The people working on DSM 5 have difficulty getting their story straight. First they said they didn't care what impact DSM 5 would have on prevalence rates of the different mental disorders. Their indifference was so profound that the expensive DSM 5 field trials omitted the simple and obvious step of systematically comparing what rates would be using DSM 5 versus DSM IV.
Last week, the New York Times ran a front page story reporting that DSM 5 changes would dramatically reduce rates of autism. This produced an uproar in the autism community and instigated a petition against DSM 5. A more narrowly defined diagnosis, it was feared, would likely result in much reduced school and mental health services.
The DSM 5 leadership was forced to change its tune, responding to the impassioned criticism in a Medscape piece reassuringly titled "Concern Over Changes to Autism Criteria Unfounded, Says APA."
DSM 5 claims to be making only small changes that will not really effect the prevalence of autism:
We've just moved from the idea that you need 2 criteria from column A, 1 from column B, 1 from column C, and 1 additional criterion that could land in any of those categories to one requiring all 3 manifestations of impairments and social communication and interaction.
And according to the APA:
...field testing has not indicated that there will be any change in the number of patients receiving care for autism spectrum disorders in treatment centers -- just more accurate diagnoses that can lead to more focused treatment.
This makes absolutely no sense. The DSM 5 assertion of rate neutrality is, just on the face of it, completely impossible. A simple comparison of how DSM IV and DSM 5 criteria are written makes apparent that DSM 5 has to be much more restrictive.
The criteria set for Autistic Spectrum Disorder starts with two components: An 'A' criterion whose stem reads "persistent deficits in social communication and social interaction across contexts" and a 'B' criterion defined as "restricted repetitive patterns of behavior, interests or activities". DSM-IV Asperger's also starts with two components: An "A" component whose stem reads "qualitative impairment in social interaction" and a "B" component whose stem reads "restricted repetitive and stereotyped patterns of behavior, interests, and activities". So, superficially at least, they would seem to be equivalent.
But there is a huge difference in the number of items needed to satisfy each of these criteria in DSM 5 vs DSM IV. In DSM-5, the 'A' criterion is met only if ALL THREE of its problems are present (i.e., problems in social-emotional reciprocity, in use of non-verbal communicative behaviors, and in developing relationships). In contrast, DSM-IV Asperger's has four problems listed in its 'A' criterion and Only Two Of Four are required. So DSM 5 requires a 100% hit rate for A criteria problems; while DSM IV requires only 50%. The B criterion works the same way. DSM-IV Asperger's requires only one item be present, whereas DSM-5 requires two.
Here is the math. According to Dr. Brian Reichow of the Yale Child Study Center, there are 2,688 possible combinations of ways to get a diagnosis of autism using the DSM-IV rules. In stark contrast, there are only 6 possible combinations using the new DSM 5 method. Based on logic and math, one would assume that DSM IV autism is definitely broader in its reach and more heterogeneous in its composition. The much narrower DSM 5 definition would (as claimed by APA) indeed be much more specific. But APA can't have it both ways -- the flip side of specificity has to be lower rates of prevalence.
The extent of narrowing will vary in different real life situations depending on the mix of severities. The exclusion of current cases would be less an issue in tertiary care settings dealing with the severely impaired -- because they more easily meet all three of the DSM 5 'A' and two 'B' criterion items. But the rates of Asperger's should drop precipitously under DSM 5 rules.
And that is precisely what Dr. Volkmar and his colleagues at Yale found in their empirical, head to head comparison of DSM IV and DSM 5. Only 45% of those who met any DSM IV diagnosis of autism (ie of Autistic Disorder; Asperger's; or Pervasive Developmental Disorder, not otherwise specified) met the more demanding standards of DSM 5. Twenty-five percent of those who get the diagnosis of Autism in DSM IV would lose it in DSM 5; 75% of those with DSM IV Asperger's are undiagnosed in DSM 5; and 80% of PDD-NOS. While this study is admittedly preliminary, I would give it much more weight than any of the empty DSM 5 reassurances.
DSM 5 derived its proposed criteria set from unpublished, not yet peer reviewed, tertiary care data that may not generalize at all well to the wide range of settings in which the diagnosis of autism must be made. This is clearly an inadequate foundation on which to develop a new definition of autism.
And it is false reassurance to appeal to an un-posted field trial that was indifferent to prevalence and made the stunning mistake of not doing a head-to-head comparison of DSM IV vs DSM 5. Moreover, the field trials were conducted in non-representative academic settings where the impact on rates is likely to be very different than it will be in the real world.
My previous blog expressed the concern that rates of autism have been inflated because of the loose DSM IV definition and also the way it is used because of a too-close linkage to school services. I suggested the need for more precise diagnosis, but also a reduced authority for DSM in school service requirements. A kid who needs help shouldn't lose it just because psychiatric diagnosis in this area remains so imprecise. I would welcome a more accurate DSM 5 definition of autism -- but the method of deriving the new DSM 5 criteria is suspect and its claim to be rate neutral seems simply absurd.
Allen Frances is a professor emeritus at Duke University and was the chairman of the DSM-IV task force.
Lawrence Diller, M.D.: Psychiatric Diagnosis by the People's Choice
Allen Frances: How Does Someone Outgrow Autism?
Your posts about how you can tell who is or isnt autistic shows nothing more than your own ignorance. Next time, make sure you actually have something to contribute rather than attacking posters.
Imagine real doctors VOTING IN whether cancer exists or not and even if it didn't, to force those they felt like labelling to have chemo and radiation for power, profit, status and greed?? This is what psychiatry does and its so called treatments are more deadly. Of course, there is no comparison between real medicine based on science and the fraud perpetrated by the mental death profession though they pretend they are the same with outrageous lies. In real medicine, there is the actual lesion to be observed by all while in bogus psychiatry, there is only the junk science bible of the DSM with stigmas VOTED in by the white old boy network power elite with most if not all having ties to BIG PHARMA. There is no evidence that any of these bogus stigmas exist nor any blood, x-ray or medical test to proven anyone has these life destroying stigmas.
"However, disorders like depression are supposedly diagnosed in about 1/10 people, or about 10% of the population will get depression sometime in their life."
Being diagnosed with depression and being depressed have nothing to do with each other. You can be depressed without being diagnosed and, probably more rarely, you can be diagnosed with depression without being depressed (e.g. when you are grieving, which is a normal response).
See, how easy it is, to get the most trivial facts wrong? And you are criticising the APA based on what? Hearsay?
"It seems odd that the APA would pretty much say that too many people are getting diagnosed with autism but not restrict disorders like depressionÂ."
Or it is about the numbers? Would you feel less guilty if there were more kids with the same problem????
I have friends with autistic kids. Real autistics kids, not borderline. They clearly fall under DSM-V just as they did under DSM-IV.
Just because you can't see it, however, does not mean that I am not differently-abled.
I received government services under the ADA to help me get a job. This is the first time in my life that I managed to get and hold onto a job on my own, and it seems likely to me that I would not be working today if I hadn't received the services that I did.
It seems all too likely to me that I would not fit into the narrow definition of autism being proposed for the DSM V, and therefore would be ineligible to receive services, even though I clearly do have neurological disorder that should qualify as a disability.
Tell me again why you think that makes sense, please.
Needless to say, I am not autistic, graduated at the top of my class in high school, had a very satisfying career in science and have perfectly functional adult relationships. I just happened to be a loner as a child who greatly preferred interacting with matter over interacting with people.
The same would be true for half a dozen other scientists I know, potentially including someone who was on the short list for the physics Nobel but grew up in a troubled environment as a teenager. A highly gifted mathematician I know (he finished his doctorate in six months, something that usually takes 2-3 years, and may have (re-)discovered a closed form integral others have missed since the 19th century) would fall squarely into the DSM-IV definition.
The DSM-V would not include ANY of these people, not even in the broadest possible interpretation.
Needless to say, psychiatric criteria that can include odd but highly functional people under a category that is meant to qualify highly dis-functional individuals that need constant help from their environment is close to being useless.
Yes, there is a world of difference between kids that are loners and slightly socially awkward, and those that are autistic and high-functioning.
It may even be true that you, not being a psychologist, could easily misinterpret the criteria in the DSM IV and how they're meant to be applied. The truth is, however, that the difference between you having an odd day or two growing up when you acted a bit strangely and a constant, chronic, permanent neurological condition with multiple symptoms and behavioral cues is an extreme one that any well trained psychologist would be able to see if they took the time to evaluate and observe.
Don't you understand how offensive it is to someone like me who has suffered their entire life with this condition for you to act like it's nonexistent?
I was diagnosed as a young adult with Asperger's syndrome. Understanding that diagnosis and what it meant has helped me to learn how to cope with it immensely. Without that diagnosis I would never have learned to function properly in most social situations. I would never have gotten and held onto a permanent job. I would not have been able to be the exemplary citizen I am today if not for that diagnosis.
No, I couldn't have... but I could have met the criteria of the DSM-IV. Which invalidates the criteria of the DSM-IV. And that was my point.
"Yes, there is a world of difference between kids that are loners and slightly socially awkward, and those that are autistic and high-functÂioning."
But it is not well defined in the DSM-IV... same is true for several of the personality disorder definitions in there. They just don't work very well at the edges.
"It may even be true that you, not being a psychologiÂst, could easily misinterprÂet the criteria in the DSM IV and how they're meant to be applied."
That's the hallmark of poor definitions... that you need a specialist to know how to apply them correctly, who knows what's wrong with the language and who can correct for it.
"The truth is, however, that the difference between you having an odd day or two...."
And exactly that difference needs to be reflected in the language of the diagnostic manual. That's all I am saying.
I do. But I happen to be one of those "odd" individuals who care more about getting it right than about not offending anyone who thinks that they have a right to not be offended by facts.
"I was diagnosed as a young a... if not for that diagnosis."
And it happened because of the specific words written in the DSM and not because of the care of the people around you who made that happen????
Don't you think you are giving the book a much larger role here than the people who really helped you? Or do you actually think that those individuals would have let you simply fall to the wayside if the book had some other language in it? I think now YOU are insulting those that you have to thank for for the quality of your life.
And if that last remark makes me politically incorrect, so be it.
The problems faced by people with autism and their carers are not served by excessively complex diagnostic criteria, sloppy journalism or misinformed decision makers.
You don't have to be functional "enough". The TWO of you have to be functional in a relationship TOGETHER. That's a whole different dimension than what is contained in the DSM. It doesn't matter where you are in the DSM (and EVERYBODY I know is somewhere in there), as long as you find the right partner.
"...job interviewsÂ..."
What kind of jobs are you interviewing for? Technical? Are you good at what you like to do? If yes and there is demand for your skills, you should be able to find an employer, no matter what your social skills. OK... so you won't be selling real estate or designer women's clothing... neither will most of us.
"Other people are completely confusing to me."
They were confusing me, too. They still are. I have decided to ignore that and to accept the 99% of all people are idiots. The rest is AN ACT that pretends that you don't know better and that you are actually taking them seriously. OK... pulling that off is the hard part.
You shouldn't trust anyone... until proven otherwise. Trust is a matter of people PROVING to you by actions that they are to be trusted. Until those actions speak for themselves, everything they do is to be taken with a grain of salt. As long as you can make sure that nothing they do will hurt you too badly, and that is an intellectual exercise, you can manage. We all do it that way. You may think that many of us have some level of control over the emotional world of others, but that's not true. Part of my daily exercise is to position myself in my day to day dealings with a number of people. It's like a chess game and it is completely on the intellectual level. The less emotions you can waste on that, the better.
"I can never tell if someone is joking or serious."
Most people have a very poor sense of humour. If it's insulting to you or anyone else, it's not even a good mannered poor sense of humour.
"...or whether people are lying or telling the truth, at least not based on nonverbal communicatÂion or body language"
Most people can't tell that. You are not alone.
However, another point to clarify...you don't stop having an invisible disability because you graduate from 12th grade. There are alot of needed adult services which many individuals will not be able to access because they do not fall under the DSM. The question is what will happen to them and how will society react when they fall through the cracks? Afterall they are now, according to the Psychiatric Gods, have nothing wrong and should not have any problems.
The reality is that noone is that attached to the autism label that they could not function under a different diagnosis. But what it does do is redefine a huge community of people who have finally found the ability to understand themselves. They have denied people the civil right to define themselves. They have removed once again the fact that those in the autistic community are first and foremost humanbeings. The psychiatric community has no right to do that.
Community resources can be accessed without the DSM criteria, contact a special education advocate within your state or county to see what services are available and what criteria needs to be met to be eligible for post-graduate services.
While related school services are dependent on what eligibility criteria the student is under, fact is they will still receive services that are appropriate and individualized. Talk to your school district if you are having problems with services within special education. There are laws in place to protect you as a parent.
My last thought. Don't let what the psychiatric community dictate the definition of "self". The community of individuals that were previously identified with autism or asperger's still exists. Their personalities, individual endearing traits, etc still exist too.
I'm sure there will be much more out there on this topic, and conversations like these will be abundant.
I am afraid that you are also wrong about special educations services. Autism is different than OCD which is different then sensory processing, and there are different therapies associated with each. They are not interchangeable disabilities. In fact there are regs in some states requiring certain therapies for autism that will not be given to those with other disabilities. Try getting ABA therapy if all your child is listed with is a speech and language delay.
School districts depending on their state have different criteria that needs to be met. They only need to use the IDEA as the baseline, that is all. It is also a very open ended baseline. Every state is different and every state has its own regulations. There are even children to this day with DSM dx that already fall through the cracks because they are not disabled enough. This will not change and will only get worse. That btw is the law.
(con't)
In fact, upon entering post secondary and the adult world, they require you to have a reevaluation and will give you a huge list of tests they want preformed. It does not matter what services you may have received beforehand since the ADA not the IDEA is relevant in post-secondary education and all they have to do is provide "access." Each school has its own definition and while there may be some typical accommodations given, they are not across the board. That is why when you go to post graduate education you need to check with the disability office to see what services are given for what disabilities. It even varies to the extent that some college do not provide notetakers, some do. Some colleges do not even believe in extra time on tests..ppl really need to do their homework if you want to go to post secondary education.
Then there are adult services. Most states have a very strict requirement to receive services. There are regulations what the state looks for and quite frankly due to the economic situation most of these services have been severely curtailed nationwide. This is beside the fact that it is not easy to receive social security disability benefits nor medicaid.
con't
If you have a problem with disabled people not getting the help they need, you have it because of the GOVERNMENT definition of who requires help (which will always be as restrictive as possible, given the amount of lobbying by the healthcare providers), not because of the DSM.
As far as the definition of "autism" you cannot suddenly change a definition of a person because you decide you don't like the number of people who fit into a category. Its as if you decide that too many people have the "plague" so to stop an epidemic instead of trying to figure out what causes the plague or find a cure, you simply change the definition of what plague happens to be and voila, you have suddenly cured the epidemic. That is what is happening in this case with "autism."
As far as receiving services from the government, it all has to do with the DSM. The DSM is what the government and healthcare providers use to decide if someone has a disability in the first place. You obviously have no idea how the system works at all.
The author would have been well-advised to make that clear.
It will introduce a more reasonable definition of autism, so no longer will every kid with an odd trait be called autistic, and so the strong growth in autism diagnosis will probably abate.
What they aren't understanding is that PDD-NOS, higher functioning Autism, and Asperger individuals will now just ride multiple diagnoses for clinical services. It's ABA services that are wracking up insurance bills with all the new recent laws (wonder who's pocket the APA's in, now you know). However, ABA services are the primary intervention that help high functioning kids on the spectrum, with early intervention, to be 100% independent. Now parents will have to be creative to secure the necessary services with a diagnosis of ODD, OCD, speech delay, Anxiety Disorder, ADD/ADHD, and SID (if it gets a DSM criteria this round), because these will be the new labels for ONE child. Therefore, we will see an increase in all the aforementioned diagnosis now!
Has a new petition been started? Is there a contact number we can bombard them at or email?
P.S. One of the earliest articles discussing this quoted the chairman as saying it will "reduce costs", which should be an indicator of what this change is ALL about. It's not about the welfare of those it could impact, but the dollar sign they represent!
But that's not exclusive to autistic kids. The very same thing can be said about all outspoken patient interest groups and individuals who have very little interest in anything that goes beyond the politics of the disease.
I would suggest that everybody who claims to have a stake here focus on the real needs of the kids rather than this kind of nonsensical bickering about the impact of definitions. You know what? The kids who have a problem couldn't care less what you call it. They just need help and support.