Wednesday, January 23, 2013

Why does Shannon Des Roches Rosa stick up for the neurodiversity movement?

I've just read an interesting article in that ironically named blog, The thinking person's guide to autism,  that seems to stick up for the neurodiversity movement, which claims to be about human rights, but also states that autism is not a disordered way of being but a different way of being and whose numerous proponents have even stated on occasion that autism is not a disability.

Her article is in response to a piece written by Amy Lutz, questioning how well facilitated communication works as well as how much the neurodiversity movement truly represents autistic people.  Most of Lutz's article is nothing new for those denizens of autism blogs who know well the arguments against neurodiversity and the story of Amanda Bagg's questionable if not improbable status as a true member of the autism spectrum.  Ergo, the details of the article are not worth repeating here, though the interested reader can read the article I've linked to.

Ms. Rosa questions the reasons that Lutz would attack the ND movement.  Conversely, I'd like to ponder the question of why the author defends the neurodiversity movement.  Accordingly, I'd like to come up with what I think may be a plausible explanation for her behavior.

Des Roches Rosa claims that Lutz was attacking disabled people for appearing less disabled than her offspring.  This did not seem to be the case.  Though she did not dispute that Amanda Baggs may be disabled, she points out Baggs unusual clinical history for an autism diagnosis and the questionable claim she was diagnosed with autism at age 14.  This is certainly a legitimate talking point as Baggs, at least in the past, was a poster child for the ND movement.  Also, she gives Ari Ne'eman as an example of one of these disabled persons.  This is in spite of the fact that in the past i've documented that Ne'man has stated that he himself is not disabled.  So I'm not sure who the author is referring to as disabled.

Most interesting of all, she states that neurodiversity is not only the province of very high functioning (or not even disabled) autistics/Asperger's individuals, but for parents of relatively low functioning children as well.  She gives herself and Kristina Chew as examples.

Though I don't know a whole lot about Ms. Rosa, I am quite familiar with Ms. Chew, as I've read numerous blog entries of hers and have seen her on Good Morning America.  This is a woman who has stated she opposes curing her son's autism, yet has placed him in ABA programs with the apparent goal of "normalizing" him.  She has advocated for the IDEA law and has advocated for services on his behalf and seems to have a misunderstanding of the law's intent and the supreme court's decision in the Rowley case and insists her son receive the "best" services, though he is not legally entitled to these.  She has also made the strangely inconsistent statement to me that she is satisfied with her son's functioning level.  Not only does one wonder about an explanation for Rosa's defense of ND in general, but Ms. Chew's behavior in particular.

As a former consumer of psychoanalysis for more than ten years in my childhood, I believe I have the answer to these intriguing questions---Freudian defense mechanisms.  These include reaction formation, denial, projection, etc.  though I've written about this topic in the past, I believe a recap is in order.

The first of these defense mechanisms is denial.  Diane Sawyer in the Good Morning America show that Ms. Chew was on aptly described neurodiversity as a beautiful way of justifying heartbreak.  Chew and I suppose Des Roches Rosa are possibly in denial of having children who are impaired.  They can't cope with the hurt and the pain so they use this as a psychological defense mechanism.  This is to deny that there is anything wrong with their children.  This goes with saying that autism is not a defect that needs to be cured, but that progress can be made and the child with the correct accommodations can function as well as a normal kid.  This is a denial of reality but perhaps it makes these mothers feel better about their offspring.  Others are displacement and projection, thus getting angry at anyone who wishes a cure for their child or who has something like the ransom notes thing that clinic in New York had.  Most intriguing of all is reaction formation, taking something you hate and and claiming to love it.  Instead of hating autism, they use this defense mechanism to celebrate it, to claim that Gates and Einstein were autistic and that autism is a great thing and not a bad thing and it can be worked with.

Perhaps these defense mechanisms are why Chew makes the outlandish statements that she does and why Des Roches Rosa would stick up for a convoluted movement like neurodiversity. 

17 comments:

Anonymous said...

They sound like they are in denial and both of their kids are very severe. Sad really. Chew and her husband are ruled by their son and foster inappropriate behavior by allowing him to take one hour showers, destroying the house by throwing objects yet not making him clean any of his destruction up off the floor and allowing him to rule the family schedule constantly. The excuses for his behaviors appear endless. I call these the babysitting, stick your head in the sand parents.

If Chew and DeRosa think their kids are going to end up like an Ari N. they are living in a delusional world.

Anonymous said...

Unfortunately these parents are easily brainwashed. Diary of a Mom (blog), Jessica Wilson of Newton, MA., writes on her blog that she met with Ari this past week and it's clear she is totally sold on his bag of BS for her daughter Kendall. Her gushing borders on fanatical.
I believe these parents are all in for a rude awakening in about another 5-10 years!

Foresam said...

I think the original cast of wackos from Neurodiversity were some very good liars. These dumb women who followed them are just plain stupid.

Roger Kulp said...

This made me go back and reread some of your older posts.I get it now,about neurodiversity and denial.It's probably the leucovorin,my mind was so messed up before I started using it,there as a lot I didn't understand.If Amy Lutz reads Harold's blog,she probably reads yours too.If you ever get an offer to write an article for a site like Salon,please accept it.This needs to be seen by a wider audience.

I was surprised Ms.Lutz did not come out and call Amanda Baggs a fraud and a con artist.She has pretty much been exposed as such.
ASAN's statement on the Fein study applies here too.This says it all.

Furthermore, by teaching Autistic children and adults that “recovery” – pretending to be something we are not – is the “optimal outcome” they can achieve, we send a profoundly damaging message to Autistic people, our families, and the public at large. Autism is a natural part of the human condition and not something to recover from or eliminate. The goal of autism research and service provision should be to create happy Autistic people, not to encourage ‘passing for non-Autistic’ without regard to the impact on our quality of life.

This from a group made up of self diagnosed "autistics".

Anonymous said...

Thanks for this post. As an autism mom, I feel a lot of empathy for parents in denial or otherwise engaging in elaborate verbal and emotional acrobatics to deal with their feelings. (I've certainly done it.) I regularly read Shannon Des Roches Rosa's blog, and I find her thoughtful and interesting -- and an important voice in the community, even if I sometimes disagree with her. I feel the same way about Amy Lutz. I myself am confused by the semantics of the debate about neurodiversity. Yes, of course, we want the world to be populated with a diversity of minds and ways of thinking, but a person (no matter how s/he thinks) still needs be able to function in that world. If the way a person's mind works makes it difficult for him/her to live an independent, productive life, we have a problem that needs to be fixed.

jonathan said...

@Roger. I've submitted stuff to Salon before and they rejected it. Not sure if any of those are interested in publishing me, but certainly would not turn them down, particularly if I could make some money. Things are really bad in journalism now and much harder than ten years ago or so. Of course, I was published in L.A. Magazine, so I got a paid publication right when things were bad.

I don't know if Ms. Lutz reads my blog or not, very possible she did, but I guess I didn't warrant a mention in her piece, but I'm glad an anti-neurodiversity article was published that got a lot of exposure.

I'm not sure if there are any smoking guns concerning Ms. Baggs, though I agree her story is highly suspect. When I first published neurodiversity just say no she claimed that she had a speech delay before age 3 then recovered her speech, then lost it again due to catatonia and she cited a publication from Lorna Wing showing that in rare instances catatonia could occur in autistics.

ASAN's crude statements may require a separate blog post, which I may or may not write.

Anonymous said...

@ Anonymous-Shannon De Rosa, "an important voice in the community"? Really? Well, as long as you think exactly like her and don't go down the road of vaccine damage, biomed, etc. She regularly belittles that subject and anyone associated with it. Shannon is a mean spirited bitch to put it bluntly and she would be the LAST voice, as a parent, that I would be listening to.

Anonymous said...

@Anon-one more thing-Shannon De Rosa has also openly admitted on her blog and elsewhere that she employed this monster to babysit her son for years and seems to be defending her until she is proven guilty. Unless many people are lying at the school this woman sounds like an abuser.
So, to think that Shannon, who clearly has such a poor judge of character, is an important voice in the community is ridiculous.
I also think Shannon is not only in denial regarding her kid but clearly in admitting she made a horrible mistake. How can she know this Bogdis didn't abuse her son over the years as well? Will Shannon ever admit she's wrong about anything? I doubt it. Too much of a narcissist.

REDWOOD CITY -- Attorneys on Thursday set a December trial date for a Redwood City schoolteacher charged with slapping and kicking young autistic children in her class, a prosecutor said.

Alexia Bogdis, 44, of Millbrae, faces nine misdemeanor abuse counts stemming from allegations leveled by teachers aides who worked in her classroom at Roosevelt Elementary School. They said she assaulted two 5-year-old boys between December 2011 and January 2012, in some cases even withheld food and water from the children, prosecutors said.

Bogdis pleaded not guilty to the charges and has asserted her innocence. She is out of custody on $15,000 bail awaiting the Dec. 17 trial date.

Bogdis' arrest in February set off an investigation that concluded her aides did not report the abuse allegations immediately, as they are required by law. Six workers were disciplined, though the district declined to specify the reprimand.

Nadia Cortez, one of the victims' mothers, has said she had to hospitalize her son because of the alleged abuse. She has also filed a $1 million claim, which is the precursor to a lawsuit, with the Redwood City School District that names Bogdis, administrators and teachers aides as defendants.

Anonymous said...

She can vouch for the character of a woman like this? God help her kids if this is the type of individual she trusts with them.


Shannon Rosa
2:33 pm on Saturday, February 4, 2012

"Alexia worked with my son for several years. I do not know the specifics of the incident as I have not spoken to her or anyone involved, but I can vouch for her character."

Anonymous mom said...

Shannon Des Roches Rosa certainly does not mince words in expressing her opinion; I often find her painfully abrasive. (Although her opposition to biomed etc. is not just knee-jerk, but a result of "having gone down that road" herself, right?)

She is not alone in flinging verbal daggers in the online autism community, though. I have been flamed repeatedly by all sorts of people -- for asking what I thought were benign questions about the science behind some biomed approaches, for commenting on the Wakefield fraud case, etc., etc.

I like that TPGA does publish a variety of voices. By listening -- with a critical ear, of course -- to a variety of perspectives, I believe I have become a better-informed, stronger parent to my child.

Nevertheless, the primary point of my earlier comment was to note that I find the neurodiversity movement hard to understand and their language/rhetoric problematic.

PS @Anon - I don't know much about the abuse case you reference (other than what I read in Des Roches Rosa's blog), but I thought people were innocent until proven guilty in this country?

Anonymous said...

I think it's jealousy but Shannon and the other band of idiots would never admit that. Shannon did try diets and other biomed interventions and when her son didn't respond all of a sudden it was voodoo science and she has just ripped everyone else apart who was and is having success recovering their kids.
If her son Leo did recover she would be singing a different tune. Bitter and ugly describes her and her attitude.

Susan Osborne said...

Reading words like "idiots", "wackos" and "liars" to describe others with viewpoints that differ from there yours, it makes me very sad that there can't more respect within the autism community. Everyone is entitled to their beliefs, but the insulting name calling does nothing but fan the flames of discourse. Can't we all agree to disagree? Judge all you want, but your opinion is your opinion not fact.

Anonymous said...

Susan Osborne thank you for posting your comment. Thumbs up!

Anonymous said...

Frankly I am very surpised De Rosa hasn't been diagnosed with autism herself (unless she has and has not talked about it.) She is either on the spectrum or just simply socially inappropriate, narrow minded and strange. She's a homely little fat woman who seems angry at the world. She has publically written in the past (on her blog and elsewhere) about giving her first son up for adoption when she was a teen and now the kid's adoptive father will not allow her to have anything to do with him. Who can blame him? I wouldn't let my kid within 1,000 miles of this weirdo. I agree that she is simply an angry, bitter bitch who lashes out very inappropriately at people who think differently than her.

Julia said...

"...the story of Amanda Bagg's questionable if not improbable status as a true member of the autism spectrum..."
So, Wikipedia has not done their legwork on Amanda's diagnosis? Is Wikipedia a necessarily biased or inaccurate source? I know people like to joke about Wikipedia because there are many instances of people "editing" articles highly in favor or against an issue or person, but those biased edits are corrected quickly and issues with accuracy or disputed statements are discussed in the "talk' or "history" sections off the article, right? Isn't that all out in the open? How many comments regarding neurodiversity proponents are out in the open on this blog or other anti-neurodiversity websites? My impression is that those are few and far between judging from active Facebook threads that have reasonable and conventionally polite content that seems to be pro-neurodiversity disappear. I sure have seen very angry neurodiverse comments around the internet, as well as highly moderated comments, but I see the otherside's POV out in the open and/or left as a comment despite it's rancor more often than the POV of the neurodiverse on sites that are known to be against their POV. I certainly can see there are other proponents of neurodiversity besides Des Roches Rosa and Amanda Baggs, yet these two seem to be especially attacked here for other things besides their POV. What have they said besides their POV that would deserve this treatment?

Julia said...

"[S]ocially inappropriate, narrow minded... and strange homely little fat.. weirdo...angry, bitter bitch." What does this have to do with her POV? Nearly all of the comments here cannot refrain from what people generally think of as insults. I think some people may feel threatened merely by a standpoint that has little, if anything, to do with what the proponent looks like etc.. At least it is good to give upset people a place to vent. When either side calls each other brainwashed.delusional wackos without any reasonable proof at the very least I see people who highly value conformity, are motivated to discredit the speaker rather than arguments, have a morbid fear of anyone slightly different than them, and would be considered prejudiced if their standards applied to appearance or anyone who has a different culture than them. Seems like high school all over again. Where are our uniforms?

maria Hrabowski said...

Until yesterday I didn't know who shannon DRR was. I made a mistake to respond to her blog. I don't mind that she disagreed with me, but I shocked me when she wrote this: “Krymarh (…)To make the message extra-clear: If you keep insisting that you *truly* understand the mindset of Robert’s mother, then that means your child is in imminent danger and, ethically, I should be using the power of the Internet to identify you and call CPS.”
I was in shock. You can read the whole exchange on her blog or in my post http://krymarh.wordpress.com/2014/04/28/shannon-de-roches-rosa/
I still cannot believe that. maria Hrabowski