3/20/2010

In the Autism World: Parents, Positive Coping, and teh Interwebz


Raising children can be stressful. Parents and children alike can no doubt agree with that. There is little doubt that parenting children with autism often encompasses unexpected challenges. How parents cope with the diagnosis and the complications of navigating the treatment choices matters to the overall well-being of the family and the child. How they deal with their child specifically matters more, though. It's my personal belief that sites that cater to the negative and to the woo, all while making false promises of cure and recovery, are dangerous to the emotional well-being of both the parents and the children. All you have to do is spend an afternoon thumbing through the various AoA posts and comments to see that these folks feed each others' maladaptive coping mechanisms and work to make their positions all the more extreme. All you need for proof of that is to track back individuals' comments through time and you'll see that. Stories shift, positions change, and outright denial occurs when you attempt to point that out. Some bloggers even go back and alter their earlier posts in order to keep it in line with their newer positions. The cognitive dissonance must be deafening over there.

The internet, though, despite potential pitfalls,  is a tremendous tool for parents. As we've seen with specific sites like AoA, GenRes, TACA, Safeminds, ChildHealthSafety, as well as personal blogs, forums, yahoo and google groups that cater to the woo, there is an enormous possibility for parents to obtain woefully inaccurate information and to find themselves in online communities that cater to negative coping mechanisms and only make the situation worse for parents and children alike.

Sabo and Lorenzen (2008) conducted a search of reliable, health-related websites dealing with autism information so that parents newly dealing with an autism diagnosis for their child would be able to obtain reliable additional information. Ironically (for the anti-vaxxers who read this), the first website that Sabo and Lorenzen provide is the CDC's.

While conducting their literature review, Sabo and Lorenzen found that there were numerous difficulties with the internet: there's a lot of crap out there and most Americans are not very well educated on health matters: "Coupled with the inconsistent quality of information found on the Internet are problems with low levels of health literacy in the United States" (Sabo and Lorenzen). Well, let's be honest, they could have gone to one site (AoA) and realized that, but they didn't: they looked at other studies that showed that Americans aren't well educated in health-related matters.

In order to work around the poor literacy relating to health issues and that wealth of Jenny McCarthy-style google scholarship, Sabo and Lorenzen used stringent criteria when collating their list : "In order to ensure the quality of listed sites. Web sites reviewed for inclusion in this list met two criteria: they have government (gov), educational (edu), or organizational (org) domain names, and they are listed in either MedlinePlus or the Medical Library Association's (MLA) list of "Top Ten Most Useful Websites," or they were linked from a MedlinePlus or MLA-recommended site." That would have to chap the AoAer's asses even more than the CDC being the number one site.

Sabo and Lorenzen did not condemn all private consumer sites, though: "While acknowledging that parent-hosted sites, support groups, and some commercial sites can be extremely helpful, none of these Web
sites is included in this listing."

Medline Plus (link updated here) was second on Sabo and Lorenzen's list of sites for parents to go to. And the AAP was the first health web site listed. Oh, my, but this journal article would just really put the AoAers in a tailspin, wouldn't it?

Organizational websites was led by the Autism Society of America (an organization I don't recall looking at) followed by Autism Speaks. Ah well. This tells us, at least, that we've a lot of work to do to as a community to create an organization that rivals Autism Speaks. With all the money the organization has behind it, I'm not sure what can be done to minimize their influence, but tilting at windmills is a grand thing, and Kathleen and I (and T and L) will keep at it, as I know will many of our friends.

Online websites for information and online networking are potentially important tools in helping families cope (albeit it could go towards positive coping or maladaptive coping depending on the quality of the information these families access and the types of supports they find). More important for daily functioning, though, are the types of coping mechanisms parents adopt. Altiere and von Kluge (2009) note that families with children on the spectrum "must make significant adjustments to cope and function adequately." They continue:

As surely as the functioning of the family affects the child, the development of the child affects the functioning of the family.
Interestingly enough, paraphrasing Seligman and Darling's 1997 work Ordinary families, special
children (2nd ed.), Altiere and von Kluge write:

When a family is able to draw upon adequate resources and if they perceive the situation as manageable then the stress of raising a child with autism may never lead to a crisis. 

I don't doubt that many of the bio-med parents and AoAers place undue stress on themselves and view their resources as inadequate because they pursue expensive quack treatments. In addition, even parents following traditional therapies like ABA may place themselves into situations where they feel as if they do not have the adequate resources, since ABA therapy can cost upwards of 50 grand a year. It is an unnecessary and unrealistic burden that parents are placing on themselves, this pursuit of expensive therapies that are privately funded as they drive themselves to a fever pitch in order to recover their children. 


What matters is not the number of expensive therapies you throw at your child, but the quality of the interactions you give him or her. Being with them, interacting with them, talking and playing with them while working on mastering rudimentary skills requires a bit of know-how, but even more importantly, it requires time and commitment. Parents who are willing to invest that time and effort with their children can make a huge difference in their children's and their own lives.

If parents were given basic information and the time with the appropriate therapists to work on tasks they could do with their children, stress could be reduced by instilling a sense of capability to deal with the challenges at hand.


Part of that would include looking at the family dynamics, as well. Altiere and von Kluge found, somewhat unsurprisingly that :


Individuals who rated their family as highly cohesive implemented effective coping behaviors most often in difficult situations.
They also found:
Another significant finding was that individuals who rated their family as enmeshed, connected, or separated were significantly more likely to use reframing (viewing conflict or crisis in a positive manner) to cope with difficult situations than disengaged families.
Working to find the silver lining, so to speak, is easier if we feel we have others with us to support us, if we feel we are not alone.

Pottie and Inghram (2008), in looking at various coping mechanisms in parents with children with autism found that:
On average, after accounting for personality and contextual factors, higher levels of daily positive mood were predicted by Problem Focused, Social Support, Positive Reframing, Emotional Regulation, and Compromise coping. It was also found that decreases in daily positive mood were associated with Escape, Blaming, Withdrawal, and Helplessness coping" (p. 861)

Practical implications for this would be for diagnosticians to also assess the parental coping mechanisms when an autism diagnosis is made for a child and to work with parents to implement effective training on more adaptive coping mechanisms.

It's not enough to hand parents a confusing and often scary diagnosis. Those who do so need to arm parents with the right information and with the right tools. Parents shouldn't have to ever feel that autism is an "empty suitcase," "an empty guidebook," or "a thief." Far worse than this one mother's belief that autism was this and worse were the comments that cemented this opinion, not only for this mother writing and those commenting, but the potential that parents dealing with a brand new diagnosis had to read things like this:

...has been suffering a long and sometimes horrible journey with her child due to the HORRID DISEASE of Autism. YES IT IS A HORRID DISEASE for so many children and their families.

Not every parent will be reached, as all too many people prefer to dwell in darkness and misery and to bring along as many people as they can with them. I'd venture that the AoA loyalists and people like them posting to various bio-med and mercury militia boards are for the most part unreachable. They are not interested in learning more adaptive ways of coping. They certainly aren't interested in reframing their situations.

So, we can acknowledge that we will not reach everyone without giving up hope of being a light for those beginning the journey with their children. We can focus on helping arm others with the tools to cope adaptively so that their lives and their children's lives will be the better for it.

References

Altiere, M., & Kluge, S. (2009). Family Functioning and Coping Behaviors in Parents of Children with    
            Autism. Journal of Child & Family Studies18(1), 83-92. doi:10.1007/s10826-008-9209-y.

Pottie, C., & Ingram, K. (2008). Daily Stress, Coping, and Well-Being in Parents of Children With Autism: A Multilevel Modeling Approach. Journal of Family Psychology22(6), 855-864. Retrieved from Academic Search Complete database.


Sabo, R., & Lorenzen, J. (2008). Consumer Health Web Sites for Parents of Children with Autism. Journal of Consumer Health on the Internet12(1), 37-49. doi:10.1080/15398280802081436.

25 comments:

kathleen said...

yes! It is arming people with the right tools..A fsmily just going through diagnosis has a better chance of hitting the woo on the internet than the positive sites.
I was just at a site where there was discussion of Jenny McCarthy-and how wonderful she was for shedding light on autism. I tried to point a few things out (nicely, I swear!) and it was like talking in the wind.
So I do believe it is how a family perceives itself to be-before diagnosis that is going to shape how they deal with diagnosis.
I also think a lot has to do with what ones idea of being a parent is. Whether one thinks that parenting is about the child-or if they think parenting is about what the child is to them. sigh...
Excellent post btw. :)

Arthur Golden said...

Since Ms. Wombles is opposed to censorship, it must a mistake that a previous blog entry ends with a personal attack on me by Clay and new comments to that blog entry have been disabled less than 12 hours later. I hope this comment can be moved to the appropriate blog entry so people receiving comments there by email can be informed. I find that my comment is too long so it will have be posted as more than one post. I believe that Ms. Wombles has made some factual errors in her comment #120 to that blog entry and the following is the beginning my direct response to Ms. Wombles, written before I tried to post it:

Ms. Wombles,

21. Please carefully read the following information:

a. It is more appropriate to state that ASAN neither accepts nor rejects Facilitated Communication.

This statement is in direct response to the following, in which I did not rely on my fallible human memory but checked the written documentation:

You wrote in comment #120 posted March 21, 2010 3:39 PM (amended 9:53 pm):

"*I deleted my prior comment, as I made an error on ASAN's acceptance of FC.

Here is my comment again with that portion appropriately amended:
...
**amended** For the record,the acceptance of FC as an appropriate treatment/therapy/communication modality is against all accepted scientific evidence and is one I personally do not support. It's one I hope that ASAN will continue to reject."

Your amended comment #120 came after Meg Evans of the Board of Directors of ASAN, identified in these comments by another person as a lawyer, wrote in comment #118 (since deleted by the author) posted on March 21, 2010 8:36 PM :

"Kim, to the best of my recollection, ASAN has never made any public statements regarding facilitated communication. Perhaps you were thinking of the Autism National Committee instead?

You can find ASAN's policy positions on health care and therapies here."

In your now deleted comment #116 posted on March 21, 2010 3:39 PM you wrote:

"For the record, ASAN's acceptance of FC as an appropriate treatment/therapy/communication modality is against all accepted scientific evidence and is one I personally do not support. It's one I hope they amend."

The comments still include the following paragraph contained in your comment #11 posted on March 17, 2010 7:04 PM :

"One area that I am aware of where I disagree with ASAN relates to FC. I disagree with the promotion of facilitated communication; scientific evidence more than convincingly demonstrates it is not reliable and is instead facilitator driven."

If you go to ASAN's policy positions on health care and therapies, it contains the following statement:

"Many therapies and products for Autistic children and adults are helpful and should be made more widely available, such as physical therapy, speech therapy, occupational therapy, and augmentative and assistive communication technology."

[b & c to be mosted next]
Arthur Golden of Jerusalem Israel

Arthur Golden said...

[continuation of my comment as described there]

b. I do not understand the rational basis for the use of the word "all" in your statement "...the acceptance of FC as an appropriate treatment/therapy/communication modality is against all accepted scientific evidence..." I have no idea about your personal knowledge of the scientific evidence on the acceptance of FC. I do know this use of the word "all" in connection with "scientific eveidence" is very common in many statements found on the internet, especially from persons identified as skeptics. Did you just rely on these numerous statements repeated so often by others or do you have personal knowledge of the scientific evidence on FC? As an example, below is some information of my personal knowledge of the scientific evidence on FC.

Since I have had access to the internet in 1997, I have been obsessed with researching information on Facilitated Communication, including extensive information about "scientific evidence" for the acceptance of FC. I must admit that I do not understand your use of the modifier "accepted" before "scientific evidence" but I do know that "scientific evidence" for the acceptance of FC is published in peer-reviewed scientific journals and I know there are many such articles which I have read in full, not just the abstracts. I also know there are articles for the acceptance of FC in peer-reviewed scientific journals in foreign languages such as Italian and Spanish which I cannot understand the foreign languages. By the way, I first became aware of the term Facilitated Communication when Professor Emeritus Gunnar Dybwad of Brandeis University sent me in September 1990 a photocopy of the August 1990 article about FC (but not formal scientific evidence) of Professor Douglas Biklen published in the Harvard Education Review. My own son Ben first tried out FC in February 1991 with speech therapist Marilyn Chadwick from Syracuse University.

My personal experience, not just information from reading peer-reviewed articles, includes personally knowing the lead author of a 1995 peer-reviewed article for the acceptance of FC - Dr. Michael Weiss, PhD in psychology from Harvard University. Dr. Weiss personally administered an IQ test to my son Ben in the summer of 1993 using FC which showed at least normal intelligence, in contrast to standard administration of the same WISC IQ test by Dr. Mary Cerreto in December 1991, which resulted in an IQ score of about 25. Another named author of this 1995 scientific study of FC is Dr. Margaret Bauman, who recently became the head of a new health clinic for autistic adults at Massachusetts General Hospital of Boston, after receiving a grant from the Nancy Lurie Marks Foundation which from memory I believe was about thirty million dollars. I also know the main subject of this case study in the 1995 peer-reviewed article, then 13 year-old Kenny Affonce Jr., because I was asked to go to his school before the article was published to be his facilitator to discuss his theological questions, done in the presence of his individual teacher Branda Silva, who about that time was awarded Teacher of the Year at the national convention of the Ausitm Socity of America.

c. I have in my thoughts several other points I wish to make in direct response to your comment #120 but I need to get ready to leave for the morning. I do not know when I will have time to do so, but it may be appropriate to receive feedback from you and others on the above sections a. and b. before doing so.

Arthur Golden of Jerusalem Israel

KWombles said...

@Kathleen,

Yes, I think so. Who we are before we deal with the diagnosis shapes how we deal with it.

For example, someone who has no grounding in critically evaluating claims and who was into altmed before is more likely to turn to the woo after.

Folks who didn't cope adaptively won't all of a suddent cope adaptively when hit with adversity.

KWombles said...

@Arthur,

I don't know what tricks you think blogger has that it can move comments to where you want them to go.

That thread is closed and it will remain closed. It's my blog and it's my decision. You were using it to engage in a dialogue with Clay that had nothing to do with Ari Ne'eman, just as you are using this thread to discuss something that has nothing to do with the content of the post.

I did not read your comment as a response to me, and of course it was written before you posted it, if for no other reason than the physical impossibility of it being written after you hit post.

I asked that the topic be dropped. Whether you wrote it or not before I commented is irrelevant as you'd seen my comment before you posted, since you amended it to note that.

I amended my post based on information from Meg that ASAN did not have an official position on FC.

Whether they have a practical position on it seems to be different. It may have more with being inclusive and allowing more perspectives to be heard, you know, an avoidance of censorship.

I'm in no rush to discuss this with you, so by all means take all the time you need to get back to me.

Arthur Golden said...

Thank you for your clear response to provide closure in this matter.

Art

Clay said...

@ Artie - In response to your prefatory remarks before going into 21(a), where you whined about a personal attack by me, I say that I was only making an accurate description, see:

putz
"obnoxious man, fool," 1964, from Yiddish, from Ger. putz, lit. "finery, adornment," obviously used here in an ironic sense. Earlier in slang sense of "penis" (1934, in "Tropic of Cancer")

I think you should at least give me some credit for attempting to use your own language to communicate with you.

As discussion of FC was inappropriate on the previous thread, it's also inappropriate here, being way off-topic.

I happen to know that Ms Wombles is crafting a post dealing with your subject, and when she does, then one of the subjects of your obsessions will become appropriate. Seeing as you expect people to wait for weeks or months for your replies, I suggest you put off your attention-seeking efforts until she does.

BTW, my Muslim name is Salsal Sabr Adamah. I liked the meanings.

Arthur Golden said...

Clay,

I am gravely concerned about your previously amazing memory, but Ms. Wombles has reasonably requested that I communicate with you on your blog and not on her blog. So please send me the URL or live link to post a message, which I have decided to do urgently because I am so gravely concerned about you.

Art

Clay said...

@ Artie - Please try to understand, (and excuse the Americanism), but -
BITE ME!

Louise said...

Well hells bells and Dionne Warwick wept! Boy Howdy Miss Kim! I WAS gettin a strange tingley like feelin..thinkin there was an ominous cleansin a sorts goin on..but it was just Mama H. She done ate herself a bowl a that Kashi Go lean..OOOHEEEE! Hazel crack corn an I surely do care!
Now what in tha hell is goin on here. Ya got folks a commentin an a yellin an NEEDIN ta git in tha last word an such..and it aint got nothin ta do with what all your talkin about! I had ta go back an read me some. Telepathy?! Fascilitated communication?! Well don't that just put a tingle in my ta ta's! I do a little fascilitatin an communicatin myself! Only I does it in Vegas! A fella communicates an I fascilitate! YEE HA! He don't need no help with pointin anything neither! Must be my psychic bosoms!
They bounce an tell all!
Ya wrote a mighty fine post here Miss Kim. I guess some folk is just hoping they can tell y'all that telepathically.

Arthur Golden said...

1. After stating it is a matter of public record on the internet that I do not believe in the existence of psychic abilities, I have pushed the reset button.

2. In the very first paragraph of this blog entry, the fourth sentence states:

" It's my personal belief that sites that cater to the negative and to the woo, all while making false promises of cure and recovery, are dangerous to the emotional well-being of both the parents and the children. "

3. Having lived in Israel for the past 14 years within the Chareidi community, I really do not know what you mean by WOO! I promise I will not discuss WOO within this blog entry, but I would appreciate knowing what WOO means so I can properly understand this sentence and so I can try to rationally discuss the subject of WOO when it is the topic of a blog entry.

Arthur Golden of Jerusalem Israel

Clay said...

Artie said:

"I really do not know what you mean by WOO!"

Results of 2 second Google search:
http://www.skepdic.com/woowoo.html

For a retired lawyer, you don't seem very bright. And as for getting in touch with me - think about it - you know how.

Click on my name there, go to my blog, make comment. It can be public or private, as you please, and as I please, whether or not I publish and/or answer it.

Now wasn't that easy? Did you attend a remedial law school?

Arthur Golden said...

Ms. Wombles,

4. When I asked "what you mean by WOO" (3) I meant you personally, not the results of a Google search. In this very blog, you note how unreliable information from a Google search can be, with your important example of parents searching for information about autism. Since it seemed reasonable to one of your readers to not understand what I meant, I would like to express my appreciation to that reader for pointing out that my request might be understand by you differently than I meant. But you have reasonably requested that I respond to that reader on his own blog and I will proceed accordingly. I do wish to note that I expect that a Google search of me would readily disclose that I graduated Harvard Law School in Cambridge, Massachusetts USA in 1971.

5. I do not wish to engage in any further discussion on this blog entry about Facilitated Communication (FC), but I feel I need to explain that it is because of FC that I have requested to know what you personally mean by WOO (4). When I first learned about FC in 1990, one prominent FC promoter then and to this day is Australian human rights advocate Christopher Borthwick, who when I first started to use the internet in 1997, had a prominent presence and still does to this day. I personally know that Christopher Borthwick believes there is credible scientific evidence for the acceptance of FC and it should be noted that since I first heard of him, he was and is the significant other to Dr. Rosemary Crossley, the original FC promoter. Yet I personally know that Christopher Borthwick states he is opposed to WOO and for example emailed me that anyone who experiences or believes in telepathy is delusional and there is no scientific evidence for the acceptance of telepathy.

6. I amend (3) to add the word personally to now read "I really do not know what you personally mean by WOO!" I look forward to receiving your personal answer so I can properly understand the sentence quoted by me in (2).

7. Then, I hope to have the time to post a comment about raising a child with autism before the internet, noting that my son Ben was already 25 when I gained access to the internet in 1997. I will note now that I think IDEA was better implemented 25 years ago, which was well before the internet. Also, it is often stated that many things in Israel are 25 years behind the USA, but for raising a child with autism that might be a good thing. Lastly, almost all Chareidim in Israel do not access the internet, which also might be a good thing. And Chareidim in Israel do not have television, do not go out to movies and scrupulously avoid most forms of Western entertainment. Maybe that is why Chareidim often have very large families (although not aborting fetuses with Down's adds some more).

Art

Louise said...

Well hells bells don't that just put tha icing on tha dumbass cake! Mr. Golden y'all is like one a them folks who pretends ta ask a question, but instead a LISTENIN to tha response, you is already formulatin in yer head what all ya want ta say. Ya sure do like ta hear yerself talk dontcha?
Y'all want ta know what woo is? Well as it seems ya have tha time-why dont ya read through this blog..y'all should figure it out. Or better yet-google it.
Miss Kim, I hope your Mama gets back on her feet real soon.

Arthur Golden said...

Ms. Wombles,

8. After sending 2 comments where the first sentence of the first comment states "I have pushed the reset button" (1), I am concerned that you have not responded in over 24 hours since I posted the 2nd comment and it is over 40 hours since your last comment. If I understand Louise, your mother is ill. If I understand correctly, I wish your mother a speedy and complete recovery and I will patiently wait until you are able to reply. I am signed up to receive emails of any comments to this blog entry.

Art

KWombles said...

Arthur,

It says at the top of the blog on the right that my mother is in the hospital and that I won't be tending to countering. It also says to feel free to look around at articles you might have missed.

Thank you for your well wishes regarding my mother.

I'm glad you've hit the reset button, but I'm not at all sure what that has to do with me. You're free to read through my blog at your leisure; I'm pretty sure that most questions you have regarding my positions or how I define things can be answered in that way; there's a lovely search button.

Arthur Golden said...

Ms. Wombles,

9. I pray that your mother be returned to good heal, I as try to do for any person when I find out that person is in the hospital. I thought it was a good omen that you were able to reply to my comment early yesterday morning your time, and now I read that your mother is out of the hospital.

10. I must admit that your reply and previous ones really concern me, recognizing it is most likely how I respond to social interaction. Although I am swamped with Pesach cleaning, I feel an obseesive need to express my concerns and I may try to do so in the next several hours.

Art

KWombles said...

Arthur,

I have no idea why my responses are so concerning to you, but I'm pretty sure there are few areas where we will have agreement, and that's not likely to change.

I've written hundreds of blog posts, many of them research based. Many of them clearly define woo and what is not. I see no reason to redefine things or elaborate here when people have at their disposal what is no doubt over a hundred thousand words already available to them.

Corina Becker said...

never a dull moment around here, eh Kim?

Kim, good post, and I hope your mother is alright.

Also, I think that Mr. Arthur Golden is getting comments made by Clay and Louise mixed up with comments made by you. A possible way to clarify things: Clay and Louise are not Kim Wombles. Please re-examine the author of comments before commenting.

Arthur Golden said...

Ms. Wombles,

11. I look forward to having the opportunity to reply to your brilliant insights, but I was so swamped by Pesach cleaning that I was not able to do so despite how obsessive I felt about it. Since I am an excellent speller, the two spelling errors in my last comment were because I was so rushed (heal instead of health, obseesive instead of obsessive) and maybe when I wrote "previous ones" I should have been more explicit that I meant the brilliant insights of others, including Clay and Louise, and not just you. Of course, as you reasonably requested, I will not reply specifically to Clay on your blog but I will try to do so on his blog, but I should be able to reply directly to Louise here on your blog unless you tell me how to reach her otherwise.

12. My last comment made no mention whatsoever of WOO and although I cannot prove to you what I have been thinking, my concerns about your brilliant insights are much more general than specifically about what you mean personally about WOO. As you first suggested, I intend to try the lovely search button before I discuss WOO again. I do not understand why you brought up the subject of WOO before I had a chance to follow your first suggestion. Before following your first suggestion, bli neder I hope to post a comment within 24 hours about how "your reply and previous ones [including other commenters] really concern me."

Art

KWombles said...

Art,

As long as your comments to Clay are on topic, I don't mind if you post to him here. But if the intent is to have a private conversation about things other than what the overall conversation is about, you should do that elsewhere.

Feel free to take your time in getting back to me. It's not like I'm going anywhere. :)

Arthur Golden said...

Ms. Wombles,

13. Your reply and previous ones [including other commenters] really concern me:

a. You and your commenters seem to me that you (in the plural unless otherwise stated in this comment) think you know a lot about me while I believe you know very little about me. On the other hand, you expect that I know a lot about you while I believe I know very liitle about you. You have a typical Western mindset while I have a completely different mindset, which is not even typical for the Chareidi community in Israel, although close to it. I do not have your typical Theory of Mind. A good example of what I mean is in a more recent brilliant insight of yours in which you state "I'm pretty sure there are few areas where we will have agreement, and that's not likely to change." Since I know so little about you, I could not make such a statement. However, after 6 years of reading so much about Michelle Dawson, starting with the Misbehaviour of the Behaviorists which I publicly signed as an endorser (and I never disagreed with her for the next 4 years), and including obsessively reading her TMoB since January 30, 2008 including browsing back posts, I would state that I am largely in agreement with Michelle Dawson, except for a very few issues which I have mentioned on your blog. Unfortunately, when I questioned her about a couple of those few issues, I was subjected to strong mistreatment since February 4, 2008.

b. I realize I might be having delusions, including persecutory delusions. According to modern psychology, and the ancient wisdom of King Solomon from 3,000 years ago, it is human nature for a person to see a reflection of oneself in the behavior of others. This may be the reason I see persecutory delusions in others.

c. I feel you are subjecting me to bullying, abuse, ridicule and denigration. In other words, you are subjecting me to mistreatment. It is mistreatment of an autistic (see below).

d. Living in the Chareidi community in Israel since 1996, I do not have access to television and I did not see Jerry Newport discussing Asperger's Syndrome on Sixty Minutes in 1997, as did Clay Adams, who then sought and received an official diagnosis of Asperger's Syndrome about 1999 at about age 53. However, I have had access to the Internet since 1997. Please note that my son Ben was given an official diagnosis of Autism in the 1970s as a young child and clearly meets the narrow criteria of DSM-3 of 1980. When researching Autism on the Internet because of my son, I discovered that DSM-4 in 1994 greatly broadened the definition of Autism Spectrum and there were already many persons on the Internet with a diagnosis, both official and self-diagnosis, who were very similar to me. I soon realized that I was on the Autism Spectrum but being a very private person and for other reasons, I have not been too public about my self-diagnosis. However, there are a number of mentions of my being Autistic made on the Internet over the past 13 years. After what has happened on your blog in the past 10 days, I have decided to go public about being on the Autism Spectrum as have so many others. Even though I have thought about much more details about being on the Autism Spectrum, I do not have time now to type up any further explanation at this time, but bli neder I plan to do so as soon as I have time. In the last day of Pesach cleaning and then celebrating the major holiday of Pesach, I will not be able to post another comment here for about four more days, no matter what brilliant insights are put on your blog.

e. Although your reply and previous ones [including other commenters] really concern me, I wish to publicly thank you for giving me the push to come out of the closet about being on the Autism Spectrum.

Art

KWombles said...

Art,

You address the comment to me, but then seem to use a plural you to speak to all those who have commented to you here on this blog and accuse us of bullying you without ever specifying who, which is unfair at best.

I fail to see how I could be bullying you or persecuting you since I have not sought you out, followed you around, or been anything other than polite while noting we are unlikely to have many areas of agreement(since you acknowledge your long-time internet presence--you leave a sufficiently wide trail of postings to ascertain whether one is likely to be in agreement with or not).

I also fail to see why you think communicating here, especially in light of your last comment, will be at all productive, especially since you've decided you are being persecuted. Plus, stating that we know little of you but then following it with "You have a typical Western mindset while I have a completely different mindset" seems to be the pot calling the kettle and inconsistent as all get out.

It would be my earnest recommendation that since you find it such an unpleasant and concerning experience to post here that you move on. It makes no good sense to place that concern on yourself when you have every option to simply not look here. I can assure you we won't be discussing you in your absence.

In all fairness, you may state YOU don't believe in telepathy but you don't address previous writings elsewhere that would indicate that you believe your facilitation of your son is indeed tantamount to that, if not that in exact detail. I know, telepathy is the wrong word.

I found a fascinating site while looking through the internet recently regarding facilitated communication and would like to quote this passage:

"The real explanation seems to be that these handicapped people have the ability to scan the memory banks of the facilitator to search for the answers for the questions, which they are asked. Since the above mentioned patient didn't know the brand name of the watch or the store where it was purchased he searched for answers in the mind of Dr. Calculator who was his facilitator. This explanation is also confirmed by the phenomenon that frequently when researchers asked the patient one question and asked his facilitator a different question, the patient pointed to the answer to the question, which the facilitator had been asked."

This is in a nutshell an example of woo.

KWombles said...

The author of this piece continues in a later paragraph: "Many FC users have described this process. Ben Golden a 25-year-old, who is autistic and nonverbal, explained in a facilitated message that it is the physical contact with the facilitator which enables him and other FC users to be instantly literate in any language known by the facilitator as well as to access the deepest memories of the facilitator."

http://www.goldenfc.com/articles/sitzman/rrofc.htm

The site http://www.goldenfc.com/archive/ --also provides sufficient information for me to conclude I know enough regarding your beliefs concerning how communication is occurring between you and your son (or how your son believes communication to be occurring) to reach the conclusion that we pursue different paths.

I assure you that I didn't make the statement lightly or without at least getting a fair sense of what your past comments indicate about your beliefs.

As to your b., I'm not having any delusions of persecution, and I'm fairly certain that no one else who has commented to you here is delusional.

Regarding your c., "I feel you are subjecting me to bullying, abuse, ridicule and denigration. In other words, you are subjecting me to mistreatment. It is mistreatment of an autistic (see below)," who and how precisely? No, never mind. See above my recommendation that you choose not to come back here if it's so troubling to you; you have my guarantee we won't discuss you in your absence.

Ideas are fair game. Placing your words out there for people to read means you subject yourself to people disagreeing with you. Some will focus strictly on the ideas contained and argue that they are wrong and why. Others will not be so kind. It isn't bullying to argue against your ideas, nor is it abuse or denigration. And if your ideas are ridiculous, that's your problem, if someone notes it, although I don't see where anyone ridiculed you, but perhaps I missed that--it's possible I did not read all the comments.

Arthur Golden said...

Ms. Wombles:

B.14. Thank you for your detailed reply to most of my concerns expressed in (13) noting you did not reply to (13.d.) about my self-diagnosis on being on the autism spectrum. At this point, I would like to mention that one of your previous brilliant insights was contained in comment #120 in the previous blog entry:

"I may have to amend my terminology for comments to reflect that they are not all brilliant insights."

However, you have stated that "I don't see where anyone ridiculed you" so I must have been mistaken to have taken personally this brilliant insight of yours. I see no need to comment further on any other brilliant insights posted by others, whether or not you read them because an objective observer can judge on their own.

B.15. I do feel that there are major misunderstandings between us. Part of the problem may be that "goldenfc.com" is a website put up by a computer savvy friend using now old technology back in 1997 (with information from my son Ben facilitated with 3 other people in 1994-96) and last updated in the first half of 1998 to include additional articles from Rabbi Yechiel Sitzman of the Chareidi community in Israel. If you accept that the statements attributed to my son Ben sent by email in 1997 were not my conscious ideas, which is my sincere belief, then there is almost nothing on this over decade old website that reveals my own ideas. Even if I agreed with Rabbi Sitzman or my son, which is not stated on the website, over the following decade I have revised and even retracted my positions which may be reflected in this outdated website. The website has not been revised because I do not know how to do so and since the information does reflect the position of Rabbi Sitzman and my son in the 1990s, I felt it was appropriate to leave up as is. I am sorry if this outdated website misled you. I wonder if you found my own writings posted on the internet in this new century, mostly on yahoo!groups. However, discussing any misunderstandings within this blog is now a moot point because you have posted two blog entries on Facilitated Communication and I will move on to these two blog entries of yours on FC.

B.16. As you stated in your last brilliant insight on this blog entry posted 4 days ago:

"Ideas are fair game. Placing your words out there for people to read means you subject yourself to people disagreeing with you."

So I look forward to doing so to your ideas and words in the two blog entries on FC, after I informed you 4 days ago that due to Pesach cleaning and observing the holy days of Pesach, I could not post any further comments to your blog for these last 4 days. I am still optimistic that the misunderstandings between us can be largely cleared up in this forthcoming discussion about FC.

Art