People who don't recieve a diagnosis but have difficulties

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Dandansson
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18 Jun 2021, 3:55 am

Do you have any experience with this?
I mean, people who are not "NTs" but still don't have enough symptoms to get a diagnosis.
I know people who have serious issues but would only receive a medical diagnosis and no psychiatric diagnosis.
I know people who can't stand socializing in groups but would never recieve a psychiatric diagnosis.
Would a medical diagnosis describe such an issue? Can it be a medical rather than psychiatric issue for someone?
Would a migraine diagnosis be enough?



Brainiac42
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18 Jun 2021, 7:49 am

I have social difficulties if I am not comfortable around a crowd/person, and even if I am I still sometimes have trouble making conversation that is not about a special interest or something random. I have trouble with eye contact, especially with people I don’t know. I become obsessed with interests and it’s all I can talk/think about. I have anxiety and obsessive thoughts. A lot of my symptoms are internal, and could be seen as social anxiety externally, I believe. I spoke early as a baby, saying my first word at 8 months. No real developmental delays, except I remember often playing alone on the playground. I’ve never been diagnosed, and I think it’s possible I’d have a hard time due to the mask I’ve developed to socialize. I think of it as a toolbox of tips I’ve learned over the years watching others that I dig around for and use as I’m socializing. I know how to appear like others when socializing but it’s still continuing the conversation I suffer with. I’m not sure that’s enough to get me a diagnosis.



Dandansson
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18 Jun 2021, 9:15 am

people talk a lot about how difficult fluorescent light can be for people with ASD.
I never had this difficulty at all. So I don't understand what this is all about. I even met a woman who could not stand the sound of a piano (must be difficult to be such a person). As a pianist I don't understand this at all.
Anyway, if you ever had difficulties with certain stimuli please answer this question:
Did you recieve another diagnosis? Or did they say that it is an ASD issue?

I know there are people out there who have difficulties with social situations but are good at being social in itself (which I as an "aspie" are not) but have other issues, eg with stimuli or anxiety.



kraftiekortie
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18 Jun 2021, 9:21 am

Autism is a spectrum. I don’t have too many sensory difficulties…..but I have some.

As the cliche goes: when you meet a person with autism, you meet a person with autism.

I was diagnosed with autism because it was obvious that I was autistic. Back in the 1960s, only people obviously autistic were diagnosed with autism.

It’s a little fuzzier today, alas….



Brainiac42
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18 Jun 2021, 9:30 am

Dandansson wrote:
people talk a lot about how difficult fluorescent light can be for people with ASD.
I never had this difficulty at all. So I don't understand what this is all about. I even met a woman who could not stand the sound of a piano (must be difficult to be such a person). As a pianist I don't understand this at all.
Anyway, if you ever had difficulties with certain stimuli please answer this question:
Did you recieve another diagnosis? Or did they say that it is an ASD issue?

I know there are people out there who have difficulties with social situations but are good at being social in itself (which I as an "aspie" are not) but have other issues, eg with stimuli or anxiety.


Someone who has had a formal diagnosis may be able to answer this more accurately. I’ve had issues with smells since I was a child, and textures. I would gag when trying certain foods due to the texture, and cry when I’d smell a certain smell that was overwhelming. My mom laughs about how I’ve always been this way, but never got me a diagnosis. I am not talking bad about her though, as it’s often not a first thought to take your child to the doctor for issues like that when some children have more serious, and more obvious issues.

In short: My sensory issues were not seen as ASD issues, but just sensory issues, by my parents. When I was a child my parents thought of the severe cases when they heard autism, and I don’t think the thought would have ever entered their mind. They’d only think to take me if I had developmental delays (not speaking until a late age) which I did not.



Dandansson
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18 Jun 2021, 10:56 am

kraftiekortie wrote:
Autism is a spectrum. I don’t have too many sensory difficulties…..but I have some.

As the cliche goes: when you meet a person with autism, you meet a person with autism.

I was diagnosed with autism because it was obvious that I was autistic. Back in the 1960s, only people obviously autistic were diagnosed with autism.

It’s a little fuzzier today, alas….

Sensory is actually a part of ASD and not another diagnosis?
It sure doesn't sounds like asperger's syndrome to me.



kraftiekortie
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18 Jun 2021, 12:21 pm

It’s actually a big part of “classic” autism—though it can happen in Aspergers, too.



IsabellaLinton
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18 Jun 2021, 12:47 pm

Dandansson wrote:
people talk a lot about how difficult fluorescent light can be for people with ASD.
I never had this difficulty at all. So I don't understand what this is all about. I even met a woman who could not stand the sound of a piano (must be difficult to be such a person). As a pianist I don't understand this at all.
Anyway, if you ever had difficulties with certain stimuli please answer this question:
Did you recieve another diagnosis? Or did they say that it is an ASD issue?

I know there are people out there who have difficulties with social situations but are good at being social in itself (which I as an "aspie" are not) but have other issues, eg with stimuli or anxiety.


I'm diagnosed with Moderate Autism (Level 2) as well as Sensory Processing Disorder including Misophonia and Hyperacusis. Piano can really get on my nerves too, especially Chopin. It makes me feel like someone is poking me. Guitar or strings have always been more soothing. Likewise I can't do fluorescent lighting or even daylight without significant discomfort and it normally causes migraines. This was also part of my ASD assessment, and a subsequent OT assessment for sensory support.

To answer your question yes the existence of SPD was part of my autism diagnosis, but since I need specialised support for it I was also assessed and later treated by OT.

My SPD was identified during my autism assessment and again by my Occupational Therapist.



ToughDiamond
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18 Jun 2021, 12:52 pm

Dandansson wrote:
I know people who can't stand socializing in groups but would never recieve a psychiatric diagnosis.

In my case having an official diagnosis hasn't made any difference to any social problems I might have. I was never offered any help to deal with ASD on a social level as a result of the DX.

It did make a difference in the workplace - my job was more secure and they had to make some adjustments. When I went to be evaluated for ASD I was quite scared about what would happen if they said I didn't have the condition, because by then I'd figured out that my problems at work were mostly to do with them expecting me to do things that an Aspie can't reasonably be expected to do. There was quite a long wait before the assessment.

A counsellor told me I could make my life easier by telling my employer I was going to be assessed for ASD, because then they'd have to treat me as if I had the condition until the DX was done, but I didn't dare tell them, because I feared they'd hold it against me if the DX turned out negative. The bosses had been known to assume employees who complained of illness or too much stress were just making it up to get an easy ride. So I can readily sympathise with any employee who feels they have ASD but can't get a diagnosis, and I'm sure such people exist, because diagnosticians don't always get it right.



The_Znof
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18 Jun 2021, 1:22 pm

Dandansson wrote:
Do you have any experience with this?


Yes, I had sudden onset Autism as a child, and switched out my ability to talk for literately walking on my toes like a ballet dancer when exited.

I would point at stuff and go HMMM? HMMM?

I did learn to talk [again], but not very well..

and then skool came along, enter complex post tramatic stress disorter..

not sure that even exists [officially], but I find it a bit fishy that after becoming temporarly completely non verbal, I cant get an [official] autism diagnosis.

its no big deal to me, as I passed ADHD with flying carpets, and got hooked up on full disability, very deservadly IMO..

Point being, sadly there probably are autistics who fail the dogmatic official test, and this will suck for most of them, sorry.



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18 Jun 2021, 3:42 pm

IsabellaLinton wrote:
Piano can really get on my nerves too, especially Chopin. It makes me feel like someone is poking me. Guitar or strings have always been more soothing.


Yes. I get that at times when pianos are played in certain ways and I am next to them (As in being in the same room and the room is not that large).
My Dad's job was a carpenter. Sometimes he wanted me to hold something while he hammered and I would be soo nurvous because I could not hold my ears and hold what he needed me to hold at the same time. If I use a hammer myself it is less of an issue because I am somehow ready prepared for it so the shock of the suddenness of the noise is less of a shock.
I had to spend a week or two in an engineering works and each time the heavy stamp machines came down I would jump. I was ok if I was watching the guy use the machine, but when one is supposed to be using a massive lathe, it is more then distracting being in the same building. I was awfully "Jumpy" due to that.
I have always wanted to weld but I am just to nurvous to be around a welder. My Dad gave up trying to teach me to weld because I was just soo nurvous around it. It was the suddenness of the spark of thr weld that caused me the issues.
Sudden bangs...
Do you know that in the bicycle mechanics profession which I have done for 25+ years and eventually had to give it up due to shutdowns and burnouts etc, but even working on my own bikes I can be nurvous because though it may only happen around once or twice a year or a few times a year, a tube explosion leaves me in shock for weeks or months after it has happened. I am very carefully checking every pump of air I put into the tyre. Also the smells were causing me shutdowns. The oils and paints one uses as part of ones job. Oh. I had to sign to say I would use gloves and i couldn't. The only way I could manage it was to cut all the fingers off. It was the only way and I never could wear facemasks for more then about ten seconds! I just didn't breathe. Never have got padt that one. I could wear safety glasses but it took me years of flies going into my eyes while cycling to get used to them, as any form of glasses on my face would make my nose feel funny. Less so now though, but it took me years.

But piano when certain notes are played suddenly are like someone is poking me in the ribs.

Music... I always used to cry when someone put beautiful music on. I always wanted it to be turned off so I didn't cry. I did not like or want to cry.


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Dandansson
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20 Jun 2021, 3:34 am

Mountain Goat wrote:
IsabellaLinton wrote:
Piano can really get on my nerves too, especially Chopin. It makes me feel like someone is poking me. Guitar or strings have always been more soothing.


Yes. I get that at times when pianos are played in certain ways and I am next to them (As in being in the same room and the room is not that large).
My Dad's job was a carpenter. Sometimes he wanted me to hold something while he hammered and I would be soo nurvous because I could not hold my ears and hold what he needed me to hold at the same time. If I use a hammer myself it is less of an issue because I am somehow ready prepared for it so the shock of the suddenness of the noise is less of a shock.
I had to spend a week or two in an engineering works and each time the heavy stamp machines came down I would jump. I was ok if I was watching the guy use the machine, but when one is supposed to be using a massive lathe, it is more then distracting being in the same building. I was awfully "Jumpy" due to that.
I have always wanted to weld but I am just to nurvous to be around a welder. My Dad gave up trying to teach me to weld because I was just soo nurvous around it. It was the suddenness of the spark of thr weld that caused me the issues.
Sudden bangs...
Do you know that in the bicycle mechanics profession which I have done for 25+ years and eventually had to give it up due to shutdowns and burnouts etc, but even working on my own bikes I can be nurvous because though it may only happen around once or twice a year or a few times a year, a tube explosion leaves me in shock for weeks or months after it has happened. I am very carefully checking every pump of air I put into the tyre. Also the smells were causing me shutdowns. The oils and paints one uses as part of ones job. Oh. I had to sign to say I would use gloves and i couldn't. The only way I could manage it was to cut all the fingers off. It was the only way and I never could wear facemasks for more then about ten seconds! I just didn't breathe. Never have got padt that one. I could wear safety glasses but it took me years of flies going into my eyes while cycling to get used to them, as any form of glasses on my face would make my nose feel funny. Less so now though, but it took me years.

But piano when certain notes are played suddenly are like someone is poking me in the ribs.

Music... I always used to cry when someone put beautiful music on. I always wanted it to be turned off so I didn't cry. I did not like or want to cry.

So it's all about the hammers?

IsabellaLinton wrote:
Dandansson wrote:
people talk a lot about how difficult fluorescent light can be for people with ASD.
I never had this difficulty at all. So I don't understand what this is all about. I even met a woman who could not stand the sound of a piano (must be difficult to be such a person). As a pianist I don't understand this at all.
Anyway, if you ever had difficulties with certain stimuli please answer this question:
Did you recieve another diagnosis? Or did they say that it is an ASD issue?

I know there are people out there who have difficulties with social situations but are good at being social in itself (which I as an "aspie" are not) but have other issues, eg with stimuli or anxiety.


I'm diagnosed with Moderate Autism (Level 2) as well as Sensory Processing Disorder including Misophonia and Hyperacusis. Piano can really get on my nerves too, especially Chopin. It makes me feel like someone is poking me. Guitar or strings have always been more soothing. Likewise I can't do fluorescent lighting or even daylight without significant discomfort and it normally causes migraines. This was also part of my ASD assessment, and a subsequent OT assessment for sensory support.

To answer your question yes the existence of SPD was part of my autism diagnosis, but since I need specialised support for it I was also assessed and later treated by OT.

My SPD was identified during my autism assessment and again by my Occupational Therapist.

What is it about the sound of pianos that you cannot stand?
Is it the volume or something else? And why Chopin?
Many people seem to have difficulties with the sirens of firetrucks. I kinda like that sound.



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20 Jun 2021, 11:03 am

I have a lot of difficulties, but haven't been able to get a diagnosis despite being assessed twice. I don't think I'd really qualify for any "physical" diagnoses that could explain some of my symptoms, unless my sensory issues and dyspraxia count as a physical issue?


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Dandansson
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21 Jun 2021, 4:24 am

HeroOfHyrule wrote:
I have a lot of difficulties, but haven't been able to get a diagnosis despite being assessed twice. I don't think I'd really qualify for any "physical" diagnoses that could explain some of my symptoms, unless my sensory issues and dyspraxia count as a physical issue?

No diagnosis?