Why is there so little info for adults with Asperger's?

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Yigeren
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19 Apr 2016, 11:06 pm

I don't know. I guess they feel that we should have figured things out by now.

I had a hard time even finding someone who will diagnose ASD in adults. Most adults were either diagnosed as children, or never diagnosed. The diagnosed people with ASD who are around my age and older are usually all low-functioning, because Asperger's and high-functioning ASD wasn't well known until I was an older child. So people like me either got misdiagnosed, or went undiagnosed because they managed to find a way to act "normal" and become successful.

So while I think there is a need for specialists who will evaluate adults, there apparently aren't enough people out there looking for answers, at least not where I live.

I need to find a social group in my area for people with Asperger's and ASD, but that would mean moving out of my comfort zone. I'd have to leave the house and socialize with strangers. The very thought makes me anxious. I know that there are at least a couple of them in my area. Maybe even more. But I keep putting it off, even though I have no friends and don't know anyone else with ASD.



zkydz
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19 Apr 2016, 11:16 pm

Yigeren wrote:
I need to find a social group in my area for people with Asperger's and ASD, but that would mean moving out of my comfort zone. I'd have to leave the house and socialize with strangers. The very thought makes me anxious.
I know exactly what you mean. I think the only reason I made it tonight is that my Dr.'s team invited me. So, I knew the place, and hoped that someone I knew would be there (someone from the team). My Dr. was there. That was nice. I was familiar with the place. That was nice.

I don't know if I could have done that without those things.


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btbnnyr
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20 Apr 2016, 1:11 am

It is probably because autism has only been a common diagnosis since the late 1990s/early 2000s.
The children who were diagnosed then are just growing up now.
There will be more focus on adults as they become adults.


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Feralucce
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20 Apr 2016, 1:16 am

I have tried to rectify this with my blog series...

http://www.savagelightstudios.com/warpedlens/?page_id=2


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zkydz
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20 Apr 2016, 1:22 am

btbnnyr wrote:
It is probably because autism has only been a common diagnosis since the late 1990s/early 2000s.
The children who were diagnosed then are just growing up now.
There will be more focus on adults as they become adults.
I think I read somewhere that a lot of them are falling through the cracks now and it's as if they turn 18 and it's no longer a problem.

I'm about to go to bed. My brain is fried today. So, if I read that in this thread....well, ooopsss....LOL


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ZenDen
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20 Apr 2016, 9:17 am

One of the problems I see with public opinion and education only being directed toward children, is people just don't have an expectation of problems older autistic people may have.

It's no fun seeing someone completely losing it, especially if they happen to be very large and strong. In our area it seems police have not received proper training and many police, when encountering an older person, who they will later call violent, will often resort to deadly force. This is not an isolated incident and happens in all parts of the country.

Perhaps if the public were educated by the media these terrible incidents would be controlled.

This MUST happen.



SpacedOutAndSmiling
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20 Apr 2016, 10:00 am

It may be because kids are 'cute' and many NT's will see them as 'worth saving'

An autistic adult, who may be big, loud and often upset are just seen as a burden.

For many austistic adults I have met they have had a great deal of trauma and the trauma is now driving behaviour Which makes supporting them even harder. Internalised ableism is a good example of this. I've met many autistic people who won't accept help or support because they don't want to feel different because they still consider being different to be wrong and something negative.

This is part of why identity first acceptance stuff is important. If it's acceptable and understood to be autistic, those who are autistic can access the community more easily. I can access my local town centre because there is an autism hub I can go to when I struggle and know they will understand and help me.


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SocOfAutism
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20 Apr 2016, 10:02 am

There are also lots of autistic people who have never been diagnosed and never WILL be diagnosed because they've never considered that they might be on the spectrum. These people can act as "confederates" against other autistic people, without meaning to.

A confederate in social psychology is a person who appears to be on one side, but they are actually working for the enemy. Let's say Bob has a regular life, as to work, a wife, kids, but has what a lot of us would say are obvious aspie traits. He says and does awkward things, has narrow interests, has particular sensitivities unique to him and ways of doing things that he will not deviate from. Bob has kids with adult autism diagnoses and grandkids with childhood diagnoses. Bob repeatedly says very negative and hurtful things about what it means to be autistic. His kids and grandkids feel terrible about themselves just from hearing the way he speaks about autism. If he knew and accepted that he was also on the spectrum, maybe he would stop being so hurtful and start being more supportive of his family.

It can work the other way, too. People can have great lives and be great people, never consider they are autistic and never get diagnosed, even though they ARE autistic. Without being "out," people can't look up to them as positive role models.



plainjain
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20 Apr 2016, 11:55 am

Feralucce wrote:
I have tried to rectify this with my blog series...

http://www.savagelightstudios.com/warpedlens/?page_id=2


I looked at a lot of your essays on your blog, Feralucce, and I thought they were really excellent. Thank you very much!



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20 Apr 2016, 12:00 pm

SocOfAutism wrote:
There are also lots of autistic people who have never been diagnosed and never WILL be diagnosed because they've never considered that they might be on the spectrum. These people can act as "confederates" against other autistic people, without meaning to.

A confederate in social psychology is a person who appears to be on one side, but they are actually working for the enemy. Let's say Bob has a regular life, as to work, a wife, kids, but has what a lot of us would say are obvious aspie traits. He says and does awkward things, has narrow interests, has particular sensitivities unique to him and ways of doing things that he will not deviate from. Bob has kids with adult autism diagnoses and grandkids with childhood diagnoses. Bob repeatedly says very negative and hurtful things about what it means to be autistic. His kids and grandkids feel terrible about themselves just from hearing the way he speaks about autism. If he knew and accepted that he was also on the spectrum, maybe he would stop being so hurtful and start being more supportive of his family.

It can work the other way, too. People can have great lives and be great people, never consider they are autistic and never get diagnosed, even though they ARE autistic. Without being "out," people can't look up to them as positive role models.


This made me nod lots. Acceptance is powerful!


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I'm a non verbal autistic adult living in the UK. I work for the BBC and I am in the middles of a transition to independent living.

I focus on being autistically happy and I write a website with techniques, reviews and guides. http://spacedoutandsmiling.com


Feralucce
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20 Apr 2016, 12:04 pm

plainjain wrote:
I looked at a lot of your essays on your blog, Feralucce, and I thought they were really excellent. Thank you very much!

Thank you... I do what I can to help


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btbnnyr
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20 Apr 2016, 12:23 pm

zkydz wrote:
btbnnyr wrote:
It is probably because autism has only been a common diagnosis since the late 1990s/early 2000s.
The children who were diagnosed then are just growing up now.
There will be more focus on adults as they become adults.
I think I read somewhere that a lot of them are falling through the cracks now and it's as if they turn 18 and it's no longer a problem.

I'm about to go to bed. My brain is fried today. So, if I read that in this thread....well, ooopsss....LOL


It depends a lot on how their parents raised them, what was their experience in school, their experiences with peers growing up.
If parents and school focused too much on disability and didn't build strengths or teach basic skills, the kids may have major problems as adults, once they age out of the school system.
Alternatively, if parents and school did the right things, the kids may better adapted than previous generations of kids growing up undiagnosed.


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zkydz
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20 Apr 2016, 12:40 pm

btbnnyr wrote:
Alternatively, if parents and school did the right things, the kids may better adapted than previous generations of kids growing up undiagnosed.
I will go with this completely. I have the advantage of being high functioning and can look aback at so many bad decisions just by virtue of not knowing.

The misdiagnoses that had me bandaiding the problem. The skills I did learn have been beneficial for many things. So, they did good on that. But, I am exactly where I was 35 years ago without the benefit of being 20. There are a lot of things that can be excused at 20 that cannot be excused at 30, 40 or worse at my age, 55. I'm just better prepared to be proactive when it gets bad.

So, I'm not a puddle of goo because of the good work those people did. That proves that education does work. They really taught me a lot. And, in its own way, it prepared me to take advantage of the things I have learned now. That previous education is getting out to good use at this crucial junction in my life. But, that was at 39 and two suicide attempts and feeling suicidal when I checked myself in. First attempt was at 19 in the Navy. so, 20 years of hell just to get to that point. And, education made a difference then.

It will make a difference now.

So, you are absolutely correct.


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zkydz
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20 Apr 2016, 12:45 pm

Feralucce wrote:
I have tried to rectify this with my blog series...

http://www.savagelightstudios.com/warpedlens/?page_id=2

OK....
1.) Love the title..."Care and feeding of your Aspie"

2.) still reading all of it, but I like it. Thank you for putting that out there. Very well done.


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Diagnosed April 14, 2016
ASD Level 1 without intellectual impairments.

RAADS-R -- 213.3
FQ -- 18.7
EQ -- 13
Aspie Quiz -- 186 out of 200
AQ: 42
AQ-10: 8.8


Feralucce
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20 Apr 2016, 1:07 pm

zkydz wrote:
1.) Love the title..."Care and feeding of your Aspie"

2.) still reading all of it, but I like it. Thank you for putting that out there. Very well done.


Thank you... we are working on the print edition and hope to have it out by mid summer


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