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.

Another Recent E-mail

On a note related to my previous entry, the following is the full (minus the addressing line) of a previous e-mail in the same conversation as the last one.

Thank you for your support.

It's worth noting that one of my introductory posts mentioned both that I've recently completed the postgraduate coursework for BCBA certification and that I perseverate on research... in addition to the fact that I am seeking additional (supervised) clinical experience.

The first and last of these should have indicated pretty firmly that I do not believe that seeking help for your children is inappropriate, as some of those on the list seem to think I do. If this were the case, I would neither have taken the time to gain credentials related to providing this help nor sought a job that involved providing it.

The first two, on the other hand... I am uncertain as to how to phrase this politely, but...

There are over 1,500 people on this list. Many, if not most, of them are parents of autistic children. Of that number, only one person has thought to write me off-list regarding anything I've said on it (excluding my statement that I was seeking work -- if that is included, the number increases to two). No one has thought to ask me about research studies (which I read for fun and have extensive knowledge of). No one has even thought to ask me to reccommend articles, studies, or references -- on list or off. This is despite the fact that autistic individuals almost inevitably acquire a tremendous amount of detailed knowledge of the subjects of their perseveration. Many, if not all, of you have extensive experience with this phenomenon.

What's more, we almost always enjoy talking about the subjects of our perseverations. Again, many, if not all, of you have extensive experience with this phenomenon. I assure you that I am no exception on this count... and would go so far as to say that I'm near-starving for intelligent discussion of the research (in large part since I can't afford to go to conferences all that often). I only know one other
individual on the spectrum who actively perseverates on research and is at anything approaching my educational level (in fact, I consider her to be considerably above it despite the fact that she has less formal education than me). I always look forward to and enjoy our interactions -- despite the fact that they seem to almost inevitably break down into a series of misunderstandings -- because I always learn a tremendous amount from them.

Additionally, the nature and frequency of my responses should have been a pretty substantial indicator of my willingness to respond to that sort of thing. I have even made explicit offers to provide information or to elaborate on points. I cannot recall anyone taking me up on any of these offers.

I'm aware that there are other factors potentially involved (a desire not to impose on me, for instance), but... over 1,500 people. Even if half of that number was composed of service providers, that would still be 750 parents.

So, for the part that I'm not really sure how to phrase politely -- just what sort of impression do you think I get from these facts?

In addition, every post I've made has included a link to my blog. Many of the posts there are aimed at helping parents at some form or another. Many of them talk about things that I've mentioned only briefly on this list.

I have not, to date, recieved a single comment on any of them from anyone who arrived there by following this link. I also have the ability to make this statement.

Actually, I'd go so far as to say that I haven't recieved any indication that anyone here has even followed that link except for the one person who thought to write me off-list regarding something I'd said on it... who mentioned having done so in a private e-mail.

What sort of impression do you think that makes?

I'm bringing this up because, apparently, many on this list have accused me of not attempting to (or being unable to) take another's point of view or to empathize with another's positions. In fact, this is one of many largely unfounded autism stereotypes... and, if it is true in this case, it most certainly is not unique to my side of things. The above example was, frankly, the gentlest and least potentially controversial way I could think of to point that out. There are many, far harsher and more critical, ways I could have chosen.

This way also had the advantage of pointing out a resource that some of you may have missed.

On Grief

My father died this morning.

This is not a comfortable thing to write. It took me nearly six hours from when I left the hospital to get to the point where I could even start. Although you can't see from reading this, the first sentence of this entry took me several minutes. I stopped writing and simply cried for a while after the first few words.

Dad was in the ICU of the Cleveland Clinic, Florida and was scheduled for a surgery to repair what I suspect was a renal aneurysm (and why is it that people think I don't understand medical terminology? I'd much rather if they didn't dumb things down "for me"; so much information is lost when they do...). The operation would have been today.

My father's heart was already giving out on him. I knew that it was just a matter of time.

That didn't prepare me for the sight of my father's corpse.

I won't cover what that was like. There are some horrors that words fail to adequately express.

My mother was there when it happened. I wasn't -- I was at home, asleep. I was planning to visit again after my practicum today so that I could be there for him before the operation.

For obvious reasons, neither the operation nor today's practicum will be happening. I wish I'd spent more time with him yesterday... but it's too late to do anything about that.

I also wish I hadn't been sick last week. In a true perversion of the sort that pops up from time to time, I managed to catch a throat bug from one of the kids at my practicum and was sick throughout most of the week. I didn't visit until yesterday, when I was informed that I was no longer contagious. At the time, I told Mom that I'd never be able to forgive myself if I gave him something and that made him worse. As it turns out, I shouldn't have worried.

My last words to him were that I was going to class, and that I'd see him tomorrow (well, today, strictly speaking). I wish I hadn't said them.

I think that everyone has regrets at times like these. I'm no exception. I just wish they didn't hurt so much.

Then again, I know why they hurt so much... and wouldn't change those reasons for the world.

I won't pretend that my father was perfect. To do so would be to insult his memory. I won't -- can't -- do that. He was as human as anyone else. He was stubborn, often cantankerous, and frequently forgetful... among other things.

I loved him. It's difficult to express how much it hurts me to use the past tense in that statement. Part of me is still in denial.

It's tempting to react with anger, to lash out at something -- anything -- for my loss. I know better. The medical personnel at the hospital did everything they could for him.

It just wasn't enough. By all accounts, they'd warned him that sitting up was dangerous for him in his current condition because it risked bursting the aneurysm. While I'll probably never know for sure (there won't be an autopsy), it looks like that's precisely what happened.

And, according to Blogger's timestamps and my system clock, I've now spent more than five hours writing this. It's been somewhat over eleven since the events I describe above. Not all of this time has been spent trying to type this up, but the vast majority has. It's just that difficult.

I won't be blogging much in the next few days. I won't even have much access to the Internet. Dad wanted to be buried up in his hometown in Andrews, South Carolina.

We'll be granting his request. We even managed to secure a plot next to his father's grave for him.

Emotional turmoil aside, I suppose I've been taking things about as well as could be expected. I cried, of course. I joined in with my family's prayers over Dad's corpse even though I'm not exactly religious. I came home and cried myself to sleep... and wasn't really feeling that much better when I woke up four hours later.

I'm grateful for the way my mom's taking charge of things. I've had to run some errands and take care of some things related to the arraingements we're making, but the lack of demands has let me work through things somewhat.

Writing this blog entry has helped, too.

I've also broken out what I semi-jokingly refer to as my "comfort research". By this, I mean the set of articles I have (but haven't read yet) that I'm fairly confident will be easy (emotionally speaking) to read through and will also be enjoyable and informative.

Or, to put it another way, I ransacked Michelle Dawson's and Morton Gernsbacher's CVs, grabbing every yet-unread article and book chapter from them that I could. I don't have everything (yet -- gotta love the ILL system), but good, unbiased research is, for me, extremely effective stress relief and a source of great comfort (especially when the articles aren't biased in their interpretation of findings!)... the main problem being that rereading an article is of much lesser effectiveness. I've also found a few articles by Meredyth Edelson that look quite promising. I'm not quite sure what I'll do once I've exhausted them, but I'll make do somehow.

I suppose this may seem to be a fairly unique way to deal with this sort of grief if you look at it from a superficial standpoint. The truth of the matter, however, is that it has a lot in common with more "normal" coping strategies. Many people, when grieving, seek comfort from a favored activity, a favored location, a favored food... the list goes on and on. I will admit that the specifics are unusual in my case, but that's about it.

The question becomes one of whether or not an outsider -- someone who doesn't know me or understand autism -- would understand the reaction... and what they'd make of it.

In any case, it's now been around thirteen hours since Dad died. It's been more than seven since I started writing this. I'm tired... and, frankly, I have arraingements to make.

I was planning a couple of blog entries for the next few days, reviews of a pair of articles which I think are pretty significant for the autistic community (even though one of them isn't on autism). They will have to wait. Hopefully, I'll be able to get to them next week.