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SocOfAutism
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29 Dec 2016, 11:46 am

Eloa wrote:
kraftiekortie wrote:
The previous poster is only comparing autism to red hair because they both are about as common as each other, according to the poster.

Hi, kraftiekortie, I do not understand comparing red hair to autism, it does not make sense to me. And maybe both is common but still I do not understand, because blond hair is common as well or brown or dark hair but the impact of having autism or a hair-colour to me is not comparable, because I do have reddish-brown hair but it does not cause any trouble in every day functioning.
I really do not understand.
Thank you for answering me, kraftiekortie!


Yeah, sorry, I guess that can seem flippant if you're not familiar with my outlook on autism. I first see autistic people as simply different and things like sensitivity as a problem with being in a world not suited for autistics, not an innate problem with autistics themselves.

It may not seem apparent from my picture, where my hair looks kind of brown, but I actually have red hair myself. This is part of why I use this convenient statistic. And yes, I meant it in the way that Kraftie explained. Just that red haired people are a group of people and autistics are another group of people and the two groups happen to be about the same size. Thanks Kraftie. :)

FYI- the rate of gay men and lesbian women is also roughly the same size group as red haired people and of autistic people (this rate is something like 1.5%-1.65% I believe, but I can look it up). As a comparison, black people in the US are something like 12% and transgender people are something like 0.2%.



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29 Dec 2016, 1:19 pm

Quote:
size group as red haired people


Where? The world as a whole? The US?



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29 Dec 2016, 2:33 pm

I've heard the figure of 10% quoted for the prevalence of gay men.



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29 Dec 2016, 4:52 pm

I have very mild autism myself. A lot of people don't notice it because I don't do anything to make it more obvious. I know I do have it because I still struggle a lot with expressing myself, socializing, dealing with my emotions and many other things as well. There are times when I will stim at home, but I never do it out in public though. I don't know why, but I just don't. Perhaps because I have learned not to. It really depends on how well you are known to the person. Most of my issues end up being on the inside because there's just so many people that don't understand me.


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friedmacguffins
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29 Dec 2016, 4:58 pm

What was supposed to tell other people, living outside of your head, that you were autistic.



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29 Dec 2016, 5:04 pm

The_Face_of_Boo wrote:
underwater wrote:
The_Face_of_Boo wrote:
underwater wrote:
EzraS wrote:
If nobody can tell if someone is autistic, like people ask if they should tell their, coworkers, friends, siblings and parents that they are autistic, how can they have autism? I mean how can it be so invisible, even their parents never noticed it? I just don't get it sometimes.


To return to the original topic: you are ignoring the time aspect of this. A lot of problems that are obvious in childhood become masked in adulthood. Boo is a perfect example of this. You say yourself, Boo, that people don't know you are autistic. Yet you are.



Nope, I am not entirely sure that I am one; at least not anymore.


Aah. Having doubts? You're sure obsessive enough, but yes, it is more than that.
I'd like to point out one thing, though: I think some of the autistics who have grown up in tighter communities and with strong family ties tend to have better social skills, simply because they get a lot more social learning crammed into their days. It's hard to imagine, if you're living in a very sociable environment, quite how isolated people can become in some Western countries, North America in particular.



I don't know if this is true, but in my case I don't think it is - I live in a very sociable community yet with typically Eastern family ties... yet I always had very very few friends, and now after those friends moved/married , I spend most of my weekends alone - I am a total lone wolf now.

I live way less sociably than the typical fellow countrymen.

I did spend some time, during work travels that lasted for weeks, with Europeans. Most of them Czechs, which you may consider them as Eastern/Central Europeans, but they are pretty much Westernized - they are only slightly less sociable than my fella countrymen, but still the gap between me and them feels big.

One reason of my doubts is because I don't have an official diagnosis, and I am not dying to seek for one for two reasons:

First Reason:

I found out about AS around 2006; I emailed a doctor back then, residing in UK, telling her details about my life, childhood, and current situation ....everything, and got this reply (yes, I just found it in my email):

Quote:
Dear ****,
Thank you for contacting me and telling me your story.
There is no specific medical test or scan that gives a diagnosis for autism
spectrum disorders.
From your story I do think it is likely that you are on the autism spectrum and

are now most like a young person with Asperger syndrome. If you had been
assessed when first at school you would probably have been described as 'high
functioning autism' (HFA), as your language development was delayed. However

when children's language develops as well as yours has done we find they are
similar to young people with Asperger syndrome, so I think Asperger syndrome is
probably the right description for you now. Young people with Asperger syndrome

often have many talents such as being logical, honest and direct with their
opinion, a trustworthy friend and knowledgeable in their areas of interest. Also
you will find if you read about Asperger syndrome you will definitely not have
all the features described in this group of people. However you may find it
helpful to read about Aperger syndrome and use some of the very good websites of
Tony Attwood or Carol Gray.


Then I contacted "The Lebanese Autism Society" ( which is the only local entity concerned in this matter) asking her the same detailed question - , because back then I was thinking to seek for an official diagnosis and contacting them and didn't know where to start so contacting those was the logical first step -

Her reply was (Translated):

Quote:
from: Lebanese Autism Society
to: ****@gmail.com
date: Fri, Mar 31, 2006 at 2:20 PM
subject: RE: Autism , question.

Dear ***,

I see that you did a great achievement in your studies,you are doing a great job. Why focusing on whether you have autism features or not?

I think we shall meet and talk about it.

Can you please call on my cell phone ****

or e.mail me your phone nbr.i will call you.

best regards



My reply was "I ll contact you when I can" and I left it at that, I didn't pursue it any further because I could tell that she would have lectured me how that I am functionally fine and I shouldn't worry about it ; It was very obvious the direction of this conversation would had taken place.

and this came from the head of this organization.

After further pondering, it was pretty obvious that those autism experts do not really view HFA/AS as Autism, as the long the person can talk, have a job and functional, and if it's not visually obvious to people (ie. you look normal to me) then, for them, it is not real Autism.

They only treat and cater for the *obvious* Autism cases, the Classic Autism.



Second Reason:

I don't have faith in Psychiatry in general, I have read enough about it and their methods, and I don't really view it as a real scientific medical field, and the way they do stuff sound pretty pseudo-scientific , too trial-and-error and unscientific.
They get things right sometimes, but they get things wrong, extremely and oppositely wrong, at many times.


And both Autism and AS are Psychiatric diagnoses only; there's no "biological definitions" of these conditions.

Classic Autism, even if it is still a Psychiatric diagnosis is obviously a real disorder, even a disease perhaps, because its symptoms are very obvious (even obvious to those who know nothing about Autism) and impact greatly functionality in life. It is very obvious to everyone that there's something "wrong" in those people.

But AS/HFA ? Especially those who can work, drive and compute? There's really no biological proof that what they have something wrong. It can be simply a personality/brain variation (and personality might be partly biological after all) which got socially constructed as a disorder because it is a rare variation.

There's no real final proof that HFA and severe autism are the same, caused by the same biological causes (in case HFA turned to be a real biologiacl disorder) - the whole "spectrum" idea is a Psychiatric theory.

I would only pursue a diagnosis when ASD diagnosis becomes a fully medical diagnosis, and stops being a Psychiatric label only.

A good example for this transition is the Rett Syndrome, Rett Syndrome was a Psychiatric diagnosis (so Psychiatrists got this one right somehow) and it was lumped with Autism conditions, it was known also as "Autism for girls" - but they found out its real biological cause, they know now the exact mutated gene and its location in the DNA.
For that reason, it was removed from DSM 5 and it is now a real medical diagnosis in medical books studied in real med schools, and it can detected by a genetic testing.

People here should understand that a Medical diagnosis is by faaaaar strongly more credible than any Psychiatric diagnosis.

That's why I am not interested to pursue for a diagnosis, ASD is still a Psychiatric diagnosis, and since there's no genetic/blood testing to make sure whether one has it or not.

If one day they find an accurate genetic/blood testing for it, like the case of Rett Syndrome, then I would certain sprint to nearest lab for it, otherwise, not much interested.


I'll just go through some points, in the order you wrote them:

1. About the social life of autistics in different cultures, what I meant was being exposed to social learning during the formative years, i.e. childhood and teenage years. For example, in another thread you mentioned something about being able to chat with people in the gym in the past. That is not socially acceptable where I live, and it never has been, because here shyness is close to godliness :wink: I have mentioned before that I live with two very different cultures, and the level of social interaction that goes on in one of them boggles the mind, whereas in the other one children have a lot fewer opportunities to practice social skills - and parents teach them less actively as well.

What I meant was the opportunity to build a library of social interactions before adulthood; you certainly seem better at ascertaining motivation than a lot of WP members, but the question is: is that because of less autism or because of more life experience?

I wasn't certain what you meant about the Czech Republic, but my impression is that there is a clear split between Eastern and Western Europe when it comes to socialising, with the East being a lot more gregarious. The Czech Republic has a reputation for xenophobia, though.

2. I believe that the fuzzy end of the spectrum is extremely fuzzy, in that there is no clear cutoff point, which means that individual life experiences will play a large part in determining whether people who are mild are debilitated by autistic symptoms or not. Depression will make sensitivities and executive functioning worse, not to mention the ability to communicate. Ditto for physical illness.

When I started seeing a psychologist and mentioned possible autism, she told me that a lot of people with Asperger's got cured as adults. I thought something along the lines of 'When pigs fly', but I kept it to myself and checked out the article she referred to, here: http://forskning.no/psykiske-lidelser/2 ... rs-syndrom - try Google translate.

The point of the study was to follow up on 50 boys who'd ben diagnosed with Asperger's syndrome back in the day, and who were now in their thirties. Most of them were doing much better than as children, and about 20 % were described as 'almost symptom-free'. What they mean by 'symptoms" I don't know, but I don't see doing well in your early thirties, in most cases before having kids, as conclusive evidence that a person will never again be troubled by autism.

There is a huge problem with a lot of thinking about autism, and that is people's predilection for viewing both autism and life situations as static, when people can and do live long lives with a variety of phases and challenges. Who is studying the life situations of autistic pensioners? That's what I'd like to know.

3. I agree with you about the general crappiness of the diagnostic criteria. I get it that the researchers are doing their best, but there is too much room for personal interpretation. Ask some of the people on WP who have a myriad of diagnoses - bipolars who peculiarly never had a manic episode, borderlines who can't lie convincingly, ADD'ers who are addicted to routines and stim like there's no tomorrow.....

Sometimes people say, well, if you have no problems....but who has no problems in life? The question is how bad your problems are, and what it will take to fix them.

I needed to know about autism, to make changes in how I approach problems and activities. I think I am mild, maybe I'll never get a diagnosis - but to get around executive functioning problems I have to know that they exist, and develop workarounds, otherwise I'll never achieve anything.

And I am so tired of people being angry with me. It's really exhausting. I grind my teeth and tell myself they don't know how hard it is, but sometimes it really gets to me, when I am trying so hard, and I've always tried hard.


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29 Dec 2016, 9:46 pm

ASPartOfMe wrote:
I will quess based on your age posted your dad grew up when I did or a bit earlier. It was considered unmanly to look into oneself and thus seeing a proffessional was stigmatized. Only those truly "crazy" or the idle rich saw "shrinks". While it was recognized everybody had difficulties you were expected to figure it out, deal with them, and not burden others with your "personal business".


Yep, that's about it. Dad was born a few short years after the end of WWII. His advice to me when I've had mental health problems has always been "just get on with it". I'm sure he meant it well, but I recently realised it's awful advice. To "get on with it" I've tried to pretend to be normal, at great cost to myself. He is actively hostile to the mental health professions and especially to antidepressant or anti-anxiety medication. I made the mistake of telling him I was taking medication for anxiety once and let's just say his response was such that I will never make that mistake again. In his case I wonder if it's not only a matter of being part of the stoic older generations, but of being allergic to the idea that one of his children might have a mental health problem.

To bring it back to the original topic: children rely on their parents and other adults around them to pick up on their difficulties. There are many reasons why that might not happen.



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30 Dec 2016, 3:22 am

Lockheart wrote:
ASPartOfMe wrote:
I will quess based on your age posted your dad grew up when I did or a bit earlier. It was considered unmanly to look into oneself and thus seeing a proffessional was stigmatized. Only those truly "crazy" or the idle rich saw "shrinks". While it was recognized everybody had difficulties you were expected to figure it out, deal with them, and not burden others with your "personal business".


Yep, that's about it. Dad was born a few short years after the end of WWII. His advice to me when I've had mental health problems has always been "just get on with it". I'm sure he meant it well, but I recently realised it's awful advice. To "get on with it" I've tried to pretend to be normal, at great cost to myself. He is actively hostile to the mental health professions and especially to antidepressant or anti-anxiety medication. I made the mistake of telling him I was taking medication for anxiety once and let's just say his response was such that I will never make that mistake again. In his case I wonder if it's not only a matter of being part of the stoic older generations, but of being allergic to the idea that one of his children might have a mental health problem.

To bring it back to the original topic: children rely on their parents and other adults around them to pick up on their difficulties. There are many reasons why that might not happen.


I remember my dad having an absolute fit when they were helping me move and I was very disorganized. He told me I was taking it "too lightly". Then at a later time he told me that all through his working years, he would spend a couple of hours lying awake in bed every evening, mentally going through all his tasks for the following work day. He said he thought that was the reason he always did well at work, but that it had taken a toll on his health, and that he proably shouldn't have done it.

Btw, his working years all happened when things were slower than today. I doubt he'd have the energy to repeat the prodcedure in today's workplace.


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30 Dec 2016, 3:50 am

underwater wrote:
Lockheart wrote:
ASPartOfMe wrote:
I will quess based on your age posted your dad grew up when I did or a bit earlier. It was considered unmanly to look into oneself and thus seeing a proffessional was stigmatized. Only those truly "crazy" or the idle rich saw "shrinks". While it was recognized everybody had difficulties you were expected to figure it out, deal with them, and not burden others with your "personal business".


Yep, that's about it. Dad was born a few short years after the end of WWII. His advice to me when I've had mental health problems has always been "just get on with it". I'm sure he meant it well, but I recently realised it's awful advice. To "get on with it" I've tried to pretend to be normal, at great cost to myself. He is actively hostile to the mental health professions and especially to antidepressant or anti-anxiety medication. I made the mistake of telling him I was taking medication for anxiety once and let's just say his response was such that I will never make that mistake again. In his case I wonder if it's not only a matter of being part of the stoic older generations, but of being allergic to the idea that one of his children might have a mental health problem.

To bring it back to the original topic: children rely on their parents and other adults around them to pick up on their difficulties. There are many reasons why that might not happen.


I remember my dad having an absolute fit when they were helping me move and I was very disorganized. He told me I was taking it "too lightly". Then at a later time he told me that all through his working years, he would spend a couple of hours lying awake in bed every evening, mentally going through all his tasks for the following work day. He said he thought that was the reason he always did well at work, but that it had taken a toll on his health, and that he proably shouldn't have done it.

Btw, his working years all happened when things were slower than today. I doubt he'd have the energy to repeat the prodcedure in today's workplace.



I have moved house several times and I still can't properly pack everything. My mom said I just throw everything together. Not literally. I will take stuff from a drawer and put it all in one box despite movies being in one box and video games being in their own and CDs being in their own and they are neatly stacked in there and books are all together in one box also all stacked together so how is this not organized? So at least I know my ex wasn't being all narcissist when he told me I was so disorganized with my packing and I just toss it all together but yet he said I couldn't have AS because aspies are organized. :roll: But on this forum I often see posts about being disorganized written by aspies here to pretty ironic eh?


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30 Dec 2016, 11:15 am

SocOfAutism wrote:
Eloa wrote:
kraftiekortie wrote:
The previous poster is only comparing autism to red hair because they both are about as common as each other, according to the poster.

Hi, kraftiekortie, I do not understand comparing red hair to autism, it does not make sense to me. And maybe both is common but still I do not understand, because blond hair is common as well or brown or dark hair but the impact of having autism or a hair-colour to me is not comparable, because I do have reddish-brown hair but it does not cause any trouble in every day functioning.
I really do not understand.
Thank you for answering me, kraftiekortie!


Yeah, sorry, I guess that can seem flippant if you're not familiar with my outlook on autism. I first see autistic people as simply different and things like sensitivity as a problem with being in a world not suited for autistics, not an innate problem with autistics themselves.

It may not seem apparent from my picture, where my hair looks kind of brown, but I actually have red hair myself. This is part of why I use this convenient statistic. And yes, I meant it in the way that Kraftie explained. Just that red haired people are a group of people and autistics are another group of people and the two groups happen to be about the same size. Thanks Kraftie. :)

FYI- the rate of gay men and lesbian women is also roughly the same size group as red haired people and of autistic people (this rate is something like 1.5%-1.65% I believe, but I can look it up). As a comparison, black people in the US are something like 12% and transgender people are something like 0.2%.

Hi, SocOfAutism, thank you for explaining.
Then (by the information you are giving) what is your outlook on those on the spectrum who have trouble with taking care for basic needs, stuff like providing regular meals for themselves, because it takes a lot of mental energy to coordinate the steps that must be understaken.
I mean in regard to "being in a world not suited for autistics", because I experience this problem as to be innate where my brain just turns "white" in the inside, like no access to information, like a brain-freeze.
How would a world suited for autistics would be like?


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30 Dec 2016, 11:23 am

The world is really not suited for autistic people.

That's why it's essential that at least some autistic people have support workers to help them.

Having these support workers could very well make an autistic person a more useful member of society--because then, with this support, the person can concentrate on his/her special interest.

This pursuit of the autistic person's special interest could very well benefit others. Many autistic people, some of whom had formal or informal support, have invented useful devices, or have promulgated useful ideas--useful for the Greater Society.



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30 Dec 2016, 11:32 am

SocOfAutism wrote:
Eloa wrote:
kraftiekortie wrote:
The previous poster is only comparing autism to red hair because they both are about as common as each other, according to the poster.

Hi, kraftiekortie, I do not understand comparing red hair to autism, it does not make sense to me. And maybe both is common but still I do not understand, because blond hair is common as well or brown or dark hair but the impact of having autism or a hair-colour to me is not comparable, because I do have reddish-brown hair but it does not cause any trouble in every day functioning.
I really do not understand.
Thank you for answering me, kraftiekortie!


Yeah, sorry, I guess that can seem flippant if you're not familiar with my outlook on autism. I first see autistic people as simply different and things like sensitivity as a problem with being in a world not suited for autistics, not an innate problem with autistics themselves.

It may not seem apparent from my picture, where my hair looks kind of brown, but I actually have red hair myself. This is part of why I use this convenient statistic. And yes, I meant it in the way that Kraftie explained. Just that red haired people are a group of people and autistics are another group of people and the two groups happen to be about the same size. Thanks Kraftie. :)

FYI- the rate of gay men and lesbian women is also roughly the same size group as red haired people and of autistic people (this rate is something like 1.5%-1.65% I believe, but I can look it up). As a comparison, black people in the US are something like 12% and transgender people are something like 0.2%.


Not exactly.

The rate of homosexuality is much bigger than that of autism. Gays are supposed four to five percent of the population, and bisexuals another five percent. It used to be thought to be even higher than that (like ten percent).

Autistics are only supposed to be 1.5 percent of the population.

you're right that Blacks are 12 percent of the US population.

Jews are about two percent. So Jews are kinda comparable to autistics in their proportion of the US population, but Jews very a lot in number regionally even within the US. I doubt that autistics vary in proportion to the local population that much regionally.



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30 Dec 2016, 12:48 pm

kraftiekortie wrote:
The world is really not suited for autistic people.

That's why it's essential that at least some autistic people have support workers to help them.

Having these support workers could very well make an autistic person a more useful member of society--because then, with this support, the person can concentrate on his/her special interest.

This pursuit of the autistic person's special interest could very well benefit others. Many autistic people, some of whom had formal or informal support, have invented useful devices, or have promulgated useful ideas--useful for the Greater Society.

Thank you for replying.
I was not sure how a world suited for autistics was meant, if it would mean it would exclude non-autistic people as I have read on WP several times, it would be the ideal society for autistics, and which is an idea I strongly dislike and does not make sense to me.


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30 Dec 2016, 1:00 pm

underwater wrote:
Lockheart wrote:
ASPartOfMe wrote:
I will quess based on your age posted your dad grew up when I did or a bit earlier. It was considered unmanly to look into oneself and thus seeing a proffessional was stigmatized. Only those truly "crazy" or the idle rich saw "shrinks". While it was recognized everybody had difficulties you were expected to figure it out, deal with them, and not burden others with your "personal business".


Yep, that's about it. Dad was born a few short years after the end of WWII. His advice to me when I've had mental health problems has always been "just get on with it". I'm sure he meant it well, but I recently realised it's awful advice. To "get on with it" I've tried to pretend to be normal, at great cost to myself. He is actively hostile to the mental health professions and especially to antidepressant or anti-anxiety medication. I made the mistake of telling him I was taking medication for anxiety once and let's just say his response was such that I will never make that mistake again. In his case I wonder if it's not only a matter of being part of the stoic older generations, but of being allergic to the idea that one of his children might have a mental health problem.

To bring it back to the original topic: children rely on their parents and other adults around them to pick up on their difficulties. There are many reasons why that might not happen.


I remember my dad having an absolute fit when they were helping me move and I was very disorganized. He told me I was taking it "too lightly". Then at a later time he told me that all through his working years, he would spend a couple of hours lying awake in bed every evening, mentally going through all his tasks for the following work day. He said he thought that was the reason he always did well at work, but that it had taken a toll on his health, and that he proably shouldn't have done it.

Btw, his working years all happened when things were slower than today. I doubt he'd have the energy to repeat the prodcedure in today's workplace.


Being of that older generation (born 1957) I think "getting on with it" is ok to a point. But I was "getting on with it" with wrong and incomplete information.

It is not only that work is faster today there is a lot more emphasis on teamwork and networking now. When I entered the labor force the words of wisdom I often got was along the lines of "be professional, the office is not a social club, you and your boss and your co workers do not have to like each other". I did well in that atmosphere. When it started to change in the 90's I flailed and eventually crashed.


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30 Dec 2016, 1:02 pm

When I think of the famous artists, composers, and architects, who are supposed to be the best of all mankind, they have mentally broken down a plant, into it's simplest parts, to create a binding resin or resonant box, a complicated stone was made into a mineral pigment, taken from the soil ,and made to last for thousands of years. There are mathematical rules to music, painting, and sculpture. The world is measurable and can be broken down, into predictable rules and systems.

There is also structure to society and routines to relationships.

Everyone is afraid of spontaneity, but how is that measured.

Do you have a goal in mind, an agenda, or some personal standards. Is there a sense of taste.

Remake the world, in your own image, or conserve something, because you like it. It doesn't have to own you.



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30 Dec 2016, 1:37 pm

EzraS wrote:
If nobody can tell if someone is autistic, like people ask if they should tell their, coworkers, friends, siblings and parents that they are autistic, how can they have autism?


You ever talk about symptoms with NTs?

"Yeah... I do that sometimes."

"I feel like that about [x] or [y]"

"Thats a personality trait, I know a lot of people who are [z] and not autistic"

They AREN'T WRONG... but from outside, like so many other things it is often hard to see the forrest for the trees.

Not to many things that affect us can't come from somewhere else in someone who isn't on the spectrum.

Add to this the idea that family, in particular, are VERY close to the subject, they get a bit blinded (my sister insists I don't have ADD, having witnessed every possible symptom dozens of times in our childhood)...

..and PARENTS even more so because they feel responsible... My son's ASD doesn't bother me so much because I don't have a strongly negative stigma of my own ASD... but if he ends up with my ADD... I'll likely deny or ignore those symptoms for years rather than face the likelihood that I gave that horrible curse to another human.