The growing worldwide recognition of Asperger’s Syndrome (AS), Pervasive Developmental Disorder Not-Otherwise-Specified(PDD-NOS) and Non-verbal Learning Disability (NLD) as distinct conditions which persist throughout the lifespan has resulted in an explosion of social media, services and programming aimed at  teens/young adults seeking successful transitions into the community, work, and higher education.  With  this increased recognition,  people with these disabilities should be able to expect to more easily affirm their diagnostic identity among clinicians, and practitioners right?

Identity Crisis: Who am I after DSM-V is implemented?

The American Psychiatric Association’s (APA) publication of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) in May, 2013  will render the conditions of Asperger’s Syndrome, Pervasive Developmental Disorder Not Otherwise Specified, and Non-verbal Learning Disability as historical footnotes-similar to quaint terms like minimal brain dysfunction and hyperkinesis-since these conditions are not to be included in the newest version. DSM-V is considered and used as the most reliable resource of commonly accepted diagnostic criteria for psychiatric diagnoses among clinicians, insurance companies, educational institutions, and public-funded programs. All interested parties will have an opportunity to weigh in on the proposed changes. The American Psychiatric Association posted the working group’s final proposal on all diagnostic criteria  (including ASD) on the diagnostic manual’s Web site in January and until June 15, 2011, invite comments from the public.

AS, ADHD, NLD, LD and PDD-NOS are all examples of high prevalence, neurologically-based developmental disorders which affect the way the brain processes information. As “hidden disabilities”, these conditions are based on a cluster of observable symptoms due to brain abnormalities, not emotional trauma. It is well-known that many people with these disorders generally have average to superior intelligence and above average verbal ability, yet have significant difficulty with job performance and social interactions. Because American culture values social competence above knowledge or intelligence, such deficits often cause individuals significant, life-long challenges in relationships, work, and other socially demanding pursuits.

In recent years, these diagnoses  have become increasingly common. Much of the growing prevalence of autism spectrum disorders, according to many sources, is statistically significant for Asperger’s and other mild forms of the disorder. If the APA guidelines as written become part of the final DSM-V, AS and PDD-NOS  will be folded into a single broad diagnosis, Autism Spectrum Disorder (ASD) — a category that the APA will attempt to encompass autism’s entire range, or spectrum, from high-functioning to profoundly disabling.

NLD, initially thought to be a valid, disabling condition that would be included in the final DSM-V, will not gain recognition as a separate and distinct coded disorder. While there is no pending entry for NLD in DSM-V, people with this disorder, clinicians, practitioners and researchers are still debating what exactly constitutes the disorder. These debates and a continuing lack of large sample, empirical studies have made coming up with a definition difficult and arbitrary.  According to a wonderfully written article by Yvonna Fast, the condition is still uncommon and misunderstood, because it’s not a disorder that causes people to be nonverbal. Rather, Fast says people with NLD have a diminished ability for learning information that is presented non-verbally. NLD has been defined as a specific neuro-psychological profile, and presents as a syndrome with certain strengths and weaknesses tied to the underlying cause, alleged to be white matter damage in the right side of the brain. (Rourke, 1995 ; Thompson, 1997)

With respect to validating the conditions of AS,NLD, and PDD-NOS, the push to refine current psychiatric nosology that can produce diagnostic criteria and disorder categories which keeps pace with advances in neuroscience while at the same time enhance clinical utility seems to be at the basis of this particular identification issue. Greater recognition is devoted to what are known as dimensional aspects of psychiatric disorders. APA work group committees are seeking to improve understanding of the boundaries between disorders and underscore the heterogeneous nature of psychopathology.

A recently released book called The Conceptual Evolution of DSM-5  provides a framework for the evolution of the forthcoming diagnostic system in the DSM-V which, the APA believes, will help advance clinical practice and facilitate ongoing development of diagnostic criteria as well as refine research approaches that will guide clinical trials, genetics, imaging, and treatment guidelines.

The authors provide the following insights:

  • Detailed descriptions of age-, gender-, and culture-specific aspects relevant to psychiatric diagnosis and the need for sensitivity to these factors when making diagnoses
  • Discussions on the dimensional aspects of mental disorders, including overlapping symptoms relevant to many or most diagnoses
  • Consideration of alternative classifications of disorders that recognize disorders sharing validating features
  • Presentation of neuroscientific and epidemiological evidence to expand understanding of disorders beyond that of the categorical organization presented in DSM-IV
  • A review of clinical implications, including how clinicians may shift their conceptualization of previously viewed diagnostic criteria and their consequences.

Can you diagnose me now?

So, to the casual eye, this reorder of diagnostic categories is a progressive approach that considers disabilities from a lifespan continuum with co-occuring issues or symptoms, such as food allergies or other health-related problems, which need to be concurrently considered and treated. The reader is directed to look specifically at the neurodevelopmental and neurocognitive categories in the new DSM-V for further information.

Combine these changes with health care reform, eligibility for government-funded programming, and shortfalls in disability-related programming/services and it is easy to see that if you want to be a person with a recognized disability, you better be on the DSM-V “good list”, or you may not exist or be helped by insurance companies, public-funded programming, educational settings, or employers.

It may make it easier, in some cases, to get an updated diagnosis if you have  a mental health condition (e.g. ASD, ADHD, depression), which do not require much more than a clinical interview with an MSW, LPC, or Master’s level psychologist. For those with cognitive disorders, you are still stuck getting an expensive, test-based diagnostic done by a MD, Ph.D, or neuropsychologist, and then no certainties. The best rule of thumb will be to use the KISS principle, especially for employers, where a disability is a disability is a… you get the idea.

According to a NY Times article on the topic of proper diagnoses, the main reason that AS and PDD-NOS will not get a separate category is a lack of empirical evidence to distinguish them as such. The conclusion reached by the APA Autism work group is that it is better to have no subcategories and wait for reliable research to yield reliable, specific Autism biomarkers than to persist in recognition of conditions that do not exist. The APA’s  position creates some difficulties in accepting this pronouncement when some of the new DSM-V conditions being considered include internet addiction, seasonal affective disorder, and Male-to-Eunuch Gender Identity Disorder! Check out the article for some quotes from the article that many people familiar with the conditions might find at fault!

About those genetic markers…

Voices from the Aspie and NLD communities have their own take on these developments. Rather than take up space writing in detail, check out these forums that bring up excellent points about eligibility, how people identify with current labels, and that without inclusion of these labels, it will be difficult to expect that the research database that can result in evidence-based practices, insurance coverage, and other civil rights protections will result in improved quality of life outcomes for adults with these disorders.

An article released on June 1, 2011,  by the Journal of the American Medical Associationcautions the scientific community against an over-reliance on using rsearch studies that attempt to demonstrate casual links between specific diseases and biological markers or genes. Scientists reviewed articles published in 24 of the most highly cited biomedical journals- and only articles with over 400 citations. They then searched for subsequent meta-analyses which had the same biomarker and the same outcome, published between 1991 and 2006. The biomarkers that were highly cited in those studies included blood biomarkers, infectious agent biomarkers, blood proteins, and genetic risk factors.  The links are habitually exaggerated,unrealistically overstated, and generally do not hold up in larger studies. This is the cautionary tale part of waiting for reliable biomarker research to catch up for adults who live with Asperger’s, NLD, and PDD-NOS as this particular article shows over 85% of these highly cited studies are not reliable due to having false-positive and exaggerated results. The  article goes on to state that discoveries made in these studies often significantly overestimate the findings seen from meta-analyses, especially in being able to appreciate the discriminating ability of these emerging risk factors. 

This makes an  empirical basis for making long term predictions about outcome is lacking for individuals with autism spectrum disorders especially adults with the condition. Dr. Harry H. Wright,  noted in a APA Autism conference that there are no guidelines for making a diagnosis of ASD in adults and that examples are needed for the various autism criteria. Dr. Wright also notes that this may be a particular issue for African-American families who are typically referred at a later age than their Caucasian counterparts.

At all times, it is critical for those who believe that people with these conditions should expect full inclusion into any aspect of society, that their condition has a name and diagnostic characteristics which enable them to obtain services, advocacy, and recognition amongst their peers in the world. When new language is introduced that changes the playing field to such a dramatic extent that the DSM-V will (quite a lot of the revisions are very good), we must take a stand to protect ourselves and those we care about who will be impacted by the unintended consequences that will take years to work through or change.

Many states (e.g. AZ, TX, CA) that do not recognize or serve adults with Asperger’s, but will for ASD. There will still be a need to develop the support networks of services/providers to help transition people to less restrictive life/work settings. It will be more incumbent than ever for adults currently identified with AS,NLD, and PDD-NOS to develop self-accommodation strategies and an even greater need to create/expand appropriate programs/services to help them develop functional competentcies relative to the setting and person.

Please contact the APA and make your comments before June 15, 2011!