Page 5 of 13 [ 195 posts ]  Go to page Previous  1, 2, 3, 4, 5, 6, 7, 8 ... 13  Next

Monkeybuttorama
Sea Gull
Sea Gull

User avatar

Joined: 19 Jun 2012
Age: 37
Gender: Female
Posts: 214
Location: Somewhere beyond this pathetic "reality"

27 Jun 2012, 7:35 pm

CuriousKitten wrote:
Monkeybuttorama wrote:
One thing I'd like to see more readily available, which I feel is VERY important to adults with AS is parenting classes geared toward AS parents. There are so many questions I have, and only anecdotal information. What drawbacks are there to having almost no ToM? How can I overcome this hindrance? What about stimming around kids? What's appropriate for your child to see you indulge in? What if you are AS and have NT kids? What then? Clearly most AS people don't have a great grasp on NT thought patterns and behaviors. How about explaining to your child why you aren't like other parents?

What about support for CHILDREN of AS parents, to make sure THEY develop properly, even if they have no symptoms of anything?

If kids are so very important, you'd think they would realize how important it is to be a proper parent if you have a disability..

They are missing a HUGELY important factor in *childcare*, which is what they are focused on..


I doubt it has occurred to them that AS adults could be social enough to procreate.

Touche...



MindWithoutWalls
Veteran
Veteran

User avatar

Joined: 25 Oct 2011
Age: 56
Gender: Male
Posts: 1,445
Location: In the Workshop, with the Toolbox

27 Jun 2012, 8:22 pm

Sometimes it seems that only depicting the most extreme things happening to the most innocent and vulnerable little creatures moves anyone to care these days. Otherwise, it's much more exciting to watch tarantulas crawl on someone's face to see if they get scared. After all, if you're going to part with your money, don't you need to be maximally entertained first? And we all know that, yes, anomy, money is a factor, for sure. Without it, how will all the services and research get paid for?


_________________
Life is a classroom for a mind without walls.

Loitering is encouraged at The Wayshelter: http://wayshelter.com


Callista
Veteran
Veteran

User avatar

Joined: 3 Feb 2006
Age: 41
Gender: Female
Posts: 10,775
Location: Ohio, USA

27 Jun 2012, 8:25 pm

anomy wrote:
Could money be a factor?

This may sound somewhat cynical but I think one factor in why so much focus is placed on asperger kids versus adults may be in part because there is more money in it. Books, programs, whatever may sell better if tney are focused more on kids. Also, grants for kids may be much easier to come by for non-profits. Even corporate donations may be easier to come by.
Yes, I'd say that's part of it--not all of it, but definitely part of it. Kids have such easy access to special ed in school, compared to adults who have to struggle to get help, and school systems budget for special ed.


_________________
Reports from a Resident Alien:
http://chaoticidealism.livejournal.com

Autism Memorial:
http://autism-memorial.livejournal.com


cyberdad
Veteran
Veteran

User avatar

Joined: 21 Feb 2011
Age: 56
Gender: Male
Posts: 36,036

28 Jun 2012, 2:31 am

Verdandi wrote:
I would not assume that autistic adults require less support than autistic children and their parents. In fact, the abrupt loss of services for many young autistic adults is actually a fairly significant problem for many, and autistic adults' needs are often not really fully understood because historically those needs have rarely been met.

I tend to agree with one of the other posters here that parents push the online discussions on kids. Services are another matter. There is a general assumption that adults with AS or HFA are "more" independent and don;t require as much services as kids. Kids on the other hand may need speech therapy, OTs, psychologists, integration aides, neurologists, psychiatrists, paediatricians etc etc....



TalksToCats
Toucan
Toucan

User avatar

Joined: 1 Jun 2012
Age: 53
Gender: Female
Posts: 255
Location: UK

28 Jun 2012, 2:37 am

To go back to the question what adult services would I like to see, for adults with AS / ASD I would like, in no particular order:

1) Social skills training for adults

2) More specific life management skills training, when I have to do several things at once I often feel a bit overwhelmed, what strategies can help with this?

3) More research on the effect of late diagnosis on adults, including what coping skills / adaptations have they developed before diagnosis and how has this helped / not helped

4) On a purely selfish basis, as a woman, I'd like to see more research in general into identifying and understanding how autism presents in women and girls.

5) Better and more effective methods for adult diagnosis, especially for women where it seems weaker at the moment

6) Ability to access counselling / therapy with people specifically trained in needs of those who have been late diagnosed with AS / ASD

7) Support systems to offer specific assistance to those who are late diagnosed to come to terms with diagnosis if needed, information, resources etc

8) Specific training so some people with AS can train to be paid mentors to others, WP is great but sometimes I'd like to check in with a living breathing person not just words on a screen

9) Better information and support for parents with AS

10) Help, advice, maybe training, in how to explain and express emotions to others, I feel emotions intensely but find them very difficult to talk about it and express them to others

11) Self-Advocacy and assertiveness training for those with AS

12) Specific support for adults who have experienced a prolonged period of bullying in their lives, whether as adults or children

Give me time and I could think of more I'm sure....



Kjas
Veteran
Veteran

User avatar

Joined: 26 Feb 2012
Age: 35
Gender: Female
Posts: 6,059
Location: the place I'm from doesn't exist anymore

28 Jun 2012, 3:52 am

^^^
As per your above list.

All of those things are accessible here, but only through clinical psychologists who specialize in AS in one on one individual sessions. There has been no attempt here to create programs on a wider basis that would be accessible to the adult autistic community.

Whether that's because they make more money that way, no advocacy groups focus on adults or they see no need for it, who knows?


_________________
Diagnostic Tools and Resources for Women with AS: http://www.wrongplanet.net/postt211004.html


Last edited by Kjas on 28 Jun 2012, 4:22 am, edited 1 time in total.

Verdandi
Veteran
Veteran

User avatar

Joined: 7 Dec 2010
Age: 55
Gender: Female
Posts: 12,275
Location: University of California Sunnydale (fictional location - Real location Olympia, WA)

28 Jun 2012, 3:58 am

cyberdad wrote:
Verdandi wrote:
I would not assume that autistic adults require less support than autistic children and their parents. In fact, the abrupt loss of services for many young autistic adults is actually a fairly significant problem for many, and autistic adults' needs are often not really fully understood because historically those needs have rarely been met.

I tend to agree with one of the other posters here that parents push the online discussions on kids. Services are another matter. There is a general assumption that adults with AS or HFA are "more" independent and don;t require as much services as kids. Kids on the other hand may need speech therapy, OTs, psychologists, integration aides, neurologists, psychiatrists, paediatricians etc etc....


Well, this is an issue as the majority of autism-related activism, fundraising, etc. is driven by professionals who provide services and parents with autistic children. Autistic adults tend to be carved out of this system, and I've seen all too many occasions over the years in which NT parents would try to shut autistic adults out of conversations by telling them that they're either not really autistic or not autistic enough to be able to speak up.

I am not saying that it is bad for parents to advocate for their children, but rather that when there's advocacy it's wrong to try to shut adults out and minimize their needs.



Tuttle
Veteran
Veteran

User avatar

Joined: 26 Mar 2006
Gender: Female
Posts: 3,088
Location: Massachusetts

28 Jun 2012, 8:34 am

cyberdad wrote:
Verdandi wrote:
I would not assume that autistic adults require less support than autistic children and their parents. In fact, the abrupt loss of services for many young autistic adults is actually a fairly significant problem for many, and autistic adults' needs are often not really fully understood because historically those needs have rarely been met.

I tend to agree with one of the other posters here that parents push the online discussions on kids. Services are another matter. There is a general assumption that adults with AS or HFA are "more" independent and don;t require as much services as kids. Kids on the other hand may need speech therapy, OTs, psychologists, integration aides, neurologists, psychiatrists, paediatricians etc etc....


I'm going to an OT, a psychotherapist, a neurologist (for comorbids), my primary care and other doctors (primary care has to take my autism into account), working with vocational rehab...

Just because I'm over 18, doesn't mean I'm working with fewer services or needing fewer services.



Verdandi
Veteran
Veteran

User avatar

Joined: 7 Dec 2010
Age: 55
Gender: Female
Posts: 12,275
Location: University of California Sunnydale (fictional location - Real location Olympia, WA)

28 Jun 2012, 8:46 am

Tuttle wrote:
I'm going to an OT, a psychotherapist, a neurologist (for comorbids), my primary care and other doctors (primary care has to take my autism into account), working with vocational rehab...

Just because I'm over 18, doesn't mean I'm working with fewer services or needing fewer services.


My frustration here is that I've asked my caseworker and doctor and therapist about resources I could access along these lines. My caseworker blew me off completely, my doctor didn't have anything she could think of, and neither did my therapist.



Dillogic
Veteran
Veteran

User avatar

Joined: 24 Nov 2011
Gender: Male
Posts: 9,339

28 Jun 2012, 9:15 am

To answer the question though:

Most of us are at home and living off the fat of kings (disability pension) or our parents/family.

Most of us are too caught up in our interests to bother posting on a forum that's not about our interest (I'm a rare one there, like you, you, you, you, and you, plus all of you).

You're one of the lucky ones if you can work (also lucky if your interest is a subject that you can study).



Verdandi
Veteran
Veteran

User avatar

Joined: 7 Dec 2010
Age: 55
Gender: Female
Posts: 12,275
Location: University of California Sunnydale (fictional location - Real location Olympia, WA)

28 Jun 2012, 9:20 am

Dillogic wrote:
Most of us are too caught up in our interests to bother posting on a forum that's not about our interest (I'm a rare one there, like you, you, you, you, and you, plus all of you).


Crap, you found me out.



CuriousKitten
Velociraptor
Velociraptor

User avatar

Joined: 19 Mar 2012
Age: 65
Gender: Female
Posts: 487
Location: Deep South USA

28 Jun 2012, 11:19 am

Verdandi wrote:
cyberdad wrote:
Verdandi wrote:
I would not assume that autistic adults require less support than autistic children and their parents. In fact, the abrupt loss of services for many young autistic adults is actually a fairly significant problem for many, and autistic adults' needs are often not really fully understood because historically those needs have rarely been met.

I tend to agree with one of the other posters here that parents push the online discussions on kids. Services are another matter. There is a general assumption that adults with AS or HFA are "more" independent and don;t require as much services as kids. Kids on the other hand may need speech therapy, OTs, psychologists, integration aides, neurologists, psychiatrists, paediatricians etc etc....


Well, this is an issue as the majority of autism-related activism, fundraising, etc. is driven by professionals who provide services and parents with autistic children. Autistic adults tend to be carved out of this system, and I've seen all too many occasions over the years in which NT parents would try to shut autistic adults out of conversations by telling them that they're either not really autistic or not autistic enough to be able to speak up.

I am not saying that it is bad for parents to advocate for their children, but rather that when there's advocacy it's wrong to try to shut adults out and minimize their needs.


if someone is able to speak up in public, they're automatically deemed to not be autistic enough to be heard? Isn't that a catch 22?


_________________
If it don't come easy . . . .
. . . .hack it until it works right :-)

Aspie score: 142/200 NT score: 64/200
AQ Score: 42
BAP: 109 aloof, 94 rigid and 85 pragmatic


MindWithoutWalls
Veteran
Veteran

User avatar

Joined: 25 Oct 2011
Age: 56
Gender: Male
Posts: 1,445
Location: In the Workshop, with the Toolbox

28 Jun 2012, 12:52 pm

Dillogic wrote:
To answer the question though:

Most of us are at home and living off the fat of kings (disability pension) or our parents/family.

Most of us are too caught up in our interests to bother posting on a forum that's not about our interest (I'm a rare one there, like you, you, you, you, and you, plus all of you).

You're one of the lucky ones if you can work (also lucky if your interest is a subject that you can study).


My doctor indicated to me that Asperger's isn't a reason not to work, because she has patients who have it that work. Same thing with fibromyalgia. But fibromyalgia is the main disability claim I have, and I haven't worked in years because of it. That's why I'm on benefits. Also, my sister, who's a nurse, says she has at least one friend who can't work because of fibromyalgia. But I think my doctor is willing to consider the compounding effect of having multiple issues, which she agrees I do have, even before getting my Asperger's assessment finished. (Two weeks, now, until my last appointment and my answer, whatever it will be. Just finished my blog today about this week's appointment.)


_________________
Life is a classroom for a mind without walls.

Loitering is encouraged at The Wayshelter: http://wayshelter.com


MindWithoutWalls
Veteran
Veteran

User avatar

Joined: 25 Oct 2011
Age: 56
Gender: Male
Posts: 1,445
Location: In the Workshop, with the Toolbox

28 Jun 2012, 1:08 pm

Based on comments in the ASL and Mutism in Meltdowns / Shutdowns? thread, I now would like to ask: Would anyone like to see ASL taught as a service to adults on the spectrum?


_________________
Life is a classroom for a mind without walls.

Loitering is encouraged at The Wayshelter: http://wayshelter.com


EstherJ
Veteran
Veteran

User avatar

Joined: 4 Apr 2012
Age: 33
Gender: Female
Posts: 1,041
Location: The long-lost library at Alexandria

28 Jun 2012, 10:37 pm

Verdandi wrote:
Tuttle wrote:
I'm going to an OT, a psychotherapist, a neurologist (for comorbids), my primary care and other doctors (primary care has to take my autism into account), working with vocational rehab...

Just because I'm over 18, doesn't mean I'm working with fewer services or needing fewer services.


My frustration here is that I've asked my caseworker and doctor and therapist about resources I could access along these lines. My caseworker blew me off completely, my doctor didn't have anything she could think of, and neither did my therapist.


Yeah, when I got diagnosed my psychologist (who is primarily a children's psychologist, but since I'm 20 and still under my parent's insurance, they let me in) just said "I don't know what resources are in the area for adults. Check with insurance."

Yeah, like insurance is helpful. But this just clearly states the problem.



EstherJ
Veteran
Veteran

User avatar

Joined: 4 Apr 2012
Age: 33
Gender: Female
Posts: 1,041
Location: The long-lost library at Alexandria

28 Jun 2012, 10:39 pm

MindWithoutWalls wrote:
Based on comments in the ASL and Mutism in Meltdowns / Shutdowns? thread, I now would like to ask: Would anyone like to see ASL taught as a service to adults on the spectrum?


It would be nice. For me personally, I don't have any kind of mutism, except that it gets very difficult to speak when I'm in the middle of a shutdown. I CAN speak, but it's hard, and it would be easier to sign - "leave me alone," or " I need my space," something like that.

Maybe I can ask the ASL prof. at my school.... 8O