Late diagnosis - which term do you prefer?

[vergil96]

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?

 

[autism-and-autotune]

I understand your questions; I used to feel the same way even prior to my own true diagnosis. I had a lot of misconceptions of what autism was, and even what it meant to be disabled. I fully accept now that I have autism and I am also disabled even if it doesn't fit someone else's description of what those two words 'mean.'

Granted, it is a spectrum, and just because I have autism but it's not as severe as the autism of another person doesn't make me less autistic. I understand we all may have our own connotations and denotations and definitions; some agreed, and some aren't.

My autism is disabling, frustrating, and debilitating in most areas of my life. Has it helped me creatively? Oh yes. But is it a hassle to deal with--and not just for me, but for others in my life? Yes. Feel free, however, to define yourself how you wish. Others will have to be respectful and adhere to how you wish to be referred to.

 

[Princess Viola]

Autistic.

I call myself autistic because I have autism and am autistic.

Simple as that.

 

[Atrapa Almas]

Its an interesting question. Let me explain with an example:

Hey Guys, I have been recently diagnosis as having been born Mexican. I dont think I have Mexican problems, Im not corrupted non poor. I dont even talk spanish. Forgive my ignorance in country related matters, how should I call myself:

A) Mexican. I have a mexican diagnose, but I dont feel like those mexicans I see in the movies. I dont eat tacos or spent my day dreaming behind my big hat in the desert...

B) European, I love Europe and agree with their values. The blue flag with the stars is cool, but I neither speak all those weird languages.

A) American, I live in Canada so I should call myself American. Oh wait, maybe people who call themselves American are from USA? Well who cares. American sounds cool, dont you think?

So how should I call myself?

If I met someone like that, specially someone very intelligent, I would sugest them to learn a bit about countries and then decide by themselves...

So yes, your concepts about Autism, Aspergers and Spectrum are wrong. They may be even insulting for some people. Not my case, I also was ignorant on the topic some years ago.

I think on myself like "having autistic traits", "on the spectrum" and "autistic" depending on the day you asked me. But most of the times im just myself and the autism stuff is just as important as my nationality.

 

[Crossbreed]

Though there are plenty of exceptions, autism in its simplest form [ASD1 p.k.a. Aspergers] is the clinical basis for being a nerd. But it also affects our immune system, making us coal-mine canaries to environmental changes that NTs are oblivious to.
https://autlanders.blogspot.com/2019/07/autism-subtypes.html

 

[tazz]

Fairly new diagnosis. But so far, I have found it quite natural to use the phrases "I have autism" and "I am autistic" interchangeably.

I don't like saying I'm disabled or I have a disorder, because these terms (as commonly used today) usually imply that there's a minimum standard of capability and anyone falling short of that standard has something wrong with them. If necessary I use the word "condition" instead; which still isn't perfect.

I don't want to derail the OP's question, but perhaps this is related: I see two different uses of the word "spectrum":

1) A scale with 0% autism at one end and 100% autism at the other.

2) The range of different ways that autism might affect someone.

My understanding is that option 2 is correct. I've seen it stated clearly on the UK national health service website (I think): you can't be a little bit autistic. You're either autistic or you're not. If you are autistic then there's a range of different ways it might affect you, and the severity with which those things affect you also varies.

This seems quite important to me because option 1 makes it easier for people to make a judgement - which already I've experienced several times: "Really? You're autistic? Well you must be right on the edge of the spectrum because I've never noticed. It doesn't seem to affect you hardly at all."

If I explain that spectrum doesn't refer to a linear scale, they start to get it fairly easily. There's still an uphill struggle to convince them that I'm severely affected, just not in ways that are obvious to see. But at least it moves the conversation on to "oh I see, so which ways does it affect you most?"

I guess this is relevant to the OP's question in that referring to myself as "on the spectrum" doesn't really work because I just get dismissed as "only a little bit autistic".

 

[Crossbreed]

Severe co-morbid conditions are not the autism. They are on-top-of one's autism.
They are just "package deals" that are way more common than they should be (or used to be).

If an ASD2 or 3 was cured of their co-morbids, they would still be an ASD1. (Temple Grandin is an exceptional example of that.)

Instead of "disability," I prefer the term "handicap." My autism is a hindrance, but I can often work around it.

 

[tazz]

Severe co-morbid conditions

Not sure if that was a reply to my post. But I wasn't talking about co-morbid conditions. I was talking about autism's symptom domains, so broadly speaking: social interaction, social communication and restricted/repetitive interests.

 

[Crossbreed]

Not sure if that was a reply to my post. But I wasn't talking about co-morbid conditions. I was talking about autism's symptom domains, so broadly speaking: social interaction, social communication and restricted/repetitive interests.

Under DSM-5, autism [ASD] is assigned severity levels 1-3 by their diagnostician.
In the USA,

• ASD3 adults usually require a guardian (of person);
• ASD2 adults do not require a guardian, but are required to have a representative payee, in order to receive benefits;
• ASD1 requires neither.

ASD2 = ASD1 + a severe co-morbid.
ASD3 = ASD1 + an even more severe co-morbid or collection of them.

ASD1, alone, is just a neurological anomaly, like being gifted of left-handed is.

 

[Princess Viola]

I don't want to derail the OP's question, but perhaps this is related: I see two different uses of the word "spectrum":

1) A scale with 0% autism at one end and 100% autism at the other.

2) The range of different ways that autism might affect someone.

I've never seen someone use the first definition of 'spectrum' when it comes to talking about the autism spectrum.

Then again, everyone I've seen who uses 'spectrum' in regards to autism are autistic themselves and the first definition sounds like something neurotypicals who don't understand autism might use, so that's probably it.

 

[tazz]

I've never seen someone use the first definition of 'spectrum' when it comes to talking about the autism spectrum.

Interesting. Umm... certainly my experience in this regard is when talking to people who do not have autism. So yes I think maybe that's a common misunderstanding among those who, understandably, don't know much about it.

 

[Ronald Zeeman]

Never diagnosed so no opinion.

 

[vergil96]

First of all, I would like to explain that I come from a family of doctors and some family members are teachers too and the term "childhood autism" (I'm also not a native speaker of English and I couldn't find a better translation) got tossed around in my family. It was a reference to:
- the people in hospitals and requiring significant care
- the children who attended integrative schools
So this is where I'm coming from, maybe you have different experiences. Coming from a medical family can warp your sense of different things, and can make it difficult to communicate your struggles, because whenever you say something not 100% accurate from a medical standpoint, you get criticized harshly. On the other hand, I have noticed that if you just say what you're experiencing to people who aren't doctors, they are going to not see that you're struggling. For example, if I say "I have IBS" or "I have food allergies" my family is going to bombard me with explanations why I have a pile of different conditions and how some of them are "just a feeling and not backed in science", but most people are going to nod with understanding and understand that my struggles with food are at the scale of an illness and the consequences I'm going to suffer from if I eat the wrong thing aren't worth it. If I tell other people what my family thinks is right, then my family is going to think I'm "smart", but nobody is going to understand or listen to the litany of problems that I have that are not really a severe illnesses but they poison my life.

Its an interesting question. Let me explain with an example:

Hey Guys, I have been recently diagnosis as having been born Mexican. I dont think I have Mexican problems, Im not corrupted non poor. I dont even talk spanish. Forgive my ignorance in country related matters, how should I call myself:

A) Mexican. I have a mexican diagnose, but I dont feel like those mexicans I see in the movies. I dont eat tacos or spent my day dreaming behind my big hat in the desert...

B) European, I love Europe and agree with their values. The blue flag with the stars is cool, but I neither speak all those weird languages.

A) American, I live in Canada so I should call myself American. Oh wait, maybe people who call themselves American are from USA? Well who cares. American sounds cool, dont you think?

So how should I call myself?

If I met someone like that, specially someone very intelligent, I would sugest them to learn a bit about countries and then decide by themselves...

So yes, your concepts about Autism, Aspergers and Spectrum are wrong. They may be even insulting for some people. Not my case, I also was ignorant on the topic some years ago.

I think on myself like "having autistic traits", "on the spectrum" and "autistic" depending on the day you asked me. But most of the times im just myself and the autism stuff is just as important as my nationality.

Spot on

I just explained where my understanding might be coming from when it comes to disabilities, though.

Although from the whole conversation I deduce that all the terms that I mentioned in the opening post are fine for someone who doesn't really stand out as having some kind of condition and doesn't require a lot of help, such as even more time during exams at school, and there are a lot of misconceptions floating around.

 

[Crossbreed]

...such as even more time during exams at school,...

An ASD1 student might get the extra time, but s/he will not be in the special education class. Some will even be one or two grades ahead in some subjects.

 

[vergil96]

Though there are plenty of exceptions, autism in its simplest form [ASD1 p.k.a. Aspergers] is the clinical basis for being a nerd. But it also affects our immune system, making us coal-mine canaries to environmental changes that NTs are oblivious to.
https://autlanders.blogspot.com/2019/07/autism-subtypes.html

I see, so there are different classifications.

Under DSM-5, autism [ASD] is assigned severity levels 1-3 by their diagnostician.
In the USA,

• ASD3 adults usually require a guardian (of person);
• ASD2 adults do not require a guardian, but are required to have a representative payee, in order to receive benefits;
• ASD1 requires neither.

ASD2 = ASD1 + a severe co-morbid.
ASD3 = ASD1 + an even more severe co-morbid or collection of them.

ASD1, alone, is just a neurological anomaly, like being gifted of left-handed is.

Yeah, I see my position as being different, not having a disability or illness. I get misunderstood a lot. People find it hard to believe what is easy and what is difficult for me. When I'm tired, I become clumsy, for example, and forgetful, absent-minded - people get angry at me that I'm doing it on purpose and that I'm not trying, that I'm ignoring them. It's not true. There is even more disbelief, because I communicate in a logical manner when tired, I'm just slow, clumsy, can't find objects etc. It's just because they have different brains and it surpasses their imagination that someone's mind can work like mine. When I tell some people what's going on - they don't want to hear it and further think it's an excuse or something or that I'm pointlessly quarreling. Idk, I would finish the conversation if they understood what I'm trying to get across and just stopped saying "you're mean and disrespectful, because you're clumsy" and let me just go home and get some rest. And people attack me when I'm tired and need to be left alone in peace. Because I get clumsy, expressionless and have a very hard time talking in a appealing manner. Okay... this is just my frustration with it. Never mind. That's the problem, I can do perfectly fine when left alone and can communicate clearly when I'm not tired or overwhelmed. It's not a problem by itself, the problem is lack of understanding by others, because they can't relate.

I don't like saying I'm disabled or I have a disorder, because these terms (as commonly used today) usually imply that there's a minimum standard of capability and anyone falling short of that standard has something wrong with them. If necessary I use the word "condition" instead; which still isn't perfect.

Yeah, same.

I don't want to derail the OP's question, but perhaps this is related: I see two different uses of the word "spectrum":

1) A scale with 0% autism at one end and 100% autism at the other.

2) The range of different ways that autism might affect someone.

My understanding is that option 2 is correct. I've seen it stated clearly on the UK national health service website (I think): you can't be a little bit autistic. You're either autistic or you're not. If you are autistic then there's a range of different ways it might affect you, and the severity with which those things affect you also varies.

Well, yes. Everyone gets their own set of traits from a large bag. This is how I visualize the concept of a spectrum.

This seems quite important to me because option 1 makes it easier for people to make a judgement - which already I've experienced several times: "Really? You're autistic? Well you must be right on the edge of the spectrum because I've never noticed. It doesn't seem to affect you hardly at all."

It's been a week or so but I managed to get that a lot. And I was like... okay, but these symptoms are ASD. I don't know how I should be explaining things to people without reciting a whole book. People seem to assume that I don't get metaphors and people, which isn't true, but I think mine leans more on the hypersensitive side and I'm clearly driven coconuts and bananas by... stimuli and they lead me to mental exhaustion. Which looks like a loss of verbal and social skills and emotional coping mechanisms. So in some ways it doesn't affect me, but in other ways it can be pretty severe. And nobody understands that, because they've never experienced that. But I might have just answered my own question how to explain it without writing a book.

 

[tazz]

ASD2 = ASD1 + a severe co-morbid.
ASD3 = ASD1 + an even more severe co-morbid or collection of them.

I have to say that's not how I read DSM.

https://www.cdc.gov/ncbddd/autism/hcp-dsm.html
It lists potential symptoms of ASD. And instructs the assessor to indicate how severe they are (levels 1 to 3). The levels are defined by how much support is required, not whether or not a co-morbidity is present:

Level 3 – requires very substantial support, Level 2 – Requires substantial support, and Level 1 – requires support..

I'm not an expert ( in case it wasn't obvious )

 

[Crossbreed]

I see, so there are different classifications.

More of how much extra neurological damage one carries along with their basic autism. And there is no clear delineation between a 1, 2 or 3.

My 35yo ASD2 son has a mental age of 6-10yo.
My 28yo ASD3 daughter has a mental age of 1.5yo.
Their cognitive deficits are not directly from the autism. They are co-morbid conditions. And we have no family history of such. Though we do have likely ASD1s in the family.

 

[Crossbreed]

I have to say that's not how I read DSM.

https://www.cdc.gov/ncbddd/autism/hcp-dsm.html
It lists potential symptoms of ASD. And instructs the assessor to indicate how severe they are (levels 1 to 3). The levels are defined by how much support is required, not whether or not a co-morbidity is present:



I'm not an expert ( in case it wasn't obvious )

I am including some information from the leadership of the US Autism Association who I have worked with previously.

 

[Judge]

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?

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.

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.

 

[Bolletje]

Back when I was diagnosed (in my late 20’s) I was diagnosed with Aspergers. I don’t fit any of the stereotypes you mention though, OP.
I usually refer to myself as having autism, but I don’t find “being autistic” offensive or anything. It’s just that having autism works better, linguistically, in my native language.