Saturday, October 16, 2010

The Bigotry Defense?

Some of you may be familiar with the Alex Barton/Wendy Portillo case. For those of you who aren't, it started two years ago, when a kindergarten teacher (Portillo) had her class list off why they didn't like an autistic classmate (Alex Barton) and then had them vote him out of her class. To briefly summarize a really, really long story, Alex is now doing quite well academically in a different school district (although he still bears emotional scars), Wendy Portillo is back in the classroom (retaining her tenure) and again abusing students, and Alex's mom, Melissa, has filed a federal lawsuit against the Portillo and the St. Lucie County school district.

I'm writing this blog entry about that last one. You see, the school district's defense is apparently going to be something along the lines of the argument that the incident didn't hurt Alex... because autistic children can't understand -- or be hurt by -- "negative social feedback" (or, in other words, someone else doing something nasty to them).

No, I'm not joking.

After going through quite a bit of trouble, I've managed to obtain some of the documents that the district's submitted in their defense. Specifically, I've obtained the "expert testimony" that they commissioned from two doctors: Dr. Sue Antell and Dr. Max Wiznitzer.

These are quotes from public documents available on PACER, albeit not for free. I had to jump through a lot of hoops to get them (although, admittedly, most of these were technical -- I didn't bring a memory card with me when I went to visit my school's law library, the law library's one computer set up for PACER access was an antiquated technical nightmare, and I didn't want to unnecessarily spend money to get the documents from my home system), but they're still technically public domain. As such, I've uploaded them to RapidShare to cut down on the metaphorical red tape. Feel free to host them elsewhere.

I'm not going to comment over-much on them. I'm going to let what they wrote speak for themselves. I will, however, clarify a bit on both.

To start off with, there's this section of Dr. Antell's testimony -- delivered before she ever met or examined Alex (whose full name is Caleb Alex Barton, although he does not respond to "Caleb"):
... Based upon this review, it is my opinion that CAB probably does have Autism, a disorder of language, executive functioning and social relatedness, which profoundly impacts upon how a child perceives and reacts to the language and behavior of other people.

It is further my opinion that the events described would not be expected to have any long term impact even upon a typical child who might appreciate more of what was going on around him. As they grow up, children experience numerous negative or unpleasant experiences with peers, teachers and parents. Such experiences are part of the normal experience of development. They serve to help a child develop an appreciation for the impact of his behavior on others in his world, and are important in the development of sympathy, empathy, and altruism. This is quite different from the constant and chronic bullying which we unfortunately see somewhat among older children, or the chronic systematic emotional abuse of a child by the adults in his life. In any child with Autism, such experiences are going to be processed quite differently. Depending on the extent of the pragmatic language dysfunction, the lack of social relatedness, and the impairment in the ability to appreciate another's point of view (what psychologists call "Theory of Mind") it is quite likely that many, if not most children with autism would simply have no emotional connection to such events. While they might encode and recall the "script" (i.e. the language used and the actual events), their ability to be emotionally impacted by what is almost entirely a language based experience would be anticipated to be exceedingly limited. This is not to imply that Autistic children cannot experience trauma. Rather it attempts to distinguish between possibly unpleasant events which are the result of linguistic exchanges from more primitive responses which might involve non verbal actions, or verbal communications which would produce feelings of fear or terror which are generated by non cortical brain regions.

Beyond this, we have the opinion of a qualified child psychiatrist that CAB suffered no emotional distress as a result of this incident, and another who described behavior with autism but not PTSD.

Based on the foregoing, it is my opinion to a reasonable degree of neuropsychological probability that CAB has not demonstrated any real evidence of emotional distress as a consequence of the events of 5-21-08. It is further my impression that he does not require any ongoing treatment, and depending on his ability to appreciate what is happening in such therapy, that this poses a risk of creating a trauma where none actually exists.
Two clarifications: "The events described" were the vote-out incident. The same is true of "the events of 5-21-08".

And then there's Wiznitzer's testimony:
In summary, Caleb Barton is an 8 year old boy with a diagnosis of an autism spectrum disorder (Asperger disorder) and behavioral features labeled as attention deficit hyperactivity disorder (including compatible rating scales). He has a history of challenging behaviors in kindergarten with no details of his behavioral functioning since that time (except for the report of Dr. Coleman). School records document impairment in social interaction with peers (supported by psychiatric evaluations). Assuming that his diagnoses are accurate, it would be difficult for a child with a significant impairment in socialization (compounded by the social issues associated with ADHD) to fully process and comprehend the impact of negative social feedback from peers (as stated by Dr. LoSardo "on some level he probably didn't get social significance"). Therefore, this type of event would not be expected to result in PTSD.

Dr. Wiznitzer's testimony is nowhere near as bad as Dr. Antell's... but really.

To the St. Lucie County school board, however, I have only one thing to say.

Saturday, October 9, 2010

Some Links That May Have Passed the Neurodiversity Community By

Just as a series of quick notes while I try to recover some strength for next week's midterms:

Not too long ago, two reporters of my acquaintance wrote an excellent article for the Miami New Times regarding the Geiers and their political antics. They blogged on the affair (and what it says about the media) on Thursday; the entry is of general interest to the autism-relevant communities.

Almost exactly one week ago, Peter Bell and Geraldine Dawson of Autism Speaks held a pair of "forums" here in South Florida, one in Miami and one in Boca Raton. A recording of the Boca Raton forum is available in two parts here and here. I spent a good part of the week transcribing various parts of these recordings -- trying to get a record of the more notable quotes and timestamps in them. I've finished with Part One (Bell's presentation), but have yet to even start on Part Two (Dawson's presentation and the subsequent Q&A). This is unfortunate, as there's some genuinely good/useful stuff in that part.

Cleaned up somewhat, my transcript (which has various notes, etc.) reads as follows:

Part 1/Ross:

10:31 : Their advocacy efforts -- "a way in which we give the autism community a voice."

12:52 : Start of a discussion of his son's "regression".

13:14 : Implicit endorsement of the opioid excess theory (and the GF/CF diet).

14:42 : Start of the "duplo discussion" (sequence RE son's play styles)

15:28 : "... he basically disappeared in front of our eyes."

21:08 : "We're also, ah, as I said, getting ready for the adult years, um, we're actually, we had our first meeting, ah, about, ah, guardianship last week, um, which we'll be going through when he turns eighteen in January..."

25:54 : "And autism today, in some people's estimation, is an epidemic. Um, certainly the increase in the last twenty years, which we, uh, estimate at about six hundred percent, um, has reached epidemic proportions. It is better understood; um, I think most researchers would say that it's not well understood yet. We, uh, have some ideas about what some of the causes might be, um, but, ah, we certainly don't know what probably is behind the vast majority of the cases. Um, it is considered a spectrum disorder, um, I mentioned, ah, before, ah, how there are different types of autisms, um, and uh, certainly we refer to autism these day, these days as autisms, and, uh, that there are multiple types of autism. It is, by and large, considered to be a treatable disorder, ah, this notion of 'recovery' is real. Uh, and I use the quotations over 'recovery' because it's more or less a term that's defined by no longer meeting the criteria of autism after having been previously diagnosed with it, um, and it is believed that anywhere between maybe ten to fifteen percent of cases of autism, um, the child does recover or ultimately lose his their diagnosis."

27:22 : "The earlier you get it, the better the outcomes are going to be."

28:28 : "We're fortunate in that, in the mid-1990s, several national organizations were established, one of which Jackie referenced, was, which was the National Alliance for Autism Research, which had an amazing presence here in South Florida, largely because of Jackie and all the efforts that she did. Ah, another organization that was founded around the same time was Cure Autism Now, which was based out of Los Angeles. And CAN and NAAR, really, between the two of them are largely responsible for having created what is now the research -- autism research -- field, which, ah, probably totals or numbers at least two thousand scientists around the world who have dedicated their careers to autism."

29:07 (Continuing): "Um, the DAN! movement also happened around the same time, um, and sure some of you have, ah, seen DAN! doctors and so forth, and, ah, certainly, uh, this whole attitude of thinking of autism as something that they can actually ameliorate and make better and so forth, um, again, I think also contributed to that whole notion."

30:19 : (Some credit-mongering/AutSpeaks bragging. Not really politically useful, but worth listening to.)

32:58 : "We're also very involved in family services; this was a department that was formed not long after the merger with Autism Speaks, and that's about helping families, ah, live a better life through quality of life for those who are living with autism today." (compare the numbers)

35:15 : "We're very proud of, um, what we're able to do in terms of helping families."

(Discussion of what they do to "help families".)

51:10 : Community grants in Florida. Total $136,435 over three years. Compare Geri Dawson's salary.

51:56 : "Uh, we have funded, uh, four different CARD programs throughout the state, um, as you found listed here."

54:41 : "So let's shift gears and talk a little bit about advocacy and, uh, what we do in government relations, and, as I said before, this is all about giving those that have autism and their families a voice. Ah, I will do a little bragging down here and say that our AutismVotes website, which is, did recieve a Webbie award, basically being one of the best healthcare sites, ah, that's available, ah, for political campaigns."

(Lots of credit-seeking.)

56:39 : "And we've also to ha-have more dialogue with the office of disabilities. We do recognize that autism is part of the larger disability community, and so we've started to make some inroads in helping to figure out what place autism has in that, within that spectrum."

1:07:43 : "Believe me, when I go home tonight, and it probably won't be until tomorrow morning when we all wake up, 'cause I get home very late, uh, in the wee hours of the morning, but I'm very cognizant of the fact that when I wake up tomorrow morning and see my seventeen-year-old son, it's going to be hard to think about the progress that we've made, 'cause he still has autism, and his life is very challenging."

(Closing remarks from the 1:07:43 timestamp are well worth listening to.)

1:09:37 : "It is still a public healthcare crisis, or a 9-1-1, so to speak, um, we have to make sure that people recognize that we have, for the most part, an unexplained six-hundred percent increase in the last two decades, and we need to understand why. Um, and there is absolutely a sense of urgency in terms of what we need to accomplish in order to get the answers that we need."

1:10:31 : "I think it's also critically important that people with autism have a voice in this. Um, and even if you're not able to communicate verbally, doesn't mean you're not able to have a voice. Um, I know we, as uh, a-y'know my son is is marginally, ah, communicative, ah, or verbal, um, and y'know it's hard to really get a sense of what is it that he wants out of life and what is his future, but y'know what, we, we go through great, um, ends to try to figure out what it is that he wants, um, and I think that we have to, as a community, stop and listen, and listen to the individuals that have autism, and, and have them be a part of what we're, what kinds of decisions that we're making on their behalf."

Tuesday, October 5, 2010

Still More on Vaccination

I just got vaccinated yet again -- this time the vaccine even contained mercury!

I'm now heavily perseverating. Oh, wait. That's normal. Nope, still not feeling any more autistic.

Friday, October 1, 2010

Another Comment on Vaccination

I got vaccinated today -- against three different illnesses. I still don't feel any more autistic.

My arm is a bit sore, though.