Last week after writing about the DSM-V “Temper Dysregulation Disorder with Dysphoria,” I received several emails asking my opinion regarding the proposed merger of autism and Asperger’s disorder into a single ‘spectrum’ category.  This change has clearly generated some significant political debate in the media and the blogosphere, with some in favor of the change (see for example Dr. Roy Ginker’s NYT article), while others have expressed reservations about the potential impact that this change may have in the autism and Asperger’s community. So I wanted to keep my contribution to this discussion somewhat removed from the political/social issues associated with the change, and instead focus on the scientific/clinical basis for this specific move.  Thus, my aim with this post is not to take a position for or against the proposed DSM-V changes. Instead, I simply want to provide some background information about some of the research data and clinical issues that may have contributed to the DSM-V committee’s decision to propose the merger of all ASDs into a single category.

As simple background, according to the DSM-IV, the basic diagnostic distinction between autism and Asperger’s disorder is absence of clinically significant delays in language, cognitive development, and adaptive functioning in the Asperger’s group. The rest of the diagnostic criteria (impairments in social interactions, restricted repetitive and stereotype patterns of behaviors) between autism and Asperger’s is identical. This makes it difficult to differentiate children with Asperger’s from those with High Functioning Autism (HFA; i.e., those who meet the diagnosis of autism but perform in the average to above average rage in intellectual tests). Therefore, two teens with otherwise identical clinical profiles would be diagnosed differently if they differ on their history of language and cognitive delays. The child with a history of language/cognitive delays would be diagnosed with HFA and the child without a history of language/cognitive delays would be diagnosed with Aspeger’s. I mention this because any discussion about the science of the possible differences between these two categories is limited by the fact that both groups have been selected, by definition, to be different. Thus, the question is not whether these two groups are different – they are different because we have defined them differently. The question is whether these two groups actually represent two distinct typologies that go beyond the distinction of language/cognitive delay vs. no delay.

So what would drive the DSM-V to propose the merger between Asperger’s and Autism? In essence, the questions are 1) whether these two conditions represent two different disorders or are simply variations within a larger spectrum, and 2) whether having two categories, as defined today, is clinically useful. If Asperger’s and Autism are simply the same disorder separated by an arbitrary distinction (language/cognitive delays), having two categories would not help us in our understanding or treatment of the conditions, and keeping them as separate categories may be an obstacle for research because it encourages researchers to focus on a domain that may not be relevant or informative. However, if the language/cognitive delay distinction reflects differences between two truly distinct categories, the existence of two categories rather than one should help us make more effective interventions, inform our clinical decisions, or help us better understand the phenomenology of both conditions. Has this been the case?

Let me address the clinical impact of these two conditions from the perception of clinicians (Note: although I am basing these statements on my experience as a clinician interacting at academic/training settings, I admit that this may not represent the experience and practice of all clinicians). I interact weekly with graduate students who are learning how to conduct neuropsychological evaluations for children and adolescents. Often these students have already developed a schema, or prototype, of the child or adolescent with Asperger’s. They would describe such a child as someone who has intense and unusual interests, maybe superior skills in some area such as music or art, rigidity in behaviors and interests, and social and communication ‘deficits’ leading to difficulties interacting and relating to others. The problems begin when we start seeing actual assessment cases. For example, recently a doctoral intern and I sat in supervision to discuss a case of a teenage boy who could be described as having a “perfect” Asperger’s profile, fitting both the student’s schema and the DSM-IV criteria; except for one thing: the client had a documented history of language delays. There was no question about the diagnosis: If the teen had a history of “language delays’ the diagnosis is autism. My student then asked me, so if this is HFA, how does Asperger’s look like? I replied, just like this.

Therefore, in clinical settings, HFA and Aspeger’s disorder look mostly identical, assuming the clinician follows DSM guidelines. But the most important question is whether the current diagnostic difference is clinically useful.  When debating the Autism vs. Asperger’s diagnostic question, I have always asked my students and supervisors whether the diagnostic difference would change anything regarding our approach to the case. This is the most critical question: would our recommendations or conclusions change based on the final diagnosis that we provide (autism vs. Asperger’s)? The answer is usually, if not always, no. Given identical clinical profiles, the recommendation for treatment, school accommodations, parental interventions, and so forth, would be the same for two adolescents who only differ on the presence or absence of language delays in early childhood. The provision of a diagnosis of autism vs. Asperger’s may lead to different political/personal/social consequences, but clinically, the current DSM-IV distinction between these two conditions, and the research that has come out of this distinction, has not informed or improved our clinical practice (e.g., selection of treatment, assessment, prognosis, etc). This is likely one of the main reasons that led the DSM committee to suggest the merger of Asperger’s and Autism.

But why has the DSM-IV distinction failed to improve clinical services or lead to a greater understanding of these conditions? One possibility is that these two conditions are variations of a greater spectrum and that the language/cognitive delay difference is arbitrary (see for example Bennett et al., 2008 for a study showing identical clinical outcomes between HFA and Asperger’s). In such a case, the merger of the two conditions would better reflect the true nature of the conditions as a variations within a single spectrum. However, another possibility is that the DSM-IV criteria is simply wrong. Under that hypothesis, research has failed to find utility for this classification because of an erroneous diagnostic criteria which led to the incorrect classification of people. Some support for this later position was provided by the research team of Fred Volkmar at the Yale University Child Study Center (Klin et al., 2005). They proposed a new diagnostic criteria for Asperger’s disorder that was more inline Asperger’s original 1944 observation of his cases. Under this system HFA and Asperger’s would differ on 3 specific domains:

1. Nature of social impairments: HFA would be characterized by self-isolation and lack of interest while Aspeger’s would be characterized by interest in social relations and ‘seeking others’ (social motivation) but in a socially insensitive or atypical manner.

2. Nature of language impairment: HFA would be characterized by delayed, echolalic and stereotyped language while Asperger’s would be characterized by adequate or precocious language but with difficulties in the use of language (pragmatics).

3. In addition, the Asperger’s diagnosis would include one-sided verbosity and the presence of factual, circumscribed interest that interferes with the person’s functioning (e.g., education and social interactions).

Interestingly, some research has shown differences between HFA and Asperger’s when using the Klin criteria above (see for example Mazefsky and Oswald. 2006). Thus, it is possible that the lack of clinical utility of the current DSM-IV diagnostic distinction between HFA and Asperger’s is due to a lack of validity of the DSM-IV criteria rather than the lack of validity of the constructs of HFA and Asperger’s as two distinct syndromes. So why did the DSM-V committee recommend the merger of these two conditions rather than a redefinition of the Asperger’s criteria? It appears that their interpretation of the totality of the data is that there is no sufficient evidence to validate these two conditions as two separate syndromes regardless of diagnostic criteria used, and that the differences observed are better accounted for by differences in language, IQ, and severity, rather than features of the disorder.


From the DSM-V committee:

Differentiation of autism spectrum disorder from typical development and other “nonspectrum” disorders is done reliably and with validity; while distinctions among disorders have been found to be inconsistent over time, variable across sites and often associated with severity, language level or intelligence rather than features of the disorder.

Update: I just noticed that Dr. Mohammad Ghaziuddin, an accomplished autism and Asperger’s researcher and clinician working at the University of Michigan, just published an opinion piece on the Journal of Autism and Developmental Disorders arguing for a redefinition of Asperger’s rather than its merger with Autism. He argues that the current DSM-IV definition is incorrect and a new updated definition (following the Klin’s criteria outlined above) would be more accurate and clinically useful. He states:

…what is needed is a revision of its criteria taking into account, its quality of social impairment (active but oddrather than aloof and passive); idiosyncratic interests (oftensophisticated and intellectual); communication style (oftenpedantic and verbose); and age of onset/emergence of symptoms (often around 7–8 years). In addition, effortsshould continue to establish its validity not only from autism but also from other conditions.

References:
ResearchBlogging.org

Klin, A., Pauls, D., Schultz, R., & Volkmar, F. (2005). Three Diagnostic Approaches to Asperger Syndrome: Implications for Research Journal of Autism and Developmental Disorders, 35 (2), 221-234 DOI: 10.1007/s10803-004-2001-y

Bennett, T., Szatmari, P., Bryson, S., Volden, J., Zwaigenbaum, L., Vaccarella, L., et al. (2008). Differentiating Autism and Asperger Syndrome on the Basis of Language Delay or Impairment. Journal of Autism and Developmental Disorders, 38(4), 616-625. doi: 10.1007/s10803-007-0428-7

Post to Twitter

Tagged with:
 

20 Responses to Autism and Asperger’s in the DSM-V: Thoughts on clinical utility

  1. In your discussion you compare Asperger’s with HIGH Functioning Autism and exclude any reference to the many persons with Low Functioning Autism.

    Why? Is it valid or useful to simply exclude reference to the many persons with Autistic Disorder (current term) and Intellectual Disability in analyzing the ASD category proposed for the DSM 5??

  2. RAJ says:

    Nestor also fails to mention that the category of PDD/NOS which is now the largest of the three subgroups (Autistic Disorder, PDD/NOS, Asperger) is also being eliminated. The trend to redefining ‘Autism’ as a trait condition obscures the boundaries between a debilitating neurological disorder and normal common trait variances.

    The April 2009 first draft for DSM-V proposed different levels of severity: Severe, Moderate, Mild, Sub-clinical and Normal Variation. The degree of impairment has now been entirely dropped with the latest proposal.

    April 2009 proposed definition
    http://www.psych.org/MainMenu/Research/DSMIV/DSMV/DSMRevisionActivities/DSM-V-Work-Group-Reports/Neurodevelopmental-Disorders-Work-Group-Report.aspx

    Februry 2010 proposed definition:
    http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#

    Normal variation is now included by inference in the Autism Spectrum Disorder category. A shy kid with a keen interest in mathematics would now meet diagnostic criteria for an ASD and is eligible to placed in special education.

    Plomin Happe and Arnold using questionnaires completed by parent or teacher found that 5% of the general poplation possess what they describe as ‘extreme autistic-like traits’ and 10% of the general population possess at least one ‘autistic-like trait’. Traits that would now meet criteria the new diagnostic schemes proposed.

    The current autism epidemic will pale in comparison to the explosion of autism rates that will occur after DSM-V is published.

    • @Harold, I did not discuss low functioning autism because my post was regarding the lack of clinical utility in differentiating those with Asperger’s from those with HFA using the DSM-IV criteria. There is no doubt that differentiating across severity is clinically useful. The recommendations and case conceptualization for a child with low functioning autism would be significantly different than those for a child with HFA/Asperger’s. I do however, understand and agree with your concern. The merger of autism and Asperger’s will not help combat, and most likely contribute to, the public and media perception that autism = high functioning autism. Unfortunately, this is a problem that affects the autism community uniquely and is arguably independent of the clinical/scientific issues involved in determining whether autism and Asperger’s are two different typologies if we assume that ALL conditions vary in intensity from severe to mild (low to HFA, low to severe depression, mild to severe bipolar, etc). Yet, your concern is relevant to the question of whether low and high functioning autism are simply variations in intensity of the same condition or two different conditions. Although it is a very important and relevant issue, it was not the topic of my post.

      @RAJ my understanding of the degree of impairment was not dropped for DSM-V, it’s being redefined and not ready for public comments. I completely agree with you that the new DSM-V should not obscure the boundaries between trait variations and a debilitating neurological disorder. I am 150% in agreement with that. However, a shy kid with a keen interest in mathematics would NOT meet diagnostic criteria for autism. Such a kid would not meet criteria 1 or criteria 2.

  3. henrysdad says:

    The fact that persons with aspergers want to be called “autistic” because it’s more “popular” and known is NOT a reason to want to be included in the dsm 5 autism spectrum. Look, Aspergers is a unique condition with its own special traits, it is not autism. i suggest looking at You Tube video called “autism spectrum seems out of control” and “autism epidemic out of control” to see a mother’s perspective, the mom has a severely autistic son…by the way.

  4. henrysdad says:

    There is also a great video on you tube called “severe autism when there is no answer” The video is made by a man with Aspergers (a fellow aspie) who also has an autistic son. Very enlightening. Youll be surprised.

  5. Hi! I really appreciate your acknowledgement of the differences between AS and classical Autism. Your article was referenced in my group, “Keep Asperger’s Syndrome in the DSM -V.” We would appreciate any research or input you could provide in the cause to have AS remain separate in the DSM -V!
    Thanks!

  6. David says:

    I have aspergers (diagnosed) and my brother has classic autism. I can read and write, I’ve got a degree, I can dress myself in the morning. My brother however has no communication, bowel problems , he is a man in his 20s who is trapped with the mind of a two year old. He needs help with every aspect of his life. It doesn’t do me any good or him any good by you trying to merge what we’ve got into one condition.

  7. Tripti says:

    My son is five and a half and has a mild autism as per the diagnosis of psychologists. He had a speech delay (started speaking at the age of three and a half)……..He speaks well but we could see the gap of two years now also as the speech is not perfect as per his age…..He likes the company of children but sometimes stay away from them……his behaviour confuses me as sometimes he is absolutely understanding sometimes his doesn’t adjust at all..Above all he has a writing imperfection as he doesn’t writes on his own….As per the psychologists it is autism (mild) but his IQ is more than his age and his social adjustment level is below his age…then what is the category of such children if you merge autism and Asperger’s disorder

  8. TJ says:

    re the definintion having no consequences as in the individual will always be considered on the base of their individuality rather than the label. This is not the case in other countries. How then would a child moving out of the US with a diagnosis of one or the other then fare when what is then available to them could be determined on the basis of a label rather than their need?

  9. Chris Kornele says:

    As a grad student in psychology I see danger in merging autism with asperger’s. What drives treatment is diagnosis. I think future information will reveal that autism and asperger’s are two differnt disorders. Perhaps science has not helped these people yet, but we shouldn’t give up.
    I am also parent of a thirty year old who didn’t have the benefit of a diagnosis in younger years. In someways I am glad as she is bright and was not written off as unable to benefit from a mainstream education. In other ways I would like to have help in getting more help for social awkwardness and coping with day to day stress in her school years.

  10. A says:

    As a teacher and someone misdiagnosed with Aspergers as an adult when it was attachment/trauma related issues from my childhood – that led to poor social skills, severely low self esteem, isolation and a scatter of symptoms that resembled that of Aspergers – my concern is with the over-diagnosis of Aspergers. Children who have few boundaries and parents that can not cope or are unwilling to self-reflect on potentially unhealthy parenting practises, are being misdiagnosed so often. What does this do for the child? The real issues do not get addressed as the parents so often hang their hat on the label to take responsibility away from themselves. These children are not getting the help and support they really need and the children who genuinely have Aspergers or HFA, are ultimately the ones who suffer as support (especially in schools) is spread thin, and understanding of the diagnosis & best ways to treat/support becomes wishy-washy as children present with an increasingly inaccurate array of symptoms/behaviours.
    Not to mention the danger of a person living up to a label. Children in particular if they are told they are a certain way and their behaviours are because they have Aspergers, or are unworthy or are ” naughty” or whatever the reason they may be given, will eventually believe this and live according to this label (official or colloquial). We must be so very careful with the diagnosis – whether or not it becomes amalgamated in the DSM-5. So many children I have taught that have been diagnosed with Aspergers do not have it. They are intelligent, lonely, isolated/neglected children who are crying out for attention and have simply not been taught appropriate ways to ask for it – or (& this is ever increasing) their parents refuse to take responsibility and insist there is something wrong with their child as opposed to their own parenting practises.
    Our desire as a society to label everyone that is different and pathologise them worries me. Shouldn’t we spend more time looking broad sprectrum and focussing on ways to help all individuals deal with life in the most productive and healthy way possible? If we adopted this approach, (which means “treatment” would look different for everyone – just as a good teacher will teach each child according to individual needs and learning styles – regardless of any formal diagnosis or lack thereof) the label would matter less and the focus would be on providing strategies to improve an individual’s quality of life, not to get a label (which is increasingly motivated by government funding, not the individual’s well being).

  11. Lee says:

    I’m a 49 year old man recently diagnosed with Asperger’s syndrome. Although academically very bright I’ve never had a job or a relationship. I’m concerned about the prospect of soon being classed as autistic because I believe I have absolutely nothing in common with someone who is autistic; I actually have more in common with a neuro-typical person.

    The reason I say this is because all I want is to be allowed by other people to participate in society – I’m perfectly capable…unlike someone with autism…and that is the difference; given the opportunity I’m very capable…it’s just that I’ve never been given the opportunity. Someone with autism most likely wishes to live in their own little world or is incapable of progressing, whereas I am; given the support and opportunities, able to live independently and even contribute to society.

    I’m also concerned about the funding implications; I fear that as a person with ‘mild autism’ I will be no-one’s priority, with the majority of funding going to individuals with severe autism.

  12. Tania says:

    My experience has been that children who have been misdiagnosed with aspergers have not been assessed properly. The dsm criteria needs to include other criteria more specific to social skills as well as criteria pertaining to sensory processing disorder. Aspergers really is an umbrella where many other co-morbidities exist. Under the umbrella many AS kids also have ADHD, OCD, tourettes/tics, anger management problems, anxiety, depression, social skills issues, semantic pragmatic issues, and sensory processing issues.

  13. Tania says:

    I almost forgot the two other importance areas I assess when diagnosing Aspergers is Theory of Mind and facial expression recognition!

  14. Bubbles says:

    My experience as an adult with Aspergers leaves me on the fence with this issue. I do believe in the autism spectrum and that we are part of it. It can be difficult to get help for us when you have lower functioning autistic people who need much more help. What I do find that is similar in Autistics and Aspies is the barrier to communication either with society or with one’s self. For example, I don’t know when I’ve had a seizure or when I am sick unless it stops me from carrying out my routine. Only then do I know something is wrong. Sensorily, I don’t nkow nor understand things unless I can touch it or engage with it. If I didn’t know or couldn’t help myself, I’d be ‘making one with the floor I walk on just to understand it’. I believe at the core, we are a part of the spectrum and by merging the two, the understandings of autism can only increase and expand. I think there are a few of us that have an investment in the care of all autistics because we know first hand that our ability to function will fluctuate over the course of our lives and depend on the circumstances. I don’t understand why they can’t place the criteria for aspergers under the criteria for autism. In my family, I can trace it to my grandfather and there are few of us who, would be considered either autitic, PDD-NOS and Aspergers. To us, we are autistic. We do know that services for ‘lower functioning’ is more available than for the rest of us.

  15. Get rid of AS! says:

    There is no “autism epidemic.” It is simply an expansion of the diagnostic criteria, mainly due to the unearthing circa 1994 of Hans Asperger’s work from 40-50 years ago.

    No lesser authority than Ami Klin said at an Asperger’s Association of New England conference that the difference between HFA, AS, PDD-NOS and NLD is the spelling.

    People with AS diagnoses who call themselves autistic are further ostracizing themselves and diverting attention from the truly debilitated autistic people. Some rightly feel insulted that they are placed in the same spectrum as a completely non-verbal autistic person.

    There is no need to have four names for one condition.

  16. Isus says:

    I was upgraded…or revised, if you will, from “possibly autistic” to Asperger’s Syndrome when the DSM-IV was published and I obviously met all of the criteria. I had not known about any of this until I was in my late teens and was rather surprised to find that my behaviors and mannerisms where such that I was presumed to be autistic from the age of two. I had only known autism up until that point by it’s classical representation, and I clearly did not present in such a manner.

    While I note that people may see external similarities between high functioning autism and Asperger’s Syndrome, I maintain they likely have some large neurological distinctions as I believe clinically significant language delays represent markers of significant neurological anomalies and dysfunction.

    One thing which caught my attention, which I have noted in the past, pertains to the proposed age of onset for Asperger’s Syndrome. While I believe Asperger’s Syndrome is something present from birth, I do believe sensory issues peak between those ages.

  17. Ettina says:

    “They proposed a new diagnostic criteria for Asperger’s disorder that was more inline Asperger’s original 1944 observation of his cases.”

    “Nature of social impairments: HFA would be characterized by self-isolation and lack of interest while Aspeger’s would be characterized by interest in social relations and ‘seeking others’ (social motivation) but in a socially insensitive or atypical manner.”

    That’s not consistent with the original 1944 paper. Those kids clearly were self-isolating and aloof, not ‘active-but-odd’, in social interaction. Asperger considered aloofness to be central to the condition he described, just as Kanner did. The only differences were that Kanner included a broader range of functioning levels, and Asperger placed more emphasis on the overlap with giftedness. Both are clearly describing the same condition, which looks a lot more like modern stereotypes of autism than Asperger Syndrome.

  18. I don’t think you can have a discussion about the usefulness of merging high functioning autism with Asperger’s without also talking about low functioning autism. You are missing too many pieces otherwise. It is true that in many cases HFA and AS may look similar, but there are far more cases where a diagnosis of classic autism and Asperger’s differ by miles. I fear that we are only doing ourselves a disservice by classifying them as one and the same.

    I especially worry that those who are on the higher end of the spectrum may find it harder to get services when lumped in with lower functioning clients, especially if there is only a certain amount of funding allocated for the one diagnosis. I just don’t think the word autism is specific enough to describe the enormous variations that exist on the spectrum. For instance, take this website on resources for people with Asperger’s I was looking at the other night (http://www.aspergerssociety.org/articles/support.htm ). The word Asperger’s is useful in defining who these groups are for, what functioning level these groups will best serve. Nobody likes to be pigeonholed, but we need specifics in diagnosis in order to best serve clients.

  19. Kevin Nasky says:

    There’s also considerable overlap between the DSM-IV(TR) criteria of Schizoid Personality Disorder and Asperger’s Disorder.

Leave a Reply

Your email address will not be published. Required fields are marked *

*


two + = 10

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

Looking for something?

Use the form below to search the site:


Still not finding what you're looking for? Drop a comment on a post or contact us so we can take care of it!

Set your Twitter account name in your settings to use the TwitterBar Section.