Page 1 of 2 [ 23 posts ]  Go to page 1, 2  Next

StarTrekker
Veteran
Veteran

User avatar

Joined: 22 Apr 2012
Age: 31
Gender: Female
Posts: 3,088
Location: Starship Voyager, somewhere in the Delta quadrant

02 Feb 2019, 12:20 am

I know there are some self-diagnosed individuals in the autism community who have expressed that they don't want to get a professional diagnosis from a doctor, and I'm curious as to why that is. In order to qualify for an autism diagnosis, one has to have impairments that significantly impact daily functioning, so how do you get by without supports, and what is it that makes life without those supports seem more appealing than life with them? I'm just curious.


_________________
"Survival is insufficient" - Seven of Nine
Diagnosed with ASD level 1 on the 10th of April, 2014
Rediagnosed with ASD level 2 on the 4th of May, 2019
Thanks to Olympiadis for my fantastic avatar!


traven
Veteran
Veteran

Joined: 30 Sep 2013
Gender: Female
Posts: 14,236

02 Feb 2019, 3:03 am

Quote:
In order to qualify for an autism diagnosis, one has to have impairments that significantly impact daily functioning, so how do you get by without supports, and what is it that makes life without those supports seem more appealing than life with them?


- if no "impairments" it's not diagnosable ?

Quote:
I know there are some self-diagnosed individuals in the autism community who have expressed that they don't want to get a professional diagnosis from a doctor, and I'm curious as to why that is.


- freedom, self destination, kept myself out of official 'trouble' until now,
- and what have doctors ever done but dismiss everything i went to see them for,
+ and in another country with 'nt/ language barrier' and no income as 'money barrier'

but being in a 'hostile' world isn't an illness, it's life, it's philosophy, it's existential.

when i worked in a factory the woman next to me couldn't keep up so i put some in for her, but noticebly she slowed down more expecting that to work out, people are like that most often, also they hate you for helping!

it takes years to find out most people thrive on other things (than you expected)
it takes years to work out others don't use their senses (at all) but rather rely on "what is said"
but you can't be what you are not
(watchout with all the advice out there, it's for the "senseless-ones" to learn what's the hip thing to pretend, all talk and the value of talk only, new age is the worse imho)


doctors, what do they know?
when they have a hammer everyone needs hammering, when the med-rep has bullied them into lucratif presciptions plans, everyone gets to get that presciption, even if you would get worse from that, what usually happens.
the doctor thinks the lying stealing psychopatic neighbour is an exemplairy example of decency and serviability!!
but i shouldn't say a word



Amity
Veteran
Veteran

User avatar

Joined: 22 Mar 2014
Gender: Female
Posts: 7,714
Location: Meandering

02 Feb 2019, 3:49 am

Diagnosed adults can purchase the exact same supports as undiagnosed adults...
I have no supports to help with my daily functioning, doesn't mean that I don't need them.

Instead Ive done what ASD'rs have been doing since the beginning of man, right up until the last couple of decades... developed work arounds to reduce the pressure.



hurtloam
Veteran
Veteran

User avatar

Joined: 27 Mar 2011
Gender: Female
Posts: 8,747
Location: Eyjafjallajökull

02 Feb 2019, 4:19 am

What supports would help me exactly? Who's going to make me less odd? Who's going to make it easier for me to make friends or get a boyfriend? Who's going to make conversation with NTs easier for me?

When you're in your 30s and have a job, no-one cares that you have to live alone because you can't cope with living with someone else. No one cares that I can't manage to work and keep my house tidy (apart from my Mum). No one cares that men find me too odd to date.

A diagnosed is just a label.



StarTrekker
Veteran
Veteran

User avatar

Joined: 22 Apr 2012
Age: 31
Gender: Female
Posts: 3,088
Location: Starship Voyager, somewhere in the Delta quadrant

02 Feb 2019, 4:29 am

traven wrote:
- if no "impairments" it's not diagnosable ?


That is correct. I am reading directly from my copy of the DSM 5, page 50, as I write this:

"D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning."

The entire purpose of having diagnoses is so that doctors have a shorthand way of describing clusters of symptoms that occur together over and over again, in order to expedite treatment. If you don't need treatment, you don't need a diagnosis, and if you don't need a diagnosis, you don't have the disorder.


_________________
"Survival is insufficient" - Seven of Nine
Diagnosed with ASD level 1 on the 10th of April, 2014
Rediagnosed with ASD level 2 on the 4th of May, 2019
Thanks to Olympiadis for my fantastic avatar!


StarTrekker
Veteran
Veteran

User avatar

Joined: 22 Apr 2012
Age: 31
Gender: Female
Posts: 3,088
Location: Starship Voyager, somewhere in the Delta quadrant

02 Feb 2019, 4:33 am

hurtloam wrote:
What supports would help me exactly? Who's going to make me less odd? Who's going to make it easier for me to make friends or get a boyfriend? Who's going to make conversation with NTs easier for me?

When you're in your 30s and have a job, no-one cares that you have to live alone because you can't cope with living with someone else. No one cares that I can't manage to work and keep my house tidy (apart from my Mum). No one cares that men find me too odd to date.

A diagnosed is just a label.


You could gain access to social skills groups, or support centers that offer assistance with such tasks as cooking, cleaning, going out into the community, etc.


_________________
"Survival is insufficient" - Seven of Nine
Diagnosed with ASD level 1 on the 10th of April, 2014
Rediagnosed with ASD level 2 on the 4th of May, 2019
Thanks to Olympiadis for my fantastic avatar!


hurtloam
Veteran
Veteran

User avatar

Joined: 27 Mar 2011
Gender: Female
Posts: 8,747
Location: Eyjafjallajökull

02 Feb 2019, 4:33 am

Yes, it was my impairments that made my Mum say to me, "I think you might be autistic."

If I had no impairments, she would have just thought I was "normal".



hurtloam
Veteran
Veteran

User avatar

Joined: 27 Mar 2011
Gender: Female
Posts: 8,747
Location: Eyjafjallajökull

02 Feb 2019, 4:36 am

StarTrekker wrote:
hurtloam wrote:
What supports would help me exactly? Who's going to make me less odd? Who's going to make it easier for me to make friends or get a boyfriend? Who's going to make conversation with NTs easier for me?

When you're in your 30s and have a job, no-one cares that you have to live alone because you can't cope with living with someone else. No one cares that I can't manage to work and keep my house tidy (apart from my Mum). No one cares that men find me too odd to date.

A diagnosed is just a label.


You could gain access to social skills groups, or support centers that offer assistance with such tasks as cooking, cleaning, going out into the community, etc.


I think they would be lower functioning than me though. I feel like I have learned a lot the hard way. I'm so much better at dealing with people than I was when I was 20 or 10 or 5.

What I really need is a cleaner and a dishwasher.

I'm ok at cooking. It's a special interest. It's the mess i make if the kitchen whilst cooking thag is the issue :)



StarTrekker
Veteran
Veteran

User avatar

Joined: 22 Apr 2012
Age: 31
Gender: Female
Posts: 3,088
Location: Starship Voyager, somewhere in the Delta quadrant

02 Feb 2019, 4:39 am

Amity wrote:
Diagnosed adults can purchase the exact same supports as undiagnosed adults...
I have no supports to help with my daily functioning, doesn't mean that I don't need them.


What kinds of autism services can you buy without a diagnosis where you are? In my state, my school accommodations, job coach and work accommodations, my SSDI benefits, my in-home support services, my emotional support animal and my healthcare (which pays for my individual therapy, my speech therapy, my medications, and all of the ER and hospital trips I've taken over the past two years as a result of meltdowns) all required a paper diagnosis; without it, I would have nothing.


_________________
"Survival is insufficient" - Seven of Nine
Diagnosed with ASD level 1 on the 10th of April, 2014
Rediagnosed with ASD level 2 on the 4th of May, 2019
Thanks to Olympiadis for my fantastic avatar!


StarTrekker
Veteran
Veteran

User avatar

Joined: 22 Apr 2012
Age: 31
Gender: Female
Posts: 3,088
Location: Starship Voyager, somewhere in the Delta quadrant

02 Feb 2019, 4:47 am

hurtloam wrote:
Yes, it was my impairments that made my Mum say to me, "I think you might be autistic."

If I had no impairments, she would have just thought I was "normal".


That's true, but there is a difference between "impairments" and "clinically significant impairments". The former are an inconvenience, which many people experience (e.g being overweight or short or needing glasses are all "impairments" but they don't prevent you from living a normal life). The latter prevent you from having equal access to opportunities, having basic needs (food, shelter, etc.) met, or otherwise create a quality of life that is measurably worse than those without the impairments.


_________________
"Survival is insufficient" - Seven of Nine
Diagnosed with ASD level 1 on the 10th of April, 2014
Rediagnosed with ASD level 2 on the 4th of May, 2019
Thanks to Olympiadis for my fantastic avatar!


Amity
Veteran
Veteran

User avatar

Joined: 22 Mar 2014
Gender: Female
Posts: 7,714
Location: Meandering

02 Feb 2019, 5:13 am

StarTrekker wrote:
Amity wrote:
Diagnosed adults can purchase the exact same supports as undiagnosed adults...
I have no supports to help with my daily functioning, doesn't mean that I don't need them.


What kinds of autism services can you buy without a diagnosis where you are? In my state, my school accommodations, job coach and work accommodations, my SSDI benefits, my in-home support services, my emotional support animal and my healthcare (which pays for my individual therapy, my speech therapy, my medications, and all of the ER and hospital trips I've taken over the past two years as a result of meltdowns) all required a paper diagnosis; without it, I would have nothing.

There aren't autism services, private healthcare means that if I have the cash I can purchase whatever I choose.
Like I said not much has changed since the beginning of mankind.



Joe90
Veteran
Veteran

User avatar

Joined: 23 Feb 2010
Gender: Female
Posts: 26,492
Location: UK

02 Feb 2019, 7:22 am

Well, because if Nazis ever decided to start throwing autistics into torture camps, at least they can't throw you in if you don't have autism diagnosis on your medical records. That's the only reason why I wish I never had a diagnosis.


_________________
Female


BTDT
Veteran
Veteran

User avatar

Joined: 26 Jul 2010
Age: 61
Gender: Female
Posts: 7,442

02 Feb 2019, 8:51 am

Roses for Autism doesn't need an official diagnoses to provide job training. They know enough about autism to decide whether they can help you or not!

Where I live many services go away when you become an adult. While I've never had them, I asked someone on mental health disability about this, and yes, they go away.

When I had a partner I found there was an entire network of healthcare professionals who could help you that worked outside the insurance network.



leahbear
Sea Gull
Sea Gull

Joined: 2 Dec 2017
Age: 50
Gender: Female
Posts: 246
Location: West coast of Canada

02 Feb 2019, 6:07 pm

I would love to get a diagnosis but I don’t have the money. In my province once you’re an adult you have to pay for a private assessment which costs thousands of dollars and doesn’t happen anywhere close to where I live. I have impairments that either have me unemployed or underemployed and they seem to be getting worse as I get older so I’m not sure how I’m supposed to ever get that money together. How do I get by? I have a very understanding boyfriend and we live cheaply. What would I do if I didn’t have my boyfriend? I have no idea. I don’t think a diagnosis would mean I would get free therapy or anything else that kids get but would maybe qualify me for some type of disabilty assisstance in case I couldn’t work. I’m not really sure though. So I read books to help myself and lurk around here enjoying the feeling of similarity but I try not to post much because I’m super sensitive to feeling like an outsider.



StarTrekker
Veteran
Veteran

User avatar

Joined: 22 Apr 2012
Age: 31
Gender: Female
Posts: 3,088
Location: Starship Voyager, somewhere in the Delta quadrant

03 Feb 2019, 1:09 am

Amity wrote:
StarTrekker wrote:
Amity wrote:
Diagnosed adults can purchase the exact same supports as undiagnosed adults...
I have no supports to help with my daily functioning, doesn't mean that I don't need them.


What kinds of autism services can you buy without a diagnosis where you are? In my state, my school accommodations, job coach and work accommodations, my SSDI benefits, my in-home support services, my emotional support animal and my healthcare (which pays for my individual therapy, my speech therapy, my medications, and all of the ER and hospital trips I've taken over the past two years as a result of meltdowns) all required a paper diagnosis; without it, I would have nothing.

There aren't autism services, private healthcare means that if I have the cash I can purchase whatever I choose.
Like I said not much has changed since the beginning of mankind.


I'm not sure I understand, are you saying there are no autism services at all in your area, so you would have nothing to access even with a diagnosis?


_________________
"Survival is insufficient" - Seven of Nine
Diagnosed with ASD level 1 on the 10th of April, 2014
Rediagnosed with ASD level 2 on the 4th of May, 2019
Thanks to Olympiadis for my fantastic avatar!


Amity
Veteran
Veteran

User avatar

Joined: 22 Mar 2014
Gender: Female
Posts: 7,714
Location: Meandering

03 Feb 2019, 7:03 am

StarTrekker wrote:
Amity wrote:
StarTrekker wrote:
Amity wrote:
Diagnosed adults can purchase the exact same supports as undiagnosed adults...
I have no supports to help with my daily functioning, doesn't mean that I don't need them.


What kinds of autism services can you buy without a diagnosis where you are? In my state, my school accommodations, job coach and work accommodations, my SSDI benefits, my in-home support services, my emotional support animal and my healthcare (which pays for my individual therapy, my speech therapy, my medications, and all of the ER and hospital trips I've taken over the past two years as a result of meltdowns) all required a paper diagnosis; without it, I would have nothing.

There aren't autism services, private healthcare means that if I have the cash I can purchase whatever I choose.
Like I said not much has changed since the beginning of mankind.


I'm not sure I understand, are you saying there are no autism services at all in your area, so you would have nothing to access even with a diagnosis?


Yes. There are zero state supported adult autism services in my area and the privately funded services tend to be only in urban areas. I traveled to Northern Ireland to be assessed as the options for women in the Republic are abysmal.

However to be fair, adults with profound disabilities are accommodated in residential or day services (some of which have been the source of many scandals in recent years, due to neglect/abuse of vulnerable clients e.g. viewtopic.php?t=272288&hilit=+Abuse).
The Department of Health awards funding to private organisations (after a tender process) to provide limited spaces in supported living for those who do not meet the criteria for a state funded facility.

These organisations provide limited spaces for semi independent living and can if there is funding available provide training and assist their clients to access employment (general disabilities).

It all boils down to money, we (Ireland) lost our financial sovereignty during the IMF years and when we regained it our priorities became more survival based... we were slowly recovering from the crash, but now this infernal Brexit is going to set us back again... I can relate more easily to the experiences of ASD folks in poorer or regressive countries/areas and those of older generations and less so to folks who have had access to autism support services.
It's like different realities.