Over the course of the last several months, a lot of questions have been raised about how upcoming changes to the DSM-5 definition of the autism spectrum will impact people's lives. Many people are concerned that changes in the diagnostic criteria may make it more difficult for them to access services, supports and accommodations. How are the changes likely to impact Autistic adults applying for services from a state Intellectual and Developmental Disability (I/DD) agency, or for disability payments from the Social Security Administration? What about parents trying to figure out how a change in the diagnostic criteria will impact their interactions with the school system? Or Autistic adults seeking accommodations in the workplace or at a college or university? Today, ASAN is proud to release a new policy brief providing specific and meaningful information to help answer these questions.
Co-written by ASAN President Ari Ne'eman and ASAN chapter leader and UCLA graduate student Steven Kapp, our new policy brief is the first of two reports we will be releasing analyzing the issues surrounding the autism spectrum and the DSM-5. In it, we review the likely effects of DSM-5 on IDEA-mandated special education services, income support programs like SSI and SSDI as well as associated public health insurance, services from state I/DD agencies and access to legal rights under the ADA and Section 504. We found some interesting things, showing how DSM-5's proposed ASD criteria could impact our community in both positive and negative ways. We also include some recommendations to the work group writing the DSM-5, suggesting some ways that the draft criteria can be improved to avoid doing harm while still retaining the positive developments we have seen to date. Take a read, and if you share our thoughts, please make your opinions known to APA.
The public comment process remains open till June 15th, and we urge you to use our policy brief to help take advantage of this opportunity to be heard. Details of how to send your thoughts to APA can be found at this link and our report is available by clicking on its title below:
What Are the Stakes?
An Analysis of the Impact of the DSM-5 Draft Autism Criteria
on Law, Policy and Service Provision
I don't think the DSM5 organization is going to budge on Social Communication Disorder, per the recommendations, but I do think there is the potential that they could budge on the 3 out 3 criteria for Social-Communication, if structured in a different way that allowed them to retain non-verbal communication impairments as a mandatory requirement.
Part of the problem I see is that they are ignoring the long standing verbal developmental delays/ lack of spoken language criteria that has been a non-mandatory criteria in Autism Spectrum Disorder since 1980.
There is a new mandatory requirement in the DSM5 that all individuals with autism spectrum disorder must have significant impairments in developing and maintaining peer appropriate relationships; while this is a common issue, it is currently neither a mandatory criteria for any diagnosis anywhere for an ASD, and not a universal impairment among all individuals diagnosed.
I provided a registered comment to the DSM5 working group for a compromise of sorts, to at least potentially change this requirement back to a non-mandatory criteria.
I have no professional credentials, so it's not likely that they are going to weight my opinion as strongly as others, but I thought I would give it a shot:
Non Verbal communication impairments are a mandatory requirement in the revised DSM5 basic criteria for Autism Spectrum Disorder, but Verbal communication impairments, per developmental delays or the lack of ability to speak, while not included in Autism Spectrum Disorder in the basic DSM5 criteria, are addressed in general terms per levels 2 and 3 of severity, Currently, verbal delays are part of the way that autism is screened among children, as well as in children with the loss of verbal language in regressive autism, so it is very relevant at this point per an autism spectrum diagnosis.
It's highly unlikely that those two elements are going to be taken out of the screening process for Autism Spectrum Disorder, so while it is has never been a mandatory criteria requirement for a diagnosis of an autism spectrum disorder, never the less, it is a core symptom of some subgroups of autism spectrum disorders that aren't going away, if the DSM5 stays with their decision to exclude that existing criteria as part of the basic criteria of autism spectrum disorder.
Since verbal and non-verbal communication impairments are addressed as separate required impairments in severity levels 2 and 3, there is an acknowledgement of the issues as they currently exist among those in subgroups diagnosed with autism spectrum disorder whom lack the ability to speak, but not a specification of them as verbal communication impairments severe enough in those subgroups where a child cannot speak at all.
Motor skills developmental delays and verbal delays/lack of spoken language are part of what has been defined as autism disorders and will continue to be part of what is defined as autism spectrum disorders in both the ICD10 and Gilberg criteria for autism spectrum disorders. These developmental delays are currently very much a part of what defines subgroups of individuals with autism spectrum disorders along with hypo/hyper-reactive sensory input issues that are all, in part, biologically determined per a pervasive developmental disorder, instead of externally observable behavioral impairments, potentially influenced by the interaction with the social/cultural environment at levels required to meet the guidelines of the criteria in the DSM5 criteria for a diagnosis of Autism Spectrum Disorder.
From the DSMIV criteria for Autism Disorder:
"1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime"
This is the major criteria discarded from the criteria for DSMIV Autism Disorder that has been part of the criteria for the disorder since 1980, in the DSMIII. Per the DSM5, revised criteria, it appears that in the future that this defining symptom among some subgroups of individuals diagnosed with Autism Spectrum Disorders will be considered a co-morbid symptom, per the basic criteria, rather than an inherent part of autism currently commonly observed in subgroups of individuals with the disorder, as currently described in the basic criteria of Autism Disorder, in the DSMIV.
The severity levels remedy this issue, in part, however the DSM5 basic criteria for Autism Spectrum Disorder does not match severity levels 2 and 3 per the nomenclature that is used that addresses verbal and communication impairments as separate identified characteristics that are a requirement in severity levels 2 and 3.
Non-verbal communication impairments are identified as impairments of Social Interaction in both Autism Disorder and Aspergers in the DSM IV. Communication impairments are a separate category in Autism Disorder.
A solution to maintain consistency could be to keep the four criteria associated with Social Interaction, currently common to a DSM IV diagnosis of Autism Disorder and Asperger's Syndrome, and require 2 out of 3 of those criteria, excluding the non-verbal communication impairment criteria.
An additional subcategory under the general category of Social-Communication could be created for the criteria of non-verbal communication impairments currently listed under the DSM5 Social-Communication category and add the verbal communication impairment criteria quoted above, per verbal delays and the lack of spoken language. 1 out 2 of these criteria under the general category of Social-Communication, per this 2-element sub-category of Social-Communication, could be required.
It's highly unlikely that an individual with autism without the ability to speak is going to have skills in non-verbal communication that are not clinically impaired, so in virtually every case a non-verbal individual with autism would meet both criteria. And for those with verbal abilities per spoken language, they would still have to meet the criteria of non-verbal communication impairments.
The 2 out 3 requirements for the remaining social interaction criteria, as they currently exist, in the DSMIV, common to both Aspergers and Autism Disorder, added as the second sub-category under the general category of Social-Communication would allow leeway in part for the concerns of the ASAN organization, at least per the concern, for those that have adapted well enough to develop and maintain friendships, in young adulthood.