When the DSM-5 was published in 2013, it combined most of the previous "pervasive developmental disorders" under a single label, autism spectrum disorder (ASD). It indicated that parts A & B of its diagnosis criteria should each get separate severity ratings: 1, 2 or 3. And the diagnosis reports should also indicate with/without intellectual and/or language impairment (see https://a4.org.au/dsm5-asd).
It's tempting to regard the single label, ASD, as homogeneous: to expect that all autistic people are pretty much the same ... even though the word "spectrum" is part of that label.
It's reasonable for people who are less affected by their autism, who reached adulthood or beyond without having much support, to regard statements in the DSMs like "few autistic adults live independently", as demeaning, stigmatising and setting low expectations. If they barely needed support for their autism, they reasonably object to being seen or described as "Requiring very substantial support".
The issue of what terms to use for autistic people who "Requiring very substantial support" is divisive. Some people use severe and/or profound autism. Others prefer terms like "complex and/or high support needs".
This author feels that both terms are needed because they often mean different things ... and those differences matter a lot.
Severe or profound autism means that a person is severely or profoundly affected by the triad of autistic impairments: social, communication, and behavioural impairments. But this may or may not mean they have high or complex support needs. For example, someone with severe social impairment may be able to fill much of their days with activities that do not require communication and/or social engagement. Some autistic people prefer spending their time alone ... being mostly asocial and not communicating (using language). Some of them are quite "productive" that way.
Severely or profoundly autistic people lack social awareness and the skills that they need to mask effectively. So they don't experience the stress and strain associated with autistic masking. And some autistic people choose to "own" their difference, they expect/requires that others just accept their difference/neuro-divergence.
Some profoundly autistic people live happy and productive lives when their preferences are respected and they have the right supports.
Some less autistic people with more social skill and awareness crave social interaction and acceptance and consequently may need complex supports. They are at much greater risk of comorbid mental illness: stress, trauma, anxiety, depression, suicidal ideation, psychosis, etc. Their high and/or complex needs are not directly due to (but arise from) their milder autism.
A less autistic person with comorbid intellectual impairment is likely to learn fewer and less functional life skills ... or be less adaptable. An autistic person with strong sensitivity issues may be more often and/or severely dysregulated thereby needing more frequent and/or intense behavioural support.
Autistic severity is not tied to higher support needs: those are different dimensions in people's disability or impairment.
These difference need to be recognised so that the spectrum of supports needed across autistic populations are appropriately and sufficiently addressed. This will not happen unless the diversity of the autism spectrum is fully recognised and appreciated.
So while we have a national autism strategy that mentions high and/or complex needs but omits profound autism, and Australia's Disability Strategy that ignores autism (most numerous disability type for NDIS participants), while governments magic up Thriving Kids completely outside those strategies and without regard to human rights, there is zero prospect for good outcomes for autistic Australians.
Currently, governments in Australia and their agencies do not recognise and address the diverse needs across the autism spectrum. The abysmal outcomes reported for autistic Australians in education and employment will continue - see https://www.abs.gov.au/articles/autism-australia-2022#autism-and-education-attainment and https://www.abs.gov.au/articles/autism-australia-2022#autism-and-work.
Bob Buckley