Grave Concerns About Profound Autism
The label "Profound autism" bungles the support needs of autistic people with complex disabilities, and will endanger autistic lives.
The categories within the DSM-5 are not designed to be lumped together to create arbitrary groups, like “Profound Autism.” As Steven Kapp notes, the DSM-5 autism criteria are not designed to create autism subtypes. There is a clear risk that “Profound Autism” will lead to clinical and research confusion. We are clear in our paper such risks are observed with another proposed autism subtype of “Pathological Demand Avoidance.” Arbitrarily using co-occurring Intellectual Disability and/or Language to attribute someone with “Profound Autism” seems nonsensical. We know that many Autistics attempt suicide, and a recent study suggests such behaviours are not inherently due to them being Autistic. Should we attribute Autistic persons showing an impairment of suicide with “Profound Autism”?
Our concern for broadening the definitions of autism to incorporate co-occurring conditions is that it is no longer an autism definition but a definition of complex disability interactions. By collapsing co-occurring difficulties etc. into one diagnostic label, it is unlikely that support needs will be met. To illustrate this, we ask some hypothetical questions: How much do you know about someone who is solely labelled with “Profound Autism” without needing to make assumptions about what that might mean? How much more do you know about someone who is described as Autistic, non-speaking but who uses Augmentative and Alternative Communication (AAC), has hypermobility and fatigue and is a part-time wheelchair user, and who requires support with emotional regulation? Which of the two is likely to be better supported by those around them based on this information? Who is more likely to receive appropriate medical care for their physical co-occurring conditions?
