Written in November 2022
The autism spectrum, the experience of being autistic and how it is viewed and “handled” in the medical community, as well as by the parents of autistic people with higher support needs is an uneasy relationship that is constantly in flux, and in which no party is ever satisfied. One of the current issues the communities face is the use of language, some of which pathologises autism and how it presents. This is causing significant disruption for people working on or with autism from any angle, and significant upset within the autistic and autism communities.
Diagnosis: terminology and distinctions
The diagnosis of Asperger's Syndrome as separate to Autism (using the DSM4 or the ICD10) was given on the basis of there being (or not being) a delay in developing language and the presence (or absence) of intellectual disability. The DSM5 removed Asperger's Syndrome as a clinical diagnosis and instead uses the broader “Autism Spectrum Disorder” or ASD, with three levels (indicative of the support needs of the individual). The ICD11 uses a similar idea, but is simpler; the diagnosis is ASD with or without intellectual disability.
The idea is that the diagnosis is more inclusive and that fewer divisions and distinctions are drawn. This has been influenced by a lot of pioneering research and advocacy from autistic people themselves, leading to a much better understanding of autism within the medical community and beyond. However, it is important for some distinctions to be drawn in order for autistic people to have their support needs met and be provided for, and in order for people to understand that, we have to use language to convey this information.
Whichever diagnostic system or tool is used, the medical language is often very similar and uses terms that are often viewed by autism advocates (that is, autistic people who are active in raising awareness of autism and in fighting for the rights of autistic people) as pathologising, as negative. This is unsurprising, as medical language is necessarily clinical and exact. When medical language is used in the lay community, the clinical, detached semiotics of the words are replaced by stigma and negativity.
As an example, take any letter (or if you have access to them, medical records) you have received about a visit to hospital, or a consultant appointment. There will almost certainly be a sentence similar to this:
“Patient complained of a constant pain the abdomen”
In this context, the word “complain” doesn't mean what it means in normal conversation. The patient in this case might not have expressed themselves in a plaintive manner, and may consider that the only “compliant” they had that day was about the price of parking at the hospital. The clinician uses the word “complain” to state the concern or problem the patient was experiencing but is not passing any judgement on how the patient acted, their manner or what they actually said.
The same goes for other words used in clinical settings without stigma, but which, when used in conversation and within the lay community, take on meanings which were not attached in the original use. An inexhaustive list:
I don't like hearing these words used about me, it doesn't feel nice and it often feels judgemental and negative, but I have to remember that the clinical language doesn't have the same meanings as these words do when they're used about us in other settings.
In many cases, autistic people want to use the word “condition” instead of “disorder”, the word “difference” instead of “deficit/lack/impairment” and it is not hard to see why. We don't want to be pathologised and viewed as “less than” because of our neurology – rightly so.
Autism used to be viewed by society in a certain light, as an always severe disability, and that autistic people weren't capable of living independently. We now know that's a load of rubbish and that there are a lot of autistic people who absolutely don't fit that old stereotype, but within the community, we are in danger of going too far in the opposite direction.
The current issue
The problem we're seeing at the moment is the insistence that these words aren't used, even that the word “disability” isn't used when talking about autistic people because autism ought, in the minds of many autistic people, to be seen as a difference, as a naturally occurring difference in neurotype.
I have heard from a neurodivergent professional who is active in training medical staff about autism and active generally in the sphere of awareness raising, who said that discussions which ought to be about autism are being derailed by discussions about specific points of language, and that some presenters and trainers feel pressured to change their course material due to the level of negative sentiment from the vocal autistic community about the use of words like “disability”.
When I look at this issue I see that while many autistic advocates want autism to be seen as a difference and accepted, the parents of people who are more profoundly affected (dare I say disabled) by autism feel that their experiences (including the experiences of their children) are being overlooked and sidelined by very vocal advocates.
It is important to remember that while we in the community are knowledgeable about autism and how it's not a linear spectrum, the majority of society is still ignorant about this. Insisting that autism is never a disability, and that it is only societal expectations that make it disabling puts us at risk of losing support and understanding for autistic people who have higher support needs that many of us with low support needs have not experienced. I'm talking about support needs that have nothing to do with society and its expectations, so support needs that address personal care, nutrition, mobility and communication (again, an inexhaustive list).
This view can also be harmful to autistic people who may have lower support needs, but who still struggle. The narrative that autism isn't a disability, but a superpower, does not acknowledge the very real daily struggle that every autistic person experiences from time to time. Feeling like our challenges are being undermined by our own community hurts. Feeling that we aren't meeting the expectations set by our own community – by the very people who are meant to understand – is painful and isolating.
As I mentioned, the relationships between the autistic community, parents of those with high support needs, and the professional or medical community is an uneasy one which exists in a state of flux. I think there will be a lot of discussion about the terminology we use, and certainly a lot of very strong feelings. However I do think that this discussion is worth having and is in the long standing tradition of sentiment pushing change within the autistic community and into the medical and public arenas. I am already seeing calls for balance, and for acknowledgement that some autistic people are disabled by their condition, even when there are autistic people who do not identify as being disabled.
It is important for those of us who are autistic, but who have low support needs and are able to function independently (although often with a lot of effort and facing frequent challenges), to remember that we also represent autistic people who lead very different lives to us. We owe it to all autistic people to keep the dialogue open, and to be respectful of the needs and wishes of everyone in our community.