The Proposed DSM-V Changes: Is it a Step in the Right Direction?
Lately, the online communities have been talking about the recently released proposed revisions for the the Diagnostic and Statistical Manual of Mental Disorders, version 5 (DSM-V). The proposed revisions embody quite a few differences in the diagnostic criteria for disorders previously under the umbrella of Pervasive Development Disorder (PDD). Available online for comment, the two main concerns appear to be vague wording of the diagnostic criteria and whether or not Asperger Syndrome should remain as a separate diagnosis.
Diagnostic Criteria
Under the DSM-IV, each subcategory of the PDD spectrum was fairly specific in listing criteria for the diagnoses. However, despite that, many children who did not fit the subcategories of Autistic Disorder, Asperger's Disorder or Childhood Disintegrative Disorder were given the diagnosis of Pervasive Development Disorder - not otherwise specified (PDD-NOS). PDD-NOS has included many presentations of the disorder. Over time, the number of children receiving PDD-NOS has been increasing. It is not surprising that the DSM committee felt that something was amiss. "Not otherwise specified" is far from informative.
The proposed changes to the DSM-V include merging Autistic Disorder, Asperger Syndrome, Pervasive Development Disorder - not otherwise specified (PDD-NOS) and Childhood Disintegrative Disorder into the classification Autism Spectrum Disorder. Rett’s Disorder has been removed from the DSM and labeled a "medical disorder". While there are various opinions on the matter, many are extremely concerned over the vague diagnostic criteria in the proposed manual.
1. Clinically significant, persistent deficits in social communication and
interactions, as manifest by all of the following:
a. Marked deficits in nonverbal and verbal communication used
for social interaction:
b. Lack of social reciprocity;
c. Failure to develop and maintain peer relationships appropriate
to developmental level.
Much of the concern is over criteria one (see above), as many of the deficits cannot be measured in a clinical setting. As most clinicians would be unable to observe children in their natural environments, much of the information used to determine diagnosis would consist of speculation and interpretation by unqualified persons such as teachers and others who work with the child. This makes the diagnosis subjective and dependent on the knowledge of individual observers.
Section 1.a assumes that the average pediatrician has adequate speech and language training in order to determine deficits in a verbal child. While the non verbal children may be easy to identify under criteria a, those without obvious speech deficits may fall through the cracks without proper evaluations by speech and language pathologists.
Other concerns relate to the age in which some of the criteria is appropriate. For instance, section 1.b requires a lack of social reciprocity. Reciprocal social behavior refers to the extent to which a child engages in emotionally appropriate turn-taking social interaction with others. It is normal for very young children to engage in parallel play and thus typical children do not always engage in reciprocal play. Section 1.c indicates that the child must show deficits in peer relationships - something that is not always obvious in early childhood.
The manifestation of these difficulties may not be cut and dry. Often, like-minded children flock together. With the rate of Autism diagnoses rising some Autistic children may have developed peer relationships with others on the spectrum. Additionally, renowned specialist, Tony Attwood has found that girls have naturally higher verbal and social skills than boys which can often lead to missing the diagnosis under the old criteria1. Under the proposed criteria, these children would simply not qualify for diagnosis at all.
Since all three criteria are required to receive a diagnosis, it is easy to speculate that many children will not be diagnosed until well past early intervention years when or if they would show obvious deficits.
2. Restricted, repetitive patterns of behavior, interests, and activities, as
manifested by at least TWO of the following:
a. Stereotyped motor or verbal behaviors, or unusual sensory
behaviors
b. Excessive adherence to routines and ritualized patterns of behavior
c. Restricted, fixated interests
The wording for criteria two (see above) is not only very vague, but insinuates that these behaviors are undesirable. This is directly in conflict with the current mentality of concentrating on strengths as well as weaknesses. The proposed changes return us to negative stereotypes that define autism as a series of defects. Compounded by vague wording, criteria 2 fails to define what defines "stereotype", "unusual", "excessive" and "fixated". This lack of clarification allows those using the DSM-V for diagnosis, to rely on their own interpretation and definitions. As with criteria one, the diagnosis becomes subjective with what the diagnostician perceives as being usual, excessive and essentially typical behavior. Instead of clarifying, this criteria not only confounds the diagnosis, but is also contrary to defining autism as a widely diverse spectrum that has particular deficits as well as unique abilities.
3. Symptoms must be present in early childhood (but may not become
fully manifest until social demands exceed limited capacities)
Criteria three (above) appears to confirm the fear that young spectrum children will go undiagnosed. Data has shown that early intervention is key to helping Autistic children with potential deficits. Additionally, failure to identify children at an early age could cause severe stress to children who need accommodations to function in mainstream society. It has been confirmed that the earlier accommodations and interventions are put in place, the better the outcome for the Autistic person. However, under the new DSM-V criteria, it is likely that children will go undiagnosed until they are school age and beyond. Children who previously may have been diagnosed Asperger's Disorder and PDD-NOS could easily slip through the diagnostic cracks.
Finally, a large concern is by some in the Asperger's adult population who were previously diagnosed under the DSM-IV. While many of these individuals continue to fit the Asperger's Disorder under DSM-IV, there is concern that as adults, they will be "undiagnosed" under the DSM-V since they now do not present with the new criteria requirements. This presents a very real question; how will the currently diagnosed population fair through this change?
Autism vs. Asperger's
For various reasons, some feel that Asperger's should remain separate. Some speak of pride of being "Aspies" (a term created by the adult population), finding a sense of superiority and self-esteem in the distinction. Along with this view, there are those that feel that Asperger's includes a difference in communication skills and ability to adapt than that of Autistic Disorder. The mindset is that these differences mean that those with Asperger's are not the same as others on the Autism spectrum. The hard working advocates who have toiled endlessly to have Asperger's recognized as a valid diagnosis, see this as a step backwards from what they have worked for, and perhaps, are feeling that they have struggled for nothing.
Inclusion Issues
Under the new DSM-V, there is also a concern that people currently diagnosed as Asperger's will be automatically slotted into specialized Autistic community, and special education programs where they will be segregated from their non-disabled peers. This is a tribute to the prevailing mindset that those with the Autistic Disorder diagnosis are somehow "more disabled" than those with Asperger's. Additionally, this mindset is testimony to the current problems inhibiting proper inclusive programs in our public schools and communities. It appears that society is still more inclined to let labels define the supports and accommodations rather than individual needs.
Currently, the only diagnostic difference between Autistic Disorder and Asperger's has been defined by verbal skills and more specifically, a child's ability to speak. Using this model a person diagnosed with Asperger's is no less Autistic than a person diagnosed with Autistic Disorder. However, under the Individuals with Disabilities Educational Act (IDEA) qualifying diagnostic criteria, this distinction has often excluded Asperger's as an Autistic Disorder. For some, this has prevented access to accommodations, support programs and services that they need to remain stable or reach their full level of independence, both in schools and in the community.
Currently, U.S. states have used Autism, Emotional Disturbance and Other Health Impairment as the qualifying diagnoses for those with Asperger's Syndrome, but not actually Asperger's. Additionally, IDEA has a behavioral qualification which states that a child who has "behavior that impedes his/her learning or the learning of others" also qualifies for IDEA protections. IDEA is supposed to be "needs" based and not strictly applicable to diagnostic labels. It speaks more about the state of accommodations and specially designed instruction than the actual definition of Autism.
One solution to the problem of accommodations is the changing IDEA and other educational criteria by removing static qualifying labels (such as Autism, Emotional Disturbance, etc). Because IDEA does not use the DSM, it is unclear how the proposed DSM-V changes will affect a students ability to receive special education services.
Severity Levels
One unknown is what the severity levels of Autism Spectrum Disorder will look like in the DSM-V. Previously it was thought that Asperger's Disorder was the "highest functioning" Autism, Pervasive Developmental Disorder Not Otherwise Specified was next and finally Autism being the "lowest functioning" diagnosis. However, over time, it has become more apparent that the lines between these diagnoses are not so clear. While those with Autism may have lower IQ scores, it is not obvious how accurate these scores are, as those with the current Autistic Disorder almost always have severe verbal communication impairment.
It is thought by some that breaking down the new Autism Spectrum Disorder by severity may be a step in the wrong direction. Until there are standardized tools to accurately measure a persons ability to "function", severity is subject to speculation and interpretation. However, as there are no proposals published currently, it is too early to say what these severity levels will look like or whether they will exist at all.
Looking toward the future
While there is much scrutiny over what the DSM-V should look like, it is questionable as to why the Autism Spectrum diagnosis is remaining in the DSM at all. While there are many theories about the origins, it has been established that Autism is not a temporary mental health issue, but a life long neurological and biological issue.
Autism has been defined as a spectrum disorder which indicates there are many varied presentations. One could speculate that Autism, itself, is not the disorder and that other commonly co-morbid medical diagnoses are responsible for any impairment.
Many Autistics also have speech and language disorders, sensory processing disorders, fine and gross motor disorders, immune system dis-regulation, and learning disorders. These disorders do not appear in the DSM, but appear in the ICD (International Classification of Diseases) manual which is medical, in nature.
Would it be more appropriate perhaps to place Autism Spectrum Disorder in the ICD manual with the commonly co-morbid diagnoses? This would ensure that every person diagnosed with an Autism Spectrum Disorder is given appropriate interventions and support customized to individual needs. Attempting to find a "one size fits all" diagnosis seems unrealistic when not every presentation is the same. Indeed, doing so would likely alleviate concerns for covering all the diagnostic criteria in the DSM-V. While many Autistics prefer not to be considered diseased, changing the diagnostic process to the ICD manual is preferable because of the many co-morbid issues.
As it stands now, will these proposed revisions to the mental health diagnostic criteria cause more Autistics to fall through the cracks, as opposed to being recognized, and given the appropriate supports as soon as possible. Does the vague criteria reinforce the standard, narrow diagnosis of Autism, instead of reaching out to acknowledge the wide spectrum of Autism?
1. The Complete Guide to Asperger's Syndrome, Attwood
Posted in:
on March 3, 2010 at 7:46pm


Comments
DSM III, III-R and IV were multi-axial - 'mental' disorders split over Axis I and II, medical diagnoses coded on Axis III, stressful life circumstances on Axis IV, and something called a Global Assessment of Functioning on Axis V. Apparently, DSM V plans to ditch that idea. Bad move, IMHO (tho the Axis I/II distinction was sucky, and was never keen on the GAF either).
Immune disregulation not DSM mental disorder, but with the old multi-axial system, would be coded on Axis III anyway.
Autism far from the only neurological/developmental disability in the DSM (current DSM IV version, or proposed DSM V) - check out http://www.dsm5.org/ProposedRevisions/Pages/InfancyChildhoodAdolescence....
Speech and language disorders, learning disabilities, developmental coordination disorder/dyspraxia are there - also Tourette's and mental retardation (urgh! on language). Sensory processing disorders aren't.
Which brings me to one of my biggest problems with the proposed DSM V criteria - they really don't seem to get at the perceptual/cognitive/whatever experience (or even suggest what that might be). Just picks a couple of visible-from-the-outside characteristics, describes 'autism' in terms of them (why not include sensory issues as well? and need for routine and fixated interests, often not for the same reason!). etc
The vagueness of this diagnosis is going to make it harder, not easier for physicians to actually diagnose it properly. In my opinion, there DOES need to be a distinction between infantile autism and a form of autism that seems to appear later in life or regressive forms etc, as well as autism that is non verbal as opposed to verbal forms. The reason these things need to be distinguished is so clinicians and researchers can more accurately diagnose and not be misdiagnosing people with autism. Autism is not a mental illness and it seems with the vagueness of this criteria many people with mental illnesses could be diagnosed autistic.
Also, it is largely becoming a policy issue. Diagnose the child with autism so they will get the services they need, rather than accurately diagnosing. Too few children and adults have been tested for other things like Fragile x, before slapping the catch all "autism" label on them. The services are important, but autism is starting to become a meaningless term similar to what borderline personality has become. Children and adults are actually less likely to get what they need from this new standard.
I am not convinced IQ is a reliable benchmark for functionality in humans.
Humans are required to have ability in a number of significant areas, logical reasoning only being one such area.
While my IQ is very high, my score is almost certainly inaccurate, given that I experienced high levels of anxiety while taking the test which meant I panicked and did not perform as well as I could have.
I attend a social group with other adults with Aspergers.
Ahem, by definition, the group negates all our diagnosis.
Yes, we speak to one another!
Curiouser and curiouser :-)
Mark
While you both have made great points, in some ways I have to disagree. The diagnosis can be made of general autism, then detailed down into the finer categories, such as Asperger's, PDD-NOS, etc.
The DSM-V, I believe, is simply categorizing to ensure that insurance & care providers (as well as doctors) can use the system to more accurately describe the patient. After all, this is a medical reference book we're discussing, not a best-selling non-fiction piece.
I do agree that an accurate diagnosis may not always be reached. But I believe that ensuring that all persons are given the tools, services and technology they need to survive and live a life that they choose to is of utmost importance.
It is not entirely the DSM-V's fault that the term 'autism' is becoming 'meaningless'. When something is diagnosed (no matter what it is) and it becomes trendy to discuss in society and popular culture, the word will obviously wear out over a period of time.
Of course, that's just my opinion. I could be wrong.
I'm proud of being autistic, and it's a part of who I am.
Everyone has made great points. Thanks for the input!
Does anyone know when the DSM-V will be released?
According to the website, they plan to release it May 2013. Still lots of time for it to get worked on more.
Firstly IQ is a measurement that is flawed in many ASD people. It is imposible to measure a childs IQ if the child can't consentrate on a task. The more i read up on autism in general the less impressed i am with my IQ (which is high)
Secondly I don't want Aspergers seen as not a ASD dx in that some kids with AS need speacial ed and some dont much the same as other ASD kids. I would suppose fewer do.I likemy Aspie identy an i don't want to lose my Autie identy either. Aspergers seems a much more fragile thing. I am a bit afraid it will vanish and leave me back where i was, confused, frustrated, and confusing and frustrating to other people.
One of the problems i see in th US is that it is hard to afford a good dignosis since it isn't a black and white thing. Much of the autistic spectrum is a matter of degree and, as in mental health, it depends on the dignoser. An overburdened public MD sems more likely to make a mistake than a major medical university.
The problem heare in Australia is there is so much distance to cover unless you live in a major city. So getting your ASD child to travel for hours several times to get a dx plus travel costs and there can be medical fees if you want the absolute best...
My stepsons live with their mother in a smallish town. Theextended family has lived there for generations. They have their own home and it is familar. They have a 7 hour round trip to Brisbane to see the doctor.
Lastly I keep wondering why autism is clustered with mental health at all?? What benefit is there or is it just something that happened a long time ago and so it keeps happening that way?
Are they really going to have a quaint, antiquated Freudian term like "fixated" in the new edition of the DSM? You're kidding me, aren't you? What does "fixated" actually mean? Does anybody know?
If the things in this article are true, I think the whole business of diagnosis is being so dumbed-down that it will be even more meaningless than it is now. There are things called genes and chromosomes, and these things can have a huge influence on the development of individuals. I don't see any evidence of recognition of these new-fangled ideas. I don't see much point in getting concerned about possibilities for early intervention without serious consideration of genetics.
Thanks Corina - it seems as if we're all looking at a very early beta edition, and perhaps realize that there's more 'breathing room' here than we thought.
Just getting around to reading this.
I have to agree that the language of the proposed DSM-V changes is incredibly vague. I also think one of the previous commenters (jettaknight86) made a very good point by saying that all of this is largely motivated by getting US insurance providers to cover treatment and therapies. It's sad, but even though we may *know* that certain behaviours are not necessarily 'a bad thing', painting them in a negative light is the only way to get everything else paid for... because of course, no one wants to throw money at something that is simply a "difference".
As far as Aspergers vs Autism goes, I can see the argument for distinction, but.. being an Aspie parent of 2 HFA children, you'd be very hard-pressed to tell me that we're all so very different, y'know? I see a lot of myself in my kids' behaviours, and vice versa. I've also seen children who were once designated Auties become Aspies later in life, and others regress (namely, myself). And then there's the whole 'who speaks for "autism"?' issue ... parents of more severely-affected children bitterly proclaiming that voices like mine "don't count" because we're Aspies and therefore completely different. *sigh*
I dunno. That's just my 2.2c on the subject (GST inclusive).
Autism to me is a mystery My son will be 20 in a month and still no cause has been found for austim,it seems to be increasing.I pray for a cure.It was hard when my son was little because he had the austim, dev delays,and adhd,every day was a struggle and then no sooner had he outgrown his adhd his hormones kicked in and along with it,the dreaded OCD, which I was told was common with teens with Autism.My son William can tell you anything about history from Civil War to yesterday but can barely count simple change.He can walk 3 miles from my house to get to the mall and make it there safe but can't comprehend the directions on a microwave meal(after catching 2 on fire, microwave is off limits without help).My son is aware of all the deficits he has,he knows he has Autism and in his words feels humiliated ,this makes me so sad because if I could turn back time and make him normal,I'd choose not to because he has so many special qualities that I treasure but he does not see those qualities,he feels alone and left behind by the system who promised to help him,the help has been slow coming since he turned 18.I guess what bothers me the most is the fact that there is no support group for young adults with austim,who need that support and after age 18 often isolate themselves even more than when they were kids.There is a support group for parents of kids with austim, there is a support group for young kids with austim, there is even a support group for grandparents ,not one single group for the ones that need it the very most in my opinion young adults age 18 and over.I pray one day this changes