The DSM-5 Austim Diagnostic Criteria-what do you think?

[GraceLuvsWDW]

What do you think of the proposed changes?
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#


I like that they added the sensory issues. Do you think the severity levels are adequate? I could see how changes in environment might make a difference in the severity.

 

[jodifla]

I think this will put a whole lot more children on the autism "spectrum."

I think that the word "deficits" not being defined is a very, very bad idea.

It seems to me the more they try to define it with each subsequent DSM-V, the worse they make it for children.

 

[disfan07]

It depends. We are learning about this right now in developmental psychopathology.

I dont believe that each subsequent DSM has made it worse for children. In fact, comparing the previous DSMs, the current DSM (DSM-IV-TR) has actually been very good for children and adolescent diagnoses.

I dont believe that diagnosing children and adolescents via the DSM will ever be as accurate and reliable as diagnosing adults. That is one of the big issues with the DSM. We keep getting more reliable and accurate with diagnosing adults and we are trying to play catch-up with diagnosing children.

One of the bigger problems is the medical model used for creating and diagnosing psychological disorders. While it is a great base for it, it is not the end all and some professional still use it as the only way to diagnose children.

Luckily, that seems like it is changing because we are learning less and less about the medical model and more about the multiaxial system and using not as mnay concrete methods. The problem is, to be covered by insurance companies and to be used by professionals, they have to be empirically based so there are limits as to what can be done. There has to be some concrete evidence to test for reliabiity and validity of the methods.

Obviously, this is not an opinion coming from someone who has a child that has been diagnosed. This is just from what I have expereinced by going for my psychology degree and what we have been learning so far.

 

[bookwormde]

At first look it is a great improvement over 4 or the even first draft of 5 although it still completely misses the EF component, although since there is a separate criteria for ADD/ADHD, it is addressed at a level as long as a child can be classified as both (so that inappropriate methodologies to treatment are not used).

I do not think this will qualify additional children for those who have been seen by a highly qualified clinical group, but will help clinicians with less competency have a better chance of an appropriate diagnosis (although with the higher functioning kids they sill will need to have gained training and experience under in a highly qualified clinical group).

I especially like the explanatory rational sections which speaks very directly to the faults with DSM-4 and the severity charting which will end the "it does not look like classis Autism" issue (for this clinicians who take the time to read it).

(apologies to disfan07 since it sound like you are in one of the better program, unlike that vast majority of your predecessors)
As with most of these issues I have to "live with it" for a while to really pick it apart.
Considering it is created by Psychiatrists who are disease/affliction (instead of understanding it from the evolutionary genetic variation modal which the scientific community has adopted) and treat the manifestations (instead of the underlying EF and social skill and sensory differentials), based in their training and are probably the least qualified to understand the boarder impact of ASD it is amazingly good.

As with most of these issues I have to "live with it" for a while to really pick it apart

Jodifla
I agree that "deficits" is a very imprecise and inappropriate term for understanding our kids, since differentials which "limit and impair everyday functioning" would be much more appropriate, but in reality it is "insurance language"

bookwormde

 

[disfan07]

As with most of these issues I have to "live with it" for a while to really pick it apart.

I agree. I dont think you can really pick apart something like this until it is seen at work. Until it has been implemented for a while, I dont think anyone truly knows how or what impact it will have on children and adolescents.

Taking Abnormal Psychology and Developmental Psychopathology really opens up your eyes to what is good and what is not so good in teh field of Psyhcology. When it comes to a diagnosis, I believe the medical model approach is one of the major issues. At least they don't consider children to be mini adults anymore like they did originally in the DSM.

 

[jodifla]

The caregiver exclusion is also very worrisome. If you have a connected, socially reciprocal relationship with a caregiver, Dr. Stanley Greenspan considered that s pretty definite sign it was NOT autism.

Children with severe language delays/disorders can't keep up long conversations....it is in the nature of the disorder. And when they meet strangers, they are naturally wary and shy. They don't make eye contact (they don't want the failure of not being able to converse -- and when you look at someone, that's the first thing they expect...conversation). They often can't hear well in crowds so don't try to join in big groups.

But have just a couple people around, and they are able to keep up with the conversation better. They relax, warm up, show their true colors quickly.

 

[jodifla]

It depends. We are learning about this right now in developmental psychopathology.

I dont believe that each subsequent DSM has made it worse for children. In fact, comparing the previous DSMs, the current DSM (DSM-IV-TR) has actually been very good for children and adolescent diagnoses.

I dont believe that diagnosing children and adolescents via the DSM will ever be as accurate and reliable as diagnosing adults. That is one of the big issues with the DSM. We keep getting more reliable and accurate with diagnosing adults and we are trying to play catch-up with diagnosing children.

One of the bigger problems is the medical model used for creating and diagnosing psychological disorders. While it is a great base for it, it is not the end all and some professional still use it as the only way to diagnose children.

Luckily, that seems like it is changing because we are learning less and less about the medical model and more about the multiaxial system and using not as mnay concrete methods. The problem is, to be covered by insurance companies and to be used by professionals, they have to be empirically based so there are limits as to what can be done. There has to be some concrete evidence to test for reliabiity and validity of the methods.

Obviously, this is not an opinion coming from someone who has a child that has been diagnosed. This is just from what I have expereinced by going for my psychology degree and what we have been learning so far.

As the parent of a misdiagnosed child (well, the school TRIED to misdiagnose him, but we wouldn't let them) I view things quite differently.

I'm on message boards with hundreds (and our last message board literally had thousands -- we moved to upgrade) of parents of late talking children, most of whom have been misdiagnosed with autism or PDD-NOS. It's a nightmare for these parents, because the treatments that tend to work in autism DON'T work with children whose problems all stem from their lack of receptive language. Most of these children also have some other quirks...but what they don't lack is the innate social ability. But if you try to assess them in an hour, you'll likely see an anxious child who shuts down, because they KNOW you are testing them. They KNOW they are failing, so they'd rather not do anything at all. The schools then bully and threaten the parents and tell them that if they don't accept their autism dx, their child will get no help at all. I've heard this literally countless times.

Schools are often handing out the wrong "educational" diagnosis, but some major autism centers hand out wrong Dxes as well.

The word "deficits" (and the word deficits would indicate to me ANYTHING off the norm) is what makes this DSM such a bad idea to me. It WILL be abused unless they put in enough qualifying material to delineate what the word "deficit" means.


As our late talkers grow up, it becomes obvious that they aren't autistic. But parents tell us they regret the time they anguished over their child, running from therapy to therapy, losing their precious childhood.

 

[chskover]

My daughter was diagnosed with ADHD at the age of 5. This was after taking her to many doctors. This was also followed with "we think she is slightly autistic, but can't diagnosis her with that." She was 16 yrs old when a Psychologist told me she had Asperger. After much research, it was like our eyes were finally opened. That was a major turning point for us in understanding her condition. She is now 24 and a mother of twin girls and doing great. To bad I wasn't told sooner or we might have been given more help.

 

[disfan07]

The word "deficits" (and the word deficits would indicate to me ANYTHING off the norm) is what makes this DSM such a bad idea to me. It WILL be abused unless they put in enough qualifying material to delineate what the word "deficit" means.

I understand your concerns but I still dont think anyone can say that it WILL be abused or for certain how it will actually impact anyone until it is used. I believe that is really jumping the gun.

The DSM is really not cut and dry. It is not completrely straightfoward. There are a lot of things in it that can only be completely understood by a professional. So while I dont doubt that you probably know a lot about it, there are also probably somethings that you dont know about it as well.

 

[clanmcculloch]

I understand your concerns but I still dont think anyone can say that it WILL be abused or for certain how it will actually impact anyone until it is used. I believe that is really jumping the gun.

The DSM is really not cut and dry. It is not completrely straightfoward. There are a lot of things in it that can only be completely understood by a professional. So while I dont doubt that you probably know a lot about it, there are also probably somethings that you dont know about it as well.

You know, that was rather condescending. Some of us have taught many a professional a thing or two (or 20 or 50) about autism. As a future professional, I really hope you learn to actually listen to your patients (or patients' advocates) rather than assuming that they can't comprehend the nuances of autism (that's what you said when you state that a lot of things can only be completely understood by a professional).

Many of us have first hand experience with professionals who didn't understand the old criteria so we're pretty skeptical that these same professionals will take the time to understand the new criteria. Far too many professionals (psychiatrists, neurologists, psychologists, etc) who claim to diagnose and treat kids on the spectrum come up with their own interpretations for vague concepts like these.

Based on the new criteria, I can definitely see many professionals saying that my 13yo is NOT on the spetrum because her social-emotional reciprocity deficit is not as described in that link. She does have an abnormal social approach but she can carry a very mature back and forth conversation about many topics and is extremely interested in learning about all sorts of topics even they're not her own interests and is very VERY expressive and initiates social interactions quite frequently. Obviously I'm just picking apart A1 but that's the one that IMO could be a huge sticking point for her. She does definitely have deficits (her IEP has several goes to work on furthering her deficits every year so clearly they're visible to her special ed team and not just me) but if a professional just looks at what's written here rather than actually understanding the full spectrum of social-emotional deficits and expectations then she would not be diagnosed as being on the spectrum. I'm sure that there are professionals who will "get" it just like the psychologist, SLP and OT who helped to diagnose her but they did so based on the old criteria which didn't spell it out correctly either. I've also experienced psychiatrists and neurologists and psychologists who pulled out the DSM-IV and looked at it like an all inclusive checklist and said she's not on the spectrum because she doesn't look like the exact narrow picture described by the narrow example in the DMS-IV. The professionals who DO focus their careers in autism treatment all agree that DD13 definitely has Asperger Syndrome.

Look, I know your intentions are good. I agree that there's no way to know if this will be better, worse or no different for kids on the spectrum until we see how it gets implemented. I'm just very skeptical that the human beings who are using this are going to look at it any differently than they look at the DSM-IV. Any professional who's diagnosing autism should have an understanding of autism that does NOT rely solely on the DSM-V any more than they should have relied solely on the DSM-IV. I'm really glad to read your description of the training that you're experiencing. It does give me some hope that future professionals will be better equipped to understand autism than many of the ones that many of us have encountered.

 

[bookwormde]

There are 2 types of social skills and competency, familiar (family/caregiver) and societal, for our children who are cognitively intact a very high percentage have reasonably good familiar skills, their innate societal skills, not so much.

I am familiar with Dr. Greenspan and now his son's work and they make a clear distinction between classically autistic individual and higher functioning and I have had a chance to ask about this very issue at one of the seminars.

This is exactly why they excluded the familiar situation (caregivers) since otherwise you would miss the vast majority of higher functioning kids.

bookwormde