I wish the autism spectrum wasn't so massively broad

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Joe90
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22 Dec 2022, 8:02 am

The autism spectrum is becoming wider and wider each year, sucking in other neurological disorders and stealing all symptoms from all other disorders. I wouldn't be surprised if in 20 years time everyone will be on the spectrum. :roll:

Anyway, I just wish autism was only diagnosed to people with speech delays and obvious social impairment, where they're non-verbal or if they're not non-verbal they only have limited interaction (like echolalia).
I feel there should be a separate label for children who are social and had no speech delays and are just a bit socially awkward but not socially impaired and are interested in their peers, but just display some autism-like symptoms such as sensitivity to loud noises.

Most other neurological disorders share autism symptoms but aren't an ASD, such as depression, ADHD and Fragile-X syndrome. People with FSX can be socially awkward and have sensory issues even if they're not on the spectrum too. So why can't what Asperger's syndrome used to be, be separate from autism too?

And now that functioning labels don't exist any more because of people saying they're low-functioning one day and the next day they're high-functioning, it makes it even worse, as autism is still thought of as "socially impaired and need 24-hour support". That's why I keep getting pestered by the NHS begging me to have a 4th covid vaccine even though I'm under 50 and I don't have any physical health conditions that makes me vulnerable. They just see sh***y ASD on my stupid medical records and think "ah, she's autistic, let's just assume she is too socially impaired to understand about covid and that she lives in a residential care home and she is unable to express her symptoms if she gets covid". :roll:

Why can't autism just mean what it's originally supposed to mean instead of "a massive range of behaviours that differ from person to person so immensely that highly social/popular children are being diagnosed with autism because they're depressed or shy and you can't doubt on that because every person with autism is different"?

Wish I had better words to explain all that but my tiny brain can only think of boring, simple words, so just try and understand it from my standpoint.


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Nades
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23 Dec 2022, 5:55 am

Being a spectrum, an attempt needs to be made to put autistics in their appropriate place on the spectrum. Unfortunately autism is seen very negatively by society. They currently only have three levels of autism.

Google image "autism" and nothing but kids show up with even the occasional pic of kids with downs syndrome.

Autism and how autisitcs are viewed is long overdue a good cleanup. It's disgusting how society sees us. Google images never lie. Autism is a "child's" disorder and being treated like trash as a result is the norm.

We're always seen as incompetent simpletons despite plenty of autisitcs grossly surpassing many NT's with their level of capabilities.



ThisTimelessMoment
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24 Dec 2022, 2:37 am

This issue is one of classification. It is the human intelligence wanting (and needing) to put things into classification boxes so we can form an understanding of reality. The boxes are both very useful, and also totally meaningless. Nothing in nature is so simple that it can be easily boxed with all others like itself. There is always messiness at the boundaries and outliers that just don't fit.

The happier I get in my own skin, the less I care about what any other human thinks of me or what boxes they want to assign to me.

My view is that, when one looks really deeply, there is no way to compare one human to another. Not in any domain or on any level. It is a problem of multiple dimensions of being on which we each fall somewhere. The human cannot exist without all of their dimensions of being and so they are infinitely complex. It's like trying to compare one universe to another. It's just meaningless.
So I am getting looser with my need to define these things.
I hope that makes some kind of sense. I'm not really sure of the words to explain this yet.


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24 Dec 2022, 4:58 am

I agree with you Joe. I wish I could just say 'my daughter and I have autism' and people would say 'ah yes, you need help with A, B and C.' And that's that.

I suppose it's because autism isn't visible. When people meet someone with Down Syndrome for example, they know *immediately* that the person will need help with certain things.

Although, my friend has a 24 year old son with severe autism, he barely speaks and doesn't understand dangers like crossing roads. So my friend always holds his son's hand when they go out anywhere. He said the sheer number of people who've shouted homophobic abuse at them or even commented 'those men must be gay.' It is obvious that his son is disabled and his dad is caring for him, but people insist on misinterpreting it and being prejudiced :roll:


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KitLily
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24 Dec 2022, 5:00 am

ThisTimelessMoment wrote:
This issue is one of classification. It is the human intelligence wanting (and needing) to put things into classification boxes so we can form an understanding of reality......


I agree with your whole comment there! But didn't quote it to cut down on space.


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cyberdad
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24 Dec 2022, 5:14 am

First you said this...

Joe90 wrote:
The autism spectrum is becoming wider and wider each year, sucking in other neurological disorders and stealing all symptoms from all other disorders. I wouldn't be surprised if in 20 years time everyone will be on the spectrum.
.


Then you said this...
Joe90 wrote:
Anyway, I just wish autism was only diagnosed to people with speech delays and obvious social impairment, where they're non-verbal or if they're not non-verbal they only have limited interaction (like echolalia). .


So I think what you are trying to say is you wish that high functioning folk get their old label back. But my understanding is that almost all of our regular posters on WP were diagnosed pre-2013 so had a Aspergers diagnosis. This means you can just tell people you are an Aspie. I know of older males who just use the Aspie label.



Joe90
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24 Dec 2022, 5:48 am

cyberdad wrote:
First you said this...
Joe90 wrote:
The autism spectrum is becoming wider and wider each year, sucking in other neurological disorders and stealing all symptoms from all other disorders. I wouldn't be surprised if in 20 years time everyone will be on the spectrum.
.


Then you said this...
Joe90 wrote:
Anyway, I just wish autism was only diagnosed to people with speech delays and obvious social impairment, where they're non-verbal or if they're not non-verbal they only have limited interaction (like echolalia). .


So I think what you are trying to say is you wish that high functioning folk get their old label back. But my understanding is that almost all of our regular posters on WP were diagnosed pre-2013 so had a Aspergers diagnosis. This means you can just tell people you are an Aspie. I know of older males who just use the Aspie label.


But Asperger's is still associated with autism. I just wish it were a different condition altogether. If ADHD and FXS share a lot of autism symptoms then why aren't they on the autism spectrum too?
My FSX friend is more socially impaired than me, in terms of dating, having friends and finding a job.


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cyberdad
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24 Dec 2022, 5:56 am

Joe90 wrote:
But Asperger's is still associated with autism. I just wish it were a different condition altogether. If ADHD and FXS share a lot of autism symptoms then why aren't they on the autism spectrum too?
My FSX friend is more socially impaired than me, in terms of dating, having friends and finding a job.


I think it's impossible to seperate them again. But you can use the label Aspergers in preference to autism so at least the NTs in your immediate social circle get used to the fact you don't identify with "classic" autism.



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24 Dec 2022, 10:13 am

The spectrum of autism is so broad that it includes a whole grab bag of symptoms that are associated with each other for various reasons but unlike Fragile-X for example, might have a variety of causes. Although I see clickbait on the web about "autism genes" however I don't know which genes are thought to cause autism and how many who are diagnosed with autism have those genes.

The problem this presents for an "autism website" is that the participants don't all share each others' experiences, so it's not a cohesive community. When WP was founded, if I understand correctly, its mission was to provide support specifically for people with Asperger's Syndrome although those with other forms of autism were welcome. I believe Alex Plank saw himself as an example of a young man with Aspergers' Syndrome who had succeeded in life despite openly having AS, however his example is probably not relevant to most members nowadays. Sadly, I think that has affected the vitality of this site adversely. If the autism spectrum could be subdivided into more specific types of diagnosis, sites targeted to people with those specific diagnoses would probably offer more benefit to their members.


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Nekomonster
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24 Dec 2022, 12:09 pm

I think low and high-functioning are both harmful terms that oversimplify someone's needs. "High-functioning" just means you're easier to deal with for NTs, and Hans Asperger would've kept you alive. People who get assessed as high-functioning are often not given the support they need, and people who are assessed as low-functioning are often infantilized and not given the ability to advocate for themselves.

I would much rather have a broad spectrum than deal with these labels. I'd also like to do away with Aspergers as a label because, once again, Hans Asperger was a Nazi who wanted to kill us.


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24 Dec 2022, 12:17 pm

Nades wrote:
Being a spectrum, an attempt needs to be made to put autistics in their appropriate place on the spectrum. Unfortunately autism is seen very negatively by society. They currently only have three levels of autism.

Google image "autism" and nothing but kids show up with even the occasional pic of kids with downs syndrome.

Autism and how autisitcs are viewed is long overdue a good cleanup. It's disgusting how society sees us. Google images never lie. Autism is a "child's" disorder and being treated like trash as a result is the norm.

We're always seen as incompetent simpletons despite plenty of autisitcs grossly surpassing many NT's with their level of capabilities.


From what I've seen, there are conflicting stereotypes directed at us.

As you pointed out, we get stereotyped as incompetent simpletons, childish, even mentally challenged.

Yet there's also a stereotype that we're freakishly smart.

Come to think of it, just about every demographic has conflicting stereotypes.



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24 Dec 2022, 1:09 pm

I was diagnosed with autism in about 1965, at age 4.

I wasn’t able to be diagnosed with Asperger’s, though I can be diagnosed with Level One autism.

It’s miserable that Level One autism alone won’t get people on “benefits” if that’s what’s needed. There is still strong emphasis on children with autism, but very little on “high-functioning” adults who can severely “fall through the cracks.” There are many who don’t have a way to live comfortably after their parents leave this world.

Many autistic people have talents which companies would find useful. Unfortunately, the “team approach” seems to be the paramount thing which companies emphasize. It has both good and bad points. I feel, at times, that the “team approach” dilutes individual talent. How we became technologically advanced was through individual initiative. Had we kept the “team approach” throughout history, we would still be hunting and gathering.



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24 Dec 2022, 3:22 pm

kraftiekortie wrote:
I was diagnosed with autism in about 1965, at age 4.

I wasn’t able to be diagnosed with Asperger’s, though I can be diagnosed with Level One autism.

It’s miserable that Level One autism alone won’t get people on “benefits” if that’s what’s needed. There is still strong emphasis on children with autism, but very little on “high-functioning” adults who can severely “fall through the cracks.” There are many who don’t have a way to live comfortably after their parents leave this world.

Many autistic people have talents which companies would find useful. Unfortunately, the “team approach” seems to be the paramount thing which companies emphasize. It has both good and bad points. I feel, at times, that the “team approach” dilutes individual talent. How we became technologically advanced was through individual initiative. Had we kept the “team approach” throughout history, we would still be hunting and gathering.


The bolded part is especially relevant in my case. Even though I work full-time, I don't make quite enough to make ends meet. As a result, I partially rely on parents.

I really don't know what I'm going to do when my parents die (I'm dreading it). I'm fully willing to leave this world with them if need be (And no, I'm not suicidal. My parents will probably be around at least another 20 years)

As for the workplace thing, it's true we tend to possess a lot of useful work-related skills. I stand out in my role. However, the reason I don't make a whole lot of money: I'm not able to cope with the stress of a management position (Not necessarily because of being on the spectrum. Mainly because of various mental illnesses of mine). As a result, the glass ceiling is pretty low for me.



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24 Dec 2022, 8:10 pm

Nekomonster wrote:
I think low and high-functioning are both harmful terms that oversimplify someone's needs. "High-functioning" just means you're easier to deal with for NTs, and Hans Asperger would've kept you alive. People who get assessed as high-functioning are often not given the support they need, and people who are assessed as low-functioning are often infantilized and not given the ability to advocate for themselves.

I would much rather have a broad spectrum than deal with these labels. I'd also like to do away with Aspergers as a label because, once again, Hans Asperger was a Nazi who wanted to kill us.


Yeah I agree with the spirit of your post. Back in 2013 a lot of members here on WP shared the OP's anxiety about being classified with people who the OP describes as "lower functioning". No amount of dialectical rationalising is going to reduce that anxiety because a lot of high functioning folk are always concerned what NTs think of them and of course stigma over how they are perceived by labels.

As a parent of a daughter who is moderately functional (intellectually smart but socially struggles) I have tried to get her to join Asperger groups and have seen girls being reluctant to socialise with her for the same reason NT teens are reluctant to social with them. Stigma effects everybody the same.



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24 Dec 2022, 9:54 pm

Skinny Elephant: aren’t you in the UK?

If so, can’t you get some sort of “housing allowance” and tax breaks if you make a relatively low income?

I’m sorry you feel like you would have trouble supporting yourself.

Do your parents rent, or own?



SkinnyElephant
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25 Dec 2022, 10:12 am

kraftiekortie wrote:
Skinny Elephant: aren’t you in the UK?

If so, can’t you get some sort of “housing allowance” and tax breaks if you make a relatively low income?

I’m sorry you feel like you would have trouble supporting yourself.

Do your parents rent, or own?


I'm American.

I'm in my 30s and have never been fully self-sufficient. That's why I have my doubts I will ever be fully self-sufficient.

My parents own.