ASD1? 2? And 3?

[vergil96]

Might be useful to start self-identifying as hard-of-hearing as that is a designation which is immediately understood.

Yeah, that's what I say usually. But I'm not sure if I can honestly identify with that, because there is a whole deaf community... of people who are simply much more disabled than me.

It was an interesting experience, though, to find youtube content made by deaf people. I thought I was the only person to have some experiences and lines of reasoning.

I got to know that I'm not the only one who forces communication through gestures on strangers. I mean, I could speak, technically. But it makes people think that you hear them in quality that allows you to understand them. It's not the case for me in a supermarket, a shopping mall etc.

It was also surprising to get to know that hearing aid is unhelpful for a lot of people and it's not an uncommon experience. Or that it helps a bit, but not quite. It's an "aid", not a cure.

Then there was this young woman who was just left to deal with 100% deafness by herself. She can speak and read lips, but obviously, she has it much harder than a hearing person, can understand roughly half of what is being said. She went through a lot of speech therapy, but she still found it very hard to follow conversations of hearing people and she wasn't ever taught sign language. It was somehow reassuring that someone else went through something similar, but devastating to hear that she was so neglected. I can't imagine being 100% deaf and just being put in mainstream education without any accomodations. For me the takeaway is that being ignored by doctors and being told that my problem isn't really a problem and perhaps I should just try harder and/or attend unhelpful speech therapy - is actually a common experience and that it doesn't mean there is no problem with my hearing.

 

[jsilver256]

Yeah, that's what I say usually. But I'm not sure if I can honestly identify with that, because there is a whole deaf community... of people who are simply much more disabled than me.

"hard of hearing" is a much more broad spectrum than "deaf" and carries a connotation of requiring support. I don't think there's a single deaf person who would begrudge you on being HoH.

Also, not playing disability olympics or anything - but deafness-wise, I am worse off than that woman you shared. My speech therapy never really stuck with me and I can't read lips all that well.

And maybe it's just because I'm so used to not being able to hear or speak that I don't find it any bother anymore, but I'd say ASD has a much more severe impact on my own day-to-day life. It's not like not being able to hear actively bothers me. All my coworkers know I can't communicate verbally. On the other hand, there's not a whole lot of escape from stims, sensory overload, and meltdowns.

 

[vergil96]

"hard of hearing" is a much more broad spectrum than "deaf" and carries a connotation of requiring support. I don't think there's a single deaf person who would begrudge you on being HoH.

Thanks, it's good to know.

Also, not playing disability olympics or anything - but deafness-wise, I am worse off than that woman you shared. My speech therapy never really stuck with me and I can't read lips all that well.

I was surprised that the person I've seen on youtube was able to understand so much only through lip reading. It has to be very hard to rely only on lip reading. I lip read a lot, but it's often hard to tell by that alone what someone is saying. With poor quality sound, it can amount to sufficient amount of information to tell, but lip reading alone - it's hard. It has to be extremely hard as well to learn to speak for a deaf person. I'm in awe that anyone can learn these things at all. It seems nearly impossible.

I had difficulties following in class, I can only imagine how much harder it is to follow if you have to rely on lip reading only. I think this person was very tough to endure that. I don't think I could do that if I was her, personally.

And maybe it's just because I'm so used to not being able to hear or speak that I don't find it any bother anymore,

The younger someone is, the more they want to fit in, in my opinion.

On the other hand, there's not a whole lot of escape from stims, sensory overload, and meltdowns.

I'm sorry you're so overwhelmed and have to put up with sensory overload and meltdowns so often.

 

[jsilver256]

I'm sorry you're so overwhelmed and have to put up with sensory overload and meltdowns so often.

You too. The point of that post was to help you realize to not to underestimate your own struggles, either. Your burdens are significant.

 

[Neri]

AQ isn't correlated to level as far as I know. In fact there might be an inverse correlation because a level 3 would typically have an intellectual disability in even completing the test.

There is no "level" test online. Levels are based on support needs. Support needs and levels can change over a lifetime. It does not define your "autism-ness." Support needs probably have a higher correlation to IQ than to "autism-ness," IMHO.

I'd be curious why you are specifically interested in getting an ASD2 diagnosis. Do you believe it'll validate your struggles? Or do you need financial aid?

I don't think support needs, necessarily, have a higher correlation to IQ, although they can. I recieved a level 2 diagnosis and I have a much higher than average IQ.
Have you heard of "twice exceptional"? "2e"? It's where a person is "gifted" and disabled at the same time.
Sometimes it's the sheer sensitivity of a person and/or how much trauma and disadvantage they may have experienced. My IQ can be a disadvantage, particularly, as I live in a society that doesn't, necessarily, appreciate "giftedness" and higher than average intelligence. So I tend to overload under the societal pressure of having been able to process a ton more data than most of the people I meet and finding myself highly unappreciated for sharing, a lot of the time. My silver lining is a relationship with the one person who matches me, in intelligence and disability. But both of us seem to be easily targeted for shabby treatment.
He works and would recieve a ASD1 if ever diagnosed (we both have ADHD and complex PTSD as well) and I'm receiving support to overcome agoraphobia.

 

[Outdated]

Have you heard of "twice exceptional"? "2e"? It's where a person is "gifted" and disabled at the same time.
My IQ can be a disadvantage, particularly, as I live in a society that doesn't, necessarily, appreciate "giftedness" and higher than average intelligence.

Those two lines describe a lot of my experience. I overheard comments from people all my life, swallowed a dictionary, walking encyclopedia, etc. Yet whenever anyone ever had a serious question it was always Ask Andrew, he's pretty cluey.

 

[Neri]

Those two lines describe a lot of my experience. I overheard comments from people all my life, swallowed a dictionary, walking encyclopedia, etc. Yet whenever anyone ever had a serious question it was always Ask Andrew, he's pretty cluey.

No wonder we click.

 

[jsilver256]

I don't think support needs, necessarily, have a higher correlation to IQ, although they can.

Not a 1:1 correlation but think of it as a "masking factor" for all disabilities in general not just autism.

 

[Neri]

Not a 1:1 correlation but think of it as a "masking factor" for all disabilities in general not just autism.

Yes. I think that is very true. And it's why I got to 50 without my diagnosis. Sigh.
I have had so much trouble being overlooked that I'm sure I would have recieved an ASD1 diagnosis if I didn't have all the debilitating trauma symptoms resulting from trying to cope without knowing or getting support all those years.

 

[Outdated]

I have had so much trouble being overlooked that I'm sure I would have recieved an ASD1 diagnosis if I didn't have all the debilitating trauma symptoms resulting from trying to cope without knowing or getting support all those years.

I think that's pretty much the same for me too, before and during my burnout whenever I tried to get any help from Centrelink they basically scoffed at me and I think back then if I'd gone for a diagnosis the result would have been ASD1. Post burnout was a different story, ASD2 and they basically handed me a pension with almost no trouble.

 

[jsilver256]

There really needs to be some research on what's taking place during this age, too many members here have a similar story of burning out in their 40s-50s.

 

[Outdated]

There really needs to be some research on what's taking place during this age, too many members here have a similar story of burning out in their 40s-50s.

My personal thought is that it's mostly just emotional exhaustion from trying to fit in with others all the time. 25 to 30 years seems to be about as much as we can take.

Not sure if there's any physical differences or not but I became a lot more aware of all my sensitivities after burning out, and this was before I knew anything about autism. Things I had been sensitive to all my life but could cope with became things that I now go to great lengths to avoid. Especially sounds and smells for me.

 

[jsilver256]

My personal thought is that it's mostly just emotional exhaustion from trying to fit in with others all the time. 25 to 30 years seems to be about as much as we can take.

Not sure if there's any physical differences or not but I became a lot more aware of all my sensitivities after burning out, and this was before I knew anything about autism. Things I had been sensitive to all my life but could cope with became things that I now go to great lengths to avoid. Especially sounds and smells for me.

Makes sense. I had taken to wearing pajamas almost all the time and working from bed. Drove my husband crazy.

With ASD diagnosis, I was at least be to identify the "why" as sensory sensitivities. I haven't worn pajamas during the day in forever.

 

[Jonn]

I had a low IQ during my test because it takes me longer to process information.

Same.
Unfortunately, speed is a factor in these tests.

 

[Jonn]

( and Aspoid at times; I'm way too playful with language).

Sister!
Where have you been?

 

[Jonn]

But, at least, the way it is now should help me, because, like you, burn out is crippling me and depreciating my functionality in some really debilitating ways.

I worked for 28 years straight.
It was torturous, and I burnt out at the end of it.
If I had to do it again I'd jump off a cliff.

 

[Jonn]

Otherwise, I'm so "mild" and "high-functioning" and "unobvious" on the spectrum that I often question whether I have it or not and feel I don't fit the autism mould like most other autistics do.

This suggests you are on the fringe of the autistic bell curve.
I am a lot more autistic than you...

Spoiler

No offence...

I just realised I was necroposting.
D'oh!

 

[Jonn]

There really needs to be some research on what's taking place during this age, too many members here have a similar story of burning out in their 40s-50s.

I burnt out at 50.
Well, before that but, I was determined to reach 50 before I retired.
I never looked back.
Life for me began at 50 + one minute.

 

[Neri]

At this stage, I am starting to live post chronic overwhelm.

I burnt out at 50.
Well, before that but, I was determined to reach 50 before I retired.
I never looked back.
Life for me began at 50 + one minute.

And I like it!
It's taken for me to completely crash and burn, and then hibernate, and have to come back from some terrible "nervous breakdown" situations.

I still have familial relationships that fry me and I have to avoid them. In some ways I would like to want to spend more time with family members, but, the truth is, it is stressful and exhausting to be in constant care giving mode and while I'm a big hearted person, my autism, and all the PTSD that's accompanied it, have really taken a toll.
My heart is a lot bigger than my autistic brain allows me to show.
I'm, hopefully, going to go into the role of mental health peer support worker, to support other socially clunky and neurally compromised people, but, only if our disability support system can support me to do that.

 

[Neri]

ASD2 was on my report card. But, strangely enough, I got a score of 39, which level 2 stops at 38 and Level 3 starts at 40. So, I consider I am hovering between 2 and 3.

I am not able to work; I am not able to associate for long; I need routine, otherwise, I get too stressed.

I do also have bad agoraphobia and the only time I can go out on my own, is very early in the morning, to go to our local bin, which is only across the road from our home.

I guess I would be considered as anti social. But, I do like people when they are nice. Just too many are not.

I'm curious about your agoraphobia, as I struggle with it too. I find I am anxious about other's, in my village, seeing me. Is that similar to yours?
I know what triggered mine. A lot of my own traumatic life experiences, and vicarious trauma brought about by living in very rough, low socio economic and troubled and violent neighborhoods. I think just the autism alone makes having to encounter any unstructured social situations anxiety invoking though.