A Brief History of Cassandra

As Tony Attwood begins his US speaking tour at a conference in Hartford, Connecticut, where he is scheduled to appear tomorrow, autistic rights advocates from ASAN New England are making it clear that the bogus concept of "Cassandra Affective Deprivation Disorder" is discrimination based entirely on neurology and that the autistic community cannot stand for that.

Because some people are still wondering what the controversy is about, I'm providing a brief explanation of the history and nature of this purported disorder, directly from a primary source: The Asperger Couple's Workbook (Maxine Aston, Tony Attwood; Jessica Kingsley Publishers, 2009).

Chapter 9 of the book (viewable in part through Google Books) explains that the term "Cassandra" comes from a Greek myth and refers to a prophet who was cursed with never being believed. You can find more information here about the Cassandra story and the actual characteristics that were attributed to Cassandra and Apollo in classical mythology. I've quoted a short excerpt (which is fair use under US copyright law) from the book below:


"This feeling of not being believed is typical of how many NTs feel when living with a person with undiagnosed Asperger Syndrome.

Over the years the terminology for the effect of Cassandra has changed. Before Cassandra it was referred to as the mirror syndrome by the Families of Adults Affected by Asperger Syndrome (FAAAS) and then referred to as the Cassandra phenomenon (Rodman 2003). Terminology has since progressed from Cassandra affective disorder and now more appropriately Cassandra affective. The Cassandra phenomenon was first made public at the Families of Adults Affected by Asperger Syndrome (FAAAS) conference in 2003 as Cassandra affective disorder (CAD) (Aston 2003b) and finally Cassandra affective deprivation disorder (CADD) (Aston 2007).

…CADD is the result of emotional deprivation due to the fact that one partner, affected by Asperger syndrome, is unable to provide the emotional support the NT partner needs to stay healthy within the relationship."


It bears repeating that no legitimate research has ever been conducted to support "Cassandra Affective Deprivation Disorder." Maxine Aston simply made it up. Although it's likely that she never would have gotten into print and would have been widely dismissed as a crank if she had made such claims on her own, her association with Tony Attwood over the years has enabled her to feed off his professional reputation and thereby gain an appearance of credibility.

And sadly, judging by Attwood's continued unwillingness to repudiate the crankery and bigotry of Aston and FAAAS, it seems he's a willing participant in their schemes.

Dowries, Trust Funds, and Independence

I read an article by Kristina Chew yesterday discussing new legislation in West Virginia that will give tax credits to parents who contribute to trust funds for their autistic children's support as adults. Autism professional Barbara Becker-Cottrill gave an interview discussing parents' worries about what will happen to their children as adults, stating that trust funds can provide families with a sense of security.

In seeking to help families who worry about their children's future, this legislation addresses what has become a widespread concern. Because today's society is so poorly adapted to the needs of its autistic citizens, a trust fund often can be a reasonable option. I once wrote a post on this blog suggesting that parents who were spending large amounts of money in pursuit of miracle cures would be much better advised to put that money into trust funds instead.

From a broader cultural perspective, however, the idea that it could become routine to create a trust fund for the lifelong care of every autistic child leaves me feeling very uneasy. Such a system would be based on the assumption that children labeled autistic could not become self-supporting. By characterizing autism itself as the sole source of the problems encountered by autistic people in our culture, this would divert society's attention away from the many areas where it ought to be focused—miseducation, discrimination, ignorance, and lack of suitable accommodations. These are not the result of autism, but of socially constructed prejudice.

The practical effect of such a system would resemble the old custom of providing a dowry for a daughter so that she would not be left destitute if her husband died. In those days, it was taken for granted that a woman was not capable of supporting herself. Being an independent woman, to the extent that it was possible to be one, meant having inherited money from a husband or other male relative.

For many of us in the modern world, it's hard to imagine that there was once a time when a young girl, simply because of her gender, was thought to be inevitably destined to a lifetime of never being able to provide for herself. That idea seems absurdly primitive now. And yet, there are many people today who see nothing wrong with making the same assumption about a young autistic child. As we celebrate Independence Day here in the United States, I'd say that it is time to give that assumption a lot more critical scrutiny.

Another Resignation at Autism Speaks

From Dr. Eric London.

Dr. Eric London has announced his resignation from the Autism Speaks Scientific Affairs Committee. London is the Director of the Autism Treatment Laboratory at the New York State Insitute for Basic Research in Developmental Disabilities. He is also Director of the New York State Autism Consortium and a member of the Autism Science Foundation's Scientific Advisory Board. He is the co-founder of the National Alliance for Autism Research (NAAR).

Dr. London's letter of resignation is below:

After three years of great hopes for Autism Speaks being the optimal vehicle to advance autism science and treatment, I regretfully and sadly must announce my dissociation from this organization, including resignation from the Scientific Affairs Committee.

Despite the very excellent work that Autism Speaks has done in the area of awareness and legal advocacy, there are many differences which I have with the organization, mostly concerning the direction and prioritization of the science program. There have been numerous decisions made which I believe have adversely impacted autism research and none of those decisions were made upon the advice of the Scientific Affairs Committee. The processes with which science decisions have been made have been contrary to my hopes and expectations when the NAAR-AS merger was effectuated.

If this were the only issue, I might have continued to try to work from within the organization to influence science policy and direction. However, the pivotal issue compelling my decision is the position which Autism Speaks is taking concerning vaccinations. The arguments which Dr. Dawson and others assert—that the parents need even further assurances and there might be rare cases of "biologically plausible" vaccine involvement—are misleading and disingenuous. Through its website and other communications, Autism Speaks has been influential and contributory in encouraging parents' doubts. By preferentially investing and advocating for the use of limited financial resources on the "biological plausibility" argument, the organization is adversely impacting the advancement of autism research.

Recent reports have documented significant outbreaks of measles and other infectious diseases which could have been controlled and even eradicated. The lowering of the vaccination rate has already led to deaths. If Autism Speaks' misguided stance continues, there will be more deaths and potentially the loss of herd immunity which would result in serious outbreaks of otherwise preventable disease. I further fear that if and when herd immunity is lost, there may be a societal backlash against the autism community.

In my role as an Autism Speaks Scientific Affairs Committee member, I would be lending credibility to an organization whose scientific agenda and positions I can no longer ethically support. Please accept my resignation, effective immediately. If anyone would like to discuss this with me further, please do not hesitate to contact me.

Sincerely,
Eric London, MD

Tony Attwood FAAAS Poetry Slam

There has been a lot of discussion on Wrong Planet and other sites about ASAN's petition calling on Tony Attwood to stop associating with FAAAS and Maxine Aston, to which Attwood replied by attempting to defend those associations via a form letter on the FAAAS website and other places. ASAN reposted and critiqued the letter, and by now this online war of words has been going on for two months. Attwood still hasn't seen fit to simply pick up the phone and call Ari Ne'eman, which gives the rather unfortunate impression that he can't bring himself to speak with a self-advocate as an equal.

As several people have pointed out, the petition was never intended as a personal attack on Tony Attwood, but as a constructive criticism. To be clear, my posting on the subject isn't motivated by any grudge either; in fact, I have to give him credit for his high level of energy, chutzpah, and crowd-pleasing skills. He is a masterful promoter. Because he has been so successful in positioning himself as a trusted figure in our community, however, I feel very strongly that Attwood has an ethical responsibility not to abuse that trust by associating with those who would harm our community.

The content of his website clearly reveals that such associations are still ongoing. As of today, a Google search showed 39 results for FAAAS on Tony Attwood's website. On one of his pages, Attwood touts an anthology of horrid poetry and essays called "The Book of FAAAS," which includes an article comparing autistics to prickly cacti and their non-autistic partners to wilting affection-starved roses. I'm not going to quote from it, out of consideration for readers who might not have a barf bag handy.

But it got me thinking, why should FAAAS have a monopoly on bad writing and ridiculous analogies? As I see it, we should create our own collection of sorta kinda poetic stuff making clear what we think of the situation. Feel free to post 'em in the comments, dear readers. Literary talent is definitely not required. Here's my contribution to get things started:

SKUNK CABBAGE

In yonder swamp skunk cabbage grows,
With shiny leaves of gleaming green.
The stench makes plain it's not a rose,
No matter how much it may preen.
Its foul reek assails the nose,
And many voices call for change.
Will Attwood listen? No one knows.
His lack of action's mighty strange.

Rethinking Autism in Vanity Fair

Vanity Fair has a short article about a new website, Rethinking Autism, which can briefly be described as a satirical pro-neurodiversity site featuring sexy videos that mock celebrity endorsements related to autism. These clever videos are a perfectly targeted and totally hilarious send-up of a certain former Playboy bunny's autism profiteering, and they had me rolling on the floor laughing. I've reposted one of them below. Jenny, you've met your match this time.

Autistic Parents: Not Such Rare Birds

Melody, the administrator of the AS Parenting website and forum, has announced that she is seeking new members and contributors. The site had been inactive for the past few months because of her family's move to Dallas. She says that she envisions the site as "all encompassing. Not only for parenting tips, but general life tips and for policy/politics."

I hope that those of my autistic readers who are parents will consider participating in this very worthwhile effort to provide an online community and positive resources for parents on the spectrum. At present there is a great dearth of such resources, not because autistic parents are uninterested in them or exist in numbers too small to benefit from them, but because the widespread stereotypes to that effect have discouraged their development.

We've all seen claims that autistic parents are as rare as unicorns, but it's actually quite common for a parent to be identified as autistic after his or her child has been so identified. The flourishing autistic community on the Internet has made autistic parents, through their presence on websites, much more visible; I'll note that the Autism Hub alone has at least ten autistic bloggers who are parents. As for the small but vociferous group of haters in the Maxine Aston/FAAAS orbit who contend that many children are growing up neglected by autistic parents, their unfounded stereotypes also can be effectively rebutted by the existence of positive parenting communities like AS Parenting.

It's pretty hard to stereotype autistic parents either as near-nonexistent or as cold and unfeeling when many of them are actively posting on parent community forums and seeking advice on their kids' playdates and homework, just like their non-autistic neighbors in suburbia.

FAAAS Social Work Seminars: Lessons in Hate

Before I slog once again into the fetid swamp that is FAAAS, I'm first going to mention a recent advocacy success in Maryland, where new legislation has been passed to safeguard the rights of citizens with disabilities regarding child custody and adoption proceedings. The fact that a person has a disability, whether mental or physical, now cannot be a reason for finding that the person is unable to care for a child, in the absence of specific evidence relevant to the family's circumstances and the child's best interests.

Meanwhile, in the less enlightened state of Massachusetts, which is ground zero for the hatred and destruction of families wrought by FAAAS, true believers in Maxine Aston's Cassandra cult are teaching continuing education seminars that indoctrinate social workers to treat autistics as defective and unfit to live in families. FAAAS member Harriet Simons regularly teaches such seminars at the Massachusetts School of Professional Psychology, such as this course in April. A similar program was presented in December by Grace Myhill, a social worker who is currently leading Aston-based support groups that are, to my great disgust, sponsored by the Asperger's Association of New England (AANE). Here's a link to the program's ugly content, from which I quote briefly:


"When a woman attempts to work through a problem in the relationship, the man with AS may respond to his partner’s feedback, expectations, requests or demands with denial, withdrawal, or even verbal or physical abuse. His rage or depression, problems with stable employment, or limited ability to parent then become additional stressors for the wife."


Nasty stereotypes like this have a long history of leading to actual discrimination against people with disabilities, including the serious issue of discriminatory treatment in child custody matters that the Maryland law addressed. Those who call themselves autism advocates while endangering our families by promoting the bigoted views of FAAAS and Maxine Aston in their associations, such as Dania Jekel of AANE and Stephen Shore (who recently wrote the foreword for Kathy Marshack's repulsive book that compares a relationship with an autistic person to living in prison, a war zone, and "a black hole of nothingness"), should be aware that they do so at the risk of losing whatever respect they might have had in our community.


Edit, June 4: I have just been informed that an Australian law firm, LAC Lawyers, has a page on its website advertising family law services "for people who have been affected by someone with Asperger's" and quoting extensively from the Potential for Abuse article that was recently removed from the ASPIA website in response to international condemnation.

http://www.laclawyers.com.au/legal/Asperger%27s-Syndrome.aspx

To take action against this blatant appeal to prejudice and disability stereotyping, I've provided a link to a site that explains how to file professional disciplinary complaints against lawyers in New South Wales.

A Diagnostic Label Is Not an Insult

At best, a label is a means of enabling people to get useful services for their particular needs. Although the system does not always work as it should, at the very least a label ought to be simply a descriptive term, rather than being used as an insult by people who do not have the diagnosis. Unfortunately, we all know that such language is used all the time:

"That was such a retarded thing to do."

"He's so clueless, what is he, autistic or something?"

"You're acting like a total spaz."

Now, I'm fairly sure that most of the people who talk like this are being thoughtless, rather than intentionally hateful. If they had ever considered the possibility that they might be overheard by someone who actually had a diagnosis of Mental Retardation, or Autism, or Spastic Cerebral Palsy, they'd have chosen their words more carefully. But such language is so widespread in our society that millions of people just repeat it without thinking about it.

And then there's what I would call the flip side of using a label as an insult: Taking great offense to any criticism of one's behavior, out of fear that others might suspect that one has Big Bad Behavioral Disorder Cooties. Here are a few examples of that:

"How dare you slander me by saying that I have problems controlling my temper! I'm perfectly sane and nothing at all like Those People who go to anger management counseling!"

"Someone told me I was being passive aggressive in a conversation. I'm extremely insulted by that because there is an official psychiatric category of passive aggressive personality disorder."

"What do you mean, I'm too defensive? Are you suggesting I'm some kind of psycho?"

Once again, I think that in most such cases, it's a matter of thoughtlessness and not outright hate. The person who took such umbrage to the words "passive aggressive" probably never stopped to consider the social implications of insisting so vehemently that she wasn't at all like those with an official diagnosis. I'm sure it never even occurred to her that by equating a diagnostic category—which no one had suggested that she actually belonged in—to an insult, she was adding to the stigma against those who really were diagnosed in that category. That's often the way stigma works; it's like a children's game of Hot Potato, where everyone is so anxious to get it away from themselves that they don't care who ends up with it.

Sometimes, people just need to stop and think before they speak.

Lovaas Safari Tours at Erik's Ranch

Guest post by Rita Skeeter, award-winning journalist and ultra-reliable source for all the dirt you've ever wanted to read.


You're probably wondering what a journalist of my incomparable reputation is doing on a lowly Muggle blog. Well, yesterday while I was working on a much more important article about the Ministry of Magic's investigation of marauding trolls in the countryside, I just happened to come across a blogger trying to fight off three trolls who had been lurking under a bridge. Of course, all I had to do was flap my lips a few times, and the trolls ran away screaming. I don't know why you inept Muggles can't manage that.

Out of the kindness of my heart, I took the blogger to a nearby tea shop and bought her a nice cup of tea to settle her nerves. Then I slipped a few drops of a truth potion into her cup when she wasn't looking. I never go anywhere without it, naturally. A few minutes later I had this blog's password, and I took the opportunity to do a bit of snooping. Well, wouldn't anybody?

In the drafts folder, I found a half-finished post about a proposed residential facility in Montana for autistic adults, called Erik's Ranch, whose advisory board includes the well known behaviorist Dr. Lovaas. Of course, he's not as well known as I am. Because I'm of the mind that all Mudbloods belong in institutions, I decided to rewrite the post to include a few of my own keen insights.

It seems that Dr. Lovaas' public image has been refurbished somewhat since the days when he boasted that he could cure autistic kids by slapping and screaming at them. Even the cleverly named Autism Speaks, which has never actually had any autistic people speaking for it, has jumped on the rickety old Lovaas bandwagon by touting ABA-centric autism insurance legislation. Now, I told the Wrights they ought to hire a witch or wizard to put a repair spell on that old bandwagon before the wheels fall off. Even a first-year Hogwarts student could do that. But did they listen to me? Nooooo, like all Muggles, they're much too full of themselves.

This morning, just because I don't like being ignored, I stuck a few pins into a voodoo doll where Suzanne Wright's heart ought to be. I still haven't figured out why it had no effect whatsoever. Not that I care what happens to anybody who's as incompetent as she is. I'll just point out here that You-Know-Who does a much more effective job of eradicating bothersome minority groups, as well as dealing with obvious Mudblood sympathizers like Brian Reichow of Vanderbilt University, who, along with his co-authors in a 2008 study, had this to say about autism treatment hype: “There have been a number of different reviews of evidence-based practices of treatments for young children with autism. Reviews which have critically evaluated the empirical evidence have not found any treatments that can be considered evidence-based.”

Humph!

Anyway, back to Erik's Ranch, which is described on its website as "a structured environment for lifelong learning that encourages participation by residents, and serves as a destination location to attract family and friends to share experiences with their loved one. The ranch will offer horseback riding, photo safaris and other ecotourism adventures…"

The website is full of nice warm fuzzy cheerful happy-sounding buzzwords like community, inclusion, and the often repeated phrase "lifelong learning." However, there's no mention of what happens when residents decide that they don't want to stay there lifelong. Too bad for them, I guess. They should've made more of an effort to become indistinguishable from their peers. Then they wouldn't have had to face the consequences of being, in the website's own terms, "children who didn’t make it to the recovery we all hoped for."

Residents will be given "work" opportunities (the website's authors are the ones who put the term "work" in quotes, which shows what they think of it) and will be placed in jobs as groundskeepers, tour guides, and other service positions. Visitors to the ranch will enjoy this fascinating opportunity to create photos and videos of the lovely Montana scenery and wildlife—and, presumably, of the curious behaviors of the savage autistic natives on the reservation. It'll be just like taking photos on an old-timey colonial safari a century ago, when the sun never set on the British Empire, and when nobody except common riff-raff cared about such foolishness as human rights and respecting the dignity of other cultures.

If I were in charge of running Erik's Ranch, though, I'd have better sense than to let the general public roam randomly around with video cameras. After all, what if a slapping and screaming incident, or some other abuse or molestation of a resident, ended up on the evening news? No hype-mongers worth their salt would risk letting their public image get out of control like that. It's all about careful manipulation of the media, people. But then Muggles can't be expected to have the natural journalistic savvy of a brilliant reporter such as myself. I figure they'll just have to learn the hard way.

Gotta run now—there's a hot new rumor about Harry Potter to investigate! I'll just put a Confundus Charm on this blog so that abfh will be too confused to notice the new post. Silly Muggles are always so easy to fool.

Morningside Elementary, St. Lucie School Board, Stop the Hate

In September 1957, after a federal court had ordered racial desegregation of the schools in Little Rock, Arkansas, an angry white mob surrounded Little Rock High School in an attempt to prevent nine African-American students from entering the building. When Arkansas officials failed to restore order, President Eisenhower sent in federal troops to protect the students, who came to be known as the Little Rock Nine. While attending the school, the students faced vicious bullying not only from racist classmates, but also from some teachers and other school employees. One of the students, Melba Pattillo Beals, later wrote a harrowing memoir entitled Warriors Don't Cry.

While this may seem like ancient history and something that could never happen again, even now in the 21st century some families with autistic children are enduring bullying and harassment from bigots who want to segregate their children. Melissa Barton, who successfully brought a complaint that resulted in the suspension of the teacher who incited a group of kindergartners to vote her son out of class, has faced ugly retaliation as a result of defending her son. Her children also have been attacked by haters. I have reposted an open letter from Ms. Barton along with her appeal to the school board and superintendent for decency, proper enforcement of the law, and respect for her family's civil rights:


I am not sending this to you so that you may have sympathy for our family but be aware of what retaliation comes with defending your child. If this is happening to you as well, do not fear. A wise friend once told me: Wishing you a day without retaliatory behavior, if that is possible. One of my inspirational quotes from Gandhi to you: First they ignore you. Then they laugh at you. Next, they fight you. Finally, you win.

Since my defending Alex our family has been bullied beyond anything I could have ever imagined. The bullies are not children but their parents, teachers, law enforcement and a Vice Principal.

As I write this to you I almost do not know where to begin. First, my son Kyle who is ten is in the gifted program at the very school that treated Alex so cruelly. This is the only gifted program in my area so I have no other choice.

In the beginning of the year I received a letter from the principal of the school warning me to leave. Within a few days my ten year old had been pushed physically by the Vice Principal of the school right in front of me! The police said that there was nothing that they could do, then it happened again.......still nothing. Later, Kyle, my ten year old had been given grades that were not accurate after a letter from my attorney they improved within days ten points or more. In January, I received a notice from the school that they were pursuing a truancy case against me for Kyle who had only missed five days of school all with notes. The truancy officer was shocked to find that the school wasted her time and mine. During all of this I have been fighting for a IEP for Alex and battling the district for a FAPE under IDEA Law - still not one service to date - In February, Wendy Portillo decided to appeal her punishment as a teacher by the district : http://www.tcpalm.com/news/2009/jan/29/alex-barton-teachers-suspension-appeal-be-heard-mo/ The very night the above article came out in our local news, I received six hang up phone calls from the school number.

At the appeal for Wendy Portillo, teachers from Morningside heckled me and my oldest child infront of media. One teacher in particular seemed like he had mental issues and a breakdown was taking place in the parking lot of the appeal building. When I phoned police to speak to the School Resource Officer Division, I was treated very poorly and told that it was not their liability to protect my son at school.

I can handle the snares from teachers, staff and parents at the school. I can handle letters to our local news paper from parents at the school with nasty comments. I can handle calling the school and being hung up on nearly every time I call to speak about my son Kyle's education. But I have to draw the line somewhere:
Last Friday http://www.cbs12.com/news/barton-4717586-says-school.html

When I called the SRO to the school about the incident, she wrote a police report that was bias and claimed that there was nothing that could be done. She did not even question the other mother until late in the day as she felt it best to wait until she got off of work. In the report the SRO writes that I did not appear to be pregnant, although I am clearly six months along. The woman was never questioned about stalking me as she said she had been.

We have had police officers drive to our home and run the plate of visitors for no apparent reason. I have been followed by these same officers to and from the school every day. The SRO's Sargent referred to me as a con artist to a dear friend of mine and the list goes on and on.

But, it hasn't even gotten bad yet. Yesterday, I was forced to send the following email to the school board, and superintendent:

Mr Lannon, Mrs Renew and members of the board:

My name is Melissa Barton,

The reason I am contacting you today is a serious issue.

My oldest child Kyle Barton is a 4th grader at Morningside in the gifted program as it is the only one in my zone. From the beginning of this year there have been miscellaneous incidents with staff members at Morningside Elementary directed at my son Kyle due to a separate ongoing issue with my other son from members of Morningside and now parents of the school.

Recently a parent came up to me and told me that she had been following me. She also made threats to harm me and my unborn child on school property with no consequence to her. SEE: http://www.cbs12.com/news/barton-4717586-says-school.html

Today, I went to pick up Kyle from school as I do everyday, with my younger son in tow. When I arrived at Morningside I immediately was approached by a woman holding a picket sign ( I started to snap photos with my cell phone). As we pulled into the parent pickup line where all the children stand to wait to get into their parents cars my young six year old son with autism and I noticed several other possible parents/others holding picketing signs that stated "Our children love Morningside" "We love Morningside" and other like worded things regarding teachers at Morningside. This took place on school property just three feet or less from my son Kyle. One of the picketers heckled my young autistic son as he sat scared in the front seat of my car. My son Kyle got into our car with tears running down his cheeks. We also noticed was several staff members and one volunteer from Morningside standing directly next to the picketers. Of the staff I witnessed ESE Coordinator, Cathy Oliver and Patricia Gascogine, Assistant Principal names are the ones I know. Other staff were camped out just inside the doors of the school watching the protest about our family.

Here are my concerns:

Parents that are strangers were feet away from my son Kyle and other children making remarks about me while your staff stood idly by. Not only was his safety at risk but his mental well being as well. Additionally, these picketers on school grounds were taunting my autistic son as we drove past to get Kyle. These actions will impact my children for years to come.

I sincerely hope you consider this to be a VERY SERIOUS occurrence and take the appropriate measures to make sure it never happens again in your district and to make an example in general of the staff like Mrs. Oliver and Mrs. Gascogine. There is something seriously wrong with the picket being allowed take place while staff stand by and do nothing all on school grounds.

I am sickened, outraged and utterly beyond words. This is not only morally wrong but legally as well.

I expect to be contacted within the next three school days with an apology for my children and what steps you are going to take to discipline the staff involved and prevent those parents involved from coming onto school property for the purpose of bulling, harassment or retaliation.

I hope we can expeditiously come to an agreeable solution.

Sincerely,

Melissa Barton