Late diagnosis - which term do you prefer?

[vergil96]

An old debate here. Almost ten years old, to be exact. Something that must take into consideration the following:

1) Were you formally diagnosed, and if so when? (Before or after May, 2013)
2) Were you diagnosed within the protocols of the DSM-IV, DSM-V or the ICD-10, or ICD-11 ?
3) Were you diagnosed in the United States, UK, Europe or Australia? Or somewhere else ?

All three of the above considerations play into who diagnosed you and under what medical protocols.

4) Are you presently self-diagnosed ?

If like so many of you who have "gone under the radar" it's unlikely (but possible) that you would meet the definitions of ASD level two or three. And that if you are diagnosed in the United States it's logical that you would be done so in accordance with DSM-V protocols. If elsewhere it could be the DSM-V or the ICD-11. Keeping in mind that the ICD-11 protocol isn't entirely the same as the DSM-V, but closer than it was under the ICD-10.

I'm diagnosed by a licensed psychotherapist, it happened this year and I'm from the EU. We're focusing on what matters for me and how to improve my functioning and haven't used any diagnostic criteria and don't plan to. What matters is correctly identifying and communicating my needs and the kind of issues that I'm facing.

 

[Judge]

I'm diagnosed by a licensed psychotherapist, it happened this year and I'm from the EU. We're focusing on what matters for me and how to improve my functioning and haven't used any diagnostic criteria and don't plan to. What matters is correctly identifying and communicating my needs and the kind of issues that I'm facing.

"And lastly that wherever you reside, you are still at the mercy of whatever protocols a medical professional chooses or not to apply to your case. Done capriciously or not. A process that could involve rigid adherence to any one particular protocol or a "freelancing" of any protocols. In essence over the years here, I've heard a number of less-than-fundamental ways medical professionals have gone about with such diagnoses. Making it all the more complicated than it already is."

Exactly what I referred to as "freelancing". Reflecting the reality that all medical professionals are anything but on the same page when it comes to the diagnostic process. Which for lack of a better way to describe it remains "a hot mess".

Under such circumstances, would it be any surprise if the medical community (globally or not) comes up with yet another highly revised standard of what constitutes autism? Sometimes I wonder if the best answer to it all for them to come up with is the response, "We just don't know at the present time".

 

[Progster]

Asperger's, because that's what I was diagnosed with. On the spectrum or autistic are ok, too.

 

[AO1501]

I usually don't refer to myself in any context except purely as who I am as a person. Labels don't really mean much to me since they're often meaningless at best, or misleading at worst. I certainly don't care in the slightest what other people, expert or not, have in mind if I have to define a label for myself - nobody but me knows anything about what being me is like.

But, I'm ok with 'autistic' because it's a fact. It's also a fact that because autism is a very wide spectrum, there are a million places anyone who is 'autistic' can be on that spectrum, and it's not my problem if other people don't get that and properly understand it. Nobody's ignorance determines how I see myself or my decisions.

I was diagnosed when there was still 'Aspergers' in the DSM (this is the US, obviously, prior to DSM 5) and so I am an Aspie. But like, and along with, all other Aspies, it doesn't define me, I define it.

 

[Neonatal RRT]

I don't feel like any term fits me. Forgive my ignorance if I say somethibg wrong, but I'm relatively new to the topic.
- the word "autism" makes me think of someone who is disabled, for example on a wheelchair, needs assistance with self-care - definitely not me, this is the cobtext in which I've heard the word "autism" my whole life
- "Asperger's" - people who I know and are diagnosed with it had struggles at school and are easy to spot due to posture, clumsiness, eye contact, not understanding metaphors etc.
- "on the spectrum" - this phrase sounds very infamiliar and I'm not sure how it's perceived

Which terms do you use and why to describe yourself if you're diagnosed late due to a lack of obvious signs and obvious academic difficulties?

ASD, ASD-1, Aspie, Asperger's, autistic, on the spectrum,...doesn't matter to me. I use all of them. I am not a "label person".

Most people don't have an understanding of what it is to be autistic, so telling them you are, is often met with a blank look. You often don't have to explain what autism is to people, but rather what it means when you and the other person is communicating and socializing. You don't have to engage with that whole "disabled" conversation, but rather focus upon your strengths. Don't inadvertently put yourself into a "sub" position, where the other person could possibly make your life a bit Hellish.

 

[Crossbreed]

...or ICD-11...

For autism, ICD-11 has

• Autism without Intellectual Disability &
• Autism with Intellectual Disability.

It loosely compares to DSM-5's ASD1 vs. ASD2/3.
(Intellectual disability is not limited to IQ. One can have an average to higher IQ, but still have executive dysfunction, for example.)
https://www.spectrumnews.org/news/new-global-diagnostic-manual-mirrors-u-s-autism-criteria/

 

[Ken]

I don't feel like any term fits me. Forgive my ignorance if I say somethibg wrong, but I'm relatively new to the topic.
- the word "autism" makes me think of someone who is disabled, for example on a wheelchair, needs assistance with self-care - definitely not me, this is the cobtext in which I've heard the word "autism" my whole life
- "Asperger's" - people who I know and are diagnosed with it had struggles at school and are easy to spot due to posture, clumsiness, eye contact, not understanding metaphors etc.
- "on the spectrum" - this phrase sounds very infamiliar and I'm not sure how it's perceived

Which terms do you use and why to describe yourself if you're diagnosed late due to a lack of obvious signs and obvious academic difficulties?

I consider myself autistic. I feel that is simply a matter of fact.

Indeed, the term "autistic" does imply disability, but that implication is by people who are ignorant about both autism and "disability". (In my experience, most psychiatrist don't even get it.) But, it's not my fault that people are ignorant.

There are many autistic elements to me that are crippling, but I don't consider that to be a disability. I can still get around and I can still have a productive, fulfilling life. In reality; all people have some sort of disability. Everyone is different. Everyone has strengths; everyone has weaknesses. Not everyone can run like an athlete, but that doesn't make them disabled. Just don't call Blake Leeper disabled.

While there are elements of my autism that is crippling, there are also elements of it that has made me very successful in life. Even more successful that I ever dreamed I could be.

Rebekah Taussig does not consider herself disabled, or at least as much as popular opinion does. She gets around and takes care of herself. She may be paralyzed, but she is not disabled. I just love her story.

Yea, autism is crippling, but never think that makes you disabled.