It all begins with a diagnosis and if the diagnosis is wrong… or worse yet, doesn’t exist, what then? This past year the new edition of the The Diagnostic Statistical Manual (DSM-V) of the American Psychiatric Association (APA) was released. It was a long-awaited version of its Diagnostic and Statistical Manual of Mental Disorders. This is the ‘bible’ of psychiatry, developmental disorder and mental illness. If it’s not in here, it’s not out there. In other words, if it is not listed in the manual, there is no way for a physician to find a code to accompany the diagnosis he/she determines, and if there is no diagnostic code, there is not way an insurance company will pay for the treatment, or even the evaluation for that matter.
But this goes deeper than that, without going into an extensive, boring history on the use of the DSM, a parent does need to know what was there at one time and what will be listed in the future. Know the history of your child’s diagnosis and how it has changed over the generations.
Here’s five of the main areas it will affect our lives:
1. The new edition combines four independent diagnoses — autistic disorder, Asperger syndrome, pervasive developmental disorder-not otherwise specified (PDD-NOS) and childhood disintegrative disorder — into a single label of autism spectrum disorder. The rationale for this change is that these disorders have the same essential symptoms, but at varying degrees of severity. According to the APA, they are best thought of as a single disorder on a wide spectrum.
2. It might help girls with autism. According to William Mandy, a lecturer in clinical psychology at University College London, with this newest version, “The DSM-IV said almost nothing about the female autism phenotype. The DSM-5 has acknowledged it as a possibility without defining it. If current work on autism gender differences bears fruit, the next iteration of the DSM should provide an empirically based description of the female phenotype.” (Source: Mandy W. et al. J. Autism Dev. Disord. 42, 1304-1313 (2012) PubMed).
3. Better History Screening and improved psych/social histories taken into account. To a parent this may mean the “experts” may listen to us when we talk about our uncles or about our cousins who were always a bit different. The descriptions of most symptoms are largely retained between the DSM-IV and DSM-5, but one significant change in the DSM-5 is that autism symptoms can be manifested either currently or by history, for either social communication or restricted and repetitive behaviors. That means that clinicians will need to focus more deeply on an individual’s earlier history.
4. Services: Hopeful we will have better school and community services for those with Aspergers. Think about this. If the diagnosis of Asperger’s is no longer a separate diagnosis, but absorbed within the Autism Category in general, then perhaps those who were previously diagnosed with Asperger’s should still be deserving of the services they were receiving. We must be careful not to allow those with Aspergers to start being called autistic again, because they are not the same diagnoses. This all might be wishful thinking to some, but to me that’s a law suit waiting to happen. With the right advocacy services should and will continue.
5. We might actually be ending the use of the “R” word, as the DSM-V chooses the wording “intellectual disability” instead. Hoorah for progress, but at what price? We need to wait, use the manual for a bit and make the revisions necessary to continue moving forward in the world of autism.