The ontology of Autism

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Somewhere in the now deleted parts of the "Critical of self diagnosis? You shouldn't be" thread someone raised the argument that no one is autistic until they are diagnosed by a professional at which point they will suddenly always have been autistic.

The idea seems to be that the DSM or ICD guidelines have some kind of vast power over reality and that we live in a state like Schrodinger's cat: until the measurement is made by licensed professionals, we are nether NT nor Autistic, but as soon as the assessment is complete, the probability wave collapses and one state is determined...

This idea seems to flow from a very strong need to argue that self diagnosis has no validity of any kind in any context and professional diagnosis is the only way of perceiving autism.

What I have learned about autism is that it is a developmental disorder, meaning that the differences between NT and autistic emerge as a result of different patterns of development in the cells of the autistic person during the growth from zygote to child.

The preponderance of existing evidences suggests that the structural and functional differences in the autistic person are influenced by many genetic variations, epigenetic factors such as methylation and prenatal environmental factors like maternal illness and stress.

The actions of a diagnostician at some future date when the person's cells are already constructed has nothing to do with the ontological status of the person as autistic.

Medical diagnosis is a social product that can help people to understand parts of their experience, but it does not change reality.

A person is either autistic or not and this is true regardless of their diagnostic status.

An autistic person who is never assessed but learns about the symptoms and recognizes them in herself or himself and comes to think of themselves as autistic and at some point identifies themselves to others as autistic will have "self diagnosed" and still be autistic. A non-autistic person who is misdiagnosed as autistic by a professional will still be non-autistic, despite the erroneous evaluation.

I don't think a meaningful or productive discussion of the issues around self diagnosis is possible without recognizing the ontological status of autism as a premise.

I don't think anyone would dispute autism is a developmental disorder which is present from the start of life. In fact that's one of its defining characteristics. You can have every autistic symptom in the book going, but if they only started at, say, 15 and not 5, then you're not going to get a diagnosis of autism from a professional. Symptoms have to have started in early childhood.

Likewise, there will be a certain proportion of autistic people who get a delayed diagnosis or no diagnosis at all. I wouldn't dispute this either.

What does any of this has to do with the validity of self-diagnosis though? Just because you think you are autistic doesn't necessarily mean you are autistic. What's the best way of finding out if you really do have autism? A professional evaluation, imo.

The poster who said those things was correct.
Before you are diagnosed with autism, you may be suspected of having autism, or often not, if your parents or others didn't suspect you of having autism.
After you are diagnosed with autism, you have the autism that you always had, and you and others can say that you have autism.

I don't have a diagnosis, but I am about 90% sure that I am Autistic. The whole thing though, if I was to go get evaluated and not be diagnosed, it wouldn't change the fact that functionally I am Autistic. However, using the term "self-diagnosed," is kind of iffy. I can't think of any other circumstance under which somebody would say that - for instance, recently I had some symptoms that were characteristic of Ovarian Cancer and I was a little scared. I didn't self-diagnose myself, I went to the doc and fortunately I didn't have it. Diagnosis means you have seen a doc and been diagnosed.

I really could care less if anybody uses the term, it doesn't harm me, but for themselves I think they would be taken more seriously if they didn't say they have done something that is not possible to do. When I tell people, which is rare, I just say I'm pretty sure I'm Autistic.

But besides that, sometimes it seems like the diagnosed think they are in a country club and we're trying to invade it. But arguing like in that thread is pointless, people should just not care what they think, their opinions are irrelevant to those of us who struggle with the symptoms anyway.

Hmmmmm.....

Really I think this is a matter of semantics, not ontology. Does being autistic mean one is diagnosed with autism, or that one could potentially be diagnosed with autism? The semantics of autism is also in question, is it a diagnosis, as the previous question assumes, a neurology, a set of behaviors, or something else?

I believe this as well. The idea of it is really based on what people will generally define it as.

No. This is not correct.

If you always had autism, then you were always autistic, regardless of the diagnosis. This is a property of reality, not something to be determined by a professional diagnosis.

If a professional misdiagnoses you as non-autistic, you are still autistic. If another professional then diagnoses you as autistic, your status doesn't change, the misdiagnosis is corrected.

Non of this is in any way impacted by whether or not you conclude that you are autistic without a professional diagnosis. And, freedom of speech and all that, you are at liberty to say whatever you want about it. ]

You may feel that a person should not claim to be autistic if they have not been professionally diagnosed, and have made a compelling case for this position, but to argue that a person is not autistic until so diagnosed is to put epistemology over ontology. It is a basic premise of the entire rationalist scientific enterprise that epistemology does not trump ontology, but that an ontological reality can be better understood by refinements in an epistemological process.

To elevate the epistemology of professional diagnosis to this degree is irrational, particularly when it is quite obvious that current diagnostic methods and definitions are inadequate and will continue to change rapidly. I will be very surprised if the DSM 5 description of ASD survives as long as a decade, given the very rapid growth of knowledge in this area.

Despite the changes in diagnostic procedure already expressed in the shift from DSM III to III TR to IV and now DSM 5, the thing called autism is what it is, was what it was and will be what it will be. New labels and diagnostic procedure will come and go. Hopefully some new tests with measurable, quantifiable indicators will emerge. Whatever the changes in the testing methods and criteria and the understanding of the spectrum, the underlying constellation of differences in social and emotional communication and interaction, and restricted and repetitive interests and behaviors will continue to exist.

In saying this, I am not arguing in favor of people self diagnosing and not getting professionally diagnosed. I am arguing that it is conceptually terribly wrong to make the claim that professional diagnosis creates reality, as the language I objected to appeared to do.

If you are not diagnosed with autism, then you may be suspected of having autism, which means that you may or may not have autism, which means that you don't have autism, but instead, that you may or may not have autism.

I think if you don't start with the premise that the word "autism" reflects an ontological truth, there is no point to the discussion. If you do accept that there is an objective reality underlying the concept of autism, then it is irrational to claim that your semantic or epistemological concerns can change or determine that reality.

Now that absurd claim may or may not be what was really meant in the other thread, but it seemed to me to be exactly what was said and I felt I had to argue against it.

I am perfectly OK with abolishing the word autism and calling the spectrum something else or several other things, but if you say there is no thing there, or that the thing changes because we change our description of it, then I can't accept that.

I find it hard to believe that anyone would do that, and the poster probably meant something else, and I probably misunderstood the point and I probably now look like a fool--but I read it three times and the post clearly said that you don't have autism until a professional says you do, at which point you have always had autism. This line of thinking feels so wrong it's like itching powder in my mind and I can't not say "NO!" when I see it.

But the nature of subjectivity means you cannot be certain you have it until such time as a medical diagnosis is complete.


If a schizophrenic is certain he is purple, is he therefore purple if someone tells him he isn't?



The status becomes diagnostically accurate



What are you specifically referring to when you use the terms ontology and epistemology? Are you using ontology in the sense RD Laing uses it at the beginning of The Divided Self, or are you ascribing another use to it?

As with epistemology.


Autism is only understood as it is as a consequence of the material you mention, and the research supporting it.


But it does create a reality ('a' reality and not 'reality'), as it alters your own perception of self, and the perception others who are aware of your professional diagnosis have of you. In much the same sense that a self-diagnosis will alter other's perceptions of you - but possibly not in the manner you think or hope.

It also alters the reality of your daily life in the sense that you may now have access to services you didn't before have access to etc

It doesn't create the reality of your autism - it only acts to confirm it.

But had they never gotten the diagnoses they would have never had autism, even if in actuality they do and it simply wasn't properly diagnosed? To me that seems to defy reality..if one gets diagnosed with autism they had it just as much before the diagnoses.

If they had never gotten the diagnosis, then they would not have autism, but instead, they can suspect that they have autism, or that they may or may not have autism, e.g. if they suspect that they were misdiagnosed.

They can believe they have it, but they can never confirm they have it/are it until such time as diagnostic confirmation is given.

If you are not diagnosed with autism, then you are not diagnosed with autism. There are both autistic and non autistic people in this category.

If you are diagnosed with autism, then you are diagnosed with autism. There are both autistic and non autistic people in this category.

Among those who are not diagnosed but believe that they are autistic, some will identify themselves as autistic and some of these will be correct and some will be incorrect.

I agree with you that the self identification is not a formal diagnosis and is less likely to be accurate.

But the underlying neurology of a person doesn't change because there is or is not a formal diagnosis. Nor can a formal diagnosis be said to be infallible.

You cannot be certain even after a medical diagnosis is complete.
You can be more confident. You may not find it productive to doubt the diagnosis, but the possibility of misdiagnosis means that you cannot be certain.



I am using ontology in the conventional sense: the theory of the nature being, the nature of reality.
I am using epistemology in the conventional sense: the theory of knowledge and the method of distinguishing justified belief from opinion.


Absolutely!