Sunday, November 18, 2007

More Food and Friends

At the end of my most recent post, Breaking Bread, I talked about how we were having some friends visit this weekend, I would be attempting a fairly difficult recipe - authentic Spanish Paella (sans rabbit, of course) - and that we would be heading off to "A Day Out With Thomas".
So its only fair that I report the results of the weekend .... which was a rousing success on all levels!
First up, the Paella. You must realize that I am a foodie with little opportunity for outlet of my foodie-ism. I am not a big eater, but I like what I like and often crave well-prepared fresh foods . Suffice it to say that flavor trumps dietary value in my book. So when I set out to decide what to make for our guests this weekend, I hearkened back to a recipe I last made, with the help of my visiting-from-Chicago gourmand best friend about 7 years ago (pre-kids). Actually, this is the same recipe we used then.
Essential is the Paella pan. This is a 13-inch skillet with low, flared sides and dual handles. It is the utensil that gives the dish its name. Paella is Spanish fare, and therefore it is prepared in numerous forms dependent upon the region the cook hails from. In coastal regions, for example, clams and oysters are de rigeur. In regions with hard winters, such as the mountainous areas, cured meats are common ingredients. Since I am not a seafood guy, I lean more towards the "turf" than the "surf" version. I chose to use bone-in chicken breasts (chopped into thirds) and Portuguese Linguica sausage for the meats, and green beans, artichoke hearts, and red peppers for the veggies.
The true heart and soul of Paella, however, is the rice and the saffron. Saffron - that rarest and most expensive of all spices, gives Paella its characteristic yellow color and unmistakeable aroma. The rice I used is Arborio - a medium grain that tends to end up al dente as opposed to mushy or chewy.
The recipe took me three hours to complete - non-stop cooking. I probably could reduce the over-the-stove time with experience, but since I am a Paella novice I really had to sweat every step this time.

Here I am slowly sauteeing the red peppers. In the pan you will notice a whole head of garlic with the top trimmed off. This stays in the pan the whole time - through all steps - and imparts a wonderful, deep, rich garlicky flavor that deepens as the process unfolds. The sauce pan holds the saffron-infused chicken stock that provides the unique flavor of the dish. The broth won't be added for another hour or so from this point. The red peppers are sauteed after the chicken and sausage has been done. After they have softened considerably, I will remove them to a plate and tent them with foil. This way, the steam their heat builds under the foil will help loosen the skin so I can easily remove it before adding the peppers back in for the final step. Details, details!
While all that sauteeing is going on, I have to keep chopping,mincing, and grating. Yes, grating. Part of the key to a good Paella is the Sofrito. The Sofrito provides the flavor base. It is the equivalent of a Mirepoix, or the Holy Trinity of celery, onions, and bell pepper in Cajun cooking.
But since Paella does not stew or roast for long periods, the flavor base has to be pre-deconstructed, so to speak. So what I did is grate a whole tomato and grate a whole onion to make a big tomato/onion mush. To this, I added thin slivers of garlic (yes, more garlic). Also in this picture you will see a bottle of Spanish Rioja - a sturdy red wine made from Tempranillo grapes. When in Rome, and all that, right? The lemon wedges are to serve with the finished product for those who prefer to add a squeeze of tartness. The Bosc pears are for the salad.
And now, the finished product! At this point I have boiled down over 5 cups of saffron-infused chicken stock. By rotating the Paella pan over two burners, as well as covering it with foil and placing it in a 425-degree oven, I have caused the rice to absorb all this liquid. Also, I have been passably proficient in producing the pinnacle of Paella perfection (awesome alliteration, eh?) - the Soccarat. This is the term that describes the light brown crusting that develops on the bottom layer of rice in the pan. It is just shy of burnt, and is the final piece of the multi-layered puzzle of flavor in this dish. Note in the middle of the pan that whole head of garlic still tagging along.
Okay, no more food talk. I am sated for a while, and now return to my regular diet.

This morning we went to 'A Day Out With Thomas'. This was out third year going, as Jason is perhaps the biggest Thomas fan the world has ever known.
{Aside - One of the best moments I have ever had with Jason was a time when he had found the Thomas website (by himself, of course). He was in his fourth year, and was gaining some verbal skills at the time. He still had lots of issues - and still does - with voice volume modulation, so I was trying to teach him to whisper. To do so, we got on the webpage that has all the Sodor characters listed vertically, with a brief synopsis (a CV, if you will) of each one. Well, little did I know he was going to go through every single one, whispering their name and 'story'. I was simply overwhelmed with the volume of information he threw at me that night (it was late at night as I remember, before we discovered melatonin), and amazed at his ability to keep reverting to a whisper as I reminded him. It was one of those moments where we just ... connected. Those moments were rare back then, and I'll always appreciate his love for Thomas as being one of the things that gave us some 'conversation material'. }
What would make this year's visit interesting would be our friends' little boy - all of almost-three years old - and his undying enthusiasm for all things Thomas. And the day certainly lived up to its billing.

We rode the train pulled by the life-sized Thomas engine - that was fun as always.This is Colin on the train, straining to be turned loose on the unsuspecting passengers.

We also got some pictures with Sir Topham Hatt. Trying to get three young boys to look at a cameraman is difficult in any case - when you add the Amphetamine Personified that is Sir TH, it becomes nigh on impossible. Making the day even more .. interesting .. is that it was close to 90 degrees fahrenheit. It was just downright HOT and it was hard to escape the heat and sunlight. If you combine the effects of the heat, the crowds, the excitement, having guests spend the night before at our house, all the Thomas paraphernalia, and some ice cream you begin to see the recipe for what parents of ASD kids know to be somewhat of a problem - sensory overload.

Today, though, Jason surprised us all. He actually agreed to let a clown paint his face! This is a huge step for him, and one that caught us completely off guard. His sensory integration issues would have prevented this from even having been a consideration in the past. This is a huge difference from last year, and we are just so proud of him for doing this today. He has always had a lot of sensory issues, and that makes this a really big deal!

Saturday, November 17, 2007

Breaking Bread

Recently, we had a very nice visit from some friends. Their family is kind of a mirror image of ours - 3 kids, each set within a few months of age, oldest child autistic, semi-rural lifestyle. Its always a pleasure to spend time with them, and since it was at our house, I made lunch. Prior to having kids I was a pretty avid home cook. As with so many things, this changed a bit when the responsibilities of parenting took hold. I'd gladly make that exchange again 100 times, but that doesn't mean I can't long for the 'easier' times (funny how they only seem easy in retrospect. Aaaah, such is life.)
So I made the usual; sandwiches, salad, side dish.
The sandwiches featured smoky, thin-sliced Black Forest Ham piled on slices of crusty french bread. I added freshly grated Gruyere cheese with some freshly chopped tarragon for some flavor complexity and then spread on some Dijon mustard. I then coated the bread slices with butter - on the outside, of course - and toasted the sandwiches in a grill-pan till the cheese was all melty and the tarragon flavor had been released.
In the meantime, I sauteed a skilletful of cauliflower florets in olive oil until they took on a golden color and nutty aroma (I love cauliflower). I removed the cauliflower from the pan and added a whole chopped onion and more oil (I've never been noted for low-fat cooking). Once the onion was sweating, a BIG pinch of Spanish saffron went in, followed by some chicken stock. At this point I added a can of stewed Roma tomatoes, some toasted pine nuts, and a heap of chopped Italian parsley. And, of course, the sauteed florets. After simmering for a bit to reduce the liquid, I coated the whole thing with some homemade fresh garlic breadcrumbs (made earlier in the day by toasting some of the crusty french bread I used for the sandwiches, along with oil, parsley and minced garlic in the food processor) and put the whole pan right in the oven at about 400 degrees. The result of all this is a rich, deep bronze panful of spiced, roasted cauliflower with a coating of crusty garlic breadcrumbs. Heaven.
Moving on to the salad. A bed of field greens such as baby spinach and frisee. One peeled and chopped Bosc pear (I like Bosc pears because they are dry and crispy like apples - perfect for salad). A big handful of toasted walnuts (toasted side-by-side with the pine nuts earlier in the day). And some crumbled, rich, strong blue cheese. I'd have used Stilton, but the market didn't have any. Finish it with a Balsamic Vinaigrette - a really light, bright one - and that makes one heck of a lunch.
But wait! A really good meal always requires a wild card. Sometimes it is a special announcement someone makes while eating. Sometimes it is a big storm during the meal, or a hallmark being celebrated. An old friend makes any meal special. Even the perfect song (like, for example, anything off 'A Charlie Brown Christmas' album). In this case, our guests had brought a bottle of wine. This was a Zinfandel that comes from the vineyard they had been married on. Awesome sentimental value, superb wine, the wild card was complete, and the meal was a success. Gotta love that.

Tomorrow we have some other friends coming over. This time, they are spending the night so we can all get up and go to 'A Day Out With Thomas' in the morning. Their little boy likes Thomas the Tank Engine as much as ours does, and we will get to see the 'real' Thomas engine and ride in the train. I'll make an authentic Spanish Paella (yes, saffron seems to be the spice of choice for me these days) with chicken and sausage, artichokes, sweet peppers, green beans, arborio rice, and a sofrito of grated onion, garlic, and tomato. And perhaps a Spanish Rioja to add some depth to the meal. I just love food and friends.

Friday, November 16, 2007

Contradictions and Strawmen

In another fascinating glimpse at his relentless attempts to attack and degrade anyone who identifies with the concept of Neurodiversity, Harold Doherty has recently expounded upon the evils to be found at the National Autistic Society. In their own words, "The National Autistic Society provides a wide range of services across the four nations for people with autism, their parents, carers and the professionals who work with them."

So why is the NAS under attack by a prominent autism advocate in Canada? Because of this article in the Independent. In it, a parent of an autistic child - one who aligns herself with Treating Autism, a "rival organization" according to the Independent article - casts disdain upon the NAS for their attempts to promote public awareness of autism via the recent "Think Differently About Autism" Campaign. Please read the full article for details on what the journalist feels lie at the heart of the debate.

So, in classic form, Harold Doherty saw an opportunity to use this article as a means to attack "Neurodiversity". From his post on the topic:
" In the United Kingdom parents fighting to help their autistic children overcome the deficits of their autism disorders, fighting to help their children as all parents do, face opposition from a National Autistic Society ..."
"...saying that society should change how it views autism will not help those autistic children who need help for the more serious symptoms of autism, a neurological disorder."
"Neurodiversity ideologues are not human rights advocates. They are in fact suppressing the human rights of autistic children..."

Fascinating stuff.

Here's the thing - Harold once again is walking away from his own stated beliefs - that people who have Autism Disorder should be supported by Evidence-based treatments/interventions - because of the expediency of being able to use this platform (the Independent article) to launch another attack on Neurodiversity. Perhaps someday Harold could clarify exactly who "Neurodiversity" is, as the group seems to grow all the time by his definition (The NAS involves over 100,000 people). Harold, by supporting this particular pair of people and the group they represent - praising them as "Autism Heroines" - is supporting a group that endorses numerous biomedical treatments that are backed by no evidence. This group also fails to endorse any behavioral treatments, including ABA which Harold claims is the Gold Standard in Evidence-based autism treatments. This link shows the list of treatments endorsed by Treating Autism, the organization that includes "Autism Heroines" Lara Hawkings and Sally Eva. Does this look like an Evidence-Based Approach to you? This page includes such gems as Chelation, "Gut Bug Treatments", and a link to Lupron Protocol (look under "New and Promising!").
To make matters even worse, Harold does a follow-up post that features a quote from one of the "heroines" mentioned in the first post. One line from that quote is: "The NAS employs people with autism so it is over-influenced by those at the mildly affected, employable end of the spectrum. " Maybe its just me, but I think this person is clearly indicating that the NAS employing autistic people is a bad thing. Can she be serious? Maybe I am jumping to conclusions, though. Maybe what she is really saying is that its ok for the NAS to employ autistic people, as long as they shut up. Amazing.

So let's review how many strawman arguments and self-contradictions Harold Doherty can perform in the brief span of two short posts:

"In the United Kingdom parents fighting to help their autistic children overcome the deficits of their autism disorders, fighting to help their children as all parents do, face opposition from a National Autistic Society which has drunk deep from the kool aid of the neurodiversity 'movement'." Here, Harold offers the strawman that 'Promoting Autism Acceptance' = 'Opposition to Helping Children'.

"In the UK the National Autistic Society has adopted the "autism is beautiful" ideology and frowns upon parents like Lara Hawkings and Sally Eva who fight to help their own children overcome and recover from the sometimes debilitating deficits of their neurological disorder." Strawman: That not supporting unproven biomedical treatments for autism equates to 'frowning upon' parents who pursue these treatments for their kids.

"Neurodiversity ideologues are not human rights advocates. They are in fact suppressing the human rights of autistic children; their right to be treated for their neurological disorders. And they are suppressing the rights of parents to help their own children." The fallacy here is that biomedical interventions are a legitimate treatment for neurological disorders. Also found here is a contradiction to Harold's stated beliefs that only Evidence-based treatments should be considered. His profile on his blog states: "Evidence based treatment, education and residential care by properly trained service providers are required to help the 1 in 150 persons who have an autism spectrum disorder." Nothing there about Low-dose Naltrexone or Urecholine.

"...NAS should be ashamed of itself for imbibing this topsy turvy ideology and for helping suppress the human rights ... of autistic children in the UK." Ok, I don't even know how to classify this ludicrous statement. The NAS is helping to suppress the human rights of autistic children in the UK. How? By asking people to take some time to improve their understanding of autistic people?

(From the comments section) "Anecdotal evidence is evidence, it is just not as strong as other forms of evidence. An evidence based approach looks at the various types of evidence in support of an intervention and ranks them according to the quality of the evidence with anecdotal ranking very low." This is where Harold begins to realize that the position he has taken over the years - that Evidence-based treatments are the only way to go - creates a trap for him. How can he attack Neurodiverse-associated scientists who oppose bogus biomedical treatments due to their lack of evidence since he also opposes such treatments? The statement I just quoted answers that question. So this one falls under self-contradiction.

(From Comments)"The real issue with NAS v parents, and it is a general issue between neurodiversity generally and many parents, is whether treatment and cure should be sought for autistic children at all." Okay, this is the ultimate strawman. In this one, Harold claims that ND advocates believe that no treatment, intervention, or support is appropriate for autistic people. I can't believe people still hold on to this one. Please, will someone show me somewhere, anywhere, that anyone having anything to do with Neurodiversity has made this statement? Even if you were to find one instance, which I doubt, I could offer hundreds of instances where people have said the opposite. This is one argument that has worn awfully thin.

(From comments)"ABA is an effective intervention based on the quantity and quality of the research although it is not a cure." Another contradiction, in that Harold has held up as "heroines" two people who support an organization that has nothing to do with ABA promotion or discussion. It is strictly a biomedical group. The NAS, on the other hand, has information about ABA right there on their website. So how does Harold justify supporting Treating Autism over the NAS?

(From comments)" Neurodiversity advocates, including NAS, oppose attempts to treat or cure autistic children." Whoops! There's that silly argument again.

And, finally, Harold says of this quote that it "...summarizes nicely one of the most intense points of discussion in world autism debates:"
"The NAS employs people with autism so it is over-influenced by those at the mildly affected, employable end of the spectrum." As I stated above, this is a deplorable statement. Harold, as an autism advocate, is being highly self-contradictory for supporting it.

Wow. Normally I am a pretty soft-spoken blogger who does not get too deeply involved in blog wars. But when I read this nonsense from Mr. Doherty, well, some things you just can't take sittin' down, as they say.

Wednesday, November 14, 2007

Not Knowing

Though it has been more than a few years now, I still recall elements of my undergraduate degree. Though I did not pursue it as a career, I majored in Psychology with an emphasis on Neurophysiology. In the lower level Psych classes, it seems that just about everything they taught us was based on the concept of "stages". Erikson's Stages of Psychosocial Development. Kohlberg's Stages of Moral Development. Piaget's Stages of Cognitive Development.

In keeping with the basic idea I was left with - that the majority of these developmental diagrams were just flawed attempts by smart people at making sense of an incredibly random and unpredictable series of potential developmental trajectories - I will now introduce to you Steve D's Stages of Autism Acceptance Development (for NT's).
Let me begin by saying that my stages will be tremendously flawed, unable to be generalized to anyone but my own self, and might even piss a few people off.

Stage 1: You don't know, and you don't know that you don't know.

Stage 2: You don't know, and you begin to know that you don't know.

Stage 3: You know, but you don't know that you know.

Stage 4: You know, and you know you know.

Any parent of a child diagnosed with autism is intimately familiar with Stage 1. This is the time when we know nothing. We are pretty much going off the limited and largely fallacious information provided to us by the person giving the diagnosis. This information usually contains the line, "A person diagnosed with autism may even someday have the ability to live independently in a group setting." While true for many autistic people, this flawed statement does not even begin to describe the real set of possibilities that exist for many others who receive this diagnosis in their first few years. But when someone is new to their child's diagnosis, you just don't know these things. One also, if they share a similar background to me, has limited if any experience in knowing autistic people. One has virtually no working knowledge of what "autistic" really means. One has no conception of the range of difficulties the disorder can cause people to experience, no conception of the huge variance in personal experience autistic people can live with. It also has an overriding negative connotation - another thing which proves that at that stage we "don't know".

At some point later, we enter Stage 2. Everyone does. This is sometime after we have spent X amount of hours researching treatment options, funding options, outcome studies, reviewing discussion boards, attending local meetings, joining Autism Societies, meeting parents of other special needs kids via the school district. This is the point where we say to ourselves, "Crikey! (if we are Australian, anyway, which I am decidedly not) There is so much to learn!" And so we go about it. This is a crucial stage, and is the one that usually devolves the autism community into sects. Based on choices made at this point, one tends to set down a particular path. There are a million choices, but most are settled on while we are still in the "Knowing we Don't Know Stage".

I cannot comment on the last 2 stages, other than saying this:
-I am still in Stage 2
-I know a few NT folks who I think are in Stage 3.
-A non-autistic person cannot get to Stage 4.
Someday I will learn all about Stage 4 from my son. He is a bright, verbal, autistic boy who is not facing some of the challenges that other autistic people are facing. He is going to have his own set of challenges, especially I think those related to navigating social situations. I hope to raise him in such a way that he can, if he so chooses, be the ultimate advocate. An autistic person with Steve D's Stage 4 Awareness.

Wednesday, November 7, 2007

Excuses, Excuses

I'm not sure what the topic of this post is. I guess it is an admission that I am passing through a (hopefully brief) period of flagging enthusiasm for keeping my blog as current as possible. It has been a week since I posted anything at all, and a few weeks since I have posted anything resembling valuable contributions to discussion relating to autism (That post, by the way, titled "The Autism ... Continuum?" netted some of the best and most varied comments I have ever received, comments that originated from a very diverse range of people covering various age groups, NT and ASD, several countries - all in all, good stuff).
Don't get me wrong - I don't plan on stopping. Its just that there are so many things going on in my life and in the autism blogosphere that the net effect seems to temporarily be that I haven' got enough creative juice to post as regularly as before.

So what exactly is going on? Let's see...
1) We had tremendous wildfires here in Southern California, which caused a huge week-long distraction. (I actually wrote about that experience).
Also recently occurring are such things as a trip to Disneyland for Jason's birthday, surgery for one of our dogs, school meetings and whatnot, lots and lots of work due to seasonal shifts and covering for out-of-the-office co-workers. Lots to do leaves little time and energy for writing.
2) A favorite blogger (and friend) of mine was threatened and harrassed straight off the internet by "the bad guys". His site always provided a good petri dish for autism-related discussion, as it was frequented by such a diverse group of people. Other people whom I respect and like very much have also stopped or all but stopped blogging. Though, as always, there will be new people entering the community who have great things to offer, that doesn't mean I can't miss the other ones.
3) The more I read about and learn about autism, the more I realize that a non-academic like myself will have a hard time contributing new thoughts to the area I feel most strongly about: improving understanding of the condition of autism and using that understanding to provide better supports for ASD individuals. I am going to keep trying, but I am not one to spend too much time rehashing other people's thoughts or findings. Therefore it is difficult sometimes for me to generate "new material". But I don't want my blog to degenerate into a site like Harold Doherty's where I just grab autism news off the newswire and spin it to launch attacks against those who are ideologically different from me. If I can't take a stab at a careful, reasoned discussion (when that is my intent, not including posts where I am simply celebrating my family or having some fun, then I'd rather not say anything at all.
4) We have three kids now, and they take a tremendous amount of time to care for, attend to, and nurture. And that is priority #1. So devoting the time to keeping up the blog is difficult. I also have a very challenging and demanding career. Again, a good thing, but it does make it hard to keep up the blog.

So anyway, I am going to get my mojo back soon, I expect. There still is much to talk about, much to learn, much to do.