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starkid
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01 May 2021, 11:38 pm

The online questionnaires and symptom lists for autism focus heavily on psychological and social traits (such as theory of mind and understanding of sarcasm). When people come to WP wondering whether they have autism, they usually have lists of vague symptoms like anxiety and "never fitting in."

Autism is not a mental disorder. I don't know why but it seems like many people overlook the associated medical issues, such as

lack of manual dexterity
chronic sleep problems
IBS
weak or absent sensations of pain, hunger, or need to use the bathroom
headaches associated with noise or visual stimulation
nausea caused by certain odors or food textures
Irlen syndrome
superhuman hearing

and so on. These kinds of experiences are easier than psychological and social traits for a person to self-identify, so it's curious that they rarely seem to come up.

Similarly, whether a person had (or still has) any developmental delays is a crucial question to ask. Do you still have trouble tying your shoes as an adult? Have trouble swallowing?

To be honest, I'm getting tired of the "I was a weird kid so maybe I'm autistic" stuff online. Autism, a neurological condition, creates notably different core experiences in sensory perception and biological functions as well as thinking processes, not just a life as a misunderstood outsider.


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AnotherAlien
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02 May 2021, 12:01 am

I agree. It drives us crazy to see tv shows supposedly about someone with AS and then everyone thinks if your not like the tv character you don't have it.



IsabellaLinton
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02 May 2021, 12:09 am

I agree with you starkid. Although those specific traits aren't listed in the diagnostic criteria they are certainly applicable and relevant. I feel like a lot of people focus on social aspects and don't even discuss sensory disorders or physical problems like misophonia, photophobia, poor interoception etc. In fact I feel quite alienated sometimes because I try to discuss those topics and it seems others can't relate to my work with Occupational Therapy. It sometimes makes me wonder how other people got diagnosed if they don't have sensory issues or physical and perceptual problems, since that was such a big part of my assessment. The online assessments are only the tip of the iceberg in my opinion, but it would be great if they were actually updated to represent what it's really like to be autistic.



Edna3362
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02 May 2021, 1:35 am

This, I completely agree. :lol:


Unfortunately, that's what most people are concerned about -- the socialization parts.

Nevermind why socialization is hard because of countless interferences, willing or not, compatibility and sociability or not.


It is not limited to the diagnosed or undiagnosed cases who are unable to relate with peers.
The same prioritized concerns coming from parents and professionals.


The social and psychological aspects overshadowed many things about autism.


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traven
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02 May 2021, 1:41 am

// §§§
big pharma & soc-scie
and the general unwellbeing for profit

other, another entrance for biotechstudies (moneymoney) and obscurantistic goals of transhumanism, ai, and energy transfer-usurpatoring master-de-engeneering (accountability for the organic, not the artificial)((paytime, there's a bill at the gates, charon for charity???)) eg, https://www.zdnet.com/article/google-go ... n-23andme/
//


yes the great lazyness in remaking the tests, why, must be not relevant at all,
like the library question, libraries are terrible these days, multimedia over all, and events,
or busloads of kids, i don't think you get over fears of busloads of kids any day,
but somehow we have to interpret the questions in reformulation to guess the real question??

the autist must guess the intention of the questions, or you ain't autistic?
typical nt-tom problems



Jiheisho
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02 May 2021, 10:40 am

starkid wrote:
I don't know why but it seems like many people overlook the associated medical issues, such as

lack of manual dexterity
chronic sleep problems
IBS
weak or absent sensations of pain, hunger, or need to use the bathroom
headaches associated with noise or visual stimulation
nausea caused by certain odors or food textures
Irlen syndrome
superhuman hearing

and so on. These kinds of experiences are easier than psychological and social traits for a person to self-identify, so it's curious that they rarely seem to come up.


Because none of them are an indication of autism.



IsabellaLinton
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02 May 2021, 1:44 pm

Jiheisho wrote:
starkid wrote:
I don't know why but it seems like many people overlook the associated medical issues, such as

lack of manual dexterity
chronic sleep problems
IBS
weak or absent sensations of pain, hunger, or need to use the bathroom
headaches associated with noise or visual stimulation
nausea caused by certain odors or food textures
Irlen syndrome
superhuman hearing

and so on. These kinds of experiences are easier than psychological and social traits for a person to self-identify, so it's curious that they rarely seem to come up.


Because none of them are an indication of autism.


I disagree, Jiheisho.

The DSM5 diagnostic criteria for ASD includes: "Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement)."

starkid's list gives many specific examples or manifestations of sensory "hyper-reactivity and / or sensory hypo-sensitivity" as well as "adverse responses" to sensory stimuli, as defined in the DSM5.

Her examples describe ways in which sensory dysregulation has adverse effects on our daily lives: "Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning." (from DSM5)

Specifically:

- Chronic sleep problems
Insomnia is often related to "sensory hyper-reactivity" or an "adverse sensory response" (to sound, light, texture etc).
It's also related to stress from sensory / social overload, and the "hyper-reactivity" of our limbic systems (fight / flight).
This affects our daily lives.

- Weak or absent sensations
This is known as sensory "hypo-reactivity", or "apparent indifference to pain / temperature".
This is similar to having a sensory shutdown. For some of us it's permanent in relation to our body sensations.
This "indifference to pain / temperature" (DSM5) puts us at risk of injury and affects our daily lives.
I work with an autism Occupational Therapist for this phenomenon - it's called having poor Interoception awareness.

- Headaches with noise or visual stimulation
Headaches are caused by "hyper-reactivity" and an "adverse response" to sensory stimuli (sound, smell, and light).
This affects our daily lives.

- Nausea from odors and textures
Nausea is caused by "sensory hyper-reactivity" and an "adverse response" to sensory stimuli (smell and touch).
This affects our daily lives.

- Irlen Syndrome
Irlen = "sensory hyper- or hypo-reactivity" to light and sensory stimuli (colour contrast, print material, visual stimuli).
It's an "adverse response" to our visual environment as described in the DSM5.
This affects our daily lives and it's often related to Photophobia:

- Photophobia
Photophobia is caused by "sensory hyper-reactivity" to sensory stimuli (bright light).
Bright light causes sensory and visual overload since there is too much visual information for our brain to process.
Our brains can't process seeing so many colours / things at once in daylight, or brightly-lit environments.
That's why many of us feel more comfortable in the dark, seeing and processing fewer things at once.
We also hyper-react to small details, and sensory stimuli such as the quick flickering of fluorescent lights.
It connects to our involuntary "fascination with lights and movement" (DSM5) because we can't ignore the flicker. ^
This affects our daily lives.

- Super-human hearing
Also known as Hyperacusis (hyper-reactivity to sound stimuli).
Hyperacusis is often concurrent with Misophonia (physical pain or emotional / rage responses to sound stimuli).
This affects our daily lives (insomnia, inability to socialise, agoraphobia, etc.)

The DSM doesn't talk about gut disorders such as IBS but there's a known correlation with ASD and digestion.
IBS is our digestive system being "hyper- or hypo-reactive" to the food stimuli, and to physiological stress.

Anecdotal evidence also shows we have issues with balance and proprioception (dexterity and fine / gross motor control).
This is related to the way our brains process visual and spatial information ("hyper- and hypo-reactivity" to input).
It's an "adverse response" in reaction to an overwhelmed nervous system.
It affects our daily lives.



Udinaas
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02 May 2021, 4:30 pm

starkid wrote:
The online questionnaires and symptom lists for autism focus heavily on psychological and social traits (such as theory of mind and understanding of sarcasm). When people come to WP wondering whether they have autism, they usually have lists of vague symptoms like anxiety and "never fitting in."

Autism is not a mental disorder. I don't know why but it seems like many people overlook the associated medical issues, such as

lack of manual dexterity
chronic sleep problems
IBS
weak or absent sensations of pain, hunger, or need to use the bathroom
headaches associated with noise or visual stimulation
nausea caused by certain odors or food textures
Irlen syndrome
superhuman hearing

and so on. These kinds of experiences are easier than psychological and social traits for a person to self-identify, so it's curious that they rarely seem to come up.

Similarly, whether a person had (or still has) any developmental delays is a crucial question to ask. Do you still have trouble tying your shoes as an adult? Have trouble swallowing?

To be honest, I'm getting tired of the "I was a weird kid so maybe I'm autistic" stuff online. Autism, a neurological condition, creates notably different core experiences in sensory perception and biological functions as well as thinking processes, not just a life as a misunderstood outsider.

What percentages of autistic people have those things compared to the social stuff? Are those things less focused on diagnostically because NTs don't care about them or because they are less universal in autism? I have only the first two of those things but not to a large extent (also lactose intolerance, which could be mistaken for IBS, and some sensory issues when I was a kid). I'm mainly affected socially. And if there's no one autism gene but different combinations of genes can cause autism, why couldn't some people end up with the social symptoms but not the medical ones? Should people who are disabled socially but not physically just get over it?



Udinaas
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02 May 2021, 4:38 pm

I'm not trying to dismiss the medical issues but I don't want to gatekeep the community against people that might need help.



IsabellaLinton
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02 May 2021, 5:27 pm

Udinaas wrote:
What percentages of autistic people have those things compared to the social stuff?


I don't know what the percentage is, but it's safe to say ALL people who were clinically diagnosed with ASD using the DSM5 met the criteria in Section B, which pertains to restrictive behaviours, sensory sensitivities, and "adverse reactions" to sensory stimuli. They wouldn't be autistic, otherwise. If the problems were only in their childhood, I don't understand how they were identified on the spectrum as adults. They wouldn't meet the diagnostic threshold.

I agree that the degree or extent of our "adverse reactions" can vary, but they still exist for us all. Our degree of impairment is how support levels are determined. I'm diagnosed as Level 2 or Moderate ASD. I need significant support with social issues, but also with Part B challenges. Without support, I'd be sat home unable to function in the company of others, or even alone.

I've worked with an Occupational Therapist, a social worker, and a psychologist learning how to deal with photophobia, misophonia, my lack of Interoceptive awareness, Alexithymia, and physical manifestations like migraines and nausea from sensory stimuli. At one point last summer I was doing about 20 hours of OT per week, plus homework, learning things like "How to distinguish between flavours" (sweet / salty / sour, etc) - which I can't do because of hypo-sensitivity to taste, or "How to know if I'm upset", "How to go outside if it's sunny", "How to not have a meltdown in public if someone crinkles paper", and "How to know if I'm hungry".

I can't read my own body cues and it's taken extensive training to learn the basics as an adult. I'm also learning adaptive strategies for misophonia, photophobia, etc., as well as selective mutism, verbal communication, and receptive language.

Perhaps there are more people here who are diagnosed "Aspergers" on the old system, or even Level 1 ASD on the new system. Maybe that's the difference. I agree that most people here don't complain of Part B issues as much as I do, but I've never understood how they were diagnosed without having those complaints, or understanding that sensory sensitivities are a very big deal for some of us. Mine are so bad I can never be married and it's even difficult for me to date because smells, sounds, and a change to my sensory environment can cause me to shut down or melt down. I can't even share a bed to sleep overnight with my boyfriend without considerable sensory distress. That's why I can relate to starkid.

Udinaas wrote:
Are those things less focused on diagnostically because NTs don't care about them or because they are less universal in autism?


To be honest, I don't know what you mean by this. ^ Those things aren't "less focused on diagnostically". Parts A and B are given equal consideration in a clinical assessment. If anything, I think Part B gets more emphasis because it's demonstrable and can't be explained by other diagnoses like social anxiety or interpersonal trauma. In my 10+ hour ASD assessment very little of the focus was on social challenges. A majority of the discussion and the tests were related to verbal vs non-verbal intelligence, and the impact of my repetitive, restrictive or sensory issues. My daughter was assessed and she said a lot of her testing was also Part B-related. Anyone can "fake" Part A by saying they don't like social events. Many NTs who are introverted or traumatised don't like social events. That in itself can't be a diagnostic tool.

The descriptors in Part B are very relevant for me, to the extent that I am still "Autistic" and I have impaired daily function / adaptability, even when I'm entirely alone with no social obligations to meet. I would be autistic even if I lived alone on the moon, because of my Part B difficulties with physical and sensory input. Of course social challenges are relevant for me as well, but my point is that many people here, or people on the autism spectrum in general, seem to focus almost exclusively on social impediments while excluding, negating, or minimising the debilitating experiences many autistic people have in Part B.


Udinaas wrote:
Why couldn't some people end up with the social symptoms but not the medical ones?


I'm sure some people have MORE symptoms from Part A, but again they need to provide sufficient evidence from Part B in order to be diagnosed autistic. This is why I think some (underscore "SOME") self-identified people might be missing the mark. They can relate to the social stressors of Part A, and they might recall a few stressors from Part B in their childhood, or else they say "Oh I used to stim, but I stopped when I got older", but perhaps they aren't actually autistic. I'm not discrediting all self-identified people so please don't take it that way. I'm just saying that self-assessment tools online are generally geared toward Part A, like starkid stated. I wish the self-assessment tools were more reflective of a true clinical assessment which considers Part B with significant importance.

Another consideration is that many people who are autistic might have "adverse reactions" to sensory stimuli but perhaps their reactions aren't physical in nature. Maybe instead of developing a migraine from the scent of flowers like I do, they simply dislike flowers and avoid them. Maybe instead of wanting to punch a brick wall if they experience misophonia, they are able to walk away from the sound or control their emotional response. I can't. I think the sliding scale belongs on that term "adverse reactions", and that it should be given a lot more attention in online media.


Udinaas wrote:
Should people who are disabled socially but not physically just get over it?


No. People who are disabled socially but not physically might be disabled emotionally by sensory stimuli. Our emotions are physiological just like our physical bodies. It's all connected to the limbic brain, the vagus nerve, and our parasympathetic nervous system. No one should be told to "get over" anything, especially if they're autistic.



Udinaas
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02 May 2021, 6:25 pm

IsabellaLinton wrote:
Udinaas wrote:
What percentages of autistic people have those things compared to the social stuff?


I don't know what the percentage is, but it's safe to say ALL people who were clinically diagnosed with ASD using the DSM5 met the criteria in Section B, which pertains to restrictive behaviours, sensory sensitivities, and "adverse reactions" to sensory stimuli. They wouldn't be autistic, otherwise. If the problems were only in their childhood, I don't understand how they were identified on the spectrum as adults. They wouldn't meet the diagnostic threshold.

I agree that the degree or extent of our "adverse reactions" can vary, but they still exist for us all. Our degree of impairment is how support levels are determined. I'm diagnosed as Level 2 or Moderate ASD. I need significant support with social issues, but also with Part B challenges. Without support, I'd be sat home unable to function in the company of others, or even alone.

I've worked with an Occupational Therapist, a social worker, and a psychologist learning how to deal with photophobia, misophonia, my lack of Interoceptive awareness, Alexithymia, and physical manifestations like migraines and nausea from sensory stimuli. At one point last summer I was doing about 20 hours of OT per week, plus homework, learning things like "How to distinguish between flavours" (sweet / salty / sour, etc) - which I can't do because of hypo-sensitivity to taste, or "How to know if I'm upset", "How to go outside if it's sunny", "How to not have a meltdown in public if someone crinkles paper", and "How to know if I'm hungry".

I can't read my own body cues and it's taken extensive training to learn the basics as an adult. I'm also learning adaptive strategies for misophonia, photophobia, etc., as well as selective mutism, verbal communication, and receptive language.

Perhaps there are more people here who are diagnosed "Aspergers" on the old system, or even Level 1 ASD on the new system. Maybe that's the difference. I agree that most people here don't complain of Part B issues as much as I do, but I've never understood how they were diagnosed without having those complaints, or understanding that sensory sensitivities are a very big deal for some of us. Mine are so bad I can never be married and it's even difficult for me to date because smells, sounds, and a change to my sensory environment can cause me to shut down or melt down. I can't even share a bed to sleep overnight with my boyfriend without considerable sensory distress. That's why I can relate to starkid.

Udinaas wrote:
Are those things less focused on diagnostically because NTs don't care about them or because they are less universal in autism?


To be honest, I don't know what you mean by this. ^ Those things aren't "less focused on diagnostically". Parts A and B are given equal consideration in a clinical assessment. If anything, I think Part B gets more emphasis because it's demonstrable and can't be explained by other diagnoses like social anxiety or interpersonal trauma. In my 10+ hour ASD assessment very little of the focus was on social challenges. A majority of the discussion and the tests were related to verbal vs non-verbal intelligence, and the impact of my repetitive, restrictive or sensory issues. My daughter was assessed and she said a lot of her testing was also Part B-related. Anyone can "fake" Part A by saying they don't like social events. Many NTs who are introverted or traumatised don't like social events. That in itself can't be a diagnostic tool.

The descriptors in Part B are very relevant for me, to the extent that I am still "Autistic" and I have impaired daily function / adaptability, even when I'm entirely alone with no social obligations to meet. I would be autistic even if I lived alone on the moon, because of my Part B difficulties with physical and sensory input. Of course social challenges are relevant for me as well, but my point is that many people here, or people on the autism spectrum in general, seem to focus almost exclusively on social impediments while excluding, negating, or minimising the debilitating experiences many autistic people have in Part B.


Udinaas wrote:
Why couldn't some people end up with the social symptoms but not the medical ones?


I'm sure some people have MORE symptoms from Part A, but again they need to provide sufficient evidence from Part B in order to be diagnosed autistic. This is why I think some (underscore "SOME") self-identified people might be missing the mark. They can relate to the social stressors of Part A, and they might recall a few stressors from Part B in their childhood, or else they say "Oh I used to stim, but I stopped when I got older", but perhaps they aren't actually autistic. I'm not discrediting all self-identified people so please don't take it that way. I'm just saying that self-assessment tools online are generally geared toward Part A, like starkid stated. I wish the self-assessment tools were more reflective of a true clinical assessment which considers Part B with significant importance.

Another consideration is that many people who are autistic might have "adverse reactions" to sensory stimuli but perhaps their reactions aren't physical in nature. Maybe instead of developing a migraine from the scent of flowers like I do, they simply dislike flowers and avoid them. Maybe instead of wanting to punch a brick wall if they experience misophonia, they are able to walk away from the sound or control their emotional response. I can't. I think the sliding scale belongs on that term "adverse reactions", and that it should be given a lot more attention in online media.


Udinaas wrote:
Should people who are disabled socially but not physically just get over it?


No. People who are disabled socially but not physically might be disabled emotionally by sensory stimuli. Our emotions are physiological just like our physical bodies. It's all connected to the limbic brain, the vagus nerve, and our parasympathetic nervous system. No one should be told to "get over" anything, especially if they're autistic.

That last question was rhetorical. I was annoyed because OP seemed dismissive of people that are mainly affected on the social side. I'm diagnosed with Asperger's and I do have other traits in addition to the social stuff (mostly stimming which I don't consider a problem in itself, only how people react). And I have other neutral traits with social components like special interests. My sensory issues from early childhood can return if I'm stressed enough but it happens subconsciously. If I didn't know I was autistic I wouldn't have made the connection. I'd just think there was something wrong with me emotionally. I could have become one of the people starkid complained about if my mom didn't see an article about Asperger's and get me tested.
I'm sorry if I offended you and that you have to go through all that.



IsabellaLinton
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02 May 2021, 6:33 pm

It's OK :P I didn't think you were offended. It's just my normal tendency to advocate for Part B issues, which I truly don't think are given enough attention in self-assessment material or in public awareness about autism. I wasn't upset and I didn't think you were, but I do tend to demonstrate this level of detail when it comes to discussing autism:

"Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., excessively circumscribed or perseverative interests)". DSM5

I'm sorry if you thought I was upset. I truly just hyper-focus on answering questions thoroughly lol.

I realised afterward that I may have overstated my opinion a little because sensory issues are only one of the four choices required by a person in Part B for diagnosis. Regardless my assessment had LOTS of questions about sensory problems and I don't think many people realise this will happen when they book their testing. They'll be asked a lot about Part B and they'll need to validate everything with evidence from their developmental history and /or a second person's input.

I sincerely hope you didn't feel that my response was an affront to you or anyone on WP. It was just my daily rant because I feel like such a freak with all my sensory problems. They really do interfere with my life as you can see.

Let's go play some word games and forget about it - lol. 8)



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02 May 2021, 7:37 pm

I was 5 or 6 when assessed for the S word. There were physical issues way back then. The result was negative, and nothing else was explored as a possible explanation. It was very different c 1962 as to what was known about such things.

There's not just social issues in my case. There's clumsiness/poor hand-eye coordination,poor manual/technical skills, being prone to dehydration due to poor interoception, also due to interoception difficulty knowing that I'm full up after eating,chronic constipation, sleep problems stretching back to when I was a baby(initial insomnia), migraines, mild photo sensitivity poor handwriting,astigmatism, poor spatial awareness,peripheral vision problems,poor sense of direction.

The physical can impact on the social as this article from 2007 shows:

Quote:
A new study looking at the connections between athletic skill and social acceptance among school children has found that kids place a great deal of value on athletic ability, and youngsters deemed unskilled by their peers often experience sadness, isolation and social rejection at school.


https://www.sciencedaily.com/releases/2 ... 085951.htm


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02 May 2021, 7:47 pm

Good point, firemonkey.

I stim so much it leads to self-harm, and I had to be medicated with Risperidone to prevent physical injuries. Even now I get migraines from stims that I do in my sleep, like bruxism. My jaw gets so tight it affects my neck muscles and my ability to eat. I chew holes through my nightguards when I'm asleep, and it damages my teeth.

There are lots of physical issues associated with autism!



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02 May 2021, 7:57 pm

IsabellaLinton wrote:
Good point, firemonkey.

I stim so much it leads to self-harm, and I had to be medicated with Risperidone to prevent physical injuries. Even now I get migraines from stims that I do in my sleep, like bruxism. My jaw gets so tight it affects my neck muscles and my ability to eat. I chew holes through my nightguards when I'm asleep, and it damages my teeth.

There are lots of physical issues associated with autism!

My teeth and jaw joints are messed up from grinding and clenching my teeth ever since I was a toddler. Not grinding/clenching my teeth actually feels weird, like I need the pressure or something, so I just do those things without even thinking. Sensory issues are so weird and damaging sometimes.


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02 May 2021, 8:17 pm

My wife used to say I grind my teeth at night. There's also this that I'm not sure is ASD related. That clicking sound when you move your jaw. Difficulty opening your mouth wide. I tend to feel like I want to gag when I try to open my mouth wide.


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