Watch our October 13, 2021 webinar here or below:
Chat transcript from webinar here
Dear friends,
NCSA has released a position statement calling for categorical recognition of severe autism in the Diagnostic and Statistical Manual (DSM-5) of the American Psychiatric Association (APA). Unlike our other position statements, which are pretty straightforward, this one might require additional explanation – especially if your initial reaction is, What is the DSM? And why should I care?
The DSM, otherwise known as the “bible of American psychiatry,” lays out the current diagnostic categories and their criteria. These can and often do change from edition to edition. If you know someone who was diagnosed with Asperger’s syndrome, for example, that means he or she was diagnosed during the reign of DSM-IV, from 1994-2013. DSM-IV “split” out different autism phenotypes, proposing diagnoses of Asperger’s as well as pervasive developmental disorder, not otherwise specified (PDD-NOS), childhood disintegrative disorder, and autistic disorder. That move was undone with DSM-5, which “lumped” these categories into one, autism spectrum disorder (ASD). Differentiation was supposed to occur through the attachment of severity levels ranging from 1-3, but these are infrequently used and fail to reflect dramatically different clinical realities. Instead, a quirky genius as exemplified by the protagonist of The Good Doctor and a profoundly affected, nonverbal adult who requires 24-hour supervision so he doesn’t elope or put his head through a window are both simply considered “ASD.”
Please don’t dismiss this as an arcane catfight confined to academia. Virtually all of the problems that recur in NCSA blog posts and webinars – from the lack of appropriate services for our population, to the overrepresentation of very mildly affected autistics in the media and public discourse more broadly, to the underrepresentation of the severely autistic in research – all stem from, or are worsened by, the lack of a unique diagnosis for severe autism and the devastating symptoms that often accompany it. As stakeholders representing those incapable of speaking for themselves, we have the duty to speak out.
The APA switched from Roman to Arabic numerals in DSM-5 because the organization anticipated issuing frequent revisions, i.e., DSM-5.1, 5.2, etc. It’s been eight years without a revision. Please join us for an interactive webinar on Wednesday, October 13 at 8pm EST / 5pm PST to discuss why and how NCSA, along with many researchers, clinicians, advocacy organizations and families, are now calling for revision of the ASD diagnosis.
—NCSA Board of Directors
FAQs
What does NCSA propose calling the new diagnostic category?
We are not prescriptive, though we suggest possibilities like Autistic Disorder, Severe Autism, Profound Autism, and Classic Autism.
What labels does NCSA propose for milder conditions?
We take no position on labels for disorders that are unlike severe autism, but note that all forms of ASD by definition cause significant impairment and require supports.
How does the position statement define the severe population?
Having following suite of pathologies, among others that may be present: severe social-communication impairments, cognitive deficits, significant challenges in attaining basic living skills (with frequent need for 24-hour supervision and care), sensory dysregulation, and maladaptive behaviors (including repetitive or “looping” behaviors).
Explain NCSA’s idea to use “ASD” as a provisional diagnosis.
DSM-5 moved toward the unitary ASD label due to inconsistencies in how clinicians diagnosed patients, particularly young ones. They were also concerned about ensuring access to appropriate early interventions, and about mitigating parental trauma. Due to these factors, and the uncertain trajectories for those diagnosed very young, it is appropriate to retain a broad diagnostic for young children. However, by late childhood (although this can differ in some cases) these concerns are no longer valid, and one can measure functional realities and levels without uncertainty.
Will NCSA’s proposal hurt autism advocacy?
Absolutely not. Look at NAMI for example — represents broad range of mental illnesses such as PTSD, eating disorders, schizophrenia, borderline personality disorder, etc — while each distinct disorder also benefits from retaining specific representation, advocacy, literature, clinical specialists, and research.
Aren’t the DSM-5 three levels of ASD severity enough?
They are a step in the right direction, but they are not enough. Severe autism is qualitatively different, it’s not merely a matter of degree along a linear scale. Additionally, these levels are seldom used in practice. Instead, we should consider levels of severity within each new category.
Is NCSA implying that those with higher functioning forms of autism don’t deserve support?
Of course not. All people with ASD suffer significant impairment, by definition. Their needs are very considerable, and deserving of the highest degree of recognition and response. Our concern lies only in the qualitative distinctions between severe autism and other forms.
But isn’t there a shared biological basis for ASD?
There are likely some overlaps in developmental pathways perturbed in cases of autism. But such phenomena are also seen with ASD, ID, ADHD, OCD, learning disabilities, and anxiety — and we don’t lump all those in one category, because the phenotypes are so clearly different. From a genetics point of view, there is no genetic cause that explains more than a tiny fraction of cases. The DSM is based on pragmatic clinical reality and needs, not on theoretical biological possibilities.
What do you think will happen with ASD over time?
ASD will likely become a vague term like “mental illness” (but we still distinguish between major depressive disorder and anorexia) or “developmental disability” (but we still distinguish between CP and Down syndrome). It will be used, but not clinically valid past childhood.