So what if I'm not a child? I still have AS doesnt that coun

Page 1 of 2 [ 18 posts ]  Go to page 1, 2  Next

TrueDave
Veteran
Veteran

User avatar

Joined: 27 Jul 2007
Age: 51
Gender: Male
Posts: 1,062

16 Jan 2008, 9:38 am

My citys online AS community is only for parents of AS kids.

I cut off my membership after two days .I didn't like reading posts where I (an AS) was being talked about, as an outsider.

This summer I tried getting insurance and called around to see if it would cover AS. I got a LOT of "isn't that a chilhood condition?"

Finally I started lying to make my calls easier ( who says I can't adapt to the NT world? :) )ANd said I was calling on behalf of my son who still lives at home but is out of High school.

I'm all for doing everything for helping kids but does it ever seem like people don't try to help you as much one you're an adult?



Mogwaigrrl
Emu Egg
Emu Egg

User avatar

Joined: 7 Jan 2008
Age: 51
Gender: Female
Posts: 8
Location: Orlando, FL

16 Jan 2008, 10:09 am

I hear you.

I've tried and tried to find doctors or therapists in my area that treat AS, but everything around is strictly focused on children.

I've contacted all of the local autism organizations, but the only contacts they have are with child development centers. I ended up scheduling an appointment with a psychiatrist, but I'd much rather talk with someone who is specifically knowledgeable about these issues. It's very frustrating. :roll:

Like you said, I completely support them focusing on helping the children, but you'd think there'd be something out there for the grown-ups.



Last edited by Mogwaigrrl on 16 Jan 2008, 10:18 am, edited 1 time in total.

Izaak
Veteran
Veteran

User avatar

Joined: 10 Jun 2007
Age: 43
Gender: Male
Posts: 981
Location: Perth, Western Australia

16 Jan 2008, 10:15 am

echoing sentiments out of frustration.

I have found a distinct lack of support for anyone over 18 who is on the spectrum and does not require full time supervision or other such. There are no less than 5 groups that I have found, in my area, that support family and friends of those on the spectrum.



Tim_Tex
Veteran
Veteran

User avatar

Joined: 2 Jul 2004
Age: 44
Gender: Male
Posts: 45,472
Location: Houston, Texas

16 Jan 2008, 10:22 am

The nearest adult AS group to me is in Fort Worth, just over 100 miles away.

The group in Lawton, Oklahoma (about 50 miles from my college) is for parents of kids with AS.


_________________
Who’s better at math than a robot? They’re made of math!

Now proficient in ChatGPT!


CityAsylum
Veteran
Veteran

User avatar

Joined: 7 Jan 2008
Gender: Female
Posts: 3,190
Location: New York City

16 Jan 2008, 10:28 am

Mogwaigrrl wrote:
. . . I ended up scheduling an appointment with a psychiatrist, but I'd much rather talk with someone who is specifically knowledgeable about these issues. It's very frustrating . . . you'd think there'd be something out there for the grown-ups.

That's the absolute truth - and you'd think it would be easy to find someone in a place like NYC, but it isn't.

Instead you end up with psychologists, psychiatrists and social workers who set about trying to fit you into THEIR specialized little areas, by categorizing you as borderline or bipolar, or some other handy description that they feel most comfortable with.

After you have spent a few months teaching them about AS, you realize that they should be handing you money, not the other way around.



Living_in_Gin
Tufted Titmouse
Tufted Titmouse

User avatar

Joined: 8 Jan 2008
Age: 49
Gender: Male
Posts: 40
Location: Cincinnati, Ohio, USA

16 Jan 2008, 11:56 am

GRASP.org seems to have a number of resources, particularly here in the NYC area. Does anybody have experience with this organization?

Also, I'm wondering if there are enough WP members in the NYC area that we could arrange some sort of meet-up on our own?


_________________
I've lost my faith in nihilism.


CityAsylum
Veteran
Veteran

User avatar

Joined: 7 Jan 2008
Gender: Female
Posts: 3,190
Location: New York City

16 Jan 2008, 12:04 pm

Living_in_Gin wrote:
GRASP.org seems to have a number of resources, particularly here in the NYC area. Does anybody have experience with this organization?

I was actually going to contact them to see what I could find out - Thanks!

Meeting with others would be great, but those of us with sensory issues are usually out of luck in a group, because of all the cologne/perfume - I wondered if it might be safe in a group of aspies, but I'm too nervous to attempt it!



OregonBecky
Veteran
Veteran

User avatar

Joined: 30 Sep 2007
Age: 70
Gender: Female
Posts: 1,035

16 Jan 2008, 12:16 pm

This thread is very helpful for me. I'm starting a group in my area, got the fliers finally finished, to have adult autism spectrum people and parents of grown people on the spectrum and anyone else who cares to get together, figure out which problems we share and then together try to solve them. I'm not sure which directions the group will take. Housing, jobs, doctor appointments,.... who knows? If this insurance thing came up, I'd leave the meeting with homework and call my insurance agent and ask for advice.


_________________
Time flies like an arrow. Fruit flies like a banana.


kittenfluffies
Veteran
Veteran

User avatar

Joined: 6 Feb 2007
Age: 42
Gender: Female
Posts: 519
Location: Gulfport, MS

16 Jan 2008, 12:51 pm

Though my assistance is limited, reading this thread makes me realize how lucky I am. I live right next to an Autism Resource Center that has social groups for adults with AS. They also do evaluations (they did mine) for people on the Autism Spectrum no matter how old they are. I'm assuming if I ever needed disability help they would help me with it, though right now I am functioning relatively well.


_________________
Mew mew mew, mew mew mew mew? Mew. Mew mew mew mew, mew. Mew mew, mew. Mew!


Wolfpup
Veteran
Veteran

User avatar

Joined: 14 Apr 2007
Age: 47
Gender: Male
Posts: 1,409
Location: Central Illinois, USA

16 Jan 2008, 10:24 pm

Same situation here as all you guys. I'd love to be in a group like that, but the only thing that exists is for parents of kids.

I did start attending an OCD group! I was totally shocked that one exists around here. It's super small, but that's probably a good thing for me, and it's really nice having an actual group I can fit in at.



Belfast
Veteran
Veteran

User avatar

Joined: 17 Jul 2005
Age: 51
Gender: Female
Posts: 1,802
Location: Windham County, VT

17 Jan 2008, 4:54 am

Izaak wrote:
echoing sentiments out of frustration.
I have found a distinct lack of support for anyone over 18 who is on the spectrum and does not require full time supervision or other such.

Wolfpup wrote:
Same situation here as all you guys. I'd love to be in a group like that, but the only thing that exists is for parents of kids.

QFT. Have encountered same thing with AANE-they have online groups for parents of dx'd children & teens, but not for the people who actually have the dx themselves. Pretty much same pattern is true for offline (local/regional) groups. This state of affairs seems to be replicated all over the place. The few areas where I know of dx'd adults being included (let alone, a group in which dx'd adults are the majority) are all too geographically distant from me. Feel stuck in some grey area between "too functional" and "not functional enough", to fit in any group/category/demographic.
I'm 34, and since wasn't dx'd until 4 years ago-as a child I was never considered someone with an ASD. It's not like I can get retroactive resources for the kid I once was-adults need support for who they are now, currently (by the time they get this diagnosis) !


_________________
*"I don't know what it is, but I know what it isn't."*


TLPG
Veteran
Veteran

User avatar

Joined: 12 Nov 2007
Age: 58
Gender: Male
Posts: 693

17 Jan 2008, 6:22 am

Oh this subject is one I know plenty about!!

When I first sought a support group to join when I was DXed in 1997 I ran into the same issue. There was a group in my home town......guess the rest!

Even now it's an issue of sorts. At the seminar I attended as a part of the consultation process for the Autism State Plan here in Victoria (Australia) the emphasis was on children. Now I'm all for that - but it was just as important to make sure that adults were not forgotten in the effort. Hopefully I succeeded in this respect.

Of course, that doesn't exactly help those of you in the US who are running into these problems! Especially right now! Hopefully the Autism State Plan ends up being so successful that not only the other states and territories in Australian pick it up, but the states of the US, the provinces of Canada and the counties of Great Britain (at least) picks it up as well.



TrueDave
Veteran
Veteran

User avatar

Joined: 27 Jul 2007
Age: 51
Gender: Male
Posts: 1,062

17 Jan 2008, 12:24 pm

Even the doctor I do have mostly specializes with children. And I realize two of his other clients are mentally retarted.
And the therapist that set ne up with him said he had the most experience out of the agency.

I realize now why I have never felt right with him. He deals with non or low functioning types. I"m high functioning. I realized the problem one day when I needed to discuss something sexual but he was obviously uncomfortable with it.
I missed a group meeting he invited me to at his private practice and have not seen him in almost a month. When he returned a call from me finally yesterday he said he had time after lunch. I told him back back had gone out again and I wasn't getting off the couch for anyone for a while.
The clinic is closeby. He offered to stop by in person. Does that seem inappropriate to you?

I hear what you're saying about feeling like you're in a gap between worlds. Another WP person described her experience as a wall between her and the world of NT. I feel more like I'm in a pit between them and my non functioning cousins.

I tell ya, I take WP for granted. I forget that we all all so far apart, and I don't mean just physically. It's like we're all truckers on CB raidos. If you're reading this thread you're probably old enough to remember the CB craze and you get the analogy.



Grimfaire
Deinonychus
Deinonychus

User avatar

Joined: 5 Aug 2007
Age: 53
Gender: Male
Posts: 307
Location: Michigan

17 Jan 2008, 3:38 pm

Hell yea! I'n not as old as many of the members but I'm certainly well older than the majority I believe. I grew up well before there was ever an official AS and you were either autistic(low functioning) or not. As I could pass any test put in front of me, I was obviously not autistic. Of course they never looked at the fact that I never had more than 1 friend who basically just tolerated me because he didn't have any himself (until he did get some then I was dumped). Or that I never looked folks in the eye, made "funny" motions all the time, didn't move like anyone else, etc... you all know the signs and symptoms by now.

Of course now that I'm approaching middle age, there is no help for me and I'm "obviously" functioning because I live on my own and hold a job. No matter that it's for 1/3 the pay anyone else in my field gets with comparable experience/certs/degrees or that my NT sister comes down twice a month to help me around the house do things I can't do for myself.

So I'm all for help with for those of us over 18 who aren't in need of group homes or full time care givers.


_________________
When in trouble or in doubt; run in circles scream and shout.


poopylungstuffing
Veteran
Veteran

User avatar

Joined: 8 Mar 2007
Age: 48
Gender: Female
Posts: 6,714
Location: Snapdragon Ridge

17 Jan 2008, 4:08 pm

Oh geeze..I can relate...I had similar problems finding ay resources in my area for adults with ADD,,,(in between phases of AS fixation).....
It seems as though most psych offices think that if you are an adult attempting to seek help for ADD, then automaticly you are a speed freak...I had so many receptionists who were downright rude to me....NO! We don't do that!!....I was in the midst of an emotional meltdown...desperately trying to find someone (who carried my insurance at the time) who would help me, and there was NOThing.....Finally I went to this Houston Adult ADD clinic..even though they did not accept my insurance... where for several hundred dollars, they had me fill out dozens of pages of questions...and then interview this frosty doctor for an hour who would not give me any sort of answer, but gave me several packets of lengthy questionairres for myself, my friends and family to fill out and then...um wanted to schedule me for hundreds of dollars worth of testing that I could not afford.....

I was trying to seek help for something that had adversely affected my work and social and personal/artistic life for most of my existance....I wanted to be a normally functional human being instead of a useless woman-child.....and I was either treated like a speed-freak...or given the impression that the only people who qualify for any help are upper middle class types who obviously must not have the problems that I have if they are able to be upper middle class in the first place...

When I did eventually get help, it was not very thorough...I had an RN accompany me and help me speak to another doctor....but there were complications there too and I had bad side effects from the meds and eventually the treatment I had wanted so badly caused me more harm than good...for the lack of decent affordable reliable resources...

I help run a performance and arts venue...someday, after we get settled in out new location, i want to have some sorta support group there for people with AS, ADD etc.....I fantasised about having a support group years ago when I was in my early 20's...for people who were having a difficult time adjusting to the "Adult World"...or "normal moder society"....regardless of lables....

but first, I have to cover up the scary ghost mural :wink:



woodsman25
Supporting Member
Supporting Member

User avatar

Joined: 18 May 2007
Age: 42
Gender: Male
Posts: 2,064
Location: NY

17 Jan 2008, 4:39 pm

well... it is unfortunate but thats what we are faced with. The problem is that parents pay good money to get their children the help they need. Also children obviously cant fend for themselfs, so they are more likly to get help then an adult who is supposed to be able to navigate the world on their own.

Unless you wanna pay money, your only option may be finding others with AS cause I dont think their is any free services out their for adults with AS really.


_________________
DX'ed with HFA as a child. However this was in 1987 and I am certain had I been DX'ed a few years later I would have been DX'ed with AS instead.