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.

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.

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!

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.' "

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.

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:

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

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.

> 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 03:34 PM
Hey Michelle-

I was just slumming it through FEATBC's website and came across a recent article in the Ottawa Sun entitled, 'Autistic Kids' Kin Slam Grit Betrayal'. As you well know you don't get on FEATBC's website by promoting fairness or truth (and not at all if you are autistic and happy with yourself) Anyway, here's an excerpt:
----------------
EFFECTIVE THERAPY

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

Advocates call it a crisis, with one in 200 kids now diagnosed.

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

But like many kids, Laurel Gibbons' son, Robbie, 8, never got off the waiting list before he turned 6. His mom became an activist and won the federal NDP nod for Nepean-Carleton.

________________________

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 for instance, 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!"

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?

So why haven't we heard from any of them yet? If it is so great being cured of autism then let me hear about it from an autistic person- just once.

> What does the NAS mean by "the more severe manifestations of the
> disorder", and by "preventing them"?

>>What they mean is that the opinions of autistic people >>don't count, therefore they have to claim that anyone >>who objects to it doesn't have the form that's going to >>be prevented.

Well answered Amanda! What an awful day and age to be autistic when every success an autistic person has is attributed to 'good interventions'and every failure is attributed to 'being autistic'. Looks like NAS is out to eradicate the individuality of autistics too.

Stop me if I'm wrong but "severe manifestations" or "low functioning" for many autistics is a fluid/ ever changing thing. I might be 'low functioning' in one context according to one set of rules and high functioning in another context according to another set of rules.

A psychologist told me just the other day when I challenged her on what low functioning is is that it refers to someone with poor communication, not poor intellect. So I suppose dumb-ass loud mouths are higher functioning than quiet geniuses... I'll take a high functioning mind heart and soul over a high functioning mouth any day...

"if the genes responsible could be identified the possibility of new types of treatment and preventing the more severe manifestations of the disorder becomes stronger."

I've been wanting to ask the NAS if this was a statement of as a matter of fact, or one of support in this direction. But they've stopped responding to my e-mails and may even have my e-mail address on block by now.

Edited by author 07-23-2005 09:14 AM
Patty Clark's Memorial Service which took place on Thursday 21 July is on http://www.pattymemorial.org/MemorialService.html.

On Saturday 23 July 2005 06:01, QT - Philip wrote:

> What does the NAS mean by "the more severe manifestations of the
> disorder", and by "preventing them"?

What they mean is that the opinions of autistic people don't count, therefore they have to claim that anyone who objects to it doesn't have the form that's going to be prevented.

Edited by author 07-23-2005 09:10 AM
Hi Michelle,

Here is the text of the email I sent about 25 minutes ago to the NAS:

"Subject: 'Gene test' for autism in sight"

"I am an autistic person and a member of the National Autistic Society. I am concerned by this statement by a spokeswoman for the NAS in reaction to this news story - http://news.bbc.co.uk/1/hi/health/4697057.stm - "if the genes responsible could be identified the possibility of new types of treatment and preventing the more severe manifestations of the disorder becomes stronger."

What does the NAS mean by "the more severe manifestations of the disorder", and by "preventing them"?

I look forward to receiving your reply.

Yours sincerely

Philip Ashton

Hi everyone
been lurking, been busy head scrambles

re M/F test - had I been a split second faster I too woud have got 12/12 on the shape matching, instead it was 10/12 - supposedly very unwomanly or something; came out at 0 gender... you should see my index fingers! (much was made of the index to ring finger ratio in the BBC programme on gender)

re NAS genes statement, thank you for that Michelle, I'll pass it on to Mitzi W who also has a particular interest in these issues

re Autscape am in final stages of preparation for talk, wishing mine was earlier so over with not waiting till Thursday
I almost never take steps to find out about things in advance (I think because prior ideas so rarely match events) so do not yet know badge system but thank you Philip, whatever colour badges you and I choose I hope to connect with you there at some comfortable juncture
if I weren't presenting I'd be purely happily excited re Autscape, and mainly I am anyway despite disliking presenting

Hi Philip,

I guess I was wondering what counts as "low-functioning autism", assuming this would summarize the "more severe manifestations" the NAS wants prevented. The question remains, what are the criteria and when are they applied?

There is the IQ divide, with those having an under-70 measured IQ being considered LF. That is the standard in the science. But which test? The autistic kids in our Raven study were 30 %ile better on RPM than on Wechsler (a result not altered by the error we made in the adult data). This means that whether they are HF or LF depends on which test they get. And how do you judge RG in the same study? The NAS would look at his Wechsler scores and turn their thumbs down.

There is another problem in using IQ. The Flynn effect (discussed here before) means that typical people less than a century ago had average IQ scores in the LF range (below 70) if today's scores are used as the norms. Does this mean that many of our ancestors should not have existed, because they weren't smart (i.e., high-functioning) enough?

Or the criteria could be behaviours (those we have and those we don't). Usually, no one wants autistics with self-injury to exist. So if the NAS is using this as a criterion, then I should be prevented and Amanda also. Ditto for self-care--if the criterion is that the autistic must be able to emit typical self-care skills.

If they think labeled "non-verbal" autistics shouldn't exist, then they don't want Tito or Amanda or Drew Morton Goldsmith to exist, or maybe Alex Bain and Jim Sinclair, depending on when the cut-off age is.

This is generally (if not very coherently) what I mean by the kinds of questions the NAS should answer, by proposing that some autistics (but not others) should be prevented. They need to be specific: we allow this but not that. And they need to say how and when all this will be measured and judged.

Edited by author 07-22-2005 02:11 PM
Hi Dinah,

I have not yet decided whether I will wear a yellow or green badge for social interaction at Autscape; but if I wear a yellow badge you are very welcome to socialise with me, or if I wear a green badge.