it was to be able to say something else and explain it in my own way.
And to be quite frank, anyone who would deny a difference(for better or for worse) is just being nice. The language development rate, for example, is almost always quite different.
_________________
I am autism.
I was fired when I disclosed Asperger's to a boss. Trust me, AS has stigma, too. The solution is not to switch words around, but to address the stigma itself.
_________________
Reports from a Resident Alien:
http://chaoticidealism.livejournal.com
Autism Memorial:
http://autism-memorial.livejournal.com
As to the poll question, the more I think about it the less sure I am about the outcome of the proposed changes. I think the Devil will be in the details -- what criteria will be used to differentiate "mild" from "moderate" from "severe."
As it is now, AS is understood as "mild," even regardless of actual need. It includes a Silicon Valley programmer with a spouse, mortgage, 2.3 kids, and 25 years at the same job with good pay. And also the person who can't hold a job for more than a week and has been homeless off and on (or just "on") for most of their life. And everything in between.
What causes them to have the AS dx, rather than the more "severe" HFA (not that this is inherently true, but that that is how the terms end up being used in terms of assistance (as I understand it)), is lack of language delay, or being dx'ed past school-age (even if there was a language delay).
And some dx'ed with autistic disorder as kids end up extremely high-functioning, while others will need a lot of help.
If the new criteria end up re-creating the same situation -- groups that don't meaningfully tell you who needs help (and maybe what kind) and who doesn't, the whole thing will be a wash.
I am worried that they will tie "mild" to something like being able to speak -- which, for example will leaving speaking autistics with serious executive functioning, sensory issues, or employment difficulties out in the cold (as it is now). (Not to mention that many who can technically speak can have it break down under stress.)
OTOH, if they do look at a wide swath of issues, executive functioning, sensory issues, speech, receptive communication, it could lead to more appropriate categorizations (more appropriate help), especially for people who have AS diagnoses.
I hope for less theory ("triad of impairments") and more practical reality, i.e. "can't stay employed/clean/fed without help," "fluorescent lighting causes vomiting," "can speak most of the time, but not always," "can't speak, but not severely impaired or in need of much help."
I feel it's important to point out that the proposal to change how AS is classified in the DSM is at present, just a proposal, a draft. DSM-V isn't scheduled to be released until 2013. Until then the APA is taking comments on the draft, and these submissions may result in changes to the their proposal. The changes are not set in stone... yet.
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