> Autism makes it hard for people who have it to communicate, make
> friends -- or even eye contact -- and recognize danger.

I love phrases like that, "Make friends -- or even eye contact".
I have friends. I don't make eye contact. But that phrasing makes it sound like making eye contact is easier than making friends, and that someone who can't make eye contact can't make friends.

> The costly therapy is so effective almost half of children who
> get it lose their diagnosis of autism, according to one study.

I've seen some places' excuses for "recovered" kids. They're not.
> Could someone please find me just one adult who can honestly say
> that they were severely affected by autism, had a form of aba
> and are now completely off-spectrum and no longer autistic? Not
> the ones who fake their parents version of normal just to make
> them happy but someone 'cured' of autism who feels better off
> now that they are indistinguishable from their peers. Someone
> refer me to just one testimonial from a captain of a football
> team, talking about a childhood of stimming and spinning and
> being overwhelmed with crushes of stimuli and inconsistent
> social rules-
> "Thank god for ABA - if it weren't for them flashcards I'd be
> in an insititution instead of a Ford Mustang by now!"

The "recovered" kids video mentioned football teams and the like a lot. A lot of the very *autistic* kids played on them. And did talk about it.
One of the kids was asked what autism was like. He just said "I went like this (showed one stim) and like this... (showed another stim) and like this...". And that was his conception of "being autistic".

I've known many people who thought they were cured but weren't, and later realized it. I've read stuff by two people (Georgiana Thomas and Sean Barron) who sometimes claim to have recovered from autism, but who also occasionally admit that they're still autistic and exerting a lot of effort.
> Should be an easy task if 1/2 of all kids that are ABA'd go
> off-spectrum shouldn't it? That would be 1000's of autistics
> across north america alone- no?

You'd think, yeah.

Of course some of them aren't told that they "used to be autistic". Makes me wonder what life will be like for them once they hit adulthood.

Edited by author 07-23-2005 07:03 PM
Busy, disorganized... will try to catch up, but here's the ASBC-posted (keeping in mind ASBC and FEAT BC are indistinguishable) take on "recovery" (I wrote about the "almost dried up" thing before, but didn't give the message context, which is here http://www.autismbc.ca/discus/messages/11/182.html?1108081368 ), including one of the Auton kids who is not supposed to know he's ever been autistic:

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By Tamara Leger on Wednesday, December 08, 2004 - 07:24 pm:

Almost Dried Up: Is Full Recovery From Autism Really Possible?
Monday, December 13; 7-9pm
West Vancouver Memorial Library
Peter J. Peters Room

We hope that you can join us Monday, December 13; 7-9pm at the West Vancouver Memorial Library in the Peter J. Peters Room for “Almost Dried Up: Is Full Recovery From Autism Really Possible?” -- a powerful, positive and enlightening evening about beating the odds and coming out "looking indistinguishable" on the other end.

First, Jenny Obando will tell her story of her son’s hard-won recovery, using visual examples, on how their family tackled the tough reality that is Autism. She will share with us what went into her successful mix including her son’s starting points, challenges and her family’s personal sacrifices in overcoming her first child’s diagnosis and what life looks like at the other end. She also has a second child recently diagnosed who is in the beginning stages of an ABA program.

Second Speaker is Dr. Glen Davies of ABLE Developmental Clinic who will talk about the power and potential of ABA treatment and if full recovery from Autism or “coming out clean with no residuals” is really possible. Our last presenter is Janet O'Reilly who will come with son Russell Pearce who is one of the "Auton Four". Russell has long since completely lost his diagnosis, has no SEA, no special tutors or supports and in fact is not even aware that he once had Autism. We would appreciate that attendees **NOT** inform Russell of his past! Any questions regarding Russell's treatment or his recovery from Autism should be directed to his Mom Janet O'Reilly, **in private**, via email or phone.

We believe that this presentation will spread the message of Hope that treatment brings ... something that is needed this Christmas season.

All are welcome: Parents, grandparents, friends, teachers, therapists, judges, politicians and Service Providers. Entrance is by donation; materials, coffee and treats are always supplied. We hope that you can join us for this truly extraordinary event.

With treatment there is hope. We will help you slay your giant!

Tamara + Anissa

-----------------------------------------------------------

Glen Davies is the behaviour analyst who was quoted in the Auton trial decision:

"Providing a number of supportive services to a disorder that with treatment we know that half could recover, is tantamount to withholding treatment and continuing with support and respite services for AIDS patients after a treatment that can cure half of them has been discovered."

I wonder though about the "coming out clean" thing. Like autism is dirt or something. Or maybe it's a behaviour analytic term I just haven't come across in the science yet.

Hey Mike, since when do you hang out here at TMoB on weekends? Nice to see you outside of the nine-to-five.

Have to go. More later.

More re Mike's question about "just one adult". First, there's the science. There are no adult outcomes of early ABA/IBI published in peer-reviewed science. There is barely anything at all anywhere, in spite of Dr Lovaas boasting more than once about having the highest-priority NIH grant to crank out his adult outcome study.

There is disorganized mention of six of the nine "best outcomes" in a chapter by Dr Lovaas in a 2000 book. There is a section called "The 1998 Follow-up Study in Adulthood" and it occupies a pargraph (less than half a page) with sparse data (mean IQ only) and promises that these people are normal. This is now six of nineteen who had the full Lovaas starting back in 1970. The autistics from this program would range from early thirties to about forty years old now (I don't have time to check more precisely).

Outside of the science, I know of one published essay by an autistic who was in the UCLA program in the 1970s. It's in the book "Autism: From Tragedy to Triumph" written (sort of--there's a ghostwriter--and quite badly) by his mother. I'm not sure if her son was in the Lovaas (1987) study. I can't recommend reading this book unless you can take a lot of bad writing, quite apart from the content:

-----------------------------------------------------------

"Do not give Drew breakfast or lunch on Wednesday before you bring him in."

"Not feed him?"

"Yes, yes," Dr Lovaas said. "So he will work for food as a reward." He smiled at me and patted my arm. "It will be fine. He will not starve."

-----------------------------------------------------------

Where was I? The essay written by the now-non-autistic young man at age 21 is impossible to judge. An autistic could have written it, but there is no way to tell. The young man makes no mention of ever having been autistic. I'm not sure he's aware of his past (this is unclear). His mother reports that he doesn't remember much of his time in "therapy", and takes his "normality" for granted. Interestingly, he was studying psychology--a subject very frequently chosen by autistics.

I haven't seen the "recovered" kids video; isn't that a DAN/Dr Rimland project? I thought those kids were chelated or otherwise DANed, versus ABAed, though of course parents do both (and a lot else also, sometimes) simultaneously.

Article about Doug Flutie and his autistic son http://www.boston.com/sports/football/patr..._at_home/?page=full

Highlight:

"Jeffrey Lurie, the owner of the [Philadelphia] Eagles, had a brother who was autistic who didn't speak his first word until he was 35. He told Jeffrey, 'Don't talk to me like I'm an idiot.' "

Amanda wrote: "Of course some of them aren't told that they "used to be autistic". Makes me wonder what life will be like for them once they hit adulthood."

I'd speculate that one would have quite an identity crisis and feel especially alienated. Makes me think of these kids who are born hemaphroditic and the parents choose one sex for them even theough the kid identifies with the other sex. You can raise a boy as a girl for only so long until they have a serious identity crisis....there will be lots of 'recovered' autistics showing up on Oprah one day :-)

Re: The Mercury Moms
I saw an interesting interview with Robert F. Kennedy Jr. who as you probably know is championing the cause of therimosel being a public health risk. He was not championing the link to autism at first and had prepared a big piece for ABC exposing the vac. companies and big pharma cover-ups of the risks...the night before it was to air the execs at ABC cancelled it.

What is interesting is that ABC was then barraged with emails from moms of autistic kids insisting on the link between therimosel and autism so they recut the piece. It changed the entire focus of the cover-up and broad ranging public health concern to a narrow focus of it being linked to autism (accompanied by a piece about pharma treatments for autism)

It would appear that the controversies and lack of understanding of autism weren't lost on ABC who likely knew that if they linked the story to autism it would muddy the waters and be taken up by wing nuts and not owned by the entire public...

here's a related article about the whole mercury thing:

http://www.kentucky.com/mld/kentucky/news/12209683.htm

Not that I buy in to the mercury connection but possibly some kids with autism-like symptoms have been mercury poisoned? I dunno- still no excuse to marginalize autistic adults even if a fraction of autistic kids are mercury poisoned.


Michelle wrote: "Jeffrey Lurie, the owner of the [Philadelphia] Eagles, had a brother who was autistic who didn't speak his first word until he was 35. He told Jeffrey, 'Don't talk to me like I'm an idiot.' "

That quote made my day! Thanks Michelle!

Hi Mike,

Re kids born with atypical gender--you want to see ethics? There is a lot of excellent ethical work in this area, the kind of ethics that are never seen in the vicinity of autistic people. The overwhelming trend is towards allowing the child with atypical gender an "open future". This means not removing any possiblities (including that the child will prefer to remain atypically gendered), regardless of how inconvenient it is for parents not to have a typically-gendered child.

It is also acknowledged that if an atypically-gendered child is bullied, etc, then this is not because the child is different. It is because some people are intolerant and cruel, and it is those people who need to change, not the child.

As I've written before, I'm never going to forget hearing an atypically gendered man recalling his childhood of endless grotesque surgeries and "prodedures" to make him into a girl. Then he says that this was nothing compared to having to live with the shame of all those around him, of having to live with knowing there was something terribly and shamefully wrong with him that people spoke in whispers about. This was a man in his fifties and he had not forgotten.

Re mercury, see RFK Jr careen impressively (and obliviously) into the other vaccine theory (MMR, which has not ever contained mercury) http://www.huffingtonpost.com/theblog/arch...erup-let-_4561.html I wrote one of the zillion responses. Also consult the Diva re vaccine theories (and links provided by the Diva's blog).

Here's a competent peer-reviewed article comparing autism to mercury poisoning, http://pediatrics.aappublications.org/cgi/content/full/111/3/674

Re the Kentucky article and Boyd "Mad Child Disease" Haley, he's the "autism expert" who says autistic adults don't exist.

Edited by author 07-26-2005 03:39 AM
Go to http://www.dsm5.org/suggestions.cfm if you want to post comments on problems, shortcomings and limitations in the DSM-IV-TR; and/or offer suggestions for the new DSMV - tentative publication date 2011 - of specific changes in diagnostic criteria, for a new subtype to an existing disorder, for a new disorder, and for deletion of an existing disorder.

Edited by author 07-26-2005 08:09 AM
Here's the autism gene du jour (uh, actually it was *yesterday's* gene du jour) http://www.timesonline.co.uk/article/0,,11069-1707998,00.html

This time, no promise of a potential pre-emptive strike against autism via genetic test, but a cute metaphor from the scientists (gee, our mutant genes can't communicate, just like us) and ominous promises of brand new drugs.

Mike, I forgot my UOP story. Remember UOP? The only time I ever met with Montreal autism society officials, what they really wanted was my urine (finally, a way for autistic adults to be useful!). That was about five years ago. Back then I had no foundation for judging what was or wasn't a crackpot autism theory, but for some reason, I decided not to go there (so to speak). I refused, and I wonder if this went down on my record somewhere as non-compliant behaviour.

Re the DSMV, thanks for the link, Philip. I assume they're looking for clinicians and researchers (those who have to diagnose), but it would be interesting if they listened to the diagnosed also. And yeah, I would have a suggestion or two.

CBC radio will rerun "The Radio Club" this morning on Outfront:
Tuesday, July 26, 2005, 11:45 a.m.(12:15 in Nfld)
26/07/05

Five sharp raps and one loud bam. That's the secret knock that will get you into the classroom of eight young boys who have autistic spectrum disorder. They have formed "The Radio Club" to tell you what it's like to view the world through the lens of autism.

Or hear it online... http://www.cbc.ca/outfront/listen/2004/04-11-23.html

Edited by author 07-26-2005 04:51 PM
Hey Michelle- Re: m/2259
That UOP experience sounds like a real pisser! hahaha

Re; Autism and Religiosity
here is an interesting link- http://www.geocities.com/buddhaautist/

Ok on further inspection the above site is a little out there but still interesting...

Edited by author 07-26-2005 09:26 PM
Nothing like standing by and watching non-autistics who wish autistics didn't exist argue over what caused the "hell" of our existence http://cbs5.com/health/local_story_207192624.html

This is just like (and as lovely as) the ABA parents vs governments "disputes", where the premise of both sides is that autism is horrible, and where all agree that getting rid of autism via prevention or treatment is ideal.

Edited by author 07-27-2005 03:11 AM
The Globe and Mail, which has relentlessly been irresponsible in its coverage of autism issues, managed to publish a reasonable editorial on Monday re vaccines (you have to pay to see it, hence no URL):

-----------------------------------------------------------


Don't fear the vaccines
Monday, July 25, 2005 Updated at 12:05 AM EDT

Until a vaccine is developed for irrational fear, knowledge will have to do. And the best knowledge says that childhood vaccines do not cause autism, hyperactivity and other such disorders.

Such, however, is the power of unfounded worry that leaders of three top U.S. health agencies felt it necessary to hold a news conference last Tuesday to reiterate that childhood vaccines are safe. The agencies (the Centers for Disease Control and Prevention, the National Institute of Child Health Development and the Food and Drug Administration) wished to pre-empt those parents who were set to tell Congress on Wednesday about the supposed dangers of vaccines. The agencies were hoping that science and reason would trump emotion.

Before a polio vaccine was introduced in Canada, there were 20,000 polio cases annually. Before there was a diphtheria vaccine, there were 9,000 annual diphtheria cases. Before there was a rubella (German measles) vaccine, there were 69,000 rubella cases each year. In 2002, there were 16 rubella cases, and no cases of the other two. Canadians (and people in other advanced Western societies) have forgotten just how bad these diseases were. In the United States, rubella killed 2,100 infants as recently as 1964.

Understandably, parents worry about rising rates of autism and behavioural disorders. Autism rates rose sharply in the 1990s in the U.S., at the same time that thimerosal, a mercury-based preservative, was being used in childhood vaccines in that country. But no credible evidence has emerged to link thimerosal and autism, notwithstanding the conspiracy-laced theories of Robert F. Kennedy Jr. and some others south of the border. It may be that the apparent increase in the autism rate (to one in 200 children from one in 1,000 three decades ago) owes much to an expanded definition of autism. No one knows.

In Canada, thimerosal has not been present in most routine childhood vaccinations since 1994 (the flu vaccine is an exception). Thimerosal has never been used in the measles-mumps-rubella (MMR) vaccine. When 5,000 children who received this shot had their medical records reviewed, there was no link to developmental problems, a Columbia University study published last year in The Lancet found.

Canadians are aghast when, in far-away countries such as Nigeria, diseases on the verge of extinction such as polio rise again after community leaders declare vaccines to be part of a deadly U.S. plot. Canadians need to make sure that knowledge continues to trump irrational fear at home.

-----------------------------------------------------------

However, the Globe and Mail has never allowed knowledge (science, reason, ethics, etc) to trump its own published (in editorials, and in reporting) irrational fears of autism. Nor have they allowed knowlege, science, reason, or basic journalistic ethics to prevent them from widely disseminating irrational fears of autism and autistic people. In the absence of exactly the irrational fears of autism the Globe and Mail promotes, how would the anti-vaccine gang sell their position?

An objective observer might take note that the righteous and unassailable (no other views are allowed) prejudices against autistics held by Canada's most influential newspaper and editorial board innoculates them against recognizing irony when they are up to their eyes in it.

The above editorial generated an excellent letter, published on Tuesday, which you can probably see here http://www.theglobeandmail.com/servlet/Art...TERS26-10/TPHealth/ . If not, here it is:

-----------------------------------------------------------

Vaccinate your kids
By KARIN BJORNSON

Tuesday, July 26, 2005 Page A12
 
Montreal -- Re Don't Fear the Vaccines (editorial -- July 25): I wish the Canadian Pediatric Society would add its voice to that of the American health agencies and shout at the top of its lungs that parents must vaccinate their children.

I recently became acquainted with a woman whose child, like mine, is less than one year old. She informed me that she had not and would not be vaccinating her boy because according to her "research," it was harmful and could cause autism. This exemplifies the power of self-appointed experts whose disdain for medical science puts children at risk.

As I am a big believer in vaccines, I asked my pediatrician if any harm could come to my son if he were to play with a non-vaccinated child.

She explained that I should limit any socializing with such a child to the outdoors. My baby has not had all his vaccines and booster shots and is therefore not fully protected from potentially harmful and/or fatal diseases.

As this woman's child is not protected at all, he is more likely to become ill and expose others. This child will eventually enter the daycare system.

Let's hope most Canadians will continue to ignore any campaign of misinformation about the safety of vaccines.

-----------------------------------------------------------

Interestingly, the Canadian Pediatric Society has taken a position re early intervention in autism, concluding that "There is no evidence to support adopting a single autism treatment program as the gold standard." http://www.cps.ca/english/statements/PP/pp04-02.htm

Sketchy Canadian news stories about a 23yr old autistic woman who died. "Died" in this case, from the media stories, means "criminally neglected until she was dead".

The first story is a press release, apparently from the police http://press.arrivenet.com/bus/article.php/673977.html The second story is from a local newspaper http://www.mississauganews.com/mi/topstori...5079p-3400844c.html The third story is from an Edmonton tabloid, and the autistic woman is given a name http://www.edmontonsun.com/News/Canada/200...27/1149256-sun.html

It is mostly pointless to be relieved that those who apparently neglected Tiffany Pinckney and therefore killed her are now in custody. I don't have the courage to think about what Ms Pinckney must have suffered and I've been looking dumbly at these stories for a while now without any thought except naive noises like why, why, why no one noticed and intervened (according to the media, seven *years*?) and how the hell could this happen.

I hope Tiffany Pinckney was at some point in her life known and cared about by human beings who valued her. I hope there are people who know about her life and will make sure her life is respected and remembered now that it has been taken away from her. But if there are such people, where were they?

Sketchy is the word Michelle.

The implication is that she must have suffered for a long time at the hands of these two that have been charged who likely only took her in to get at her disability allowance. In my experience there aren't nearly enough checks and balances and as long as the couple wasn't making waves the assumption was likely that everything was just hunky dory

It's her sister and brother in law. They had her for 7 years. She was 24. So they had her since she was 17? Maybe the parents died?

It's too horrible. "Charges in Autistic Death", was the name of the Sun story.

Camille

Edited by author 07-27-2005 04:40 PM
It is appalling that Tiffany Pinckney suffered such neglect by her sister and brother in law. Their being charged with not providing Tiffany with the necessities of life means that they starved her to death. Like you Michelle I hope that her real value is recognised, that she will be remembered with respect, and that at some time in her life she was loved and cared for.

I am suprised that this story was not in the Globe and Mail and the Toronto Star.