Families of Adults Affected by Asperger's Syndrome

[goddess40]

http://www.faaas.org/home.php?5,0,280283,faa280283,,,Index,home.html

Does anyone here belong? It's a $9 membership fee to use their boards and I was just wondering if anyone had an opinion one way or the other.

[liberalhistorian]

1. I kind of have a problem with it, myself, frankly,

I understand their purpose and I know they're well-intentioned. But a lot of their materials seems to me to be, quite frankly, a little hostile toward the person with Asperger's and the focus is all on the spouse/family member, or "neurotypical" as they call it. That, in itself, I have a problem with, the "neurotypical" designation, as if the Aspie is a freak and not normal. Aspies can't help their brain wiring anymore than anyone else can, and it's incredibly frustrating and exhausting for them to have to constantly worry about their affect on everyone else, and worry about everything they say and do.

My teenage son is an Aspie, diagnosed eight years ago at eight years old. My fiance is an Aspie, even though he's 53. I think that's one of the things that attracted me to him, he was so much an adult version of my son, whom I've always found fascinating. I, myself, am learning disabled, hearing impaired and bipolar, so I have my own "issues", especially "social." None of us have a "social" sense, we're social klutzes. My fiance used to call himself socially "retarded", until I put a stop to that, saying he was NOT retarded in any way. I don't think it's really possible for people to understand what it's like to go through everyday life without a social sense, unless they actually experience it for themselves. They have no idea how exhausting and frustrating every day can be. I have little patience anymore with people who have a problem with that, or family and friends who have a problem with that. Maybe it's just that I'm getting older and tired of dealing with it, but I don't care anymore if somone has a problem with it.

Sorry for the mini-rant, but I've lost patience with groups like this. And the message boards seem to all be whining about their awful, terrible Aspie and what a saint they are to have to put up with it. The hell with that. Sorry for the harshness, but that's just an "insider's" opinion.

[KamaAina]

2. We came up with the word "neurotypical" ourselves

because we got sick and tired of hearing everyone else called "normal". I have even (erroneously) been given credit for originating it!

That being said, charging to use the message boards sounds like yet another means of preying on desperate family members, like a small version of the places that charge upwards of $100K a year for ABA training. :grr:

[liberalhistorian]

3. I'm not sure I follow you regarding

"neurotypical." That is the word used by FAAAS to describe non-Aspie family members, in all of their materials.

[KamaAina]

4. We use it to describe *all* non-Aspies

instead of the dreaded "normal" (i.e. implying that we are "abnormal").

There is even a facetious "Institute for the Study of Neurotypicality" (ISNT):

http://isnt.autistics.org

What Is NT?
Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity.

Neurotypical individuals often assume that their experience of the world is either the only one, or the only correct one. NTs find it difficult to be alone. NTs are often intolerant of seemingly minor differences in others. When in groups NTs are socially and behaviorally rigid, and frequently insist upon the performance of dysfunctional, destructive, and even impossible rituals as a way of maintaining group identity. NTs find it difficult to communicate directly, and have a much higher incidence of lying as compared to persons on the autistic spectrum.

NT is believed to be genetic in origin. Autopsies have shown the brain of the neurotypical is typically smaller than that of an autistic individual and may have overdeveloped areas related to social behavior.

:rofl:

[merwin]

18. I love that "ISNT" description

It's hilarious!

[TrogL]

29. I call them "Normies"

with disgust in my voice.

[KamaAina]

5. I kind of have a HUGH!!11!!!1 problem with this...

Feelings of rejection and loneliness play a major role in the lives of the family members of an individual with Asperger’s Syndrome. Their feelings are not validated, acknowledged, or even recognized by the afflicted person.

:grr: :banghead: :nuke:

I doubt that Mom would agree that "feelings of rejection and loneliness" play "a major role" in her life... alas, she's pretty much the only family member I've got, never having run across someone like you who is attracted to , rather than repulsed by, us. :(

[liberalhistorian]

6. I know, that's exactly the kind of shit

I'm talking about, and why I have a HUGE problem with FAAAS and their stupid "informational" materials. My learning disability and hearing impairment have much of the same manifestations as Asperger's and the autism spectrum (as is the case with many of the learning disabled, particularly as severe as mine), and every fucking day of my life for over forty years I've had to deal with not having a social sense, not perceiving and understanding things the way "normal" people do, etc., etc., and the fallout in jobs, personal relationships, etc.

My family understands and loves me, and I have two close friends who both understand and accept me. That's really all that matters. I don't waste time anymore agonizing over people who don't understand me or what I deal with day after day and how exhausting and frustrating every day really is. Constant worry over everything you say and do, and misinterpreting things and whether your behavior is inappropriate, especially in work situations, gets to be too damned much after awhile.

Fuck FAAAS and their hostility toward the afflicted and refusal to recognize and understand how painful and frustrating it is and ESPECIALLY their seeming indifference to the fact that WE CAN'T FUCKING HELP HOW OUR BRAIN IS WIRED AND HOW WE ARE. And anyone who has a problem with that and doesn't want to deal with us because of it can go to hell. Sorry for the harshness, but after a lifetime of dealing with this EVERY fucking day, and seeing the pain and frustration my son and my fiance endure EVERY day, despite the fact that they're wonderful people, and after seeing how too many people, including the idiots at FAAAS, refuse to look beyond the affliction to the real person underneath, I don't give a damn anymore.

One of us should email or post this thread on FAAAS and watch the heads explode.

[KamaAina]

8. But see, there's the trap. We *can't* post to FAAAS unless we feed them nine bucks.

Not gonna happen.

:wtf: I really never heard of a non-porn site that charged to use message boards!

I suppose I could try to find out who's behind this... you'd be surprised who I know in the field...

[liberalhistorian]

9. You know, that might not be a bad idea to do that.

The more I think about it, the angrier I get. Especially the whole ridiculous "Cassandra Affective Disorder" bullshit. And it gives those married to an AS a scapegoat to totally blame the AS for any problems, discounting any of the NT spouse's issues and behavior that may contribute to problems in the marriage.

That's what's happening in my fiance's case. He didn't know he was an AS until after his divorce. The marriage was miserable, but it wasn't all due to his AS. His ex was a controlling, nasty, cruel, hypocritical, bitch who abused her own daughter, and then, when my fiance intervened and stopped her, she'd abuse the daughter even more when my fiance wasn't around, blaming HER. She was emotionally abusive, as well. This comes not just from my fiance, but from his family, their mutual friends and colleagues, and from his stepdaughter herself; we are good friends with her and she refuses to even speak to her mother, let alone see her. The horror stories she could tell about her mother's treatment of both her and my fiance would curl your hair. But no, in the ex's eyes it was ALL my fiance's fault and ALL because he's AS. She won't stop sending him materials from FAAAS, too, complaining about having suffered as a Cassandra, which is complete bullshit. We take delight in shredding any missives we may receive from her.

When she heard we were getting married, she sent a "congratulatory" card, along with a fucking FAAAS brochure about the whole Cassandra nonsense, saying it described what she experienced and that she hoped he'd told me he was an AS so I'd be aware and prepared. Fucking bitch. He's a wonderful, caring, loving person underneath his AS and fuck her and FAAAAS for refusing to look beyond the superficiality of the AS and see that.

[liberalhistorian]

10. I say we start a new group, called

Adult Asperger's Affected by Family!!!!! And I'm only half-joking, too, frankly.

I shudder to think what my teenage son will have to endure from and because of the likes of FAAAS and its ilk.

[liberalhistorian]

7. OMG, I just took a more detailed look at their

site and I cannot believe what I read! Especially the article written for family law attorneys on representing the Cassandra in divorce and separation and how their fears of the harm an Aspie parent would do to the children are very real and should be taken seriously instead of as an alarmist. It talks about dealing with the "unusual parent" and why they should be viewed with suspicion, and as possibly harmful, by the courts, and how the poor, misunderstood, perfect, wonderful, saintly Cassandra should be canonized.

Jesus H. Christ on a raft, I'm so angry now I can hardly fucking see straight! The HELL with these people and their bullshit site!!! :mad: :mad: :mad: :mad: :mad: :puke: :puke: :puke: :puke: :banghead: :banghead: :banghead: :banghead: :banghead:

And as for "feelings of rejection and loneliness", what in the FUCK do they think it's like for the Aspie/autistic, learning disabled, etc.?

I'm going to email them ([e-mail]) and tell them exactly what I think of them and their goddamn site. EXACTLY.

[goddess40]

11. Thanks everyone, I think I'll pass on this group

I sure don't need any more negative input.

[hunter]

12. Well no, not me, because I'm explicitly excluded...

I'm a holy terror when I'm out of whack -- ask anyone who loves me.

Good drugs and good therapy go a long ways keeping me functional.

Fortunately I live among very practical people. But my wife & kids certainly could tell some stories about me.

What my wife and I are fortunate to have is a family tree full of autistic spectrum people -- from mildly eccentric to living alone in a small apartment pursuing some very obscure obsession all one's life. We have a family culture for dealing with the challenges.

[KamaAina]

13. Now meet the guys in the white hats: the Asperger's Association of New England

http://www.aane.org

The Asperger's Association of New England (AANE) is made up of individuals with Asperger's Syndrome (AS), their families, friends and professionals. We are dedicated to improving the quality of life for people with AS and related conditions. AANE is overseen by a Board of Directors. The Executive Director is Dania Jekel. Our mission is to foster awareness, respect, acceptance, and support for these individuals and their families.

That's more like it! None of that "rejection and loneliness" crapperoo.

The two groups are presently feuding at the Mass. legislature:

http://weeklydig.com/news-opinions/news-us/200710/bickering-well-others

Patrick's bill, HB2208, was drafted by a group called Families of Adults Afflicted (! - apparently they've dropped that in favor of 'affected') by Asperger's Syndrome (FAAAS). It would enact a "public education program" about adults with the disorder. The other bill, MB3838, was sponsored by L'Italien and was written by the Asperger's Association of New England (AANE). It would establish a pilot program that would "provide services which lead to paid, customized, sustainable employment" for adults with Asperger's. Ostensibly, the two bills have the same aim: increased awareness of and funding for adults with Asperger's syndrome, a neurological disease that's thought to be a milder form of autism. The need is real: Despite its lifelong symptoms of social discomfort and inappropriate behavior, the syndrome is only recognized as a childhood disease in the United States, with few resources dedicated to adults with the condition....

But despite the efforts of the sponsoring legislators, the two groups behind the bills have refused to cooperate, or even appear in the same hearings to support each other. At a hearing for one of the bills in March, there was a last-minute dispute over which group would testify, and FAAAS ended up staying at home. Two weeks ago, at a hearing for the FAAAS-sponsored bill, representatives of AANE were conspicuously absent.

"There is a philosophical difference between the two groups, which is a shame," says Harriet Simmons, a Wellesley therapist who serves on the board of FAAAS. "AANE is pretty much for individuals with Asperger's, and FAAAS is supporting families around the issue with Asperger's."

The rift between the two groups stems from fundamentally different opinions of Asperger's syndrome, which FAAAS views as decidedly negative. Karen Rodman, the founder and president of FAAAS, is a veteran of 43 years of marriage to a husband with Asperger's, who was only diagnosed relatively recently.

"Decidely negative", indeed! With friends like these, who needs enemies?

[liberalhistorian]

14. FAAAS is "supporting families?"

Supporting, how? By completely denigrating and demoralizing and demonizing those with AS and autism, and canonizing those poor, saintly family members who must deal with their horrible, terrible family member? By giving the family members, especially spouses, a scapegoat by which they can then point to as the cause of ALL of their problems, thus getting off scot-free in terms of dealing with any of their own contributing issues and behaviors? By giving FALSE education to the public regarding AS, thus serving to perpetuate the negativity and stereotypes surrounding AS and make life even more difficult for those afflicted than it already is? FUCK THEM.

As the mother of a teenage AS son, and the soon-to-be wife of an AS, and as one with her own learning disability bordering on autism and dealing with the same social issues as many AS, and on behalf of all of those dealing and struggling with AS, I am extremely offended, insulted and infuriated by FAAAS and their negative, hateful agenda. Mrs. Rodman and your ilk, you do NOT speak for me and you NEVER EVER will.

I'm going to email that, with some other pieces of my mind, directly to them. The next time I get a mailing from them, I'm going to rip it up and stomp on it. And the next time my fiance's ex sends me more FAAAS bullshit, especially regarding the "Cassandra" nonsense, I'm going to rip it up and send it right back to her with a note telling her to deal with her own controlling, abusive nature and quit blaming their divorce on the AS (she's had other divorces as well, they've said the same thing about her).

Is there something concrete we can do to fight against them? Form our own group, perhaps, of family members who actually want to support their AS and provide POSITIVE public education and awareness? I'm serious, I'm not just blowing smoke. I just joined wrongplanet.net a site for AS/autism people and their parents/spouses/families; perhaps I should mention it on there?

[liberalhistorian]

15. Well, I did it!

I sent a long, blistering rant to FAAAS through their "guest comments" on their website, and included my email address for a response. Funny, no response yet. Surprise, surprise, suprise! Guess they don't like hearing the truth and that they do NOT speak for most families AT ALL!

I also told them I'm in the process of establishing a group for AS/A/LD adults, to provide support, advocacy, education, and career/employment training, information, awareness and support. Anyone interested in joining up with me please PM me and I'll give you the email address I've set up for it.

[liberalhistorian]

16. Still no response yet, though by tomorrow night it will

be a week since I will have registered my distinct and total displeasure with them. Gee, what a surprise. Maybe they're still picking the barbs out. Then again, maybe they're still trying to figure out how best to spin a response. Whaddaya wanna bet which scenario is more likely?

[liberalhistorian]

20. STILL no response yet, and it's been

almost two weeks! Golly Gee Willikers, why am I not surprised? Fucking hateful cowards.

[merwin]

21. From their FAQ... they blame your e-mail program.

I have sent several emails to FAAAS and no-one has every gotten back to me!

If a single message has not been replied to, it could simply be that it was lost in our mailboxes! At FAAAS, we receive sometimes hundreds of messages a day (including spam messages). Sorting through all of that on a daily basis can be quite a challenge and sometimes a few messages have been known to get lost. We apologize for that! Please know that we try to respond to every email as soon as possible.

However, if multiple messages have not been replied to, then there are two possibilities for you to investigate:

1. Your mail program is filtering out messages from FAAAS as spam.

Check the documentation that came along with your email program, or the website of the company that creates it for further information on how to keep FAAAS emails from being flagged as spam.

2. Your internet service provider is tagging our messages as spam so that they never get to your email program. (AOL is notorious for this)

The best way to check to see if this is the case is for you to send us a message using an alternate email address, preferrably with another ISP. Go to Yahoo or Hotmail and set up a free email account with one of them.

[liberalhistorian]

25. Well, well, well, it looks like the cowards

are never gonna respond to my email. Figures, doesn't it? In the meantime, I just sent an objection letter via email to the national advice column Annie's Mailbox, as they recently promoted FAAAS as an information source on Asperger's in response to a woman whose husband had just been diagnosed with it. We'll see if they have the gumption to publish it in a future column.

I'm still working on forming that non-profit I was discussing in my other posts on this thread; feel free to PM me if you're interested.

[merwin]

28. You should try sending the e-mail a few more times.

They claim that some e-mails just get lost in the mix

[merwin]

17. That site is really screwed up. It provides good info and articles about Aspergers, then

proceeds to completely bash it.

And how can the Aspergers Syndrome coalition of the US give them an award?

Honors & Awards

Asperger Syndrome Coalition of the US
"International Champions of Public Awareness Award"

This award was presented to Karen Rodman at the Bridges To Unity Leadership Conference held at the JW Marriott Hotel in Washington DC during the weekend of August 10-12th, 2001. She and her son, Thomas Rodman attended the conference as official representatives of FAAAS, Inc.

[liberalhistorian]

19. Oh, puke!

You've GOT to be kidding me, ARRRGGHHHH!!!! I repeat that I'm serious about the group I'm forming; anyone interested, please PM me.

[Kajsa]

22. OK- As the mother of a 23 yr. old with autism,

this is my take on their opening statement,( a portion)

"These family members are the ones we intend to help. Feelings of rejection and loneliness play a major role in the lives of the family members of an individual with Asperger’s Syndrome. Their feelings are not validated, acknowledged, or even recognized by the afflicted person."

"These family members are the ones we intend to help."

that sums up their mission. That is who they concentrate on.

"Feelings of rejection and loneliness play a major role in the lives of the family members of an individual with Asperger’s Syndrome."

for me, the loneliness and rejection I feel is that which is directed towards my son.
I don't feel rejected, I feel my son is rejected and that hurts. And yes, it is lonely at times,
especially when the " outside world" doesn't have a friggin clue as to what autism/Aspie is about.

"Their feelings are not validated, acknowledged, or even recognized by the afflicted person."

Wanna bet my son doesn't know what this feels like for me?
He sure as hell does and he tells me so.
Anyway, how and why would I expect him to fully " validate", etc, my feelings
when he is the one with autism?

This group may have good intentions ( or not)
but they are going about it in the wrong way.

And I too have major problems with the fee.
Help is help- there should not be fees involved.

-- just my two cents.

PS- I only read the first two paragraphs of this link.

[liberalhistorian]

23. Very well-put, I totally agree!

My son and similar others are the ones who have to deal with the constant loneliness and rejection, and the negativity and stereotypes promulgated by this so-called "awareness" group don't help at all, they make matters much worse. And I really resent them for that. And did you know that they used to use the word "afflicted" in their title, instead of "affected"? Until the condemnation they were getting for it got too much for them. My son is NOT "afflicted", he simply thinks and talks differently. I find him fascinating, frankly, as is my 53-year-old Aspie fiance.

How many family members who are "affected" truly make an effort to understand their members with AS/autism? My experience is that the family members who would use a group like FAAAS are those who make no effort to understand others, but expect them to conform to what THEY think is "normal". They're conformists, in other words, who do not tolerate differences too well and who blame the person; they refuse to recognize that the condition is beyond the person's control and that they're not just "acting up" on purpose.

My stepmother is like that with my son, drives me freaking crazy. She and my dad so obviously favor her "normal" grandson that it's truly sickening and I've about had it. My son is a good kid who tries and who must deal with his condition every damned day of his life, he doesn't deserve that kind of treatment from his own damn family.

I still say we form our own group for adults with it and SUPPORTIVE families, since services for adults are sorely lacking; this is especially true in education and employment.

[Kajsa]

24. LiberalHistorian, I'm with you!

There are some really great parents and family members of people with PDD, autism and Asperger's
in this forum.

The members here who do have it are really great,too.

My son is dealing with TOTAL rejection from one of his aunts, his dad's sister.
She has done nothing but exclude him from EVERY damn family function she has had
for the past 20 years. It makes me sick, especially when it hurts him so much.
I tell him to consider the source. She's VERY self centered, social appearance conscious
and anyone or anything out of the "norm" is unacceptable to her.

She also doesn't get that he can't help the way he is.

Screw her! I haven't had anything to do with her for a long time, way before I got
divorced from her brother.

Last time my son went to her place, she wasn't home.
He noticed immediately that all the cousins had their pictures displayed on the walls.

THERE WAS NOT ONE DAMN PICTURE OF MY SON!

He doesn't "exist" as far as she's concerned.

It's sad and it's her lose.
He's a great guy.
I'm tempted to send her a picture of him,
but I don't know that it would do any good.

Thanks for the great reply,btw.

:hi: :hug:

[lumberjack_jeff]

26. It is in my nature to be a contrarian.

I have no intention of signing up for their boards - because it's apparent that their target market is considered by them to be a market demographic, who can be attracted to (and be willing to pay for) a pity party - not people who need help.

I do think that there's a need for help for the families of people with ASD independent from the help needed by the individuals themselves. There are very many tragic situations in which parents who lack support for their low function children opt for institutions because there is no (or very little) community support available. Funding for community supports implies support for the families.

And because ASD is a spectrum, there are certainly people for whom "afflicted" doesn't apply, but there are those for whom it does.

I'm also interested in a dichotomy I hear: "I don't 'suffer' from an 'affliction', and I don't understand why this site markets itself to the family members - they're not the ones with ASD"

[liberalhistorian]

27. We're well aware of, and agree with, the truth of what

you're saying. Families most certainly do need help and support beyond that given to the AS person. It's the ATTITUDE of this site that's objectionable, and the blatant MISINFORMATION they're providing. They have a very hateful, negative attitude toward AS and those who have it, even believing that Asperger's "hurts families". They aren't interested in any services for adults with AS that would help the families as well. The "information" they disseminate, and the "awareness" programs they hold, only serve to perpetuate stereotypes and, thus, discrimination and negative attitudes against those wish AS. They are a hateful, harmful, negative, organization that should be driven out of business.