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Ann2011
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01 Nov 2013, 11:36 am

Where I live the main resource for people with ASD is Autism Ontario. I made contact with them, but was disappointed to find that they function to support parents dealing with autistic children. My presence at the meeting seemed to confuse them to some extent. They were commiserating with each other about the burdens of their special needs children and looking at me like they wished I didn't exist. Like I was a reminder of what their child might become.
There are other groups in the area, but again all geared to children and parents.
To be fair, Autism Ontario did offer an adults meeting, but every time I tried to attend, it was rescheduled and no one knew when. Honestly, I'm not sure I really want to go and meet a bunch of strangers anyway. But, I feel sometimes like society isn't really interested in engaging older autistics. Maybe I should start my own group.
Anyone else feel this way.



pete1061
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01 Nov 2013, 12:19 pm

It's not just a problem where you are. I have trouble finding adult support here in Oregon as well.


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Pondering
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01 Nov 2013, 12:21 pm

Oh yea, I know exactly how this feels. All groups near me that I've seen this year are geared towards kids or kids and their parents. There used to be one that was for teenagers and adults a couple years ago, but it disappeared. I think it may be a good idea to form a group, or contact some locals on the forum to make a group together, but ugh... strangers and lots of them.

An old memory popped up. Searched around for you. Maybe this will help... It's an old Ontario, Canada meet up thread. http://www.wrongplanet.net/postxf195826-0-165.html


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Ann2011
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01 Nov 2013, 12:32 pm

I remember that thread. Ontario is such a big place; it's hard to come up with a location that works for everyone. I think there was one in Toronto, but that's too far for me.

I'm in Kingston if anyone's interested.



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01 Nov 2013, 12:57 pm

OP, I am very sad to say that society ISN'T interested in engaging older autistics. They want us to either have blended in, or shut up and go away. Just look what happens when autistic teenagers try to advocate for themselves-- it's tolerated if they want to write inspiring, Hallmark-y essays for the local paper. It's ruled and regulated away if they try to do it in a board meeting or any place else that might be of consequence.

Autistic CHILDREN-- and preferably severely classically autistic children-- are another matter. They're controllable (or at least, it's easy to put words into their mouths). They're pitiable. They're, dare I say, SAFE. Non-threatening.

The same profoundly affected individual in an adult-sized package?? Or a different individual armed with ideas and opinions of their own, and the ability to articulate them?? WELL. That's another matter, isn't it??

Bloody depressing. They've made the mistake of trying to marginalize a group that could speak for itself before.


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Willard
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01 Nov 2013, 1:06 pm

You'll find the same problem when you need help from any agency that touts itself as representing the "rights of the disabled." If you need a wheelchair ramp built, they know exactly who to sue to make that happen, but if your problem is related to autism, they have no clue what that means or how to go about helping, so rather than find out, they pass the buck from one organization to another until you get frustrated and go away.

Adults with autism don't have the "Aww" factor that children have and groups like Autism Speaks are primarily concerned with pandering to self-absorbed parents and telling the world what a pathetic "burden" autistic kids are to their families, while subtly pushing the notion of eugenics by advocating a "cure," - which is to say, eliminating autistic people from the face of the Earth.



Soccer22
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01 Nov 2013, 1:15 pm

In a documentary I saw about autistic adults graduating high school and what happened afterwards, they called the afterwards part "falling off a cliff". Adults with all different kinds of disabilities are forgotten about. We are considered an annoying nuisance.



b_edward
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01 Nov 2013, 1:29 pm

This is why I'm thinking about studying to become a psychologist or something else in the realm of psychology, therapy, social work, whatever -- anything that lets me help.

That's if they don't bar me for having not-so-good grades in high school. But If I could help people, it would be great. And I mean help people of all ages, not just kids.

That's if I really decide to make a move.

Right now I work in computers. My goal has been to be a programmer; I currently do QA / software testing. But now I don't see myself necessarily becoming a programmer anymore, as software testing allows me to be an advocate for the customer / end-user, in a way I could not do as a programmer.



AardvarkGoodSwimmer
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01 Nov 2013, 3:16 pm

I think one thing to consider and grok deeply is direct provision of services, such as:

In the 1970s, women's rights advocates built shelters so women could escape domestic violence. May have been poorly understood, even controversial back then. Now it's a mainstream issue which receives funding (from large foundations, maybe even some governmental)

In the 1980s, gay rights advocates provided direct services for AIDS patients, including volunteers to visit patients in their homes, stone soup kitchens, clothing re-sale shops, etc.



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01 Nov 2013, 9:01 pm

My region of Virginia is totally deficient in this respect, as well. For CBT I travel an hour away to another town to a therapist whose main experience was with autistic children but who was willing to take me as a client, unlike the therapists in my own town who would only take children. But trying to find assistance in day-to-day life skills is difficult. My family is supportive but don't always understand my needs or limitations. I don't feel that I need the social connections, because I have a few accepting friends through work. But I would like to find someone who can explain basic finances, meal planning, and organizational skills without expecting me to have the executive functioning abilities most other people do. Workshops or one-on-one coaching would be great. Not having those skills results in a lot of judgment from others: "lazy", "irresponsible," etc.

Sometimes I wonder if the lack of services for adults is due to the fact that any adult's life is far more complicated than that of most children, because we have responsibilities that children haven't yet assumed. Of course that makes the psychology more difficult as well.



b_edward
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01 Nov 2013, 9:54 pm

I've been thinking about the rest of the adults who are in the same circles as myself, who do not appear NT in any way. (One I know is Schizophrenic, some I suspect may be ASD, all clearly have social issues regardless)

(By "same circles" I mean work, church, etc. -- people I'm around a lot.)

I complain about issues I have, but I rarely do anything to help anybody else(except maybe on forums online.)

So for the people I'm around a lot in real-life, I've started to sort of just let them know that I know they exist, and I've told a couple of them that I tend to feel more comfortable around them than I would around many of the extroverts and NTs around. Now there's just sort of a silent understanding among myself and many of these individuals. May be a far cry from actual "help" of any sort, but it might be better than nothing. And the best part is none of us is offended if not offered a typical "Hi, how are you doing?" greeting by the other.



anneurysm
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01 Nov 2013, 10:04 pm

I'm also in Ontario (Barrie area) and am also dismayed at the lack of adult supports and the general lack of acknowledgement towards the adult ASD population. As others have mentioned, this lack of support is really prevalent and I`m well aware of the stigma that can sometimes be present when adults with ASD speak up. I`m a little surprised that your chapter doesn`t have an adult group in place...I know that these aren`t with all chapters but I strongly think they should be. I really think you should bring up this issue with your local chapter because you aren't alone, and there are likely may other adults who would like to share experiences as well.

You should voice your concerns with your chapter - perhaps in a friendly letter - and that way you can gouge their interest. Chances are, this issue has been brought up already, but the more people speak up, the higher a priority it will be.

Good luck!


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This misdiagnosis caused me significant stress, which lessened upon finding out the truth about myself from my current and past long-term psychiatrists - that I am a highly sensitive person but do not have an autism spectrum disorder

My diagnoses - anxiety disorder, depression and traits of obsessive-compulsive disorder (all in remission).

I’m no longer involved with the ASD world.


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01 Nov 2013, 11:46 pm

Willard wrote:
... Adults with autism don't have the "Aww" factor that children have ...

That makes sense. It seems that children and adolescents "deserve" more concern than adults, and I suspect that the general concept in those support agencies is that once a person reaches the age of 18, they are either "cured" or "hopeless" - the latter becoming the sole responsibility of their families, who must then cope with a lifetime of supporting a "cripple" or a "r_t_rd".


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02 Nov 2013, 7:09 am

It's exactly the same in my country, but I think no doubt, the care given is far worse than the input they give out. Hence loss of jobs, no jobs, enter panic station meltdown before Christmas and still not have a nice word to say to anybody in the yuletide.



Ann2011
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02 Nov 2013, 1:18 pm

I wonder if they think we're a write-off because we didn't get early intervention.



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02 Nov 2013, 2:09 pm

b_edward wrote:
So for the people I'm around a lot in real-life, I've started to sort of just let them know that I know they exist, and I've told a couple of them that I tend to feel more comfortable around them than I would around many of the extroverts and NTs around. Now there's just sort of a silent understanding among myself and many of these individuals. May be a far cry from actual "help" of any sort, but it might be better than nothing. And the best part is none of us is offended if not offered a typical "Hi, how are you doing?" greeting by the other.


Seems like a good strategy


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