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carlos55
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18 Jul 2020, 7:55 am

Lilinoe wrote:
At the moment, it is very difficult or impossible for an adult Autist to get help when needed. The solution to that problem, however, isn't IMO making Autism go away, but providing help that enables us to thrive and contribute into society. Often, the biggest problem seems to be that we don't seem "disabled enough" for our need for help to be taken seriously -then when we fail, we get judged and blamed just because it turns out we would really have needed that help we asked for... :roll:


I hear this all the time, but few can provide anything substantial in terms of realistic solutions.


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vermontsavant
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18 Jul 2020, 11:46 am

I have no involvement in autism pride, disability pride or any of the like.


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Whale_Tuune
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18 Jul 2020, 2:12 pm

carlos55 wrote:
Lilinoe wrote:
At the moment, it is very difficult or impossible for an adult Autist to get help when needed. The solution to that problem, however, isn't IMO making Autism go away, but providing help that enables us to thrive and contribute into society. Often, the biggest problem seems to be that we don't seem "disabled enough" for our need for help to be taken seriously -then when we fail, we get judged and blamed just because it turns out we would really have needed that help we asked for... :roll:


I hear this all the time, but few can provide anything substantial in terms of realistic solutions.


I've had this experience, too. @lillinoe, I'm interested in hearing concrete solutions-- it would actually be really nice to see what people have in mind when they talk about these things.

In practice, I can't think of many challenges people who are NT have on a regular basis that few ASD individuals have. I also don't know how we would "accommodate" things like crossing social boundaries, being nonverbally misunderstood, not being able to have a reciprocal conversation, and the like.


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S.key90
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18 Jul 2020, 5:50 pm

I really love everything you said OP. I agree with all of your points. I feel this is an important topic. I am so glad the conversation around autism is moving to one of ACCEPTANCE rather than awareness. Pride is something personal to the individual. I can't say I have pride just for being born this way. I used to feel inferior though and that is not healthy either. The scariest thing I see is the type of hate and unacceptance the origional founders of Autism Speaks display. Awareness didn't have to include getting OUR input as people with autism. ACCEPTANCE includes us. Some of the radicalness on the extreme end of the pride movement seems like emotional reactive backlash against the bigotry and hate coming from eugenicists. The world needs all kinds of people. I'm not necessarily proud, but I am glad I'm who I am.



S.key90
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18 Jul 2020, 5:55 pm

Whale_Tuune wrote:
The issue is that ASD and neurodiversity is trendy in theory, but in practice the NT who is liable to spout that politically correct stuff one day is just as likely to turn around and be scornful or judgmental of the weird kid in their class or the creepy coworker the next day.


I've seen it with my own eyes many times. Such a damn shame! :roll: I could even tell a story about when this happened to me.



Whale_Tuune
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18 Jul 2020, 7:01 pm

Sure. I have stories too.


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cyberdad
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18 Jul 2020, 8:22 pm

carlos55 wrote:
Another young man I know of with severe symptoms, his mother says he never leaves his room. Since leaving special school his routine has gone, many learned living skills have since perished, he has his meals brought to him.


This is actually a real situation. thanks for bringing this up.



Lilinoe
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18 Jul 2020, 9:37 pm

@carlos55, well I have personal experience about this happening. Many long stories short, I've had to fight for years for every scrap of help I've received. Autism diagnosis is about zero use when it comes to qualifying for support services that non-autist people with issues of comparable severity get as a matter-of-fact. Turns out, that one's problem does not have to be objectively big to really screw your life up if it happens to be a problem with communicating/social situation or sensory issues...

@Whale_Tuune, I'm actually *trying* to make myself a job out of solving these issues. Naturally, I struggle with this too because issue #1, lack of autism awareness: we are not seen or understood or helped because majority of people, even experts, are unaware that our kind exists. They have never even thought that issues we struggle with, could be problems to anyone, much less to a portion of population measurable in full %s. That's a huge reason why stupid norms and practices exist, such as the idea that the ability to make eye contact is a great measuring stick for a person's trustworthiness, honesty or good manners. If NT's were aware how difficult and uncomfortable eye contact is to many of us, I think they'd be more flexible about it. But they have no idea, and we get to suffer for it.

Second thing is, of course, concrete lack of support systems Autists have access to. While just about everyone of us feels that we fight our battles alone, truth is that our struggles are not unique but issues common to many people on the spectrum. Same problems that feel gigantic from an individual's point of view are not that huge when looked from systemic point of view. They could be changed fairly easily -at least MUCH more easily than we can change how our brains are wired.
For instance, we should have access to neuropsychiatric coaching as adults. We should have help with getting employed because right now the hoops we have to jump through in order to get work seem sometimes designed to weed out Autists. Many would need a more extensive social security network provided by society (including safe places to connect with safe people) because of inability to create our own support networks like NTs. We are even more unlikely than most to have support from family because our NT relatives are as clueless as everyone else, or in case they are Aspies, because they still struggle with similar issues themselves...
Oh, and let's not forget that when we have psychiatric problems, we should get treated by people who understand Autism and how it affects us, and what kind of solutions work for us instead of making things worse...

But yeah, I for one, am personally invested in figuring out solutions. Wish me luck...



Whale_Tuune
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19 Jul 2020, 9:09 am

I agree that support systems (ie therapy, social skills training, support networks for those of us who struggle with loneliness) is awful.


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JustFoundHere
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30 Aug 2020, 6:16 pm

I quietly side with acceptance.

The PBS network must create excellent stories on AS/HFA - hence covering such issues as acceptance, and pride.

Any specific recommendations for previous (or upcoming) PBS shows?